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Sample records for palliative patienters gastrointestinale

  1. Fatigue in patients receiving palliative care.

    PubMed

    Ream, Emma

    This article discusses fatigue in patients receiving palliative care. The article initially considers the prevalence of fatigue in different groups of palliative care patients, then addresses how it manifests before reviewing how it can be assessed and managed. The focus of the article is on palliative care but it draws on, and has relevance for, chronic disease more widely.

  2. Is exercise ignored in palliative cancer patients?

    PubMed Central

    Eyigor, Sibel; Akdeniz, Sedef

    2014-01-01

    Exercise and rehabilitation approaches in palliative care programs for cancer patients affect patients’ symptoms, physical functioning, muscle strength, emotional wellbeing, psychological symptoms, functional capacities, quality of life, mortality and morbidity positively. Based on scientific data, palliative cancer patients should be recommended to participate in exercise programs. There is no standard approach to recipe an exercise regimen for a palliative cancer survivor. Studies for demonstrating the positive effects of exercising in palliative care patients are increasing in number day by day. At this point, increasing awareness about exercising in the entire team monitoring the patient and our efforts in this matter seems to be very important. PMID:25114869

  3. PALLIATIVE CARE FOR PATIENTS WITH ADVANCED CANCER

    PubMed Central

    Gray, Alan; Ezzat, Adnan

    1997-01-01

    The increasing life expectancy in Saudi Arabia will be accompanied by an alteration of the patterns of disease similar to that in Western countries. One of these will be cancer, the second leading cause of death in the west at present, where 1:3 people develop cancer during their lifetime and 1:4 die of it. Cancer deaths are rarely easy. The distress particularly the pain it can cause is legendary. Palliative care is the care and study of patients with active progressive far advanced disease, where cure is impossible, the prognosis predictably short, and the focus of care is the patient's quality of life. A Palliative Care Program has been developed at KFSH&RC, since 1991. This has broadened the spectrum of health services available to cancer patients. Palliative care needs to be more widely available in the kingdom to relieve an important cause of human suffering. PMID:23008572

  4. Palliative Care Consultations in Hospitalized Stroke Patients

    PubMed Central

    Ladwig, Susan; Robb, Jessica; Kelly, Adam; Nielsen, Eric; Quill, Timothy E.

    2010-01-01

    Abstract Objective To determine the pattern and characteristics of palliative care (PC) consultations in patients with stroke and compare them with the characteristics of nonstroke consultations. Methods The palliative care program at Strong Memorial Hospital (SMH) was established in October 2001. SMH is a 765-bed academic medical center with approximately 38,000 discharges. For each consult from 2005 to 2007, we collected demographic, clinical, and service-related information. We explored similarities and differences in patients with different types of stroke, including patients with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and subdural hematoma. In addition, we compared these data to the nonstroke patients who had a palliative care consultation during the same time period. Results Over the 3-year period from 2005 to 2007, there were a total of 101 consultations in patients with stroke (6.3% of all PC consultations). Of the 101 consultations, 31 were in patients with ischemic stroke, 26 in patients with intracerebral hemorrhage, 30 in patients with subarachnoid hemorrhage, and 14 in patients with subdural hematoma. Patients with stroke who had a PC consult were more functionally impaired, less likely to have capacity, more likely to die in the hospital, and to have fewer traditional symptom burdens than other common diagnoses seen on the PC consultation service. The most common trajectory to death was withdrawal of mechanical ventilation, but varied by type of stroke. Common treatments negotiated in these consultations included mechanical ventilation, artificial nutrition, tracheostomy, and less likely antibiobics, intravenous fluids, and various neurosurgical procedures. Conclusions Patients with stroke are a common diagnosis seen on an inpatient palliative care consult service. Each stroke type represents patients with potentially distinct palliative care needs. PMID:20384501

  5. Laser palliation of the HIV+ patient

    NASA Astrophysics Data System (ADS)

    Convissar, Robert A.

    2003-12-01

    Many oral manifestations of HIV infection can be used as markers for degree of immunosupression. These manifestations may be treated with antibiotics, analgesics, and antineoplastics, which may interact and interfere with antiviral agents used to treat the disease, and possibly exacerbate it. Dentists will see more HIV-infected patients as medical research transforms this disease into a chronic illness. Lasers have been shown to be effective instruments in palliation of oral manifestations of HIV infection. The use of lasers to palliate the painful symptoms of three oral manifestations of HIV infection is described. The advantages and benefits to both patient and dentist will be discussed. The paper does not address the use of lasers as a modality to treat or cure HIV infection -- only to palliate some of its symptoms.

  6. Palliative wound care management strategies for palliative patients and their circles of care.

    PubMed

    Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia

    2015-03-01

    To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.

  7. Patient reasoning in palliative surgical oncology.

    PubMed

    Collins, Lindsey K; Goodwin, Julia A; Spencer, Horace J; Guevara, Caesar; Ferrell, Betty; McSweeney, Jean; Badgwell, Brian D

    2013-03-01

    The purpose of this study was to determine the patient reasoning behind treatment choice after palliative surgical consultation. Patients undergoing palliative surgical consultation were prospectively enrolled in this observational cohort study (11/2009-5/2011) and administered an open-ended questionnaire asking for their reasoning in choosing their treatment strategy. Of 98 patients enrolled, 54 were treated non-operatively and 44 with surgery. Patient responses indicating their reason for treatment selection were categorized into (1) quality of life or symptom relief, (2) unclear or response not related to treatment strategy, (3) increase length of life, (4) treat the cancer, (5) concerns over surgical complications, (6) doctor's recommendation, (7) religious reasons for treatment choice, and (8) for family. The most frequently cited reason for treatment selection was symptom relief or quality of life improvement in 46 patients. Thirty-eight patients cited their doctor's recommendation while 20 patients selected their treatment to increase length of life or treat their cancer. Only 2 patients cited concerns over surgical complications as their reason for choosing their treatment strategy. The most common reasons for treatment selection in palliative surgical consultation include symptom relief or improvement in quality of life and the doctor's recommendation with few patients listing concerns over surgical morbidity. Copyright © 2012 Wiley Periodicals, Inc.

  8. Nutritional considerations for the palliative care patient.

    PubMed

    Shaw, Clare; Eldridge, Lucy

    2015-01-01

    Many palliative care patients experience nutritional problems as their conditions progress. This includes those with progressive neurological conditions, chronic obstructive pulmonary disease (COPD) as well as advanced cancer. Nutritional issues not only impact patients physically but also psychologically and can also have an effect on those caring for them. It is important that patients are screened appropriately and that one identifies what symptoms are potentially affecting their intake. Decisions should always be patient-centred. Nutritional interventions range from food modification and nutritional supplements, to more intense methods such as enteral or parenteral nutrition, and these may have ethical and legal considerations. This article explores the nutritional issues faced by palliative patients, the ethical issues supporting decision-making and the methods of nutritional support available.

  9. Palliative Care

    MedlinePlus

    ... Patients and Families Take the Quiz What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh- ... more control over your care. A Partnership of Palliative Care Team, Patient and Family Palliative care teams ...

  10. Palliative care in patients with lung cancer

    PubMed Central

    Farbicka, Paulina

    2013-01-01

    Lung cancer accounts for 12% of all cancers and has the highest annual rate of mortality in men and women. The overall aim is cure or prolongation of life without evidence of disease. Almost 60% of patients at the moment of diagnosis are not eligible for radical treatment. Therefore soothing and supportive treatment is the only treatment of choice. Patients with lung cancer who have symptoms of dyspnea, chronic cough, severe pain, exhaustion and cachexia syndrome, fear and depression and significantly reduced physical and intellectual activities are qualified for inpatient or home palliative care. Knowledge about various methods used in palliative treatment allows one to alleviate symptoms that occur in an advanced stage of disease with an expected short survival period. Methods of oncological treatment that are often used in patients with advanced lung cancer include radiotherapy and chemotherapy. Drawing attention to the earlier implementation of palliative care is an objective of research carried out during recent years. Advances in surgical and conservative treatment of these patients have contributed to better outcomes and longer survival time. PMID:24596508

  11. Palliative care in cancer: managing patients' expectations.

    PubMed

    Ghandourh, Wsam A

    2016-12-01

    Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.

  12. [Palliative care of patients with terminal obstructive pulmonary disease].

    PubMed

    von Plessen, Christian; Nielsen, Thyge L; Steffensen, Ida E; Larsen, Shuruk Al-Halwai; Taudorf, Ebbe

    2011-10-17

    Terminal chronic obstructive pulmonary disease (COPD) and advanced cancer have similar prognosis and symptom burden. However, palliative care of patients with terminal COPD has been neglected in Denmark. We describe the symptoms of terminal COPD and suggest criteria for defining the palliative phase of the disease. Furthermore we discuss the prognostic and ethical challenges for patients, their families and their caregivers. Finally, we summarize the current evidence for palliative treatment of dyspnoea and ways to evaluate response to treatment.

  13. Extending palliative care to patients with Parkinson's disease.

    PubMed

    Wilcox, Sarah K

    2010-01-01

    Patients with Parkinson's disease have an illness which shortens their life and involves a heavy symptom burden for patient and carer. This article discusses some common palliative care issues pertinent to patients with Parkinson's disease.

  14. [Intestinal obstruction in cancer patients. Palliative treatment].

    PubMed

    Costa, I; Conçalves, F

    1997-05-01

    The treatment of intestinal obstruction (IO) in patients with advanced or terminal cancer represents an open and widely discussed topic in clinical oncology practice. As surgical palliation is a complex issue, the decision to advance with surgery should be made in consultation with the patients and family members. The prognostic factors, mainly the survival time and the surgical risks can be considered guideline indicators. If there is any possibility that surgery will be of benefit, the patient should be treated with intravenous fluids and nasogastric suction while appropriate radiological investigations are performed. When surgical intervention is contraindicated, symptomatic medical treatment should be started through continuous subcutaneous administration of analgesic and antiemetic drugs. Minor episodes of vomiting may occur, which do not trouble patients since the most distressing symptom, nausea, can be controlled. Dehydration may be avoided with a liquid diet in small quantities. In this way, it is possible to manage patients with IO for several weeks without the need of nasogastric suction or intravenous fluids. Percutaneous gastrostomy, nasogastric tube, or hypodermoclysis may be necessary for a small number of patients, principally with high obstruction, who have refractory symptoms.

  15. The benefits of rehabilitation for palliative care patients.

    PubMed

    Barawid, Edward; Covarrubias, Natalia; Tribuzio, Bianca; Liao, Solomon

    2015-02-01

    Palliative care requires an interdisciplinary team approach to provide the best care for patients with life-threatening illnesses. Like palliative medicine, rehabilitation also uses an interdisciplinary approach to treating patients with chronic illnesses. This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives.

  16. Concordance in the Assessment of Effectiveness of Palliative Care between Patients and Palliative Care Nurses in Malaysia: A Study with the Palliative Care Outcome Scale

    PubMed Central

    Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean

    2017-01-01

    Context: The Palliative Care Outcome Scale (POS) is an easy-to-use assessment tool to evaluate the effectiveness of palliative care. There is no published literature on the use of POS as an assessment tool in Malaysia. Aim: To define the concordance in the assessment of quality of life between patients with advanced cancers and their palliative care nurses using a Malay version of the POS. Settings and Design: This study was conducted in the palliative care unit of the Hospital Tuanku Ja'afar Seremban, Malaysia, from February 2014 to June 2014. Subjects and Methods: We adapted and validated the English version of the 3-day recall POS into Malay and used it to define the concordance in the assessment of quality of life between patients and palliative care nurses. Forty patients with advanced stage cancers and forty palliative care nurses completed the Malay POS questionnaire. Statistical Analysis Used: The kappa statistical test was used to assess the agreement between patients and their palliative care nurses. Results: Slight to fair concordance was found in all items, except for one item (family anxiety) where there was no agreement. Conclusions: The Malay version of the POS was well accepted and reliable as an assessment tool for evaluation of the effectiveness of palliative care in Malaysia. Slight to fair concordance was shown between the patients and their palliative care nurses, suggesting the needs for more training of the nurses. PMID:28216862

  17. Patient participation in palliative care decisions: An ethnographic discourse analysis.

    PubMed

    Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert

    2016-01-01

    The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize

  18. Patient participation in palliative care decisions: An ethnographic discourse analysis

    PubMed Central

    Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert

    2016-01-01

    The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize

  19. [Ethical challenge in palliative support of intensive care patients].

    PubMed

    Salomon, Fred

    2015-01-01

    Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.

  20. Palliative care in pediatric patients with hematologic malignancies.

    PubMed

    Humphrey, Lisa; Kang, Tammy I

    2015-01-01

    Children with advanced cancer, including those with hematologic malignancies, can benefit from interdisciplinary palliative care services. Palliative care includes management of distressing symptoms, attention to psychosocial and spiritual needs, and assistance with navigating complex medical decisions with the ultimate goal of maximizing the quality-of-life of the child and family. Palliative care is distinct from hospice care and can assist with the care of patients throughout the cancer continuum, irrespective of prognosis. While key healthcare organizations, including the Institute of Medicine, the American Academy of Pediatrics and the American Society of Clinical Oncology among many others endorse palliative care for children with advanced illness, barriers to integration of palliative care into cancer care still exist. Providing assistance with advance care planning, guiding patients and families through prognostic uncertainty, and managing transitions of care are also included in goals of palliative care involvement. For patients with advanced malignancy, legislation, included in the Patient Protection and Affordable Health Care Act allows patients and families more options as they make the difficult transition from disease directed therapy to care focused on comfort and quality-of-life.

  1. Palliative care for the terminal heart failure patient.

    PubMed

    Beard, Walter L; Long, R Craig; Geraci, Stephen A

    2014-01-01

    Heart failure is a chronic disease afflicting millions of patients worldwide. Advances in treatment have allowed sufferers to enjoy overall prolonged survival and enhanced quality of life. Yet, a consequence of these therapeutic successes is that more patients survive to end-stage disease, with severe symptoms, poor quality of life, and no options available to prolong their survival reasonably. End-stage heart failure patients require a comprehensive palliative approach to care during their final months, with treatment goals focusing on symptom relief. Often, specific heart failure therapies can further this cause and should be administered when appropriate to alleviate specific symptoms, while other general palliative measures should also be considered as with other terminal patients. End-of-life palliative strategies must conform to accepted principles of ethical care. Constant communication with patients and families is essential to achieve best treatment goals for this growing segment of the population.

  2. Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

    PubMed

    Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser

    2016-11-01

    To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. Descriptive comparative study.
. Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. A convenience sample of 34 family members of dying patients receiving palliative sedation. 
. A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
. Experiences of family members and time.
. Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
. Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
. Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a

  3. The dynamics of physical activity in palliative care patients.

    PubMed

    Pop, Teresa; Adamek, Jolanta

    2010-01-01

    Active and passive physical exercises in patients under palliative (long term) care in palliative wards and home hospices are a necessary means of prevention or reduction of pulmonary complications, disorders of respiratory function, vascular complications, disorders of lymphatic and venous function, and musculoskeletal dysfunction. The goal of this study was to assess the dynamics of physical activity in patients under long term care. The study group consisted of 60 patients staying in a palliative care ward or a home hospice. The dynamics of physical ability was assessed with the Karnofsky Performance Scale, and the quality of life was evaluated using the 6-point scale of the Rotterdam Symptom Checklist. The study was conducted over eight weeks, with patient information recorded once a week. Over consecutive weeks, physical activity increased by 10-20% in 20% of the participants, did not change in 36% of the participants, and 44% of the study group showed a decrease in activity. We found an increase in the quality of life in the consecutive weeks of the study and a correlation with the physical activity level. A higher score on the Karnofsky Scale corresponded with a higher quality of life measured in the six-point scale of the Rotterdam Symptom Checklist. Significant correlations were found both for specific weeks and for the entire study period. 1. The rehabilitation of palliative care patients resulted in a significant improvement in the quality of life. 2. The results indicate that there is a need to provide palliative patients with optimum rehabilitation regardless of their pre-rehabilitation clinical status. 3. The Karnofsky Performance Scale and the Rotterdam Symptom Checklist are strongly correlated with each other, which makes them robust investigative instruments for evaluating palliative patients.

  4. Palliative care for patients with acquired immunodeficiency syndrome.

    PubMed

    Kemp, C; Stepp, L

    1995-01-01

    This article provides a clinically-oriented overview of palliative care for patients with AIDS. Indicators of decreased survival time are divided into categories of infections/illnesses, clinical signs and symptoms, immunological and serological markers, and psychosocial factors. Primary symptoms in AIDS are discussed according to etiology and treatment. However, treatments of opportunistic infections per se are not directly addressed in this article. Problems discussed include pain, confusion, depression and anxiety, fatigue, fever, dyspnea, nausea and vomiting, diarrhea, wasting, and dehydration. The article also briefly addresses clinical and ethical questions and challenges presented by AIDS to hospice or palliative care providers, and the various stages of HIV infection.

  5. Palliative Care: Increasing the quality of life for patients and families… | NIH MedlinePlus the Magazine

    MedlinePlus

    ... JavaScript on. Feature: Palliative Care Palliative Care: Increasing the quality of life for patients and families… Past ... raise awareness about that. How are you spreading the word about palliative care for the young? We ...

  6. Public hospital palliative social work: addressing patient cultural diversity and psychosocial needs.

    PubMed

    Parrish, Monique; Cárdenas, Yvette; Epperhart, Regina; Hernandez, Jose; Ruiz, Susana; Russell, Linda; Soriano, Karolina; Thornberry, Kathryn

    2012-01-01

    Through creative practice innovations and a wide range of professional competencies, social work has contributed substantively to the development of the palliative care field (Harper, 2011 ). As the field continues to grow and evolve, new opportunities are emerging to profile palliative social work in diverse health care settings. A statewide initiative to spread palliative care in California's public hospitals provided just such an opportunity. Palliative social workers from six public hospitals participating in the initiative formed a group to discuss palliative social work in this unique hospital setting. This article highlights the group's insights and experiences as they address the significant cultural diversity and psychosocial needs of public hospital patients receiving palliative care.

  7. Palliative patients under anaesthesiological care: a single-centre retrospective study on incidence, demographics and outcome.

    PubMed

    Lassen, Christoph L; Aberle, Susanne; Lindenberg, Nicole; Bundscherer, Annika; Klier, Tobias W; Graf, Bernhard M; Wiese, Christoph H

    2015-11-13

    While anesthesiologist's involvement in palliative care has been widely researched, extensive data on palliative patients under anesthesiological care in the operating room is missing. This study was performed to assess the incidence, demographics, and outcome of palliative patients under anesthesiological care. We conducted a single-center retrospective chart review of all palliative patients under anesthesiological care at a university hospital in 1 year. Patients were classified as palliative if they fulfilled all predefined criteria (a) incurable, life-threatening disease, (b) progression of the disease despite therapy, (c) advanced stage of the disease with limited life-expectancy, (d) receiving or being in need of a specific palliative therapy. Demographics, periprocedural parameters, symptoms at evaluation, and outcome were determined using different medical records. Of 17,580 patients examined, 276 could be classified as palliative patients (1.57%). Most contacts with palliative patients occurred in the operating room (68.5%). In comparison to the non-palliative patients, procedures in palliative patients were significantly more often urgent or emergency procedures (39.1% vs. 27.1%., P < 0.001), and hospital mortality was higher (18.8% vs. 5.0%, P < 0.001). Preprocedural symptoms varied, with pain, gastrointestinal, and nutritional problems being the most prevalent. Palliative patients are treated by anesthesiologists under varying circumstances. Anesthesiologists need to identify these patients and need to be aware of their characteristics to adequately attend to them during the periprocedural period.

  8. Patients' perceptions of palliative surgical procedures: a qualitative analysis.

    PubMed

    Hamilton, Trevor D; Selby, Debbie; Tsang, Melanie E; Kim, Audrey; Wright, Frances C

    2017-08-01

    Patients with incurable malignancies can require surgical intervention. We prospectively evaluated patients treated with palliative surgery to qualitatively assess peri-operative outcomes. Eligible patients were assessed at a tertiary care cancer center. Demographic information and peri-operative morbidity and mortality were collected. Semi-structured qualitative interviews were obtained pre-operatively and post-operatively (1 month). Qualitative evaluation was performed using content analysis and an inductive approach. Twenty-eight patients were approached and 20 consented to interview. Data saturation was achieved after 14 patients. Median patient age was 58% and 56% were female. Peri-operative morbidity and mortality were 44% and 22%, respectively. "No other option" was seen as a dominant pre-operative theme (14 of 18). Other pre-operative themes included a "poor understanding of prognosis and the role of surgery in overall treatment plan". Post-operative themes included a "perceived benefit from surgery" and "satisfaction with decision-making", notwithstanding significant complications. Improved understanding of prognosis and the role of surgery were described post-operatively. Despite limited options and a poor understanding of prognosis, many patients perceived benefit from palliative surgery. However, peri-operative mortality was substantial. A robust and thorough patient-centered discussion about individual goals for surgery should be undertaken by surgeon, patient and family prior to embarking on a palliative operation.

  9. Fatigue in palliative care patients -- an EAPC approach.

    PubMed

    Radbruch, Lukas; Strasser, Florian; Elsner, Frank; Gonçalves, Jose Ferraz; Løge, Jon; Kaasa, Stein; Nauck, Friedemann; Stone, Patrick

    2008-01-01

    Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue. This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with

  10. The Palliative Care Information Act and Access to Palliative Care in Terminally ill Patients: A Retrospective Study

    PubMed Central

    Victoria, Kitty; Patel, Sarita

    2016-01-01

    Background: Studies have shown that over 50% of end-of-life discussions take place for the first time in the hospital and that terminally ill patients often have unrealistic views regarding the possible scope of treatment. The Palliative Care information Act (PCIA) was passed in an attempt to address the lack of access for terminally ill patients to palliative care services. A multi-database systematic review was performed on published studies from 2010 to present, and there were none found measuring the effectiveness of the PCIA. Objectives: We aimed to study the effect of the PCIA on access to palliative care services. Methods: We conducted a retrospective chart review of all terminally ill patients who died at Kingsbrook Jewish Medical Center from January 2010 to August 2013 in relation to passing of the PCIA. Results: Prelaw (prior to the law passing), 12.3% of the terminal patients received palliative care consults, 25% during the transition period (time between passing of law and when it came into effect) and 37.7% postlaw (after coming into effect) (P < 0.001). Conclusions: Legislation can have a significant effect on terminally ill patient's access to palliative care services and can change the culture of a hospital to be more pro-palliative for the appropriate populations. PMID:27803564

  11. Modalities of palliative care in hospitalized patients with advanced AIDS.

    PubMed

    Vincent, I; D'Hérouville, D; Moulin, P; Bugler, C; Fraval, J; Mallet, D; Salamagne, M H; Vildé, J L; Jodelet, D; Leport, C

    2000-04-01

    This prospective multidisciplinary survey started in October 1994. The survey assessed the modalities of care of hospitalized patients with advanced AIDS in an Infectious and Tropical Diseases Unit with regards to the practices of palliative care in a Palliative Care Unit. Seventy-eight (78) AIDS patients with CD4 < or = 30/mm3 who had 102 consecutive hospitalizations were recruited. Types (symptomatic or curative) and number of drugs administered to the patients, as well as biological and radiological investigations performed were recorded. Symptoms were concomitantly assessed on a weekly basis by self-evaluation of the patients themselves and by physicians. The results showed that the practices of care were different in the two units according to the specific goals and norms of each unit. A higher density of care was delivered at the Infectious and Tropical Diseases Unit. Symptoms assessed by both patients and physicians were underestimated by physicians in frequency and in intensity. In conclusion, an integrated approach including objective and subjective criteria should enable a better adjustment of the palliative and curative therapeutic strategies in advanced AIDS. These would concomitantly take into account the wishes of the patient and the goals regarding care in the unit where the patient is hospitalized.

  12. Association Between Palliative Care and Patient and Caregiver Outcomes

    PubMed Central

    Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J. Nicholas; Ernecoff, Natalie C.; Hanmer, Janel; Hoydich, Zachariah P.; Ikejiani, Dara Z.; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C.; Arnold, Robert M.; Heller, Lucas; Schenker, Yael

    2017-01-01

    IMPORTANCE The use of palliative care programs and the number of trials assessing their effectiveness have increased. OBJECTIVE To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. DATA SOURCES MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. STUDY SELECTION Randomized clinical trials of palliative care interventions in adults with life-limiting illness. DATA EXTRACTION AND SYNTHESIS Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy–palliative care scale (FACIT-Pal) instrument (range, 0–184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0–90 [best-worst]; MCID, 5.7 points). MAIN OUTCOMES AND MEASURES Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. RESULTS Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95%CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, −0.66; 95%CI, −1.25 to −0.07; ESAS mean difference, −10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated

  13. Palliative care for patients with end-stage liver disease.

    PubMed

    Larson, Anne M

    2015-05-01

    Liver disease results in over four million physician visits and over 750,000 hospitalizations per year in the USA. Those with chronic liver disease frequently progress to cirrhosis, end-stage liver disease (ESLD), and death. Patients with ESLD experience numerous complications, including muscle cramps, confusion (hepatic encephalopathy), protein calorie malnutrition, muscle wasting, fluid overload (ascites, edema), bleeding (esophagogastric variceal hemorrhage), infection (spontaneous bacterial peritonitis), fatigue, anxiety, and depression. Despite significant improvements in palliation of these complications, patients still suffer reduced quality of life and must confront the fact that their disease will often inexorably progress to death. Liver transplantation is a valid option in this setting, increasing the duration of survival and palliating many of the symptoms. However, many patients die waiting for an organ or are not candidates for transplantation due to comorbid illness. Others receive a transplant but succumb to complications of the transplant itself. Patients and families must struggle with simultaneously hoping for a cure while facing a life-threatening illness. Ideally, the combination of palliative care with life-sustaining therapy can maximize the patients' quality and quantity of life. If it becomes clear that life-sustaining therapy is no longer an option, these patients are then already in a system to help them with end-of-life care.

  14. Nursing workload for cancer patients under palliative care.

    PubMed

    Fuly, Patrícia Dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo

    2016-01-01

    To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. Analysis of 197 measures of the Nursing Activities Score (NAS) revealed a mean score of 43.09% and an association between the performance status of patients undergoing palliative care and the mean NAS scores. The results of the study point to the need to resize the team of the unit. The NAS has proven to be a useful tool in oncologic clinical units for patients undergoing palliative care. Verificar a carga de trabalho de enfermagem requerida por pacientes com câncer sob cuidados paliativos e possíveis associações entre as características demográficas e clínicas dos pacientes e a carga de trabalho de enfermagem. Trata-se de um estudo de abordagem quantitativa, transversal, prospectivo, desenvolvido na clínica de Tecido Ósseo Conectivo (TOC) da Unidade II do Instituto Nacional de Câncer José Alencar Gomes da Silva, com pacientes em cuidados paliativos. A análise de 197 medidas do Nursing Activities Score (NAS) revelou um escore médio de 43,09% e uma associação entre a performance status de pacientes em cuidados paliativos com os valores médios do NAS. Os resultados do estudo apontam para a necessidade de redimensionamento da equipe da Unidade. O NAS mostrou-se um instrumento passível de utilização em unidades clínicas oncológicas, com pacientes em cuidados paliativos.

  15. Twin pregnancy in a Fontan-palliated patient.

    PubMed

    Nair, Anupama; Radhakrishnan, Sitaraman; Iyer, Krishna S

    2016-08-01

    The Fontan connection, originally described in 1971, is used to provide palliation for patients with many forms of CHDs that cannot support a biventricular circulation. An increasing number of females who have undergone these connections in childhood are now surviving into adulthood and some are becoming pregnant. We report a case of a 29-year-old woman who presented with a twin pregnancy at 33 weeks of gestation. She had significant deterioration of her cardiovascular status before the twin babies were delivered by emergency caesarean section owing to associated obstetric complications. This report also highlights the various maternal and fetal complications occurring in pregnancy of Fontan-palliated patients and suggests the need for meticulous pre-conception counselling and strict perinatal care.

  16. Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

    PubMed

    Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

    2017-01-01

    To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P < .001). The mean length of stay in the hospital was similar for patients seen by palliative care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

  17. PALLIATIVE CARE AND SYMPTOM MANAGEMENT IN OLDER CANCER PATIENTS

    PubMed Central

    Alexander, Koshy; Goldberg, Jessica; Korc-Grodzicki, Beatriz

    2016-01-01

    SYNOPSIS Older cancer patients are best served by a multidisciplinary approach with Palliative Care (PC) playing an integral role. PC focuses on symptom control irrespective of its cause and should not be associated only with terminal care. It provides an additional layer of support in the care of the cancer patient with an emphasis on quality of life. In this article, we discuss the evaluation and management of pain and other common non-pain symptoms that occur in the elderly cancer patient, as well as end of life care. PMID:26614860

  18. Palliative Care and Symptom Management in Older Patients with Cancer.

    PubMed

    Alexander, Koshy; Goldberg, Jessica; Korc-Grodzicki, Beatriz

    2016-02-01

    Older patients with cancer are best served by a multidisciplinary approach with palliative care (PC) playing an integral role. PC focuses on symptom control irrespective of its cause and should not be associated only with terminal care. It provides an additional layer of support in the care of patients with cancer with an emphasis on quality of life. This article discusses the evaluation and management of pain and other common nonpain symptoms that occur in elderly patients with cancer, as well as end-of-life care.

  19. Costs of terminal patients who receive palliative care or usual care in different hospital wards.

    PubMed

    Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan

    2010-11-01

    In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.

  20. How family physicians address diagnosis and management of depression in palliative care patients.

    PubMed

    Warmenhoven, Franca; van Rijswijk, Eric; van Hoogstraten, Elise; van Spaendonck, Karel; Lucassen, Peter; Prins, Judith; Vissers, Kris; van Weel, Chris

    2012-01-01

    Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in family physicians' opinions regarding the recognition, diagnosis, and management of depression in palliative care patients. We conducted a focus group study in a sample of family physicians with varied practice locations and varying expertise in palliative care. Transcripts were analyzed independently by 2 researchers using constant comparative analysis in ATLAS.ti. In 4 focus group discussions with 22 family physicians, the physicians described the diagnostic and therapeutic process for depression in palliative care patients as a continuous and overlapping process. Differentiating between normal and abnormal sadness was viewed as challenging. The physicians did not strictly apply criteria of depressive disorder but rather relied on their clinical judgment and strongly considered patients' context and background factors. They indicated that managing depression in palliative care patients is mainly supportive and nonspecific. Antidepressant drugs were seldom prescribed. The physicians described difficulties in diagnosing and treating depression in palliative care, and gave suggestions to improve management of depression in palliative care patients in primary care. Family physicians perceive the diagnosis and management of depression in palliative care patients as challenging. They rely on open communication and a long-standing physician-patient relationship in which the patient's context is of great importance. This approach fits with the patient-centered care that is promoted in primary care.

  1. Polypharmacy in Older Patients ≥70 Years Receiving Palliative Radiotherapy.

    PubMed

    Nieder, Carsten; Mannsăker, Bărd; Pawinski, Adam; Haukland, Ellinor

    2017-02-01

    Many older cancer patients receive five or more daily medications (polypharmacy). The purpose of this study was to assess the prevalence of polypharmacy in older patients undergoing palliative radiotherapy and its influence on the risk of being unable to complete the prescribed number of fractions, as well as the 30-day mortality and overall survival. Retrospective review of 289 patients aged 70 years or older. The median and mean Charlson comorbidity index (11) was 2, ranging between 0-7 (presently treated cancer not included). The median and mean number of daily medications was 7, ranging between 0-18. Only 27% of patients used less than 5 daily medications. Corticosteroids were used by 59% of the patients and opioid analgesics by 55%. Comorbidity, but also symptom severity, as indexed by pain medication, correlated significantly with the prevalence of polypharmacy. In multivariate analysis, neither polypharmacy nor use of corticosteroids or opioid analgesics influenced overall survival. No trends were seen for 30-day mortality or failure to complete radiotherapy. Polypharmacy is a common phenomenon in older patients receiving palliative radiotherapy and it does not predict adverse radiotherapy outcomes. Copyright© 2017, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

  2. Providing Palliative Care to LGBTQ Patients.

    PubMed

    Barrett, Nina; Wholihan, Dorothy

    2016-09-01

    Nurses should be familiar with and equipped to address the challenges that arise when caring for lesbian, gay, bisexual, transgender, or queer-identified (LGBTQ) patients. LGBTQ individuals have increased rates of certain physical diseases and are at greater risk of suffering from stress-sensitive mental health issues. Negative social attitudes, widespread discrimination and stigma, physical and psychological victimization, and less social support with aging contribute to the complexity of care for these individuals. Open communication, welcoming and accepting attitudes and environments, and sensitivity to unique multidimensional issues improve care to LGBTQ patients with serious advanced illness. Nursing can reach this vulnerable minority and positively impact the quality of care.

  3. A good death from the perspective of palliative cancer patients.

    PubMed

    Kastbom, Lisa; Milberg, Anna; Karlsson, Marit

    2017-03-01

    Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden. Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis. Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death. Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches.

  4. Pulmonary Rehabilitation and Palliative Care for the Lung Cancer Patient

    PubMed Central

    Sun, Virginia; Koczywas, Marianna; Kim, Jae; Raz, Dan; Hurria, Arti; Hayter, Jennifer

    2015-01-01

    Pulmonary rehabilitation, as a quality of life intervention, has a role to play in palliative care for lung cancer patients. Combining the art and skills of clinical care, physiological, and behavioral tools, pulmonary rehabilitation can serve to rebuild the functional capacity of patients limited by breathlessness and deconditioning. Exercise programs are the primary tool used to restore and rebuild the patient's endurance by challenging the entire pathway of oxygen transport and improving gas exchange. Other tools of pulmonary rehabilitation include breathing retraining, self-management skills, airway clearance techniques, bronchodilitation, smoking cessation and oxygen therapy. Pulmonary rehabilitation is now becoming a part of supportive care for patients undergoing chemotherapy and radiation therapy. The ability to be more active without suffering the consequences of dyspnea on exertion boosts the patient's self-efficacy and allows for an improved quality of life, so that lung cancer patients can participate in their family lives during this therapeutic challenge. PMID:26709350

  5. The view of pulmonologists on palliative care for patients with COPD: a survey study

    PubMed Central

    Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y

    2017-01-01

    Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve

  6. Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

    PubMed

    Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil

    2015-11-02

    Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was

  7. Pneumocystis pneumonia in patients treated with long-term steroid therapy for symptom palliation: a neglected infection in palliative care.

    PubMed

    Yamaguchi, Takashi; Nagai, Yuki; Morita, Tatsuya; Kiuchi, Daisuke; Matsumoto, Mina; Hisahara, Ko; Hisanaga, Takayuki

    2014-12-01

    We report 3 cases of pneumocystis pneumonia (PCP) in patients with advanced cancer who received palliative care. All patients received long-term steroid therapy for symptom management. A diagnosis of PCP was based on clinical symptoms and a positive Pneumocystis jiroveci polymerase chain reaction test from induced sputum specimens. Despite appropriate treatment, only 1 patient recovered from PCP. Long-term steroid, often prescribed in palliative care settings, is the most common risk factor for PCP in non-HIV patients. Pneumocystis pneumonia may cause distressing symptoms such as severe dyspnea, and the mortality rate is high. Therefore, it is important to consider PCP prophylaxis for high-risk patients and to diagnose PCP early and provide appropriate treatment to alleviate PCP-related symptoms and avert unnecessary shortening of a patient's life expectancy.

  8. Experiences of patients and caregivers with early palliative care: A qualitative study.

    PubMed

    Hannon, Breffni; Swami, Nadia; Rodin, Gary; Pope, Ashley; Zimmermann, Camilla

    2017-01-01

    Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Qualitative grounded theory study using individual interviews. The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.

  9. Elderly Patients With Painful Bone Metastases Should be Offered Palliative Radiotherapy

    SciTech Connect

    Campos, Sarah; Presutti, Roseanna; Zhang Liying; Salvo, Nadia; Hird, Amanda; Tsao, May; Barnes, Elizabeth A.; Danjoux, Cyril; Sahgal, Arjun; Mitera, Gunita; Sinclair, Emily; DeAngelis, Carlo; Nguyen, Janet; Napolskikh, Julie; Chow, Edward

    2010-04-15

    Purpose: To investigate the efficacy of palliative radiotherapy (RT) in relieving metastatic bone pain in elderly patients. Methods and Materials: The response to RT for palliation of metastatic bone pain was evaluated from a prospective database of 558 patients between 1999 and 2008. The pain scores and analgesic intake were used to calculate the response according to the International Bone Metastases Consensus Working Party palliative RT endpoints. Subgroup analyses for age and other demographic information were performed. Results: No significant difference was found in the response rate in patients aged >=65, >=70, and >=75 years compared with younger patients at 1, 2, or 3 months after RT. The response was found to be significantly related to the performance status. Conclusion: Age alone did not affect the response to palliative RT for bone metastases. Elderly patients should be referred for palliative RT for their painful bone metastases, regardless of age, because they receive equal benefit from the treatment.

  10. Palliative care in patients with ovarian cancer and bowel obstruction.

    PubMed

    Daniele, Alberto; Ferrero, A; Fuso, L; Mineccia, M; Porcellana, V; Vassallo, D; Biglia, N; Menato, G

    2015-11-01

    Malignant bowel obstruction (MBO) is usually a pre-terminal event in patients with ovarian cancer. However, because of the lack of data in literature, decisions around surgical intervention, non-resectional procedures, or medical treatment of MBO in patients with ovarian cancer cannot be lightly undertaken. We analyzed medical and surgical procedures, performance status, nutritional status, cachexia, and their prognostic value in this group of patients. We retrospectively selected all consecutive patients with recurrent ovarian cancer who received medical or surgical treatment for MBO between October 2008 and January 2014 at the Academic Department of Gynecological Oncology of Mauriziano Hospital of Turin (Italy). We found 40 patients: 18 of them underwent medical treatment and 22 of them were submitted to surgery. In the group of surgery, the hospitalization was shorter (p 0.02), the pain reduction was more effective (p 0.001), the number of chemotherapy lines was higher (p 0.03), and re-obstruction was more rare (p 0.02). Between the two groups, we did not find any differences in post-palliation episodes of vomit (p 0.83), type of diet (p 0.34), ability to return home (p 0.72), and death setting (p 0.28). Median survival after palliation was longer in the group of surgery (p 0.025). Cachexia, low performance status, and poor nutritional status were significant predictors of worse survival after MBO, independently by the treatment. Surgery has to be considered in patients without serious contraindications; otherwise, a medical protocol, including antisecretory drugs, is the standard of care in frail patients.

  11. Age disparity in palliative radiation therapy among patients with advanced cancer.

    PubMed

    Wong, Jonathan; Xu, Beibei; Yeung, Heidi N; Roeland, Eric J; Martinez, Maria Elena; Le, Quynh-Thu; Mell, Loren K; Murphy, James D

    2014-09-01

    Palliative radiation therapy represents an important treatment option among patients with advanced cancer, although research shows decreased use among older patients. This study evaluated age-related patterns of palliative radiation use among an elderly Medicare population. We identified 63,221 patients with metastatic lung, breast, prostate, or colorectal cancer diagnosed between 2000 and 2007 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. Receipt of palliative radiation therapy was extracted from Medicare claims. Multivariate Poisson regression analysis determined residual age-related disparity in the receipt of palliative radiation therapy after controlling for confounding covariates including age-related differences in patient and demographic covariates, length of life, and patient preferences for aggressive cancer therapy. The use of radiation decreased steadily with increasing patient age. Forty-two percent of patients aged 66 to 69 received palliative radiation therapy. Rates of palliative radiation decreased to 38%, 32%, 24%, and 14% among patients aged 70 to 74, 75 to 79, 80 to 84, and over 85, respectively. Multivariate analysis found that confounding covariates attenuated these findings, although the decreased relative rate of palliative radiation therapy among the elderly remained clinically and statistically significant. On multivariate analysis, compared to patients 66 to 69 years old, those aged 70 to 74, 75 to 79, 80 to 84, and over 85 had a 7%, 15%, 25%, and 44% decreased rate of receiving palliative radiation, respectively (all P<.0001). Age disparity with palliative radiation therapy exists among older cancer patients. Further research should strive to identify barriers to palliative radiation among the elderly, and extra effort should be made to give older patients the opportunity to receive this quality of life-enhancing treatment at the end of life. Copyright © 2014 Elsevier Inc. All rights reserved.

  12. Age Disparity in Palliative Radiation Therapy Among Patients With Advanced Cancer

    SciTech Connect

    Wong, Jonathan; Xu, Beibei; Yeung, Heidi N.; Roeland, Eric J.; Martinez, Maria Elena; Le, Quynh-Thu; Mell, Loren K.; Murphy, James D.

    2014-09-01

    Purpose/Objective: Palliative radiation therapy represents an important treatment option among patients with advanced cancer, although research shows decreased use among older patients. This study evaluated age-related patterns of palliative radiation use among an elderly Medicare population. Methods and Materials: We identified 63,221 patients with metastatic lung, breast, prostate, or colorectal cancer diagnosed between 2000 and 2007 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. Receipt of palliative radiation therapy was extracted from Medicare claims. Multivariate Poisson regression analysis determined residual age-related disparity in the receipt of palliative radiation therapy after controlling for confounding covariates including age-related differences in patient and demographic covariates, length of life, and patient preferences for aggressive cancer therapy. Results: The use of radiation decreased steadily with increasing patient age. Forty-two percent of patients aged 66 to 69 received palliative radiation therapy. Rates of palliative radiation decreased to 38%, 32%, 24%, and 14% among patients aged 70 to 74, 75 to 79, 80 to 84, and over 85, respectively. Multivariate analysis found that confounding covariates attenuated these findings, although the decreased relative rate of palliative radiation therapy among the elderly remained clinically and statistically significant. On multivariate analysis, compared to patients 66 to 69 years old, those aged 70 to 74, 75 to 79, 80 to 84, and over 85 had a 7%, 15%, 25%, and 44% decreased rate of receiving palliative radiation, respectively (all P<.0001). Conclusions: Age disparity with palliative radiation therapy exists among older cancer patients. Further research should strive to identify barriers to palliative radiation among the elderly, and extra effort should be made to give older patients the opportunity to receive this quality of life-enhancing treatment at the end

  13. How Outpatient Palliative Care Teleconsultation Facilitates Empathic Patient-Professional Relationships: A Qualitative Study

    PubMed Central

    van Gurp, Jelle; van Selm, Martine; Vissers, Kris; van Leeuwen, Evert; Hasselaar, Jeroen

    2015-01-01

    Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists. Methods This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Results The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients’ daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief. Conclusions Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily

  14. A palliative approach to dialysis care: a patient-centered transition to the end of life.

    PubMed

    Grubbs, Vanessa; Moss, Alvin H; Cohen, Lewis M; Fischer, Michael J; Germain, Michael J; Jassal, S Vanita; Perl, Jeffrey; Weiner, Daniel E; Mehrotra, Rajnish

    2014-12-05

    As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients' informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach.

  15. Perceptions of palliative care among patients with advanced cancer and their caregivers

    PubMed Central

    Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

    2016-01-01

    Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. PMID:27091801

  16. Perceptions of palliative care among patients with advanced cancer and their caregivers.

    PubMed

    Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

    2016-07-12

    Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants' initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as "ongoing care" that improved their "quality of living" but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. © 2016 Canadian Medical Association or its licensors.

  17. Potential palliative care quality indicators in heart disease patients: A review of the literature.

    PubMed

    Mizuno, Atsushi; Miyashita, Mitsunori; Hayashi, Akitoshi; Kawai, Fujimi; Niwa, Koichiro; Utsunomiya, Akemi; Kohsaka, Shun; Kohno, Takashi; Yamamoto, Takeshi; Takayama, Morimasa; Anzai, Toshihisa

    2017-10-01

    In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

  18. Using a supportive care framework to understand and improve palliative care among cancer patients in Africa.

    PubMed

    Busolo, David S; Woodgate, Roberta L

    2016-06-01

    Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer

  19. Assessing palliative care needs: views of patients, informal carers and healthcare professionals.

    PubMed

    McIlfatrick, Sonja

    2007-01-01

    This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.

  20. Reducing radiotherapy waiting times for palliative patients: The role of the Advanced Practice Radiation Therapist.

    PubMed

    Job, Mary; Holt, Tanya; Bernard, Anne

    2017-08-29

    Palliative radiotherapy is effective in reducing symptom burden and improving quality of life in patients with symptomatic metastatic cancer and should be delivered in a timely manner. The aim of this study was to determine whether referring patients directly to a Palliative Advanced Practice Radiation Therapist (APRT) improves access to palliative radiotherapy and reduces time from referral to treatment. At Radiation Oncology Mater Center (ROMC) in Brisbane, Australia a new referral pathway was developed which involved patients requiring palliative radiotherapy, being referred directly to the APRT from a single external hospital medical oncology and palliative care departments. Over a 5 months period, patient demographics and time in working days from referral to treatment were compared for consecutive palliative patients seen within our department. Patients were stratified by method of referral i.e. via the new referral pathway (NP) or via standard referral pathway (SP). Between October 2014 and March 2015, a total of 150 patients were referred for palliative radiotherapy. Of these patients, 48 were referred and processed via the NP. There was a significant reduction in the number of days from referral to treatment for patients referred through the NP. Patients referred through the NP via the APRT had a mean and median wait time of 3.5 and 3 days respectively compared with 8.1 and 5 days for patients referred through the SP (P = <0.001). Patients were also more likely to have the treatment completed with less visits to the hospital (P < 0.001). The new referral pathway utilising a dedicated palliative APRT decreased waiting times for patients receiving palliative radiotherapy and improved timely access to the radiotherapy service for both referrers and patients. © 2017 The Authors and State of Queensland. Journal of Medical Radiation Sciences published by John Wiley & Sons Australia, Ltd on behalf of Australian Society of Medical Imaging and Radiation Therapy

  1. A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life

    PubMed Central

    Moss, Alvin H.; Cohen, Lewis M.; Fischer, Michael J.; Germain, Michael J.; Jassal, S. Vanita; Perl, Jeffrey; Weiner, Daniel E.; Mehrotra, Rajnish

    2014-01-01

    As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients’ informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. PMID:25104274

  2. Bleeding risk of terminally ill patients hospitalized in palliative care units: the RHESO study.

    PubMed

    Tardy, B; Picard, S; Guirimand, F; Chapelle, C; Danel Delerue, M; Celarier, T; Ciais, J-F; Vassal, P; Salas, S; Filbet, M; Gomas, J-M; Guillot, A; Gaultier, J-B; Merah, A; Richard, A; Laporte, S; Bertoletti, L

    2017-03-01

    Essentials Bleeding incidence as hemorrhagic risk factors are unknown in palliative care inpatients. We conducted a multicenter observational study (22 Palliative Care Units, 1199 patients). At three months, the cumulative incidence of clinically relevant bleeding was 9.8%. Cancer, recent bleeding, thromboprophylaxis and antiplatelet therapy were independent risk factors.

  3. Are UK primary care teams formally identifying patients for palliative care before they die?

    PubMed

    Harrison, Nadine; Cavers, Debbie; Campbell, Christine; Murray, Scott A

    2012-05-01

    The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification. To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death. Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed. In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital. Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.

  4. Pharmacological interventions for pruritus in adult palliative care patients.

    PubMed

    Siemens, Waldemar; Xander, Carola; Meerpohl, Joerg J; Buroh, Sabine; Antes, Gerd; Schwarzer, Guido; Becker, Gerhild

    2016-11-16

    This is an update of the original Cochrane review published in 2013 (Issue 6). Pruritus occurs in patients with disparate underlying diseases and is caused by different pathologic mechanisms. In palliative care patients, pruritus is not the most prevalent but is one of the most puzzling symptoms. It can cause considerable discomfort and affects patients' quality of life. To assess the effects of different pharmacological treatments for preventing or treating pruritus in adult palliative care patients. For this update, we searched CENTRAL (the Cochrane Library), and MEDLINE (OVID) up to 9 June 2016 and Embase (OVID) up to 7 June 2016. In addition, we searched trial registries and checked the reference lists of all relevant studies, key textbooks, reviews and websites, and we contacted investigators and specialists in pruritus and palliative care regarding unpublished data. We included randomised controlled trials (RCTs) assessing the effects of different pharmacological treatments, compared with a placebo, no treatment, or an alternative treatment, for preventing or treating pruritus in palliative care patients. Two review authors independently assessed the identified titles and abstracts, performed data extraction and assessed the risk of bias and methodological quality. We summarised the results descriptively and quantitatively (meta-analyses) according to the different pharmacological interventions and the diseases associated with pruritus. We assessed the evidence using GRADE (Grading of Recommendations Assessment, Development and Evaluation) and created 10 'Summary of findings' tables. In total, we included 50 studies and 1916 participants in the review. We added 10 studies with 627 participants for this update. Altogether, we included 39 different treatments for pruritus in four different patient groups.The overall risk of bias profile was heterogeneous and ranged from high to low risk. However, 48 studies (96%) had a high risk of bias due to low sample size

  5. Hospice palliative care volunteers: the benefits for patients, family caregivers, and the volunteers.

    PubMed

    Claxton-Oldfield, Stephen

    2015-06-01

    Terminally ill patients and family caregivers can benefit greatly from the support and care provided by trained hospice palliative care volunteers. The benefits of doing this kind of volunteer work also extend to the volunteers themselves, who often say they receive more than they give from the patients/families they are "privileged" to be with. The purpose of this article is to demonstrate how hospice palliative care volunteerism benefits both the patients and families who utilize this service as well as the volunteers. A review of studies demonstrating how terminally ill patients, and especially family caregivers, can benefit from the use of hospice palliative care volunteers and how the volunteers themselves benefit from their experiences. Terminally ill patients and families receive many benefits from using the services of hospice palliative care volunteers, including emotional support, companionship, and practical assistance (e.g., respite or breaks from caregiving). Volunteering in hospice palliative care also provides many benefits for the volunteers, including being able to make a difference in the lives of others, personal growth, and greater appreciation of what is really important in life. More needs to be done to promote the value of hospice palliative care volunteers to those who can really benefit from their support and care (i.e., patients and their families) as well as to help people recognize the potential rewards of being a hospice palliative care volunteer. It is a win-win situation.

  6. Palliative treatment of patients with malignant structures of esophagus

    NASA Astrophysics Data System (ADS)

    Zavodnov, Victor Y.; Kuzin, M. I.; Kharnas, Sergey S.; Linkov, Kirill G.; Loschenov, Victor B.; Stratonnikov, Alexander A.; Posypanova, Anna M.

    1996-01-01

    Photodynamic therapy with the use of laser endoscopic spectrum analyzer (LESA-5), spectral- analyzing video-imaging system, Kr laser and various types of catheters for different localizations and different geometry of tumor, and phthalocyanine aluminum photosensitizers in patients with malignant strictures of esophagus is discussed. Photodynamic therapy was carried out to four patients: with esophageal cancer (3 patients) and gastric cancer with infiltration of lower esophagus (1 patient). All patients suffered from severe dysphagia. Photosensitizer was used in a dose 1-1.5 mg/kg of weight. Usually we used 3-4 seances of laser treatment 10-30 minutes long. The accumulation of photosensitizer was controlled by LESA-5. Laser induced fluorescent image was monitored by the video-imaging system in order to control laser treatment. There were no side-effects. The results show high efficiency of photodynamic therapy. There was marked reduction of dysphagia symptoms in all cases. It seems that photodynamic therapy is a good alternative to palliative surgical treatment of patients with malignant strictures of esophagus.

  7. Two is a perfect number: Patient-doctor relationship and patient attachment style in palliative care.

    PubMed

    Zaporowska-Stachowiak, Iwona; Stachowiak, Katarzyna; Stachnik, Katarzyna

    2017-08-01

    We tested the association between the palliative patient's attachment style and the patient-doctor relationship, by means of Revised Adult Attachment Scale and a self-designed, patient-doctor relationship questionnaire. The study included 110 (52 M, 58 F) cancer, hospice patients, aged 36-80 years. We observed 54 percent of secure, 18 percent of dismissive, 9 percent of preoccupied, and 19 percent of fearful styles. Securely attached patients developed significantly ( p < .05) better relationships with doctors than insecure patients. There was no difference in the quality of the patient-doctor relationship among dismissive versus preoccupied versus fearful patients. We argue that attachment theory should be applied in palliative care to improve patients' quality of life and dying.

  8. Herbal use among cancer patients during palliative or curative chemotherapy treatment in Norway.

    PubMed

    Engdal, Silje; Steinsbekk, Aslak; Klepp, Olbjørn; Nilsen, Odd Georg

    2008-07-01

    This survey aims to explore the differences between cancer patients undergoing chemotherapeutic treatment with palliative or curative intention with respect to concurrent herbal use, experiences of adverse effects, motives of herbal intake, and communication about herbal use with health care providers. One hundred and twelve adult cancer patients from the west coast of Central Norway, currently undergoing chemotherapeutic treatment, were recruited to a cross-sectional descriptive survey. Palliative and curative patients used herbal remedies concurrent with chemotherapy equally frequent (37% and 38%). One palliative patient reported adverse effects when doubling the dose of injected mistletoe used. Garlic was only used by palliative patients (p = 0.009) who also tended to have a more frequent everyday herbal use (78% vs 67%, respectively) than curative patients (p = 0.075). Curative patients, however, used herbal remedies more often to counteract adverse reactions (31% vs 3%, respectively; p = 0.026). A bivariate logistic regression, which was adjusted for age, showed that palliative patients used herbal remedies more frequently to improve their immune system (adjusted OR = 7.5, 95% CI = 1.1-49.7). This is the first survey comparing concurrent herbal use between cancer patients undergoing palliative or curative chemotherapy. Both groups frequently use herbal remedies concurrent with chemotherapy, but with a slightly different intent. The frequent concurrent use emphasizes the need for clinicians to include questions on complementary and alternative medicine in routine history taking and for further studies on possible herb-drug interactions among the cancer patient.

  9. Providing palliative care for the newly diagnosed cancer patient: concepts and resources.

    PubMed

    Gabriel, Michelle

    2008-04-01

    Palliative care has evolved from end-of-life care following exhaustion of curative therapy to care across the cancer-management continuum. Often initiated concurrently with curative care at the time of diagnosis, palliative care ensures both effective symptom management and the best possible quality of life in four key domains-physical, psychological, social, and spiritual. The significant growth and development of palliative care in the United States is evident in that one in four hospitals now has a palliative care program, palliative medicine is now recognized as an official medical subspecialty by the American Board of Medical Specialties, and national programs offer comprehensive continuing education in palliative care for nurses and physicians. The oncology nurse who provides palliative care does so as part of a multidisciplinary team that includes not only physicians but also can involve chaplains, massage therapists, pharmacists, nutritionists, and other specialists. This article provides resources and reviews and highlights pertinent palliative care issues to guide oncology nurses managing newly diagnosed cancer patients.

  10. Role of Radiation Therapy in Palliative Care of the Patient With Cancer

    PubMed Central

    Lutz, Stephen T.; Jones, Joshua; Chow, Edward

    2014-01-01

    Radiotherapy is a successful, time-efficient, well-tolerated, and cost-effective intervention that is crucial for the appropriate delivery of palliative oncology care. The distinction between curative and palliative goals is blurred in many patients with cancer, requiring that treatments be chosen on the basis of factors related to the patient (ie, poor performance status, advanced age, significant weight loss, severe comorbid disease), the cancer (ie, metastatic disease, aggressive histology), or the treatment (ie, poor response to systemic therapy, previous radiotherapy). Goals may include symptom relief at the site of primary tumor or from metastatic lesions. Attention to a patient's discomfort and transportation limitations requires hypofractionated courses, when feasible. Innovative approaches include rapid response palliative care clinics as well as the formation of palliative radiotherapy specialty services in academic centers. Guidelines are providing better definitions of appropriate palliative radiotherapy interventions, and bone metastases fractionation has become the first radiotherapy quality measure accepted by the National Quality Forum. Further advances in the palliative radiation oncology subspecialty will require integration of education and training between the radiotherapy and palliative care specialties. PMID:25113773

  11. Questions posed to hospital chaplains by palliative care patients.

    PubMed

    Strang, Susan; Strang, Peter

    2002-12-01

    Questions of vital importance are actualized when facing one's own death. Studies on patient need for a hospital chaplaincy as an integral part of hospital care are lacking. To categorize the three most important questions patients pose to hospital chaplains at the end of life and to assess the degree to which hospital staff should be able to handle them. A Swedish national survey using an open-ended questionnaire and content analysis. One hundred seventy-two Swedish hospital chaplains (national coverage, 74% response rate). Categories developed from open-ended questions. Categories of questions posed to hospital chaplains. Five main categories were identified: meaning (34%); death and dying (21%); pain and illness (13%); relationships (15%); and religious issues (8%). Questions of a general existential nature concerned with meaning-related issues and with death and dying were frequently the primary issue. Many questions dealt with pain, fear of suffocation, and illness in general (i.e., questions that the palliative team should be able to handle). Only 8% of the issues were explicitly religious and these were often third-hand choices. The role of the hospital chaplaincy has changed. Today it entails specialized competence and is needed in existential discussions with different patients in crisis, regardless of their personal faith or lack of faith. Nonetheless, physicians and other staff members should be able to handle many of the questions that are of a more general/medical character.

  12. The lived experience of Lebanese oncology patients receiving palliative care.

    PubMed

    Doumit, Myrna A A; Abu-Saad Huijer, Huda; Kelley, Jane H

    2007-09-01

    The purpose of this study was to uncover the lived experience of Lebanese oncology patients receiving palliative care. The study design was based on the Utrecht School of Phenomenology based on the Dutch school of phenomenology. This study followed purposeful sampling in which ten participants, six women, and four men, with a mean age of 54.4 years were selected. In-depth semi-structured interviews along with observation field notes were used as the source for data collection. Data were analyzed using the hermeneutic phenomenological approach based on the Utrecht School of Phenomenology. The participants highlighted their distress from being dependent; their dislike for pity; their worry for the family and the worry about the family's worry; their reliance on God and divinity; their dislike of the hospital stay; their need to be productive; their fear of pain; and their need to communicate. Specific nursing actions related to the themes would include exploring patients' ideas, beliefs, and experiences regarding pain, and improved communication among patient, family, and the health care providers.

  13. Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

    PubMed

    Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit

    2017-10-01

    Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

  14. Nutritional support and quality of life in cancer patients undergoing palliative care.

    PubMed

    Prevost, V; Grach, M-C

    2012-09-01

    In palliative care, the nutrition provided has to be tailored to the patient's needs, enhancing patient comfort and quality of life (QoL). We conducted a literature search to review methods of measuring QoL, and modalities of nutritional intervention and their influence on QoL of cancer patients in palliative care. Original papers published in English were selected from PubMed database by using the search terms, palliative medicine, cancer, nutrition and quality of life. Specific tools that are particularly recommended to assess QoL in a palliative care setting are reviewed. The main goal in palliative care is to maintain oral nutrition by providing nutritional counselling. Enteral nutritional support showed inconsistent effects on survival and QoL. An evidence-base for parenteral nutrition is still lacking. Ethical considerations concerning provision of food and hydration in end-of-life care are discussed. Nutritional status should be assessed early and regularly during treatment using appropriate tools. In the particularly acute context of palliative care, optimal patient management requires adequate education and counselling to patients and families. Meaningful interactions between the patient, caregivers and medical team would also increase the chance of resolving nutrition-related issues and help to fulfil each patient's specific nutritional needs and thus improve the QoL.

  15. Caregivers burden in palliative care patients: a problem to tackle.

    PubMed

    Veloso, Verónica Inés; Tripodoro, Vilma Adriana

    2016-12-01

    To revise the family caregiver's burden concept and to understand the implications for the patient, family and healthcare system. We analyzed recent literature in three main areas: the role of family caregiver at the end of life, the family caregiver's burden and the involvement of social care networks. The family caregiver often accepts the caring as a natural action, presumably imposed by the society. A recent review described seven main roles of care which, according to family system and society, consist of different tasks and activities. To assume this role is not stress free. It is likely to develop a 'burden' by the assumed task. Family members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasks fulfiller, minimizer and managing suffering, palliative care facilitator and responsible for the continuity of care, apprentice and participant of health teams. The family caregiver often gives priority to the problems of his dependent family member, becoming almost 'invisible' to the health system. It should also be consider the relevance of this issue into future bereavement process. Considering all these aspects, the family caregiver is often considered by the healthcare teams as 'overall tasks' performers'.

  16. [Palliative care: communication as a strategy of care for the terminal patient].

    PubMed

    de Andrade, Cristiani Garrido; da Costa, Solange Fátima Geraldo; Lopes, Maria Emília Limeira

    2013-09-01

    Palliative care involves an approach in the field of care for terminal patients and their families that seeks to assure them better quality of life by establishing good communication. The scope of this study was to verify how nurses use communication in the field of palliative care when assisting patients in the terminal phase. This is exploratory research of a qualitative nature in which 28 nurses working in wards of a hospital in the city of Joao Pessoa in the State of Paraíba participated in the period from August to October 2012. A form was used for data collection that was then analyzed using the content analysis technique. Three categories emerged from the analysis of the material: "palliative care and communication - interpersonal relationship between the nurse and the terminal patient"; "communication in palliative care as a strategy for strengthening the bond between the nurse and the terminal patient"; and "the importance of communication between the nurse and the family of the terminal patient under palliative care." The conclusion reached was that communication is seen to be an effective element of care for the patient in the terminal phase and it is extremely important for the promotion of palliative care.

  17. Exploring district nurses' reluctance to refer palliative care patients for physiotherapy.

    PubMed

    Nelson, Lesley Ann; Hasson, Felicity; Kernohan, W George

    2012-04-01

    To explore district nurses' beliefs regarding referral of a patient receiving palliative care for physiotherapy. Three focus groups, guided by the Theory of Planned Behaviour, were undertaken with a purposive sample of 16 district nurses. All were audio-recorded, transcribed, and subject to content analysis. Nine beliefs were identified as influencing referral decisions, the majority of which were negative, such as the belief that physiotherapists lack palliative care skills and could foster false hope. Additional barriers to referral included a lack of contact and communication with physiotherapists, poor knowledge or experience of physiotherapy, unsuitable referral systems, and poor availability of services. These findings help to explain why so few patients receiving palliative care access rehabilitation services. To ensure that patients have appropriate access to palliative rehabilitation, there needs to be consideration of how the identified barriers can be overcome.

  18. Palliative sedation in dying patients: "we turn to it when everything else hasn't worked".

    PubMed

    Lo, Bernard; Rubenfeld, Gordon

    2005-10-12

    Despite skilled palliative care, some dying patients experience distressing symptoms that cannot be adequately relieved. A patient with metastatic breast cancer, receiving high doses of opioids administered to relieve pain, developed myoclonus. After other approaches proved ineffective, palliative sedation was an option of last resort. The doctrine of double effect, the traditional justification for palliative sedation, permits physicians to provide high doses of opioids and sedatives to relieve suffering, provided that the intention is not to cause the patient's death and that certain other conditions are met. Such high doses are permissible even if the risk of hastening death is foreseen. Because intention plays a key role in this doctrine, clinicians must understand and document which actions are consistent with an intention to relieve symptoms rather than to hasten death. The patient or family should agree with plans for palliative sedation. The attending physician needs to explain to them, as well as to the medical and nursing staff, the details of care and the justification for palliative sedation. Because cases involving palliative sedation are emotionally stressful, the patient, family, and health care workers can all benefit from talking about the complex medical, ethical, and emotional issues they raise.

  19. Palliative care rehabilitation survey: a pilot study of patients' priorities for rehabilitation goals.

    PubMed

    Schleinich, M A; Warren, S; Nekolaichuk, C; Kaasa, T; Watanabe, S

    2008-10-01

    Rehabilitation in palliative care is often overlooked. Settings that do consider occupational or physical therapy for palliative care patients often consult to therapists with competing caseloads. Few therapists specialise in palliative care, but nearly all ask, 'What needs doing'? and 'How well am I doing that'? No existing instruments address their questions. The objective is to develop and test a questionnaire for identifying patient goals and priorities for rehabilitation in palliative care. A questionnaire representing 11 domains of the Canadian Model of Occupational Performance was designed and pilot tested at four palliative care sites. Each question reflected a typical rehabilitation intervention in palliative care. Patients were asked to rate how important each of these interventions was on a numerical rating scale (0, not important-10, extremely important). Open-ended questions captured verbatim comments regarding thoughts of rehabilitation. The questionnaire was tested for test-retest reliability with two interviews approximately 1 week apart. Forty patients participated in the first interview and 32 in the second. Eight of eleven domain sub-scores achieved an intra-class correlation coefficient of 0.6 or higher. The highest means were for the physical (8.2), institutional (7.8) and self-care (7.8) domains on the first interview and for the spiritual domain (7.9) on the second interview. Suggestions are provided to shorten the questionnaire and strengthen validity. This work furthers the understanding of the role of rehabilitation in palliative care. It also illustrates the feasibility of involving palliative care patients in research that contributes to setting standards and measuring quality of service.

  20. [Progress in Palliative Care Benefit of Elderly Patients with Non-small Cell Lung Cancer].

    PubMed

    Jiang, Shantong; Li, Pingping

    2015-07-01

    Lung cancer is the leading cause of death among all cancers in China. It also has the highest incidence when compared to other cancers. Almost half of all lung cancers occur over 70-year-old. Approximately 85% of all lung cancers are non-small cell lung cancer (NSCLC). The majority of patients are advanced lung cancer. Due to the unique alterations in physiology, elderly patients are at a greater risk of toxicity from chemotherapy. Palliative care as a special medical care is an important treatment for elderly patients with advanced NSCLC. Low-dose palliative radiotherapy can improve respiratory symptoms in elderly patients with NSCLC, with the tolerated side effects. Elderly patients with epidermal growth factor receptor (EGFR) mutation can benefit from gefitinib and have a good tolerate of erlotiib. Cryocare Surgical System has an increasing trend of application in the treatment of elderly patients with NSCLC. Chinese medicine has effects in improving clinical symptoms and reducing side effects of chemotherapy, it can also improve the quality of life in these patients. Psychosocial support therapy can alleviate the burden of patients with NSCLC to some extent, but needs to improve its systematicness. Assessment and the time of palliative care are two important factors which determine the outcome of patients. We introduce the progress in palliative care benefit of elderly NSCLC, in order to provide the basis for palliative care of elderly NSCLC.

  1. Ethical dilemmas faced by hospice nurses when administering palliative sedation to patients with terminal cancer.

    PubMed

    De Vries, Kay; Plaskota, Marek

    2017-04-01

    Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients. Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data. Facilitating a "peaceful death" was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be "comfortable," "relaxed," and "calm" at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, "juggling the drugs," "causing the death," sedating young people, the family "requesting" sedation, and believing that hospice is a place where death is hastened. Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

  2. Public, patient and carers' views on palliative and end-of-life care in India.

    PubMed

    Ramasamy Venkatasalu, M; Sirala Jagadeesh, N; Elavally, S; Pappas, Y; Mhlanga, F; Pallipalayam Varatharajan, R

    2017-08-30

    To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may

  3. Frequently Asked Questions (Palliative Care: Conversations Matter)

    MedlinePlus

    ... Questions Frequently Asked Questions: What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ... for patients and families. Who provides pediatric palliative care? Every palliative care team is different. The team ...

  4. Quality of life in patients with esophageal stenting for the palliation of malignant dysphagia

    PubMed Central

    Diamantis, Giorgio; Scarpa, Marco; Bocus, Paolo; Realdon, Stefano; Castoro, Carlo; Ancona, Ermanno; Battaglia, Giorgio

    2011-01-01

    Incidence of esophageal cancer (EC) is rising more rapidly in the Western world than that of any other cancer. Despite advances in therapy, more than 50% of patients have incurable disease at the time of presentation. This precludes curative treatment and makes palliative treatment a more realistic option for most of these patients. Dysphagia is the predominant symptom in more than 70% of patients with EC and although several management options have been developed in recent years to palliate this symptom, the optimum management is not established. Self-expanding metal stents (SEMS) are a well-established palliation modality for dysphagia in such patients. Health-related quality of life (HRQoL) is becoming a major issue in the evaluation of any therapeutic or palliative intervention. To date, only a few published studies can be found on Medline examining HRQoL in patients with advanced EC treated with SEMS implantation. The aim of this study was to review the impact on HRQoL of SEMS implantation as palliative treatment in patients with EC. All Medline articles regarding HRQoL in patients with advanced EC, particularly those related to SEMS, were reviewed. In most studies, relief of dysphagia was the only aspect of HRQoL being measured and SEMS implantation was compared with other palliative treatments such as brachytherapy and laser therapy. SEMS insertion provides a swift palliation of dysphagia compared to brachytherapy and no evidence was found to suggest that stent implantation is different to laser treatment in terms of improving dysphagia, recurrent dysphagia and better HRQoL, although SEMS insertion has a better technical success rate and also reduces the number of repeat interventions. PMID:21245986

  5. Quality of life in patients with esophageal stenting for the palliation of malignant dysphagia.

    PubMed

    Diamantis, Giorgio; Scarpa, Marco; Bocus, Paolo; Realdon, Stefano; Castoro, Carlo; Ancona, Ermanno; Battaglia, Giorgio

    2011-01-14

    Incidence of esophageal cancer (EC) is rising more rapidly in the Western world than that of any other cancer. Despite advances in therapy, more than 50% of patients have incurable disease at the time of presentation. This precludes curative treatment and makes palliative treatment a more realistic option for most of these patients. Dysphagia is the predominant symptom in more than 70% of patients with EC and although several management options have been developed in recent years to palliate this symptom, the optimum management is not established. Self-expanding metal stents (SEMS) are a well-established palliation modality for dysphagia in such patients. Health-related quality of life (HRQoL) is becoming a major issue in the evaluation of any therapeutic or palliative intervention. To date, only a few published studies can be found on Medline examining HRQoL in patients with advanced EC treated with SEMS implantation. The aim of this study was to review the impact on HRQoL of SEMS implantation as palliative treatment in patients with EC. All Medline articles regarding HRQoL in patients with advanced EC, particularly those related to SEMS, were reviewed. In most studies, relief of dysphagia was the only aspect of HRQoL being measured and SEMS implantation was compared with other palliative treatments such as brachytherapy and laser therapy. SEMS insertion provides a swift palliation of dysphagia compared to brachytherapy and no evidence was found to suggest that stent implantation is different to laser treatment in terms of improving dysphagia, recurrent dysphagia and better HRQoL, although SEMS insertion has a better technical success rate and also reduces the number of repeat interventions.

  6. Caring for patients with malignant pleural mesothelioma in Japan: evaluation of a Palliative Care Educational Program.

    PubMed

    Nagamatsu, Yasuko; Nakayama, Yukiko; Clayson, Helen; Natori, Yuji; Ohata, Misato; Matsuura-Moriguchi, Shino; Porter, Sarah E

    2014-01-01

    This study evaluated the effect of an Educational PROGRAM on Palliative Care for MPM for Nurses in Japan. The 5-h program consisted of lectures and care planning group work. This study used a pretest-posttest design with a single cohort of nurses and included a Difficulties in Palliative Care for Patients with MPM (DPCMPM) Scale with 15 items. The pre- and posttest scores were compared using a t-test. We included 27 female nurses with a mean of 14.4 years of nursing experience. In 12 of 15 DPCMPM items, the posttest difficulty scores were lower than the pretest scores. Participants highly evaluated the program for validity, clarity, clinical usefulness, and the facilitators. The Palliative Care for MPM Handbook for Nurses was developed as an educational tool for clinical settings. The Educational PROGRAM on Palliative Care for MPM for Nurses was effective in reducing nursing difficulties.

  7. [Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care].

    PubMed

    Nyirő, Judit; Hauser, Péter; Zörgő, Szilvia; Hegedűs, Katalin

    2017-07-01

    Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.

  8. [Communication strategies used by health care professionals in providing palliative care to patients].

    PubMed

    Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes

    2012-06-01

    The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.

  9. Future care planning: a first step to palliative care for all patients with advanced heart disease.

    PubMed

    Denvir, M A; Murray, S A; Boyd, K J

    2015-07-01

    Palliative care is recommended for patients with end-stage heart failure with several recent, randomised trials showing improvements in symptoms and quality of life and more studies underway. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end-of-life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Larger, randomised trials are needed to assess the impact on patient outcomes and experiences.

  10. The Influence of Palliative Care on Quality of Life in Patients with Lung Cancer

    PubMed Central

    Delibegovic, Adnan; Sinanovic, Osman; Galic, Gordan; Sabic, Adela; Sabic, Dzevad

    2016-01-01

    Objective: Objective of this work is to determine influence of palliative care on the quality of life in patients with lung cancer. Subjects and Methods: Our study group included 40 patients, consecutively selected, which is determined by symptomatic treatment and hospitalized at the Department of Palliative Care of University Clinical Center Tuzla. The control group consisted of 40 patients who had a diagnosis of lung cancer treated at home by an authorized ambulance Health Center Tuzla. Tests in both groups were carried out using the test SF-36 scale for assessing quality of life in period of two weeks. Two-stage test was performed, initially, immediately after disease was diagnosed, and two weeks later. Results: All life quality parameters (general, physical and emotional) were better in second test, in patients who were situated in the department of palliative care (study group) (p<0.0001). In the area of physical health (physical function, physical limitations, pain, general health), in patients who have resided in the department of palliative care (study group), showed a statistically significant improvement in all the aspects (p<0.0001). In the study patients all aspects of mental health were statistically significantly improved after two weeks being in department (p<0.0001). Conclusion: Two weeks treatment of patients with lung cancer in the Department of Palliative Care significantly improve all general aspects of quality of life. PMID:28144191

  11. Management of Hypoglycemia in Nondiabetic Palliative Care Patients: A Prognosis-Based Approach

    PubMed Central

    Kok, Victor C.; Lee, Ping-Hsueh

    2016-01-01

    Hypoglycemia due to underlying terminal illness in nondiabetic end-of-life patients receiving palliative care has not been fully studied. For example, we do not have adequate information on the frequency of spontaneous hypoglycemia in patients as occurs during the different stages of palliative care. Depending on the case-mix nature of the palliative care ward, at least 2% of palliative care patients may develop hypoglycemia near the end of life when the remaining life expectancy counts down in days. As many as 25%–60% of these patients will neither have autonomic response nor have neuroglycopenic symptoms during a hypoglycemic episode. Although it is not difficult to diagnose and confirm a true hypoglycemia when it is suspected clinically, an episode of hypoglycemic attack may go unnoticed in some patients in a hospice setting. Current trends in palliative care focus on providing treatments based on a prognosis-based framework, involving shared decision-making between the patient and caregivers, after considering the prognosis, professional recommendations, patient’s autonomy, family expectations, and the current methods for treating the patient’s physical symptoms and existential suffering. This paper provides professional care teams with both moral and literature support for providing care to nondiabetic patients presenting with hypoglycemia. PMID:27920549

  12. What determines duration of palliative care before death for patients with advanced disease? A retrospective cohort study of community and hospital palliative care provision in a large UK city

    PubMed Central

    Bennett, Michael I; Ziegler, Lucy; Allsop, Matthew; Daniel, Sunitha; Hurlow, Adam

    2016-01-01

    Objective For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6 months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors. Design This retrospective cohort study analysed referrals to three specialist palliative care services; a hospital-based inpatient palliative care team, and two community-based services (hospices). For each patient referred to any of the above services we identified the date of first referral to that team and calculated the median interval between first referral and death. We also calculated how referral time varied by age, sex, diagnosis and type of palliative care service. Participants 4650 patients referred to specialist palliative care services in Leeds UK between April 2012 and March 2014. Results Median age of the sample was 75 years. 3903 (84.0%) patients had a diagnosis of cancer. Age, diagnosis and place of referral were significant predictors of duration of palliative care before death. Age was independently associated (J=2 672 078, z=−392046.14, r=0.01) with duration of palliative care regardless of diagnosis. Patients over 75 years have 29 fewer days of palliative care than patients under 50. Patients with non-cancer diagnoses have 13 fewer days of palliative care than patients with cancer. Additionally, patients referred to hospital palliative care receive 24.5 fewer days palliative care than those referred to community palliative care services. Conclusions The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer

  13. Enhancing provider knowledge and patient screening for palliative care needs in chronic multimorbid patients receiving home-based primary care.

    PubMed

    Wharton, Tracy; Manu, Erika; Vitale, Caroline A

    2015-02-01

    This article describes a pilot model to increase palliative care (PC) knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential PC needs. Thirty health care providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. Palliative Performance Scale implementation added little burden on nurses and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent and resulted in targeted discussions about PC needs without generating additional burden on our PC consult service. This model shows promise for enhancing collaborative patient care and access to PC.

  14. Physician Reimbursement for Critical Care Services Integrating Palliative Care for Patients Who Are Critically Ill

    PubMed Central

    Nelson, Judith E.; Weissman, David E.; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Cortez, Therese B.; Curtis, J. Randall

    2012-01-01

    Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes. PMID:22396564

  15. Physician reimbursement for critical care services integrating palliative care for patients who are critically ill.

    PubMed

    Lustbader, Dana R; Nelson, Judith E; Weissman, David E; Hays, Ross M; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret L; Cortez, Therese B; Curtis, J Randall

    2012-03-01

    Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes.

  16. Development and psychometric evaluation of patient needs assessment in palliative care (PNAP) instrument.

    PubMed

    Buzgova, Radka; Kozakova, Radka; Sikorova, Lucie; Zelenikova, Renata; Jarosova, Darja

    2016-04-01

    Although assessment of palliative patients' needs is a key issue in palliative care, a suitable instrument for identification of such needs is not available in Central European countries. Our objectives were to produce an adequate tool for identifying the importance and satisfaction of palliative patients' needs and to verify its psychometric properties. The patient needs assessment in palliative care (PNAP) instrument was constructed based on a literature review and qualitative research (focus groups, n = 5). The psychometric properties of the questionnaire were verified by a cross-sectional study. The convergent validity of the questionnaire was determined by confirmatory factor analysis. Furthermore, internal consistency, test-retest reliability, and construct validity were also tested. The qualitative research group comprised 30 participants (27 experts in palliative care, 1 patient, and 2 family members). Psychometric properties were evaluated in a group of 349 hospital inpatients terminally ill with chronic disease or cancer and receiving palliative care. Based on the qualitative data analysis, a questionnaire was constructed that contained 42 items grouped into 5 domains. When testing the psychometric properties of the questionnaire, a new model containing 40 items in 7 domains was produced. Cronbach's α for the entire PNAP questionnaire was 0.89 on the importance scale and 0.80 on the satisfaction scale. Test-retest reliability was higher than 0.7 for all domains in both scales. The results of tests on the psychometric properties of the PNAP questionnaire showed at least satisfactory validity and reliability, and it can be employed to assess the needs of palliative care patients in Central European countries.

  17. Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting.

    PubMed

    Gramling, Robert; Stanek, Susan; Ladwig, Susan; Gajary-Coots, Elizabeth; Cimino, Jenica; Anderson, Wendy; Norton, Sally A; Aslakson, Rebecca A; Ast, Katherine; Elk, Ronit; Garner, Kimberly K; Gramling, Robert; Grudzen, Corita; Kamal, Arif H; Lamba, Sangeeta; LeBlanc, Thomas W; Rhodes, Ramona L; Roeland, Eric; Schulman-Green, Dena; Unroe, Kathleen T

    2016-02-01

    As endorsed by the palliative care "Measuring What Matters" initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care. To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment. As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: "Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?" (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from "past two days" to "today." One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete. The "Heard & Understood" item is a promising self-report quality measure for the inpatient palliative care setting. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  18. Supporting cancer patients with palliative care needs: district nurses' role perceptions.

    PubMed

    Griffiths, Jane; Ewing, Gail; Rogers, Margaret; Barclay, Stephen; Martin, Anna; McCabe, Janet; Todd, Chris

    2007-01-01

    The aim of this study was to examine UK district nurses' perceptions of their role in supporting palliative care cancer patients. Patients with cancer are living longer with the disease. District nurses are the largest UK workforce caring for people with cancer at home, the preferred place of care. Meeting patients' supportive and palliative care needs is complex. Little is known about district nurses' supportive role in the early phase of palliative care. Semistructured interviews were conducted with 34 district nurses. Data were analyzed thematically, with assistance from Atlas/ti. A dominant theme emerging from the interviews was ambiguity in the district nurses' supportive role in early palliative care. District nurses discussed the importance of making contact early on to support cancer patients and their families but had difficulty articulating this "support." Ambiguity, lack of confidence, and perceived skill deficits presented district nurses with dilemmas that were difficult to resolve. District nurses have great potential for meeting cancer patients' supportive and palliative care needs, a potential not currently realized. Education alone is unlikely to improve practice without an understanding of the tensions faced by district nurses in their work. Recognizing and addressing dilemmas in the everyday work of district nurses is central to moving practice forward.

  19. Swallowing problems at the end of the palliative phase: incidence and severity in 164 unsedated patients.

    PubMed

    Bogaardt, Hans; Veerbeek, Laetitia; Kelly, Katherine; van der Heide, Agnes; van Zuylen, Lia; Speyer, Renée

    2015-04-01

    Swallowing problems are reported to be a common finding in patients who receive palliative care. In existing literature, the incidence of swallowing problems is mostly described in small numbers of patients at the start of the palliative phase. As we hypothesized that the incidence of dysphagia might increase as the palliative phase progresses, this study describes the incidence of swallowing problems and related problems in 164 unsedated patients at the end of the palliative phase, defined by the last 72 h before their death. To determine the incidence of swallowing problems and related problems, questionnaires were completed bereaved by relatives and nursing staff. Our data shows that in the palliative phase the incidence of swallowing problems can be as high as 79 %. A significant correlation was found between swallowing problems and reduced psycho-social quality of life as assessed by nursing staff (ρ = -.284). Overall the nursing staff rated the incidence and severity of swallowing problems (and related problems like frequent coughing, loss of appetite, and problems with oral secretions) lower than the relatives. This study suggests that incidence of swallowing problems at the end of the palliative phase is high and that these difficulties may not only result in discomfort for patients, but also can raise concern for caregivers. More information and education on management of swallowing problems in palliative settings might be needed for both relatives and nursing staff. However, the data also suggest that any intervention should be proportional to the level of distress caused by the intervention.

  20. Arrhythmias Following Comprehensive Stage II Surgical Palliation in Single Ventricle Patients.

    PubMed

    Wilhelm, Carolyn M; Paulus, Diane; Cua, Clifford L; Kertesz, Naomi J; Cheatham, John P; Galantowicz, Mark; Fernandez, Richard P

    2016-03-01

    Post-operative arrhythmias are common in pediatric patients following cardiac surgery. Following hybrid palliation in single ventricle patients, a comprehensive stage II palliation is performed. The incidence of arrhythmias in patients following comprehensive stage II palliation is unknown. The purpose of this study is to determine the incidence of arrhythmias following comprehensive stage II palliation. A single-center retrospective chart review was performed on all single ventricle patients undergoing a comprehensive stage II palliation from January 2010 to May 2014. Pre-operative, operative, and post-operative data were collected. A clinically significant arrhythmia was defined as an arrhythmia which led to cardiopulmonary resuscitation or required treatment with either pacing or antiarrhythmic medication. Statistical analysis was performed with Wilcoxon rank-sum test and Fisher's exact test with p < 0.05 significant. Forty-eight single ventricle patients were reviewed (32 hypoplastic left heart syndrome, 16 other single ventricle variants). Age at surgery was 185 ± 56 days. Cardiopulmonary bypass time was 259 ± 45 min. Average vasoactive-inotropic score was 5.97 ± 7.58. Six patients (12.5 %) had clinically significant arrhythmias: four sinus bradycardia, one 2:1 atrioventricular block, and one slow junctional rhythm. No tachyarrhythmias were documented for this patient population. Presence of arrhythmia was associated with elevated lactate (p = 0.04) and cardiac arrest (p = 0.002). Following comprehensive stage II palliation, single ventricle patients are at low risk for development of tachyarrhythmias. The most frequent arrhythmia seen in these patients was sinus bradycardia associated with respiratory compromise.

  1. Research protocol on early palliative care in patients with acute leukaemia after one relapse.

    PubMed

    Barbaret, Cécile; Berthiller, Julien; Schott Pethelaz, Anne-Marie; Michallet, Mauricette; Salles, Gilles; Sanchez, Stéphane; Filbet, Marilène

    2017-07-31

    According to the American Society of Clinical Oncology palliative care referrals are made within the last 3 weeks of patients' lives and most frequently when oncological treatments have ceased especially for patients with haematological malignancies. Recent publications indicate that patients with acute leukaemia are prone to symptoms, an indication for which a close collaboration between the patient's haematologist and a palliative care team might result in improved symptom management. The object of this pilot study is to evaluate the feasibility of a clinical research trial to assess the effect of early palliative care in patients with acute leukaemia after one relapse. This project is a multicentre, non-blinded, randomised, controlled trial. Patients in group 1 will receive standard haematological care associated with palliative care (intervention group). Patients in group 2 will receive standard haematological care with palliative care only if requested by the haematologist (control group). In order to measure an accurate sample size, patients who participate will complete a standardised questionnaire to assess their quality of life, as well as their psychological and physical symptoms, before being randomised to one of two groups in a 1:1 ratio without stratified randomisation. The aim of this study is to analyse causes of dropout, non-adherence and missing data in order to refine the protocol for the subsequent clinical research trial. The ultimate objective of this project is to develop collaboration between haematologists and palliative care teams in order to improve patients' quality of life. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  2. [An Analysis of contributions to the main German chat forum for cancer patients regarding palliative care].

    PubMed

    Lamb, E-S; Liebl, P; Köster, M-J; Hübner, J

    2016-06-01

    Patients are looking for information regarding palliative care in different sources. Goal of this study is the analysis of the most important online forum for cancer patients, Cancer Compass, concerning palliative care. On the chosen date, 3.02.2012, all threads on the various topics (cancer types, cancer treatment, specific user groups, general topics, advice and addresses, countries and regions, Über den Krebs-Kompass & Vermischtes) were systematically analyzed. All entries relating to palliative care were recorded and subsequently analyzed and summarized. From 231 threads relating to palliative care, 163 were relevant.The general practitioner is the main source of information, but the internet is gaining importance. The forum users often offer good explanations of cancer and palliative care and also refer to web pages with exact definitions. Reliability of web pages is a one issue discussed in the forum.Patients are afraid of pain and dying. Relatives fear for the patient, are overwhelmed and experience existential problems. Both groups use the Cancer Compass to share experiences and get psychological support. Thus Cancer Compass offers a possibility to discuss options for improving quality of life.Especially in the initial phase of care, many users are uncertain what palliative care means. The treatment of pain represents the main concern of patients and their families. Whereas dedicated palliative care wards are rated positively, users speak less positively about pain treatment in general wards in home care.In general, inpatient palliative care was rated positively. However information regarding outpatient care is lacking. Family care is mostly not possible on account of geographical distance. One point of criticism is the discrepancy between urban and rural areas. Patients place more trust in their general practitioner than in hospital doctors. Cancer Compass is an important medium for patients and their families to share information, i. a. on palliative

  3. Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

    PubMed

    Busolo, David; Woodgate, Roberta

    2015-01-01

    The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and

  4. Delirium in adult patients receiving palliative care: a systematic review of the literature.

    PubMed

    Sánchez-Román, Sofía; Beltrán Zavala, Cristina; Lara Solares, Argelia; Chiquete, Erwin

    2014-01-01

    Delirium in palliative care patients is common and its diagnosis and treatment is a major challenge. Our objective was to perform a literature analysis in two phases on the recent scientific evidence (2007-2012) on the diagnosis and treatment of delirium in adults receiving palliative care. In phase 1 (descriptive studies and narrative reviews) 133 relevant articles were identified: 73 addressed the issue of delirium secondarily, and 60 articles as the main topic. However, only 4 prospective observational studies in which delirium was central were identified. Of 135 articles analysed in phase 2 (clinical trials or descriptive studies on treatment of delirium in palliative care patients), only 3 were about prevention or treatment: 2 retrospective studies and one clinical trial on multicomponent prevention in cancer patients. Much of the recent literature is related to reviews on studies conducted more than a decade ago and on patients different to those receiving palliative care. In conclusion, recent scientific evidence on delirium in palliative care is limited and suboptimal. Prospective studies are urgently needed that focus specifically on this highly vulnerable population. Copyright © 2013 SEP y SEPB. Published by Elsevier España. All rights reserved.

  5. The contribution of undergraduate palliative care education: does it influence the clinical patient's care?

    PubMed

    Centeno, Carlos; Rodríguez-Núñez, Alfredo

    2015-12-01

    The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.

  6. The acceptability of humor between palliative care patients and health care providers.

    PubMed

    Ridley, Julia; Dance, Derry; Pare, Daniel

    2014-04-01

    Humor frequently occurs in palliative care environments; however, the acceptability of humor, particularly between patients and health care providers has not been previously examined. To explore the importance and acceptability of humor to participants who are patients in a palliative care context, the study determines if demographics are correlated with the degree of acceptability, and examines the acceptance of humor by patients with advanced illness when interacting with nurses or physicians. One hundred participants admitted to a palliative care unit or residential hospice were surveyed. Basic demographic data were collected, as well as responses on a five-point Likert scale to a variety of questions regarding the participants' attitudes about humor before and after their illness and the acceptability of humor in a palliative setting. Participants were also given the opportunity to comment freely on the topic of humor and the palliative experience. A large majority of participants valued humor highly both prior to (77%) and during (76%) their illness experience. Despite this valuation, the frequency of laughter in their daily lives diminished significantly as patients' illness progressed. Most participants remembered laughing with a nurse (87%) and a doctor (67%) in the week prior to the survey, and found humor with their doctors (75%) and nurses appropriate (88%). The vast majority of participants found humorous interactions with their health care providers acceptable and appropriate, and this may indicate a opportunity for enhanced and more effective end-of-life care in the future.

  7. Traumatic brain injury and palliative care: a retrospective analysis of 49 patients receiving palliative care during 2013–2016 in Turkey

    PubMed Central

    Kahveci, Kadriye; Dinçer, Metin; Doger, Cihan; Yaricı, Ayse Karhan

    2017-01-01

    Traumatic brain injury (TBI), which is seen more in young adults, affects both patients and their families. The need for palliative care in TBI and the limits of the care requirement are not clear. The aim of this study was to investigate the length of stay in the palliative care center (PCC), Turkey, the status of patients at discharge, and the need for palliative care in patients with TBI. The medical records of 49 patients with TBI receiving palliative care in PCC during 2013–2016 were retrospectively collected, including age and gender of patients, the length of stay in PCC, the cause of TBI, diagnosis, Glasgow Coma Scale score, Glasgow Outcome Scale score, Karnofsky Performance Status score, mobilization status, nutrition route (oral, percutaneous endoscopic gastrostomy), pressure ulcers, and discharge status. These patients were aged 45.4 ± 20.2 years. The median length of stay in the PCC was 34.0 days. These included TBI patients had a Glasgow Coma Scale score ≤ 8, were not mobilized, received tracheostomy and percutaneous endoscopic gastrostomy nutrition, and had pressure ulcers. No difference was found between those who were discharged to their home or other places (rehabilitation centre, intensive care unit and death) in respect of mobilization, percutaneous endoscopic gastrostomy, tracheostomy and pressure ulcers. TBI patients who were followed up in PCC were determined to be relatively young patients (45.4 ± 20.2 years) with mobilization and nutrition problems and pressure ulcer formation. As TBI patients have complex health conditions that require palliative care from the time of admittance to intensive care unit, provision of palliative care services should be integrated with clinical applications. PMID:28250751

  8. Palliative transurethral prostate resection for bladder outlet obstruction in patients with locally advanced prostate cancer.

    PubMed

    Crain, Donald S; Amling, Christopher L; Kane, Christopher J

    2004-02-01

    The outcome of patients with advanced prostate cancer undergoing palliative transurethral resection of the prostate (TURP) is not well defined in the literature. We determined the preoperative characteristics, operative morbidity and postoperative outcomes of patients with advanced prostate cancer undergoing palliative TURP and compared these outcomes to those of patients undergoing TURP for benign prostatic hyperplasia (BPH). A retrospective review of all patients with prostate cancer undergoing palliative TURP at a single institution between 1994 and 2001 was performed. Operative reports, and outpatient and inpatient records were reviewed. Serum prostate specific antigen, and cancer grade and stage at cancer diagnosis were compared with findings at TURP. Operative statistics, postoperative outcomes and complication rates were compared between the palliative prostate cancer TURP group and a large cohort of 520 patients undergoing TURP at our institution for BPH during the same period. The Fisher exact and 1-sample t test were used to determine statistical differences in outcomes between these 2 groups. A total of 24 palliative TURPs were performed in 19 patients. At prostate cancer diagnosis mean patient age was 68.7 years (range 49 to 87) and median prostate specific antigen +/- SD was 39.7 +/- 78.3 ng/ml (range 1.5 to 334). Radiation therapy was the initial treatment in 11 patients (58%) and the remainder received initial hormonal therapy. Mean age at TURP was 74.2 years (range 50 to 91) with an average time from prostate cancer diagnosis to TURP of 49.7 months (range 1 to 196). While only 22.7% of the patients had high grade cancer (Gleason score 8 to 10) at cancer diagnosis 67% were determined to be high grade at palliative TURP (p = 0.001). After TURP the mean urinary flow rate decreased from 9.6 to 7.3 cc per second (p = 0.453) and the International Prostate Symptom Score improved from 21.1 to 11 (p = 0.002). Compared with patients undergoing TURP for BPH

  9. Concerns of patients undergoing palliative chemotherapy for end-stage carcinomatous peritonitis.

    PubMed

    Kakuta, Mayumi; Kakikawa, Fusako; Chida, Misao

    2015-12-01

    We sought to identify how nurses can help to alleviate the concerns of inpatients undergoing palliative chemotherapy when the treatment effects are weakening. Semistructured interviews were conducted with 8 inpatients receiving palliative chemotherapy for end-stage carcinomatous peritonitis at a university hospital. Qualitative inductive analysis of the interview data revealed 7 categories of patient concerns. Overall, patients faced many dilemmas and expressed concerns about wanting to continue chemotherapy while also thinking about discontinuing it. However, they also expressed hope, the strength of which was influenced and changed in complex ways by each treatment outcome and the severity of their physical symptoms. From these results, we suggest specific aspects of nursing care for patients with end-stage cancer who are receiving palliative chemotherapy that is becoming less effective. © The Author(s) 2014.

  10. Dying in Palliative Care Units and in Hospital: A Comparison of the Quality of Life of Terminal Cancer Patients.

    ERIC Educational Resources Information Center

    Viney, Linda L.; And Others

    1994-01-01

    Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…

  11. [Palliative care in pediatrics, ethics and relations with the patient].

    PubMed

    Friedel, Marie

    2014-01-01

    The extension of the Belgian law on euthanasia to minors during the course of 2014 raises questions with regard to the needs of children in the context of paediatric palliative care. These needs concern essentially the focus given to the interrelations between the child, their family and the caregiving team as well as to the relief of the physical, psychological and spiritual pain. Ethical guidelines help to fuel the discussions surrounding professional practices.

  12. An evaluation of a domiciliary blood transfusion service for palliative care patients in Northern Ireland.

    PubMed

    Devlin, Breige; Agnew, Audrey

    2008-07-01

    Marie Curie Cancer Care is a national charitable organisation that provides specialist palliative care services to patients with cancer and other life-limiting illnesses. Marie Curie Nursing Service (MCNS) provides nursing services to patients in their own homes. The administration of blood transfusions to palliative care patients is required to improve symptom management and quality of life; however, this procedure often results in unnecessary hospital admissions. Recognising that the majority of patients wish to be cared for and die in their own home, and with national guidance recommending that specialist palliative care services should be provided to patients in their preferred place of care, a recent service initiative by MCNS was domiciliary blood transfusions. While this is not a new service within domiciliary care, this pilot project aimed to capture patient views to evaluate this service initiative. Telephone interviews were conducted, using a questionnaire, with 11 patients who had received the service. Findings indicated positive evaluation of the service. Domiciliary blood transfusions helped to avoid unnecessary hospital admissions, the quality of life of patients and their families was improved in the palliative phase of illness and they received the service in their preferred place of care.

  13. Acting as Standardized Patients Enhances Family Medicine Residents' Self-Reported Skills in Palliative Care

    ERIC Educational Resources Information Center

    Sittikariyakul, Pat; Jaturapatporn, Darin; Kirshen, A. J.

    2015-01-01

    Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory…

  14. Acting as Standardized Patients Enhances Family Medicine Residents' Self-Reported Skills in Palliative Care

    ERIC Educational Resources Information Center

    Sittikariyakul, Pat; Jaturapatporn, Darin; Kirshen, A. J.

    2015-01-01

    Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory…

  15. Palliative care consultation versus palliative care unit: which is associated with shorter terminal hospitalization length of stay among patients with cancer?

    PubMed

    Alsirafy, Samy A; Abou-Alia, Ahmad M; Ghanem, Hafez M

    2015-05-01

    Hospital length of stay (LoS) may be used to assess end-of-life care aggressiveness and health care delivery efficiency. We describe the terminal hospitalization LoS of patients with cancer managed by a hospital-based palliative care (PC) program comprising a palliative care consultation (PCC) service and an inpatient palliative care unit (PCU). A total of 328 in-hospital cancer deaths were divided into 2 groups. The PCU group included patients admitted by the PC team directly to the PCU. The PCC group included patients admitted by other specialties and referred to the PCC team. The LoS of the PCU group was significantly shorter than that of the PCC group (9.9 [±9.4] vs 17.8 [±19.7] days, respectively; P < .001). Direct terminal hospitalization to PCU is not associated with longer LoS among cancer deaths managed by a hospital-based PC service.

  16. The Effect of Horticultural Therapy on the Quality of Life of Palliative Care Patients.

    PubMed

    Lai, Claudia Kam-Yuk; Lau, Carmen Ka-Yan; Kan, Wai Yin; Lam, Wai Man; Fung, Connie Yuen Yee

    2017-01-27

    Palliative care patients experienced a variety of needs and perceived their quality of life as being only fair. This study adopted a single group repeated-measure design to investigate the effect of horticultural therapy on the quality of life of palliative care patients using the Quality of Life Concern in End of Life Questionnaire. Significant differences in the domains of "existential distress" and "health care concern" were observed immediately post-intervention and at four weeks post-intervention, respectively. No other significant differences were seen in the other domains or in the total mean score of the outcome measure.

  17. Patients in palliative care-Development of a predictive model for anxiety using routine data.

    PubMed

    Hofmann, Sonja; Hess, Stephanie; Klein, Carsten; Lindena, Gabriele; Radbruch, Lukas; Ostgathe, Christoph

    2017-01-01

    Anxiety is one of the most common psychological symptoms in patients in a palliative care situation. This study aims to develop a predictive model for anxiety using data from the standard documentation routine. Data sets of palliative care patients collected by the German quality management benchmarking system called Hospice and Palliative Care Evaluation (HOPE) from 2007 to 2011 were randomly divided into a training set containing two-thirds of the data and a test set with the remaining one-third. We dichotomized anxiety levels, proxy rated by medical staff using the validated HOPE Symptom and Problem Checklist, into two groups with no or mild anxiety versus moderate or severe anxiety. Using the training set, a multivariable logistic regression model was developed by backward stepwise selection. Predictive accuracy was evaluated by the area under the receiver operating characteristic curve (AUC) based on the test set. An analysis of 9924 data sets suggests a predictive model for anxiety in patients receiving palliative care which contains gender, age, ECOG, living situation, pain, nausea, dyspnea, loss of appetite, tiredness, need for assistance with activities of daily living, problems with organization of care, medication with sedatives/anxiolytics, antidepressants, antihypertensive drugs, laxatives, and antibiotics. It results in a fair predictive value (AUC = 0.72). Routinely collected data providing individual-, disease- and therapy-related information contain valuable information that is useful for the prediction of anxiety risks in patients receiving palliative care. These findings could thus be advantageous for providing appropriate support for patients in palliative care settings and should receive special attention in future research.

  18. Relatives' perceived quality of palliative care: comparisons between care settings in which patients die.

    PubMed

    de Boer, Dolf; Hofstede, Jolien M; de Veer, Anke J E; Raijmakers, Natasja J H; Francke, Anneke L

    2017-08-16

    Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care. The dataset includes 1368 relatives of patients with a wide variety of conditions who died in various locations: at home, in hospital, in residential care for the elderly, a hospice, palliative care unit or in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The relatives were the first contacts (family members or other people close to the patient) and they received the survey between 6 weeks and 6 months after the bereavement. Based on the raw data, differences between locations in terms of the perceived quality of care initially appeared inconsistent. The multivariate regression analyses however showed that relatives of people who died at home were generally the most positive about the palliative care that the patient and they themselves received when the patient was dying. The care provided by hospices also received a relatively good rating. In hospitals and in residential settings for care of the elderly, the care was rated less highly by the relatives. The quality of palliative care as experienced from the relatives' perspective is highest when the patient dies at home or in a hospice. This is an argument for letting people die at home, if they so wish, as far as possible and feasible.

  19. Communication About Sexuality in Advanced Illness Aligns With a Palliative Care Approach to Patient-Centered Care.

    PubMed

    Leung, Margaret W; Goldfarb, Shari; Dizon, Don S

    2016-02-01

    Treatment-related sexual complications are common in cancer patients although rarely discussed in the palliative care setting. Sexuality is an important survivorship issue and remains relevant even in the terminal setting. There are multiple barriers in dialoguing about intimacy and sexual functioning from the patient and provider perspectives. Palliative care providers, while not expected to be sexual health experts, can provide comprehensive patient-centered care by including sexual health as part of their evaluation. They can explore how sexual dysfunction can impair functioning and utilize an interdisciplinary approach to manage symptoms. Palliative care providers can help patients identify their goals of care and explore what anticipated sexual changes and treat-related side effects are tolerable and intolerable to the patient's quality of life. Principles on addressing sexuality in the palliative setting and practical ways of incorporating sexual history into the palliative care assessment are provided.

  20. Palliative care in the inner city. Patient religious affiliation, underinsurance, and symptom attitude.

    PubMed

    Francoeur, Richard B; Payne, Richard; Raveis, Victoria H; Shim, Hyunjung

    2007-01-15

    Many barriers, including being uninsured or having less than comprehensive health insurance coverage, reduce access to palliative and end-of-life care by inner city minorities. Medicaid or Medicare coverage alone can limit options for pain and symptom management, especially when late referrals make it more difficult to achieve symptom control. Patient affiliation with a religion could offset perceived difficulties with pain medication as well as negative pain and symptom attitudes. Data were analyzed from the most recent assessments of 146 African Americans and Latinos enrolled in an outpatient palliative care unit of an inner city hospital. Fifty-seven percent were receiving palliative care for cancer. Compared with other patients, patients with a religious affiliation did not differ regarding pain medication stress. Uninsured patients with a religious affiliation reported more hopeful pain and symptom attitudes, while patients with a religious affiliation covered only by Medicaid reported less hopeful pain and symptom attitudes. More hopeful pain and symptom attitudes by religious-affiliated, uninsured patients may reveal adequate coping, yet also conceal problem domains. Conversely, less hopeful attitudes by religious-affiliated patients covered only by Medicaid serve as clues to coping difficulties and problem domains. Palliative care programs should carefully consider how to integrate religious support networks as pipelines for program referrals and potential partners for care. Cancer 2007. (c) 2006 American Cancer Society.

  1. A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol

    PubMed Central

    2013-01-01

    Background Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report palliative needs in a screening, will benefit from being referred to ‘early SPC’. Methods/Design DanPaCT is a clinical, multicentre, parallel-group superiority trial with balanced randomisation (1:1). The planned sample size is 300 patients. Patients are randomised to specialised palliative care (SPC) plus standard treatment versus standard treatment. Consecutive patients from oncology departments are screened for palliative needs with a questionnaire if they: a) have metastatic cancer; b) are 18 years or above; and c) have no prior contact with SPC. Patients with palliative needs (i.e. symptoms/problems exceeding a certain threshold) according to the questionnaire are eligible. The primary outcome is the change in the patients’ primary need (the most severe symptom/problem measured with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Secondary outcomes are other symptoms/problems (EORTC QLQ-C30), satisfaction with health care (FAMCARE P-16), anxiety and depression (the Hospital Anxiety and Depression scale), survival, and health care costs. Discussion Only few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based ‘early SPC’ for patients with a broad spectrum of cancer diagnosis. Trial registration Current controlled Trials NCT01348048 PMID:24152880

  2. Palliative Care and Health Care Utilization for Patients With End-Stage Liver Disease at the End of Life.

    PubMed

    Patel, Arpan A; Walling, Anne M; Ricks-Oddie, Joni; May, Folasade P; Saab, Sammy; Wenger, Neil

    2017-10-01

    There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this

  3. Implementing patient reported outcome measures (PROMs) in palliative care - users' cry for help

    PubMed Central

    2011-01-01

    Background Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures. Methods A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire. Results Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs. Conclusions Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care. PMID:21507232

  4. A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS).

    PubMed

    Rudilla, David; Oliver, Amparo; Galiana, Laura; Barreto, Pilar

    2016-04-01

    This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity. Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support. After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale. The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

  5. Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

    PubMed

    Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R

    2017-10-01

    Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

  6. Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

    PubMed

    Prizer, Lindsay P; Gay, Jennifer L; Perkins, Molly M; Wilson, Mark G; Emerson, Kerstin G; Glass, Anne P; Miyasaki, Janis M

    2017-10-01

    A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. A cross-sectional survey study of neurologists. A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

  7. A systematic review of specialised palliative care for terminal patients: which model is better?

    PubMed

    García-Pérez, L; Linertová, R; Martín-Olivera, R; Serrano-Aguilar, P; Benítez-Rosario, M A

    2009-01-01

    There is evidence of improved effectiveness of specialised palliative care for terminally ill patients in comparison to conventional care. However, there is uncertainty about which model is better. The objective of this systematic review was to identify studies that compare specialised palliative care models between them assessing their effectiveness or cost-effectiveness. We searched studies published between 2003 and 2006 in several electronic databases and updated the search in MEDLINE up to 2008. Papers published before 2003 were identified by means of previous systematic reviews and manual search. Studies with broad designs comparing two or more specialised palliative care programmes in adults with terminal illness were selected. Six systematic reviews, three studies on effectiveness and one cost study were included. All systematic reviews drew the conclusion that specialised palliative care is more effective than conventional care. The methodological limitations of the original studies and the heterogeneity of programmes did not allow to draw conclusions about whether a specific model of specialised palliative care is more or less effective or cost-effective than other.

  8. Place and time of death in patients treated with palliative intent for oral cancer.

    PubMed

    Kamisetty, A; Mayland, C R; Jack, B; Lowe, D; Rogers, S N

    2014-05-01

    Information about place and time of death can help patients, carers, general medical practitioners, and multi-professional teams to put palliation for oral cancer into context, particularly the aspirations of patients about where they die. Aintree Regional Maxillofacial Unit treated 487 consecutive patients for primary oral squamous cell carcinoma between 2006 and 2010. Mortality was ascertained from the Office for National Statistics. A total of 65 (13%) patients were treated with palliative intent, and median (IQR) survival was 4.3 months (2.1-8.0). The most common reasons for palliation were inoperability (33%) and extensive disease associated with serious comorbidity (18%). A total of 22 died in hospital, 14 in a hospice, 14 in their own home, 14 in a nursing, residential, or old people's home, and one elsewhere. Most patients given palliative care do not die in hospital and survival is short. Their needs and those of their carers can be better met through integrated care that is linked to the primary sector.

  9. [Palliative care for HIV/AIDS patients: bioethical principles adopted by nurses].

    PubMed

    de Vasconcelos, Monica Ferreira; da Costa, Solange Fátima Geraldo; Lopes, Maria Emília Limeira; Abrão, Fátima Maria da Silva; Batista, Patricia Serpa de Souza; Oliveira, Regina Celia

    2013-09-01

    This study sought to investigate the principles of bioethics considered by nurses involved in research while caring for patients with HIV/Aids under palliative care. An exploratory study, with a qualitative approach, was conducted with twelve nurses in a public hospital in the municipality of João Pessoa in the State of Paraíba. A form was used for data collection and the empirical material was analyzed qualitatively using the content analysis technique. The following categories emerged from the qualitative analysis: Respect for the autonomy of HIV/Aids patients under palliative care; and Enhancement of the principles of charity, non-malevolence and justice in providing palliative care to HIV/Aids patients. The results revealed that the participants acknowledge the importance of bioethical principles while caring for patients with HIV/Aids under palliative care. The work provides a reflection on and elicits the pursuance of further studies which can contribute to improve the quality of life of these patients with care based on ethical principles.

  10. An integrated approach to patient-specific predictive modeling for single ventricle heart palliation.

    PubMed

    Corsini, Chiara; Baker, Catriona; Kung, Ethan; Schievano, Silvia; Arbia, Gregory; Baretta, Alessia; Biglino, Giovanni; Migliavacca, Francesco; Dubini, Gabriele; Pennati, Giancarlo; Marsden, Alison; Vignon-Clementel, Irene; Taylor, Andrew; Hsia, Tain-Yen; Dorfman, Adam

    2014-01-01

    In patients with congenital heart disease and a single ventricle (SV), ventricular support of the circulation is inadequate, and staged palliative surgery (usually 3 stages) is needed for treatment. In the various palliative surgical stages individual differences in the circulation are important and patient-specific surgical planning is ideal. In this study, an integrated approach between clinicians and engineers has been developed, based on patient-specific multi-scale models, and is here applied to predict stage 2 surgical outcomes. This approach involves four distinct steps: (1) collection of pre-operative clinical data from a patient presenting for SV palliation, (2) construction of the pre-operative model, (3) creation of feasible virtual surgical options which couple a three-dimensional model of the surgical anatomy with a lumped parameter model (LPM) of the remainder of the circulation and (4) performance of post-operative simulations to aid clinical decision making. The pre-operative model is described, agreeing well with clinical flow tracings and mean pressures. Two surgical options (bi-directional Glenn and hemi-Fontan operations) are virtually performed and coupled to the pre-operative LPM, with the hemodynamics of both options reported. Results are validated against postoperative clinical data. Ultimately, this work represents the first patient-specific predictive modeling of stage 2 palliation using virtual surgery and closed-loop multi-scale modeling.

  11. An integrated approach to patient-specific predictive modeling for single ventricle heart palliation

    PubMed Central

    Corsini, Chiara; Baker, Catriona; Kung, Ethan; Schievano, Silvia; Arbia, Gregory; Baretta, Alessia; Biglino, Giovanni; Migliavacca, Francesco; Dubini, Gabriele; Pennati, Giancarlo; Marsden, Alison; Vignon-Clementel, Irene; Taylor, Andrew; Hsia, Tain-Yen; Dorfman, Adam

    2014-01-01

    In patients with congenital heart disease and a single ventricle (SV), ventricular support of the circulation is inadequate, and staged palliative surgery (usually 3 stages) is needed for treatment. In the various palliative surgical stages individual differences in the circulation are important and patient-specific surgical planning is ideal. In this study, an integrated approach between clinicians and engineers has been developed, based on patient-specific multi-scale models, and is here applied to predict stage 2 surgical outcomes. This approach involves four distinct steps: (1) collection of pre-operative clinical data from a patient presenting for SV palliation, (2) construction of the pre-operative model, (3) creation of feasible virtual surgical options which couple a three-dimensional model of the surgical anatomy with a lumped parameter model (LPM) of the remainder of the circulation and (4) performance of post-operative simulations to aid clinical decision making. The pre-operative model is described, agreeing well with clinical flow tracings and mean pressures. Two surgical options (bi-directional Glenn and hemi-Fontan operations) are virtually performed and coupled to the pre-operative LPM, with the hemodynamics of both options reported. Results are validated against postoperative clinical data. Ultimately, this work represents the first patient-specific predictive modeling of stage 2 palliation using virtual surgery and closed-loop multi-scale modeling. PMID:23343002

  12. The physician as patient in palliative care: A retrospective case-note audit.

    PubMed

    McMichael, Lachlan C; Zambrano, Sofia C; Crawford, Gregory B

    2016-10-01

    Dying physicians may present unique challenges to palliative care teams. Studies of dying physicians are scarce, but those that exist suggest a potential absence of a coordinating clinician, prolongation of curative treatments, resistance to palliative care input and barriers to discussing psychosocial needs. The aim was to describe and examine the care provided to physician-patients referred to an Australian palliative care service, and to identify issues faced by the physician-patient and by the treating team. A retrospective case-note audit of the case notes of medical practitioners referred for palliative care and dying between January 2007 and April 2013 was conducted. There was evidence of medically qualified friends or family members initiating referrals and directing treatment decisions. There was some evidence of increased consultant-led decision-making and bypassing of usual referral pathways and systems for providing after-hours advice and calling consultants directly. There also appeared to be some reluctance by junior doctors to make decisions, because of the patient's desire for consultant-level advice only. This study adds to the growing body of literature that identifies the potential difficulties associated with caring for medical practitioners. By understanding some of the complexity of this particular doctor-patient relationship, clinicians can approach the management of physician-patients facing the end of their lives with a more sound understanding of their particular care needs. © The Author(s) 2016.

  13. [Palliative care in patients without cancer: Impact of the end-of-life care team].

    PubMed

    Nishikawa, Mitsunori; Yokoe, Yuriko; Kubokawa, Naomi; Hukuda, Koji; Hattori, Hideyuki; Hong, Young-Jae; Miura, Hisayuki; Shibasaki, Masataka; Endo, Hidetoshi; Takeda, Jun; Odate, Mitsuru; Senda, Kazuyoshi; Nakashima, Kazumitsu

    2013-01-01

    Palliative care improves the quality of life of patients and their families facing problems associated with life-threatening illnesses by promoting the prevention and relief of suffering. Palliative care in Japan has been developed mainly for cancer patients. At the National Center for Geriatrics and Gerontology, an end-of-life care team (EOLCT) has been developed to promote palliative care for patients without cancer. In the first 6 months of its operation, 109 requests were received by the team, 40% of which were for patients without cancer or related disease, including dementia, frailty due to advanced age, chronic respiratory failure, chronic heart failure, and intractable neurologic diseases. The main purpose of the EOLCT is to alleviate suffering. The relevant activities of the team include the use of opioids, providing family care, and giving support in decision-making (advance care planning) regarding withholding; enforcement; and withdrawal of mechanical ventilators, gastric feeding tubes, and artificial alimentation. The EOLCT is also involved in ongoing discussions of ethical problems. The team is actively engaged in the activities of the Japanese Geriatric Society and contributes to the development of decision-making guidelines for end-of-life by the Ministry of Health, Labour and Welfare. The EOLCT can be helpful in promoting palliative care for patients with diseases other than cancer. The team offers support during times of difficulty and decision-making.

  14. Understanding palliative nursing care.

    PubMed

    Geoghan, Darlene A

    2008-01-01

    Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life-altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non-pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones.

  15. Integrating Palliative Care Into the Care of Neurocritically Ill Patients: A Report From the Improving Palliative Care in the ICU Project Advisory Board and the Center to Advance Palliative Care.

    PubMed

    Frontera, Jennifer A; Curtis, J Randall; Nelson, Judith E; Campbell, Margaret; Gabriel, Michelle; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Bassett, Rick; Boss, Renee D; Lustbader, Dana R; Brasel, Karen J; Weiss, Stefanie P; Weissman, David E

    2015-09-01

    To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. A search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term "palliative care," "supportive care," "end-of-life care," "withdrawal of life-sustaining therapy," "limitation of life support," "prognosis," or "goals of care" together with "neurocritical care," "neurointensive care," "neurological," "stroke," "subarachnoid hemorrhage," "intracerebral hemorrhage," or "brain injury." We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and

  16. The incidence of neuropathic pain in bone metastases patients referred for palliative radiotherapy.

    PubMed

    Lechner, Breanne; Chow, Selina; Chow, Ronald; Zhang, Liying; Tsao, May; Danjoux, Cyril; Barnes, Elizabeth; DeAngelis, Carlo; Vuong, Sherlyn; Ganesh, Vithusha; Chow, Edward

    2016-03-01

    To estimate the prevalence of neuropathic pain in patients with symptomatic bone metastases referred for palliative radiotherapy. A prospective study of patients with symptomatic bone metastases was conducted. Patients referred for palliative radiotherapy completed the Self-Reported Leeds Assessment of Neuropathic Symptoms and Signs (S-LANSS) questionnaire to assess for neuropathic pain. Patient demographics, medication use, and radiotherapy prescribed were collected. Statistical approaches to identify relationships between the presence of neuropathic and other patient factors were conducted. 62 patients completed the S-LANSS and 16 (25.8%) patients had a score suggesting neuropathic pain. Fifty-nine (95.2%) patients received radiotherapy with total of 81 sites treated, the most common sites were spine and pelvis. No statistically significant difference in fractionation was found between patients with and without neuropathic pain. Of the 16 patients with neuropathic pain, only 2 were receiving a neuropathic specific analgesic. No significant difference between demographic factors or radiation treatments between patients with and without neuropathic pain was found. There was no significant difference in worst pain score between these two groups. Pain with neuropathic features remains prevalent in a population of patients referred for palliative radiotherapy. More frequent prescription of pain medications targeting neuropathic pain may be warranted in this patient population. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  17. Patients' sense of security during palliative care-what are the influencing factors?

    PubMed

    Milberg, Anna; Friedrichsen, Maria; Jakobsson, Maria; Nilsson, Eva-Carin; Niskala, Birgitta; Olsson, Maria; Wåhlberg, Rakel; Krevers, Barbro

    2014-07-01

    Having a sense of security is vitally important to patients who have a limited life expectancy. We sought to identify the factors associated with patients' sense of security during the palliative care period. We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link). Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model. These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  18. [Emergency care for patients in palliative situations--algorithm for decision-making and recommendations for treatment].

    PubMed

    Makowski, Corinna; Marung, Hartwig; Callies, Andreas; Knacke, Peter; Kerner, Thoralf

    2013-03-01

    Emergency care for patients in palliative situations is not a rare event, but often difficult to handle, because training in palliative care for emergency physicians is often insufficient. This article proposes an algorithm that should facilitate the decision-making process in such emergencies. In addition, recommendations concerning the management of symptoms in the emergency medical services are presented.

  19. Palliative Care for a Mentally Incompetent End Stage Renal Failure Patient: Why Is It Important?

    PubMed Central

    Chan, Kwok-Ying; Yip, Terence; Sham, Mau-Kwong; Cheng, Benjamin Hon-Wai; Li, Cho-Wing; Wong, Yim-Chi; Lau, Vikki Wai-Kee

    2015-01-01

    People with intellectual disabilities are among the most disadvantaged groups in society. Here we report a mentally incompetent end stage renal failure (ESRF) patient with frequent emergency visits who made a significant improvement in symptoms control and reduction in casualty visits after introduction of renal palliative care service. Multidisciplinary approach would be useful in this case. PMID:25838954

  20. [The perception by nurses of the significance of palliative care in patients with terminal cancer].

    PubMed

    Fernandes, Maria Andréa; Evangelista, Carla Braz; Platel, Indiara Carvalho dos Santos; Agra, Glenda; Lopes, Marineide de Souza; Rodrigues, Francileide de Araújo

    2013-09-01

    This study sought to assess the perception of nurses with respect to cancer patients under palliative care. It is an exploratory study with a qualitative approach conducted with nurses from a hospital attending cancer patients under palliative care located in the city of João Pessoa, State of Paraíba. The study included nine nurses who worked in the hospital. The empirical material was collected using the technique of semi-structured interviews and analyzed using the content analysis technique. The interpretative analysis of the interviews led to the definition of three categories: Improving the quality of life through the alleviation of pain and suffering; Palliative Care: a multi-professional study of terminal patients and their families in the grieving process; Communication: a source of dignity in the terminal care process. The conclusion reached is that the study revealed that the nurses involved acknowledge the importance of the multidisciplinary team. It enables the nurses to reflect on the use of communication as an essential element of care for patient and family under palliative care. It is hoped that the data obtained may foster further research on the topic.

  1. Outcomes of Music Therapy Interventions on Symptom Management in Palliative Medicine Patients.

    PubMed

    Gallagher, Lisa M; Lagman, Ruth; Rybicki, Lisa

    2017-01-01

    Evidence has demonstrated the positive effects of music therapy on symptom management for palliative medicine patients. Previous studies have addressed patient needs, with limited discussion involving the relationship between interventions utilized to improve symptoms. The purpose of this study was to understand the impact of music therapy sessions; identify common music therapy goals and interventions and assess their effect; and investigate the effects of gender, age, and type of cancer on symptoms in patients who experienced music therapy. This was a retrospective study of data collected during music therapy sessions. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after sessions. Data collected from over 1500 patients included symptom evaluation, goals, interventions, music used, patient/family reactions, and narratives. Among 293 patients who met all study inclusion criteria, significant improvement in pain, anxiety, depression, shortness of breath, mood, facial expression, and vocalization scores was noted. In addition, 96% of patients had positive responses to participating in music therapy. Vocal and emotional were the 2 most effective interventions in improving symptoms. All 5 patient-reported symptoms improved when the therapist focused on these symptoms as goals. Age, gender, and diagnosis had no impact on symptom improvement. This study demonstrated the importance of music therapy for addressing symptoms and behaviors of palliative medicine patients. Statistically and clinically significant effects were noted. The most effective interventions were identified. More research needs to be conducted to better understand the benefits of music therapy for palliative medicine patients.

  2. The Value of Palliative Gastrectomy for Gastric Cancer Patients With Intraoperatively Proven Peritoneal Seeding

    PubMed Central

    Yang, Kun; Liu, Kai; Zhang, Wei-Han; Lu, Zheng-Hao; Chen, Xin-Zu; Chen, Xiao-Long; Zhou, Zong-Guang; Hu, Jian-Kun

    2015-01-01

    Abstract The aim of this study was to evaluate the survival benefit of palliative gastrectomy for gastric cancer patients with peritoneal seeding proven intraoperatively and to identify positive predictive factors for improving survival. The value of palliative resection for gastric cancer patients with peritoneal metastasis is controversial. From 2006 to 2013, 267 gastric cancer patients with intraoperatively identified peritoneal dissemination were retrospectively analyzed. Patients were divided into resection group and nonresection group according to whether a palliative gastrectomy was performed. Clinicopathologic variables and survival were compared. Subgroup analyses stratified by clinicopathologic factors and multivariable analysis for overall survival were also performed. There were 114 patients in the resection group and 153 in nonresection group. The morbidities in the resection and nonresection groups were 14.91% and 5.88%, respectively (P = 0.014). There, however, was no difference in mortality between the 2 groups. The median survival time of patients in the resection group was longer than in nonresection group (14.00 versus 8.57 months, P = 0.000). The median survivals among the patients with different classifications of peritoneal metastasis were statistically significant (P = 0.000). Patients undergoing resection followed by chemotherapy had a significantly longer median survival, compared with that of patients who had chemotherapy alone, those who had resection alone, or those who had not received chemotherapy or resection (P = 0.000). Results of subgroup analyses showed that except for P3 patients and patients with multisite distant metastases, overall survival was significantly better in patients with palliative gastrectomy, compared with the nonresection group. In multivariate analysis, P3 disease (P = 0.000), absence of resection (P = 0.000), and lack of chemotherapy (P = 0.000) were identified as independently

  3. The determinants of patients in a palliative care unit being discharged home in Japan.

    PubMed

    Amano, Koji; Nishiuchi, Yasuno; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Wakayama, Hiroshi; Watakabe, Akiko; Kunimoto, Hiromi; Morita, Tatsuya

    2014-05-01

    In Japan, regarding the place of end-of-life care, many people preferred the home. However, there is a discrepancy between patients' wishes and the actual circumstances. The primary aim of this study was to explore the factors that determine discharge home of patients in a palliative care unit. A total of 31 patients met the criteria. The patients who could be discharged home (group 1; n = 23) were compared with the others (group 2; n = 8). Palliative prognostic index was significantly lower in group 1 than in group 2 (P = .032). Regarding routes of feeding, oral intake was significantly higher in group 1 than in group 2 (P = .043). That is to say, factors determining discharge home of patients may be influenced by the patient's prognosis and the necessity of a feeding device.

  4. Perceptions of two therapeutic approaches for palliative care patients experiencing death anxiety.

    PubMed

    Sussman, Joleen Carol; Liu, William Ming

    2014-08-01

    Evidenced-based psychotherapies are not well researched for palliative care patients experiencing unrelenting anxiety about dying, even less research is focused on young adult palliative care patients with death anxiety. The aim of this study is to provide preliminary data regarding potential clients' perceptions of using evidenced based treatments with dying populations who are experiencing death anxiety. 104 college students were used as potential clients and randomly assigned to watch either a short video of a cognitive therapy (CT) session or of an acceptance and commitment therapy (ACT) session focused on treating a young adult diagnosed with an acute lymphoid leukemia expressing death anxiety. After watching the video, potential clients rated the session impact of the therapy approach using the Session Evaluation Questionnaire. No differences in ratings of session impact were found between potential clients who viewed the CT session and the ACT session. In regards to potential clients' views of session impact variables, their view of session smoothness was positively related to their post-session positivity, but inversely related to their view of session depth. Additionally, a positive correlation was found between potential clients' views of the therapist and session depth. This preliminary study suggests that palliative care patients expressing death anxiety may benefit from either ACT or CT for death anxiety, however, future research is needed to explore the usefulness of each approach. Findings of this study support the theory that ACT and CT are viewed to have a similar session impact in the palliative care population.

  5. Spiritual Concerns in Hindu Cancer Patients Undergoing Palliative Care: A Qualitative Study

    PubMed Central

    Simha, Srinagesh; Noble, Simon; Chaturvedi, Santosh K

    2013-01-01

    Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care. PMID:24049350

  6. Palliative Care Physicians' Attitudes Toward Patient Autonomy and a Good Death in East Asian Countries.

    PubMed

    Morita, Tatsuya; Oyama, Yasuhiro; Cheng, Shao-Yi; Suh, Sang-Yeon; Koh, Su Jin; Kim, Hyun Sook; Chiu, Tai-Yuan; Hwang, Shinn-Jang; Shirado, Akemi; Tsuneto, Satoru

    2015-08-01

    Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed. A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country

  7. Limitation to Advanced Life Support in patients admitted to intensive care unit with integrated palliative care

    PubMed Central

    Mazutti, Sandra Regina Gonzaga; Nascimento, Andréia de Fátima; Fumis, Renata Rego Lins

    2016-01-01

    Objective To estimate the incidence of limitations to Advanced Life Support in critically ill patients admitted to an intensive care unit with integrated palliative care. Methods This retrospective cohort study included patients in the palliative care program of the intensive care unit of Hospital Paulistano over 18 years of age from May 1, 2011, to January 31, 2014. The limitations to Advanced Life Support that were analyzed included do-not-resuscitate orders, mechanical ventilation, dialysis and vasoactive drugs. Central tendency measures were calculated for quantitative variables. The chi-squared test was used to compare the characteristics of patients with or without limits to Advanced Life Support, and the Wilcoxon test was used to compare length of stay after Advanced Life Support. Confidence intervals reflecting p ≤ 0.05 were considered for statistical significance. Results A total of 3,487 patients were admitted to the intensive care unit, of whom 342 were included in the palliative care program. It was observed that after entering the palliative care program, it took a median of 2 (1 - 4) days for death to occur in the intensive care unit and 4 (2 - 11) days for hospital death to occur. Many of the limitations to Advanced Life Support (42.7%) took place on the first day of hospitalization. Cardiopulmonary resuscitation (96.8%) and ventilatory support (73.6%) were the most adopted limitations. Conclusion The contribution of palliative care integrated into the intensive care unit was important for the practice of orthothanasia, i.e., the non-extension of the life of a critically ill patient by artificial means. PMID:27626949

  8. Timely identification of palliative patients and anticipatory care planning by GPs: practical application of tools and a training programme.

    PubMed

    Thoonsen, Bregje; Groot, Marieke; Verhagen, Stans; van Weel, Chris; Vissers, Kris; Engels, Yvonne

    2016-04-05

    Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them.

  9. Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology.

    PubMed

    Levine, Deena R; Mandrell, Belinda N; Sykes, April; Pritchard, Michele; Gibson, Deborah; Symons, Heather J; Wendler, David; Baker, Justin N

    2017-09-01

    Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those

  10. Palliative care for patients with malignancy and end-stage renal failure on peritoneal dialysis.

    PubMed

    Jing, Lv; Wu-Jun, Xue; Feng, Tan

    2014-05-01

    Many patients on peritoneal dialysis experience a poor quality of life because of a high burden of comorbid conditions. Dialysists must pay more attention to reducing a patient's pain and suffering, both physical and psychological and improve the quality of life for the patients as much as possible. A consensus regarding eligibility for palliative care and the delivery of these inventions does not currently exist. The present study aimed to describe the implementation of palliative care for end-stage renal failure patients on peritoneal dialysis. A report on three cases. This study included three outpatients on peritoneal dialysis who received palliative care and died between January 2008 and June 2010. The patients' comorbidities, nutritional status, and functional status were evaluated using the Charlson comorbidity score, subjective global assessment, and Karnofsky Performance Score index, respectively. The Hamilton depression and Hamilton anxiety scales were also employed. The patients' clinical manifestations and treatments were reviewed. Each patient displayed 11-16 symptoms. The Charlson comorbidity scores were from 11 to 13, the subjective global assessment indicated that two patients were class assigned to "C" and one to class "B", and the mean Karnofsky index was <40. Among these patients, all experienced depression and two experienced anxiety, Low doses of hypertonic glucose solutions, skin care, psychological services, and tranquillizers were intermittently used to alleviate symptoms, after making the decision to terminate dialysis. The patients died 5 days to 2 months after dialysis withdrawal. The considerable burden associated with comorbid conditions, malnutrition, poor functional status, and serious psychological problems are predictors of poor patient prognoses. Withdrawal of dialysis, palliative care, and psychological interventions can reduce patient distress and improve the quality of life before death, with the care provided.

  11. [Massage and music therapy for relief of anxiety of cancer patients in palliative care].

    PubMed

    Mantovan, Franco; Rauter, Elisabeth; Müller, Irene

    2009-03-01

    In palliative care between 13.9 and 25 percent of all patients suffering from cancer show signs of anxiety disorders. Up to 75 percent of these patients suffer from non-pathologic anxiety, which has a negative impact on the patients' quality of life. Therefore it is important to provide interventions that are able to reduce anxiety of cancer patients. Massage and music therapy are effective interventions for minimizing anxiety of cancer patients in palliative care. An empathic attitude of the nurse increases the effect of the mentioned interventions. While there is evidence of the interventions mentioned it is yet necessary to further explore these in additional clinical trials to consolidate the already existing results.

  12. Dealing with palliative care patients' incomplete music therapy legacies: reflexive group supervision research.

    PubMed

    O'Callaghan, Clare; Petering, Helen; Thomas, Amy; Crappsley, Rebecca

    2009-01-01

    Legacies encompass treasured memories and items such as wills, publications, and songs, which help to validate lives. Legacy creation is encouraged by palliative care staff to help patients deal with loss and find personal meaning; the legacy works may also support the bereaved. Within the literature, however, there is no consideration of how staff deal with patients' incomplete legacies when patients relocate, deteriorate, or die. Our research focuses on this question: What experiences did four music therapists have with palliative care patients' incomplete tangible music therapy legacies? Data included transcripts from the therapists' discussions about patients' incomplete legacies in three reflexive group supervision sessions and further reflections written during transcript verification. Inductive thematic analysis yielded five themes: the nature of incomplete music therapy legacies; reasons for and feelings about these legacies; factors determining what music therapists do with them; considerations about their future "life"; and the ways therapists' shared reflections can support their future legacy work.

  13. Minor Children of Palliative Patients: A Systematic Review of Psychosocial Family Interventions

    PubMed Central

    Krattenmacher, Thomas; Beierlein, Volker; Grimm, Johann Christian; Bergelt, Corinna; Romer, Georg; Möller, Birgit

    2012-01-01

    Abstract Although the whole family is affected by a parent's palliative disease, palliative care research does not yet routinely consider patients' minor children. Children's and adolescents' psychosocial functioning may be impaired during prolonged parental disease with poor prognosis. Therefore, more and more health care providers are establishing clinical initiatives for families of palliative patients with minor children. However, the number of these family interventions, as well as their theoretical and empirical backgrounds and evidence base, has yet to be determined. The purpose of this study was to systematically review structured and published interventions for this target group, as well as empirical studies on these interventions. The evidence base and impact of interventions on families were considered. Literature published between 1980 and present focusing on psychosocial family-, child- or parent-centered interventions during palliative care was retrieved from PsycINFO®, Embase, MEDLINE®, CINAHL®, and PSYNDEX databases. Five interventions met the inclusion criteria. Programs focused on different populations, had diverse empirical and theoretical backgrounds and features, and were evaluated by studies of varying methodological quality. This systematic review illustrates the lack of well designed and elaborated intervention concepts and evaluation studies in this field, highlighting the necessity of conceptual and methodological rigor to inform clinical practice on a sustainable basis in the future. PMID:22849598

  14. Palliative Care Quality Indicators for Patients with End-Stage Liver Disease Due to Cirrhosis.

    PubMed

    Walling, A M; Ahluwalia, S C; Wenger, N S; Booth, M; Roth, C P; Lorenz, K; Kanwal, F; Dy, S; Asch, S M

    2017-01-01

    There are guidelines for the medical management of cirrhosis and associated quality indicators (QIs), but QIs focusing on standards for palliative aspects of care are needed. We convened a 9-member, multidisciplinary expert panel and used RAND/UCLA modified Delphi methods to develop palliative care quality indicators for patients with cirrhosis. Experts were provided with a report based on a systematic review of the literature that contained evidence concerning the proposed candidate QIs. Panelists rated QIs prior to a planned meeting using a standard 9-point RAND appropriateness scale. These ratings guided discussion during a day-long phone conference meeting, and final ratings were then provided by panel members. Final QI scores were computed and QIs with a final median score of greater than or equal to 7, and no disagreement was included in the final set. Among 28 candidate QIs, the panel rated 19 as valid measures of quality care. These 19 quality indicators cover care related to information and care planning (13) and supportive care (6). These QIs are evidence-based process measures of care that may be useful to improve the quality of palliative care. Research is needed to better understand the quality of palliative care provided to patients with cirrhosis.

  15. Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients.

    PubMed

    Morita, Tatsuya

    2004-11-01

    To clarify the prevalence and the characteristics of patients who received palliative sedation therapy for psycho-existential suffering, a questionnaire was sent to 105 responsible physicians at all certified palliative care units in Japan. The participants were requested to report the number of patients who received continuous deep sedation for refractory psycho-existential suffering during the past year, and to provide details of the 2 most recent patients. A total of 81 physicians returned questionnaires (response rate, 80%). Twenty-nine physicians (36%) reported clinical experience in continuous deep sedation for psycho-existential suffering. The overall prevalence of continuous deep sedation was calculated as 1.0% (90 cases/8,661 total patient deaths), and a total of 46 patient histories were collected. Performance status just before sedation was 3 or 4 in 96%, and predicted survival was 3 weeks or less in 94%. The suffering requiring sedation was feeling of meaninglessness/worthlessness (61%), burden on others/dependency/inability to take care of oneself (48%), death anxiety/fear/panic (33%), wish to control the time of death by oneself (24%), and isolation/lack of social support (22%). Before sedation, intermittent sedation and specialized psychiatric, psychological, and/or religious care had been performed in 94% and 59%, respectively; 89% of 26 depressed patients had received antidepressant medications. All competent patients (n=37) expressed explicit requests for sedation, and family consent was obtained in all cases where family members were available (n=45). Palliative sedation for psycho-existential suffering was performed in exceptional cases in specialized palliative care units in Japan. The patient condition was generally very poor, and the suffering was refractory to intermittent sedation and specialized psychiatric, psychological, and/or religious care. Sedation was performed on the basis of patient and family consent. These findings suggest that

  16. The problems experienced by patients with cancer and their needs for palliative care.

    PubMed

    Osse, Bart H P; Vernooij-Dassen, Myrra J F J; Schadé, Egbert; Grol, Richard P T M

    2005-09-01

    To investigate the problems that patients experience and their met- and unmet needs for professional help. This information is necessary to tailor palliative care to patient needs. Patients (n=94) with disseminated cancer completed a validated checklist with 90 potential problems and needs for palliative care (PNPC questionnaire). On average, patients experienced 37 problems (range 0-68) and required more professional attention for eight problems (range 0-71). The five most prevalent problems were: fatigue, heavy housework, coping with the unpredictability of the future, fear of metastases, and frustrations because I can do less than before. The five issues most in need of extra attention were: informational needs, coping with the unpredictability of the future, fear of metastases, fear of physical suffering, and difficulties remembering what was told (during consultations). Younger patients experienced more social, psychological, and financial problems. Some 10% of patients expressed a multitude of problems and needs. While patients with metastasized cancer experienced a wide variety of problems, they asked for more support for only a few specific problems. Evidently, "problems" are not synonymous with unmet needs. Therefore, not only problems but also needs for care should be assessed. A structural need for support to cope with fears of suffering and loss of autonomy was found. Ten percent of patients expressed a multitude of problems and needs and might benefit either from psychological counseling or better palliative care.

  17. Personal values and individual quality of life in palliative care patients.

    PubMed

    Fegg, Martin J; Wasner, Maria; Neudert, Christian; Borasio, Gian Domenico

    2005-08-01

    To evaluate the relationship between personal values and individual quality of life (iQoL) in palliative care patients, 75 patients with advanced cancer or amyotrophic lateral sclerosis (ALS) were asked to complete a self-report questionnaire concerning personal values and a semi-structured interview on their iQoL. Sixty-four patients took part in the study (56% cancer, 44% ALS). The most important personal values were benevolence, self-direction, and universalism, whereas power, achievement, and stimulation were the least important. Self-transcendence values were higher than self-enhancement values in all patients. Compared with healthy adults, palliative care patients scored significantly higher in benevolence and lower in self-enhancement values. Conservation values (security, conformity, tradition) were correlated with higher levels of iQoL (P=0.03). There were no significant differences between ALS and cancer patients. These data suggest that conservation values protect the patients' iQoL in the palliative care situation. The observed shift towards self-transcendence values may be related to coping processes of terminally ill patients. The relationship between self-transcendence values and iQoL should be further investigated.

  18. Effect of Opioids and Benzodiazepines on Clinical Outcomes in Patients Receiving Palliative Care: An Exploratory Analysis.

    PubMed

    Boland, Jason W; Allgar, Victoria; Boland, Elaine G; Oviasu, Osaretin; Agar, Meera; Currow, David C; Johnson, Miriam J

    2017-06-01

    Medications for symptom management in palliative care have associated, but poorly understood, harms. Drug-related harms have important clinical implications, may impact on patients' compliance and contribute to symptoms. To explore the longitudinal relationship between oral morphine equivalent daily dose (MEDD) and oral diazepam equivalent daily dose (DEDD) with functional, cognitive, and symptom outcomes in patients receiving palliative care. Secondary longitudinal analysis of cancer decedents (n = 235) was carried out from a palliative care randomized controlled trial with multiple outcome measures. At each time point, MEDD and DEDD were calculated. Multilevel modeling was used to investigate independent associations between MEDD and DEDD, and cognitive and gastrointestinal symptoms, quality of life (QoL), performance status, and survival. Participants were recruited from a specialist palliative care program in southern Adelaide, were expected to live ≥48 hours, had pain in the previous 3 months, and a baseline Folstein Mini-Mental Status Examination score ≥25. Cognitive and gastrointestinal symptoms, performance status, and QoL worsened over time. In the adjusted multilevel analysis, statistically significant relationships remained between MEDD/DEDD and worsening performance status (p = 0.001), DEDD and gastrointestinal effects (p < 0.001), MEDD and QoL (p < 0.022). Commonly used palliative medications were associated with deteriorating performance status. The lack of association between MEDD with gastrointestinal or cognitive symptoms underlines that these associations are not inevitable with close attention. This analysis highlights the importance of including other medications as confounders when exploring medication-related harms. An understanding of the risk-benefit balance of medications is needed to maximize net benefits for patients.

  19. [Satisfaction of principal caregivers of patients followed-up by palliative care teams].

    PubMed

    Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S

    2016-10-01

    To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

  20. Structural Challenges of Providing Palliative Care for Patients with Breast Cancer

    PubMed Central

    Khoshnazar, Tahereh Alsadat Khoubbin; Rassouli, Maryam; Akbari, Mohammad Esmaeil; Lotfi-Kashani, Farah; Momenzadeh, Syrus; Haghighat, Shahpar; Sajjadi, Moosa

    2016-01-01

    Introduction: To establish a palliative care system (PCS) in Iran, it is necessary to identify the potential barriers. Aim: This study aims to highlight the views of stakeholders to know the challenges of providing palliative care for women with breast cancer. Materials and Methods: Semi-structured in-depth interviews are used with purposeful sampling conducted in Tehran, Iran; from January to June 2015. Twenty participants were included in the study: nine patients with breast cancer and ten health-care providers. The interviews were analyzed using qualitative directed content analysis based on Donabedian model. Data credibility was examined using the criteria of Lincoln and Guba. Results: Based on the pattern of Avedis Donabedian model, two main categories were identified: (1) palliative care services in the health system still remain undefined and (2) lack of adequate care providers. The subcategories emerged from the main categories are: (1) Inexistent home care, (2) specialized palliative care being in high demand, lack of: (a) Rehabilitation program and guidelines, (b) treatment/training protocols, (c) inefficient insurance and out-of-pocket costs, (d) patient referral system, (e) nontransparency of job description, and (f) weakness of teamwork. Discussion: The findings of the study identify views and perceptions of patients as well as the health professionals around the challenges of providing palliative care. To establish a structured PCS, we need to meet the challenges and remove perceived barriers to, including but not limited to, building up knowledge and awareness of health professionals, educating professional, and developing updated, well-defined, and standard treatment protocols, tailored to local conditions. PMID:27803569

  1. Sleep Disturbances in Patients With Advanced Cancer in Different Palliative Care Settings.

    PubMed

    Mercadante, Sebastiano; Aielli, Federica; Adile, Claudio; Ferrera, Patrizia; Valle, Alessandro; Cartoni, Claudio; Pizzuto, Massimo; Caruselli, Amanda; Parsi, Renato; Cortegiani, Andrea; Masedu, Francesco; Valenti, Marco; Ficorella, Corrado; Porzio, Giampiero

    2015-12-01

    Information regarding sleep disturbances in the population with advanced cancer is meager. To assess the prevalence of sleep disturbances and possible correlations with associated factors in a large number of patients with advanced cancer admitted to different palliative care settings. This was an observational study performed in different settings of palliative care. A consecutive sample of patients with advanced cancer was prospectively assessed for a period of six months. Epidemiological and clinical data, treatments received in the last month, Karnofsky status, Edmonton Symptom Assessment System scores, and concomitant medical treatment were recorded. Patients were administered the Athens Insomnia Scale and the Hospital Anxiety and Depression Scale (HADS). A total of 820 patients were surveyed. Mean age was 69.7 years (SD 12.7), and 429 patients were males. Consistent sleep disturbances (moderate to maximum) were found in 60.8% of patients. Aged patients were less likely to have sleep disturbances, whereas a poor Karnofsky level was significantly associated with sleep problems. Breast, gastrointestinal, head and neck, lung, and prostate cancers were associated with sleep problems. Patients who had a secondary school or undergraduate education had less sleep disturbances. Hormone therapy and use of opioids and corticosteroids were positively associated with sleep disturbances, and there was a positive correlation of HADS-Anxiety and HADS-Depression scores with sleep disturbances. More than 60% of palliative care patients have relevant sleep disturbances. Several factors associated with sleep disorders have been identified and should prompt physicians to make a careful examination and subsequent treatment of these disturbances. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  2. Evaluation of two instruments of perceived symptom intensity in palliative care patients in an outpatient clinic.

    PubMed

    Saetra, Pia; Fossum, Mariann; Svensson, Elisabeth; Cohen, Marlene Z

    2016-03-01

    To evaluate the test-retest stability in assessments of perceived symptom intensity on the Edmonton Symptom Assessment System-revised and the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative. The possible interchangeability between the instruments and the patients' experiences of completing the instruments were also studied. The two instruments assess the same symptoms, but the symptom intensity is assessed on 11-point numerical scales on the Edmonton Symptom Assessment System-revised and on four-point verbal descriptive scales on the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative. Both instruments are commonly used; however, uncertainty exists about which instrument should be recommended and about the interchangeability of the instruments. This study used a test-retest design with inter-scale comparisons. Data from 54 patients with cancer who were receiving palliative care in an oncology outpatient clinic were self-reported by the patients in the clinic, at home and when patients returned to the clinic. The assessments on the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative verbal rating scales showed a higher level of test-retest stability than the assessments on the Edmonton Symptom Assessment System-revised numerical scoring scales, indicating higher reliability. The correspondence between the verbal categories and the numerical scores of symptom intensity were low because different verbal categories were used by patients who assessed the same numerical score. The test-retest stability in the assessments was higher on the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire Core 15 Palliative and the results show that assessments on the two instruments could not be used interchangeably. Therefore, the symptom instrument chosen must be specified

  3. Integrating early palliative care for patients with HIV: provider and patient perceptions of symptoms and need for services.

    PubMed

    Lofgren, Sarah; Friedman, Rachel; Ghermay, Rahwa; George, Maura; Pittman, John Richard; Shahane, Amit; Zeimer, Dorothy; Del Rio, Carlos; Marconi, Vincent C

    2015-12-01

    Increasingly clinicians are using palliative care to address the symptomatic and psychosocial effects of disease often missed by routine clinical care, termed "early" palliative care. Within an inner-city medical center, we began a program to integrate early palliative care into HIV inpatient care. Patient symptom burden and desired services were assessed and compared to provider perceptions of patient's needs. From 2010-2012, 10 patients, with a median CD4+ T-cell count of 32.5 cells/μL, and 34 providers completed the survey. Providers ranked their patients' fatigue, sadness, anxiety, sexual dysfunction, and body image significantly higher than patients it for themselves. Patients ranked medical care, pharmacy, social work, physical therapy, and housing as significantly more important to them than providers estimated them to be. These differences may reflect the fact that physicians often overlook patients' unmet basic needs. Early palliative care may narrow this gap between providers' and patients' perceptions of needs through good communication and targeting barriers, such as housing instability, which are vital to overcome for consistent long-term follow up.

  4. Working Toward Consensus: Providers' Strategies to Shift Patients From Curative to Palliative Treatment Choices

    PubMed Central

    Norton, Sally A.; Bowers, Barbara J.

    2013-01-01

    End-of-life decision making is a complex phenomenon and providers, patients, and families often have different views about the appropriateness of treatment choices. The results presented here are part of a larger grounded-theory study of reconciling decisions near the end of life. In particular, we examined how providers (N=15) worked near the end of patients′ lives toward changing the treatment decisions of patients and families from those decisions that providers described as unrealistic (i.e., curative) to those that providers described as more realistic (i.e., palliative). According to providers, shifting patients′ and families′ choices from curative to palliative was usually accomplished by changing patients′ and families′ understanding of the patient's overall “big picture” to one that was consistent with the providers′ understanding. Until patients and families shifted their understanding of the patient's condition—the big picture—they continued to make what providers judged as unrealistic treatment choices based on an inaccurate understanding of what was really going on. These unrealistic choices often precluded possibilities for a “good death.” According to providers, the purpose of attempting to shift the patient or proxy's goals was that realistic goals lead to realistic palliative treatment choices that providers associated with a good death. In this article we review strategies used by providers when they believed a patient's death was imminent to attempt to shift patients′ and families′ understandings of the big picture, thus ultimately shifting their treatment decisions. PMID:11746057

  5. The practice of palliative care from the perspective of patients and carers

    PubMed Central

    Sampson, Cathy; Finlay, Ilora; Byrne, Anthony; Snow, Veronica; Nelson, Annmarie

    2014-01-01

    Objectives The meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers. Methods Thematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care. Results The emotional experience of care is the most significant aspect documented by patients and carers. It refers to the process of care in key domains of respect, renewal, refuge and restorative care. Patients and carers described care as either enabling or directly provided. The emotional experience of care was not confined to psychosocial need and constituted a core practice drawing on professional expertise and interpersonal skills, some of which may be taken for granted by staff themselves. Conclusions The emotional experience of care is examined as a practice rather than a topic, acknowledging that patients and carers documented the performance of care and the resulting impact in a variety of situations. The emotional experience of care comprises key aspects of contextual care facilitating autonomy and connectedness. It is embedded in relationships mediated by communication and tenor of care. The perspective of patients and carers places the emotional experience of palliative care centrally. This has implications for future service evaluation and the incorporation of this skill-based outcome alongside more traditional outcome measures such as the amelioration of physical symptoms. PMID:24644204

  6. Palliative care for patients with HIV/AIDS admitted to intensive care units

    PubMed Central

    Souza, Paola Nóbrega; de Miranda, Erique José Peixoto; Cruz, Ronaldo; Forte, Daniel Neves

    2016-01-01

    Objective To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. Methods This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Results Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Conclusion Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit. PMID:27737420

  7. Palliative care for patients with HIV/AIDS admitted to intensive care units.

    PubMed

    Souza, Paola Nóbrega; Miranda, Erique José Peixoto de; Cruz, Ronaldo; Forte, Daniel Neves

    2016-09-01

    To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit.

  8. The meaning of occupation for patients in palliative care when in hospital.

    PubMed

    Eriksson, Lina; Öster, Inger; Lindberg, Margareta

    2016-10-01

    The aim of this study was to describe how patients in palliative care relate to occupation during hospitalization and to define the meaning it has for them. Eight inpatients in palliative care with various cancer diagnoses were interviewed one time. These interviews were transcribed and analyzed using qualitative content analysis. Patients experience occupations as meaningful when in hospital during the last period of their lives. They would like to be able to handle their own needs as much as possible. Staff behavior, the design of the environment, the lack of accessible occupations, and the degree to which patients can decide whether to receive or decline visits affect the possibility to make their wishes a reality. Our results also revealed that patients experience a sense of loss of their role, as well as a lack of control and participation. Our results confirm the importance of occupation and of patients having the option to and being given opportunities to take care of themselves when in palliative care. Further studies are needed to enable us to understand how organized occupations might influence patients' experience of being in a hospital during the final period of life.

  9. Individual Meaning-Centered Psychotherapy for palliative cancer patients in Lithuania. A case report.

    PubMed

    Sutkevičiūtė, Meda; Stančiukaitė, Monika; Bulotienė, Giedrė

    2017-01-01

    Patients with oncological diseases, especially palliative care patients, suffer from physical and psychological difficulties. The quality of life of such patients is bad, they do not have purpose to live and they feel anxiety and distress. In 1959 Victor Frankl wrote the book Man's Search for Meaning in which he stated that the driving force of human life lay in the ability to discern the meaning of faith and spirituality. Inspired by Frankl's ideas, the American psychiatrist William Breitbart with colleagues have developed both an individual and group model of Meaning-Centered Psychotherapy. Studies show that this therapy helps patients to cope with distress, to discover the meaning of life in palliative care patients, and to find the strength to look at life positively; also, it relieves the symptoms of illness. The Meaning-Centered Psychotherapy is integrated in various countries and has recently been initiated for palliative patients in Lithuania. The individual Meaning-Centered Psychotherapy was used in the case reviewed in this paper.

  10. Individual Meaning-Centered Psychotherapy for palliative cancer patients in Lithuania. A case report

    PubMed Central

    Sutkevičiūtė, Meda; Stančiukaitė, Monika; Bulotienė, Giedrė

    2017-01-01

    Patients with oncological diseases, especially palliative care patients, suffer from physical and psychological difficulties. The quality of life of such patients is bad, they do not have purpose to live and they feel anxiety and distress. In 1959 Victor Frankl wrote the book Man’s Search for Meaning in which he stated that the driving force of human life lay in the ability to discern the meaning of faith and spirituality. Inspired by Frankl’s ideas, the American psychiatrist William Breitbart with colleagues have developed both an individual and group model of Meaning-Centered Psychotherapy. Studies show that this therapy helps patients to cope with distress, to discover the meaning of life in palliative care patients, and to find the strength to look at life positively; also, it relieves the symptoms of illness. The Meaning-Centered Psychotherapy is integrated in various countries and has recently been initiated for palliative patients in Lithuania. The individual Meaning-Centered Psychotherapy was used in the case reviewed in this paper. PMID:28630594

  11. The feasibility of using technology to enhance the transition of palliative care for rural patients.

    PubMed

    Holland, Diane E; Vanderboom, Catherine E; Ingram, Cory J; Dose, Ann Marie; Borkenhagen, Lynn S; Skadahl, Phyllis; Pacyna, Joel E; Austin, Christine M; Bowles, Kathryn H

    2014-06-01

    Palliative care services for patients with life-limiting conditions enhance their quality of life. Most palliative care services, however, are located in hospitals with limited transitional care for patients who live in distant locations. The long-term goal of this program of research is to use existing technology for virtual visits to provide transitional care for patients initially hospitalized in an urban setting by a nurse practitioner located closer to patients' homes in distant, rural settings. The purpose of this proof-of-concept study was to determine the resources needed to use the system (efficiency) and the quality of the audio and visual components (effectiveness) to conduct virtual visits between a clinician at an academic center and community-dwelling adults living in rural locations. Guided by the Technology Acceptance Model, a mixed-methods field design was used. Because of the burden of testing technology with patients with life-limiting conditions, the sample included eight healthy adults. Participant satisfaction and perceptions of the ease of using the technology were also measured. Virtual visits were conducted using a 3G-enabled Apple iPad, cellular phone data service, and a Web-based video conference service. Participants and clinicians perceived the technology as easy to use. Observations revealed the importance of the visual cues provided by the technology to enhance communication, engagement, and satisfaction. Findings from this study will inform a subsequent study of technology-enhanced transitional care with palliative care patients.

  12. Home-based functional walking program for advanced cancer patients receiving palliative care: a case series

    PubMed Central

    2013-01-01

    Background Although meta-analyses have demonstrated that physical activity can positively impact quality of life outcomes in early stage cancer patients, it is not yet known whether these benefits can be extended to patients with advanced cancer. In a previous pilot survey of patients with advanced cancer with a median survival of 104 days, participants felt willing and able to participate in a physical activity intervention, and reported a strong preference for walking and home-based programming. Here, we report on the initial development and feasibility of a home-based functional walking program in patients with advanced cancer receiving palliative care. Methods Nine adult patients were recruited from outpatient palliative care clinics and palliative home care. A pilot intervention trial was conducted over a 6-week period. The McGill Quality of Life Questionnaire (MQOL), Late Life Function and Disability Instrument (LLFDI), Edmonton Symptom Assessment System (ESAS), Seniors Fitness Test, four-test balance scale, and grip strength, were performed pre- and post-intervention. Participants wore activPAL™ accelerometers to monitor ambulatory activity levels. Results Of the nine recruited participants, three participants dropped out prior to baseline testing due to hospital admission and feeling overwhelmed, and three participants dropped out during the intervention due to severe symptoms. Only three participants completed the intervention program, pre- and post-intervention assessments: two reported improvements in total MQOL scores, yet all three shared an overall trend towards worsening symptom and total fatigue scores post-intervention. Two participants passed away within 90 days of completing the intervention. Conclusions This case series demonstrates the challenges of a physical activity intervention in patients with advanced cancer receiving palliative care. Further feasibility research is required in this patient population. Trial registration This study is

  13. Palliative care and circumstances of dying in German ALS patients using non-invasive ventilation.

    PubMed

    Kühnlein, Peter; Kübler, Andrea; Raubold, Sabine; Worrell, Marcia; Kurt, Anja; Gdynia, Hans-Jürgen; Sperfeld, Anne-Dorte; Ludolph, Albert Christian

    2008-04-01

    Non-invasive ventilation (NIV) is known to improve quality of life and to prolong survival in amyotrophic lateral sclerosis (ALS) patients. However, little is known about the circumstances of dying in ventilated ALS patients. In the light of the debate on legalizing euthanasia it is important to provide empirical data about the process of dying in these patients. In a structured interview, 29 family caregivers of deceased ALS patients were asked about their own and the patient's attitude toward physician-assisted suicide (PAS) and euthanasia, circumstances of dying, and the use of palliative medication. Quantitative and qualitative content analysis was performed on the data. Non-recurring suicidal thoughts were reported by five patients. Three patients and seven relatives had thought about PAS. Seventeen caregivers described the patients' death as "peaceful", while choking was reported in six bulbar patients. In final stages of dying, the general practitioner (GP) was involved in the treatment of 10 patients, with palliative medication including sedatives and opiates being administered in eight cases. In conclusion, in contrast to the Netherlands, where 20% of terminal ALS patients die from PAS or euthanasia, only a small minority of our patients seems to have thought about PAS. The legal situation in Germany (where euthanasia is illegal), a bias due to the selection of NIV patients as well as a high percentage of religious patients and those with good levels of social support from family and friends, might account for this. Most of our patients died peacefully at home from carbon dioxide narcosis, but choking was described in some bulbar patients. Thus, palliative care, especially the use of opiates, anxiolytics and sedatives should be optimized, and the involvement of GP should be strongly encouraged, especially in bulbar patients.

  14. Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory.

    PubMed

    Beernaert, Kim; Haverbeke, Chloë; Van Belle, Simon; Deliens, Luc; Cohen, Joachim

    2017-07-01

    We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients. Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions. Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics. Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease. Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information. Copyright © 2017 Elsevier B.V. All rights reserved.

  15. [Transferring palliative-care patients from hospital to community care: A qualitative study].

    PubMed

    Correa-Casado, Matías; Granero-Molina, José; Hernández-Padilla, José Manuel; Fernández-Sola, Cayetano

    To know the experience of case-manager nurses with regard to transferring palliative-care patients from the hospital to their homes. Qualitative phenomenological study carried out in 2014-2015. Poniente and Almería health districts, which referral hospitals are Poniente Hospital and Torrecárdenas Hospital, respectively. A purposive sample comprised of 12 case-manager nurses was recruited from the aforementioned setting. Theoretical data saturation was achieved after performing 7 in-depth individual interviews and 1 focus group. Data analysis was performed following Colaizzi's method. Three themes emerged: (1) 'Case-management nursing as a quality, patient-centred service' (2) 'Failures of the information systems', with the subthemes "patients" insufficient and inadequate previous information" and "ineffective between-levels communication channels for advanced nursing"; (3) 'Deficiencies in discharge planning', with the subthemes "deficient management of resources on admission", "uncertainty about discharge" and "insufficient human resources to coordinate the transfer". Case-manager nurses consider themselves a good-quality service. However, they think there are issues with coordination, information and discharge planning of palliative patients from hospital. It would be useful to review the communication pathways of both care and discharge reports, so that resources needed by palliative patients are effectively managed at the point of being transferred home. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

  16. [A qualitative study of cancer patients receiving palliative support in hospital care].

    PubMed

    Getino Canseco, María

    2013-09-01

    This article focuses on patients with cancer during the terminal phase. It deals with the care that individuals need after trying to seek health solutions in different hospitals when the disease is deemed incurable and they then require palliative care (PC) to obtain welfare and assist them to die. In the Spanish health system these patients are cared for in palliative care units or services. The main objective of palliative care is to give comfort. Comforting is destined to alleviate and support patients and families during the process of health / disease / care / patient death. During this period, it is important to care for the ailing body. Similarly, when a disease is incurable, the pain and suffering runs its inexorable course and leaves perceptible traces. These signs can be an indication that death is nigh. Although scientific advances have produced positive results in the control of pain, in some cases there are critical moments when situations of misery and despair arise for the terminal patients.

  17. Results of a transparent expert consultation on patient and public involvement in palliative care research

    PubMed Central

    Daveson, Barbara A; de Wolf-Linder, Susanne; Witt, Jana; Newson, Kirstie; Morris, Carolyn; Higginson, Irene J; Evans, Catherine J

    2015-01-01

    Background: Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking. Aim: To determine an optimal user-involvement model for palliative care research. Design: We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings. Setting/participants: Participants involved in palliative care research were invited to a global research institute, UK. Results: A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility. Conclusion: For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research. PMID:25931336

  18. [Analysis of palliative sedation in hospitalised elderly patients: Effectiveness of a protocol].

    PubMed

    Mateos-Nozal, Jesús; García-Cabrera, Lorena; Montero Errasquín, Beatriz; Cruz-Jentoft, Alfonso José; Rexach Cano, Lourdes

    2016-01-01

    To measure changes in the practice of palliative sedation during agony in hospitalised elderly patients before and after the implementation of a palliative sedation protocol. A retrospective before-after study was performed in hospitalised patients over 65 years old who received midazolam during hospital admission and died in the hospital in two 3-month periods, before and after the implementation of the protocol. Non-sedative uses of midazolam and patients in intensive care were excluded. Patient and admission characteristics, the consent process, withdrawal of life-sustaining treatments, and the sedation process (refractory symptom treated, drug doses, assessment and use of other drugs) were recorded. Association was analysed using the Chi(2) and Student t tests. A total of 143 patients were included, with no significant differences between groups in demographic characteristics or symptoms. Do not resuscitate (DNR) orders were recorded in approximately 70% of the subjects of each group, and informed consent for sedation was recorded in 91% before vs. 84% after the protocol. Induction and maintenance doses of midazolam followed protocol recommendations in 1.3% before vs 10.4% after the protocol was implemented (P=.02) and adequate rescue doses were used in 1.3% vs 11.9% respectively (P=.01). Midazolam doses were significantly lower (9.86mg vs 18.67mg, P<.001) when the protocol was used than when it was not used. Ramsay sedation score was used in 8% vs. 12% and the Palliative Care Team was involved in 35.5% and 16.4% of the cases (P=.008) before and after the protocol, respectively. Use of midazolam slightly improved after the implementation of a hospital protocol on palliative sedation. The percentage of adequate sedations and the general process of sedation were mostly unchanged by the protocol. More education and further assessment is needed to gauge the effect of these measures in the future. Copyright © 2015 SEGG. Published by Elsevier Espana. All rights

  19. Evaluation of Spiritual Needs of Patients with Advanced Cancer in a Palliative Care Unit

    PubMed Central

    Valls, Joan; Porta, Josep; Viñas, Juan

    2014-01-01

    Abstract Introduction: Spiritual needs play an important role in palliative care as both a clinical dimension and a therapeutic strategy. However, recent studies have shown that the management of this dimension still remains a challenge at the clinical level of palliative care. Goals: Our goal was to evaluate the spiritual needs of patients diagnosed with advanced and terminal cancer by the palliative care unit of a hospital in Barcelona, Spain. Methods: An observational study was conducted that involved 50 patients who were recruited between May 2007 and January 2008. A questionnaire was used which included 28 items selected from a review of the literature; the responses were analyzed using a five-point Lickert scale. The results were grouped in 11 categories corresponding to different spiritual needs. Results: Two spiritual needs emerged as the most relevant for the patients: their need to be recognized as a person until the end of their life and their need to know the truth about their illness. The least important spiritual needs were identified as those: for continuity and an afterlife; to get rid of obsessions; to achieve freedom from blame and to be able to forgive others; and the need for reconciliation and to feel forgiven by others. Conclusions: When patients knew the truth about their illnesses and they were treated with dignity, their most important needs were likely to be covered. These results suggest that patients receiving palliative care wish to live for the present with as much normality as possible and show only minor concern for their past and future. PMID:24745870

  20. The lung cancer patient, the pneumologist and palliative care: a developing alliance.

    PubMed

    Blum, Torsten; Schönfeld, Nicolas

    2015-01-01

    Considerable evidence is now available on the value of palliative care for lung cancer patients in all stages and at all times during the course of the disease. However, pneumologists and their institutions seem to be widely in arrears with the implementation of palliative care concepts and the development of integrated structures. This review focuses on the available evidence and experience of various frequently unmet needs of lung cancer patients, especially psychological, social, spiritual and cultural ones. A PubMed search for evidence on these aspects of palliative care as well as on barriers to the implementation, on outcome parameters and effectiveness, and on structure and process quality was performed with a special focus on lung cancer patients. As a consequence, this review particularly draws pneumologists' attention to improving their skills in communication with the patients, their relatives and among themselves, and to establish team structures with more far-reaching competences and continuity than existing multilateral cooperations and conferences can provide. Ideally, any process of structural and procedural improvement should be accompanied by scientific evaluation and measures for quality optimisation. Copyright ©ERS 2015.

  1. [Influence of music on the quality of life of palliative cancer patients].

    PubMed

    Polt, Günter; Fink, Margit; Schieder, Helga; Tanzmeister, Silke

    2014-05-01

    A small prospective, multicentre study examined the effect of a perceptual acoustic stimulus (music) on quality of life of palliative cancer patients with special reference to pain.14 test subjects (m = 4, w = 10; age 67.6 (SD = 9.7)) in stationary or mobile care situation were included. The current therapy has not been modified.Each subject received a CD with 12 songs, an information folder, a guide to using the CD as well as a questionnaire.The offered music therapy was experienced by all study participants (100 %) as helpful. The effect was seen differently in psychological, physical, spiritual, and social quality of life. The pain was reduced nociable in 11 out of 14 participants.From the experience of the autors we demand to offer and enable music therapy in palliative care to each patient, but also adapt to their individual needs.

  2. Perceptions of family members of palliative medicine and hospice patients who experienced music therapy.

    PubMed

    Gallagher, Lisa M; Lagman, Ruth; Bates, Debbie; Edsall, Melissa; Eden, Patricia; Janaitis, Jessica; Rybicki, Lisa

    2017-06-01

    Evidence shows that music therapy aids in symptom management and improves quality of life for palliative medicine and hospice patients. The majority of previous studies have addressed patient needs, while only a few addressed the needs of family members. The primary purpose of this study was to understand family members' perceptions of music therapy experienced by a relative in palliative medicine or hospice. Patient self-reported scales and music therapist assessment of change were also investigated. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after music therapy sessions. One family member present during the session assessed perceived effect on the patient's pain, anxiety, depression, shortness of breath, stress level, restlessness, comfort level, mood, and quality of life. The effect on family member's stress level, quality of life, and mood and helpfulness of the music therapy session for the patient and self were studied. Recommendations about future patient participation in music therapy and qualitative comments were also solicited. Fifty family member/patient dyads participated in the study. Family member perceptions were positive, with 82% of responders indicating improvement for self and patient in stress, mood, and quality of life; 80% rating the session as extremely helpful; and 100% of 49 recommending further music therapy sessions for the patient. Patients reported statistically significant improvement in pain, depression, distress, and mood scores. Family members of patients in palliative medicine and hospice settings reported an immediate positive impact of music therapy on the patient and on themselves. More research needs to be conducted to better understand the benefits of music therapy for family members.

  3. Art therapy for terminal cancer patients in a hospice palliative care unit in Taiwan.

    PubMed

    Lin, Ming-Hwai; Moh, Shwu-Lan; Kuo, Yu-Cheng; Wu, Pin-Yuan; Lin, Chiung-Ling; Tsai, Mei-Hui; Chen, Tzeng-Ji; Hwang, Shinn-Jang

    2012-03-01

    Even though terminal cancer patients receive help from a hospice palliative care team, they have to suffer the pressure of death with deteriorating conditions. This study aims to evaluate the effect of art therapy for these terminal cancer patients. The patients involved were terminal cancer patients who were under the care of team members, which included physicians, nurses, social workers, clergy, art therapists, and volunteers in a hospice palliative care unit in Taiwan. The art therapy in our study took the form of visual fine art appreciation and hands-on painting. The effects of the art therapy were evaluated according to patients' feelings, cognitions, and behaviors. There were 177 patients (105 males and 72 females; mean age: 65.4 ±15.8 years) in the study. Each patient received a mean of 2.9 ± 2.0 sessions of the art therapy and produced a mean of 1.8 ± 2.6 pieces of art. During the therapy, most patients described their feelings well, and created art works attentively. Patients expressed these feelings through image appreciation and hands-on painting, among which the landscape was the most common scene in their art. After the therapy, the mean score of patients' artistic expressions (one point to each category: perception of beauty, art appreciation, creativity, hands-on artwork, and the engagement of creating artwork regularly) was 4.0 ± 0.7, significantly higher than the score before therapy (2.2 ± 1.4, p < 0.05). During the therapy, 70% of patients felt much or very much relaxed in their emotional state and 53.1% of patients felt much or very much better physically. Terminal cancer patients in a hospice palliative care unit in Taiwan may benefit from art therapy through visual art appreciation and hands-on creative artwork.

  4. Use of non-pharmacological interventions for comforting patients in palliative care: a scoping review.

    PubMed

    Coelho, Adriana; Parola, Vítor; Cardoso, Daniela; Bravo, Miguel Escobar; Apóstolo, João

    2017-07-01

    Palliative care aims to provide the maximum possible comfort to people with advanced and incurable diseases. The use of non-pharmacological interventions to promote comfort in palliative care settings has been increasing.However, information on implemented and evaluated interventions, their characteristics, contexts of application, and population is scattered in the literature, hampering the formulation of accurate questions on the effectiveness of those interventions and, consequently, the development of a systematic review. The objective of this scoping review is to examine and map the non-pharmacological interventions implemented and evaluated to provide comfort in palliative care. This scoping review considered all studies that focused on patients with advanced and incurable diseases, aged 18 years or older, assisted by palliative care teams. This scoping review considered all studies that addressed non-pharmacological interventions implemented and evaluated to provide comfort for patients with advanced and incurable diseases.It considered non-pharmacological interventions implemented to provide not only comfort but also well-being, and relief of pain, suffering, anxiety, depression, stress and fatigue which are comfort-related concepts. This scoping review considered all non-pharmacological interventions implemented and evaluated in the context of palliative care. This included home care, hospices or palliative care units (PCUs). This scoping review considered quantitative and qualitative studies, and systematic reviews. A three-step search strategy was undertaken: 1) an initial limited search of CINAHL and MEDLINE; 2) an extensive search using all identified keywords and index terms across all included databases; and 3) a hand search of the reference lists of included articles.This review was limited to studies published in English, Spanish and Portuguese in any year. A data extraction instrument was developed. Two reviewers extracted data independently. Any

  5. Estimating Need for Palliative External Beam Radiotherapy in Adult Cancer Patients

    SciTech Connect

    Nieder, Carsten; Pawinski, Adam; Haukland, Ellinor; Dokmo, Raymond; Phillipi, Isabelle; Dalhaug, Astrid

    2010-01-15

    Purpose: Older surveys and benchmark data from different sources have suggested that 46-53% of all radiotherapy courses were administered with palliative intent. In Sweden, 87 annual palliative treatment courses per 100,000 inhabitants were registered in 2001, mainly for the treatment of bone and brain metastases (95% confidence interval [CI] 85-89). The corresponding number for Norway was 95 (95% CI 93-98) in 2004. New data are lacking, although new systemic treatment options might alter this number. Methods and Materials: We collected prospective data on the use of palliative external beam radiotherapy for adult cancer patients during a 12-month period between 2007 and 2008. All patients (median age 69 years) were treated in one Norwegian county and had unlimited, rapid access to treatment. Efforts were made to account for potential overuse. Results: Most irradiated patients had skeletal target volumes, followed by nonbony thoracic targets and brain metastases. In the present population, 133 annual treatments per 100,000 inhabitants were registered (after correction for overuse, but not accounting for radiosurgery of brain metastases and emerging treatment options; e.g., stereotactic radiotherapy for lung and liver metastases; 95% CI 119-149). Because some patients received simultaneous treatment to different target volumes, the annual number of target volumes amounted to 175 per 100,000 inhabitants (95% CI 161-191). Conclusion: The need for palliative radiotherapy has not decreased and might be greater than previously estimated. In regions with a significantly different cancer incidence, age structure, and other socioeconomic factors than northern Europe, separate analyses should be conducted.

  6. Self-assessment in cancer patients referred to palliative care: a study of feasibility and symptom epidemiology.

    PubMed

    Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens; Petersen, Morten Aa; Jensen, Pernille T; Pedersen, Lise; Hoermann, Linda; Helleberg, Carsten; Sjogren, Per

    2002-01-15

    Research in palliative care is considered difficult due to the poor health of patients. However, patient-provided data are essential for a thorough description of patient symptomatology and for the evaluation of care. The authors examined the feasibility of a questionnaire-based study using the European Organization for Research and Treatment of Cancer quality-of-life instrument EORTC QLQ-C30, the Edmonton Symptom Assessment System (ESAS), and the Hospital Anxiety and Depression Scale (HADS) in cancer patients who were receiving palliative care. This report describes the symptomatology of participating patients and examines differences in symptomatology between patients in three palliative care functions: inpatient, outpatient, and palliative home care. Of 267 eligible patients who were referred to a department of palliative medicine, initial self-assessment questionnaires were obtained from 176 patients (65.9%). The 91 nonparticipants were older and had lower Karnofsky Performance status (KPS) values than the participants. Almost all participating patients suffered from impaired role function and physical function and had high levels of pain, fatigue, and other symptoms. According to the HADS, 47% of patients suffered from depression. Outpatients had better scores than inpatients and patients in palliative home care for physical function, role function, cognitive function, depression, and inactivity. It is possible to carry out a questionnaire-based study of symptomatology in consecutive cancer patients in palliative care, achieving rather complete data from the participants. The symptomatology in these patients was very pronounced. The questionnaires were able to detect clinically important differences between places of service.

  7. Providing Palliative Care to Patients with Cancer: Addressing the Needs in Kenya

    PubMed Central

    Malloy, Pam; Boit, Juli; Tarus, Allison; Marete, Joyce; Ferrell, Betty; Ali, Zipporah

    2017-01-01

    Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients’ ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues. PMID:28217729

  8. [Promotion of home shifts for terminal cancer patients through intervention of visitor palliative care team].

    PubMed

    Shiraishi, Ko; Chigira, Mayumi; Tsuyuki, Naoko; Hozaki, Kyoko; Murotsu, Keizo; Umeki, Mikiko; Harada, Naohiro; Hirata, Satomi; Otsuka, Yuko; Hara, Hiroko

    2013-12-01

    It has been recommended that terminal cancer patients be shifted from the hospital to their homes. In our hospital, a visitor palliative care team was started for the purpose of the early introduction of palliative care, and home shifts were promoted. The results of home shifts by the visitor palliative care team from 2008 to 2012 were examined. Home shifts were possible for 27 cases out of 108 cases intervened. In 12 cases, there were at-home deaths, and the median at-home period was 55 days. In the group that could not be shifted, the at-home death rate and application rate of nursing care insurance were low. Additionally, the length of stay (median) for patients who died in hospitalization was 8 days for the group that could be shifted and 17 days for the group that could not be shifted. It was felt that effective communication with local health care facilities is important for a successful home shift. Early and adequate preparations for the treatment and care of terminal cancer patients undergoing home shift are important, and in this regard, a review of the current provisions of nursing care insurance is necessary.

  9. Aicardi syndrome: epilepsy surgery as a palliative treatment option for selected patients and pathological findings.

    PubMed

    Podkorytova, Irina; Gupta, Ajay; Wyllie, Elaine; Moosa, Ahsan; Bingaman, William; Prayson, Richard; Knight, Elia M Pestana

    2016-12-01

    The optimal treatment for medically refractory epilepsy in Aicardi syndrome (AS) is still unclear. Palliative surgical treatment, including vagus nerve stimulation and corpus callosotomy, has therefore been used. There is limited data on the role of resective epilepsy surgery as a treatment choice in patients with AS. Here, we describe the seizures, anatomo-pathological findings, and neurodevelopmental outcome of palliative epilepsy surgery in two children with AS who had resective epilepsy surgery at the Cleveland Clinic. The related literature is also reviewed. Case 1 had a left functional hemispherectomy and was free of seizures and hypsarrhythmia for six months after surgery. Her gross motor skills improved after surgery. Outcome at 43 months was 1-3 isolated spasms per day. Case 2 had a right fronto-parietal lobectomy. Her seizures improved in frequency and severity, but remained daily after epilepsy surgery. Neurodevelopment changes included improved alertness and recognition of caregivers. This patient died 21 months after epilepsy surgery of unclear causes. Surgical pathology in both cases showed focal cortical dysplasia associated with other findings, such as nodular heterotopia and polymicrogyria. Epilepsy surgery could be an alternative palliative treatment choice in selective cases of AS, but studies on a larger patient cohort are needed to identify the possible role of surgery in children with AS. The complexity of the pathological findings may offer an explanation for the severity of seizures in AS.

  10. Palliative Care and the Humanities: Centralizing the Patient at the End of Life.

    PubMed

    Franke, Richard J

    2016-03-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike.

  11. Palliative Care and the Humanities: Centralizing the Patient at the End of Life

    PubMed Central

    Franke, Richard J.

    2016-01-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike. PMID:27505023

  12. Recruiting palliative patients for a large qualitative study: some ethical considerations and staff dilemmas.

    PubMed

    Tan, Heather; Wilson, Anne; Olver, Ian; Barton, Christopher

    2010-01-01

    This article reports on the processes of staff members in referring patients to a study that explored the experience of palliative patients, family members, and health professionals with the implementation of a family meeting model as an instrument of spiritual care. The reported qualitative study was undertaken in two large metropolitan Australian hospitals. Criteria other than those set by the study protocol were employed by staff members referring patients. These included subjective opinions of who was suitable to refer and perceptions of patients' attitudes to religion or spirituality. Such practices raise ethical issues and may compromise studies that have received ethics approval. Crown Copyright (c) 2010. Published by Elsevier Inc. All rights reserved.

  13. Trajectories of Terminally Ill Patients' Cardiovascular Response to Receptive Music Therapy in Palliative Care.

    PubMed

    Warth, Marco; Kessler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J

    2016-08-01

    Relaxation interventions are frequently used to promote symptom relief in palliative care settings, but little is known about the underlying mechanisms. The present analysis aimed at examining the psychophysiological pathways of terminally ill patients' cardiovascular response to a live music therapy vs. prerecorded mindfulness exercise. Eighty-four patients of a palliative care unit were randomly assigned to either of the two interventions. Multilevel modeling was used to analyze trajectories of physiological change. Vagally mediated heart rate variability (VM-HRV) and blood volume pulse amplitude (BVP-A) served as indices of autonomic nervous system response. Participants' gender, age, baseline scores, self-rated pain, and assignment to treatment were entered to the models as predictors. Both VM-HRV and BVP-A showed significant linear and quadratic trends over time, as well as substantial heterogeneity among individuals' trajectories. Baseline scores, pain, and treatment significantly accounted for random variation in VM-HRV intercepts. BVP-A levels were significantly higher in women than in men. Moreover, assignment to treatment significantly accounted for differences in the linear slopes of peripheral blood flow. Higher levels of VM-HRV in the music therapy group highlight the importance of a therapeutic relationship for the effectiveness of relaxation interventions in end-of-life care settings. Music therapy caused significantly stronger reductions of vascular sympathetic tone and, therefore, may be indicated in the treatment of pain and stress-related symptoms in palliative care. Initial self-ratings of pain moderated patients' physiological response and need to be taken into account in clinical practice and future theory building. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  14. Delirium Frequency and Risk Factors Among Patients With Cancer in Palliative Care Unit.

    PubMed

    Şenel, Gülcin; Uysal, Neşe; Oguz, Gonca; Kaya, Mensure; Kadioullari, Nihal; Koçak, Nesteren; Karaca, Serife

    2017-04-01

    Introductıon: Delirium is a complex but common disorder in palliative care with a prevalence between 13% and 88% but a particular frequency at the end of life yet often remains insufficiently diagnosed and managed. The aim of our study is to determine the frequency of delirium and identify factors associated with delirium at palliative care unit. Two hundred thirteen consecutive inpatients from October 1, 2012, to March 31, 2013, were studied prospectively. Age, gender, Palliative Performance Scale (PPS), Palliative Prognostic Index (PPI), length of stay in hospital, and delirium etiology and subtype were recorded. Delirium was diagnosed with using Delirium Rating Scale (DRS) and Diagnostic and Statistical Manual of Mental Disorders, 4th Edition Text Revision ( DSM-IV TR) criteria. The incidence of delirium among the patients with cancer was 49.8%. Mean age was 60.3 ± 14.8 (female 41%, male 59%, PPS 39.8%, PPI 5.9 ± 3.0, length of stay in hospital 8.6 ± 6.9 days). Univariate logistic regression analysis indicated that use of opioids, anticonvulsants, benzodiazepines, steroids, polypharmacy, infection, malnutrition, immobilization, sleep disturbance, constipation, hyperbilirubinemia, liver/renal failure, pulmonary failure/hypoxia, electrolyte imbalance, brain cancer/metastases, decreased PPS, and increased PPI were risk factors. Subtypes of delirium included hypoactive 49%, mixed 41%, and hyperactive 10%. The communicative impediments associated with delirium generate distress for the patient, their family, and health care practitioners who might have to contend with agitation and difficulty in assessing pain and other symptoms. To manage delirium in patients with cancer, clinicians must be able to diagnose it accurately and undertake appropriate assessment of underlying causes.

  15. Integrating Palliative Care into the Care of Neurocritically Ill Patients: A Report from The IPAL-ICU (Improving Palliative Care in the Intensive Care Unit) Project Advisory Board and the Center to Advance Palliative Care

    PubMed Central

    Frontera, Jennifer A.; Curtis, J. Randall; Nelson, Judith E.; Campbell, Margaret; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.; Brasel, Karen J.; Weiss, Stefanie P.; Weissman, David E.

    2015-01-01

    Objectives To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; To discuss key prognostic aids and their limitations for neurocritical illnesses; To review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; To describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. Data Sources A search of Pubmed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term “palliative care,” “supportive care,” “end-of-life care,” “withdrawal of life-sustaining therapy,” “limitation of life support,” “prognosis,” or “goals of care” together with “neurocritical care,” “neurointensive care,” “neurological,” “stroke,” “subarachnoid hemorrhage,” “intracerebral hemorrhage,” or “brain injury.” Data Extraction and Synthesis We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert Advisory Board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Conclusions Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support, will

  16. Palliative care and spiritual well-being in lung cancer patients and family caregivers.

    PubMed

    Sun, Virginia; Kim, Jae Y; Irish, Terry L; Borneman, Tami; Sidhu, Rupinder K; Klein, Linda; Ferrell, Betty

    2016-12-01

    Spiritual well-being is an important dimension of quality of life (QOL) and is a core component of quality oncology and palliative care. In this analysis, we aimed to describe spiritual well-being outcomes in a National Cancer Institute (NCI)-supported Program Project that tested the effectiveness of an interdisciplinary palliative care intervention in lung cancer patients and their family caregivers (FCGs). Patients undergoing treatments for NSCLC and their FCGs were enrolled in a prospective, quasi-experimental study. Patients and FCGs in the intervention group were presented at interdisciplinary care meetings and received four educational sessions that included one session focused on spiritual well-being. Spiritual well-being for patients was measured using the FACIT-Sp-12, and FCG spiritual well-being was measured using the COH-QOL-FCG spiritual well-being subscale. Multivariate analysis of covariance was undertaken for subscale and item scores at 12 weeks, controlling for baseline, by religious affiliations (yes or no) and group assignment. Religiously affiliated patients reported better scores in the Faith subscale and items on finding strength and comfort in faith and spiritual beliefs compared to non-affiliated patients. Non-affiliated patients had better scores for feeling a sense of harmony within oneself. By group, patients who received the intervention had significantly better scores for the Meaning/Peace subscale. Our findings support the multidimensionality of spiritual well-being that includes constructs such as meaning and faith for lung cancer patients and FCGs with or without religious affiliations. Palliative care interventions should include content that targets the spiritual needs of both patients and FCGs. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

  17. Palliative Care

    MedlinePlus

    ... Feeding Your 1- to 2-Year-Old Palliative Care KidsHealth > For Parents > Palliative Care A A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...

  18. Satisfaction with and Perception of Pain Management among Palliative Patients with Breakthrough Pain: A Qualitative Study.

    PubMed

    Pathmawathi, Subramanian; Beng, Tan Seng; Li, Lee Mei; Rosli, Roshaslina; Sharwend, Supermanian; Kavitha, Rasaiah R; Christopher, Boey Chiong Meng

    2015-08-01

    Breakthrough pain is a significant contributor to much suffering by patients. The experience of intense pain may interfere with, and affect, daily life functioning and has major consequences on patients' well-being if it is not well managed. The area of breakthrough pain has not been fully understood. This study thus aimed to explore the experiences of breakthrough pain among palliative patients. A qualitative study based on a series of open-ended interviews among 21 palliative patients suffering from pain at an urban tertiary hospital in Malaysia was conducted. Five themes were generated: (i) pain viewed as an unbearable experience causing misery in the lives of patients, (ii) deterioration of body function and no hope of recovery, (iii) receiving of inadequate pain management for pain, (iv) insensitivity of healthcare providers toward patients' pain experience, and (v) pain coping experiences of patients. The findings revealed that nonpharmacologic approaches such as psychosocial support should be introduced to the patients. Proper guidance and information should be given to healthcare providers to improve the quality of patient care. Healthcare providers should adopt a sensitive approach in caring for patients' needs. The aim is to meet the needs of the patients who want to be pain free or to attain adequate relief of their pain for breakthrough pain.

  19. Attitudes of patients and staff to research in a specialist palliative care unit.

    PubMed

    Ross, Catriona; Cornbleet, Mike

    2003-09-01

    Many randomized trials in specialist palliative care (SPC) have failed to recruit sufficient numbers of patients. A questionnaire was designed to assess the attitudes of inpatients of a SPC unit to taking part in research. Only 50% of patients were considered physically and mentally fit for interview. Forty patients and 13 nurses were asked to indicate their willingness to take part, or for their patients to take part, in research in general and then in three hypothetical trials. Reasons for their responses were analysed. The patients were generally agreeable to trial participation (66% 'quite happy' or 'very happy'). The nurses were strongly in favour of research participation for the same group of patients (92% 'quite happy' or 'very happy'). The most invasive study involving venepuncture and random drug allocation had the least favourable response (46% of patients and 54% of nurses 'quite happy' or 'very happy'). A trial of reflexology attracted 77% of patients, while 62% were happy to take part in a study involving mood assessment and interview. Factors deterring willingness to participate included the need for record keeping by the patient and concern about potential emotional strain. The nurses correctly identified some of the factors deterring patients, but often their willingness for trial participation did not match that of the patient. Although there is support for research among the small number of potential trial entrants in specialist palliative care units, their limited physical and emotional reserves make careful attention to appropriate trial design essential to the success of future studies.

  20. Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.

    PubMed

    Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

    2017-10-01

    Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.

  1. Development of palliative medicine for cancer patients in Japan: from isolated voluntary effort to integrated multidisciplinary network.

    PubMed

    Eguchi, Kenji

    2010-09-01

    The paradigm of palliative care in cancer medicine has shifted from only care of terminally ill patients to earlier intervention for them in the recent 15 years. The concept of palliative medicine was founded in Japan in the 1970s. During the past 15 years, various new drugs and interventions have been introduced mainly for pain control, which is one of the major problems in the area of palliative medicine in cancer. According to the aim of the Cancer Control Act established in Japan (2006), patients and their families will be able to access easily integrated high-quality cancer care wherever they live at the time of 2016. Systematic and continuous education for medical staff is mandatory, and a major breakthrough for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities in Japan.

  2. [Constipation in Patients with Incurable Cancer - Recommendations of the German S3 Guideline 'Palliative Medicine'].

    PubMed

    Wirz, Stefan; Simon, Steffen; Frieling, Thomas; Bausewein, Claudia; Voltz, Raymond; Pralong, Anne; Mönig, Stefan; Follmann, Markus; Holtmann, Martin; Becker, Gerhild

    2016-08-01

    According to the German S3-guideline 'Palliative Medicine' which has been supported by the German Guideline Program in Oncology, constipation in palliative patients requires a consistent prophylaxis and therapy. Constipation is caused by immobilisation, poor health, exsiccosis, a low-fiber diet or a preexisting functional constipation. Further important causes are substances with constipating side effects, such as opioids or anticholinergic drugs. Pragmatically, constipation should be assessed by subjective parameters such as the feeling of incomplete evacuation, straining, or other complaints. Objective parameters are hard stool or reduced number of bowel movements. For the early detection of constipation the amount of the stool mass and the stool frequency are applicable. If constipation occurs, a standardized escalating protocol applying adequate fluid intake, a high fibre diet, and laxatives is recommended. New prokinetic agents, secretagogues, or opioid antagonists may be used as reserve drugs. © Georg Thieme Verlag KG Stuttgart · New York.

  3. Timing of referral to inpatient palliative care services for advanced cancer patients and earlier referral predictors in mainland China.

    PubMed

    Gu, Xiaoli; Cheng, Wenwu; Chen, Menglei; Liu, Minghui; Zhang, Zhe

    2016-10-01

    Routine early integration of palliative care with advanced cancer management is not yet a part of standard practice in many countries, including mainland China. Whether patients in China suffering from advanced cancer are referred to palliative care services in a timely manner remains unclear. We sought to investigate the timing of palliative care referral of Chinese cancer patients at our center and its predictors. Retrospective medical data including demographic characteristics and referral information were collected for analysis. A total of 759 patients referred to our palliative care unit (PCU) from January of 2007 to December of 2013 were included in the final analysis. The mean age of the 759 patients included in the study was 62.89 years (range 61.95-63.82). Some 369 patients (48.6%) were male and 559 (73.6%) Shanghainese (indigenous). Lung cancer (17.9%) was the most common diagnosis. The time interval since enrollment into the PCU until a patient's death (length of stay, LOS) was calculated. A longer LOS indicated earlier referral to inpatient PC services. The median LOS was 21 days (CI 95% = 19.79-22.21). Multivariate analysis showed that whether or not the patient was indigenous (p = 0.002) and younger than 65 (p = 0.031) were independent factors for a longer LOS. Such other characteristics as gender and primary cancer type bore no relationship to LOS. Our findings demonstrate that Chinese cancer patients are referred relatively late in the course of their disease to inpatient palliative care services. To overcome the barriers to early integration of palliative care into a patient's treatment plan, accurate information about palliative care must be provided to both oncologists and patients via comprehensive and systematic educational programs.

  4. Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012.

    PubMed

    Alexander, Carla S; Pappas, Gregory; Amoroso, Anthony; Lee, Mei Ching; Brown-Henley, Yvonne; Memiah, Peter; O'Neill, Joseph F; Dix, Olivia; Redfield, Robert R

    2015-09-01

    Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. This article is an historical description of how basic palliative competencies were observed to be acceptable for health workers providing outpatient HIV care and treatment during eight years of U.S. implementation of "care and support," a term coined to represent PC for persons living with HIV in RCS. The need for team building and interprofessional education is highlighted. The model is currently being tested in one U.S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U.S. health care reform. Copyright © 2015 American Academy of Hospice and Palliative Medicine. All rights reserved.

  5. Palliative Care for Hospitalized Patients With Stroke: Results From the 2010 to 2012 National Inpatient Sample.

    PubMed

    Singh, Tarvinder; Peters, Steven R; Tirschwell, David L; Creutzfeldt, Claire J

    2017-09-01

    Substantial variability exists in the use of life-prolonging treatments for patients with stroke, especially near the end of life. This study explores patterns of palliative care utilization and death in hospitalized patients with stroke across the United States. Using the 2010 to 2012 nationwide inpatient sample databases, we included all patients discharged with stroke identified by International Classification of Diseases-Ninth Revision codes. Strokes were subclassified as ischemic, intracerebral, and subarachnoid hemorrhage. We compared demographics, comorbidities, procedures, and outcomes between patients with and without a palliative care encounter (PCE) as defined by the International Classification of Diseases-Ninth Revision code V66.7. Pearson χ(2) test was used for categorical variables. Multivariate logistic regression was used to account for hospital, regional, payer, and medical severity factors to predict PCE use and death. Among 395 411 patients with stroke, PCE was used in 6.2% with an increasing trend over time (P<0.05). We found a wide range in PCE use with higher rates in patients with older age, hemorrhagic stroke types, women, and white race (all P<0.001). Smaller and for-profit hospitals saw lower rates. Overall, 9.2% of hospitalized patients with stroke died, and PCE was significantly associated with death. Length of stay in decedents was shorter for patients who received PCE. Palliative care use is increasing nationally for patients with stroke, especially in larger hospitals. Persistent disparities in PCE use and mortality exist in regards to age, sex, race, region, and hospital characteristics. Given the variations in PCE use, especially at the end of life, the use of mortality rates as a hospital quality measure is questioned. © 2017 The Authors.

  6. The role of physical medicine and rehabilitation for patients in palliative and hospice care.

    PubMed

    Downing, Robin

    2011-05-01

    Veterinary patients in palliative and hospice care have progressive and often degenerative diseases that can cause pain as well as loss of function and decreased quality of life. These patients can often benefit from the application of physical medicine and rehabilitation techniques to maximize comfort and function. Physical medicine and rehabilitation are most effective as adjuncts to pharmacologic pain management. Physical medicine and rehabilitation can decrease the doses of analgesics required to keep these patients comfortable. The blend of physical and pharmacologic medicine allows an optimum balance between maximum comfort and maximum mentation.

  7. Megestrol acetate for the palliation of anorexia in advanced, incurable cancer patients.

    PubMed

    Mateen, Farrah; Jatoi, Aminah

    2006-10-01

    Anorexia, or loss of appetite, is a troubling symptom for many patients with advanced cancer. The early observation that breast cancer patients, who were prescribed megestrol acetate as a cancer treatment, went on to increase their appetite and gain weight has given rise to a large number of clinical trials that have tested this progestational drug as a palliative agent for the cancer anorexia/weight loss syndrome. This review focuses on these trials, summarizing their findings and providing a practical approach for prescribing megestrol acetate to advanced cancer patients who suffer from the cancer anorexia/weight loss syndrome.

  8. Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer

    PubMed Central

    Sharma, Rashmi K.; Cameron, Kenzie A.; Chmiel, Joan S.; Von Roenn, Jamie H.; Szmuilowicz, Eytan; Prigerson, Holly G.; Penedo, Frank J.

    2015-01-01

    Purpose Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer. Patients and Methods Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study. Patient-level multivariable logistic regression was used to evaluate the association between race/ethnicity and IPCC. Results A total of 6,288 patients (69% non-Hispanic white, 19% African American, and 6% Hispanic) were eligible. Of these patients, 16% of whites, 22% of African Americans, and 20% of Hispanics had an IPCC (overall P < .001). Compared with whites, African Americans had a greater likelihood of receiving an IPCC (odds ratio, 1.21; 95% CI, 1.01 to 1.44), even after adjusting for insurance, hospitalizations, marital status, and illness severity. Among patients who received an IPCC, African Americans had a higher median number of days from IPCC to death compared with whites (25 v 17 days; P = .006), and were more likely than Hispanics (59% v 41%; P = .006), but not whites, to be referred to hospice. Conclusion Inpatient settings may neutralize some racial/ethnic differences in access to hospice and palliative care services; however, irrespective of race/ethnicity, rates of IPCC remain low and occur close to death. Additional research is needed to identify interventions to improve access to palliative care in the hospital for all patients with advanced cancer. PMID:26324373

  9. Strength in numbers: patient experiences of group exercise within hospice palliative care.

    PubMed

    Malcolm, Lorna; Mein, Gill; Jones, Alison; Talbot-Rice, Helena; Maddocks, Matthew; Bristowe, Katherine

    2016-12-13

    Exercise is increasingly recognized as a core component of palliative rehabilitation. The group exercise model is often adopted as a means of reaching more patients with limited resource. Despite the growth of quantitative research examining this area of practice, few qualitative studies have looked at the patient experience of participating in group exercise in a palliative setting, and most exclude patients with a non-cancer diagnosis. The aim of this study was to explore patients' experiences of participating in group exercise classes in a hospice setting. In this qualitative, phenomenological study, nine patients participating in a group exercise programme at a South London hospice completed semi-structured interviews. Participants were purposively sampled by gender, age, ethnicity and diagnosis; to include diagnoses across cancer, respiratory and neurological conditions. Transcripts were interpreted using thematic analysis. All patients reported positive experiences of participating in group exercise classes. Improvements reported in physical function had a positive effect on ability to complete activities of daily living and enhanced patient mood. Other reported psychosocial benefits included: promotion of self-management; space and opportunity for reflection; supportive relationships; sharing of information; and a deeper appreciation of patients' own abilities. This study highlights the positive experiences and value of group exercise classes to groups of people with diverse cancer and non-cancer conditions. The physical, emotional and psychosocial benefits suggest hospices and other palliative services should explore similar programmes as part of their rehabilitation services. The recognition that exercise groups can be mixed and need not be bespoke to one condition has positive cost and staff resource ramifications.

  10. Post-Acute Care Facility as a Discharge Destination for Patients in Need of Palliative Care in Brazil.

    PubMed

    Soares, Luiz Guilherme L; Japiassu, André M; Gomes, Lucia C; Pereira, Rogéria

    2017-01-01

    Patients with complex palliative care needs can experience delayed discharge, which causes an inappropriate occupancy of hospital beds. Post-acute care facilities (PACFs) have emerged as an alternative discharge destination for some of these patients. The aim of this study was to investigate the frequency of admissions and characteristics of palliative care patients discharged from hospitals to a PACF. We conducted a retrospective analysis of PACF admissions between 2014 and 2016 that were linked to hospital discharge reports and electronic health records, to gather information about hospital-to-PACF transitions. In total, 205 consecutive patients were discharged from 6 different hospitals to our PACF. Palliative care patients were involved in 32% (n = 67) of these discharges. The most common conditions were terminal cancer (n = 42, 63%), advanced dementia (n = 17, 25%), and stroke (n = 5, 8%). During acute hospital stays, patients with cancer had significant shorter lengths of stay (13 vs 99 days, P = .004), a lower use of intensive care services (2% vs 64%, P < .001) and mechanical ventilation (2% vs 40%, P < .001), when compared to noncancer patients. Approximately one-third of discharges from hospitals to a PACF involved a heterogeneous group of patients in need of palliative care. Further studies are necessary to understand the trajectory of posthospitalized patients with life-limiting illnesses and what factors influence their decision to choose a PACF as a discharge destination and place of death. We advocate that palliative care should be integrated into the portfolio of post-acute services.

  11. [Silence pact from the perspective of caretakers of palliative care patients].

    PubMed

    Cejudo López, Ángela; López López, Begoña; Duarte Rodríguez, Miguel; Crespo Serván, María Pilar; Coronado Illescas, Concepción; de la Fuente Rodríguez, Carlota

    2015-01-01

    To determine why terminally-ill patients, family caregivers and health care providers make a pact of silence about the terminal status of the patient, and to identify the attitudes, experiences and opinions of family caregivers concerning the conspiracy of silence in palliative care. A qualitative phenomenological study based on an interpretive analysis, conducted in Primary Health Care, Seville, Spain. Study dimensions: knowledge of the diagnosis and prognosis of the condition; disclosure of information; reaction to information received, feelings and approach to death; information disclosed to the patient and reasons behind partial disclosure; communication between patients, families, and health care providers. Family caregivers of patients on palliative care suspicious about a pact of silence. Family caregivers hamper professional-patient communication; use of deceit to conceal the truth; suspicion that the patient knows the truth; the clinician conceals the truth; paternalist attitudes; feelings of sadness, grief, resignation, acceptance of the disease. The pact of silence has negative effects on coping with death, quality of life in the last days of life, and mourning. Communication between patients, health care providers, and families should be improved to prevent the pact of silence, and help patients cope with death. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.

  12. Palliative care intervention in the intensive care unit: comparing outcomes among seriously ill Asian patients and those of other ethnicities.

    PubMed

    Gutierrez, Cristina; Hsu, William; Ouyang, Qin; Yao, Haijun; Pollack, Simcha; Pan, Cynthia X

    2014-01-01

    The literature describing the attitude of Asians toward palliative care in the intensive care unit (ICU) is scarce. The purpose of this study was to compare outcomes of Asians and people of other ethnicities after palliative care intervention in the ICU. A retrospective chart review was conducted of all ICU patients evaluated by palliative care; the outcomes measured were incidence of life-sustaining treatments, institution of advance care directives, and preferences for end-of-life care. The palliative care team evaluated 119 patients (46.2 percent Caucasian, 27.2 percent Asian, and 26.1 percent other ethnicities). There were no differences in demographics or clinical variables. Thirty-six percent of the Asians, 49 percent of the Caucasians, and 28.6 percent of the patients of other ethnicities (p = 0.19) had healthcare proxies. The palliative care team increased advance care directives by more than 40 percent in all groups (p < 0.001). There were no differences in the use of life-sustaining treatments or preferences for comfort measures among ethnic groups. Asians are as likely as people of other ethnicities to decide on advance care directives, life-sustaining treatments, and comfort measures after palliative care evaluation in the ICU.

  13. Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer.

    PubMed

    Sharma, Rashmi K; Cameron, Kenzie A; Chmiel, Joan S; Von Roenn, Jamie H; Szmuilowicz, Eytan; Prigerson, Holly G; Penedo, Frank J

    2015-11-10

    Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer. Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study. Patient-level multivariable logistic regression was used to evaluate the association between race/ethnicity and IPCC. A total of 6,288 patients (69% non-Hispanic white, 19% African American, and 6% Hispanic) were eligible. Of these patients, 16% of whites, 22% of African Americans, and 20% of Hispanics had an IPCC (overall P < .001). Compared with whites, African Americans had a greater likelihood of receiving an IPCC (odds ratio, 1.21; 95% CI, 1.01 to 1.44), even after adjusting for insurance, hospitalizations, marital status, and illness severity. Among patients who received an IPCC, African Americans had a higher median number of days from IPCC to death compared with whites (25 v 17 days; P = .006), and were more likely than Hispanics (59% v 41%; P = .006), but not whites, to be referred to hospice. Inpatient settings may neutralize some racial/ethnic differences in access to hospice and palliative care services; however, irrespective of race/ethnicity, rates of IPCC remain low and occur close to death. Additional research is needed to identify interventions to improve access to palliative care in the hospital for all patients with advanced cancer. © 2015 by American Society of Clinical Oncology.

  14. The role of dentistry in palliative care of the head and neck cancer patient.

    PubMed

    Paunovich, E D; Aubertin, M A; Saunders, M J; Prange, M

    2000-06-01

    Although palliative care for the terminally ill is based on a multidimensional philosophy to provide whole-person comfort care while maintaining optimal function, it does not usually include dentistry in its team approach. Dentists can have a significant role in the care of these patients by providing total, active comfort care of the oral cavity. The function of the oral cavity is essential to the patient's ability to thrive. Therefore, alleviation of pain and prevention of infection in the oral cavity should be a priority in providing total, active comfort for the patient. The oral problems experienced by the hospice head and neck patient clearly affect the quality of his or her remaining life. Through routine assessments and interventions by a dentist on the palliative care team (Figure 4), comfort care for the patient may be improved by the maintenance of oral hygiene and procedures to hydrate the oral mucosa. In addition, routine dental assessments may identify dental disease and facilitate dental interventions for caries, periodontal disease, oral mucosal problems or prosthetic needs. Attention to such detail may reduce not only the microbial load of the mouth but the risk for pain and oral infection as well. This multidisciplinary approach to palliative care, including a dentist, may reduce the oral debilities that influence the patient's ability to speak, eat or swallow. Not only does maintenance of oral health have impact on the quality of life, which is already challenged by the disease, but it also aids in the ability of patients to thrive for whatever precious time is left to them.

  15. The practice of palliative care from the perspective of patients and carers.

    PubMed

    Sampson, Cathy; Finlay, Ilora; Byrne, Anthony; Snow, Veronica; Nelson, Annmarie

    2014-09-01

    The meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers. Thematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care. The emotional experience of care is the most significant aspect documented by patients and carers. It refers to the process of care in key domains of respect, renewal, refuge and restorative care. Patients and carers described care as either enabling or directly provided. The emotional experience of care was not confined to psychosocial need and constituted a core practice drawing on professional expertise and interpersonal skills, some of which may be taken for granted by staff themselves. The emotional experience of care is examined as a practice rather than a topic, acknowledging that patients and carers documented the performance of care and the resulting impact in a variety of situations. The emotional experience of care comprises key aspects of contextual care facilitating autonomy and connectedness. It is embedded in relationships mediated by communication and tenor of care. The perspective of patients and carers places the emotional experience of palliative care centrally. This has implications for future service evaluation and the incorporation of this skill-based outcome alongside more traditional outcome measures such as the amelioration of physical symptoms. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  16. Palliative care and neurology

    PubMed Central

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

    2014-01-01

    Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

  17. Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results

    PubMed Central

    Teruel, José L.; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando

    2015-01-01

    Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams. PMID:27417813

  18. Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results.

    PubMed

    Teruel, José L; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando

    2015-10-28

    Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m²). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital's emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams.

  19. Gender differences in prevalence of depression among patients receiving palliative care: the role of dependency.

    PubMed

    Hayes, Richard D; Lee, William; Rayner, Lauren; Price, Annabel; Monroe, Barbara; Hansford, Penny; Sykes, Nigel; Hotopf, Matthew

    2012-07-01

    in community studies the prevalence of depression is higher in women than men; however, in palliative care settings this relationship is usually less strong, absent or reversed. to identify reasons for excess depression among men receiving palliative care. cross-sectional study. we interviewed 300 patients recruited from a large hospice in South East London. Depression was measured using the Primary Care Evaluation of Mental Disorder. the higher prevalence of depression among men was not explained by a higher prevalence of particular types of cancer nor confounding by other covariates. Possible effect modifiers were examined. Depending on others for help with basic tasks (eating, dressing, washing or using the toilet) was a risk factor for depression in men only, with 37.8% of dependent men being depressed compared to 2.4% of similarly affected women (OR = 24.3, 3.1-193.2, p = 0.003). We observed a dose-response effect between the level of dependency and depression in men (p for trend = 0.01). depending on others for help with basic tasks appears to contribute to the burden of depression among men with terminal illness. This gender-specific association may explain why the usual gender differences in depression prevalence are not observed in palliative care.

  20. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers.

    PubMed

    Ventura, Adriana D; Burney, Susan; Brooker, Joanne; Fletcher, Jane; Ricciardelli, Lina

    2014-05-01

    There have been many studies on the unmet needs of palliative care patients and carers from the perspective of bereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients and their carers have received little research attention. As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers. The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. The focus therefore should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously.

  1. Misunderstandings about prognosis: an approach for palliative care consultants when the patient does not seem to understand what was said.

    PubMed

    Jacobsen, Juliet; Thomas, Jane deLima; Jackson, Vicki A

    2013-01-01

    Called in after discussions about prognosis between referring clinicians and patients, palliative care consultants sometimes find that the patient does not seem to understand what the referring clinician believes he or she explained. However, holding a more explicit discussion about prognosis may compromise the palliative care clinician's rapport with both the patient and the referring clinician. We therefore propose a two-part approach to explore apparent prognostic misunderstandings: first, generate a differential diagnosis for why the patient and referring clinician have different reports of what was said, and second, cultivate a partnership with the referring clinician to provide a unified patient care plan.

  2. Shared decision making about palliative chemotherapy: A qualitative observation of talk about patients' preferences.

    PubMed

    Henselmans, Inge; Van Laarhoven, Hanneke Wm; Van der Vloodt, Jane; De Haes, Hanneke Cjm; Smets, Ellen Ma

    2017-07-01

    Particularly at the end of life, treatment decisions should be shared and incorporate patients' preferences. This study examines elaboration and preference construction. To examine the values, appraisals and preferences that patients express, as well as the oncologists' communicative behaviour that facilitates these expressions in consultations on palliative chemotherapy. Verbatim transcripts of audio-recorded consultations ( n = 60) were analysed in MAXqda10 software. Two independent coders identified and categorised patients' preference-related utterances and oncologists' utterances, preceding and following such expressions. Cancer patients ( n = 41) with a median life expectancy <1 year and oncologists ( n = 13) meeting with them in either initial or evaluative follow-up consultations. Most frequent were patients' expressions of treatment preferences (65% of consultations), often the simple wish to have treatment. Expressions of underlying values (48%) and appraisals of treatment aspects (50%) were less common. Most preference-related utterances concerned single statements (59%); in 51% of the consultations, true dialogue was observed. Preference-related utterances were least common in follow-up consultations concerning stable disease or response. Preference-related fragments were patient-initiated (42%), oncologist-facilitated (28%) or oncologist-invited (30%). Oncologist responses likely to trigger more preference-related talk were showing empathy, checking and probe questioning. Likely to reduce space were providing information, personally agreeing and neutral responses. Elaboration and joint preference construction is not standard practice in consultations on palliative chemotherapy. Oncologists may benefit from realising this and training skills that support this key step of shared decision making. Also, repeated shared decision making throughout the course of palliative chemotherapy should be stimulated.

  3. Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

    PubMed

    Hudson, Peter L; Girgis, Afaf; Mitchell, Geoffrey K; Philip, Jenny; Parker, Deborah; Currow, David; Liew, Danny; Thomas, Kristina; Le, Brian; Moran, Juli; Brand, Caroline

    2015-12-10

    Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice. Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4. The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease

  4. Palliative care in pediatric hematological oncology patients: experience of a tertiary hospital

    PubMed Central

    Valadares, Maria Thereza Macedo; Mota, Joaquim Antônio César; de Oliveira, Benigna Maria

    2014-01-01

    Objective To evaluate the approach to palliative care for hematological oncology patients in the pediatric ward of a tertiary hospital. Methods This was a retrospective, descriptive study of 29 hematological oncology patients who died between 2009 and 2011. Data regarding the approach and prevalence of pain, prevalence of other symptoms, multidisciplinary team participation, communication between staff and family and limited invasive therapy were collected from the medical records. Results Twenty-seven (93.1%) patients displayed disease progression unresponsive to curative treatment. The median age at death was ten years old. Pain was the most prevalent symptom with all patients who reported pain receiving analgesic medications. The majority took weak (55.2%) and/or strong (65.5%) opioids. The patients were followed by pediatricians and a pediatric hematologist/oncologist. Participation of other professionals was also documented: 86.2% were followed by social services and 69% by psychologists, among others. There were explicit descriptions of limitation of invasive therapy in the medical records of 26 patients who died with disease progression. All these decisions were shared with the families. Conclusion Although the hospital where this study was conducted does not have a specialized team in pediatric palliative care, it meets all the requirements for developing a specific program. The importance of approaching pain and other prevalent symptoms in children with cancer involving a comprehensive multidisciplinary team is evident. Discussions were had with most of the families on limiting invasive therapy, but no record of a well-defined and coordinated treatment plan for palliative care was found. PMID:25453649

  5. Palliative radiation therapy in patients with metastasized pancreatic cancer - description of a rare patient group

    PubMed Central

    2014-01-01

    Background Pancreatic cancer (PAC) patients experience a high rate of locoregional recurrences and distant metastasis finally leading to their demise even after curatively-intended multidisciplinary treatment approaches including surgery, chemotherapy and radiotherapy. However, clinical reports on bone and brain metastases in PAC patients are extremely rare and thus timing and dose description are not well defined. Our work therefore summarizes a mono-institutional experience on the use of radiotherapy (RT) for PAC patients with metastatic disease with the aim of identifying overall survival and treatment response in this rarely reported patient group. Method Forty-four PAC patients with 66 metastatic lesions were treated with palliative radiotherapy (RT). Thirty-three patients (48 lesions), 7 patients (11 lesions) and 5 patients (7 lesions) with bone, liver and brain metastases analyzed respectively were analyzed; one patient had both bone and cerebral metastases and was treated for the lesions, thus including him in both subgroups. Indications for RT were pain, neurological impairment, risk of pathological fracture or imminent danger for development of any of these conditions in case of tumor progression. Median age was 64 years (range 38 to 78 years) and there were 27 male (61%) and 17 (39%) female patients. Analyses of overall survival (OS) and local control were performed. OS was calculated from the first day of RT. Results Median overall survival (mOS) of all patients after start of RT was 4.2 months. Survival rates after 1, 3 and 6 months were 79.3%, 55.3% and 30.3% respectively. Patients presenting with bone metastasis had a mOS of 3.1 months and after 1, 3 and 6 months, survival rates were 75.3%, 46.5% and 19.9% respectively. Symptomatic response to therapy was recorded in 85% of all evaluated patients with bone metastasis. Patients undergoing radiosurgery because of liver metastasis were locally controlled in all but one patient after a median follow

  6. Help is just a phone call away: after-hours support for palliative care patients wishing to die at home.

    PubMed

    Baird-Bower, Debbie; Roach, Julie; Andrews, Morven; Onslow, Fiona; Curnin, Emma

    2016-06-01

    The 24-hour support for palliative patients is the gold standard of health care in Australia. However, in the state of Tasmania after-hours telephone support was spatially fragmented and inequitable. In 2014, hospice@HOME, a pilot programme introduced in Tasmania in that year, implemented a state-wide after-hours palliative care support service--1800HOSPICE--offering 24-hour support, 7 days a week for palliative patients, caregivers and the public. Six months of after-hours call logs in combination with additional patient data, were analysed to evaluate the use and wider implications of a state-wide after-hours palliative care support number. Family and caregivers mainly used the after-hours support to request changes to support services (25.1%), report changes in patients' overall condition (23.6%) and request acute medical assistance (16.2%). Through the use of the after-hours services by all individuals involved in the care, end-of-life patients were able to reduce ambulance contact and emergency department admission, and thereby increase their likelihood of dying at home (for patients whose preference was to die at home). Overall, 24-hour palliative care telephone support was found to be a valuable tool for all individuals involved in the care of end-of-life patients.

  7. [The Role of Certified Nurse in Palliative Care to Promote the Discharge Support and Regional Cooperation for Cancer Patients].

    PubMed

    Matsumoto, Mina; Abe, Yasushi; Tanaka, Yukie; Ino, Akiko; Yamazaki, Yoshie

    2015-12-01

    The objective of this study is to understand the issues and solutions considered by certified nurses(CN)in palliative care (hereinafter referred to as"palliative care CN)regarding discharge support and regional cooperation for cancer patients, and to discover the roles and responsibilities of palliative care CN. Data obtained from training sessions for 22 palliative care CNs was reconfigured and analyzed. As a result, problems related to discharge support and regional cooperation for cancer patients were classified into 13 categories and 3 core categories. The following roles for palliative care CN were proposed to promote discharge support and regional cooperation for cancer patients: (1) Inter-professional sharing of knowledge about patients and their families to reconcile the intentions of the patient and family members with predictions of progression of the illness; (2) Enable hospital nurses to obtain information about patients after discharge in order to establish a clear image for medical treatment; and(3) Support for ward nurses regarding cooperation to alleviate symptoms and offer medical care to patients who are highly dependent on medical care, and to become a point of contact for cooperation with visiting nurses.

  8. Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records.

    PubMed

    Strömgren, A S; Groenvold, M; Pedersen, L; Olsen, A K; Sjogren, P

    2002-04-01

    To elucidate which symptoms or problems to measure when evaluating palliative care, we assessed the content validity of selected patient self-assessment questionnaires used to evaluate palliative care: the European Organization for Research and Treatment of Cancer-Quality of Life-Core 30 (EORTC QLQ-C30), the Edmonton Symptom Assessment System (ESAS), the Palliative Care Outcome Scale (POS), the McGill Quality of Life Questionnaire (MQOL) and the Memorial Symptom Assessment Scale (MSAS). The content of the questionnaires was compared against the symptoms and problems noted in the medical records of 171 consecutive cancer patients on their first admission to a department of palliative medicine. From the records, 63 different symptoms were listed. Two questionnaires covered almost all of the prevalent symptoms/problems: the EORTC QLQ-C30 covered 10 and the MSAS 11 of the 12 most frequent problems. Researchers selecting instruments for evaluating palliative care may use the present study and other reviews to examine to what degree a given selection of instruments cover the symptoms/problems targeted by palliative care physicians.

  9. Music thanatology: prescriptive harp music as palliative care for the dying patient.

    PubMed

    Freeman, Lindsay; Caserta, Michael; Lund, Dale; Rossa, Shirley; Dowdy, Ann; Partenheimer, Andrea

    2006-01-01

    Music thanatology represents an emerging area in which the raw materials of music, usually harp and/or voice, assist and comfort the dying patient. During prescriptive "music vigils, " the clinician-musician carefully observes physiological changes, cues, and breathing patterns, thereby synchronizing the music to reflect or support the patient's physiology and overall condition. Using data collected from 65 patients, this study was designed to assess the effectiveness of prescriptive harp music on selected palliative care outcomes using a sample of de-identified data forms from past music vigils. Patients were administered a 25- to 95-minute intervention of prescriptive harp music. Data collected included vital signs and observational indicators before (Ti) and after (T2) the vigil. Patients were more likely to experience decreased levels of agitation and wakefulness while also breathing more slowly and deeply with less effort at the conclusion of the music vigil. Results from this study suggest that a prescriptive vigil conducted by a trained music thanatologist could provide an effective form of palliative care for dying patients.

  10. Admittance to specialized palliative care (SPC) of patients with an assessed need: a study from the Danish palliative care database (DPD).

    PubMed

    Adsersen, Mathilde; Thygesen, Lau Caspar; Neergaard, Mette Asbjoern; Bonde Jensen, Anders; Sjøgren, Per; Damkier, Anette; Groenvold, Mogens

    2017-09-01

    Admittance to specialized palliative care (SPC) has been discussed in the literature, but previous studies examined exclusively those admitted, not those with an assessed need for SPC but not admitted. The aim was to investigate whether admittance to SPC for referred adult patients with cancer was related to sex, age, diagnosis, geographic region or referral unit. A register-based study with data from the Danish Palliative Care Database (DPD). From DPD we identified all adult patients with cancer, who died in 2010-2012 and who were referred to and assessed to have a need for SPC (N = 21,597).The associations were investigated using logistic regression models, which also evaluated whether time from referral to death influenced the associations. In the adjusted analysis, we found that admittance was higher for younger patients [e.g., 50-59 versus 80 + years: odds ratio (OR) = 2.03; 1.78-2.33]. There was lower odds of admittance for patients with hematological malignancies and patients from two regions: Capital Region of Denmark and Region of Southern Denmark. Lower admittance among men and patients referred from hospital departments was explained by later referral. In this first nationwide study of admittance to SPC among patients with a SPC need, we found difference in admittance according to age, diagnosis and region. This indicates that prioritization of the limited resources means that certain subgroups with a documented need have reduced likelihood of admission to SPC.

  11. Music therapy reduces pain in palliative care patients: a randomized controlled trial.

    PubMed

    Gutgsell, Kathy Jo; Schluchter, Mark; Margevicius, Seunghee; DeGolia, Peter A; McLaughlin, Beth; Harris, Mariel; Mecklenburg, Janice; Wiencek, Clareen

    2013-05-01

    Treatment of pain in palliative care patients is challenging. Adjunctive methods of pain management are desirable. Music therapy offers a nonpharmacologic and safe alternative. To determine the efficacy of a single music therapy session to reduce pain in palliative care patients. Two hundred inpatients at University Hospitals Case Medical Center were enrolled in the study from 2009 to 2011. Patients were randomly assigned to one of two groups: standard care alone (medical and nursing care that included scheduled analgesics) or standard care with music therapy. A clinical nurse specialist administered pre- and post-tests to assess the level of pain using a numeric rating scale as the primary outcome, and the Face, Legs, Activity, Cry, Consolability Scale and the Functional Pain Scale as secondary outcomes. The intervention incorporated music therapist-guided autogenic relaxation and live music. A significantly greater decrease in numeric rating scale pain scores was seen in the music therapy group (difference in means [95% CI] -1.4 [-2.0, -0.8]; P<0.0001). Mean changes in Face, Legs, Activity, Cry, Consolability scores did not differ between study groups (mean difference -0.3, [95% CI] -0.8, 0.1; P>0.05). Mean change in Functional Pain Scale scores was significantly greater in the music therapy group (difference in means -0.5 [95% CI] -0.8, 0.3; P<0.0001) [corrected]: A single music therapy intervention incorporating therapist-guided autogenic relaxation and live music was effective in lowering pain in palliative care patients. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  12. Use of Palliative Radiotherapy Among Patients With Metastatic Non-Small-Cell Lung Cancer

    SciTech Connect

    Hayman, James A. Abrahamse, Paul H.; Lakhani, Indu; Earle, Craig C.; Katz, Steven J.

    2007-11-15

    Purpose: Radiotherapy (RT) is known to effectively palliate many symptoms of patients with metastatic non-small-cell lung cancer (NSCLC). Anecdotally, RT is believed to be commonly used in this setting, but limited population-based data are available. The objective of this study was to examine the utilization patterns of palliative RT among elderly patients with Stage IV NSCLC and, in particular, to identify factors associated with its use. Methods and Materials: A retrospective population-based cohort study was performed using linked Surveillance, Epidemiology and End Results (SEER)-Medicare data to identify 11,084 Medicare beneficiaries aged {>=}65 years who presented with Stage IV NSCLC in the 11 SEER regions between 1991 and 1996. The primary outcome was receipt of RT. Logistic regression analysis was used to identify factors associated with receipt of RT. Results: A total of 58% of these patients received RT, with its use decreasing over time (p = 0.01). Increasing age was negatively associated with receipt of treatment (p <0.001), as was increasing comorbidities (p <0.001). Factors positively associated with the receipt of RT included income (p = 0.001), hospitalization (p <0.001), and treatment with chemotherapy (p <0.001). Although the use varied across the SEER regions (p = 0.001), gender, race/ethnicity, and distance to the nearest RT facility were not associated with treatment. Conclusions: Elderly patients with metastatic NSCLC frequently receive palliative RT, but its use varies, especially with age and receipt of chemotherapy. Additional research is needed to determine whether this variability reflects good quality care.

  13. Predictive model of complexity in early palliative care: a cohort of advanced cancer patients (PALCOM study).

    PubMed

    Tuca, Albert; Gómez-Martínez, Mónica; Prat, Aleix

    2017-08-06

    Model of early palliative care (PC) integrated in oncology is based on shared care from the diagnosis to the end of life and is mainly focused on patients with greater complexity. However, there is no definition or tools to evaluate PC complexity. The objectives of the study were to identify the factors influencing level determination of complexity, propose predictive models, and build a complexity scale of PC. We performed a prospective, observational, multicenter study in a cohort of advanced cancer patients with an estimated prognosis ≤ 6 months. An ad hoc structured evaluation including socio-demographic and clinical data, symptom burden, functional and cognitive status, psychosocial problems, and existential-ethic dilemmas was recorded systematically. According to this multidimensional evaluation, investigator classified patients as high, medium, or low palliative complexity, associated to need of basic or specialized PC. Logistic regression was used to identify the variables influencing determination of level of PC complexity and explore predictive models. We included 324 patients; 41% were classified as having high PC complexity and 42.9% as medium, both levels being associated with specialized PC. Variables influencing determination of PC complexity were as follows: high symptom burden (OR 3.19 95%CI: 1.72-6.17), difficult pain (OR 2.81 95%CI:1.64-4.9), functional status (OR 0.99 95%CI:0.98-0.9), and social-ethical existential risk factors (OR 3.11 95%CI:1.73-5.77). Logistic analysis of variables allowed construct a complexity model and structured scales (PALCOM 1 and 2) with high predictive value (AUC ROC 76%). This study provides a new model and tools to assess complexity in palliative care, which may be very useful to manage referral to specialized PC services, and agree intensity of their intervention in a model of early-shared care integrated in oncology.

  14. [Specifics of Analgesia in Palliative Care Patients at Home].

    PubMed

    Pautex, Sophie

    2015-02-25

    Pain management at home for a patient, suffering from one or more advanced progressive diseases, goes beyond the prescription of an opioid. Apart from the importance of finding the most suitable analgesic drug (controlled pain with least possible adverse effects), three important dimensions will be addressed: interprofessionnal care (shared care goals, evaluation, monitoring of pain and other symptoms; physiotherapy, etc.) information, education and support for patients and relatives in particular on the use of opioids, and finally the importance of anticipation. This includes for example the requirement of breakthrough pain treatment in case of pain exacerbation or the definition of the place of hospitalization in case of worsening general condition or of death.

  15. Predictors of psychological distress in advanced cancer patients under palliative treatments.

    PubMed

    Diaz-Frutos, D; Baca-Garcia, E; García-Foncillas, J; López-Castroman, J

    2016-07-01

    This work aims to investigate the factors associated with psychological distress in advanced cancer patients under palliative treatment. We comprehensively assessed the demographic, psychosocial and health factors of 158 advanced cancer patients. Patients with high and low distress, according to the Hospital Anxiety and Depression Scale, were compared. A regression analysis was built to identify the best predictors of distress. Patients with high psychological distress (81%) were more likely to have lung cancer, suicidal ideation, hopelessness, low quality of life and poor body image than those without. In the multivariate model, only poor emotional functioning (OR = .89; 95% CI = .83-.95; p ≤ .001), hopelessness (OR = .86; 95% CI = .78-.94; p ≤ .001) and body image distortions (OR = .77; 95% CI = .68-.85; p = .005) were retained. High levels of hopelessness, impaired emotional functioning and body image distortions are the main factors associated with psychological distress in patients with advanced cancer. Potential interventions to modify these factors in palliative units are discussed.

  16. Inadequate pain management in cancer patients attending an outpatient palliative radiotherapy clinic.

    PubMed

    Vuong, Sherlyn; Pulenzas, Natalie; DeAngelis, Carlo; Torabi, Sarah; Ahrari, Soha; Tsao, May; Danjoux, Cyril; Barnes, Toni; Chow, Edward

    2016-02-01

    The aim of this study is to assess the prevalence of undertreated cancer pain in an outpatient palliative radiotherapy clinic using the Pain Management Index (PMI). A retrospective analysis of a prospective database to assess pain management was done on patients with cancer pain enrolled from January 2009 to March 2015 using recorded pain intensity (0-10) and baseline pain medications. The pain intensities were categorized into no pain (0), mild pain (1), moderate pain (2), and severe pain (3), and an analgesic score was assigned to the most potent pain medication the patient was taking during the time of data collection. "0" was assigned to no analgesics, "1" to non-opioids, "2" to weak opioids, and "3" for strong opioids based on the WHO guidelines. The PMI was calculated for each patient by subtracting the pain score from the analgesic score. A negative value indicated undertreatment, and a value of 0 or greater corresponded to adequate pain management. Three hundred fifty-four patients were included in the study. The incidence of inadequate pain management was 33.3 %, similar to that reported in our previous studies. Additionally, 106 patients were taking strong opioids and reporting severe pain despite being the PMI reporting adequately treated. The rate of undertreatment is similar to that reported in past studies; however, the rates have shown a slight increase in our palliative radiotherapy clinic since the last assessment. Inadequate management of cancer pain continues to be a problem.

  17. A hypnotherapy intervention for the treatment of anxiety in patients with cancer receiving palliative care.

    PubMed

    Plaskota, Marek; Lucas, Caroline; Evans, Rosie; Cook, Karen; Pizzoferro, Kathleen; Saini, Treena

    2012-02-01

    This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population.

  18. The Project ENABLE II Randomized Controlled Trial to Improve Palliative Care for Patients with Advanced Cancer

    PubMed Central

    Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Balan, Stefan; Brokaw, Frances C.; Seville, Janette; Hull, Jay G.; Li, Zhongze; Tosteson, Tor; Byock, Ira R.; Ahles, Tim A.

    2013-01-01

    Context There are few randomized controlled trials of the effectiveness of palliative care. Objective To determine the effect of a palliative care intervention on quality of life (QOL), symptom intensity, mood, and resource utilization. Design, Setting, and Participants Randomized controlled trial (November 2003-May 2008) of 322 patients with advanced cancer and an identified caregiver in a rural, NCI-designated comprehensive cancer center (the Norris Cotton Cancer Center, Lebanon, NH) and affiliated outreach clinics and Veteran’s Affairs Medical Center (White River Junction, VT). Intervention A multi-component, psycho-educational, palliative care intervention (Project ENABLE) conducted by an advanced practice nurse consisting of 4 weekly educational sessions and monthly follow-up until death or study completion. Main Outcome Measures (1) The Functional Assessment of Chronic Illness Therapy-Palliative (range: 0 to 184; higher scores indicate better QOL), (2) Edmonton Symptom Assessment Scale (range: 0 to 900; higher scores indicate greater symptom intensity), (3) Center for Epidemiological Studies-Depression (range: 0 to 60; higher scores indicate more depressive symptoms), completed at baseline, 1 month and every 3 months until death or study completion, (4) days in hospital, intensive care unit (ICU), and emergency department visits recorded in the medical record. Results 322 participants with gastrointestinal (41%), lung (36%), genitourinary (12%), and breast (10%) cancer were randomized. Estimated treatment effects (intervention minus usual care) for all subjects were 4.6 (P = .02) for QOL, −27.8 (P = .06) for symptom intensity, and −1.8 (P = .02) for depressed mood. Estimated average treatment effects in the sample of participants who died during the study were 8.6 (P = .02) for QOL, −24.2 (P = .24) for symptom intensity, and −2.7 (P = .03) for depressed mood. Days in hospital, intensive care unit, and emergency department visits were not different

  19. Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians' perspectives.

    PubMed

    Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin H N

    2017-08-28

    Patients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy. The objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care. Qualitative semi-structured interviews were conducted with consultant oncologists (n = 11) and palliative medicine doctors (n = 7) working in oncology centres and palliative care units across Australia. We found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions. The ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care

  20. [Cannabinoids in the treatment of the cachexia-anorexia syndrome in palliative care patients].

    PubMed

    Nauck, F; Klaschik, E

    2004-06-01

    Loss of appetite and cachexia are frequent symptoms in palliative care patients. However, therapeutic regimens often prove ineffective, and the quality of life of many patients is significantly impaired by these symptoms. Causes and pathophysiology of anorexia and cachexia are complex and must be identified and treated. Symptomatic pharmacological therapy aims at metabolic, neuroendocrinological and catabolic changes. Prokinetic drugs, corticosteroids and gestagenes are used for symptomatic therapy. Recently, the use of cannabinoids for treatment of loss of appetite and cachexia has become the focus of interest. In cancer patients, cannabinoids proved more effective than placebo but less than gestagenes. Compared to placebo, higher efficacy of cannabinoids could be demonstrated in patients with AIDS as well as in patients with Morbus Alzheimer. However, side effects, such as dizziness, tiredness and daze led to discontinuation of the cannabinoid therapy in some patients.

  1. [Family Focused Grief Therapy - A Suitable Model for the Palliative Care of Cancer Patients and their Families?].

    PubMed

    Weißflog, Gregor; Mehnert, Anja

    2015-11-01

    Loss is a universal human experience. Within the context of cancer and especially in the palliative care of oncological patients, anticipated and real losses and their management play a crucial role. A high proportion of patients and family members develop a treatment requiring psychiatric comorbidity (for both groups between 20 and 30%, mainly adjustment and anxiety disorders and depression). Approximately 15% of the bereaved persons suffer from complicated grief after the death of their relative. Within the early palliative care, the implementation of the Family Focused Grief Therapy (FFGT) has the potential to reduce psychological distress incl. mental comorbidities in patients and their relatives. Simultaneously, the incidence of the prolonged grief disorder in bereaved persons could be diminished (after the death of their relative). Thus, the FFGT can make a substantial contribution in order to improve the palliative care of cancer patients and their bereaved persons. © Georg Thieme Verlag KG Stuttgart · New York.

  2. Development and Psychometric Assessment of a Spirituality Questionnaire for Indian Palliative Care Patients

    PubMed Central

    Bhatnagar, Sushma; Noble, Simon; Chaturvedi, Santosh K; Gielen, Joris

    2016-01-01

    Introduction: There are only a few studies on spirituality among palliative care patients in India. This gap in research may be caused by the absence of relevant questionnaires and scales specifically designed for Indian palliative care populations. In this study, we describe the development of such a questionnaire and explain its psychometric characteristics. Methods: We designed a questionnaire on the basis of a systematic review of the literature. After a review of the questionnaire by specialists and a subsequent pilot study, the questionnaire was amended. The final questionnaire consisted of a list of 36 spirituality items. It was administered to a sample of 300 cancer patients attending the pain clinic of a tertiary hospital in New Delhi. Results: A factor analysis led to four factors explaining 54.6% of variance: Shifting moral and religious values (Factor 1), support from religious relationship (Factor 2), existential blame (Factor 3), and spiritual trust (Factor 4). The skewness and kurtosis for Factors 1, 3, and 4 were within a tolerable range for assuming a normal distribution, but Factor 2 was skewed. The alphas showed that the four factors have an acceptable internal consistency. Statistically significant associations were observed for age and Factor 3 (P = 0.004), gender and Factor 4 (P = 0.014), marital status and Factors 3 (P = 0.002) and 4 (P = 0.001), educational level and Factors 3 (P < 0.001) and 4 (P < 0.001), and pain scores and Factors 1 (P < 0.001), 2 (P < 0.001), and 3 (P = 0.001). Conclusion: The questionnaire offers promising prospects for the study of spirituality among palliative care patients in India. PMID:26962275

  3. Images of god in relation to coping strategies of palliative cancer patients.

    PubMed

    van Laarhoven, Hanneke W M; Schilderman, Johannes; Vissers, Kris C; Verhagen, Constans A H H V M; Prins, Judith

    2010-10-01

    Religious coping is important for end-of-life treatment preferences, advance care planning, adjustment to stress, and quality of life. The currently available religious coping instruments draw on a religious and spiritual background that presupposes a very specific image of God, namely God as someone who personally interacts with people. However, according to empirical research, people may have various images of God that may or may not exist simultaneously. It is unknown whether one's belief in a specific image of God is related to the way one copes with a life-threatening disease. To examine the relation between adherence to a personal, a nonpersonal, and/or an unknowable image of God and coping strategies in a group of Dutch palliative cancer patients who were no longer receiving antitumor treatments. In total, 68 palliative care patients completed and returned the questionnaires on Images of God and the COPE-Easy. In the regression analysis, a nonpersonal image of God was a significant positive predictor for the coping strategies seeking advice and information (β=0.339, P<0.01), seeking moral support (β=0.262, P<0.05), and denial (β=0.26, P<0.05), and a negative predictor for the coping strategy humor (β=-0.483, P<0.01). A personal image of God was a significant positive predictor for the coping strategy turning to religion (β=0.608, P<0.01). Age was the most important sociodemographic predictor for coping and had negative predictive value for seeking advice and information (β=-0.268, P<0.05) and seeking moral support (β=-0.247, P<0.05). A nonpersonal image of God is a more relevant predictor for different coping strategies in Dutch palliative cancer patients than a personal or an unknowable image of God. Copyright © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  4. All patient refined-diagnostic related group and case mix index in acute care palliative medicine.

    PubMed

    Lagman, Ruth L; Walsh, Declan; Davis, Mellar P; Young, Brett

    2007-03-01

    The All Patient Refined-Diagnostic Related Group (APR-DRG) is a modification of the traditional DRG that adds four classes of illness severity and four classes of mortality risk. The APR-DRG is a more accurate assessment of the complexity of care. When individuals with advanced illness are admitted to an acute inpatient palliative medicine unit, there may be a perception that they receive less intense acute care. Most of these patients, however, are multisymptomatic, have several comorbidities, and are older. For all patients admitted to the unit, a guide was followed by staff physicians to document clinical information that included the site(s) of malignancy, site(s) of metastases, disease complications, disease-related symptoms, and comorbidities. We then prospectively compared DRGs, APR-DRGs, and case mix index (CMI) from January 1-June 30, 2003, and February 1-July 31,2004, before and after the use of the guide. The overall mean severity of illness (ASOI) increased by 25% (P < 0.05). The mean CMI increased by 12% (P < 0.05). The average length of stay over the same period increased slightly from 8.97 to 9.56 days. Systematic documentation of clinical findings using a specific tool for patients admitted to an acute inpatient palliative medicine unit based on APR-DRG classifications captured a higher severity of illness and may better reflect resource utilization.

  5. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care.

    PubMed

    Chochinov, Harvey Max; Hassard, Thomas; McClement, Susan; Hack, Thomas; Kristjanson, Linda J; Harlos, Mike; Sinclair, Shane; Murray, Alison

    2008-12-01

    Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbach's coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.

  6. Art therapy among palliative cancer patients: Aesthetic dimensions and impacts on symptoms.

    PubMed

    Lefèvre, Cédric; Ledoux, Mathilde; Filbet, Marilène

    2016-08-01

    This study aimed to explore whether aesthetic beauty and the pleasure that results from artistic activity can contribute to a reduction in the symptoms experienced by palliative care patients, and to improve the effectiveness of art therapy sessions. A self-assessment of six symptoms (pain, anxiety, ill-being, tiredness, sadness, and depression) adapted from the Edmonton Symptom Assessment System (ESAS) was completed by patients before and after a one-hour art therapy session. This assessment was completed after the session with a self-assessment of aesthetic feeling. A correlation analysis was then performed. From July of 2012 to December of 2013, 28 patients took part in 63 art therapy sessions. On the whole, these sessions reduced the global distress of patients by 47% (p < 0.0001). There was a significant reduction in all the symptoms studied; pain (p = 0.003), anxiety (p < 0.0001), ill-being (p < 0.0001), tiredness (p < 0.0001), sadness (p < 0.0001), and depression (p < 0.0001). A study of the significant correlations (0.35 < rs < 0.52, p < 0.05) indicated that technical satisfaction, aesthetic beauty, and pleasure are all involved to varying degrees in reduction of symptoms. Our findings confirm the benefits of art therapy in reducing distress within the palliative context. We also make suggestions for the future direction and improvement of these sessions.

  7. [Non-invasive ventilation improves comfort in pediatric palliative care patients].

    PubMed

    Bosch-Alcaraz, A

    2014-01-01

    To analyze the appropriate use of non-invasive ventilation and its contribution to improving comfort in pediatric palliative care patients. This is a descriptive cross-sectional study comprising 55 palliative care patients from San Juan de Dios Hospital in Barcelona. The effectiveness was evaluated using a register of socio-demographic, clinical-ventilatory and oxymetric parameters, the comfort and dyspnea's grade using Silverman Anderson scale, and pain level using pediatric scales. The effectiveness of the technique was proved by a decreased heart rate (133.53±25.8 vs. 111.04±23.1; p<0.0001), respiratory rate (35.02±12.9 vs. 25.63±5.7; p<0.0001) and an increase of partial oxygen saturation (95.7±2.9 vs. 96.87±7.2; p<0.0001) and partial oxygen saturation/fraction of inspired oxygen ratio (297.12±113.4 vs. 336.97±100.7; p<0.0001). Dyspnea and pain levels improved in 100% of the patients. The therapy was effective and the comfort improved in 100% of the patients. Copyright © 2013 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

  8. Distress Due to Prognostic Uncertainty in Palliative Care: Frequency, Distribution, and Outcomes among Hospitalized Patients with Advanced Cancer.

    PubMed

    Gramling, Robert; Stanek, Susan; Han, Paul K J; Duberstein, Paul; Quill, Tim E; Temel, Jennifer S; Alexander, Stewart C; Anderson, Wendy G; Ladwig, Susan; Norton, Sally A

    2017-09-18

    Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Observational cohort study. Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = < 0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change = 1.1; 95% confidence interval = 0.2, 2.0). Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.

  9. A laparoscopic approach is associated with a decreased incidence of SSI in patients undergoing palliative surgery for malignant bowel obstruction.

    PubMed

    Maeda, Yoshiaki; Shinohara, Toshiki; Katayama, Tomonari; Minagawa, Nozomi; Sunahara, Masao; Nagatsu, Akihisa; Futakawa, Noriaki; Hamada, Tomonori

    2017-06-01

    Several authors have reported on the utility of a laparoscopic approach for the palliation of malignant bowel obstruction (MBO); however, the advantages of laparoscopic surgery for MBO have not yet been confirmed. We retrospectively reviewed the medical records of patients who underwent palliative surgery for MBO between 2007 and 2015. Laparoscopic procedures have been performed when technically possible since 2014. Successful palliation was defined as the ability to tolerate solid food (TSF) for at least 2 weeks. Twenty-two patients underwent laparoscopic palliative surgery, and 171 patients underwent conventional open palliative surgery to relieve the symptoms of MBO. Laparoscopic palliative surgery was performed for patients with MBO due to colorectal cancer (n = 12), uterine cancer (n = 3), and other types of cancers (including gastric, prostate, and renal cancer). The following laparoscopic procedures were performed: stoma placement (n = 18), palliative resection (n = 3) and bypass (n = 2). The median operative time was 100 min and the median operative blood loss was 9 ml. The laparoscopic palliative operation allowed 91% (20/22) of the patients to consume a solid diet for more than 2 weeks, and be discharged from hospital. There were no significant differences between laparoscopic surgery and open surgery with regard to the ability to TSF or the postoperative mortality rate. The postoperative morbidity (Clavien-Dindo Grade ≥ II) rates in the laparoscopic and open surgery groups were 14% and 32%, respectively. Laparoscopic surgery led to a significantly lower rate of postoperative surgical site infection (SSI) in comparison to open surgery (4.5% vs 32%; P = 0.0053). A laparoscopic approach in palliative surgery for MBO was safe and feasible, and was associated with a lower incidence of SSIs. By minimizing the postoperative morbidity rate, the laparoscopic approach may provide significant benefits to patients with MBO who have a limited life

  10. Drug therapy for symptoms associated with anxiety in adult palliative care patients.

    PubMed

    Salt, Susan; Mulvaney, Caroline A; Preston, Nancy J

    2017-05-18

    This is an update of a Cochrane Review first published in 2004 (Issue 1) and previously updated in 2012 (Issue 10). Anxiety is common in palliative care patients. It can be a natural response to the complex uncertainty of having a life-limiting illness or impending death, but it may represent a clinically significant issue in its own right. To assess the effectiveness of drug therapy for treating symptoms of anxiety in adults with a progressive life-limiting illness who are thought to be in their last year of life. We ran the searches for this update to May 2016. We searched the CENTRAL, MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), PsychLIT (Silver Platter) and PsycINFO (Ovid). We searched seven trials registers and seven pharmaceutical industry trials registers. We handsearched the conference abstracts of the European Association of Palliative Care. Randomised controlled trials which examined the effect of drug therapy for the treatment of symptoms of anxiety in adult palliative care patients, that is, people with a known progressive life-limiting illness that is no longer responsive to curative treatment, including advanced heart, respiratory and neurological diseases (including dementia). Comparator treatments included placebo; another drug therapy or different dose schedule; or a non-drug intervention such as counselling, cognitive behaviour therapies or relaxation therapies. Two review authors independently screened titles and abstracts to identify potentially relevant papers for inclusion in the review. We sought full-text reports for all papers retained at this stage and two reviews authors independently assessed these for inclusion in the review. We planned to assess risk of bias and extract data including information on adverse events. We planned to assess the evidence using GRADE and to create a 'Summary of findings' table. In this update, we identified 707 potentially relevant papers and of these we sought the full-text reports of 10 papers. On

  11. Caring for patients with rabies in developing countries - the neglected importance of palliative care.

    PubMed

    Tarantola, Arnaud; Crabol, Yoann; Mahendra, Bangalore Jayakrishnappa; In, Sotheary; Barennes, Hubert; Bourhy, Hervé; Peng, Yiksing; Ly, Sowath; Buchy, Philippe

    2016-04-01

    Although limited publications address clinical management of symptomatic patients with rabies in intensive care units, the overwhelming majority of human rabies cases occur in the rural setting of developing countries where healthcare workers are few, lack training and drugs. Based on our experience, we suggest how clinicians in resource-limited settings can make best use of essential drugs to provide assistance to patients with rabies and their families, at no risk to themselves. Comprehensive and compassionate patient management of furious rabies should aim to alleviate thirst, anxiety and epileptic fits using infusions, diazepam or midazolam and antipyretic drugs via intravenous or intrarectal routes. Although the patient is dying, respiratory failure must be avoided especially if the family, after being informed, wish to take the patient home alive for funereal rites to be observed. Healthcare staff should be trained and clinical guidelines should be updated to include palliative care for rabies in endemic countries.

  12. Management of constipation in palliative care patients undergoing opioid therapy: is polyethylene glycol an option?

    PubMed

    Wirz, Stefan; Klaschik, Eberhard

    2005-01-01

    This study assessed the efficacy of laxative use for treatment of constipation in patients receiving opioid therapy, with special attention to polyethylene glycol 3350/electrolyte solution (PEG-ES). Computerized data from 206 patients were analyzed using descriptive statistics. Subgroups were analyzed using confirmatory statistics. Constipation occurred in 42.7 percent of patients. Laxatives were administered to 74.3 percent of these patients using a standardized step scheme, with good results in 78.4 percent. As a therapy for constipation, the combined administration of PEG-ES, sodium picosulphate, and liquid paraffin proved most effective, although statistical analysis yielded no significance. Early use of PEG-ES using a step scheme holds promise for treatment of opioid-related constipation in palliative care patients, although further investigation is warranted.

  13. Patients' psychosocial experiences of attending Specialist Palliative Day Care: a systematic review.

    PubMed

    Bradley, Sarah E; Frizelle, Dorothy; Johnson, Miriam

    2011-04-01

    Recent reviews conclude that the benefits of attending Specialist Palliative Day Care (SPDC) are likely to be in social, psychological and spiritual domains. However, these areas are not easily identified, leaving researchers and practitioners unclear as to what aspects of these domains patients most need and desire. The objective of this review was to systematically evaluate literature on patient-perceived psychosocial experiences of attendance at SPDC. Twelve studies were included. Evidence showed that patients value a person-centred approach that reduces isolation, increases social support, encourages communication and provides activities. Future research could focus on investigating why patients value the psychosocial experiences reported and how these experiences can be defined in a way that would be meaningful to clinical service commissioners. Once this has been done, clinicians can start to measure more effectively clinical effectiveness and devise justifiable interventions to help this patient group.

  14. Aloe vera for Dry Mouth Denture PatientsPalliative Therapy

    PubMed Central

    Reddy, S Varalakshmi; Kumar, M Praveen; Samee, Sarah

    2017-01-01

    Introduction Xerostomia (dry mouth) is dryness of the mouth which is due to reduced salivary flow. Lack of adequate saliva causes discomfort in denture wearing patients and decreases retention of dentures. The ability of saliva to wet the tissue surface is one of the most important properties for oral comfort and retention of complete denture in dry mouth patients. Aim This study was conducted to evaluate and compare the wetting ability of therapeutic Aloe vera saliva substitute and commercially available Aqwet saliva substitute on heat-polymerized acrylic resin. Contact angle of liquid saliva substitute was considered as an indicator of wettability. Materials and Methods Aloe vera liquid (Aloe vera – Group I) and Aqwet saliva substitute (Aqwet – Group II) were compared in terms of their wetting ability. Forty samples of heat-polymerized acrylic resin were fabricated and divided into two groups with 20 samples in each. Advancing, receding contact angles and angle of hysteresis were measured using contact angle goniometer and DSA4 software analysis. Mann-Whitney U test was applied for statistical analysis of the study. Results The mean advancing angle and receding angle of Group I (Aloe vera) was smaller than Group II (Aqwet). Mean angle of hysteresis of Group I (Aloe vera) was higher than Group II (Aqwet). Mann-Whitney U test revealed that there is no significant difference in contact angles between the two groups. Conclusion Wetting ability of Group I (Aloe vera) saliva substitute was found to be better compared to Group II (Aqwet) on heat-polymerized acrylic resin. PMID:28764287

  15. Palliative care delivery models.

    PubMed

    Wiencek, Clareen; Coyne, Patrick

    2014-11-01

    To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed. Literature review. The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient's condition.

  16. Management of specific symptom complexes in patients receiving palliative care

    PubMed Central

    Bruera, E; Neumann, C M

    1998-01-01

    During the past 10 years there have been major changes in the management of the most common symptoms of terminal cancer. Opioid agonists remain the mainstay in the management of cancer pain. Slow-release preparations are currently available for several of these agents. The increased use of opioids has led to the recognition of opioid-induced neurotoxic effects and to the development of effective adjuvant drugs and other strategies to counteract these side effects. A number of drugs are available for the management of symptoms of cachexia, including corticosteroids and progestational drugs. Prokinetic drugs, either alone or in combination with other agents such as corticosteroids, are highly effective in the treatment of chronic nausea. For patients with asthenia, it should first be determined whether there are any reversible causes; if not, corticosteroids and psychostimulants may diminish the symptoms. Haloperidol, other neuroleptics and benzodiazepines may be required to manage hyperactive delirium. Oxygen and opioids are effective in treating dyspnea, whereas there is limited evidence that benzodiazepines provide any relief of this symptom. More research on the assessment and management of these devastating clinical symptoms of cancer is badly needed. PMID:9676549

  17. [EMOTIONAL MANAGEMENT AND CRITICAL THINKING IN THE AID RELATIONSHIP OF THE HOLISTIC CARE OF PALLIATIVE PATIENTS].

    PubMed

    De Blas Gómez, Irene; Rodríguez García, Marta

    2015-05-01

    To care for palliative patients is essential that healthcare professionals develop emotional competencies. This means acquiring the habit of self reflection and be emphatic with other people, in order to be able to identify the personal emotions of patients, family and team. Reflection involves a continuing effort to reason about aspects of professional practice, especially on issues as complex as suffering and death. Both reflective reasoning and emotional management are vital in an Aid Relationship. For nursing healthcare professionals, to care the emotional aspects means becoming aware of their own and others feelings, and get to understand and accept to handle them properly. Nursing actions involves many qualities of social competence, such as empathy, understanding, communication skills, honesty, flexibility and adaptability to the individual needs of people cared. In the context of palliative care patients and their families all these aspects are fundamental and are part of the same philosophy. Emotional education still remains a challenge in our profession both in the initial and continuing training.

  18. Factors associated with location of death (home or hospital) of patients referred to a palliative care team.

    PubMed Central

    McWhinney, I R; Bass, M J; Orr, V

    1995-01-01

    OBJECTIVE: To identify factors associated with the location of death (home or hospital) of patients referred to a palliative care home support team. DESIGN: Retrospective case-control chart review. SETTING: Palliative care inpatient unit with a home support team in a large chronic care hospital. SUBJECTS: All 75 patients receiving services from the home support team who died at home between June 1988 and January 1990 and 75 randomly selected patients receiving the same services who died in hospital. OUTCOME MEASURES: Place of death (home or hospital). RESULTS: Of the 267 patients referred to the palliative care home support team during the study period 75 (28.1%) died at home. Factors significantly associated with dying at home were the patient's preference for dying at home recorded at the time of the initial assessment (p < 0.001), a family member other than the spouse involved in the patient's care (p = 0.021) and the use of private shift nursing (p < 0.001). The patients who died in hospital were more likely than the other patients to have had no home visits from the palliative care team after the initial assessment (p = 0.04). The patient's preference for dying at home was not met if the caregiver could not cope or if symptoms were uncontrolled. The patient's preference for dying in hospital was not met if his or her condition deteriorated rapidly or if the patient died suddenly. CONCLUSIONS: Patients' preference as to place of death, level of caregiver support and entitlement to private shift nursing were significantly associated with patients' dying at home. The determination of these factors should be part of every palliative care assessment. Patients and their families should be informed about available home support services. PMID:7530164

  19. Palliation With Endoscopic Metal Stents May Be Preferable to Surgical Intervention for Patients With Obstructive Pancreatic Head Adenocarcinoma

    PubMed Central

    Kofokotsios, Alexandros; Papazisis, Konstantinos; Andronikidis, Ioannis; Ntinas, Achilleas; Kardassis, Dimitrios; Vrochides, Dionisios

    2015-01-01

    The aim of this study was to evaluate the efficacy of endoscopically placed metal stents in comparison with operative procedures, in patients with obstructive pancreatic head cancer. Endoscopic stenting techniques and materials for gastrointestinal malignancies are constantly improving. Despite this evolution, many still consider operative procedures to be the gold standard for palliation in patients with unresectable obstructive pancreatic head cancer. This is a retrospective study of 52 patients who were diagnosed with obstructive (biliary, duodenal, or both) adenocarcinoma of the pancreatic head. Twenty-nine patients (endoscopy group) underwent endoscopic stenting. Eleven patients (bypass group) underwent biliodigestive bypass. Twelve patients (Whipple group) underwent Whipple operation with curative intent; however, histopathology revealed R1 resection (palliative Whipple). T4 disease was identified in 13 (44.8%), 7 (63.6%), and 3 (25%) patients in the endoscopy, bypass, and Whipple groups, respectively. Metastatic disease was present only in the endoscopy group (n = 12; 41.3%). There was no intervention-related mortality. Median survival was 280 days [95% confidence interval (95% CI), 103, 456 days], 157 days (95% CI, 0, 411 days), and 647 days (95% CI, 300, 993 days) for the endoscopy, bypass, and Whipple groups, respectively (P = 0.111). In patients with obstructive pancreatic head cancer, endoscopic stenting may offer equally good palliation compared with surgical double bypass. The numerically (not statistically) better survival after palliative Whipple might be explained by the smaller tumor burden in this subgroup of patients and not by the superior efficacy of this operation. PMID:26414833

  20. Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review.

    PubMed

    Cagle, John G; Bunting, Morgan; Kelemen, Anne; Lee, Joonyup; Terry, Dorothy; Harris, Ryan

    2017-02-20

    Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.

  1. Identification and characteristics of patients with palliative care needs in Brazilian primary care.

    PubMed

    Marcucci, Fernando C I; Cabrera, Marcos A S; Perilla, Anamaria Baquero; Brun, Marilia Maroneze; de Barros, Eder Marcos L; Martins, Vanessa M; Rosenberg, John P; Yates, Patsy

    2016-06-01

    The Brazilian healthcare system offers universal coverage but lacks information about how patients with PC needs are serviced by its primary care program, Estratégia Saúde da Família (ESF). Cross-sectional study in community settings. Patients in ESF program were screened using a Palliative Care Screening Tool (PCST). Included patients were assessed with Karnofsky Performance Scale (KPS), Edmonton Symptom Assessment System (ESAS) and Palliative Care Outcome Scale (POS). Patients with PC needs are accessing the ESF program regardless of there being no specific PC support provided. From 238 patients identified, 73 (43 women, 30 men) were identified as having a need for PC, and the mean age was 77.18 (95 % Confidence Interval = ±2,78) years, with non-malignant neurologic conditions, such as dementia and cerebrovascular diseases, being the most common (53 % of all patients). Chronic conditions (2 or more years) were found in 70 % of these patients, with 71 % scoring 50 or less points in the KPS. Overall symptom intensity was low, with the exception of some cases with moderate and high score, and POS average score was 14.16 points (minimum = 4; maximum = 28). Most patients received medication and professional support through the primary care units, but limitations of services were identified, including lack of home visits and limited multi-professional approaches. Patients with PC needs were identified in ESF program. Basic health care support is provided but there is a lack of attention to some specific needs. PC policies and professional training should be implemented to improve this area.

  2. Crossed views of burden and emotional distress of cancer patients and family caregivers during palliative care.

    PubMed

    Leroy, Tanguy; Fournier, Emmanuelle; Penel, Nicolas; Christophe, Véronique

    2016-11-01

    Studies regarding natural caregivers' burden (CB) in palliative situations, as well as its determinants and consequences, have been numerous during the last 20 years. Yet, studies regarding how terminally ill cancer patients perceive their CB (self-perceived burden, SPB) are less common. This study aims to assess the links between CB and SPB evaluated by means of the very same items. It also aims at identifying the determinants of potential differences between CB and SPB and their consequences on emotional distress among both members of the dyad. Sixty cancer patients from a palliative care unit and their principal natural caregiver completed questionnaires concerning the subjective burden of the caregiver, their own personal emotional distress and that of the other member of the dyad. Globally, patients had a good perception of their CB, although a little overestimated, except for their difficulties in managing their time. Caregivers overestimated patients' distress. The minimisation by patients of CB was a source of emotional distress for the latter, and the perception of being a burden to others was a source of depression for patients. These results did not depend on the nature of the relationship between patients and their caregivers. This data confirmed the need to study the experiences of the patient-caregiver dyad as well as their communication of their respective experiences, with a prospect to offer clinical interventions to optimise the quality of life and health of patients and their close relatives.Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

  3. Access to medications in the community by patients in a palliative setting. A systems analysis.

    PubMed

    Lucey, M; McQuillan, R; MacCallion, A; Corrigan, M; Flynn, J; Connaire, K

    2008-03-01

    This study performed a systems analysis of the process by which patients under the care of a specialist palliative home care obtained medications, and highlighted factors that delay this process. Systems analysis is the science dealing with analysis of complex, large-scale systems and the interactions within those systems. This study used a mixed-methods approach of questionnaires of general practitioners, pharmacists and patients, and a prospective observational study of delays experienced by patients referred to the home care team over a three-month period. This study found the main factors causing delay to be: medications not being in stock in pharmacies, medications not being available on state reimbursed schemes and inability of patients and carers to courier medications.

  4. [Admission to intensive care of palliative care patients : the stakes and factors influencing the decision].

    PubMed

    Escher, Monica; Nendaz, Mathieu; Ricou, Bara

    2017-02-01

    Palliative care patients have limited prospects of survival and the benefit of intensive care is uncertain. To make a decision there are considerations other than survival probabilities. Patients should receive appropriate care and be spared suffering. End of life in the intensive care unit has an impact on families, who may develop psychological problems or complicated grief. End of life care can be a source of conflicts and cause burnout in health providers. Finally, intensive care is an expensive resource, which must be fairly allocated. In these complex situations, patient preferences help make a decision. However, they have often not been discussed with the physicians. General practitioners have a role to play by promoting advance care planning with their patients.

  5. Phase Angle of Bioelectrical Impedance Analysis as Prognostic Factor in Palliative Care Patients at the National Cancer Institute in Mexico.

    PubMed

    Pérez Camargo, Dana A; Allende Pérez, Silvia R; Rivera Franco, Mónica M; Álvarez Licona, Nelson E; Urbalejo Ceniceros, Víctor I; Figueroa Baldenegro, Lilian E

    2017-01-01

    Patients with advanced cancer often experience symptoms of disease and treatment that contribute to distress such as weight loss, which is present in up to 85% of cancer patients. Palliative care in these patients focuses on care aimed at improving quality of life. Phase angle (PA) is obtained by bioelectric impedance analysis (BIA) and is associated with cellular function. It is considered a reliable marker of malnutrition. A low PA may suggest deterioration of the cell membrane, which in palliative patients may result in a short-term survival. The aim of this study was to associate PA and survival in palliative patients of the National Cancer Institute of Mexico. We included 452 patients (women, 56.4%); the average PA was 4.0°. The most frequent disease was gastric cancer (39.2%). Mean body mass index (BMI) was 22.84. The average survival of patients with PA ≤ 4° was 86 days, while in the group with PA > 4°, it was 163 days (P > 0.0001). PA showed significant positive correlation with survival time and BMI. Our results corroborate the reliability of PA in Mexican population, as an indicator of survival in palliative care patients compared to the reported literature in other countries.

  6. Talc pleurodesis as surgical palliation of patients with malignant pleural effusion. Analysis of factors affecting survival.

    PubMed

    Lumachi, Franco; Mazza, Francesco; Ermani, Mario; Chiara, Giordano B; Basso, Stefano M M

    2012-11-01

    Malignant pleural effusion (MPE) is common in most patients with advanced cancer, especially in those with lung cancer, metastatic breast carcinoma and lymphoma. This complication usually leads patients to suffer from significant dyspnea, which may impair their mobility and reduce their quality of life. In patients with MPE, several interventions have been shown to be useful for palliation of the symptoms, including talc pleurodesis. The aim of this study was to evaluate prognostic factors for survival of patients with symptomatic MPE who underwent palliative video-assisted thoracoscopic (VATS) talc pleurodesis. Thirty-five patients with MPE underwent VATS, evacuation of the pleural fluid and talc pleurodesis with large-particle talc. There were 22 (62.9%) males and 13 (37.1%) females, with an overall median age of 69 years (range 42-81 years). The main causes of MPE were non-small cell lung carcinoma, breast or ovarian cancer and malignant pleural mesothelioma. The age did not differ (p=0.88) between men (68.6±11.6 years) and women (68.0±8.7 years). The mean quantity of pleural effusion was 2005.7±1078.9 ml, while the overall survival was 11.2±8.9 months. We did not find any relationship between survival and gender (log-rank test, p=0.53) or underlying malignancy associated with MPE (p=0.89, 0.48 and 0.36 for secondary cancer, lung cancer and mesothelioma, respectively). Similarly, no correlation was found between survival and age of the patients (Cox's regression, p=0.44) or quantity of pleural effusion (p=0.88). Our results show that the prognosis of patients after talc pleurodesis is independent of age, gender, type of malignancy and amount of pleural effusion, thus, suggesting the utility of treating all patients with symptomatic MPE early.

  7. [Pain Intensity and Time to Death of Cancer Patients Referred to Palliative Care].

    PubMed

    Barata, Pedro; Santos, Filipa; Mesquita, Graça; Cardoso, Alice; Custódio, Maria Paula; Alves, Marta; Papoila, Ana Luísa; Barbosa, António; Lawlor, Peter

    2016-11-01

    Pain is a common symptom experienced by cancer patients, especially in those with advanced disease. Our aim was to describe pain intensity in advanced cancer patients, referred to the palliative care unit, the factors underlying moderate to severe pain and its prognostic values. This was a prospective observational study. All patients with mestastatic solid tumors and with no specific oncologic treatment were included. Pain intensity was accessed using the pain scale from Edmonton Symptom Assessment Scale, rated from 0 to 10 on a numerical scale, where zero = no pain and 10 = worst possible pain. Between October 2012 and June 2015, a total of 301 patients participated in the study. The median age was 69 years, (37 - 94); most of the patients were men (57%) and 64.8% had a performance status of 3/4. About 42% reported pain severity ≥ 4 and 74% were medicated with opioids. Multivariate analysis indicated a correlation between performance status and reported pain (OR: 1.7; IC 95%: 1.0 - 2.7; p = 0.045). Median overall survival was 37 days (IC 95%: 28 - 46). Patients reporting moderate to severe pain (pain severity ≥ 4) had a median survival of 29 days (IC 95%: 21 - 37), comparing with those who had no or moderate pain with median survival of 49 days (IC 95%: 35 - 63) (p = 0.022). The performance status was associated with more intense pain. The performance status, hospitalization, intra-abdominal metastization and opioid analgesia were associated with shorter time to death in advanced cancer patients referred to palliative care. Cancer pain continues to be a major clinical problem in advanced cancer patients.

  8. Ethical considerations and palliative care in patients with amyotrophic lateral sclerosis: A review.

    PubMed

    Danel-Brunaud, V; Touzet, L; Chevalier, L; Moreau, C; Devos, D; Vandoolaeghe, S; Defebvre, L

    2017-05-01

    Amyotrophic lateral sclerosis (ALS) is not a curable disease, but it is treatable. By definition, much of the care provided to ALS patients is palliative, even though active life-sustaining strategies are available to prolong survival. Healthcare professionals must develop communication skills that help patients cope with the inexorable progression of the disease and the inevitability of death. Symptomatic treatments as well as respiratory insufficiency and nutritional life-sustaining therapies must be regularly evaluated as the disease progresses, without losing sight of the burden placed on the patient's non-professional caregivers. The decision-making process regarding tracheostomy with invasive ventilation (TIV) is of greater complexity. Providing full information is crucial. Several long interviews are necessary to explain, discuss and allow assimilation of the information. Also, physicians should be careful not to focus exclusively on the biomedical aspects of disease, as ALS patients generally welcome the opportunity to discuss end-of-life issues with their physicians. Psychological factors, education level and cognitive status (especially the level of executive dysfunction) have a major influence on their decisions. However, as many patients do not complete advance directives with regard to TIV, advance care planning may instead be suggested in anticipation of emergency interventions. This should be discussed by healthcare professionals and the patient, and based on the wishes of the patient and caregiver(s), and communicated to all healthcare professionals. Many healthcare professionals are involved in the management of an ALS patient: they include not only those at ALS centers who provide diagnosis, follow-up and treatment initiation (particularly for respiratory and nutritional care), but also the medical and social care networks involved in disability support and home care. Specialist palliative care teams can work in partnership with ALS centers early

  9. Physical activity, quality of life, and the interest in physical exercise programs in patients undergoing palliative chemotherapy.

    PubMed

    Oechsle, Karin; Jensen, Wiebke; Schmidt, Tobias; Reer, Rüdiger; Braumann, Klaus-Michael; de Wit, Maike; Bokemeyer, Carsten

    2011-05-01

    Quality of life is of major importance in patients with advanced cancers undergoing palliative chemotherapy. In contrast to the number of studies on physical activity in patients with curable malignancies, data on patients undergoing palliative chemotherapy are scarce. A total of 53 patients receiving palliative chemotherapy on an outpatient basis were interviewed using three standardized questionnaires within a time period of 4 weeks (Questionnaire for Measurement of Habitual Physical Activity, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C13 questionnaire, International Physical Activity questionnaire), and a questionnaire regarding patients' acceptance of a potential physical training program. Thirty-six percent of the patients still performed self-instructed physical activities during palliative chemotherapy. Patients showed significantly higher values in the "leisure time index" during their malignancy than before (p < 0.01). Significantly positive correlations were found between "work index" and quality of life (p = 0.004), "work index" and physical function (p = 0.02), and "hours of physical activity per week" and quality of life (p < 0.05). A negative correlation was found between "work index" and fatigue (p < 0.05). Quality of life scores were significantly higher in patients with sportive activities ≥ 9 metabolic equivalent (MET) h/week than in patients with <9 MET h/weeks (p < 0.01). Sixty percent of patients indicated that they would be willing to participate in an individually adapted activity training program. In patients undergoing palliative chemotherapy, a statistically significant positive correlation between physical activity and quality of life could be demonstrated. About two thirds of critically ill patients are interested in participating in training programs.

  10. Learning to care: medical students' reported value and evaluation of palliative care teaching involving meeting patients and reflective writing.

    PubMed

    Borgstrom, Erica; Morris, Rachel; Wood, Diana; Cohn, Simon; Barclay, Stephen

    2016-11-25

    Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing. Two studies have explored students' perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing. Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1) dedicated time with patients, (2) learning about wider elements of treatment and holistic care, (3) practicing communication skills, and (4) learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay. It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these encounters valuable and many wrote about the benefit of formally

  11. Cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure.

    PubMed

    Wong, Frances Kam Yuet; So, Ching; Ng, Alina Yee Man; Lam, Po-Tin; Ng, Jeffrey Sheung Ching; Ng, Nancy Hiu Yim; Chau, June; Sham, Michael Mau Kwong

    2017-04-01

    Studies have shown positive clinical outcomes of specialist palliative care for end-stage heart failure patients, but cost-effectiveness evaluation is lacking. To examine the cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure patients as compared to the customary palliative care service. A cost-effectiveness analysis was conducted alongside a randomized controlled trial (Trial number: NCT02086305). The costs included pre-program training, intervention, and hospital use. Quality of life was measured using SF-6D. The study took place in three hospitals in Hong Kong. The inclusion criteria were meeting clinical indicators for end-stage heart failure patients including clinician-judged last year of life, discharged to home within the service area, and palliative care referral accepted. A total of 84 subjects (study = 43, control = 41) were recruited. When the study group was compared to the control group, the net incremental quality-adjusted life years gain was 0.0012 (28 days)/0.0077 (84 days) and the net incremental costs per case was -HK$7935 (28 days)/-HK$26,084 (84 days). The probability of being cost-effective was 85% (28 days)/100% (84 days) based on the cost-effectiveness thresholds recommended both by National Institute for Health and Clinical Excellence (£20,000/quality-adjusted life years) and World Health Organization (Hong Kong gross domestic product/capita in 2015, HK$328117). Results suggest that a transitional home-based palliative care program is more cost-effective than customary palliative care service. Limitations of the study include small sample size, study confined to one city, clinic consultation costs, and societal costs including patient costs and unpaid care-giving costs were not included.

  12. Which research questions are important for the bereaved families of palliative care cancer patients? A nationwide survey.

    PubMed

    Sakashita, Akihiro; Morita, Tatsuya; Kishino, Megumi; Aoyama, Maho; Kizawa, Yoshiyuki; Tsuneto, Satoru; Shima, Yasuo; Miyashita, Mitsunori

    2017-09-18

    Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; additionally, the family itself is also an important subject in the care of the patient. Therefore, while it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members. We conducted a cross-sectional, self-report questionnaire survey. Content analysis was performed on free-text answers for research priorities. This study was carried out as part of the third Japan HOspice and Palliative Care Evaluation (J-HOPE3) study. We extracted 1,658 codes from the transcripts and organized them into 120 subcategories on the basis of similarity. Subcategories were then organized into 8 categories as follows: palliative care services>, , , , , palliative care>, , and . The findings of this study can be used as a research agenda for palliative care, which should take first priority in the future, and could be carried out using limited resources. Copyright © 2017. Published by Elsevier Inc.

  13. The role of complementary indigenous Malay therapies: perspectives from palliative care patients.

    PubMed

    Lua, Pei Lin

    2011-01-01

    Although the popularity of complementary indigenous Malay therapies (CIMT) in general healthcare is undeniable in the Malaysian context today, their usage within the palliative care scenarios remains unexplored. Our study was specifically embarked to determine CIMT’s usage pattern, reasons, attitudes, beliefs, perceptions and health-related quality of life (HRQoL) differences (users vs. non-users) in a sample of hospice-based palliative patients in Selangor, Malaysia. From the 39 consenting patients (mean age = 56 years; female = 56.4 percent; Malay = 53.8 percent), 38.5 percent were users of CIMT. Dried medicinal roots, herbs and sea cucumber products were the most preferred types of CIMT (53.3 percent). The most common reason cited for usage was because these were "easier and simpler to be administered" (46.7 percent). Although users' attitudes, beliefs and perceptions were more favourable than the non-users, between 30.0-73.3 percent of users remained unsure or had no knowledge regarding CIMT. They also exhibited significantly poorer Physical Symptoms than the non-users (p=0.006), a probable motive for seeking CIMT in the first place. Despite the small sample size, the findings provided some insight into the role of CIMT especially with regard to usage trends and overall well-being among the terminally-ill, of which healthcare professionals should constantly be vigilant of amidst their routine care responsibilities.

  14. Assessment of a Hospital Palliative Care Unit (HPCU) for Cancer Patients; A Conceptual Framework

    PubMed Central

    Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak

    2015-01-01

    Introduction: The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). Materials and Methods: We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. Results: The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps Conclusion: Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended. PMID:26600701

  15. Initial Experience of Head and Neck Cancer Patients Treated in an Oncologist Led Palliative Cancer Care Clinic at a Tertiary Cancer Care Center in Uttar Pradesh: Is the Initiative of a Full-fledged Palliative Care for Cancer Patients Justified

    PubMed Central

    Lal, Punita; Verma, Mranalini; Kumar, Gaurav; Shrivastava, Resham; Kumar, Shaleen

    2016-01-01

    Introduction: Poor socioeconomic status and illiteracy attribute to the advanced presentation of head and neck cancer (HNC) patients in India and are candidates for palliation in our setup. We set up a palliative cancer care clinic (PCCC), and an audit of initial 153 HNC patients is presented. Aims and Objectives: To assess the impact of palliative cancer care services. Methodology: Data of advanced HNC patients suited for palliation were collected to document demography, symptomatology, cancer treatment, and supportive care. Results: One hundred and fifty-three patients were seen during January 2013 to March 2015 in the PCCC. Seventy-two (47%) referral cases were due to disease progression and 81 (53%) due to de novo advanced cases. Median follow-up for this group was 5.3 months. Ninety (59%) cases needed some degree of assistance for their normal activities. Sixty-seven (44%) patients belonged to poor socioeconomic status and 65 (43%) were educated up to equivalent of high school. One hundred and thirty-five (88%) patients had an adequate family support. Pain was the most common presenting symptom in 134 (87%) cases with adequate relief in 112 (84%) patients with another 13 (09%) could not be assessed. Overall median duration of symptoms was 6 months. Cancer-directed therapy was used in 143 (93%) patients. Near the end of life in 47 (73%) out of 63 documented cases, caregivers were psychologically prepared for the inevitable. Conclusion: The role of palliative care team in alleviating physical, psychosocial, and emotional issues of patient and family members was significant. PCCC seems to be a feasible working model in our setup. PMID:27803571

  16. Merkel cell carcinoma: A case of palliative upper limb amputation in a patient with refractory in-transit metastases.

    PubMed

    Gunaratne, Dakshika A; Howle, Julie R; Veness, Michael J

    2016-05-01

    We report an unusual case of Merkel cell carcinoma in a 70-year-old woman with the rapid development of left upper limb in-transit and hepatic metastases. The patient had a preceding history of left-sided breast cancer. Palliative chemotherapy with carboplatin and etoposide produced a minimal response. The in-transit metastases rapidly progressed and were refractory to chemotherapy and a single fraction of palliative radiotherapy, leading to a marked impact on her quality of life, secondary to sepsis and bleeding. After lengthy discussion, she consented to an above-elbow amputation resulting in a marked improvement in her well-being. In this case, we believe that palliative amputation of the involved arm was justified and beneficial to the patient. © 2015 The Australasian College of Dermatologists.

  17. Ventricular morphology is a determinant of diastolic performance in patients with single ventricle physiology undergoing stage 3 palliative surgery.

    PubMed

    Seckeler, Michael D; O'Leary, Edward; Anitha Jayakumar, K

    2015-04-01

    Patients with single ventricle anatomy undergo staged surgical palliation which results in pulmonary and systemic circulations in series with a single systemic pump. Single right ventricular morphology has been found to be an independent risk factor for worse survival. We sought to compare patients with single left (SLV) and single right (SRV) ventricular morphology to identify hemodynamic differences that may contribute to worse survival in patients with a single right ventricular. Single center, retrospective review of invasive hemodynamic data. All patients with single ventricle anatomy who underwent superior cavo-pulmonary anastomosis (Stage 2 palliation) and/or total cavo-pulmonary anastomosis (Stage 3 palliation) from August 1995 through May 2011 were identified. Patients were compared over time, and SLV and SRV patients were compared. Seventy-nine single ventricle patients (56 % SRV) underwent staged palliation and were analyzed. There was no difference in overall mortality (12 % SLV, 11 % SRV). There was no difference in hemodynamics at pre-Stage 2 catheterization between ventricular morphology, but SRV patients had higher ventricular end-diastolic pressure at pre-Stage 3 catheterization (7.6 vs. 6.4 mmHg, p = 0.026). End-diastolic pressure decreased after Stage 2 surgery for SLV patients, but not SRV patients. Intrinsic differences in morphology, function, and response to performing as the systemic ventricle between single right and left ventricles may lead to an elevated ventricular end-diastolic pressure. This could limit passive flow through the pulmonary circuit and coronary perfusion after Stage 3 palliation and potentially lead to poorer long-term performance for SRV patients.

  18. Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

    PubMed

    Norinder, Maria; Goliath, Ida; Alvariza, Anette

    2017-06-01

    Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

  19. Palliative Medicine and Decision Science: The Critical Need for a Shared Agenda To Foster Informed Patient Choice in Serious Illness

    PubMed Central

    Kryworuchko, Jennifer; Matlock, Dan D.; Volandes, Angelo E.

    2011-01-01

    Abstract Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families. PMID:21895453

  20. Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

    PubMed Central

    Worth, Allison; Boyd, Kirsty; Kendall, Marilyn; Heaney, David; Macleod, Una; Cormie, Paul; Hockley, Jo; Murray, Scott

    2006-01-01

    Background New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. Aim To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. Design of study Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. Setting Urban, semi-urban and rural communities in three areas of Scotland. Method Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. Results Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. Conclusions Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups. PMID:16438809

  1. Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers.

    PubMed

    Sarmento, Vera P; Gysels, Marjolein; Higginson, Irene J; Gomes, Barbara

    2017-02-23

    To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  2. Is palliative laparoscopic hyperthermic intraperitoneal chemotherapy effective in patients with malignant hemorrhagic ascites?

    PubMed

    de Mestier, Louis; Volet, Julien; Scaglia, Elodie; Msika, Simon; Kianmanesh, Reza; Bouché, Olivier

    2012-01-01

    Malignant hemorrhagic ascites may complicate the terminal evolution of digestive cancers with peritoneal carcinomatosis. It has a bad influence on prognosis and may severely impair patients' quality of life. Palliative laparoscopic hyperthermic intraperitoneal chemotherapy (HIPEC) has been proposed to treat debilitating malignant ascites. Two cases of peritoneal carcinomatosis causing hemorrhagic ascites and severe anemia that needed iterative blood transfusions are reported. These patients were treated by laparoscopic HIPEC (mitomycin C and cisplatin with an inflow temperature of 43°C), resulting in cessation of peritoneal bleeding. No postoperative complication or relapse of ascites occurred during the following months. No more blood transfusion was needed. Laparoscopic HIPEC might be an effective and safe therapeutic option to consider in patients with malignant hemorrhagic ascites.

  3. Interprofessional collaboration in palliative nursing: what is the patient-family role?

    PubMed

    McDonald, Christine; McCallin, Antoinette

    2010-06-01

    Interprofessional collaboration occurs when health professionals from different disciplines work together to identify needs, solve problems, make joint decisions on how best to proceed, and evaluate outcomes collectively. Interprofessional collaboration supports patient-centred care and takes place through teamwork. Team interactions, wider organizational issues, and environmental structures, such as safety, quality, efficiency and effectiveness issues influence this model of care. These broader contextual influences affect practice where there are tensions between the ideals of interprofessional collaboration and the realities of practice. This is evident when the patient and family position in interprofessional collaboration is considered. This article will discuss factors that affect interprofessional collaboration in relation to patients and families in palliative care. First, a definition of interprofessional collaboration is given, followed by an outline of the need for interprofessional collaboration. A brief discussion of key issues that influence collaboration follows, and a review of the implications for practice is presented.

  4. A Study of the Association Between Multidisciplinary Home Care and Home Death Among Thai Palliative Care Patients.

    PubMed

    Nagaviroj, Kittiphon; Anothaisintawee, Thunyarat

    2017-06-01

    Many terminally ill patients would prefer to stay and die in their own homes, but unfortunately, some may not be able to do so. Although there are many factors associated with successful home deaths, receiving palliative home visits from the multidisciplinary care teams is one of the key factors that enable patients to die at home. Our study was aimed to find whether there was any association between our palliative home care program and home death. A retrospective study was conducted in the Department of Family Medicine at Ramathibodi Hospital between January 2012 and May 2014. All of the patients who were referred to multidisciplinary palliative care teams were included. The data set comprised of patient's profile, disease status, functional status, patient's symptoms, preferred place of death, frequency of home visits, types of team interventions, and patient's actual place of death. Multiple logistic regression was applied in order to determine the association between the variables and the probability of dying at home. A total of 142 patients were included into the study. At the end of the study, 50 (35.2%) patients died at home and 92 (64.8%) patients died in the hospital. The multivariate logistic regression analysis demonstrated a strong association between multidisciplinary home care and home death (odds ratio 6.57, 95% confidence interval [CI] 2.48-17.38). Palliative home care was a significant factor enabling patients who want to die at home. We encourage health policy makers to promote the development of community-based palliative care programs in Thailand.

  5. Collecting biological material from palliative care patients in the last weeks of life: a feasibility study

    PubMed Central

    Scott, Aileen; Nwosu, Amara Callistus; Latten, Richard; Wilson, James; Mayland, Catriona R; Mason, Stephen; Probert, Chris; Ellershaw, John

    2016-01-01

    Objective To assess the feasibility of prospectively collecting biological samples (urine) from palliative care patients in the last weeks of life. Setting A 30-bedded specialist hospice in the North West of England. Participants Participants were adults with a diagnosis of advanced disease and able to provide written informed consent. Method Potential participants were identified by a senior clinician over a 12-week period in 2014. They were then approached by a researcher and invited to participate according to a developed recruitment protocol. Outcomes Feasibility targets included a recruitment rate of 50%, with successful collection of samples from 80% who consented. Results A total of 58 patients were approached and 33 consented (57% recruitment rate). Twenty-five patients (43%) were unable to participate or declined; 10 (17%) became unwell, too fatigued, lost capacity, died or were discharged home; and 15 (26%) refused, usually these patients had distressing pain, low mood or profound fatigue. From the 33 recruited, 20 participants provided 128 separate urine samples, 12 participants did not meet the inclusion criteria at the time of consent and 1 participant was unable to provide a sample. The criterion for a urinary catheter was removed for the latter 6 weeks. The collection rate during the first 6 weeks was 29% and 93% for the latter 6 weeks. Seven people died while the study was ongoing, and another 4 participants died in the following 4 weeks. Conclusions It is possible to recruit and collect multiple biological samples over time from palliative care patients in the last weeks and days of life even if they have lost capacity. Research into the biological changes at the end of life could develop a greater understanding of the biology of the dying process. This may lead to improved prognostication and care of patients towards the end of life. PMID:28186928

  6. Physiotherapy programme reduces fatigue in patients with advanced cancer receiving palliative care: randomized controlled trial.

    PubMed

    Pyszora, Anna; Budzyński, Jacek; Wójcik, Agnieszka; Prokop, Anna; Krajnik, Małgorzata

    2017-09-01

    Cancer-related fatigue (CRF) is a common and relevant symptom in patients with advanced cancer that significantly decreases their quality of life. The aim of this study was to evaluate the effect of a physiotherapy programme on CRF and other symptoms in patients diagnosed with advanced cancer. The study was designed as a randomized controlled trial. Sixty patients diagnosed with advanced cancer receiving palliative care were randomized into two groups: the treatment group (n = 30) and the control group (n = 30). The therapy took place three times a week for 2 weeks. The 30-min physiotherapy session included active exercises, myofascial release and proprioceptive neuromuscular facilitation (PNF) techniques. The control group did not exercise. The outcomes included Brief Fatigue Inventory (BFI), Edmonton Symptom Assessment Scale (ESAS) and satisfaction scores. The exercise programme caused a significant reduction in fatigue scores (BFI) in terms of severity of fatigue and its impact on daily functioning. In the control group, no significant changes in the BFI were observed. Moreover, the physiotherapy programme improved patients' general well-being and reduced the intensity of coexisting symptoms such as pain, drowsiness, lack of appetite and depression. The analysis of satisfaction scores showed that it was also positively evaluated by patients. The physiotherapy programme, which included active exercises, myofascial release and PNF techniques, had beneficial effects on CRF and other symptoms in patients with advanced cancer who received palliative care. The results of the study suggest that physiotherapy is a safe and effective method of CRF management.

  7. Facilitators and barriers for GP–patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants

    PubMed Central

    Slort, Willemjan; Blankenstein, Annette H; Deliens, Luc; van der Horst, Henriëtte E

    2011-01-01

    Background Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care. Aim To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills. Design of study Qualitative study with focus groups, interviews, and questionnaires. Setting GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands. Method GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers. Results Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios. Conclusion The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated. PMID:21439174

  8. Effect of Palliative Care–Led Meetings for Families of Patients With Chronic Critical Illness

    PubMed Central

    Carson, Shannon S.; Cox, Christopher E.; Wallenstein, Sylvan; Hanson, Laura C.; Danis, Marion; Tulsky, James A; Chai, Emily; Nelson, Judith E.

    2016-01-01

    IMPORTANCE Family caregivers of patients with chronic critical illness experience significant psychological distress. OBJECTIVE To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. DESIGN, SETTING, AND PARTICIPANTS A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes. INTERVENTIONS At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. MAIN OUTCOMES AND MEASURES The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival. RESULTS Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively

  9. New Zealand palliative care nurses experiences of providing spiritual care to patients with life-limiting illness.

    PubMed

    Walker, Hannah; Waterworth, Susan

    2017-01-02

    Internationally it is recognised that providing spiritual care is essential to reduce spiritual distress, particularly in patients who are facing a life-limiting illness. This study sought to explore palliative care nurses experiences providing spiritual care to their patients who are facing a life-limiting illness. This study used a qualitative approach: interviews took place with nine nurses working across three hospices in New Zealand in 2013. Nine palliative care nurses participated in the study. Their average age was 53 years and palliative care experience ranged from 3-22 years, with an average of 9 years. The narrative descriptions of nine palliative care nurses were demonstrated under the categories of the assessment of spiritual needs: recognition of spiritual distress, provision of spiritual care and documentation of spiritual care. Additionally, eight sub-categories: individuality and respect; connection; love and compassion; meaning, touching and presence; communication; divine-related spiritual care provision and referral; death preparation and post-modern spiritual care were identified under the category of provision of spiritual care. There are challenges in identifying and defining spiritual distress and there is complexity in the provision of spiritual care. However, for the nurses in this study, focusing on the individual patient and developing a relationship that enabled the patient's unique spiritual needs to be met was highly valued. Creating a culture where nurses, and other health professionals involved in the patient's care, share their experiences of spiritual care provision and discussion about how this can be documented is needed.

  10. Is Palliative Laparoscopic Hyperthermic Intraperitoneal Chemotherapy Effective in Patients with Malignant Hemorrhagic Ascites?

    PubMed Central

    de Mestier, Louis; Volet, Julien; Scaglia, Elodie; Msika, Simon; Kianmanesh, Reza; Bouché, Olivier

    2012-01-01

    Malignant hemorrhagic ascites may complicate the terminal evolution of digestive cancers with peritoneal carcinomatosis. It has a bad influence on prognosis and may severely impair patients’ quality of life. Palliative laparoscopic hyperthermic intraperitoneal chemotherapy (HIPEC) has been proposed to treat debilitating malignant ascites. Two cases of peritoneal carcinomatosis causing hemorrhagic ascites and severe anemia that needed iterative blood transfusions are reported. These patients were treated by laparoscopic HIPEC (mitomycin C and cisplatin with an inflow temperature of 43°C), resulting in cessation of peritoneal bleeding. No postoperative complication or relapse of ascites occurred during the following months. No more blood transfusion was needed. Laparoscopic HIPEC might be an effective and safe therapeutic option to consider in patients with malignant hemorrhagic ascites. PMID:22679405

  11. The ethical and legal aspects of palliative sedation in severely brain-injured patients: a French perspective.

    PubMed

    Baumann, Antoine; Claudot, Frédérique; Audibert, Gérard; Mertes, Paul-Michel; Puybasset, Louis

    2011-02-08

    To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions for these patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made.

  12. The ethical and legal aspects of palliative sedation in severely brain-injured patients: a French perspective

    PubMed Central

    2011-01-01

    To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions for these patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made. PMID:21303504

  13. Patient Home Visits: Measuring Outcomes of a Community Model for Palliative Care Education

    PubMed Central

    Allo, Julio A.; Cuello, Deanna; Zhang, Yi; Reddy, Suresh K.; Azhar, Ahsan

    2016-01-01

    Abstract Background: Health care professionals may have limited exposure to home-based care. There is no published literature that has described the experiences and satisfaction of participation in patient home visits (PHV). Objective: The objective of this article is to describe the characteristics of PHV, our approach, and evaluation by participants over a nine-year period. Methods: We conducted a review of surveys completed by participants in PHV from 2005–2013. All participants anonymously completed the evaluation questionnaires at the end of PHVs. Different PHV assessment forms were used for the 2005–2010 and 2011–2013 time periods. Results: A total of 34 PHVs were conducted with 106 patients and approximately 750 participants with a mean of 3 patients and 22 participants per PHV between 2005 and 2013. For 18 PHVs there are 317 surveys completed with 353 participants, making it a 90% response rate. Responding participants were physicians 125/543 (23%) and other professionals 418/543 (77%). In both time periods of 2005–2010 and 2011–2013 a survey with a 1 (completely agree) to 5 (completely disagree) scale was used. Agreeing that PHV was an effective teaching tool during 2005–2010 were 335/341 (98%); during 2011–2013, 191/202 (95%) agreed that PHV provided increased understanding and sharing of best practices in palliative care. Conclusions: PHV was perceived by participants as an effective way of providing interactive community education. A broad range of themes were addressed, and the participants reported high levels of learning in all domains of palliative care. There were no cases of patient or relative expression of distress as a result of PHV. PMID:26652056

  14. Spirituality and Palliative Care

    PubMed Central

    Broeckaert, Bert

    2011-01-01

    This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical) choices people make, respect their own conscience and worldview too and cultivate conscious compassion. PMID:21811369

  15. The communication experiences of patients with palliative care needs: A systematic review and meta-synthesis of qualitative findings.

    PubMed

    Murray, Craig D; McDonald, Claire; Atkin, Heather

    2015-04-01

    Optimal communication is essential in ensuring that the palliative care needs of patients are met. This continues to be an area of concern for healthcare providers. The goal of our present review was to gain a deeper understanding of the communication experiences of patients with palliative care needs that have been identified within the qualitative literature. A systematic search for qualitative research papers was undertaken in February of 2012. Five databases (ASSIA, CINAHL, MEDLINE, PsychArticles, and PsychINFO) were searched using the search terms ["palliative care" OR "terminal care" OR "end of life care"] AND ["experience" OR "perspective" OR "qualitative" OR "interview"] AND ["patients" OR "clients" OR "service-user"]. Meta-synthesis was conducted on the data within the found papers. A line-of-argument synthesis of 15 studies yielded four overarching themes: talking-facilitating and inhibiting factors; the importance of humanitarian qualities within communication encounters; perceptions of autonomy within communication experiences; and individual differences in preferences for honesty within interactions. Our findings are discussed in relation to existing literature and offer a deeper insight into the communication experiences of this clinical population. A number of clinical implications are offered for the healthcare professionals who are providing support to patients with palliative care needs.

  16. Palliative care: do all patients now have a choice about where they die?

    PubMed

    Slater, Lyndsey

    Modern day palliative care has developed over the past 40 years and many government policies have been produced to support the development of services. Guidance sets out the aims and objectives for delivering palliative care, which are that every person with a life threatening illness has the right to receive appropriate palliative care wherever they are. This article explores whether people do have a choice about the care they receive and where that care is delivered.

  17. Examining ethical dilemmas as obstacles to hospice and palliative care for advanced cancer patients.

    PubMed

    Daugherty, Christopher K

    2004-01-01

    Oncologists deal almost exclusively with patients with serious and life-threatening diseases, many who are terminally ill. While hospice care remains an ideal model of care for cancer patients with life-ending disease, many obstacles are present in the clinical setting that either impede or prevent the otherwise appropriate referral of patients eligible for this type of end-of-life care. These obstacles are best viewed as ethical dilemmas for oncology clinicians, as they often challenge or obscure a clinician's perceptions about what is in the best interests of their advanced cancer patients. These dilemmas include: Issues surrounding prognosis determination and communication, Concerns about effectively communicating a terminal prognosis while still allowing patients and families to maintain hope, Conflicts of interests for involved clinicians and, Potential problems of the current reimbursement mechanisms for hospice which may be inadequate to meet the needs of all dying cancer patients. For oncologists caring for advanced cancer patients, it is essential that they have a working knowledge regarding these ethical issues, and overt dilemmas, present in end-of-life cancer care in order that they might better appreciate how, and when, to initiate palliative and hospice care for as many of their patients as possible.

  18. Treatment targeted at underlying disease versus palliative care in terminally ill patients: a systematic review

    PubMed Central

    Reljic, Tea; Kumar, Ambuj; Klocksieben, Farina A; Djulbegovic, Benjamin

    2017-01-01

    Objective To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients. Design We performed a systematic review and meta-analysis of randomised controlled trials (RCT). Methodological quality of included RCTs was assessed using the Cochrane risk of bias tool. Data sources Medline and Cochrane databases were searched, with no language restriction, from inception to 19 October 2016. Eligibility criteria for selecting studies Any RCT assessing the efficacy of any active TTD versus PC in adult patients with terminal illness with a prognosis of <6-month survival were eligible for inclusion. Results Initial search identified 8252 citations of which 10 RCTs (15 comparisons, 1549 patients) met inclusion criteria. All RCTs included patients with cancer. OS was reported in 7 RCTs (8 comparisons, 1158 patients). The pooled results showed no statistically significant difference in OS between TTD and PC (HR (95% CI) 0.85 (0.71 to 1.02)). The heterogeneity between pooled studies was high (I2=62.1%). Overall rates of adverse events were higher in the TTD arm. Conclusions Our systematic review of available RCTs in patients with terminal illness due to cancer shows that TTD compared with PC did not demonstrably impact OS and is associated with increased toxicity. The results provide assurance to physicians, patients and family that the patients' survival will not be compromised by referral to hospice with focus on PC. PMID:28062473

  19. Pressure ulcers in palliative ward patients: hyponatremia and low blood pressure as indicators of risk

    PubMed Central

    Sternal, Danuta; Wilczyński, Krzysztof; Szewieczek, Jan

    2017-01-01

    Background Prevention strategies for pressure ulcer formation remain critical in patients with an advanced illness. We analyzed factors associated with the development of pressure ulcers in patients hospitalized in a palliative care ward setting. Patients and methods This study was a retrospective analysis of 329 consecutive patients with a mean age (± standard deviation) of 70.4±11.8 years (range: 30–96 years, median 70.0 years; 55.3% women), who were admitted to the Palliative Care Department between July 2012 and May 2014. Results Patients were hospitalized for mean of 24.8±31.4 days (1–310 days, median 14 days). A total of 256 patients (77.8%) died in the ward and 73 patients (22.2%) were discharged. Two hundred and six patients (62.6%) did not develop pressure ulcers during their stay in the ward, 84 patients (25.5%) were admitted with pressure ulcers, and 39 patients (11.9%) developed pressure ulcers in the ward. Four factors assessed at admission appear to predict the development of pressure ulcers in the multivariate logistic regression model: Waterlow score (odds ratio [OR] =1.140, 95% confidence interval [CI] =1.057–1.229, P=0.001), transfer from other hospital wards (OR =2.938, 95% CI =1.339–6.448, P=0.007), hemoglobin level (OR =0.814, 95% CI =0.693–0.956, P=0.012), and systolic blood pressure (OR =0.976, 95% CI =0.955–0.997, P=0.023). Five other factors assessed during hospitalization appear to be associated with pressure ulcer development: mean evening body temperature (OR =3.830, 95% CI =1.729–8.486, P=0.001), mean Waterlow score (OR =1.194, 95% CI =1.092–1.306, P<0.001), the lowest recorded sodium concentration (OR =0.880, 95% CI =0.814–0.951, P=0.001), mean systolic blood pressure (OR =0.956, 95% CI =0.929–0.984, P=0.003), and the lowest recorded hemoglobin level (OR =0.803, 95% CI =0.672–0.960, P=0.016). Conclusion Hyponatremia and low blood pressure may contribute to the formation of pressure ulcers in patients with an

  20. Long-Term Intermittent Palliative Sedation for Refractory Symptoms at the End of Life in Two Cancer Patients.

    PubMed

    Song, Haa-Na; Lee, Un Seok; Lee, Gyeong-Won; Hwang, In Gyu; Kang, Jung Hun; Eduardo, Bruera

    2015-09-01

    Palliative sedation (PS) can be classified as either continuous or intermittent. Continuous PS is most commonly used in end-of-life care, while no specific indication for intermittent PS exists. Here we describe two cases of refractory severe cancer pain with psychological anguish that were controlled successfully by intermittent IPS for the long time. One patient complained of refractory severe cancer pain and insomnia. The other patient had uncontrollable pain and delirium, whose sufferings were relieved by intermittent PS. Case Management and Outcome: Intermittent PS was offered to the cases every night-time with family member/patient's consent. After providing intermittent PS, cancer pain decreased to mild intensity and psychological symptoms were significant improved simultaneously with patients awake during day time. Palliative PS may stop vicious cycle of physical and psychological distress in terminal cancer patients. Furthermore, intermittent type of PS could keep patients consciousness alert during day time and may be performed repeatedly for the long time.

  1. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    PubMed

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  2. Pressure ulcers in palliative ward patients: hyponatremia and low blood pressure as indicators of risk.

    PubMed

    Sternal, Danuta; Wilczyński, Krzysztof; Szewieczek, Jan

    2017-01-01

    Prevention strategies for pressure ulcer formation remain critical in patients with an advanced illness. We analyzed factors associated with the development of pressure ulcers in patients hospitalized in a palliative care ward setting. This study was a retrospective analysis of 329 consecutive patients with a mean age (± standard deviation) of 70.4±11.8 years (range: 30-96 years, median 70.0 years; 55.3% women), who were admitted to the Palliative Care Department between July 2012 and May 2014. Patients were hospitalized for mean of 24.8±31.4 days (1-310 days, median 14 days). A total of 256 patients (77.8%) died in the ward and 73 patients (22.2%) were discharged. Two hundred and six patients (62.6%) did not develop pressure ulcers during their stay in the ward, 84 patients (25.5%) were admitted with pressure ulcers, and 39 patients (11.9%) developed pressure ulcers in the ward. Four factors assessed at admission appear to predict the development of pressure ulcers in the multivariate logistic regression model: Waterlow score (odds ratio [OR] =1.140, 95% confidence interval [CI] =1.057-1.229, P=0.001), transfer from other hospital wards (OR =2.938, 95% CI =1.339-6.448, P=0.007), hemoglobin level (OR =0.814, 95% CI =0.693-0.956, P=0.012), and systolic blood pressure (OR =0.976, 95% CI =0.955-0.997, P=0.023). Five other factors assessed during hospitalization appear to be associated with pressure ulcer development: mean evening body temperature (OR =3.830, 95% CI =1.729-8.486, P=0.001), mean Waterlow score (OR =1.194, 95% CI =1.092-1.306, P<0.001), the lowest recorded sodium concentration (OR =0.880, 95% CI =0.814-0.951, P=0.001), mean systolic blood pressure (OR =0.956, 95% CI =0.929-0.984, P=0.003), and the lowest recorded hemoglobin level (OR =0.803, 95% CI =0.672-0.960, P=0.016). Hyponatremia and low blood pressure may contribute to the formation of pressure ulcers in patients with an advanced illness.

  3. Palliation in oesophageal neoplasia.

    PubMed Central

    Bancewicz, J.

    1999-01-01

    Oesophageal cancer is an increasingly common disease in the UK. Sadly, the overall results of treatment remain poor with overall 5 year survival of approximately 10%. More than 50% of patients receive purely palliative care from the outset. Of those having potentially curative treatment, 40% will not survive the first year and 70% will not survive 5 years. Good quality palliation is, therefore, required for the majority of patients. PMID:10655890

  4. [The current status of home palliative care for patients with advanced cancer at the Jikei University School of Medicine].

    PubMed

    Nagasaki, Eijiro; Sakuyama, Toshikazu; Hayashi, Kazumi; Sakaji, Yukie; Aoki, Masako; Naito, Yasuko; Arakawa, Yasuhiro; Uwagawa, Tadashi; Kobayashi, Tadashi; Aiba, Keisuke

    2014-12-01

    Medical oncologists are involved in cancer chemotherapy as well as end-of-life care. Recently, an increased number of patients with advanced cancer have expressed their preference to receive palliative care at their home during the end-of-life period, and several home medical care providers have aimed to provide such a service. The number of cancer patients who wish to receive home palliative care has also increased at our institution. We reviewed the characteristics of advanced cancer patients who received chemotherapy and who eventually received homecare from 2012 to 2014. The total number of patients was 22. Of these, 9 had breast cancer(40.9%)and 8 had colorectal cancer(36.4%). The median age was 68(range 36-90) years. Half of these patients died at home. The median duration of homecare to death was 64.5(range 12-252)days. Approximately 70% of patients were able to remain at home for over a month, but 3 patients died within 2 weeks at home and 1 patient returned to the hospital after 10 days of homecare due to disease progression. While palliative care in the home setting is valued by many cancer patients in the end-of-life period, close monitoring is needed for patients with rapidly progressing disease.

  5. Resuscitation and perioperative management of the high-risk single ventricle patient: first-stage palliation.

    PubMed

    Lowry, Adam W

    2012-01-01

    Infants born with hypoplastic left heart syndrome or other lesions resulting in a single right ventricle face the highest risk of mortality among all forms of congenital heart disease. Before the modern era of surgical palliation, these conditions were universally lethal; recent refinements in surgical technique and perioperative management have translated into dramatic improvements in survival. Nonetheless, these infants remain at a high risk of morbidity and mortality, and an appreciation of single ventricle physiology is fundamental to the care of these high-risk patients. Herein, resuscitation and perioperative management of infants with hypoplastic left heart syndrome are reviewed. Basic neonatal and pediatric life support recommendations are summarized, and perioperative first-stage clinical management strategies are reviewed.

  6. Patient-centered care or cultural competence: negotiating palliative care at home for Chinese Canadian immigrants.

    PubMed

    Nielsen, Lisa Seto; Angus, Jan E; Howell, Doris; Husain, Amna; Gastaldo, Denise

    2015-06-01

    The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is an assumption that dying at home is not the preferred option. This focused ethnographic study examined the palliative home care experiences of 4 Chinese immigrants with terminal cancer, their family caregivers, and home care nurses and key informant interviews with 11 health care providers. Three main themes emerged: (1) the many facets of taboo; (2) discursive tensions between patient-centered care and cultural competence; and (3) rethinking language barriers. Thus, training on cultural competence needs to move away from models that portray cultural beliefs as shared, fixed patterns, and take into account the complicated reality of everyday care provision at end of life in the home.

  7. A Clinical Decision Support Tool To Predict Survival in Cancer Patients beyond 120 Days after Palliative Chemotherapy

    PubMed Central

    Ng, Terence

    2012-01-01

    Abstract Background Palliative chemotherapy is often administered to terminally ill cancer patients to relieve symptoms. Yet, unnecessary use of chemotherapy can worsen patients' quality of life due to treatment-related toxicities. Thus, accurate prediction of survival in terminally ill patients can help clinicians decide on the most appropriate palliative care for these patients. However, studies have shown that clinicians often make imprecise predictions of survival in cancer patients. Hence, the purpose of this study was to create a clinical decision support tool to predict survival in cancer patients beyond 120 days after palliative chemotherapy. Materials and Methods Data were obtained from a retrospective study of 400 randomly selected terminally ill cancer patients in the National Cancer Centre Singapore (NCCS) from 2008 to 2009. After removing patients with missing data, there were 325 patients remaining for model development. Three classification algorithms, naive Bayes (NB), neural network (NN), and support vector machine (SVM) were used to create the models. A final model with the best prediction performance was then selected to develop the tool. Results The NN model had the best prediction performance. The accuracy, specificity, sensitivity, and area under the curve (AUC) of this model were 78%, 82%, 74%, and 0.857, respectively. Five patient attributes (albumin level, alanine transaminase level (ATL), absolute neutrophil count, Eastern Cooperative Oncology Group (ECOG) status, and number of metastatic sites) were included in the model. Conclusions A decision support tool to predict survival in cancer patients beyond 120 days after palliative chemotherapy was created. With further validation, this tool coupled with the professional judgment of clinicians can help improve patient care. PMID:22690950

  8. Patient-related barriers to cancer pain management in a palliative care setting in Hong Kong.

    PubMed

    Chung, T K; French, P; Chan, S

    1999-06-01

    This article reviews a study of pain management and its barriers in Hong Kong. Using an interview technique, several measures were used to understand the level of concern in patients about pain, the patients' hesitancy in reporting pain, use of analgesics, and adequacy of medication for pain. A total of nine barriers were identified, which include "addiction," "tolerance," "side effects," "physician distraction," "good patient," "fear of injection," "time interval," "fatalism," and "disease progression." Thirty-nine interviews were carried out. The interviewees were all cancer patients with pain in a palliative setting in Hong Kong. When the findings in Taiwan and the United States were compared, it was found that the cancer patients in Hong Kong had a higher level of concern toward the patient-related barriers. It was also found that the level of concern was generally higher in the group with hesitancy in reporting pain and using analgesics. Last of all, this project also identified the educational needs of patients and health care workers in Hong Kong.

  9. Existential behavioural therapy for informal caregivers of palliative patients: a randomised controlled trial.

    PubMed

    Fegg, M J; Brandstätter, M; Kögler, M; Hauke, G; Rechenberg-Winter, P; Fensterer, V; Küchenhoff, H; Hentrich, M; Belka, C; Borasio, G D

    2013-09-01

    Existential behavioural therapy (EBT) was developed to support informal caregivers of palliative patients in the last stage of life and during bereavement as a manualised group psychotherapy comprising six sessions. We tested the effectiveness of EBT on mental stress and quality of life (QOL). Informal caregivers were randomly assigned (1:1) to EBT or a treatment-as-usual control group using computer-generated numbers in blocks of 10. Primary outcomes were assessed with the Brief Symptom Inventory (subscales somatisation, anxiety and depression), the Satisfaction with Life Scale (SWLS), the WHOQOL-BREF and a numeric rating scale for QOL (QOL-NRS, range 0-10). Data were collected at baseline, pre-treatment, post-treatment and follow-ups after 3 and 12 months. Treatment effects were assessed with a multivariate analysis of covariance. Out of 160 relatives, 81 were assigned to EBT and 79 to the control group. Participants were 54.5 ± 13.2 years old; 69.9% were female. The multivariate model was significant for the pre-/post-comparison (p=0.005) and the pre-/12-month comparison (p=0.05) but not for the pre-/3-month comparison. Medium to large effects on anxiety and QOL (SWLS, WHOQOL-BREF, QOL-NRS) were found at post-treatment; medium effects on depression and QOL (QOL-NRS) emerged in the 12-month follow-up. No adverse effects of the intervention were observed. Existential behavioural therapy appears to exert beneficial effects on distress and QOL of informal caregivers of palliative patients. Further longitudinal evidence is needed to confirm these findings. Copyright © 2013 John Wiley & Sons, Ltd.

  10. Complementary and Alternative Medicine in Palliative Care: A Comparison of Data From Surveys Among Patients and Professionals.

    PubMed

    Muecke, Ralph; Paul, Magdalena; Conrad, Christina; Stoll, Christoph; Muenstedt, Karsten; Micke, Oliver; Prott, Franz J; Buentzel, Jens; Huebner, Jutta

    2016-03-01

    Many cancer patients use complementary and alternative medicine (CAM) during or after their therapy. Because little is known about CAM in palliative care, we conducted 2 surveys among patients and professionals in the palliative setting. Patients of a German Comprehensive Cancer Center were interviewed, and an independent online survey was conducted among members of the German Society for Palliative Care (DGP). In all, 25 patients and 365 professional members of the DGP completed the survey (9.8% of all members); 40% of the patients, 85% of the physicians, and 99% of the nurses claimed to be interested in CAM. The most important source of information for professionals is education, whereas for patients it is radio, TV, and family and friends. Most patients are interested in biological-based methods, yet professionals prefer mind-body-based methods. Patients more often confirm scientific evidence to be important for CAM than professionals. To improve communication, physicians should be trained in evidence for those CAM methods in which patients are interested. © The Author(s) 2015.

  11. A population-based observational study on the factors associated with the completion of palliative chemotherapy among patients with oesophagogastric cancer.

    PubMed

    Groene, Oliver; Crosby, Tom; Hardwick, Richard Henry; Riley, Stuart; Greenaway, Kimberley; Cromwell, David

    2015-03-04

    Palliative chemotherapy is routinely given to patients diagnosed with locally advanced or metastatic oesophagogastric (O-G) cancer. We examine which patients with O-G cancer in England receive palliative chemotherapy, and identify factors associated with treatment completion. A prospective population-based observational study. All English National Health Service (NHS) trusts diagnosing patients with O-G cancer. Data were prospectively collected on patients diagnosed with invasive epithelial cancer of the oesophagus or stomach between 1 October 2007 and 30 June 2009 in English NHS hospitals, and those who had palliative treatment intent. We calculated the proportion of patients with different characteristics (eg, age, sex, stage at diagnosis, performance status) starting palliative chemotherapy. Multiple logistic regression was used to identify characteristics associated with non-completion of chemotherapy. There were 9768 patients in the study whose treatment intent was palliative. Among these, 2313 (24%) received palliative chemotherapy. It was received by 51% of patients aged under 55 years but only 9% of patients aged 75 years or over. Overall, 917 patients (53%) completed their treatment among the 1741 patients for whom information on treatment completion was recorded. Treatment completion ranged from 50-60% for patients with good performance status but was under 35% for patients aged 55 years or older with poor performance status. Treatment completion was not associated with site of cancer, pretreatment stage, sex, comorbidities or histology. Completion rates of palliative chemotherapy in patients with O-G cancer are low and elderly patients with poor performance status are very unlikely to complete a palliative chemotherapy treatment. Clinicians and patients should consider this information when balancing potential (survival) benefits, toxicity of treatment and its effect on quality of life. Published by the BMJ Publishing Group Limited. For permission

  12. Is early integration of palliative care feasible and acceptable for advanced respiratory and gastrointestinal cancer patients? A phase 2 mixed-methods study.

    PubMed

    Costantini, Massimo; Apolone, Giovanni; Tanzi, Silvia; Falco, Francesco; Rondini, Ermanno; Guberti, Monica; Fanello, Silvia; Cavuto, Silvio; Savoldi, Luisa; Piro, Roberto; Mecugni, Daniela; Di Leo, Silvia

    2017-09-01

    There is evidence that early integration of palliative care improves quality of life, lowers spending and helps clarify preferences and goals for advanced cancer patients. Little is known about the feasibility and acceptability of early integration. Assessing feasibility of early integration of palliative care, and exploring concerns perceived and problems encountered by patients, relatives and oncologists. A phase 2 mixed-methods study ( ClinicalTrials.Gov :NCT02078700). Oncologists of two outpatient clinics offered a specialised palliative care intervention integrated with standard oncological care to all consecutive newly diagnosed metastatic respiratory/gastrointestinal cancer patients. We interviewed samples of patients, relatives and oncologists to explore strengths and weaknesses of the intervention. The intervention was proposed to 44/54 eligible patients (81.5%), 40 (90.1%) accepted, 38 (95.0%) attended the first palliative care visit. The intervention was completed for 32 patients (80.0%). It did not start for three (7.5%) and was interrupted for three patients who refused (7.5%). The Palliative Care Unit performed 274 visits in 38 patients (median per patient 4.5), and 24 family meetings with relatives of 16 patients. All patients and most relatives referred to the usefulness of the intervention, specifically for symptoms management, information and support to strategies for coping. Oncologists highlighted their difficulties in informing patients on palliative intervention, sharing information and coordinating patient's care with the palliative care team. Early integration of palliative care in oncological setting seems feasible and well accepted by patients, relatives and, to a lesser extent, oncologists. Some difficulties emerged concerning patient information and inter-professional communication.

  13. Music therapy to promote psychological and physiological relaxation in palliative care patients: protocol of a randomized controlled trial.

    PubMed

    Warth, Marco; Kessler, Jens; Koenig, Julian; Wormit, Alexander F; Hillecke, Thomas K; Bardenheuer, Hubert J

    2014-01-01

    Music therapy is one of the most frequently used complementary therapies in different palliative care settings. Despite its long tradition and high acceptance by other health-care professionals, evidence on the effectiveness of music therapy interventions for terminally ill patients is rare. Recent reviews and health-care reports consistently point out the need of music therapists to provide an evidence-based rationale for their clinical treatments in this field. Therefore, the present study evaluates the psychological and physiological response of palliative care patients to a standardized music therapy relaxation intervention in a randomized controlled trial. A sample of 84 participants from a palliative care unit in Heidelberg is randomized to either two sessions of music therapy or two sessions of a verbal relaxation exercise, each lasting 30 minutes. The music therapy sessions consist of live played monochord music and a vocal improvisation, the control group uses a prerecorded excerpt from the mindfulness-based stress reduction program containing no musical elements. Outcome measures include self-report data on subjective relaxation, well-being, pain intensity, and quality of life, as well as continuous recording of heart rate variability and blood volume pulse as indicators of autonomous nervous system functioning. To our knowledge, this study is the first clinical trial in Europe and one of very few randomized controlled trials worldwide to systematically examine the effects of music therapy in palliative care. German Clinical Trials Register - DRKS00006137.

  14. Proactive Case Finding To Improve Concurrently Curative and Palliative Care in Patients with End-Stage Liver Disease

    PubMed Central

    Schreibeis-Baum, Hannah; Pimstone, Neville; Asch, Steven M.; Robinson, Linda; Korlekar, Sheri; Lorenz, Karl; Nwajuaku, Tracy; Rosenfeld, Kenneth

    2015-01-01

    Abstract Background: Palliative care and preparation for liver transplantation are often perceived as conflicting for patients with end-stage liver disease (ESLD). We sought to improve both simultaneously through a case finding and care coordination quality improvement intervention. Methods: We identified patients with cirrhosis using validated ICD-9 codes and screened them for ESLD by assessing medical records at a VA hospital for either a model for end-stage liver disease (MELD) ≥14 or a diagnosis of hepatocellular carcinoma (HCC) between October 2012 and January 2013. A care coordinator followed veterans from the index hospitalization through April 2013 and encouraged treating physicians to submit liver transplant evaluation consults for all veterans with a MELD ≥14 and palliative care consults for all veterans with a MELD ≥20 or inoperable HCC. Results: We compared rates of consultation for 49 hospitalized veterans and compared their outcomes to 61 pre-intervention veterans. Veterans were more likely to be considered for liver transplantation (77.6% versus 31.1%, p<0.001) and receive palliative care consultation during the intervention period, although the latter finding did not reach statistical significance (62.5% versus 47.1%, p=0.38). Conclusions: Active case finding improved consideration for liver transplantation without decreasing palliative care consultation. PMID:25493552

  15. Palliative sedation in nursing anesthesia.

    PubMed

    Wolf, Michael T

    2013-04-01

    Palliative sedation is a technique of providing a sedative for end-of-life care to patients with intractable pain. The literature discusses the techniques and use of palliative sedation. Numerous articles have been written regarding the issues surrounding its use, but no literature has discussed the prescription or administration of palliative sedation by a nurse anesthetist. By understanding the concept and ethics involved in its use and providing nursing care that is theory based, the author argues that the involvement of nursing anesthesia is appropriate and within the scope of practice. Few other healthcare disciplines can provide the patient care and empirical knowledge that is imperative in the care of the dying patient. This article discusses the concept and ethics of palliative sedation and presents a case of providing palliative sedation to a terminally ill patient by an experienced nurse anesthetist. Palliative sedation should be understood, embraced, and utilized as an area of expertise suited for nursing anesthesia.

  16. Outpatient Palliative Care and Aggressiveness of End-of-Life Care in Patients with Metastatic Colorectal Cancer.

    PubMed

    Lee, Si Won; Jho, Hyun Jung; Baek, Ji Yeon; Shim, Eun Kyung; Kim, Hyun Mi; Ku, Ji Yeon; Nam, Eun Jung; Chang, Yoon-Jung; Choi, Hye Jin; Kim, Sun Young

    2017-01-01

    Palliative care in outpatient setting has been shown to promote better symptom management and transition to hospice care among patients with advanced cancer. Nevertheless, specialized palliative care is rarely provided at cancer centers in Korea. Herein, we aimed to assess aggressiveness of end-of-life care for patients with metastatic colorectal cancer according to the use of outpatient palliative care (OPC) at a single cancer center in Korea. We performed a retrospective medical record review for 132 patients with metastatic colorectal cancer who died between 2011 and 2014. Fifty patients used OPC (OPC group), while 82 patients did not (non-OPC group). Indicators of aggressiveness of end-of-life care including chemotherapy use, emergency department visits, hospitalization, and utilization of hospice care were analyzed according to the use of OPC. More patients in the OPC group were admitted to hospice than those in the non-OPC group (32% vs 17%, P = .047). The mean of inpatient days within 30 days of death was shorter for the OPC group than the non-OPC group (4.02 days vs 7.77 days, respectively, P = .032). There were no differences in the proportions of patients who received chemotherapy and visited the emergency department within 30 days from death. Among patients with metastatic colorectal cancer, OPC was associated with shorter inpatient days near death and greater hospice utilization. Further prospective studies are needed to evaluate the impact of OPC on end-of-life care in Korea.

  17. Coping, quality of life, depression, and hopelessness in cancer patients in a curative and palliative, end-of-life care setting.

    PubMed

    van Laarhoven, Hanneke W M; Schilderman, Johannes; Bleijenberg, Gijs; Donders, Rogier; Vissers, Kris C; Verhagen, Constans A H H V M; Prins, Judith B

    2011-01-01

    Coping strategies may be important factors influencing quality of life (QOL), depression, and hopelessness. However, most studies on this issue were performed in patients still undergoing anticancer treatment. Unknown is which coping strategies are of importance for palliative-cancer patients who no longer receive treatment. The objectives of this study were to assess coping strategies in curatively treated and palliative-cancer patients no longer receiving anticancer treatment and to examine the relation of these coping strategies with QOL, depression, and hopelessness. A descriptive research design was used. Ninety-two curative and 59 palliative patients filled out the COPE-Easy abbreviated version, the European Organisation for Research-and-Treatment of Cancer QOL-Questionnaire version 2.0, Beck Depression Inventory for Primary Care, and Beck Hopelessness Scale. In both curative and palliative patients, active coping strategies and acceptance were beneficial in terms of QOL, depression, and hopelessness, unlike avoidant coping strategies and venting of emotions. Palliative patients scored higher on the coping strategy, seeking moral support. For the outcome variable, emotional functioning, significant interactions were observed between the variable, curative/palliative care setting, and the coping strategy, seeking moral support. For the outcome variable, role functioning, significant interactions were observed between the variable, curative/palliative care setting, and the coping strategy, waiting. Coping strategies were significantly correlated to QOL, depression, and hopelessness. However, this correlation differed in the curative and palliative, end-of-life care setting. The observed relations between coping strategies, QOL, depression, and hopelessness give room to cognitive-behavioral nursing interventions. Specific attention is needed for differences in coping strategies between curative and palliative patients.

  18. Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff.

    PubMed

    Beck, Ingela; Olsson Möller, Ulrika; Malmström, Marlene; Klarare, Anna; Samuelsson, Henrik; Lundh Hagelin, Carina; Rasmussen, Birgit; Fürst, Carl Johan

    2017-09-11

    To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care. The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important. In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

  19. Palliative Surgery for Advanced Cancer: Identifying Evidence-Based Criteria for Patient Selection: Case Report and Review of Literature.

    PubMed

    Foster, Deshka; Shaikh, Mohammad F; Gleeson, Elizabeth; Babcock, Blake D; Ringold, Daniel; Bowne, Wilbur B

    2016-01-01

    Criteria for selecting patients with advanced cancer for palliative surgery (PS) remains poorly defined. Decision making for PS requires realistic treatment goals with well-defined criteria. Here we discuss a 71-year-old Jehovah's Witness with advanced stage renal cell carcinoma (RCC) who presented with profound anemia due to intractable bleeding from gastric metastasis. After repeated attempts with endoscopic and angiographic management, she underwent surgical palliation. Through this case, we developed 10-item evidence-based criteria for selecting patients for PS. The study objective was to provide a review of pertinent literature for PS and identify evidence-based criteria for patient selection. These criteria were relevant for selecting this patient with metastatic RCC and may prove beneficial for selecting advanced cancer patients for PS. A MEDLINE search revealed 175 publications relevant to PS. Among these, 17 articles defining patient selection criteria (PSC) were reviewed. A frequency-based analysis of each criterion was performed. Another search returned 30 cases of RCC gastric metastases from 25 published reports. Outcome analysis was determined by the Kaplan-Meier actuarial method. Ten criteria were identified: symptom control, prognosis, preoperative performance status, quality of life (QoL), tumor burden amenable to palliation, procedure-related morbidity and mortality, feasibility of nonsurgical therapies, anticipated hospitalization, requirement for additional palliation, and cost. This patient met all inclusion criteria and underwent a successful gastrectomy. Median survival for patients with RCC gastric metastasis was 20 months. This report illustrates an example of implementation of evidence-based criteria for selecting advanced cancer patients for PS. Validation of these criteria is warranted.

  20. Psychometric Properties of the Patients' Satisfaction Instrument FAMCARE-P13 in a Palliative Care Unit.

    PubMed

    Parpa, Efi; Galanopoulou, Natasa; Tsilika, Eleni; Galanos, Antonis; Mystakidou, Kyriaki

    2017-08-01

    To investigate the psychometric properties of the Greek 13-item measure of patients' satisfaction (FAMCARE-P13) in palliative care setting. A hundred patients completed the FAMCARE-P13. Exploratory factor analysis and confirmatory factor analysis (CFA) have been conducted. Two factors' solution was revealed from CFA. The questionnaire was administered to an initial validation sample and then for test-retest in a sample of 40 patients 3 days later. The Rosenberg Self-Esteem Scale measuring global self-esteem has been also used as a gold standard for construct validity. Subscale and known groups validity have also been tested for FAMCARE-P13s' validity. A reduced 13-item version of our measure (FAMCARE-P13) possessed 2-factor structure with high reliability. Patient satisfaction was correlated with physical distress, communication and relationship with health-care providers, and caregiver satisfaction. We recommend the use of the Greek FAMCARE-P13 to assess care satisfaction of patients with advanced-stage cancer.

  1. Prognostic value of parameters derived from white blood cell and differential counts in patients receiving palliative radiotherapy.

    PubMed

    Saito, Tetsuo; Toya, Ryo; Matsuyama, Tomohiko; Semba, Akiko; Matsuyama, Keiya; Oya, Natsuo

    2016-09-01

    The aim of the present study was to identify white blood cell (WBC) parameters with high prognostic value for the survival of patients receiving palliative radiotherapy. The prognostic value of seven parameters derived from WBC and differential counts was retrospectively evaluated in patients who underwent palliative radiotherapy between October, 2010 and June, 2013. The analyzed parameters were the total WBC count, the absolute and relative lymphocyte count, the absolute and relative neutrophil count, and the neutrophil-to-lymphocyte and lymphocyte-to-monocyte ratios. Following univariate analysis, multivariate Cox regression analysis was performed to adjust for gender, age, disease type, previous chemotherapy, previous radiotherapy and the levels of albumin and lactate dehydrogenase. A total of 220 patients with a median survival of 4.7 months were identified. All seven parameters were found to be statistically significant predictors of survival on univariate Cox regression analysis (P<0.05). Of these parameters, the low relative lymphocyte and high relative neutrophil counts were consistent predictors of poor survival in patients who received chemotherapy within 1 month prior to blood sampling (n=68) and in patients who received steroid treatment at the time of sampling (n=49). Multivariate Cox regression analysis revealed that the relative lymphocyte and neutrophil counts were independent predictors of survival in all 220 patients (P<0.05). In conclusion, relative lymphocyte and neutrophil counts were of high prognostic value for the survival of patients receiving palliative radiotherapy, even in those receiving medications that affect WBC and differential counts.

  2. Attitudes of members of the German Society for Palliative Medicine toward complementary and alternative medicine for cancer patients.

    PubMed

    Conrad, A C; Muenstedt, K; Micke, O; Prott, F J; Muecke, R; Huebner, J

    2014-07-01

    A high proportion of cancer patients use complementary and alternative medicine (CAM). In oncology, risks of CAM are side effects and interactions. Our aim was to conduct a survey on professionals in palliative care regarding attitudes toward CAM. An internet-based survey with a standardized questionnaire was sent to all members of the German Society for Palliative Care. The questionnaire collected data on attitude toward CAM and experiences. Six hundred and ninety questionnaires (19 %) were returned (49 % physicians, 35 % nurses, 3 % psychologists). Acceptance of CAM is high (92 % for complementary and 54 % for alternative medicine). Most participants had already been asked on CAM by patients (95 %) and relatives (89 %). Forty-four percent already had used complementary methods and 5 % alternative methods. Only 21 % think themselves adequately informed. Seventy-four percent would use complementary methods in a patient with advanced tumor, and 62 % would use alternative therapy in patients if there was no other therapy. Even from those who are skeptical 45 % would treat a patient with alternative methods. In order to inform patients on CAM and to further patients' autonomy, evidence on benefits and harms of CAM must be provided. As awareness of risks from CAM is low and critical appraisal especially of alternative medicine missing, but interest on information on CAM is high, experts should provide evidence-based recommendations for CAM in palliative care to members of different professions. This could be done by a curriculum focusing on the most often used CAM methods.

  3. Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams.

    PubMed

    Klarare, Anna; Rasmussen, Birgit H; Fossum, Bjöörn; Fürst, Carl Johan; Hansson, Johan; Hagelin, Carina Lundh

    2017-04-01

    Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

  4. Palliative Care Doula: an innovative model.

    PubMed

    Lentz, Judy C

    2014-01-01

    Walking the journey of serious illness is very difficult and stressful for patients and families. A universal principle of palliative care is caring for the patient/ family unit. This article introduces a model for the Palliative Care Doula for experienced and advanced practice palliative care nurses to support patients and families during the traumatic and vulnerable period of end-of-life care.

  5. Integrating palliative care into routine care of patients with heart failure: models for clinical collaboration.

    PubMed

    Lewin, Warren H; Schaefer, Kristen G

    2017-02-13

    Heart failure (HF) affects nearly 5.7 million Americans and is described as a chronic incurable illness carrying a poor prognosis. Patients living with HF experience significant symptoms including dyspnea, pain, anxiety, fatigue, and depression. As the illness advances into later stages, symptoms become more intense and refractory to standard treatments, leading to recurrent acute-care utilization and contributing to poor quality of life. Advanced HF symptoms have been described to be as burdensome, if not more than, those in cancer populations. Yet access to and provision of palliative care (PC) for this population has been described as suboptimal. The Institute of Medicine recently called for better access to PC for seriously ill patients. Despite guidelines recommending the inclusion of PC into the multidisciplinary HF care team, there is little data offering guidance on how to best operationalize PC skills in caring for this population. This paper describes the emerging literature describing models of PC integration for HF patients and aims to identify key attributes of these care models that may help guide future multi-site clinical trials to define best practices for the successful delivery of PC for patients living with advanced HF.

  6. Families’ Perspectives of Quality of Life in Pediatric Palliative Care Patients

    PubMed Central

    Gaab, Erin Mary

    2015-01-01

    Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed for themes using inductive thematic analysis. Participants included primary caregivers of children currently receiving PPC from a healthcare institution in California. We identified several factors that primary caregivers considered components of QoL for their children. The ability to communicate and adapt or be accepted underpinned the concept of QoL for families. QoL for PPC patients was defined by primary caregivers as being able to communicate in a respectful, controlled, physically- and socially-comfortable environment. Attempts to improve QoL should focus not only on pain and symptom control, but also on enhancing opportunities for children to communicate and maintain a sense of dignity. PMID:27417355

  7. Can a good death and quality of life be achieved for patients with terminal cancer in a palliative care unit?

    PubMed

    Leung, Kai-Kuen; Tsai, Jaw-Shiun; Cheng, Shao-Yi; Liu, Wen-Jing; Chiu, Tai-Yuan; Wu, Chih-Hsun; Chen, Ching-Yu

    2010-12-01

    Lack of evidence supporting the claim that palliative care can improve quality of life and promote good death in patients with terminal cancer. This study was designed to evaluate the change of quality of life and quality of death over time and between patients of long and short survival in a palliative care unit. Patient demography, cancer sites, Eastern Cooperative Oncology Group (ECOG) status were collected at admission. Quality of life, including physical and psychological symptoms, social support, and spirituality was assessed daily after admission. Quality of death was assessed by a Good Death Scale (GDS) at admission and retrospectively for 2 days before death. A total of 281 patients (52% women) were admitted and died in the study period. One hundred forty-five patients (51.6%) died within 3 weeks. Although those with short survival (<3 weeks) had more physical symptoms during the first week, there was no difference in quality of life dimensions at admission, at 1 week, and at 2 days before death between survival groups. Physical conditions deteriorated with time but other dimensions continued to improve until death. GDS and subdimensions continued to improve until death. Although those with long survival (≥3 weeks) have better scores for awareness, acceptance, timeliness, comfort, and GDS at admission, there was no difference between the two groups at 2 days before death. Under comprehensive palliative care, patients with terminal cancer can have good quality of life and experience a good death even with short survival.

  8. Unmet palliative care needs among patients with end-stage kidney disease: a national registry study about the last week of life.

    PubMed

    Axelsson, Lena; Alvariza, Anette; Lindberg, Jenny; Öhlén, Joakim; Håkanson, Cecilia; Reimertz, Helene; Fürst, Carl-Johan; Årestedt, Kristofer

    2017-09-20

    End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed. To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18.5 or N18.9), during 2011 and 2012 were selected. 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44% respectively were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/in-patient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Even if death is expected, the majority of patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. Copyright © 2017. Published by Elsevier Inc.

  9. Pretreatment neutrophil-to-lymphocyte ratio and its dynamic changes are associated with the overall survival in advanced cancer patients undergoing palliative care

    PubMed Central

    Zhao, Weiwei; Wu, Zhenyu; Li, Yintao; Jia, Huixun; Chen, Menglei; Gu, Xiaoli; Liu, Minghui; Zhang, Zhe; Wang, Peng; Cheng, Wenwu

    2016-01-01

    The objective of this study was to investigate the prognostic value of pretreatment NLR and its dynamic changes responsive to palliative care in advanced cancer patients. The study was retrospectively assessed in 378 consecutive advanced cancer patients receiving palliative care, and in an extended follow-up study of 106 of those patients. The cutoff value of pretreatment NLR was determined to be 3.0. In the 378 advanced cancer patients, 89 had pretreatment NLR ≤ 3, and 289 had an NLR > 3. Univariate and multivariate analyses showed that tumor stage, palliative care, albumin level, and pretreatment NLR (HR: 1.514, 95% CI: 1.125~2.038, P = 0.006) were independent prognostic indicators of OS. Moreover, in the follow-up cohort of 106 readmitted patients, 43 patients achieved a decreased NLR after palliative care, while the remaining 63 patients showed an increased NLR. Univariate and multivariate analyses showed that an increase in NLR was significantly associated with a poor survival (HR: 2.506, 95% CI: 1.474~4.261, P = 0.001). In conclusion, pretreatment NLR and changes in NLR independently predicted OS in advanced cancer patients undergoing palliative care. Incorporating NLR into clinical practice may better inform the prognosis and therapy decisions of advanced cancer patients in palliative settings. PMID:27510632

  10. Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer.

    PubMed

    O'Hara, Ross E; Hull, Jay G; Lyons, Kathleen D; Bakitas, Marie; Hegel, Mark T; Li, Zhongze; Ahles, Tim A

    2010-12-01

    Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients' quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden. Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents' caregivers were asked to complete an after-death interview regarding the quality of care that the patient received. There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood. Caregivers who perceived that patients had unmet needs at end of life reported higher objective burden, and those who perceived that patients were not treated with respect reported higher demand burden. The results indicate that a successful patient-focused intervention did not have a similar beneficial effect on caregiver burden. Future interventions should focus on caregivers as well as patients, with particular attention to caregivers' perceptions of patient care, and seek to change both negative and positive effects of informal caregiving.

  11. Effects of Early Integrated Palliative Care on Caregivers of Patients with Lung and Gastrointestinal Cancer: A Randomized Clinical Trial.

    PubMed

    El-Jawahri, Areej; Greer, Joseph A; Pirl, William F; Park, Elyse R; Jackson, Vicki A; Back, Anthony L; Kamdar, Mihir; Jacobsen, Juliet; Chittenden, Eva H; Rinaldi, Simone P; Gallagher, Emily R; Eusebio, Justin R; Fishman, Sarah; VanDusen, Harry; Li, Zhigang; Muzikansky, Alona; Temel, Jennifer S

    2017-09-11

    The family and friends (caregivers) of patients with advanced cancer often experience tremendous distress. Although early integrated palliative care (PC) has been shown to improve patient-reported quality of life (QOL) and mood, its effects on caregivers' outcomes is currently unknown. We conducted a randomized trial of early PC integrated with oncology care versus oncology care alone for patients who were newly diagnosed with incurable lung and noncolorectal gastrointestinal cancers and their caregivers. The early PC intervention focused on addressing the needs of both patients and their caregivers. Eligible caregivers were family or friends who would likely accompany patients to clinic visits. The intervention entailed at least monthly patient visits with PC from the time of diagnosis. Caregivers were encouraged, but not required, to attend the palliative care visits. We used the Hospital Anxiety and Depression Scale (HADS) and Medical Health Outcomes Survey Short-Form to assess caregiver mood and QOL. Two hundred seventy-five caregivers (intervention n = 137; control n = 138) of the 350 patients participated. The intervention led to improvement in caregivers' total distress (HADS-total adjusted mean difference = -1.45, 95% confidence interval [CI] -2.76 to -0.15, p = .029), depression subscale (HADS-depression adjusted mean difference = -0.71, 95% CI -1.38 to -0.05, p = .036), but not anxiety subscale or QOL at week 12. There were no differences in caregivers' outcomes at week 24. A terminal decline analysis showed significant intervention effects on caregivers' total distress (HADS-total), with effects on both the anxiety and depression subscales at 3 and 6 months before patient death. Early involvement of PC for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. This work demonstrates that the benefits of early, integrated PC models in oncology care extend beyond

  12. The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study.

    PubMed

    Veigh, Clare Mc; Reid, Joanne; Larkin, Philip; Porter, Sam; Hudson, Peter

    2017-07-11

    Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.

  13. Effectiveness of the palliative care 'Availability, Current issues and Anticipation' (ACA) communication training programme for general practitioners on patient outcomes: a controlled trial.

    PubMed

    Slort, Willemjan; Blankenstein, Annette H; Schweitzer, Bart P M; Knol, Dirk L; van der Horst, Henriëtte E; Aaronson, Neil K; Deliens, Luc

    2014-09-01

    Although communicating effectively with patients receiving palliative care can be difficult, it may contribute to maintaining or enhancing patients' quality of life. Little is known about the effect of training general practitioners in palliative care-specific communication. We hypothesized that palliative care patients of general practitioners exposed to the 'Availability, Current issues and Anticipation' communication training programme would report better outcomes than patients of control general practitioners. To evaluate the effectiveness of the Availability, Current issues and Anticipation training programme for general practitioners on patient-reported outcomes. In a controlled trial, general practitioners followed the Availability, Current issues and Anticipation programme or were part of the control group. Patients receiving palliative care of participating general practitioners completed the Palliative Care Outcome Scale, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative, the Rest & Peace Scale, the Patient Satisfaction Questionnaire-III and the Availability, Current issues and Anticipation Scale, at baseline and 12 months follow-up. We analysed differences between groups using linear mixed models. ISRCTN56722368. General practitioners who attended a 2-year Palliative Care Training Course in the Netherlands. Questionnaire data were available for 145 patients (89 in intervention and 56 in control group). We found no significant differences over time between the intervention and control groups in any of the five outcome measures. Ceiling effects were observed for the Rest & Peace Scale, Patient Satisfaction Questionnaire-III and Availability, Current issues and Anticipation Scale. General practitioner participation in the Availability, Current issues and Anticipation training programme did not have a measurable effect on any of the outcomes investigated. Patients reported high levels of

  14. Impact on Caregiver Burden of a Patient-Focused Palliative Care Intervention for Patients with Advanced Cancer

    PubMed Central

    O’Hara, Ross E.; Hull, Jay G.; Lyons, Kathleen D.; Bakitas, Marie; Hegel, Mark T.; Li, Zhongze; Ahles, Tim A.

    2011-01-01

    Objective Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients’ quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden. Methods Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents’ caregivers were asked to complete an after death interview regarding the quality of care that the patient received. Results There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood. Caregivers who perceived that patients had unmet needs at end-of-life reported higher objective burden, and those who perceived that patients were not treated with respect reported higher demand burden. Significance of results The results indicate that a successful patient-focused intervention did not have a similar beneficial effect on caregiver burden. Future interventions should focus on caregivers as well as patients, with particular attention to caregivers’ perceptions of patient care, and seek to change both negative and positive effects of informal caregiving. PMID:20875202

  15. Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: benefits and burdens.

    PubMed

    Maloney, Cristine; Lyons, Kathleen Doyle; Li, Zhongze; Hegel, Mark; Ahles, Tim A; Bakitas, Marie

    2013-04-01

    ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known about how participants experience early palliative care and the benefits and burdens of participating in a palliative care clinical trial. To gain a deeper understanding of participants' perspectives of the intervention and palliative care trial participation. A qualitative descriptive study using thematic analysis to determine benefits and burdens of a new palliative care intervention and trial participation. Of the 72 participants who were alive when the study commenced, 53 agreed to complete an in-depth, semi-structured interview regarding the ENABLE II intervention and clinical trial participation. Participants' perceptions of intervention benefits were represented by four themes: enhanced problem-solving skills, better coping, feeling empowered, and feeling supported or reassured. Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve. The benefits of the intervention and the positive aspects of trial participation outweighed trial "burdens". This study raises additional important questions relevant to future trial design and intervention development: when should a palliative care intervention be initiated and what aspects of self-care and healthy living should be offered in addition to palliative content for advanced cancer patients when they are feeling well?

  16. Palliative Gastrectomy Prolongs Survival of Metastatic Gastric Cancer Patients with Normal Preoperative CEA or CA19-9 Values: A Retrospective Cohort Study

    PubMed Central

    Chiu, Chang-Fang; Yang, Horng-Ren; Yang, Mei-Due; Jeng, Long-Bin; Yang, Tse-Yen; Sargeant, Aaron M.

    2016-01-01

    Background. Palliative gastrectomy has been suggested to improve survival of patients with metastatic gastric cancer, but limitations in study design and availability of robust prognostic factors have cast doubt on the overall merit of this procedure. Methods. The characteristics and clinical outcomes of 173 patients diagnosed between 2008 and 2012 were analyzed to determine the value of palliative gastrectomy and to identify potential prognostic factors. Results. Median overall patient survival was 6.5 months. To attenuate potential selection bias, patients with adequate performance and survival time of ≥ 2 months since diagnosis were included for risk factor analysis (n = 137). The median overall survival was longer for patients who were younger than 60 years, had better performance status (8.7 versus 6.4 months, P = 0.015), received systemic chemotherapy, or had palliative gastrectomy in univariate analyses. Gastrectomy (P = 0.002) remained statistically significant in multivariate analyses. Subgroup analysis showed that patients aged < 60 years, CEA < 5 ng/mL or CA19-9 < 35 U/mL, obtained a survival advantage from palliative gastrectomy. In fact, palliative gastrectomy doubled overall survival for patients who had normal CEA and/or normal CA19-9. Conclusions. Palliative gastrectomy prolongs the survival of metastatic gastric cancer patients with normal CEA and/or CA19-9 level at the time of diagnosis. PMID:27990157

  17. Palliative Gastrectomy Prolongs Survival of Metastatic Gastric Cancer Patients with Normal Preoperative CEA or CA19-9 Values: A Retrospective Cohort Study.

    PubMed

    Chiu, Chang-Fang; Yang, Horng-Ren; Yang, Mei-Due; Jeng, Long-Bin; Yang, Tse-Yen; Sargeant, Aaron M; Bai, Li-Yuan

    2016-01-01

    Background. Palliative gastrectomy has been suggested to improve survival of patients with metastatic gastric cancer, but limitations in study design and availability of robust prognostic factors have cast doubt on the overall merit of this procedure. Methods. The characteristics and clinical outcomes of 173 patients diagnosed between 2008 and 2012 were analyzed to determine the value of palliative gastrectomy and to identify potential prognostic factors. Results. Median overall patient survival was 6.5 months. To attenuate potential selection bias, patients with adequate performance and survival time of ≥ 2 months since diagnosis were included for risk factor analysis (n = 137). The median overall survival was longer for patients who were younger than 60 years, had better performance status (8.7 versus 6.4 months, P = 0.015), received systemic chemotherapy, or had palliative gastrectomy in univariate analyses. Gastrectomy (P = 0.002) remained statistically significant in multivariate analyses. Subgroup analysis showed that patients aged < 60 years, CEA < 5 ng/mL or CA19-9 < 35 U/mL, obtained a survival advantage from palliative gastrectomy. In fact, palliative gastrectomy doubled overall survival for patients who had normal CEA and/or normal CA19-9. Conclusions. Palliative gastrectomy prolongs the survival of metastatic gastric cancer patients with normal CEA and/or CA19-9 level at the time of diagnosis.

  18. What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care.

    PubMed

    Kestenbaum, Allison; Shields, Michele; James, Jennifer; Hocker, Will; Morgan, Stefana; Karve, Shweta; Rabow, Michael W; Dunn, Laura B

    2017-07-20

    Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce. The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"); and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Patients with advanced cancer (n=31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale (ESAS), Steinhauser spirituality, Brief Religious Coping (Brief RCOPE), Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies - Depression (CES-D, 10-item), and Spielberger State Anxiety Inventory (STAI-S). From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping and an increase in Fatalism (a subscale of the Mini-MAC). Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs, as well as religious and general coping in patients with serious illnesses. Copyright © 2017. Published by Elsevier Inc.

  19. Community palliative care clinical nurse specialists: a descriptive study of nurse-patient interactions.

    PubMed

    Howell, Debra; Hardy, Beth; Boyd, Caroline; Ward, Chris; Roman, Eve; Johnson, Miriam

    2014-05-01

    With an ageing population and changes to the UK process of commissioning health-care services, it is important that the role of the community palliative care clinical nurse specialist (CPC-CNS) is better understood. This study aimed to describe CPC-CNS activities during interactions with patients. Four CPC-CNSs were observed and audio-recorded during interactions with 34 patients. The data was assessed qualitatively using thematic analysis. An enormous breadth of activities were observed, within a framework of assessment, planning, intervention, and evaluation. Cross-cutting themes were real-time decision making, leadership, ability to respond to and coordinate complex and varied situations, and communication techniques. Data saturation was not achieved. CPC-CNSs provide multifaceted care, requiring wide-ranging knowledge to enable them to act as liaison points in a complex health service, respond independently to the fluctuating needs of patients, and provide effective advance care planning, particularly to those with advanced disease, multi-morbidity, and frailty.

  20. Meanings of the phenomenon of fatigue as narrated by 4 patients with cancer in palliative care.

    PubMed

    Lindqvist, Olav; Widmark, Anders; Rasmussen, Birgit H

    2004-01-01

    The disabling experience of fatigue suffered in connection with incurable cancer is an area within nursing that has generated only limited research interest. The need for a change in focus is presented in the literature: from treating the symptom itself to facilitating living with the fatigue caused by a life-threatening disease. This implies that helping to alleviate fatigue must start from the patients' own understanding and interpretation of this experience. Our study attempts to achieve this understanding through illuminating the meanings of fatigue as experienced by 4 patients with cancer in palliative care. The research interviews were analyzed using a phenomenological-hermeneutic approach inspired by the philosophy of Ricoeur. Our findings indicate a world in which one meaning of fatigue connected with incurable cancer is a lived bodily experience of approaching death. Comprehending fatigue in this way allows us to understand the paradoxes we found in the text, such as struggling in vain against fatigue, and hoping to overcome fatigue but expecting failure. The paradoxes represent a struggle between body and mind, between bodily experiences and intellectual understanding, and have important implications for how we communicate with patients about fatigue.

  1. The use of On-Board Imaging to plan and deliver palliative radiotherapy in a single cohesive patient appointment.

    PubMed

    Ford, Andriana; Bydder, Sean; Ebert, Martin Andrew

    2011-12-01

    To develop and assess a method of palliative radiotherapy utilising a kilovoltage imaging system incorporated with a linear accelerator. The conventionally separate procedures of simulation, planning and treatment were merged into a single appointment on a linear accelerator. The process was tested using a humanoid phantom and hypothetical treatment scenarios. A clinical investigation was then undertaken for patients requiring palliative radiotherapy. A total of 10 treatment sites were simulated, planned and treated using the online approach. Each step was timed for both the phantom and patient treatments and was compared with a simulation process involving a separate appointment on a conventional simulator. The contrast and resolution achievable with the linear accelerator-based imaging system was found to be comparable with a conventional simulator. Bony anatomy was plainly visible and suitable for target definition. The mean total treatment time for the humanoid phantom (n = 5) was 21.4 ± 0.9 (standard error) mins. The mean total treatment time for actual patients (n = 10) was 25.7 ± 1.6 mins (the mean simulation, planning and treatment times were 11.0 ± 0.5 mins, 14.5 ± 1.0 mins and 3.6 ± 0.2 mins, respectively). This study demonstrated that palliative radiotherapy treatments can be simulated, planned and treated in a single cohesive patient appointment, using an online approach that is technically comparable with the conventional simulation method. This approach has the potential to expedite palliative radiotherapy service delivery and reduce resource burdens by minimising the number of patient appointments and wait times between appointments.

  2. Palliative care content on cancer center websites.

    PubMed

    Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

    2017-10-09

    Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

  3. Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong.

    PubMed

    Ho, Andy Hau Yan; Chan, Cecilia Lai Wan; Leung, Pamela Pui Yu; Chochinov, Harvey Max; Neimeyer, Robert A; Pang, Samantha Mei Che; Tse, Doris Man Wah

    2013-07-01

    the empirical Dignity Model has profoundly influenced the provision of palliative care for older terminally ill patients in the West, as it provides practical guidance and intervention strategies for promoting dignity and reducing distress at the end-of-life. to examine the concept of 'living and dying with dignity' in the Chinese context, and explore the generalisability of the Dignity Model to older terminal patients in Hong Kong. using qualitative interviews, the concept of dignity was explored among 16 older Chinese palliative care patients with terminal cancer. Framework analysis with both deductive and inductive methods was employed. the three major categories of themes of the Dignity Model were broadly supported. However, the subtheme of death anxiety was not supported, while two subthemes of generativity/legacy and resilience/fighting spirit manifested differently in the Chinese context. Furthermore, four new emergent themes have been identified. They include enduring pain, moral transcendence, spiritual surrender and transgenerational unity. these findings highlight both a cultural and a familial dimension in the construct of dignity, underline the paramount importance of cultural awareness and competence for working with ethnically diverse groups, and call for a culturally sensitive and family oriented approach to palliative care interventions with older Chinese terminal patients.

  4. Palliative re-irradiation for in-field recurrence after definitive radiotherapy in patients with primary lung cancer.

    PubMed

    Ebara, Takeshi; Tanio, Noriko; Etoh, Takashi; Shichi, Izumi; Honda, Atsuro; Nakajima, Nobuaki

    2007-01-01

    To evaluate the efficacy and toxicity of palliative re-irradiation for in-field recurrence of primary lung cancer after radiotherapy. Forty-four patients with locally recurrent lung cancer after radiotherapy were retreated with external beam radiation therapy. To evaluate palliative effectiveness, 31 symptoms in 25 patients were analyzed, while all patients were analyzed to evaluate pulmonary toxicity. The median time between prior and secondary irradiation was 12.6 months. Prior radiation doses ranged from 50 to 70 Gy and retreatment ranged from 30 to 60 Gy. The median survival after re-irradiation was 6.5 months. After treatment 74% (23 out of 31) of the symptoms had improvement or complete resolution. After re-irradiation, acute Grade 2 and 3 pulmonary toxicity were recognized in 3 patients each. No significant factors were observed regarding pulmonary toxicity. Re-irradiation with moderate doses for recurrent lung cancer after definitive radiotherapy is promising in palliating the symptoms and shows acceptable toxicity.

  5. Patient and Caregiver Opinions of Motivational Interviewing Techniques In Role-Played Palliative Care Conversations: A Pilot Study

    PubMed Central

    Pollak, Kathryn I.; Jones, Jacqueline; Lum, Hillary D.; De La Cruz, Scott; Felton, Susanne; Gill, Arvin; Kutner, Jean S.

    2015-01-01

    Context Although many have examined the role of motivational interviewing (MI) in diverse health care encounters, no one has explored whether patients and caregivers facing serious illnesses identify specific MI techniques as helpful. Objectives The aim of this pilot study was to describe how patients and caregivers perceived MI techniques in palliative care role-play encounters. Methods About 21 patients and caregivers participated in a role-play encounter where we asked the participant to act out being ambivalent or reluctant regarding the goals of care decision. The participant met with either an MI-trained physician or a physician who was not trained in MI (usual care). After the simulated encounter, we conducted cognitive interviews (“think-aloud” protocol) asking participants to identify “helpful” or “unhelpful” things physicians said. Participants also completed a perceived empathy instrument as a fidelity test of the MI training of the physician. Results Qualitative analyses revealed that participants independently identified the following helpful communication elements that are consistent with core MI techniques: reflection and validation of values, support of autonomy and flexibility, and open questions acting as catalysts for discussion. Participants rated the MI-trained physician slightly higher on the perceived empathy scale. Conclusion This pilot study represents the first exploration of patient and caregiver perceptions of helpful techniques in palliative care conversations. Use of MI techniques shows promise for improving palliative care discussions. PMID:25701055

  6. Opinions about the new law on end-of-life issues in a sample of french patients receiving palliative care.

    PubMed

    Boulanger, Augustin; Chabal, Théo; Fichaux, Marie; Destandau, Mireille; La Piana, Jean Marc; Auquier, Pascal; Baumstarck, Karine; Salas, Sébastien

    2017-01-21

    In February 2nd 2016, the French government enacted the Claeys-Leonetti law that forbade euthanasia and established the right to deep and continuous sedation for end-of-life patients. Moreover, the law also obliges clinicians to abide by any advance directives regarding treatment and investigation, except in cases where they are "obviously inappropriate" in a given medical situation, or in cases of emergency, in order to allow medical staff to take time to assess the patient's situation. Artificial feeding and hydration are considered as treatment. The aim of this report is to investigate individuals receiving palliative care about their opinion about euthanasia, about advance directives, about the right to deep and continuous sedation, and the right to stopping artificial feeding and hydration. The study was an opinion survey conducted among patients treated in two different palliative care institutions: a palliative care unit at the University Hospital (Timone, Marseille, France) and a non-profit association palliative care home ("La Maison", Gardanne, France). Face-to-face interviews were performed by two investigators. The survey included sociodemographics, clinical data, and opinions about euthanasia, deep and continuous sedation, stopping artificial feeding and hydration, and advance directives. Forty patients were interviewed. The mean age was 59.8 years (standard deviation 12). Fifty three percent reported opposition to legalized euthanasia. Eighty three percent were in favour of the right to deep and continuous sedation in patients with refractory pain, 75% when it concerns a patient unable to express their wishes, and 68% when the patient decides to stop vital treatment. Fifty eight percent reported that artificial nutrition and hydration should be considered as care. Fifty eight percent of the patients interviewed would like to see doctors follow the express wishes contained in advance care directives and 53% that advance directives should be subject to

  7. Prospective Study on Music Therapy in Terminally Ill Cancer Patients during Specialized Inpatient Palliative Care.

    PubMed

    Kordovan, Sarah; Preissler, Pia; Kamphausen, Anne; Bokemeyer, Carsten; Oechsle, Karin

    2016-04-01

    This study was a prospective evaluation of feasibility, acceptance, and potential beneficial effects of music therapy in terminally ill cancer patients on a specialized palliative care inpatient ward. Intervention had to consist of at least two sessions, but frequency and duration was left to the patients` decision. Different music therapy methods were offered to the patient at the beginning of every session. Patients rated their subjective benefit. Disease-related and sociodemographic factors were considered as potentially influencing factors. A total of 166 music therapy sessions were performed with 41 patients (average, 4; range, 2-10). Average session duration was 41 minutes (range, 20-70). Most favored methods were therapeutic conversation in 84% of sessions; listening to relaxing music, 39%; playing an instrument, 31%; and music-lead imagination, 11%. Receptive music therapy was applied in 45%, active forms in 25%, a combination of both in 7%, and therapeutic conversation only in 23%. Music therapy was rated to be "helpful" in 68%. Positive effects were significantly associated with frequency (p = 0.009) and duration (p = 0.040), living in a partnership (p = 0.017), having children (p = 0.035), psycho-oncologic therapy (p = 0.043), experience with music therapy (p = 0.007), role of music in life (p = 0.035), playing an instrument (p = 0.021), and singing regularly (p = 0.003). Music therapy techniques, especially receptive methods, are feasible and well accepted in terminally ill cancer patients. Therapeutic conversation seems to play an important role. Frequency and duration of music therapy, previous experience with music and music therapy, as well as sociodemographic factors influence positive effects of music therapy.

  8. Fatigue and its associated psychosocial factors in cancer patients on active palliative treatment measured over time.

    PubMed

    Peters, Marlies E W J; Goedendorp, Martine M; Verhagen, Constans A H H V M; Bleijenberg, Gijs; van der Graaf, Winette T A

    2016-03-01

    Fatigue is a frequently reported symptom by patients with advanced cancer, but hardly any prospective information is available about fatigue while on treatment in the palliative setting. In a previous cross-sectional study, we found several factors contributing to fatigue in these patients. In this study, we investigated the course of fatigue over time and if psychosocial factors were associated with fatigue over time. Patients on cancer treatment for incurable solid tumors were observed over 6 months. Patients filled in the Checklist Individual Strength monthly to measure the course of fatigue. Baseline questionnaires were used to measure disease acceptance, anxiety, depressive mood, fatigue catastrophizing, sleeping problems, discrepancies in social support, and self-reported physical activity for their relation with fatigue over time. At baseline 137 patients and after 6 months 89 patients participated. The mean duration of participation was 4.9 months. At most time points, fatigue scores were significantly higher in the group dropouts in comparison with the group participating 6 months (completers). Overall fatigue levels remained stable over time for the majority of participants. In the completers, 42% never experienced severe fatigue, 29% persisted being severely fatigued, and others had either an increasing or decreasing level. Of the investigated factors, low reported physical activity and non-acceptance of cancer were associated significantly to fatigue. A substantial number of participants never experienced severe fatigue and fatigue levels remained stable over time. For those who do experience severe fatigue, non-acceptance of having incurable cancer and low self-reported physical activity may be fatigue-perpetuating factors.

  9. Adaptation of the Palliative Prognostic Index in patients with advanced medical conditions.

    PubMed

    Nieto Martín, M D; Bernabeu Wittel, M; de la Higuera Vila, L; Mora Rufete, A; Barón Franco, B; Ollero Baturone, M

    2013-10-01

    To analyze the accuracy of the Palliative Prognostic Index (PPI) in patients with advanced medical diseases and to recalibrate it in order to adapt it to the profile of these patients. Multicenter, prospective, observational study that included patients with one or more advanced medical diseases. Calibration (Hosmer-Lemeshow goodness of fit) and discriminative power (ROC and area under the curve [AUC]) of PPI were analyzed in the prediction of mortality at 180 days. Recalibration was carried out by analyzing the scores on the PPI of each quartile upward of dying probability. Accuracy of PPI was compared with that obtained for the Charlson index. Overall mortality of the 1.788 patients was 37.5%. Calibration in the prediction of mortality was good (goodness of fit with P=.21), the prognostic probabilities ranging from 0-0,25 in the first quartile of risk and from 0,48-0,8 in the last quartile. Discriminative power was acceptable (AUC=69; P=.0001). In recalibrated groups, mortality of patients with 0/1-2/2.5-9.5/≥10 points was 13, 23, 39 and 68%, respectively. Sensitivity (S) and negative predicative value (NPF) of the cutoff point above 0 points were 96 and 87%, respectively; while specificity (sp) and positive predictive value (PPV) of the cutoff point above 9.5 points were 95 and 68%. Calibration of the Charlson index was good (P=.2), and its discriminative power (AUC=.52; P=.06) was suboptimal. PPI can be a useful tool in predicting 6-month survival of patients with advanced medical conditions. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  10. A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project.

    PubMed

    Carlsson, Maria E

    2014-04-01

    One prerequisite for palliative home care is the relatives' participation in the care. The relatives' situation in palliative home care is unique, as they support the sick person and also have a great need for support themselves. The aim of this care development project was to develop and implement separate structured conversations (SSC) with relatives of patients of an advanced palliative home care team (APHCT). During the project, 61 conversations were held and 55 relatives answered a questionnaire. The questionnaire, eight semistructured interviews with relatives, and three focus-group discussions with nurses constitute the material for the evaluation. Relatives have difficulties separating the SSC from the APHCT's care as a whole. They underline that the SSC was a part of an ongoing process. They also emphasize the value of having a conversation of their own in which the patient was absent, and in which the focus was on the relative's situation. For some, the conversation took place at the APHCT premises. The advantages of that were more privacy and the opportunity to walk around the inpatient palliative care units. The main problem during the project was conducting the SSC soon after the patient was enrolled with the APHCT. Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their willingness to provide care in the home, and mapping out their situation and social network, is a way to support both the relatives and the patients. The common structure of the conversations facilitated the assessment of the relatives' situation but did not hinder individualization according to the relatives' needs. The assumption is that all relatives should be offered a conversation.

  11. Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study.

    PubMed

    Krug, Katja; Miksch, Antje; Peters-Klimm, Frank; Engeser, Peter; Szecsenyi, Joachim

    2016-01-15

    Family caregivers play a key role in palliative care at home, and understanding the interdependencies in the constellation of patient, family caregivers and service providers is important. As few longitudinal studies have examined the influence of patient quality of life (QoL) in palliative care on burden of family caregivers, the aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers that need consideration in patient management. Palliative patients with cancer in primary care evaluated their QoL (Quality of Life Questionnaire Core 15 Palliative Care, QLQ-C15-PAL). They were assessed monthly for an interval of 6 months or until death of the patient. Family caregivers reported the burden they perceived while supporting the patient (Short form of the Burden Scale for Family Caregivers, BSFC). Longitudinal data were analysed for all patients with at least 3 available assessments, considering the most recent data for participants with more than 3 assessments. Changes in patient QoL were analysed using the Friedman test. In a stepwise regression analysis, influences of change in patient QoL on changing caregiver burden were investigated. One hundred patients (63 men, 37 women; average age: 68 years) were enrolled in the study. The most common primary diagnoses were colon, lung or breast cancer. In 58 cases, assessments were available from both patients and caregivers. Patients reported overall quality of life increasing towards end of life, although reporting that physical functioning deteriorated. Symptoms of pain and fatigue bothered patients most. Caregiver burden was moderate and on average did not change over time. In a stepwise regression model, the difference in emotional functioning and the difference in dyspnoea showed an influence on the development of caregiver burden (explained variance of 19.3%). Patients' dyspnoea, feelings of depression and anxiety impacted on the perceived burden of family

  12. Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy

    PubMed Central

    2012-01-01

    Background Patients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations. Methods/design This mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of ≤0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context. Discussion The data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa. ClinicalTrials.gov Identifier: NCT01608802 PMID:23130740

  13. Palliative Care Teams' Cost-Saving Effect Is Larger For Cancer Patients With Higher Numbers Of Comorbidities.

    PubMed

    May, Peter; Garrido, Melissa M; Cassel, J Brian; Kelley, Amy S; Meier, Diane E; Normand, Charles; Stefanis, Lee; Smith, Thomas J; Morrison, R Sean

    2016-01-01

    Patients with multiple serious conditions account for a high proportion of health care spending. Such spending is projected to continue to grow substantially as a result of increased insurance eligibility, the ever-rising cost of care, the continued use of nonbeneficial high-intensity treatments at the end of life, and demographic changes. We evaluated the impact of palliative care consultation on hospital costs for adults with advanced cancer, excluding those with dementia. We found that compared to usual care, the receipt of a palliative care consultation within two days of admission was associated with 22 percent lower costs for patients with a comorbidity score of 2-3 and with 32 percent lower costs for those with a score of 4 or higher. Earlier consultation was also found to be systematically associated with a larger cost-saving effect for all subsamples defined by multimorbidity. Given ongoing workforce shortages, targeting early specialist palliative care to hospitalized patients with advanced cancer and higher numbers of serious concurrent conditions could improve care while complementing strategies to curb the growth of health spending. Project HOPE—The People-to-People Health Foundation, Inc.

  14. Development and validation of a new tool for the assessment and spiritual care of palliative care patients.

    PubMed

    Benito, Enric; Oliver, Amparo; Galiana, Laura; Barreto, Pilar; Pascual, Antonio; Gomis, Clara; Barbero, Javier

    2014-06-01

    Spiritual assessment tools and interventions based on holistic approaches are needed to promote healing. Such tools must be adapted to the wide cultural backgrounds of contemporary Western society. To develop and validate a new brief measure, simultaneously featuring clinical applicability and adequate psychometric properties. The tool uses six initial questions to establish a climate of trust with patients before they complete an eight-item, five-point Likert scale. The questionnaire is based on a model of spirituality generated by the Spanish Society of Palliative Care (SECPAL) Task Force on Spiritual Care (Grupo de Espiritualidad de la SECPAL), which aims to recognize, share, and assess the spiritual resources and needs of palliative care patients. Multidisciplinary professionals from 15 palliative care teams across Spain interviewed 108 patients using the Grupo de Espiritualidad de la SECPAL questionnaire. Confirmatory factor analysis techniques were used to study the new tool factor structure and reliability. Additionally, concurrent criterion validity coefficients were estimated considering spiritual well-being, anxiety, depression, resilience, and symptoms. Descriptive statistics on questionnaire applicability were reported. Analyses supported a three-factor structure (intrapersonal, interpersonal, transpersonal) with an underlying second-order factor representing a spirituality construct. Adequate reliability results and evidence for construct validity were obtained. The new questionnaire, based on empirical research and bedside experience, showed good psychometric properties and clinical applicability. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  15. Palliative Care Teams’ Cost-Saving Effect Is Larger For Cancer Patients With Higher Numbers Of Comorbidities

    PubMed Central

    May, Peter; Garrido, Melissa M.; Cassel, J. Brian; Kelley, Amy S.; Meier, Diane E.; Normand, Charles; Stefanis, Lee; Smith, Thomas J.; Morrison, R. Sean

    2016-01-01

    Patients with multiple serious conditions account for a high proportion of health care spending. Such spending is projected to continue to grow substantially because of increased insurance eligibility, the ever-rising cost of care, the continued use of nonbeneficial high-intensity treatments at the end of life, and demographic changes. We evaluated the impact of palliative care consultation on hospital costs for adults with advanced cancer, excluding those with dementia. We found that compared to usual care, the receipt of a palliative care consultation within two days of admission was associated with 22 percent lower costs for patients with a comorbidity score of 2–3 and with 32 percent lower costs for those with a score of 4 or higher. Earlier consultation was also found to be systematically associated with a larger cost-saving effect for all subsamples defined by multimorbidity. Given ongoing workforce shortages, targeting early specialist palliative care to hospitalized patients with advanced cancer and higher numbers of serious concurrent conditions could improve care while complementing strategies to curb the growth of health spending. PMID:26733700

  16. Effects of Different Palliative Jaundice Reducing Methods on Immunologic Functions in Patients with Advanced Malignant Obstructive Jaundice.

    PubMed

    Tang, Kun; Sui, Lu-Lu; Xu, Gang; Zhang, Tong; Liu, Qiang; Liu, Xiao-Fang

    2017-08-01

    This study aimed to investigate the effects of three treatment methods on the immunological function of patients with advanced malignant obstructive jaundice (MOJ). Patients with advanced MOJ were randomly divided into three groups according to biliary drainage methods. Detection of levels of multi-indices were investigated in different time periods. After drainage, the levels of complement 3 (C3) and complement 4 (C4) were increased. Forteen days post-operation, the levels of immunoglobulin G (IgG), immunoglobulin A (IgA) and immunoglobulin M (IgM) in the group undergoing palliative surgery decreased significantly compared to those in both percutaneous transhepatic cholangio drainage (PTCD) and endoscopic retrograde biliary drainage (ERBD) groups. The level of serum endotoxin in the group undergoing palliative surgery decreased gradually. Palliative surgery for reducing jaundice is superior to PTCD and ERBD in improving immune function of patients with MOJ. Copyright© 2017, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

  17. The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients.

    PubMed

    Rosemann, Thomas; Hermann, Katja; Miksch, Antje; Engeser, Peter; Szecsenyi, Joachim

    2007-05-29

    The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS), pain (VAS), and burden for family caregivers (BSFC). The inclusion of physicians and patients in the study starts in March 2007. Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. The study was registered at 'current controlled trials (CCT)', registration number: ISRCTN78021852.

  18. Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients.

    PubMed

    Mather, Harriet; Guo, Ping; Firth, Alice; Davies, Joanna M; Sykes, Nigel; Landon, Alison; Murtagh, Fliss Em

    2017-08-01

    Phase of Illness describes stages of advanced illness according to care needs of the individual, family and suitability of care plan. There is limited evidence on its association with other measures of symptoms, and health-related needs, in palliative care. The aims of the study are as follows. (1) Describe function, pain, other physical problems, psycho-spiritual problems and family and carer support needs by Phase of Illness. (2) Consider strength of associations between these measures and Phase of Illness. Secondary analysis of patient-level data; a total of 1317 patients in three settings. Function measured using Australia-modified Karnofsky Performance Scale. Pain, other physical problems, psycho-spiritual problems and family and carer support needs measured using items on Palliative Care Problem Severity Scale. Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale items varied significantly by Phase of Illness. Mean function was highest in stable phase (65.9, 95% confidence interval = 63.4-68.3) and lowest in dying phase (16.6, 95% confidence interval = 15.3-17.8). Mean pain was highest in unstable phase (1.43, 95% confidence interval = 1.36-1.51). Multinomial regression: psycho-spiritual problems were not associated with Phase of Illness ( χ(2) = 2.940, df = 3, p = 0.401). Family and carer support needs were greater in deteriorating phase than unstable phase (odds ratio (deteriorating vs unstable) = 1.23, 95% confidence interval = 1.01-1.49). Forty-nine percent of the variance in Phase of Illness is explained by Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Phase of Illness has value as a clinical measure of overall palliative need, capturing additional information beyond Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Lack of significant association between psycho-spiritual problems and Phase of Illness

  19. [Experience of patients and their families with a palliative care interdisciplinary team].

    PubMed

    Biver, S

    2000-06-01

    This study aims at describing the experience of the patients and their family when they are faced with an interdisciplinary team in palliative care. Are the patients and their family aware of the interdisciplinarity within the team and does this organization meet their expectations? We also went deeper into some themes, i.e. pain treatment, notion of safety and the position of the patients and of his relatives as object or subject of the care. We chose the qualitative approach to answer this question. We interviewed 25 patients and 18 family referents following the method of non directive interview. The method for data processing was double: on the one hand, the constant comparative analysis of GLASER and STRAUSS enabling the emergence of significant categories from the speech of the patients and referents. on the other hand, the structural analysis method of BOURGOIS and NIZET enabling the emergence of meaning structures in the speech, their positive or negative valuation and the definition of quest plans to underline the working strategies of the actors. What could be stressed as a specific reflection subject is the perception of the team and its interdisiplinarity: the latter implies a common project around the patient and his family; it seems that if the will of the teams is indeed an interdisciplinary organization, in the praxis, it is not yet achieved. The pluridisciplinary team organization is taken for granted in most teams, but it is not perceived as such by the patients and the families. The involvement of the patients and of the families is still weak, and they are still sometimes the objects of the care. What we therefore found striking is that the patients and the relatives have a tendency to "justify" their dissatisfactions by invoking constraints to which the team members are subjected, in the hospital as well as at home. At home, the interdisciplinarity is not yet perceived by the subjects and it is striking to see the relatives who wish to "take a

  20. Understanding the purpose of treatment and expectations in patients with inoperable lung cancer treated with palliative chemotherapy

    PubMed Central

    Woźniak, Karolina; Krajnik, Małgorzata

    2015-01-01

    Aim of the study Informing cancer patients about various types of treatment and their adverse effects and communicating negative information is an important element of diagnostic and therapeutic procedures. Understanding the purpose of treatment and expectations, and socio-demographic factors in patients undergoing palliative chemotherapy because of lung cancer. Material and methods The study included 100 patients with lung cancer at the age of 40–80 years (mean 63.1) in the Oncology Center in Bydgoszcz in 2013–2014. The diagnostic survey method with the author's questionnaire was used. Results Forty-one percent of patients were convinced that the purpose of chemotherapy is to cure the disease. Both inhabitants of small towns (population below 50 thousand) and large villages (p = 0.09) were similarly convinced about the effectiveness of chemotherapy. Seventy-three percent of inhabitants of small towns and 79% of country dwellers (p = 0.005) thought that chemotherapy is aimed at improving the quality of life. Patients with very good economic conditions responded that chemotherapy is designed to improve the quality of life more often than those with good and bad economic conditions, 90%, 88% and 60%, respectively (p = 0.001). With the increase in population the number of people who claimed that palliative chemotherapy prolongs their life increased, 71%, 77% and 90%, respectively (p = 0.03). Conclusions The knowledge of patients with lung cancer about palliative chemotherapy is insufficient. Almost half of them do not understand the purpose of treatment and hope that chemotherapy will cure them of the disease. Most patients know that the aim of chemotherapy is to alleviate symptoms and improve quality of life and prolong their life. Half of the patients want to obtain information on treatment and half of them about life expectancy. Almost half of the patients feel stress and anxiety towards chemotherapy. Most patients do not use the help of a psychologist and do

  1. "There is still so much ahead of us"-family functioning in families of palliative cancer patients.

    PubMed

    Kühne, Franziska; Krattenmacher, Thomas; Bergelt, Corinna; Beierlein, Volker; Herzog, Wolfgang; v Klitzing, Kai; Weschenfelder-Stachwitz, Heike; Romer, Georg; Möller, Birgit

    2013-06-01

    Adopting a systems approach, parental cancer has its impact on patients, spouses, and dependent children. The purpose of the current study was to examine family functioning dependent on parental disease stage and on family member perspective in families of cancer patients with adolescent children. The cross-sectional study was conducted within a German multisite research project of families before their first child-centered counseling encounter. The sample comprised individuals nested within N = 169 families. Analyses performed included analysis of covariance (ANCOVA) and intraclass correlation. Open answers were analyzed following quantitative content analysis procedures. Between 15% and 36% of family members reported dysfunctional general functioning scores. Parents indicated more dysfunctional scores on the Family Assessment Device scale Roles, and adolescents more dysfunctional Communication scores. Regarding assessment of family functioning, there was higher agreement in families with parents in a palliative situation. For adolescents with parents in palliation, incidents because of the disease tend to become more dominant, and spending time with the family tends to become even more important. As our study pointed out, parental cancer, and especially parental palliative disease, is associated with both perceived critical and positive aspects in family functioning. Supporting families in these concerns as well as encouraging perceptions of positive aspects are important components of psycho-oncological interventions for families with dependent children. PsycINFO Database Record (c) 2013 APA, all rights reserved.

  2. Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care.

    PubMed

    Simon, Steffen T; Higginson, Irene J; Harding, Richard; Daveson, Barbara A; Gysels, Marjolein; Deliens, Luc; Echteld, Michael A; Radbruch, Lukas; Toscani, Franco; Krzyzanowski, Dominik M; Costantini, Massimo; Downing, Julia; Ferreira, Pedro L; Benalia, Abdelhamid; Bausewein, Claudia

    2012-07-01

    Patient-reported outcome measurement (PROM) plays an increasing role in palliative and end-of-life (EOL) care but their use in EOL care and research remains varied and inconsistent. We aimed to facilitate pan-European collaboration to improve PROMs in palliative and EOL care and research. The study includes a workshop with experts experienced in using PROMs in clinical care and research from Europe, North America, and Africa. Information from presentations, and plenary and group discussions was analysed using content analysis for extracting the main themes. Thirty-two professionals from 15 countries and eight different professional backgrounds participated in the workshop. The discussion identified: 1) the need for standardisation with improvement of existing PROMs, e.g., with a modular system and an optional item pool; 2) the aspects of further development with a multi-professional approach taking into account cultural sensitivity especially for translated versions; and 3) the need for guidance, training, and resources. An international network for sharing concepts, experiences, and solutions could enhance these steps of further development. PROMs must be based on rigorous scientific methods and respond to patient complexity. Coordinated pan-European collaboration including researchers and clinicians is required to develop and attain quality care and systematic research in outcome measurement in palliative and EOL care.

  3. Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

    PubMed

    Jarrett, N; Porter, K; Davis, C; Lathlean, J; Duke, S; Corner, J; Addington-Hall, J

    2017-06-01

    To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs. The main theme of 'patient work-their strategies and project management' is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and 'working the system'. Insights are given into the work carried out on patients' behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  4. [Standards, options and recommendations: nutritional support in palliative or terminal care of adult patients with progressive cancer].

    PubMed

    Bachmann, P; Marti-Massoud, C; Blanc-Vincent, M P; Desport, J C; Colomb, V; Dieu, L; Kere, D; Melchior, J C; Nitenberg, G; Raynard, B; Roux-Bournay, P; Schneider, S; Senesse, P

    2001-10-01

    The "Standards, Options and Recommendations" (SOR) project, started in 1993, is a collaboration between the National Federation of Comprehensive Cancer Centres (FNCLCC), the 20 French Cancer Centers and specialists from French Public Universities, General Hospitals and Private Clinics. The main objective is the development of clinical practice guidelines to improve the quality of health care and outcome for cancer patients. The methodology is based on literature review and critical appraisal by a multidisciplinary group of experts, with feedback from specialists in cancer care delivery. To develop clinical practice guidelines according to the definitions of the Standards, Options and Recommendations project for nutritional support in adult patients with advanced or terminal cancer. Data were identified by searching Medline, web sites and using the personal reference lists of members of the expert groups. Once the guidelines were defined, the document was submitted for review to 95 independent reviewers. The main recommendations for nutritional support in adult patients with advanced or terminal cancer are: 1) Palliative care has been defined in a consensual way and is governed by the law (standard). Nutritional support is a palliative care which aim is to maintain and restore the "well-being" of the patient (standard). 2) Digestive symptoms and nutritional troubles are frequently noted in patients with advanced or terminal cancer (standard, level of evidence B2). Karnofsky index (KPS) and performance status (PS) are functional scores with a prognostic value and have to be used (standard, level of evidence B2). 3) Anorexia has a bad predictive value in patients with advanced or terminal cancer (standard, level of evidence B2). 4) In France, patients with advanced or terminal cancer are referred to medical institutions, palliative care units or remained at home (standard). Patients need a multidisciplinary follow-up (standard). An active participation of patients and

  5. Métastases gastro-intestinales du cancer du sein: à propos de 2 cas

    PubMed Central

    Loubna, Mezouar; Mohamed, El Hfid; Tijani, El Harroudi; Fouzia, Ghadouani; Hanane, Haj Kacem; Zouhour, Bourhaleb; Asmae, Ouabdelmoumen

    2013-01-01

    Le cancer du sein est le cancer le plus fréquent chez la femme, notamment au Maroc, avec un taux de mortalité élevé. Les métastases gastro-intestinales d'un carcinome canalaire du sein sont rares. Leur diagnostic est difficile du fait de la nature non spécifique des symptômes. Nous rapportons deux observations originales de métastases gastroduodénales d'un cancer canalaire infiltrant du sein. Les métastases gastro-intestinales du cancer du sein sont très rares; la présence de symptômes gastro-intestinaux chez une malade ayant un antécédent de cancer du sein doit faire suspecter une atteinte métastatique gastro-intestinale. PMID:24198876

  6. Innovative palliative care in Edmonton.

    PubMed Central

    Fainsinger, R. L.; Bruera, E.; MacMillan, K.

    1997-01-01

    PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients able to move easily throughout the components of the program; to lower costs by having fewer palliative care patients die in acute care facilities; and to ensure that family physicians receive support to care for most patients at home or in palliative care units. MAIN COMPONENTS OF PROGRAM: The program includes a regional office, home care, and consultant teams. A specialized 14-bed palliative care unit provides acute care. Family physicians are the primary caregivers in the 56 palliative continuing care unit beds. CONCLUSIONS: This program appears to meet most of the need for palliative care in Edmonton. Family physicians, with support from consulting teams, have a central role. Evaluation is ongoing; an important issue is how best to support patients dying at home. Images p1984-a p1986-a PMID:9386885

  7. Delivery of safe and effective care out of hours: the impact of the shared clinical record on a patient's out-of-hours contact with specialist palliative care.

    PubMed

    Harris, D G; Owen, R E; Finlay, I G

    2011-02-01

    Access to adequate clinical information is essential for out-of-hours palliative care teams and general practitioners, specific examples to illustrate and justify this need are surprisingly rare in the medical literature. Without access to the full clinical background the patient in this lesson may have been inappropriately admitted to a palliative care unit and delayed investigations would have misguided the admitting doctor's assessment, planned investigations and management.

  8. Raising the Bar for the Care of Seriously Ill Patients: Results of a National Survey to Define Essential Palliative Care Competencies for Medical Students and Residents

    PubMed Central

    Schaefer, Kristen G.; Chittenden, Eva H.; Sullivan, Amy M.; Periyakoil, Vyjeyanth S.; Morrison, Laura J.; Carey, Elise C.; Sanchez-Reilly, Sandra; Block, Susan D.

    2014-01-01

    Purpose Given the shortage of palliative care specialists in the U.S., to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts. Method Proposed competencies were derived from existing Hospice and Palliative Medicine fellowship competencies, and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains. Results The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate=72%, 71/98). Using predefined cut-off criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains. Conclusions This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community. PMID:24979171

  9. Desire for death and requests to hasten death of Japanese terminally ill cancer patients receiving specialized inpatient palliative care.

    PubMed

    Morita, Tatsuya; Sakaguchi, Yukihiro; Hirai, Kei; Tsuneto, Satoru; Shima, Yasuo

    2004-01-01

    A desire for death and requests to hasten death are major topics in recent medical literature. The aim of this study was to clarify the bereaved family-reported incidence and reasons for desiring death and requests to hasten death during the whole course of terminally ill cancer patients receiving specialized palliative care in Japan. A nationwide questionnaire survey of 500 primary caregivers yielded a total of 290 responses (effective response rate, 62%). Sixty-two (21%) families reported that the patients had expressed a desire to die, and 29 (10%) families reported that the patients had requested that death be hastened. The major reasons for desiring death and requests to hasten death were: burden on others, dependency, meaninglessness, unable to pursue pleasurable activities, general malaise, pain, dyspnea, concerns about future distress, and wish to control the time of death. No intolerable physical symptoms were reported in 32% and 28% of the patients who desired death and those who requested to hasten death, respectively. Concerns about future distress and wishes to control the time of death were significantly more likely to be listed as major reasons for desiring death in patients who requested that death be hastened than those who did not. A desire for death and requests to hasten death are not uncommon in terminally ill cancer patients receiving specialized inpatient palliative care in Japan. More intensive strategies for general malaise, pain, and dyspnea near the end of life, and for feelings of being a burden, meaninglessness, and concerns about future distress would alleviate the serious suffering of patients with a desire for death. However, some patients with a strong wish to control the time of death might not receive benefit from conventional palliative care.

  10. Potential Influence of Advance Care Planning and Palliative Care Consultation on ICU Costs for Patients With Chronic and Serious Illness.

    PubMed

    Khandelwal, Nita; Benkeser, David C; Coe, Norma B; Curtis, J Randall

    2016-08-01

    To estimate the potential ICU-related cost savings if in-hospital advance care planning and ICU-based palliative care consultation became standard of care for patients with chronic and serious illness. Decision analysis using literature estimates and inpatient administrative data from Premier. Patients with chronic, life-limiting illness admitted to a hospital within the Premier network. None. Using Premier data (2008-2012), ICU resource utilization and costs were tracked over a 1-year time horizon for 2,097,563 patients with chronic life-limiting illness. Using a Markov microsimulation model, we explored the potential cost savings from the hospital system perspective under a variety of scenarios by varying the interventions' efficacies and availabilities. Of 2,097,563 patients, 657,825 (31%) used the ICU during the 1-year time horizon; mean ICU spending per patient was 11.3k (SD, 17.6k). In the base-case analysis, if in-hospital advance care planning and ICU-based palliative care consultation were systematically provided, we estimated a mean reduction in ICU costs of 2.8k (SD, 14.5k) per patient and an ICU cost saving of 25%. Among the simulated patients who used the ICU, the receipt of both interventions could have resulted in ICU cost savings of 1.9 billion, representing a 6% reduction in total hospital costs for these patients. In-hospital advance care planning and palliative care consultation have the potential to result in significant cost savings. Studies are needed to confirm these findings, but our results provide guidance for hospitals and policymakers.

  11. Prevalence of delirium in advanced cancer patients in home care and hospice and outcomes after 1 week of palliative care.

    PubMed

    Mercadante, Sebastiano; Masedu, Francesco; Balzani, Isabella; De Giovanni, Daniela; Montanari, Luigi; Pittureri, Cristina; Bertè, Raffaella; Russo, Domenico; Ursini, Laura; Marinangeli, Franco; Aielli, Federica

    2017-10-05

    The aim of this study was to assess the prevalence of delirium in advanced cancer patients admitted to different palliative care services in Italy and possible related factors. The secondary outcome was to assess the changes of delirium after 1 week of palliative care. A consecutive sample of patients was screened for delirium in period of 1 year in seven palliative care services. General data, including primary tumor, age, gender, concomitant disease, palliative prognostic score (PaP), and Karnofsky status, were collected. Possible causes or factors associated with delirium were looked for. The Edmonton Symptom Assessment Scale was used to assess physical and psychological symptoms and the Memorial Delirium Assessment Scale (MDAS) to assess the cognitive status of patients, at admission (T0) and 1 week after palliative care (T7). Of 848 patients screened, 263 patients were evaluated. Sixty-six patients had only the initial evaluation. The mean Karnofsky status was 34.1 (SD = 6.69); the mean PaP score at admission was 6.9 (SD = 3.97). The mean duration of palliative care assistance, equivalent to survival, was 38.4 days (SD = 48, range 2-220). The mean MDAS values at admission and after 1 week of palliative care were 6.9 (SD = 6.71) and 8.8 (SD = 8.26), respectively. One hundred ten patients (41.8%) and 167 patients (67.3%) had MDAS values ≥ 7 at admission and after 1 week of palliative care, respectively. Age, dehydration, cachexia, chemotherapy in the last three months, and intensity of drowsiness and dyspnea were independently associated with a MDAS > 7. A worsening of drowsiness, the use of opioids, and the use of corticosteroids were independently associated with changes of MDAS from T0 to T7. Although the prevalence of delirium seems to be similar to that reported in other acute settings, delirium tended to worsen or poorly responded to a palliative care treatment. Some clinical factors were independently associated with delirium. This

  12. Impact of a home-based social welfare program on care for palliative patients in the Basque Country (SAIATU Program)

    PubMed Central

    2013-01-01

    Background SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service), in Guipúzcoa (Autonomous Community of the Basque Country). In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients. The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals. The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU) results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. Method/design Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care. For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index), and of the outcomes of palliative care received (Palliative Outcome Scale). Ethical

  13. Palliative stenting for relief of dysphagia in patients with inoperable esophageal cancer: impact on quality of life.

    PubMed

    Madhusudhan, Chinthakandhi; Saluja, Sundeep S; Pal, Sujoy; Ahuja, Vineet; Saran, Pratap; Dash, Nihar R; Sahni, Peush; Chattopadhyay, Tushar K

    2009-01-01

    The aim of palliation in patients with inoperable esophageal cancer is to relieve dysphagia with minimal morbidity and mortality, and thus improve quality of life (QOL). The use of a self-expanding metal stent (SEMS) is a well-established modality for palliation of dysphagia in such patients. We assessed the QOL after palliative stenting in patients with inoperable esophageal cancer. Thirty-three patients with dysphagia due to inoperable esophageal cancer underwent SEMS insertion between October 2004 and December 2006. All patients had grade III/IV dysphagia and locally advanced unresectable cancer (n = 13), distant metastasis (n = 14), or comorbid conditions/poor general health status precluding a major surgical procedure (n = 6). Patients with grade I/II dysphagia and those with carcinoma of the cervical esophagus were excluded. The QOL was assessed using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 (version 3) and EORTC QLQ-Esophagus (OES) 18 questionnaire (a QOL scale specifically designed for esophageal diseases) before and at 1, 4, and 8 weeks after placement of the stent. The mean age of the patients was 56 (range 34-78) years, and 22 were men. A covered SEMS was used in all patients. The most common site of malignancy was the lower third of the esophagus (n = 18, 55%). In 23 (77%) patients, the stent crossed the gastroesophageal junction. Seven patients required a reintervention for stent block (n = 5) and stent migration (n = 2). Dysphagia improved significantly immediately after stenting, and this improvement persisted until 8 weeks (16.5 vs. 90.6; P < 0.01). The global health status (5.8 vs. 71.7; P < 0.01) and all functional scores improved significantly after stenting from baseline until 8 weeks. Except pain (14.1 vs. 17.7; P = 0.67), there was significant improvement in deglutition (22.7 vs. 2.0; P < 0.01), eating (48 vs. 12.6; P < 0.01), and other symptom scales (19.7 vs. 12.1; P = 0.04) following stenting. The

  14. Associations between palliative chemotherapy and adult cancer patients' end of life care and place of death: prospective cohort study.

    PubMed

    Wright, Alexi A; Zhang, Baohui; Keating, Nancy L; Weeks, Jane C; Prigerson, Holly G

    2014-03-04

    To determine whether the receipt of chemotherapy among terminally ill cancer patients months before death was associated with patients' subsequent intensive medical care and place of death. Secondary analysis of a prospective, multi-institution, longitudinal study of patients with advanced cancer. Eight outpatient oncology clinics in the United States. 386 adult patients with metastatic cancers refractory to at least one chemotherapy regimen, whom physicians identified as terminally ill at study enrollment and who subsequently died. intensive medical care (cardiopulmonary resuscitation, mechanical ventilation, or both) in the last week of life and patients' place of death (for example, intensive care unit). survival, late hospice referrals (≤ 1 week before death), and dying in preferred place of death. 216 (56%) of 386 terminally ill cancer patients were receiving palliative chemotherapy at study enrollment, a median of 4.0 months before death. After propensity score weighted adjustment, use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life (14% v 2%; adjusted risk difference 10.5%, 95% confidence interval 5.0% to 15.5%) and late hospice referrals (54% v 37%; 13.6%, 3.6% to 23.6%) but no difference in survival (hazard ratio 1.11, 95% confidence interval 0.90 to 1.38). Patients receiving palliative chemotherapy were more likely to die in an intensive care unit (11% v 2%; adjusted risk difference 6.1%, 1.1% to 11.1%) and less likely to die at home (47% v 66%; -10.8%, -1.0% to -20.6%), compared with those who were not. Patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not (65% v 80%; adjusted risk difference -9.4%, -0.8% to -18.1%). The use of chemotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary

  15. Using observation as a data collection method to help understand patient and professional roles and actions in palliative care settings.

    PubMed

    Walshe, Catherine; Ewing, Gail; Griffiths, Jane

    2012-12-01

    Observational research methods are important for understanding people's actions, roles and behaviour. However, these techniques are underused generally in healthcare research, including research in the palliative care field. The aim in this paper is to place qualitative observational data collection methods in their methodological context and provide an overview of issues to consider when using observation as a method of data collection. This paper discusses practical considerations when conducting palliative care research using observation. Observational data collection methods span research paradigms, and qualitative approaches contribute by their focus on 'natural' settings which allow the explanation of social processes and phenomena. In particular, they can facilitate understanding of what people do and how these can alter in response to situations and over time, especially where people find their own practice difficult to articulate. Observational studies can be challenging to carry out: we focus on the potentially problematic areas of sampling, consent and ethics, data collection and recording, data management and analysis. Qualitative observational data collection methods can contribute to theoretical and conceptual development and the explanation of social processes in palliative care. In particular this contribution to understanding care structures and processes should improve understanding of patients' experiences of their care journey and thus impact on care outcomes.

  16. Palliative Care

    MedlinePlus

    ... Looking for Health Lessons? Visit KidsHealth in the Classroom What Other Parents Are Reading Is Your Child ... a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care ...

  17. Palliative Care

    MedlinePlus

    Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...

  18. Palliative Reconstructive Surgery: Contextualizing Palliation in Resource-Poor Settings

    PubMed Central

    Nthumba, Peter M.

    2014-01-01

    Introduction. Palliative care in Kenya and the larger Sub-Saharan Africa is considered a preserve of hospices, where these exist. Surgical training does not arm the surgeon with the skills needed to deal with the care of palliative patients. Resource constraints demand that the surgeon be multidiscipline trained so as to be able to adequately address the needs of a growing population of patients that could benefit from surgical palliation. Patients and Methods. The author describes his experience in the management of a series of 31 palliative care patients, aged 8 to 82 years. There were a total of nine known or presumed mortalities in the first year following surgery; 17 patients experienced an improved quality of life for at least 6 months after surgery. Fourteen of these were disease-free at 6 months. Conclusion. Palliative reconstructive surgery is indicated in a select number of patients. Although cure is not the primary intent of palliative surgery, the potential benefits of an improved quality of life and the possibility of cure should encourage a more proactive role for the surgeon. The need for palliative care can be expected to increase significantly in Africa, with the estimated fourfold increase of cancer patients over the next 50 years. PMID:25530878

  19. A short radiotherapy course for locally advanced non-small cell lung cancer (NSCLC): effective palliation and patients' convenience.

    PubMed

    Plataniotis, G A; Kouvaris, J R; Dardoufas, C; Kouloulias, V; Theofanopoulou, M A; Vlahos, L

    2002-02-01

    In order to facilitate patients with symptomatic locally advanced NSCLC, especially those coming from remote areas we have employed two palliative RT schedules. The first (S1) is the well known from Medical Research Council (MRC) randomized studies 2 x 8.5 Gy one week apart and the second (S2) is a two-day RT schedule: three fractions of 4.25 Gy are given on the first day and two fractions of 4.25 Gy on the second day. The records of 92 patients were reviewed (48 for S1 and 44 for S2). Patients, disease characteristics and results were similar for both groups; rates of symptom disappearance were for S1 and S2, respectively: cough 24 and 20%, hemoptysis 60 and 67%, chest pain 57 and 64% and dyspnoea 55 and 45% The overall condition improved in 39 and 36%, respectively. The median palliation time in days was in S1 and S2, respectively: cough 70 and 66, haemoptysis 133 and 139, chest pain 68 and 62 and dyspnoea 74 and 69 days. The median survival was 25 weeks in both S1 and S2 groups (P=0.89 log-rank test). At 52 weeks (one year), ten (21%) and seven (16%) of the patients were alive in S1 and S2 groups, respectively. At 104 weeks, the corresponding figures were two (4%) and two (4.7%) for S1 and S2. Our results are in accordance to those reported in literature regarding the safety and efficacy of palliative hypofractionated radiotherapy schemes. Their use in selected patients could be cost-effective and convenient for patients especially those coming from remote areas.

  20. Barriers in Referring Neonatal Patients to Perinatal Palliative Care: A French Multicenter Survey

    PubMed Central

    Tosello, Barthélémy; Dany, Lionel; Bétrémieux, Pierre; Le Coz, Pierre; Auquier, Pascal; Gire, Catherine; Einaudi, Marie-Ange

    2015-01-01

    Background When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropiate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality. Methods We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD). Results Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally. Conclusions Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field. PMID:25978417

  1. Palliative care for Sikhs.

    PubMed

    Gatrad, Rashid; Panesar, Sukhmeet Singh; Brown, Erica; Notta, Hardev; Sheikh, Aziz

    2003-11-01

    This article provides an overview of the palliative care needs of Sikh patients. It describes the basis of Sikh beliefs and practices and discusses practical aspects of caring for terminally ill Sikh patients and their families. Issues before and after death are considered and the importance of an individual approach is highlighted.

  2. Connecting with patients and instilling realism in an era of emerging communication possibilities: a review on palliative care communication heading to telecare practice.

    PubMed

    van Gurp, Jelle; Hasselaar, Jeroen; van Leeuwen, Evert; Hoek, Patrick; Vissers, Kris; van Selm, Martine

    2013-12-01

    Appropriate palliative care communication is pivotal to optimizing the quality of life in dying patients and their families. This review aims at describing communication patterns in palliative care and discussing potential relations between communication patterns and upcoming telecare in the practice of palliative care. This review builds on a systematic five-step qualitative analysis of the selected articles: 1. Development of a 'descriptive table of studies reviewed' based on the concept of genre, 2. Open coding of table content and first broad clustering of codes, 3. Intracluster categorization of inductive codes into substantive categories, 4. Constant inter- and intracluster comparison results in identification of genres, and 5. Labeling of genres. This review includes 71 articles. In the analysis, two communication genres in palliative care proved to be dominant: the conversation to connect, about creating and maintaining a professional-patient/family relationship, and the conversation to instill realism, about telling a clinical truth without diminishing hope. The abovementioned two genres clarify a logical intertwinement between communicative purposes, the socio-ethical background underlying palliative care practice and elements of form. Our study supports understanding of current communication in palliative care and anticipates future communicative actions in an era of new communication technologies. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  3. Palliative peritoneal dialysis: Implementation of a home care programme for terminal patients treated with peritoneal dialysis (PD).

    PubMed

    Gorrin, Maite Rivera; Teruel-Briones, José Luis; Vion, Victor Burguera; Rexach, Lourdes; Quereda, Carlos

    2015-01-01

    Terminal-stage patients on peritoneal dialysis (PD) are often transferred to haemodialysis as they are unable to perform the dialysis technique themselves since their functional capacities are reduced. We present our experience with five patients on PD with a shortterm life-threatening condition, whose treatment was shared by primary care units and who were treated with a PD modality adapted to their circumstances, which we call Palliative Peritoneal Dialysis. Copyright © 2015. Published by Elsevier España, S.L.U.

  4. Danish Palliative Care Database

    PubMed Central

    Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

    2016-01-01

    Aims The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness. PMID:27822111

  5. Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

    PubMed

    Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

    2017-01-01

    The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ(2) = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ(2) = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

  6. Effects of a ninety-minute teaching module for fourth-year medical students on a palliative care ward with student-patient encounter.

    PubMed

    Weber, Martin; Braun, Julia; Schildmann, Jan

    2011-08-01

    The encounter of students and patients with a terminal illness plays an important role in this teaching. However, for ethical as well as practical reasons, there are limitations regarding the involvement of patients in palliative care teaching. In this study we investigate the effects of an obligatory 90-minute teaching intervention on a palliative care ward by means of quantitative and qualitative methods. Self-perceived knowledge, confidence and attitudes were elicited by means of a questionnaire which has been developed by the authors. The instrument includes statements which could be answered by means of numerical rating scales - NRS (1 = very low, 10 = very high). In addition, open-ended questions regarding students' self-perceptions and evaluation of the teaching were analyzed according to the principles of content analysis. All 163 participants completed the questionnaire. Participants rated their knowledge in palliative care as poor prior to the course (median, 3). Medical students indicated significantly improved confidence regarding the encounter with patients in palliative care (p < 0.001; median, 3 before versus 5.5 after), and higher interest for the subject of palliative care (median 7 before vs. 8 after). The student-patient encounter could be identified as a relevant factor contributing to the positive evaluation as part of the analysis of qualitative data. This evaluation study of an obligatory course in palliative care indicates that even a short teaching module that includes a student-patient encounter has significant effects on the medical students' self-perceived knowledge, confidence and attitudes, and their interest in palliative care.

  7. Early identification of palliative care needs by family physicians: A qualitative study of barriers and facilitators from the perspective of family physicians, community nurses, and patients.

    PubMed

    Beernaert, Kim; Deliens, Luc; De Vleminck, Aline; Devroey, Dirk; Pardon, Koen; Van den Block, Lieve; Cohen, Joachim

    2014-06-01

    There is a growing recognition that a palliative care approach should be initiated early and not just in the terminal phase for patients with life-limiting diseases. Family physicians then play a central role in identifying and managing palliative care needs, but appear to not identify them accurately or in a timely manner. To explore the barriers to and facilitators of the early identification by family physicians of the palliative care needs. Six focus groups (four with family physicians, n = 20, and two with community nurses, n = 12) and 18 interviews with patients with cancer, chronic obstructive pulmonary disease, heart failure, and dementia were held. Thematic analysis was used to derive themes that covered barriers and facilitators. Key barriers and facilitators found relate to communication styles, the perceived role of a family physician, and continuity of care. Family physicians do not systematically assess non-acute care needs, and patients do not mention them or try to mask them from the family physician. This is embedded within a predominant perception among patients, nurses, and family physicians of the family physician as the person to appeal to in acute and standard follow-up situations rather than for palliative care needs. Family physicians also seemed to pay more often attention to palliative care needs of patients in a terminal phase. The current practice of palliative care in Belgium is far from the presently considered ideal palliative care approaches. Facilitators such as proactive communication and communication tools could contribute to the development of guidelines for family physicians and policymakers in primary care.

  8. Prevalence of methicillin-resistant Staphylococcus aureus colonization and infection in hospitalized palliative care patients with cancer.

    PubMed

    Ghanem, Hafez M; Abou-Alia, Ahmad M; Alsirafy, Samy A

    2013-06-01

    Little is known about the pattern of methicillin-resistant Staphylococcus aureus (MRSA) colonization and infection in hospitalized palliative care (PC) patients. We reviewed 854 admissions for 289 patients with advanced cancer managed by a PC service in a tertiary care hospital. The MRSA screening was performed at least once in 228 (79%) patients, and 21 (9%) of them were MRSA positive. Other cultures were done in 251 (86.8%) patients, and 8 (3%) patients were MRSA positive. The total number of MRSA-positive admissions was 28 (3%), with a median admission duration of 8 days. A substantial proportion of hospitalized PC patients with cancer are MRSA positive. Research is required to study the impact of infection control measures on the quality of PC delivered to MRSA-positive terminally ill patients in hospitals.

  9. Quality of life and religious-spiritual coping in palliative cancer care patients.

    PubMed

    Matos, Ticiane Dionizio de Sousa; Meneguin, Silmara; Ferreira, Maria de Lourdes da Silva; Miot, Helio Amante

    2017-07-10

    to compare the quality of life and religious-spiritual coping of palliative cancer care patients with a group of healthy participants; assess whether the perceived quality of life is associated with the religious-spiritual coping strategies; identify the clinical and sociodemographic variables related to quality of life and religious-spiritual coping. cross-sectional study involving 96 palliative outpatient care patient at a public hospital in the interior of the state of São Paulo and 96 healthy volunteers, using a sociodemographic questionnaire, the McGill Quality of Life Questionnaire and the Brief Religious-Spiritual Coping scale. 192 participants were interviewed who presented good quality of life and high use of Religious-Spiritual Coping. Greater use of negative Religious-Spiritual Coping was found in Group A, as well as lesser physical and psychological wellbeing and quality of life. An association was observed between quality of life scores and Religious-Spiritual Coping (p<0.01) in both groups. Male sex, Catholic religion and the Brief Religious-Spiritual Coping score independently influenced the quality of life scores (p<0.01). both groups presented high quality of life and Religious-Spiritual Coping scores. Male participants who were active Catholics with higher Religious-Spiritual Coping scores presented a better perceived quality of life, suggesting that this coping strategy can be stimulated in palliative care patients. comparar a qualidade de vida e o coping religioso-espiritual de pacientes em cuidados paliativos oncológicos com um grupo de participantes sadios; avaliar se a percepção de qualidade de vida está associada às estratégias de coping religioso-espiritual; identificar as variáveis clínicas e sociodemográficas relacionadas à qualidade de vida e ao coping religioso-espiritual. estudo transversal, realizado com 96 pacientes de ambulatório de cuidados paliativos, em um hospital público no interior do Estado de São Paulo, e 96

  10. [Antidepressants for treatment of depression in palliative patients : a systematic literature review].

    PubMed

    Ujeyl, M; Müller-Oerlinghausen, B

    2012-09-01

    Treatment of depression in palliative care must take into account expected benefits and risks of antidepressants in patients with potentially limited life expectancy, poor medical condition, advanced age and higher risk to suffer from side effects and drug interactions. This systematic review assesses evidence of the efficacy and safety of different classes of antidepressants depending on the type and severity of the physical illness. A systematic database search (Medline, EMBASE) for clinical studies was carried out and references of identified literature were checked. To be included in the review studies had to be performed in illnesses that were part of in the search strategy, such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, HIV/AIDS, cancer, COPD and heart failure. Considered were controlled studies comparing the efficacy of antidepressants to placebo, other classes of antidepressants, benzodiazepines, psychostimulants or psychotherapy. In a first step only studies with patients meeting established diagnostic criteria of depression and where depression was a primary endpoint were included. In a second step, additional studies were included that did not meet both of the latter criteria but were performed in patients at the end of life. A total of 40 trials (mostly using SSRI or NSMRI) were included, 16 studies were performed in neurological, 24 in general medical conditions and 9 studies were performed in patients at the end of life or in advanced disease stages. Due to heterogeneous study designs no conclusions can be drawn if efficacy or tolerability is dependent on disease severity. In most cases, studies might have been too small to detect limited treatment effects. As a lack of efficacy was predominantly shown in larger trials, publication bias might have been present. In most of the reviewed general medical conditions study results were heterogeneous. In contrast to the popularity of the treatment approach, results suggest that SSRIs

  11. Dejection and self-assessment of quality of life in patients with lung cancer subjected to palliative care.

    PubMed

    Nowicki, Andrzej; Farbicka, Paulina; Krajnik, Małgorzata

    2015-01-01

    To evaluate the intensity of dejection and self-assessment of quality of life in patients with lung cancer from the start of palliative care until death. The study included 63 patients with lung cancer from the start of care until death in palliative medicine centers in Bydgoszcz in 2012-2013. The visual-analogue scale constituting part of the ESAS scale was used to assess dejection, while question number 30 of the EORTC QLQ-C30 was used for self-assessment of quality of life. "Moderate" and "very" intense dejection initially occurred in 19 (30%) and 24 (38%), and in the 2(nd) assessment in as many as 23 (36%) and 30 (48%) patients. Average quality of life deteriorated in this respect by 0.09 in the two-step scale (p = 0.005). Increase in the intensity of "moderate" dejection occurred between the 1(st) and 3(rd) assessment. Initially it occurred in 2 (9%) patients and in 14 (66%) during the 3(rd) assessment. In contrast, the levels of "very" severe dejection did not change significantly between the 1(st) and the 3(rd) assessment. The average quality of life deteriorated by 0.23 points (p = 0.004). A significant relationship was found only between analgesic treatment and quality of life (p < 0.0005). Other factors such as age, time from diagnosis to start of treatment, place of residence, sex, or financial condition did not affect the quality of life. Self-assessment of the quality of life worsens with time. The intensity of dejection does not change in the last 3 weeks of life. In multivariate analysis, among the selected variables such as age, sex, place of residence, time from diagnosis to start of palliative care, financial condition, and type of painkillers used, only the latter has an impact on self-assessed quality of life.

  12. Sleep-wake difficulties in community-dwelling cancer patients receiving palliative care: subjective and objective assessment.

    PubMed

    Bernatchez, Marie Solange; Savard, Josée; Savard, Marie-Hélène; Aubin, Michèle; Ivers, Hans

    2017-09-21

    Prevalence rates of sleep difficulties in advanced cancer patients have varied widely across studies (12 to 96%), and none of these employed a diagnostic interview to distinguish different types of sleep-wake disorders. Moreover, very limited information is available on subjective and objective sleep parameters in this population. Our study was conducted in palliative cancer patients and aimed to assess rates of sleep-wake disorders and subsyndromal symptoms and to document subjective and objective sleep-wake parameters across various types of sleep-wake difficulties. The sample was composed of 51 community-dwelling cancer patients receiving palliative care and having an Eastern Cooperative Oncology Group score of 2 or 3. Relevant sections of the Duke Interview for Sleep Disorders were administered over the phone. An actigraphic recording and a daily sleep diary were completed for 7 consecutive days. Overall, 68.6% of the sample had at least one type of sleep-wake difficulty (disorder or symptoms): 31.4% had insomnia and 29.4% had hypersomnolence as their main sleep-wake problem. Participants with insomnia as their main sleep difficulty had greater disruptions of subjective sleep parameters, while objectively-assessed sleep was more disrupted in patients with hypersomnolence comorbid with another sleep-wake difficulty. Significance of the Results: The high rates of sleep-wake difficulties found in this study indicate a need to screen more systematically for sleep-wake disorders, including insomnia and hypersomnolence, in both palliative care research and clinical practice, and to develop effective nonpharmacological interventions specifically adapted to this population.

  13. Strategies to Support Recruitment of Patients with Life-limiting illness for Research: The Palliative Care Research Cooperative Group

    PubMed Central

    Hanson, Laura C.; Bull, Janet; Wessell, Kathryn; Massie, Lisa; Bennett, Rachael E.; Kutner, Jean S.; Aziz, Noreen M.; Abernethy, Amy

    2014-01-01

    Context The Palliative Care Research Cooperative group (PCRC) is the first clinical trials cooperative for palliative care in the United States. Objectives To describe barriers and strategies for recruitment during the inaugural PCRC clinical trial. Methods The parent study was a multi-site randomized controlled trial enrolling adults with life expectancy anticipated to be 1–6 months, randomized to discontinue statins (intervention) vs. to continue on statins (control). To study recruitment best practices, we conducted semi-structured interviews with 18 site Principal Investigators (PI) and Clinical Research Coordinators (CRC), and reviewed recruitment rates. Interviews covered 3 topics – 1) successful strategies for recruitment, 2) barriers to recruitment, and 3) optimal roles of the PI and CRC. Results All eligible site PIs and CRCs completed interviews and provided data on statin protocol recruitment. The parent study completed recruitment of n=381 patients. Site enrollment ranged from 1–109 participants, with an average of 25 enrolled per site. Five major barriers included difficulty locating eligible patients, severity of illness, family and provider protectiveness, seeking patients in multiple settings, and lack of resources for recruitment activities. Five effective recruitment strategies included systematic screening of patient lists, thoughtful messaging to make research relevant, flexible protocols to accommodate patients’ needs, support from clinical champions, and the additional resources of a trials cooperative group. Conclusion The recruitment experience from the multi-site PCRC yields new insights into methods for effective recruitment to palliative care clinical trials. These results will inform training materials for the PCRC and may assist other investigators in the field. PMID:24863152

  14. Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.

    PubMed

    Bergdahl, Elisabeth; Benzein, Eva; Ternestedt, Britt-Marie; Elmberger, Eva; Andershed, Birgitta

    2013-12-01

    The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.

  15. Validation of a Predictive Model for Survival in Metastatic Cancer Patients Attending an Outpatient Palliative Radiotherapy Clinic

    SciTech Connect

    Chow, Edward Abdolell, Mohamed; Panzarella, Tony; Harris, Kristin; Bezjak, Andrea; Warde, Padraig; Tannock, Ian

    2009-01-01

    Purpose: To validate a predictive model for survival of patients attending a palliative radiotherapy clinic. Methods and Materials: We described previously a model that had good predictive value for survival of patients referred during 1999 (1). The six prognostic factors (primary cancer site, site of metastases, Karnofsky performance score, and the fatigue, appetite and shortness-of-breath items from the Edmonton Symptom Assessment Scale) identified in this training set were extracted from the prospective database for the year 2000. We generated a partial score whereby each prognostic factor was assigned a value proportional to its prognostic weight. The sum of the partial scores for each patient was used to construct a survival prediction score (SPS). Patients were also grouped according to the number of these risk factors (NRF) that they possessed. The probability of survival at 3, 6, and 12 months was generated. The models were evaluated for their ability to predict survival in this validation set with appropriate statistical tests. Results: The median survival and survival probabilities of the training and validation sets were similar when separated into three groups using both SPS and NRF methods. There was no statistical difference in the performance of the SPS and NRF methods in survival prediction. Conclusion: Both the SPS and NRF models for predicting survival in patients referred for palliative radiotherapy have been validated. The NRF model is preferred because it is simpler and avoids the need to remember the weightings among the prognostic factors.

  16. Assessment of Status of Patients Receiving Palliative Home Care and Services Provided in a Rural Area—Kerala, India

    PubMed Central

    Thayyil, Jayakrishnan; Cherumanalil, Jeeja Mathummal

    2012-01-01

    Context: For the first time in India, a Pain and Palliative Care policy to guide the community-based home care initiatives was declared by the Government of Kerala state. In Kerala, majority of the panchayats (local self-governments) are now conducting home-based palliative care as part of primary health care. National focus domain areas in palliative care research are structure and process, the physical aspects, and also the social aspects of care. Aims: The study was conducted to assess the patient's status and the services provided by palliative home care. Settings and Design: The descriptive study was conducted at Mavoor panchayat—Kozhikode district of Kerala, India by collecting information from the case records, nurses diary notes of all enrolled patients. Materials and Methods: Collecting information from the case records, nurses diary notes of all enrolled patients. Statistical Analysis: The data were entered using Microsoft excel for Windows XP and analyzed using SPSS 16.0 (Statistical Package for Social Sciences; SPSS Inc., Chicago, IL, USA). Results: Totally, 104 patients were enrolled. Diagnosis wise major category was degenerative diseases. There were 27% persons suffering from cerebrovascular accidents, 15.3% with malignancies, 8.7% with coronary artery disease, 5.8% with complications of diabetes, and 8.7% were with fracture of bones. The major complaints were weakness (41.3%), tiredness (31.7%), and pain (27%). Twenty-five percent persons complained of urinary incontinence, 12.5% complained of ulcer, 10.6% of edema, and 9.6% of mental/emotional agony. The activity of daily living status was as follows. Twenty-five percent subjects were completely bed ridden. 5.8% were feeding through Ryles tube, 16.3% had urinary incontinence, 9.6% were having no bowel control. Conclusions: The service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their pain and symptoms. The interface between institutional

  17. Interventions for healthcare professionals, organizations and patients to enhance quality of life for people diagnosed with palliative esophagogastric cancer: a systematic review.

    PubMed

    Cowley, Alison; Bath-Hextall, Fiona; Cooper, Joanne

    2017-03-01

    Esophagogastric (EG) cancer is the fifth most common malignancy, and its incidence is increasing. The disease is fast paced, and five-year survival rates are poor. Treatment with palliative intent is provided for the majority of patients but there remains a lack of empirical evidence into the most effective service models to support EG cancer patients. The overall objective of this quantitative systematic review was to establish best practice in relation to interventions targeted at healthcare professionals or the structures in which healthcare professionals deliver care (i.e. models of care and practice) and patients (diagnosed with palliative EG cancer) to enhance the quality of life for people diagnosed with palliative EG cancer. The current review considered studies that included patients diagnosed with palliative EG cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The current review considered studies that evaluated any intervention or combination of intervention strategies aimed at healthcare professionals, organizations or patients to improve quality of life for people diagnosed with palliative EG cancer. The current review considered both experimental and epidemiological study designs. Studies were excluded that evaluated: screening programs, pharmacology alone, palliative oncology and palliative endoscopy. The primary outcome measure was objectively measured quality of life. A three-step search strategy was utilized. Sixteen databases were searched for papers from the year 2000 onward and followed by hand searching of reference lists. Methodological quality was not assessed as no articles were found that met the inclusion criteria. Data extraction was not possible as no articles were found that met the inclusion criteria. It was not possible to complete data synthesis as no articles were found that met the inclusion criteria. Comprehensive searching and study

  18. Dimethyl sulfoxide-sodium bicarbonate infusion for palliative care and pain relief in patients with metastatic prostate cancer.

    PubMed

    Hoang, Ba X; Le, Bao T; Tran, Hau D; Hoang, Cuong; Tran, Hung Q; Tran, Dao M; Pham, Cu Q; Pham, Tuan D; Ha, Trung V; Bui, Nga T; Shaw, D Graeme

    2011-01-01

    Prostate cancer (adenocarcinoma of the prostate) is the most widespread cancer in men. It causes significant suffering and mortality due to metastatic disease. The main therapy for metastatic prostate cancer (MPC) includes androgen manipulation, chemotherapy, and radiotherapy and/or radioisotopes. However, these therapeutic approaches are considered palliative at this stage, and their significant side effects can cause further decline in patients' quality of life and increase non-cancer-related morbidity/mortality. In this study, the authors have used the infusion of dimethyl sulfoxide-sodium bicarbonate (DMSO-SB) to treat 18 patients with MPC. The 90-day follow-up of the patients having undergone the proposed therapeutic regimen showed significant improvement in clinical symptoms, blood and biochemistry tests, and quality of life. There were no major side effects from the treatment. In searching for new and better methods for palliative treatment and pain relief, this study strongly suggested therapy with DMSO-SB infusions could provide a rational alternative to conventional treatment for patients with MPC.

  19. Communicating with Patients and their Families about Palliative and End of Life: Comfort and Educational Needs of Staff RNs

    PubMed Central

    Moir, Cheryl; Roberts, Renee; Martz, Kim; Perry, Judith; Tivis, Laura J.

    2016-01-01

    Introduction Effectively discussing palliative care with patients and families requires knowledge and skill. The purpose of this study was to determine perceived needs of inpatient nurses for communicating with patients and families about palliative and end of life care. Method A non-experimental design was utilized. Sixty inpatient nurses completed the End of Life Professional Caregiver survey. Results Effects for years of experience and unit were found [F(9,131.57)=2.22, p=0.0246; Wilk's Λ=0.709 and F(6,110)=2.49, p=0.0269]. For all three domains (Patient and Family-Centered Communication, Cultural and Ethical Values, and Effective Care Delivery) years of nursing experience was positively associated with comfort in communicating about end of life care. Oncology nurses reported were most comfortable with regard to patient and family-centered communication. Discussion The success and sustainability of this service is dependent on education for healthcare providers. Studies are needed to determine best ways to meet this educational challenge. PMID:25815758

  20. Cancer-related pain in older adults receiving palliative care: Patient and family caregiver perspectives on the experience of pain

    PubMed Central

    McPherson, Christine J; Hadjistavropoulos, Thomas; Lobchuk, Michelle M; Kilgour, Kelly N

    2013-01-01

    BACKGROUND: Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients’ cancer-related pain, despite its significance for pain management in the home setting. OBJECTIVES: To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers. METHODS: A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (≥65 years of age) with advanced cancer receiving palliative care at home and their family caregivers. RESULTS: The main category ‘Experiencing cancer pain’ incorporated three themes. The theme ‘Feeling cancer pain’ included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, ‘Reacting to cancer pain’, included patients’ and family caregivers’ behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, ‘Living with cancer pain’ incorporated individual and social-relational changes that resulted from living with cancer pain. CONCLUSIONS: The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged. PMID:23957019

  1. Efficacy of Oral Risperidone, Haloperidol, or Placebo for Symptoms of Delirium Among Patients in Palliative Care: A Randomized Clinical Trial.

    PubMed

    Agar, Meera R; Lawlor, Peter G; Quinn, Stephen; Draper, Brian; Caplan, Gideon A; Rowett, Debra; Sanderson, Christine; Hardy, Janet; Le, Brian; Eckermann, Simon; McCaffrey, Nicola; Devilee, Linda; Fazekas, Belinda; Hill, Mark; Currow, David C

    2017-01-01

    Antipsychotics are widely used for distressing symptoms of delirium, but efficacy has not been established in placebo-controlled trials in palliative care. To determine efficacy of risperidone or haloperidol relative to placebo in relieving target symptoms of delirium associated with distress among patients receiving palliative care. A double-blind, parallel-arm, dose-titrated randomized clinical trial was conducted at 11 Australian inpatient hospice or hospital palliative care services between August 13, 2008, and April 2, 2014, among participants with life-limiting illness, delirium, and a delirium symptoms score (sum of Nursing Delirium Screening Scale behavioral, communication, and perceptual items) of 1 or more. Age-adjusted titrated doses of oral risperidone, haloperidol, or placebo solution were administered every 12 hours for 72 hours, based on symptoms of delirium. Patients also received supportive care, individualized treatment of delirium precipitants, and subcutaneous midazolam hydrochloride as required for severe distress or safety. Improvement in mean group difference of delirium symptom score (severity range, 0-6) between baseline and day 3. Five a priori secondary outcomes: delirium severity, midazolam use, extrapyramidal effects, sedation, and survival. Two hundred forty-seven participants (mean [SD] age, 74.9 [9.8] years; 85 women [34.4%]; 218 with cancer [88.3%]) were included in intention-to-treat analysis (82 receiving risperidone, 81 receiving haloperidol, and 84 receiving placebo). In the primary intention-to-treat analysis, participants in the risperidone arm had delirium symptom scores that were significantly higher than those among participants in the placebo arm (on average 0.48 Units higher; 95% CI, 0.09-0.86; P = .02) at study end. Similarly, for those in the haloperidol arm, delirium symptom scores were on average 0.24 Units higher (95% CI, 0.06-0.42; P = .009) than in the placebo arm. Compared with placebo, patients in both

  2. Patient Perspectives on Participation in the ENABLE II Randomized Controlled Trial of a Concurrent Oncology Palliative Care Intervention: Benefits and Burdens

    PubMed Central

    Maloney, Cristine; Lyons, Kathleen Doyle; Li, Zhongze; Hegel, Mark; Ahles, Tim A.; Bakitas, Marie

    2013-01-01

    Background ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known about how participants experience early palliative care and the benefits and burdens of participating in a palliative care clinical trial. Aim To gain a deeper understanding of participants’ perspectives about the intervention and palliative care trial participation. Design A qualitative descriptive study using thematic analysis to determine benefits and burdens of a new palliative care intervention and trial participation. Setting/Participants Of the 72 participants who were alive when the study commenced, 53 agreed to complete an in-depth, semi-structured interview regarding the ENABLE II intervention and clinical trial participation. Results Participants’ perceptions of intervention benefits were represented by four themes: enhanced problem-solving skills, better coping, feeling empowered, and feeling supported or reassured. Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve. Conclusions The benefits of the intervention and the positive aspects of trial participation outweighed trial “burdens”. This study raises additional important questions relevant to future trial design and intervention development: when should a palliative care intervention be initiated and what aspects of self-care and healthy living should be offered in addition to palliative content for advanced cancer patients when they are feeling well? PMID:22573470

  3. Effectiveness of the ACA (Availability, Current issues and Anticipation) training programme on GP-patient communication in palliative care; a controlled trial.

    PubMed

    Slort, Willemjan; Blankenstein, Annette H; Schweitzer, Bart P M; Knol, Dirk L; Deliens, Luc; Aaronson, Neil K; van der Horst, Henriëtte E

    2013-07-02

    Communicating effectively with palliative care patients has been acknowledged to be somewhat difficult, but little is known about the effect that training general practitioners (GPs) in specific elements of communication in palliative care might have. We hypothesized that GPs exposed to a new training programme in GP-patient communication in palliative care focusing on availability of the GP for the patient, current issues the GP should discuss with the patient and anticipation by the GP of various scenarios (ACA), would discuss more issues and become more skilled in their communication with palliative care patients. In this controlled trial among GPs who attended a two-year Palliative Care Peer Group Training Course in the Netherlands only intervention GPs received the ACA training programme. To evaluate the effect of the programme a content analysis (Roter Interaction Analysis System) was performed of one videotaped 15-minute consultation of each GP with a simulated palliative care patient conducted at baseline, and one at 12 months follow-up. Both how the GP communicated with the patient ('availability') and the number of current and anticipated issues the GP discussed with the patient were measured quantitatively. We used linear mixed models and logistic regression models to evaluate between-group differences over time. Sixty-two GPs were assigned to the intervention and 64 to the control group. We found no effect of the ACA training programme on how the GPs communicated with the patient or on the number of issues discussed by GPs with the patient. The total number of issues discussed by the GPs was eight out of 13 before and after the training in both groups. The ACA training programme did not influence how the GPs communicated with the simulated palliative care patient or the number of issues discussed by the GPs in this trial. Further research should evaluate whether this training programme is effective for GPs who do not have a special interest in

  4. Assessing ST Segment Changes and Ischemia During Exercise Stress Testing in Patients with Hypoplastic Left Heart Syndrome and Fontan Palliation.

    PubMed

    Kyle, William Buck; Denfield, Susan W; Valdes, Santiago O; Penny, Daniel J; Bolin, Elijah H; Lopez, Keila N

    2016-03-01

    While exercise stress testing (EST) is an important tool, little is known about its use for determining ischemia in patients with hypoplastic left heart syndrome (HLHS) and Fontan palliation. We sought to determine the frequency of ST segment changes during EST in HLHS patients after Fontan and examine results of further testing performed in response to ST changes. A single-center chart review of HLHS patients post-Fontan from January 1995 to December 2012 was performed. Data collected included demographics, indications for EST, resting electrocardiogram findings, EST and echocardiogram results and outcomes. ESTs were evaluated for ST segment changes concerning for ischemia. Results of additional testing performed based on concerning EST findings were collected. Twenty-seven patients underwent 64 ESTs (mean 2.4 ESTs/patient). Median age at first EST was 9.6 years (range 6.2-16.4). EST was concerning for ischemia in 13 patients (48 %) on 25 (39 %) ESTs. Based on EST results, two patients had stress sestamibi testing, two underwent coronary angiography, and one had both. No reversible perfusion defects or coronary artery obstructions were demonstrated. No patient who underwent EST has died. ST segment depression was not associated with ventricular dysfunction prior to EST or at the end of follow-up (p > 0.05). In patients with HLHS post-Fontan palliation, ST segment depression on EST is common. In patients who underwent further testing, no evidence of ischemia or coronary abnormalities was found. Additional testing may not be necessary in all patients.

  5. Palliative chemotherapy: oxymoron or misunderstanding?

    PubMed

    Roeland, E J; LeBlanc, T W

    2016-03-21

    Oncologists routinely prescribe chemotherapy for patients with advanced cancer. This practice is sometimes misunderstood by palliative care clinicians, yet data clearly show that chemotherapy can be a powerful palliative intervention when applied appropriately. Clarity regarding the term "palliative chemotherapy" is needed: it is chemotherapy given in the non-curative setting to optimize symptom control, improve quality of life, and sometimes to improve survival. Unfortunately, oncologists lack adequate tools to predict which patients will benefit. In a study recently published in BMC Palliative Care, Creutzfeldt et al. presented an innovative approach to advancing the science in this area: using patient reported outcomes to predict responses to palliative chemotherapy. With further research, investigators may be able to develop predictive models for use at the bedside to inform clinical decision-making about the risks and benefits of treatment. In the meantime, oncologists and palliative care clinicians must work together to reduce the use of "end-of-life chemotherapy"-chemotherapy given close to death, which does not improve longevity or symptom control-while optimizing the use of chemotherapy that has true palliative benefits for patients.

  6. Sequential Assessments of the Eastern Cooperative Oncology Group Performance Scale Enhance Prognostic Value in Patients With Terminally Ill Cancer Receiving Palliative Care.

    PubMed

    Peng, Meng-Ting; Liu, Chien-Ting; Hung, Yu-Shin; Kao, Chen-Yi; Chang, Pei-Hung; Yeh, Kun-Yun; Wang, Hung-Ming; Lin, Yung-Chang; Chou, Wen-Chi

    2016-06-01

    This study aimed to assess the utility of the Eastern Cooperative Oncology Group (ECOG) performance scale assessments on days 1 and 8 of palliative care, as well as scale change between these assessments, as prognostic tools for patients with terminally ill cancer. A total of 2392 patients with terminally ill cancer who received palliative care between January 2006 and December 2011 at a single medical center were analyzed. Our study showed that the ECOG scale is a useful prognostic tool to predict life expectancy in patients with terminally ill cancer. The ECOG scale assessments at different time points under palliative care were independent predictors for overall survival. The combined ECOG scale assessments on days 1 and 8 predicted survival more precisely than using day 1 ECOG scale assessment alone.

  7. When and how should physicians determine the need for palliative and hospice care for patients with end-stage liver disease?: an experience in Taiwan.

    PubMed

    Lee, Po-Chu; Lo, Chiao; Ko, Wen-Je; Huang, Sheng-Jean; Lee, Po-Huang

    2014-06-01

    We analyzed one case of end-stage liver disease and discussed whether the palliative care should be considered for this case. The medical record of a 56-year-old woman with alcoholic liver cirrhosis admitted to our hospital due to hypovolemic shock and esophageal varices (EV) was reviewed. The EV with active bleeding were arrested by panendoscopic intervention. However, repeat surgery revealed transmural laceration over the cardia, and immediate surgery and splenectomy were needed. The patient died postoperatively in the surgical intensive care unit due to bleeding tendency and hypovolemic shock. We suggest that palliative care and/or hospice care should have been considered for this patient before the crisis developed and that physicians require education about timely palliative and hospice care for patients with end-stage nonmalignant disease.

  8. Total palliative care for a patient with multiple cerebral infarctions that occurred repeatedly in association with gastric cancer (Trousseau's syndrome).

    PubMed

    Ukai, Katsuyuki; Okajima, Akiko; Yamauchi, Aya; Sasaki, Eiji; Yamaguchi, Yohsuke; Kimura, Hiroyuki; Aleksic, Branko; Ozaki, Norio

    2013-04-01

    Malignancy-related thromboembolism, also referred to as Trousseau's syndrome, can present as acute cerebral infarction, nonbacterial thrombotic endocarditis (NBTE), and migratory thrombophlebitis. Therefore, many physical, neurological, and psychological symptoms associated with Trousseau's syndrome may occur in the clinical course. To illustrate this, we report a case of a male patient in his 50s with carcinomatous peritonitis caused by gastric cancer, with multiple cerebral infractions that developed during disease progression. The patient was admitted to our hospital for the treatment of side effects of chemotherapy, although he strongly hoped to go home as soon as possible. In addition to making social supports plans, we were required to perform intensive total palliative care, because of his physical pain, general fatigue, anorexia, abdominal and neck pain, and psychological issues (insomnia, delirium, depression, suicidal thoughts, self-mutilation, panic attacks, agoraphobia, fear of death, and feelings of hopelessness). To the best of our knowledge, based on the literature search, this is the first reported case of Trousseau's syndrome described in the context of total palliative care, especially psychological care. We propose that neurological symptoms of Trousseau's syndrome cause these extensive mental disorders. Furthermore, because of the prognosis of Trousseau's syndrome, we should utilize our expertise fulfill the patient's wishes.

  9. Anti-Neoplastic Therapy Use in Advanced Cancer Patients Admitted to an Acute Palliative Care Unit at a Comprehensive Cancer Center: A Simultaneous Care Model

    PubMed Central

    Hui, David; Elsayem, Ahmed; Li, Zhijun; De La Cruz, Maxine; Palmer, J Lynn; Bruera, Eduardo

    2010-01-01

    BACKGROUND Cancer patients admitted to a palliative care unit generally have a poor prognosis. The role of antineoplastic therapy (ANT) in these patients is controversial. We examined the frequency and predictors associated with ANT use in hospitalized patients who required an acute palliative care unit (APCU) stay. METHODS We included all 2604 patients admitted over a five-year period to a 12-bed APCU located within a National Cancer Institute comprehensive cancer center, where patients can access both palliative care and ANT. We retrospectively retrieved from institutional databases patient demographics, cancer diagnosis, ANT use, length of hospital stay, and survival from time of admission. RESULTS The median hospital stay was 11 days and the median survival was 22 days. During hospitalization, 435 patients (17%) received ANT, including chemotherapy (N=297, 11%), hormonal agents (N=54, 2%) and targeted therapy (N=155, 6%). No significant change in frequency of ANT use was detected over the 5 year period. Multivariate logistic regression analysis revealed that younger age, specific cancer diagnoses and longer admissions were independently associated with ANT use. CONCLUSION The use of ANT during hospitalization that included an APCU stay was limited to a small percentage of patients, and did not increase over time. ANT use was associated with younger age, specific cancer diagnoses and longer admissions. The APCU facilitates simultaneous care where patients access palliative care while on ANT. PMID:20162701

  10. Overcoming Barriers to Palliative Care Consultation.

    PubMed

    Perrin, Kathleen Ouimet; Kazanowski, Mary

    2015-10-01

    Palliative care consultations for patients with life-threatening illnesses provide benefits for the patients and their families as well as for the health care team. Patients have better quality of life and live longer but cost the health care system less. Still, many patients are not offered the opportunity to receive a palliative care consultation. Barriers to palliative care consultation for patients in critical care units include misunderstandings about palliative care and not having agreed upon criteria for referral. Critical care nurses can assist in overcoming these barriers.

  11. Readmissions in Cancer Patients After Receiving Inpatient Palliative Care in Taiwan: A 9-Year Nationwide Population-Based Cohort Study.

    PubMed

    Chang, Hsiao-Ting; Chen, Chun-Ku; Lin, Ming-Hwai; Chou, Pesus; Chen, Tzeng-Ji; Hwang, Shinn-Jang

    2016-02-01

    Few studies have reported on readmissions among cancer patients receiving inpatient palliative care (IPC). This study investigated readmissions in cancer patients after their first discharge from IPC in Taiwan from 2002 to 2010.This study was a secondary data analysis using information from the National Health Insurance Database in Taiwan from 2002 to 2010. We included subjects ≥20 years old diagnosed with malignant neoplasms who were listed in the registry of catastrophic illness. Patients diagnosed with cancer before January 1, 2002 or who had ever been admitted to an inpatient hospice palliative care unit before the study period were excluded. Readmission was defined as hospital readmission at least once after discharge from first admission to IPC until mortality or the end of the study period.A total of 42,022 patients who met the inclusion criteria were identified. The majority of these patients were male (60.4%). The mean age of cancer diagnosis was 64.0 ± 14.4 years for men and 64.5 ± 14.7 years for women. The mean age at first hospice ward admission was 65.2 ± 14.2 years for men and 65.9 ± 14.9 years for women. During their first admission to IPC, 59.2% patients died, and the median stay of first IPC admission was 8.0 days. Among those discharged alive from their first admission to IPC, 64.9% were readmitted, and 19.4% of these patients were readmitted on the same day of discharge. From first IPC discharge until mortality, 54.8% of patients were readmitted once, 23.9% were readmitted twice, 9.9% were readmitted 3 times, and 11.5% were readmitted 4 or more times. Being male, having a higher insurance premium level, having a longer length of stay during first IPC admission, being admitted to a teaching hospital, or being admitted to a tertiary hospital increased the adjusted hazard ratio for readmission.We found that terminal cancer patients in Taiwan received relatively late referrals for first admission to IPC and experienced a high

  12. Palliative Care and Patient Autonomy: Moving Beyond Prohibitions Against Hastening Death

    PubMed Central

    LiPuma, Samuel H.; DeMarco, Joseph P.

    2016-01-01

    The National Hospice and Palliative Care Organization (NHPCO) upholds policies prohibiting practices that deliberately hasten death. We find these policies overly restrictive and unreasonable. We argue that under specified circumstances it is both reasonable and morally sound to allow for treatments that may deliberately hasten death; these treatments should be part of the NHPCO guidelines. Broadening such policies would be more consistent with the gold standard of bioethical principles, ie, respecting the autonomy of competent adults. PMID:27980420

  13. Pediatric palliative care.

    PubMed

    Klick, Jeffrey C; Hauer, Julie

    2010-07-01

    Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a