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Sample records for palliative day care

  1. [Palliative care day hospital and nursing coordination].

    PubMed

    Teillet, Fabienne

    2015-11-01

    The palliative care day hospital is still underdeveloped in France, unlike in Anglo-Saxon countries. Its main mission is to help improve the quality of life at home of the patient suffering from a serious and progressive disease. It offers an inter-disciplinary and global approach in which the nurse's role is quite specific. PMID:26567073

  2. Palliative Care

    MedlinePlus

    Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing ... care at the end of life, always includes palliative care. But you may receive palliative care at any ...

  3. Palliative Care

    MedlinePlus

    ... 5 Things to Know About Zika & Pregnancy Palliative Care KidsHealth > For Parents > Palliative Care Print A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...

  4. Palliative care - what the final days are like

    MedlinePlus

    ... D, Caraceni AT, Fainsinger R, et al., eds. Palliative Medicine . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap 177. Rakel RE, Strauch EM. Care of the dying patient. Rakel RE, Rakel DP, ...

  5. Palliative Care

    MedlinePlus

    ... you with all of these questions and discussions. Making Decisions About End-of-Life Care DNR/DNI/AND ... Experience Positive Growth? Grieving and Palliative Care Overview Making Decisions About End-of-Life Care DNR/DNI/AND ...

  6. 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 ...

  7. Palliative care - what the final days are like

    MedlinePlus

    End of life - final days; Hospice - final days ... serious illnesses or who are in the final days of life. ... do symptoms change for patients in the last days and hours of life? In: Goldstein NE, Morrison ...

  8. What is palliative care?

    MedlinePlus

    Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help patients with serious illnesses feel better. It prevents or treats symptoms and side effects of disease ...

  9. What is palliative care?

    MedlinePlus

    Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...

  10. 78 FR 15958 - Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-13

    ... HUMAN SERVICES National Institutes of Health Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey SUMMARY: Under the provisions of Section 3507(a)(1)(D) of.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey, ] 0925-New--National Institute...

  11. Palliative or Comfort Care

    MedlinePlus

    ... or efforts to cure your illness. Medicare, Medicaid, Veterans Health Administration benefits, and private health insurance cover many palliative care services. Many hospitals provide palliative care, and it ...

  12. Palliative Care in Cancer

    MedlinePlus

    ... palliative care is beneficial? Yes. Research shows that palliative care and its many components are beneficial to patient and family health and well-being. A number of studies in recent years have shown that patients who ...

  13. Palliative care - managing pain

    MedlinePlus

    Palliative care helps people with serious illnesses feel better. One of the problems a serious illness can cause ... Bookbinder M, McHugh ME. Symptom management in palliative care and ... Challenging pain problems. In: Walsh D, Caraceni AT, Fainsinger ...

  14. Does the Culture of Modern Day Palliative Care Social Work Leave Room for Leadership?

    PubMed Central

    Davidson, Jason

    2016-01-01

    This paper describes research undertaken as part of an MA study in leadership. It draws on interviews with six high profile leaders at the fore front of end of life care sector in the UK. Its findings and emerging themes offer insights about the opportunities for social work leaders in palliative care in the future and how the profession and palliative care sector address current barriers to taking advantage of such opportunity. The main focus of this paper is leadership related to palliative care social work. However, it relates to much broader themes including the history, politics and culture of this profession and the requirements for leadership on the part of social work in the broader contexts of health and social care. PMID:27570357

  15. 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

  16. Pediatric palliative care.

    PubMed

    Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie

    2011-06-01

    Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included. PMID:21628042

  17. Education in palliative care.

    PubMed

    Weissman, David E; Blust, Linda

    2005-02-01

    Palliative care education includes the domains of pain and nonpain symptom management, communications skills, ethics and law, psychosocial care, and health systems. Defining key attitudes, knowledge, and skill objectives, and matching these to appropriate learning formats, is essential in educational planning. Abundant educational resource material is available to support classroom and experiential palliative care training. PMID:15639043

  18. The development of a 7-day community specialist palliative care service.

    PubMed

    Gallagher, Jennifer

    2013-12-01

    The author worked as a clinical nurse specialist (CNS) in community palliative care in the Central Lancashire area of England when the CNS service was extended to a 9am-to-5pm 7-day service. A project group was set up to canvas some of the key stakeholders for their views on the extension of the service. The group undertook a literature search, a telephone survey of services in other areas that were providing this level of service, and interviews to ascertain the views of district nurses in the locality of the proposed service extension. The extension of service has long been advocated and was one of the key recommendations in the UK Department of Health's peer-review process. Such an extension was implemented following the research phase and was then evaluated by the project lead and the community services manager. The extension was found to be effective in the ongoing monitoring and support of patients. Anecdotally, the CNS team also felt it had been proactive in preventing unnecessary hospital admissions, although this specific aspect is difficult to quantify. This article looks at how the service was developed, how it has evolved over time, and how it works today. Consideration is also given to benefits and limitations. PMID:24356506

  19. An interdisciplinary approach to a day-long palliative care course for undergraduate students

    PubMed Central

    Latimer, E J; Deakin, A; Ingram, C; O'Brien, L; Smoke, M; Wishart, L

    1999-01-01

    Although it is desirable that students in the health sciences be educated together to prepare them for interdisciplinary practice, many educational programs remain discipline specific. An undergraduate course in palliative care, originally designed for medical students at McMaster University, Hamilton, Ont., was expanded in 1993 to include students from various health sciences programs in the region. The course introduces students to the components of palliative care and its interdisciplinary nature in a problem-based way and directs students to additional educational resources. The authors describe the planning, content and evaluation of the course material. The observed decline in attendance by medical students, which coincided with the introduction of the interdisciplinary format, warrants further investigation. Future directions of the course are discussed. PMID:10513281

  20. Palliative care - managing pain

    MedlinePlus

    End of life - pain management; Hospice - pain management ... Bookbinder M, McHugh ME. Symptom management in palliative care and end of life care. Nurs Clin North Am . 2010;45:271-327. Mercadente S. Challenging pain problems. In: ...

  1. 'Good palliative care' orders.

    PubMed

    Maddocks, I

    1993-01-01

    A Select Committee of the Parliament of South Australia, considering revisions to legislation governing care of the dying, did not support allowing doctors to assist suicide. They recommended that no liability attach to the provision of reasonable palliative care which happens to shorten life. The Committee affirmed the suggestion that positive open orders to provide 'good palliative care' should replace 'do not resuscitate' orders. PMID:7506978

  2. 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

  3. [Palliative care in neurology].

    PubMed

    Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo

    2015-07-01

    Palliative care in neurology is characterized by the need of taking into account some distinguishing features which supplement and often differ from the general palliative approach to cancer or to severe organ failures. Such position is emphasized by a new concept of palliative assistance which is not limited to the "end of life" stage, as it was the traditional one, but is applied along the entire course of progressive, life-limiting, and disabling conditions. There are various reasons accounting for a differentiation of palliative care in neurology and for the development of specific expertise; the long duration of the advanced stages of many neurological diseases and the distinguishing features of some clinical problems (cognitive disorders, psychic disorders, etc.), in addition to the deterioration of some general aspects (nutrition, etc.), make the general criteria adopted for cancer, severe respiratory, hepatic or renal failures and heart failure inadequate. The neurological diseases which could benefit from the development of a specific palliative approach are dementia, cerebrovascular diseases, movement disorders, neuromuscular diseases, severe traumatic brain injury, brain cancers and multiple sclerosis, as well as less frequent conditions. The growing literature on palliative care in neurology provides evidence of the neurological community's increasing interest in taking care of the advanced and terminal stages of nervous system diseases, thus encouraging research, training and updating in such direction. This document aims to underline the specific neurological requirements concerning the palliative assistance. PMID:26228722

  4. Integrating Palliative Care into Primary Care.

    PubMed

    Gorman, Rosemary D

    2016-09-01

    Improved quality of life, care consistent with patient goals of care, and decreased health care spending are benefits of palliative care. Palliative care is appropriate for anyone with a serious illness. Advances in technology and pharmaceuticals have resulted in increasing numbers of seriously ill individuals, many with a high symptom burden. The numbers of individuals who could benefit from palliative care far outweighs the number of palliative care specialists. To integrate palliative care into primary care it is essential that resources are available to improve generalist palliative care skills, identify appropriate patients and refer complex patients to specialist palliative care providers. PMID:27497014

  5. [Palliative care - also in geriatrics?].

    PubMed

    Sandgathe Husebø, B; Husebø, S

    2001-10-01

    Red Cross Clinic is the largest geriatric center in Norway (240 beds). Major parts of the center are: long time geriatric ward (215 beds), rehabilitation and acute ward (25 beds), day clinic (45 patients) and a teaching and research unit. A palliative care unit (10 beds) will be opened in spring 2000. In mai 1998 a national project: Palliative care for the elderly was opened at our center. The projects main goal is to develop and support proper palliative care to all severe ill and dying patients in Norway. In a prospective study we examined 179 consecutive deaths between 1998 and 1999. Average age was 84.5. Major symptom problems were pain, dyspnoea, death-rattle and anxiety. In the last 24 hours 83% of the patients received opioids, 67% of the cases morphine (mean daily dosage 31.8 mg). 37% of the patients received scopolamine (mean daily dosage 0.8 mg), 12% benzodiazepines and 3% of the patients haloperidol. 152 (85%) of the deaths were expected, 27 (15%) unexpected. In 137 patients (77%) open, honest, frank communication with patient or their nearest kin regarding the imminent death was possible. In our experience it is a myth that the relatives want doctors to practise "maximal therapy". All old patients in geriatric clinics and nursing homes need palliative care. We have found no international textbooks of geriatrics with chapters on palliative care or textbooks on palliative care with chapters on the elderly. They need doctors and nurses who are properly trained and educated in palliative care. In most countries in Europe this training and education is not provided. PMID:11810376

  6. 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 ...

  7. Palliative Care in Heart Failure.

    PubMed

    Hupcey, Judith E; Kitko, Lisa; Alonso, Windy

    2015-12-01

    The number of patients with heart failure is growing; the associated morbidity and mortality remains dismal. Advance care planning, end-of-life conversations, and palliative care referrals are appropriate, but do not occur regularly. Palliative care focuses on patients and families from diagnosis, to hospice, death, and bereavement. It is delivered as basic palliative care by all providers and by specialty-certified palliative care specialists. Nurses are well-positioned to provide basic. Nurses are also instrumental in initiating referrals to the specialized palliative care team as the patient's needs become too complex or the disease progresses and the patient approaches the end of life. PMID:26567500

  8. Grief and Palliative Care: Mutuality

    PubMed Central

    Moon, Paul J

    2013-01-01

    Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and palliative care related to end-of-life circumstances. Specifically, the complementarity of grief and palliative care, as well as a controvertible view thereof, will be considered. PMID:25278758

  9. Palliative care and pulmonary rehabilitation.

    PubMed

    Janssen, Daisy J A; McCormick, James R

    2014-06-01

    Numerous barriers exist to the timely introduction of palliative care in patients with advanced chronic obstructive pulmonary disease (COPD). The complex needs of patients with advanced COPD require the integration of curative-restorative care and palliative care. Palliative care and pulmonary rehabilitation are both important components of integrated care for patients with chronic respiratory diseases. Pulmonary rehabilitation provides the opportunity to introduce palliative care by implementing education about advance care planning. Education about advance care planning addresses the information needs of patients and can be an effective strategy to promote patient-physician discussion about these issues. PMID:24874135

  10. Interaction of palliative care and primary care.

    PubMed

    Ghosh, Amrita; Dzeng, Elizabeth; Cheng, M Jennifer

    2015-05-01

    Primary care physicians are often the first medical providers patients seek out, and are in an excellent position to provide primary palliative care. Primary palliative care encompasses basic skills including basic evaluation and management of symptoms and discussions about goals of care and advance care planning. Specialty palliative care consultation complements primary care by assisting with complex psychosocial-spiritual patient and family situations. This article reviews primary palliative care skill sets and criteria for when to consider referring patients to specialty palliative care and hospice services. PMID:25920056

  11. Improving Palliative Cancer Care.

    PubMed

    Del Ferraro, Catherine; Ferrell, Betty; Van Zyl, Carin; Freeman, Bonnie; Klein, Linda

    2014-01-01

    Over a decade ago, the Institute of Medicine (IOM) presented Ensuring Quality Cancer Care in the United States, with recommendations for change (IOM, 1999). However, barriers to integrating palliative care (PC) to achieve high-quality care in cancer still remain. As novel therapeutic agents evolve, patients are living longer, and advanced cancer is now considered a chronic illness. In addition to complex symptom concerns, patients and family caregivers are burdened with psychological, social, and spiritual distress. Furthermore, data show that PC continues to be underutilized and inaccessible, and current innovative models of integrating PC into standard cancer care lack uniformity. The aim of this article is to address the existing barriers in implementing PC into our cancer care delivery system and discuss how the oncology advanced practice nurse plays an essential role in providing high-quality cancer care. We also review the IOM recommendations; highlight the work done by the National Consensus Project in promoting quality PC; and discuss a National Cancer Institute-funded program project currently conducted at a National Comprehensive Cancer Center, "Palliative Care for Quality of Life and Symptoms Concerns in Lung Cancer," which serves as a model to promote high-quality care for patients and their families. PMID:26114013

  12. 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

  13. [Palliative care for glioblastoma].

    PubMed

    Dieudonné, Nathalie; De Micheli, Rita; Hottinger, Andreas

    2016-04-27

    Patients with glioblastoma have a limited life expectancy and an impaired quality of life and they should be offered palliative care soon after the diagnosis is established. Still, only a quarter of patients aged over 65 return home or medical institution after completing treatments. Home care must be promoted by coordinating assistance and care, combining disciplines such as physiotherapy and ergotherapy, medical and nursing care and psychosocial support. Patients are at risk of mood, personality and behavioural disorders. Limited awareness of these troubles and their physical limitations alter their capacity of rehabilitation and social relationships. Isolation of relatives, exhaustion and misunderstandings should be prevented. The therapeutic goals should be discussed and determined upstream to anticipate difficulties and questions concerning end of life. PMID:27281945

  14. Palliative care - shortness of breath

    MedlinePlus

    ... to control shortness of breath: Call your doctor, palliative care team, or hospice nurse for advice Call 911 ... Bicanovsky L. Comfort care: symptom control in the dying. In: Walsh ... . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap 181.

  15. A pilot study into the use of a multisensory environment (Snoezelen) within a palliative day-care setting.

    PubMed

    Schofield, Patricia; Payne, Sheila

    2003-03-01

    Sensory environments may potentially provide an atmosphere of calm and refreshment. This small pilot study used a randomized controlled trial (RCT) design and semi-structured interviews to investigate the use of the Snoezelen multisensory environment in palliative day care. Its second aim was to explore the feasibility of the RCT design in advance of a possible larger trial. The study compared Snoezelen with a normal 'quiet room' setting. Following screening for anxiety, 26 patients were recruited and randomly assigned to the control of experimental group. Anxiety and depression were assessed using the Hospital Anxiety and Depression scale and quality of life assessed using the European Organisation for Research and Treatment of Cancer Core 30 questionnaire. A significant reduction in anxiety was seen with the experimental group (P=0.01) but no changes were observed in any of the quality-of-life subscales. However, the results should be viewed with caution, as there were some differences between the groups in two of the quality-of-life subscales. Data from semi-structured interviews suggested Snoezelen might promote relaxation. It is concluded that Snoezelen is feasible for use with this patient group and recommendations are made for further research. PMID:12682575

  16. Team networking in palliative care.

    PubMed

    Spruyt, Odette

    2011-01-01

    "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

  17. Training Physicians in Palliative Care.

    ERIC Educational Resources Information Center

    Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.

    1999-01-01

    Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)

  18. New Symptom-Based Predictive Tool for Survival at Seven and Thirty Days Developed by Palliative Home Care Teams

    PubMed Central

    Bescos, Mar; Barcons, Miquel; Torrubia, Pilar; Trujillano, Javier; Requena, Antonio

    2014-01-01

    Abstract Aim: This study sought to develop models to predict survival at 7 and 30 days based on symptoms detected by palliative home care teams (PHCTs). Materials and methods: This prospective analytic study included a 6-month recruitment period with patient monitoring until death or 180 days after recruitment. The inclusion criteria consisted of age greater than 18 years, advanced cancer, and treatment provided by participating PHCTs between April and July 2009. The study variables included death at 7 or 30 days, survival time, age, gender, place of residence, type of tumor and extension, presence of 11 signs and symptoms measured with a 0–3 Likert scale, functional and cognitive status, and use of a subcutaneous butterfly needle. The statistics applied included a descriptive analysis according to the percentage or mean±standard deviation. For symptom comparison between surviving and nonsurviving patients, the χ2 test was used. Classification and regression tree (CART) methodology was used for model development. An internal validation system (cross-validation with 10 partitions) was used to ensure generalization of the models. The area under the receiver operating characteristics (ROC) curve was calculated (with a 95% confidence interval) to assess the validation of the models. Results: A total of 698 patients were included. The mean age of the patients was 73.7±12 years, and 60.3% were male. The most frequent type of neoplasm was digestive (37.6%). The mean Karnofsky score was 51.8±14, the patients' cognitive status according to the Pfeiffer test was 2.6±4 errors, and 8.3% of patients required a subcutaneous butterfly needle. Each model provided 8 decision rules with a probability assignment range between 2.2% and 99.1%. The model used to predict the probability of death at 7 days included the presence of anorexia and dysphagia and the level of consciousness, and this model produced areas under the curve (AUCs) of 0.88 (0.86–0.90) and 0.81 (0.79–0

  19. Integrating palliative care into comprehensive cancer care.

    PubMed

    Abrahm, Janet L

    2012-10-01

    While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care. PMID:23054873

  20. Pediatric palliative care

    PubMed Central

    Benini, Franca; Spizzichino, Marco; Trapanotto, Manuela; Ferrante, Anna

    2008-01-01

    The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices) and two based at home (the so-called home-based hospitalization and integrated home-based care programs). Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected. PMID:19490656

  1. Posthumous Reproduction and Palliative Care

    PubMed Central

    Quinn, Gwendolyn; Bower, Bethanne; Zoloth, Laurie

    2011-01-01

    Abstract Posthumous reproduction is an issue fraught with legal, ethical, religious, and moral debate. The involvement of the hospice and palliative care community in this debate may be peripheral due to the fact that other health care professionals would be actually delivering the services. However, the hospice and palliative care community are more likely to treat patients considering posthumous reproduction as they near the end of their lives. This article provides the hospice and palliative care community with a review of the medical, ethical, and legal considerations associated with posthumous reproduction. Having knowledge of these issues, and a list of available resources, will be useful if hospice and palliative care staff find themselves facing a patient or family that is considering posthumous reproduction. PMID:21711126

  2. Palliative Care: Video Tells a Mother's Story of Caring Support

    MedlinePlus

    ... this page please turn JavaScript on. Feature: Palliative Care Video Tells a Mother's Story of Caring Support ... the treatment …" Frequently Asked Questions What is palliative care, and when is it provided? Palliative care combines ...

  3. Health care interactional suffering in palliative care.

    PubMed

    Beng, Tan Seng; Guan, Ng Chong; Jane, Lim Ee; Chin, Loh Ee

    2014-05-01

    A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care. PMID:23689367

  4. Spirituality in geriatric palliative care.

    PubMed

    Puchalski, Christina M

    2015-05-01

    This article presents an overview of spirituality as an essential domain of geriatrics palliative care, and provides guidelines for clinicians to diagnose spiritual distress and to integrate spirituality into their clinical practice. PMID:25920059

  5. The growth of palliative care.

    PubMed

    Strand, Jacob J; Mansel, J Keith; Swetz, Keith M

    2014-06-01

    Palliative care specialists focus on meeting the needs of patients with serious and/or life-threatening illnesses. These physicians have expertise in managing complex pain and nonpain symptoms, providing psychosocial and spiritual support to patients and their families, and communicating about complex topics and advance care planning. The American Board of Medical Specialties has allowed 10 of its member boards to co-sponsor certification in Hospice and Palliative Medicine. Thus, physicians from specialties ranging from pediatrics to surgery now practice hospice and palliative medicine. At the core of this field, however, are physicians who trained as internists and are boarded by the American Board of Internal Medicine. This article discusses the central principles of palliative care and explores its growth in two areas: oncology and critical care medicine. PMID:25029799

  6. Rawlsian Justice and Palliative Care.

    PubMed

    Knight, Carl; Albertsen, Andreas

    2015-10-01

    Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare. We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive. PMID:25689627

  7. Is Palliative Care Right for You?

    MedlinePlus

    ... medical care Understanding the pros and cons (benefits/burdens) of treatments (e.g., dialysis, additional cancer treatments, ... the Media For Clinicians For Policymakers For Family Caregivers What Is Palliative Care Definition Pediatric Palliative Care ...

  8. Palliative care in advanced dementia.

    PubMed

    Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

    2014-08-01

    Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. PMID:25037291

  9. Palliative Care: What You Should Know

    MedlinePlus

    ... Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a ... help you. 3 ? Ask for it! Tell your doctors, nurses, family and caregivers that you want palliative care. ...

  10. Pediatric Palliative Care: A Personal Story

    MedlinePlus Videos and Cool Tools

    ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 250 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  11. Day Care.

    ERIC Educational Resources Information Center

    Merro, John; And Others

    Interviews on the quality of day care in the United States are presented in this transcript of a program broadcast in the National Public Radio weekly series, "Options in Education." Writers, day care center personnel and others describe and evaluate the current situation. Federal legislation concerning children is examined, and researchers…

  12. Reduction of psycho-spiritual distress of an elderly with advanced congestive heart failure by life review interview in a palliative care day center

    PubMed Central

    Chan, Kwok-Ying; Lau, Vikki Wai-Kee; Cheung, Ka-Chi; Chang, Richard Shek-Kwan; Chan, Man-Lui

    2016-01-01

    Objectives: Major depression is common in patients hospitalized with congestive heart failure and is independently associated with increased re-hospitalization and mortality. Methods: Hereby, we report the treatment for an elderly congestive heart failure patient with frequent emergency department visits having major depression and hopelessness. Results: Treatment outcomes measured showed that depressed scores of psychosocial needs were reduced with life review interview therapy in a palliative care day center. Conclusion: We hypothesize that multidisciplinary team’s approach to treatment was important for this case. PMID:27621805

  13. Palliative Care in Lung Cancer.

    PubMed

    Shinde, Arvind M; Dashti, Azadeh

    2016-01-01

    Lung cancer is the most common cancer worldwide and is the leading cause of cancer death for both men and women in the USA. Symptom burden in patients with advanced lung cancer is very high and has a negative impact on their quality of life (QOL). Palliative care with its focus on the management of symptoms and addressing physical, psychosocial, spiritual, and existential suffering, as well as medically appropriate goal setting and open communication with patients and families, significantly adds to the quality of care received by advanced lung cancer patients. The Provisional Clinical Opinion (PCO) of American Society of Clinical Oncology (ASCO) as well as the National Cancer Care Network's (NCCN) clinical practice guidelines recommends early integration of palliative care into routine cancer care. In this chapter, we will provide an overview of palliative care in lung cancer and will examine the evidence and recommendations with regard to a comprehensive and interdisciplinary approach to symptom management, as well as discussions of goals of care, advance care planning, and care preferences. PMID:27535397

  14. Hearing Loss in Palliative Care

    PubMed Central

    Jain, Nelia; Wallhagen, Margaret L.

    2015-01-01

    Abstract Background: Age-related hearing loss is remarkably common, affecting more than 60% of adults over the age of 75. Moreover, hearing loss has detrimental effects on quality of life and communication, outcomes that are central to palliative care. Despite its high prevalence, there is remarkably little written on the impact of hearing loss in the palliative care literature. Objective: The objective was to emphasize its importance and the need for further study. We use a case as a springboard for discussing what is known and unknown about the epidemiology, presentation, screening methodologies, and treatment strategies for age-related hearing loss in palliative care. Discussion: The case describes a 65-year-old man with acute myelogenous leukemia (AML) that has progressed despite treatment. No concerns are raised about communication challenges during conversations between the palliative care team and the patient in his quiet room. However, in the midst of a family meeting, shortly after discussing prognosis, the patient reports that he cannot hear what anyone is saying. Conclusion: We describe simple methods of screening patients for hearing loss, and suggest that practical approaches should be used universally in patient encounters. These include facing the patient, pitching one's voice low, using a pocket talker, and creating a hearing-friendly environment when planning a family or group meeting. PMID:25867966

  15. On the palliative care unit.

    PubMed

    Selwyn, Peter A

    2016-06-01

    As a physician working in palliative care, the author is often privileged to share special moments with patients and their families at the end of life. This haiku poem recalls one such moment in that precious space between life and death, as an elderly woman, surrounded by her adult daughters, takes her last breath. (PsycINFO Database Record PMID:27270255

  16. Palliative Care: A Holistic Discipline.

    PubMed

    Greer, Steven; Joseph, Marie

    2016-03-01

    Although mind and body are inextricably interwoven, psychological factors have received insufficient attention within medicine. The biomedical model though necessary is not sufficient. In medicine and particularly in palliative care, a holistic biopsychosocial approach is required. A number of examples from clinical practice in a hospice setting are presented. PMID:26631259

  17. Palliative care: an evolving field in medicine.

    PubMed

    Eti, Serife

    2011-06-01

    Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial, and spiritual. This article discusses illness trajectories and prognostic estimates, prognostic tools, educating physicians and nurses in palliative care, research in palliative medicine, and palliative care in hospitals and the community. PMID:21628032

  18. [Malignant wounds in palliative care].

    PubMed

    Fromantin, Isabelle; Rollot, Florence; Nicodeme, Marguerite; Kriegel, Iréne

    2015-01-01

    In the alsence of effective cancer treatment, malignant wounds evolve. The decisions taken by the multi-disciplinary team with regard to their care vary depending on whether the patient is in the initial, advanced or terminal phase of palliative care. Modern dressings can be used to control bleeding, odours and drainage. The aim is to control the symptoms and improve the quality of life, until its end. PMID:26027186

  19. 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. PMID:25296488

  20. Music therapy in palliative care.

    PubMed Central

    Munro, S.; Mount, B.

    1978-01-01

    Initial observations regarding the use of music therapy at one hospital in the palliative care of patients with advanced malignant disease are presented. In the hands of a trained music therapist, music has proven to be a potent tool for improving the quality of life. The diversity of its potential is particularly suited to the deversity of the challenges - physical, psychosocial and spiritual - that these patients present. Images FIG. 1 PMID:84704

  1. Palliative Care in Musculoskeletal Oncology.

    PubMed

    Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar

    2016-01-01

    Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251

  2. Palliative Care in Musculoskeletal Oncology

    PubMed Central

    Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar

    2016-01-01

    Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251

  3. Enhancing family physician capacity to deliver quality palliative home care

    PubMed Central

    Marshall, Denise; Howell, Doris; Brazil, Kevin; Howard, Michelle; Taniguchi, Alan

    2008-01-01

    ABSTRACT PROBLEM BEING ADDRESSED Family physicians face innumerable challenges to delivering quality palliative home care to meet the complex needs of end-of-life patients and their families. OBJECTIVE OF PROGRAM To implement a model of shared care to enhance family physicians’ ability to deliver quality palliative home care, particularly in a community-based setting. PROGRAM DESCRIPTION Family physicians in 3 group practices (N = 21) in Ontario’s Niagara West region collaborated with an interprofessional palliative care team (including a palliative care advanced practice nurse, a palliative medicine physician, a bereavement counselor, a psychosocial-spiritual advisor, and a case manager) in a shared-care partnership to provide comprehensive palliative home care. Key features of the program included systematic and timely identification of end-of-life patients, needs assessments, symptom and psychosocial support interventions, regular communication between team members, and coordinated care guided by outcome-based assessment in the home. In addition, educational initiatives were provided to enhance family physicians’ knowledge and skills. CONCLUSION Because of the program, participants reported improved communication, effective interprofessional collaboration, and the capacity to deliver palliative home care, 24 hours a day, 7 days a week, to end-of-life patients in the community. PMID:19074714

  4. Surgical palliative care in Haiti.

    PubMed

    Huffman, Joan L

    2011-04-01

    Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten. PMID:21419263

  5. Turkish healthcare professionals' views on palliative care.

    PubMed

    Turgay, Gulay; Kav, Sultan

    2012-01-01

    The concept of modern palliative care has been disseminating slowly in Turkey and has recently been included in the National Cancer Control Program. The aim of this study was to explore healthcare professionals' knowledge and views of palliative care. It was conducted at three hospitals with a sample of 369 healthcare professionals working in adult clinics. Data were collected via open-ended questions and 16 statements from healthcare professionals on their views of palliative care. Most respondents stated that there was a lack of in-service/continuing education in palliative care, and more than half said they had not received any education in palliative care. A majority stated that the meaning and goal of palliative care is "improving the quality of life of a patient who is in the terminal stage." Lack of awareness of palliative care and a lack of educational resources in that field are the most frequently reported barriers to the development of palliative care in Turkey. Palliative care should be included in curricula for healthcare professionals and in-service education programs should be established. PMID:23413762

  6. Palliative dental care- a boon for debilitating.

    PubMed

    Mulk, Bhavana Sujana; Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

    2014-06-01

    World Health Organization defines "palliative care" as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

  7. Current trends in palliative heart care.

    PubMed

    Shi, Rongyun

    2016-02-01

    Palliative care is an alternate therapeutic approach that involves specialised medical care of a patient diagnosed with serious life threatening illness like heart failure (HF). The prime aim of the palliative care is to provide patient with relief from the symptoms, pain, physical stress, and mental stress of the diagnosed disease. The palliative care helps in improving the quality of life for both the patient and the family. Advanced HF is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. The present review summarized all the available on alternative palliative approaches provided to heart patient by a team of physicians, nurses and other healthcare professionals. PMID:25926080

  8. Palliative Dental Care- A Boon for Debilitating

    PubMed Central

    Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

    2014-01-01

    World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

  9. Palliative care in chronic obstructive pulmonary disease.

    PubMed

    Lilly, Evan J; Senderovich, Helen

    2016-10-01

    Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development. PMID:27481751

  10. Growing Pains: Palliative Care Making Gains

    Cancer.gov

    An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.

  11. Training Advanced Practice Palliative Care Nurses.

    ERIC Educational Resources Information Center

    Sherman, Deborah Witt

    1999-01-01

    Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)

  12. Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care professionals in London.

    PubMed

    Tuffrey-Wijne, I; McEnhill, L; Curfs, L; Hollins, S

    2007-09-01

    Growing numbers of people with intellectual disabilities (ID) are in need of palliative care, but there is inequity of access to palliative care services for this group. This study investigates the issues and difficulties arising for palliative care staff in providing care for people with ID. Semi-structured interviews were conducted with 32 palliative care professionals in London. Factors affecting palliative care provision for people with ID included social issues (home situation and family issues), emotional and cognitive issues (fear, patient understanding, communication, cooperation and capacity to consent), problems with assessment, and the impact on staff and other patients. An underlying theme was the need to take more time and to build trust. Despite the challenges, many palliative care staff managed the care of people with ID well. The importance of collaboration with carers and ID services is highlighted. Further studies are needed to investigate how widespread the problems are. PMID:17846089

  13. Negotiating futility, managing emotions: nursing the transition to palliative care.

    PubMed

    Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet

    2015-03-01

    Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work. PMID:25246331

  14. Nurturing humanism through teaching palliative care.

    PubMed

    Block, S; Billings, J A

    1998-07-01

    After many years of neglect by the medical establishment, the discipline of palliative medicine is finally moving into academic health centers (AHCs). While hospice programs have cared for dying patients in the community for years with little input from mainstream medicine, palliative care is gaining a foothold in AHCs, challenging these centers to integrate the hospice approach with biomedicine. The discipline of palliative care promises to be a rich source of learning and growth for physicians-in-training. Teaching about palliative care affirms two essential but vulnerable dimensions of the practice of medicine--the importance of relationship-centered care and the value of doctoring as a source of meaning and growth for physicians. In addition to fostering fundamental humanistic learning, palliative medicine is an excellent vehicle for teaching basic but often neglected clinical competencies, including pain and symptom control, communication, and working as part of a health care team. Because palliative care settings offer extraordinary learning opportunities, the authors recommend that clinical experiences in palliative care be integrated into the core curricula of all medical schools as well as appropriate residency programs. PMID:9679465

  15. Palliative care - fluid, food, and digestion

    MedlinePlus

    ... J. Martin, MD, MPH, ABIM Board Certified in Internal Medicine and Hospice and Palliative Medicine, Atlanta, GA. Also reviewed by David Zieve, MD, MHA, Isla Ogilvie, PhD, and the A.D.A.M. Editorial team. Related MedlinePlus Health Topics Palliative Care Browse the Encyclopedia A.D. ...

  16. Palliative care reimagined: a needed shift.

    PubMed

    Abel, Julian; Kellehear, Allan

    2016-03-01

    Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care. PMID:26832803

  17. Medical use of marijuana in palliative care.

    PubMed

    Johannigman, Suzanne; Eschiti, Valerie

    2013-08-01

    Marijuana has been documented to provide relief to patients in palliative care. However, healthcare providers should use caution when discussing medical marijuana use with patients. This article features a case study that reveals the complexity of medical marijuana use. For oncology nurses to offer high-quality care, examining the pros and cons of medical marijuana use in the palliative care setting is important. PMID:23899972

  18. Palliative Care in Advanced Lung Disease: The Challenge of Integrating Palliation Into Everyday Care.

    PubMed

    Rocker, Graeme M; Simpson, A Catherine; Horton, Robert

    2015-09-01

    The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery. PMID:25742140

  19. Palliative Care Patients in the Emergency Department

    PubMed Central

    LAWSON, BEVERLEY J.; BURGE, FREDERICK I.; MCINTYRE, PAUL; FIELD, SIMON; MAXWELL, DAVID

    2016-01-01

    Although end-of-life care is not a primary function of the emergency department (ED), in reality, many access this department in the later stages of illness. In this study, ED use by patients registered with the Capital Health Integrated Palliative Care Service (CHIPCS) is examined and CHIPCS patient characteristics associated with ED use identified. Overall, 27% of patients made at least one ED visit while registered with CHIPCS; 54% of these resulted in a hospital admission. ED visiting was not associated with time of day or day of the week. Multivariate logistic regression results suggest older patients were significantly less likely to make an ED visit. Making an ED visit was associated with hospital death, rural residence (particularly for women), and having a parent or relative other than a spouse or child as the primary caregiver. Further research may suggest strategies to reduce unnecessary ED visits during the end of life. PMID:19227016

  20. Palliative Care in Rural Minnesota: Findings from Stratis Health's Minnesota Rural Palliative Care Initiative.

    PubMed

    McKinley, Deb; Shearer, Janelle; Weng, Karla

    2016-01-01

    Palliative care, which involves managing symptoms, controlling pain and addressing stress caused by a chronic or terminal illness, has been shown to keep patients out of the hospital and allow them to stay home and live more comfortably with their illness. Typically, it is provided by an interdisciplinary team led by a physician trained in palliative medicine. Rural areas have not always had access to such specialists. Yet, today, rural health care organizations are finding ways to create palliative care programs that meet the needs of their chronically ill and aging populations. This article describes a six-year initiative led by Stratis Health to advance palliative care in rural Minnesota. It highlights the work of FirstLight Health System in Mora and describes Stratis Health's Rural Palliative Care Measurement Pilot Project, an effort to develop and test measures for evaluating rural palliative care programs. PMID:26897897

  1. What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

    PubMed Central

    Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H

    2016-01-01

    Objective The aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician. Methods The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. Results The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. Conclusions The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care. PMID:27389693

  2. The Island Hospice model of palliative care

    PubMed Central

    Khumalo, Thembelihle; Maasdorp, Valerie

    2016-01-01

    There has been a substantial increase in cancer detections in Africa over years, and it has also been noted that higher number of individuals are affected by the later stages of cancer that lead to death. When it comes to cancer care, Zimbabwe is no exception with its ongoing palliative care related research, though still in its infancy. The need for advanced and more accessible palliative care to assist the vulnerable has been intensified by this increase in cancer prevalence. Island Hospice, which is a centre of excellence in palliative care has varying elements of the models that it employs to engage those most in need of palliative assistance, especially children and financially-challenged individuals. PMID:27563349

  3. National Hospice and Palliative Care Organization

    MedlinePlus

    ... Strategic Planning for Hospice Hospice Policy and Advocacy Healthcare Reform and Innovation Inspirational Address Booking Policies Contact NHPCO ... Webinar Registration MP4 Recordings Pay for CE/CME Online Learning E-OL Courses Interdisciplinary Team Palliative Care ...

  4. The Island Hospice model of palliative care.

    PubMed

    Khumalo, Thembelihle; Maasdorp, Valerie

    2016-01-01

    There has been a substantial increase in cancer detections in Africa over years, and it has also been noted that higher number of individuals are affected by the later stages of cancer that lead to death. When it comes to cancer care, Zimbabwe is no exception with its ongoing palliative care related research, though still in its infancy. The need for advanced and more accessible palliative care to assist the vulnerable has been intensified by this increase in cancer prevalence. Island Hospice, which is a centre of excellence in palliative care has varying elements of the models that it employs to engage those most in need of palliative assistance, especially children and financially-challenged individuals. PMID:27563349

  5. Integrating palliative care with usual care of diabetic foot wounds.

    PubMed

    Dunning, Trisha

    2016-01-01

    Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction. PMID:26813620

  6. Pediatric Palliative Care in the Intensive Care Unit.

    PubMed

    Madden, Kevin; Wolfe, Joanne; Collura, Christopher

    2015-09-01

    The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice. PMID:26333755

  7. Palliative care in patients with heart failure.

    PubMed

    McIlvennan, Colleen K; Allen, Larry A

    2016-01-01

    Despite advances in cardiac therapy, heart failure (HF) remains a progressive, highly symptomatic, and deadly disease that places great demands on patients, caregivers, and healthcare systems. Palliative care is a multidisciplinary approach to care that focuses on communication, shared decision making, and advance care planning; provides relief from pain and other distressing symptoms; integrates psychological and spiritual aspects of care; and offers a support system to help families cope during illness and bereavement. Palliative care has applications across the stages of heart failure, including early in the course of illness, often in conjunction with other therapies that are intended to prolong life. However, the incorporation of palliative care into the management of heart failure has been suboptimal for several reasons: uncertainty in the disease trajectory, failure to reward communication between healthcare providers and patients, siloed care, lack of knowledge, overlay of comorbidity and frailty, life saving devices with complex trade-offs, and a limited evidence base. This review will summarize the current literature on the emerging role of palliative care in patients with heart failure and the challenges and opportunities for its integration into routine care. It will discuss current initiatives and future directions of the collaborative relationship between the palliative care and heart failure disciplines. PMID:27079896

  8. Palliative Home Care: A Designer's Perspective.

    PubMed

    Bhatnagar, Tigmanshu

    2015-01-01

    The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice. PMID:26009683

  9. Pulmonary medicine and palliative care.

    PubMed

    Tucakovic, M; Bascom, R; Bascom, P B

    2001-04-01

    Gynaecological malignancies affect the respiratory system both directly and indirectly. Malignant pleural effusion is a poor prognostic factor: management options include repeated thoracentesis, chemical pleurodesis, symptomatic relief of dyspnoea with oxygen and morphine, and external drainage. Parenchymal metastases are typically multifocal and respond to chemotherapy, with a limited role for pulmonary metastatectomy. Pulmonary tumour embolism is frequently associated with lymphangitic carcinomatosis, and is most common in choriocarcinoma. Thromboembolic disease, associated with the hypercoagulable state of cancer, is treated with anticoagulation. Inferior vena cava filter placement is indicated when anticoagulation cannot be given, or when emboli recur despite adequate anticoagulation. Palliative care has a major role for respiratory symptoms of gynaecological malignancies. Treatable causes of dyspnoea include bronchospasm, fluid overload and retained secretions. Opiates are effective at relieving dyspnoea associated with effusions, metatases, and lymphangitic tumour spread. Non-pharmacological therapies include energy conservation, home redesign, and dyspnoea relief strategies, including pursed lip breathing, relaxation, oxygen, circulation of air with a fan, and attention to spiritual suffering. Identification and treatment of gastroesophageal reflux, sinusitis, and asthma can improve many patients' coughs. Chest wall pain responds to local radiotherapy, nerve blocks or systemic analgesia. Case examples illustrate ways to address quality of life issues. PMID:11358403

  10. Integrating palliative care into the trajectory of cancer care.

    PubMed

    Hui, David; Bruera, Eduardo

    2016-03-01

    Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, illness understanding, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We also discuss how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

  11. Integrating palliative care into the trajectory of cancer care

    PubMed Central

    Hui, David; Bruera, Eduardo

    2016-01-01

    Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

  12. Respect for persons, autonomy and palliative care.

    PubMed

    Woods, Simon

    2005-01-01

    This paper explores some of the values that underpin health care and how these relate more specifically to the values and ethics of palliative care. The paper focuses on the concept of autonomy because autonomy has emerged as a foundational concept in contemporary health care ethics and because this is an opportunity to scratch the surface of this concept in order to reveal something of its complexity, a necessary precaution when applying the concept to the context of palliative care. The paper begins with a theoretical discussion of autonomy exploring an aspect of its contemporary meaning and relevance to health care. The second part of the paper focuses more closely on how the principle of respect for autonomy can be applied in the context of palliative care. In this section an ethical framework is employed to explore a practical application of this principle within a broader context of respect for persons. PMID:16215803

  13. Center to Advance Palliative Care

    MedlinePlus

    ... Learn More Overview Palliative in Practice Blog Report Card getpalliativecare.org Topics Topics of Interest CAPC ensures ... and Families Payer-Provider PCLC Pediatric Policy Report Card Seminar Membership Membership CAPC makes sure you never ...

  14. Compassion fatigue in pediatric palliative care providers.

    PubMed

    Rourke, Mary T

    2007-10-01

    The experience of compassion fatigue is an expected and common response to the professional task of routinely caring for children at the end of life. Symptoms of compassion fatigue often mimic trauma reactions. Implementing strategies that span personal, professional, and organizational domains can help protect health care providers from the damaging effects of compassion fatigue. Providing pediatric palliative care within a constructive and supportive team can help caregivers deal with the relational challenges of compassion fatigue. Finally, any consideration of the toll of providing pediatric palliative care must be balanced with a consideration of the parallel experience of compassion satisfaction. PMID:17933615

  15. Palliative Care: A Partnership Across the Continuum of Care.

    PubMed

    Spaulding, Aaron; Harrison, Debra A; Harrison, Jeffrey P

    2016-01-01

    Palliative care services are becoming more prevalent in the United States as greater portions of the population are requiring end-of-life services. Furthermore, recent policy changes and service foci have promoted more continuity and encompassing care. This study evaluates characteristics that distinguish hospitals with a palliative care program from hospitals without such a program in order to better define the markets and environments that promote the creation and usage of these programs. This study demonstrates that palliative care programs are more likely in communities with favorable economic factors and higher Medicare populations. Large hospitals with high occupancy rates and a high case mix index use palliative care programs to better meet patient needs and improve hospital efficiency. Managerial, nursing, and policy implications are discussed relating to further usage and implementation of palliative care programs. PMID:27455361

  16. Home Inotropes and Other Palliative Care.

    PubMed

    Ginwalla, Mahazarin

    2016-07-01

    Heart failure is a leading case of morbidity and mortality worldwide, and patients with advanced heart failure have limited options without any available cure. These options mainly include cardiac transplantation or mechanical circulatory support device implantation. Chronic home inotropes are an option in these patients for a variety of indications. This report discusses the use of chronic home inotropes in palliated heart failure patients and reviews the role of palliative care management in end-stage heart failure. PMID:27371519

  17. Methodologic issues in palliative care psychosocial research.

    PubMed

    Cassileth, B R; Lusk, E J

    1989-12-01

    The conduct of psychosocial research with palliative care patients or staff presents a major investigative challenge. The fragility of patients and their physical or cognitive limitations severely curtail the types of studies that are possible and the research methods that can be applied. A major limitation is that randomization, a critical experimental design feature, is rarely possible or ethical as a means of evaluating palliative care. However, even given the practical limitations of constructing a randomized experimental design, methodologically acceptable studies are possible, and methodologically inappropriate approaches can be avoided. Case reports (anecdotal studies) produce data that cannot be generalized to other patients. Single-test, no control group studies should be avoided for similar reasons. Acceptable research techniques that are feasible in the palliative care setting are renewed: careful research questions and associated hypotheses; determining appropriate sample sizes; developing comparison groups; selecting and evaluating an appropriate interview guide or questionnaire; avoiding interviewing bias, and so on. Moreover, it is necessary for the professional standing of palliative care that the exchange of information between palliative care staff and other health professionals be based upon scientifically sound studies. PMID:2614590

  18. Palliative care and the QALY problem.

    PubMed

    Hughes, Jonathan

    2005-12-01

    Practitioners of palliative care often argue for more resources to be provided by the state in order to lessen its reliance on charitable funding and to enable the services currently provided to some of those with terminal illnesses to be provided to all who would benefit from it. However, this is hard to justify on grounds of cost-effectiveness, since it is in the nature of palliative care that the benefits it brings to its patients are of short duration. In particular, palliative care fares badly under a policy of QALY-maximisation, since procedures which prevent premature death (provided the life is of reasonable quality) or improve quality of life for those with longer life expectancy will produce more QALYs. This paper examines various responses to this problem and argues that in order to justify increased resources for palliative care its advocates must reject the 'atomistic' view of the value of life implicit in the QALY approach in favour of a 'holistic' or 'narrative' account. This, however, has implications which advocates of palliative care may be reluctant to embrace. PMID:16435466

  19. Palliative Care Enrichment in Geropsychology Fellowships.

    ERIC Educational Resources Information Center

    Strauss, Gerald; Nelson, Barbara J.

    1996-01-01

    Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)

  20. Palliative Care for the Seriously Ill

    PubMed Central

    Kelley, Amy S.; Morrison, R. Sean

    2015-01-01

    Palliative care is the interdisciplinary specialty focused on improving quality of life for persons with serious illness and their families. Over the past decade,1 the field has undergone substantial growth and change, including an expanded evidence base, new care-delivery models, innovative payment mechanisms, and increasing public and professional awareness. PMID:26287850

  1. [The role of laughter in palliative care].

    PubMed

    Bégnon, Julie; Vigneron, Sylvie

    2015-03-01

    A team has studied the impact of laughter in palliative care. For the majority of caregivers, laughter is perceived as a complementary tool for supporting patients, but many are reluctant to use it. Patients, for their part, are receptive to it. Used in the correct doses, laughter can enrich care. PMID:26145138

  2. 78 FR 35942 - Proposed Collection; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-14

    ... HUMAN SERVICES National Institutes of Health Proposed Collection; Comment Request: Palliative Care.... Proposed Collection Palliative Care: Conversations Matter Evaluation -0925--New--National Institute of... developed Palliative Care: Conversations Matter, a pediatric palliative care campaign to address...

  3. Palliative Care as a Standard of Care in Pediatric Oncology.

    PubMed

    Weaver, Meaghann S; Heinze, Katherine E; Kelly, Katherine P; Wiener, Lori; Casey, Robert L; Bell, Cynthia J; Wolfe, Joanne; Garee, Amy M; Watson, Anne; Hinds, Pamela S

    2015-12-01

    The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members. PMID:26700928

  4. Pediatric Palliative Care: A Reflection on Terminology

    PubMed Central

    Bergstraesser, Eva

    2013-01-01

    The definition of palliative care is the cornerstone of a medical subspecialty that plays a particular role for all who need it, for all who practice it, and increasingly for those who try to understand it. The difficulties around the definition and terminology arise from problems in separating it from other concepts such as supportive care, constructs such as “palliative care is only about dying”, or, in children, the rather vague use of terms like life-threatening and life-limiting diseases. These weaknesses have been recognized and important steps have been taken. This review discusses current definitions as well as efforts to overcome their weaknesses and make the term palliative care—for both children and adults—more intelligible. PMID:25278760

  5. The Quality Imperative for Palliative Care

    PubMed Central

    Kamal, Arif H.; Hanson, Laura C.; Casarett, David J.; Dy, Sydney M.; Pantilat, Steven Z.; Lupu, Dale; Abernethy, Amy P.

    2015-01-01

    Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the United States shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), “here is what we do,” and increase the focus on “this is how well we do it” and “let’s see how we can do it better.” It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. PMID:25057987

  6. The quality imperative for palliative care.

    PubMed

    Kamal, Arif H; Hanson, Laura C; Casarett, David J; Dy, Sydney M; Pantilat, Steven Z; Lupu, Dale; Abernethy, Amy P

    2015-02-01

    Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the U.S. shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), "here is what we do," and increase the focus on "this is how well we do it" and "let us see how we can do it better." It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. PMID:25057987

  7. The Use of Descriptive Words and Metaphor in Patient and Carer Experience of Palliative Day Care: Secondary Analysis of a Qualitative Study

    PubMed Central

    Richardson, J; Grose, J

    2009-01-01

    Background: An independent evaluation of changes to the delivery of Palliative Day Services was carried out during 2006-2007 using interviews with service users. The analysis found that the words and metaphors employed by users of services emphasized their emotional response to the changes, and helped to explain their depth of feeling about their experiences, warranting further investigation. Aim: To conduct a secondary analysis on interview data collected for the Day Services Evaluation Study in order to understand how patients and their carers use descriptive words and metaphor when talking about their experiences of palliative day services. Methods: Interview transcripts from 40 patients and 8 carers were subjected to secondary thematic analysis. These were read individually and coded where metaphor or descriptive words had been used to emphasize the effect of the illness and the experiences of the Day Services. Findings: Examples of the metaphorical expressions and words used described the service as a ‘secure rock in a changing world’; transition was felt as ‘sadness’, a ‘betrayal’, with feelings that the changes were ‘bitter and twisted;’ and left ‘a black hole’. Post transition the mood had changed to acceptance ‘When life throws lemons at you, you make lemonade’. Conclusions: The metaphors and descriptive words used act as what we describe as ‘emotional intensifiers’ which provide a measure of the impact of the effect of illness, the effect of the day services on users and carers and the intensity of feeling during the time of transition. PMID:19587796

  8. Palliative care in the ambulatory geriatric practice.

    PubMed

    Finucane, Thomas E; Nirmalasari, Olivia; Graham, Antonio

    2015-05-01

    Geriatrics and palliative care often overlap. This article focuses on 2 areas where the disciplines may differ in their approach. The first is planning for extreme illness and death, with explicit acknowledgment that limiting therapy might be a good idea. This situation is likely to have a different impact in the course of a routine geriatrics visit than in a palliative care context. The second is pain management, especially chronic pain. In patients with sharply limited life expectancy, the risk/benefit equation tilts easily toward narcotic use. In frail elders working to remain independent, the calculus may be quite different. PMID:25920055

  9. [Legal basics in palliative care].

    PubMed

    Putz, Wolfgang

    2016-03-01

    The German legal framework concerning end of life decisions is based on two pillars: the medical standards and the patient's autonomy. Every medical treatment, including life-saving and palliative measures, requires medical indication and, crucially, the patient's consent. Without the patient's consent even medically indicated treatment is prohibited.In other cases, complying with the patient's wishes, doctors have to treat symptoms the best they can. This includes palliative sedation accepting that the indicated medication may shorten life.It is prohibited to actively kill a patient to shorten his suffering. Assisting a suicide is only permitted if the suicide decision is made freely and on the patient's own responsibility. Businesslike suicide assistance is prohibited. PMID:26983108

  10. Using Skype to support palliative care surveillance.

    PubMed

    Jones, Jacqueline

    2014-02-01

    The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care. PMID:24471549

  11. Research sensitivities to palliative care patients.

    PubMed

    Addington-Hall, J

    2002-09-01

    This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a 'palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views. PMID:12296842

  12. The palliative care clinical nurse consultant: an essential link.

    PubMed

    O'Connor, Margaret; Chapman, Ysanne

    2008-01-01

    This study describes the role of acute hospital palliative care nurse consultants and makes recommendations about future directions for the role development of this role. While the palliative care nurse consultant role is accepted in the acute setting there is little evidence or literature about what contributes to the success of this role. A three-phase study was undertaken to describe the role of palliative care nurse consultants in acute hospitals in Melbourne, Australia. The first phase of the three-phase study, involving in-depth qualitative interviews with the palliative care nurse consultants, is reported in this article. Using open-ended semi-structured questions, 10 palliative care nurse consultants were interviewed using open-ended questions about aspects of their role and the interviews were thematically analysed. Four main themes were identified that clarified the role; being the internal link; being the lynch pin; being responsive and being challenged. The palliative care nurse consultants were the first point of introduction to palliative care and thus they saw a significant role in introducing the concept of palliative care to those requiring palliative care, their families and others. They are an important link between the settings of care required by people accessing palliative care-acute, in-patient palliative care and community care. The palliative care nurse consultants saw themselves in leadership positions that in some ways defy boundaries, because of the inherent complexity and diversity of the role. The palliative care nurse consultants' role appears to be pivotal in providing expert advice to staff and people requiring palliative care, and connecting palliative care services both within the hospital and to external services. PMID:19112925

  13. 78 FR 53152 - Submission for OMB Review; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-28

    ... HUMAN SERVICES National Institutes of Health Submission for OMB Review; Comment Request: Palliative Care... requested in writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation, -0925-New... Information Collection: NINR developed Palliative Care: Conversations Matter, a pediatric palliative...

  14. Distress, Stress and Solidarity in Palliative Care.

    ERIC Educational Resources Information Center

    deMontigny, Johanne

    1993-01-01

    Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)

  15. Pediatric Palliative Care at a Glance

    MedlinePlus

    ... can care start? • Receive services, like art or music therapy • Find ways to relax and play Palliative ... Nurses • Child life specialists • Respite providers • Art and music therapists • Chaplains • Case managers • Counselors • Home health aides • ...

  16. Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya

    PubMed Central

    Ali, Zipporah

    2016-01-01

    Background In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015–2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. Method The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Results Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. Conclusion As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya’s successful experience.

  17. How much does care in palliative care wards cost in Poland?

    PubMed Central

    Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika

    2016-01-01

    Introduction The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. Material and methods The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. Results The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). Conclusions The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013. PMID:27186194

  18. Palliation and supportive care in radiation medicine.

    PubMed

    Janjan, Nora

    2006-02-01

    The treatment of bone metastases represents a paradigm for evaluating palliative care in terms of symptom relief, toxicities of therapy, and the financial burden to the patient, caregivers, and society. Despite enormous expenditures to treat metastases, patients continue to sustain symptoms of the disease, and uninterrupted aggressive therapies are pursued until death that incur toxicity in approximately 25% of patients. This approach is inconsistent with the goals of palliative care, which should efficiently provide comfort using antineoplastic therapies or supportive care approaches to the patient with the fewest treatment-related side effects, recognizing that the patient will die of the disease.The development of therapies such as bisphosphonates is important in advancing options for palliative care; however, clinical trials demonstrating the efficacy of bisphosphonates have not addressed important issues for clinical practice. The primary study endpoints should primarily address pertinent patient outcomes such as pain relief rather than asymptomatic radiographic findings. These studies should define clear indications of when to start and stop the therapy, the appropriate patient populations to receive the therapy, and the cost effectiveness of the treatment relative to other available therapies such as radiation. Cost-utility analyses, which account for a broader domain of cost effectiveness, need to be performed as part of clinical trials, especially for palliative care endpoints. Clinical trials that include these criteria are critical to future practice guideline development. As health care resources continue to become more limited, the criteria for care must be better defined to avoid administration of therapy with limited benefit. Leadership must come from the specialty as clinical trials and clinical practice increasingly interface with health care policy. Goals of therapy must remain clear for the benefit of the individual and all patients. PMID

  19. [Implementation of palliative care in Ivory Coast].

    PubMed

    Coulibaly, J Didi-Kouko; Datie, A-M; Binlin-Dadie, R; Kouame, I; N'guessan, Zc; Barouan, M-C; Koffi, E; Coulibaly, I; Mensah, J; Yenou, H Memain; Dedomey, E; Echimane, Ka; Plo, Kj; Kouassi, B

    2009-05-01

    Ivory Coast adhered to the strategy of the primary cares of health whose leading principles served basis to the definition of the National politics of sanitary development, exposed in the National plan of sanitary development 1996-2005. The improvement of the quality of the cares is the main objective of this plan. The attack of this objective cannot make itself without the hold in account of the palliative cares that are a component of the cares for the patients affected by chronic and incurable affections, since the diagnosis until the death and even after the death. Conscious of the necessity to develop the palliative cares to improve the quality of life of the patients and their families, the ministry in charge of health, in collaboration with the partners to the development, initiated a project of development of the palliative care in Ivory Coast. It is about an innovating gait in Ivory Coast concerning politics of health. This work has for goal to present the big lines and the setting in which this politics has been put in place. PMID:19423486

  20. Developing the Cambridge palliative audit schedule (CAMPAS): a palliative care audit for primary health care teams.

    PubMed Central

    Rogers, M S; Barclay, S I; Todd, C J

    1998-01-01

    BACKGROUND: Problems with the provision of palliative care have been reported. Audit is one means of improving care. Earlier audits of primary care palliative care have been initiated by general practitioners (GPs) and are predominantly retrospective record reviews. Widely applicable methods for the audit of primary care palliative care do not exist. AIM: To develop relevant palliative care standards and to devise an audit schedule (the Cambridge palliative audit schedule, CAMPAS) suitable for monitoring palliative care in diverse primary care settings. METHOD: Primary health care team (PHCT) members collaborated at all stages. Reasonable outcomes and acceptable interventions for PHCTs were identified and standards developed. Each standard was constructed to ensure uniform interpretation, and CAMPAS was structured to collect data necessary for determining whether the standards were met. RESULTS: Over 50% of PHCTs (n = 20) in the health district were recruited and trained to use CAMPAS. A total of 876 contacts with 29 patients was recorded by PHCTs using CAMPAS. Considerable inter- and intra-PHCT variation was found in the achievement of the standards. CONCLUSIONS: The favourable participation rate suggests commitment to audit and improvement in patient care. Overall, the standards were reported to be suitable. Although 100% achievement of some standards may be unrealistic, the level of attainment for many suggests that it is possible. CAMPAS has been reported to be a useful structure for recording assessments and monitoring care, as well as a usable audit schedule. As an audit tool, it identified areas in need of improvement and facilitated feed-back to participants. Future audit is required to determine whether improvements in care have been effected. PMID:9692279

  1. Family Day Care Associations.

    ERIC Educational Resources Information Center

    Bookman, Robert

    This paper presents information on the organization and accomplishments of Family Day Care Associations, organized groups of individuals who provide day care services in their own homes. Although primarily based on experiences of day care mothers in New York State, the paper presents information relevant to day care providers in any area.…

  2. Factors influencing palliative care. Qualitative study of family physicians' practices.

    PubMed Central

    Brown, J. B.; Sangster, M.; Swift, J.

    1998-01-01

    OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine. PMID:9612588

  3. The Role of Psychology in Pediatric Palliative Care.

    PubMed

    Edlynn, Emily; Kaur, Harpreet

    2016-07-01

    Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the United States indicate that team composition almost never included a psychologist. This article presents a model of collaborative care to optimize the integration of psychosocial and medical aspects of treatment in pediatric palliative care, delineating how a psychologist adds to this model. This article argues that psychology brings specialized skills in assessment, intervention, and research that fit with the premise of palliative care as a holistic approach that relieves symptoms. Systematic inclusion of psychologists on pediatric palliative care teams may help to improve effectiveness of services as well as extend the knowledge base of mental health in pediatric palliative care. PMID:27008276

  4. Managing lymphoedema in palliative care patients.

    PubMed

    Todd, Marie

    The development of lymphoedema in advanced disease is distressing for patients and their carers and can prove difficult to manage for health-care professionals involved in their care. This article will provide an overview of co-morbidities that cancer patients face that will have an impact on the development, progression or management of lymphoedema. The principles of assessing and managing lymphoedema in palliative care patients is presented, based on the Scottish governments action plan Living and Dying Well. The need for collaboration with other members of the multi-disciplinary team to provide the seamless, patient-centred service advocated in this action plan is also presented. PMID:19377392

  5. [Palliative care needs in advanced chronic illness].

    PubMed

    Tripodoro, Vilma A; Rynkiewicz, María C; Llanos, Victoria; Padova, Susana; De Lellis, Silvina; De Simone, Gustavo

    2016-01-01

    About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs. PMID:27295702

  6. Palliative care and quality of life in neuro-oncology

    PubMed Central

    Mummudi, Naveen

    2014-01-01

    Health-related quality of life has become an important end point in modern day clinical practice in patients with primary or secondary brain tumors. Patients have unique symptoms and problems from diagnosis till death, which require interventions that are multidisciplinary in nature. Here, we review and summarize the various key issues in palliative care, quality of life and end of life in patients with brain tumors, with the focus on primary gliomas. PMID:25165570

  7. Undergraduate medical education in palliative medicine: the first step in promoting palliative care in Lebanon.

    PubMed

    Naccache, Nicole; Abou Zeid, Hicham; Nasser Ayoub, Eliane; Antakly, Marie-Claire

    2008-01-01

    Effective delivery of high-quality palliative care requires effective interprofessional team working by skilled healthcare professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional team working in early professional undergraduate medical education. Integrating palliative medicine in undergraduate medical education curricula seems to be a must. In this review, we present as an example the Palliative and End-of-Life Care Curriculum (PEOLC) used in Canada for undergraduate medical education and underline the need for such a national curriculum in Lebanon. One must keep in mind that medical education does not stop at the end of the medical school, ongoing learning needs exist. Continuous medical education in palliative care should also be emphasized; the overall goal is promoting palliative medicine. Respecting and protecting human dignity is the right of every patient. PMID:19534074

  8. The Changing Role of Palliative Care in the ICU

    PubMed Central

    Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.

    2015-01-01

    Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and

  9. [Use of music in palliative care].

    PubMed

    Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana

    2011-12-01

    Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques

  10. Palliative care in COPD: an unmet area for quality improvement.

    PubMed

    Vermylen, Julia H; Szmuilowicz, Eytan; Kalhan, Ravi

    2015-01-01

    COPD is a leading cause of morbidity and mortality worldwide. Patients suffer from refractory breathlessness, unrecognized anxiety and depression, and decreased quality of life. Palliative care improves symptom management, patient reported health-related quality of life, cost savings, and mortality though the majority of patients with COPD die without access to palliative care. There are many barriers to providing palliative care to patients with COPD including the difficulty in prognosticating a patient's course causing referrals to occur late in a patient's disease. Additionally, physicians avoid conversations about advance care planning due to unique communication barriers present with patients with COPD. Lastly, many health systems are not set up to provide trained palliative care physicians to patients with chronic disease including COPD. This review analyzes the above challenges, the available data regarding palliative care applied to the COPD population, and proposes an alternative approach to address the unmet needs of patients with COPD with proactive primary palliative care. PMID:26345486

  11. Palliative care - fear and anxiety

    MedlinePlus

    ... heartbeat Shaking Muscle twitches Sweating Trouble sleeping Bad dreams or nightmares Extreme restlessness (called agitation) How to ... is accredited by URAC, also known as the American Accreditation HealthCare Commission (www.urac.org). URAC's accreditation ...

  12. More than trivial: strategies for using humor in palliative care.

    PubMed

    Dean, Ruth Anne Kinsman; Gregory, David M

    2005-01-01

    Humor and laughter are ubiquitous in human interactions. Terminal illness, however, is often accompanied by circumstances of anxiety, fear, and sadness. Hospice/palliative care emphasizes quality of life and the importance of human relationships. In this context, humor finds its place in authentic person-to-person connectedness. This article presents findings from a clinical ethnography that investigated the phenomena of humor and laughter in an inpatient palliative care unit. As a participant observer, the lead author accompanied 6 nurses throughout their day-to-day activities, twice weekly over 12 weeks. In addition to more than 200 hours of fieldwork, informal conversations were held with patients and families and semistructured interviews were conducted with nurses (n = 11), physicians (n = 2), a social worker (n = 1), and a physiotherapist (n = 1). Humor was pervasive, varied in the setting, and occurred across a range of intensities. Both clients and team members used humor to build relationships, contend with circumstances, and express sensibilities. Humor was affected by differences in people, differing circumstances, ethnicity, gender, and degree of stress. Participants relied on intuition as well as a constellation of other factors in discerning whether or not to use humor. Techniques for assessment included identification of cues such as expression in the eyes and timing as indications of receptivity. Combined with caring and sensitivity, humor is a powerful therapeutic asset in hospice/palliative care. It must neither be taken for granted nor considered trivial. PMID:16046892

  13. Palliative care in India: Situation assessment and future scope.

    PubMed

    Kar, S S; Subitha, L; Iswarya, S

    2015-01-01

    Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification, assessment and treatment of pain, and other problems - physical, psychosocial, and spiritual. It is estimated that in India the total number of people who need palliative care is likely to be 5.4 million people a year. Though palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death index in overall score. However there has been steady progress in the past few years through community-owned palliative care services. One of the key objectives of the National Programme for prevention and control of cancer, diabetes, cardiovascular diseases, and stroke is to establish and develop capacity for palliative and rehabilitative care. Community models for the provision of home-based palliative care is possible by involving community caregivers and volunteers supervised by nurses trained in palliative care. Training of medical officers and health care professionals, and sensitization of the public through awareness campaigns are vital to improve the scope and coverage of palliative care. Process of translating palliative care plan into action requires strong leadership, competent management, political support and integration across all levels of care. PMID:26837989

  14. [Providing regular relief; considerations for palliative care in the Netherlands].

    PubMed

    Crul, B J; van Weel, C

    2001-10-20

    Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres. PMID:11695096

  15. Palliative care and neurology: time for a paradigm shift.

    PubMed

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

    2014-08-01

    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

  16. Palliative Care in the Emergency Department

    PubMed Central

    Mierendorf, Susanne M; Gidvani, Vinita

    2014-01-01

    The Emergency Department (ED) is the place where people most frequently seek urgent care. For patients living with chronic disease or malignancy who may be in a crisis, this visit may be pivotal in determining the patients’ trajectory. There is a large movement in education of emergency medicine physicians, hospitalists, and intensivists from acute aggressive interventions to patient-goal assessment, recognizing last stages of life and prioritizing symptom management. Although the ED is not considered an ideal place to begin palliative care, hospital-based physicians may assist in eliciting the patient’s goals of care and discussing prognosis and disease trajectory. This may help shift to noncurative treatment. This article will summarize the following: identification of patients who may need palliation, discussing prognosis, eliciting goals of care and directives, symptom management in the ED, and making plans for further care. These efforts have been shown to improve outcomes and to decrease length of stay and cost. The focus of this article is relieving “patient” symptoms and family distress, honoring the patient’s goals of care, and assisting in transition to a noncurative approach and placement where this may be accomplished. PMID:24694318

  17. Palliative care of First Nations people

    PubMed Central

    Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris

    2009-01-01

    ABSTRACT OBJECTIVE To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members. DESIGN Phenomenologic approach using qualitative in-depth interviews. SETTING A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients. PARTICIPANTS Ten recently bereaved aboriginal family members. METHODS Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness. MAIN FINDINGS First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences. CONCLUSION Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care. PMID:19366951

  18. 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

  19. Palliative care for patients with non-malignant respiratory disease.

    PubMed

    McVeigh, Clare

    2015-05-01

    Non-malignant respiratory disease is a chronic life-limiting condition that requires holistic palliative care. Patients with non-malignant respiratory disease have a range of biopsychosocial and spiritual needs, which healthcare professionals should recognise and manage effectively. Healthcare professionals have an important role in enabling the delivery of effective palliative care to this group of patients and their carers, and in recognising the many factors that may impede delivery of palliative care. PMID:25942985

  20. [Personal and dignified death. The role of pastoral care in palliative medicine].

    PubMed

    Breit-Keßler, Susanne

    2016-03-01

    Palliative pastoral care is not about "adding days to life, but about "adding life to days". It does not matter whether the dying process is short or long. What matters is to ensure the best possible quality of life until the very end through mindful companionship. Palliative pastoral care is a path towards a personal dying, dying where the person is taken seriously as an individual until the last moment. Palliative care includes medical assistance, careful care, psychosocial support, and counselling that addresses the spiritual needs of the dying. This palliative care includes inpatient and outpatient hospice work and accompanies not only the patients but also their relatives. It must become the standard procedure in end of life care. The palliative pastoral care also take the needs of medical staff into account: Time-consuming care for the dying exceeds the staff's time budget. A sudden death can be perceived as traumatic. In this case palliative pastoral care must perform the tasks of crisis management, crisis intervention and de-escalation. The debriefing of involved staff can prevent the development of burn-out syndrome. In the view of holistic healthcare, health insurance funds should co-finance pastoral care. Society and humanity benefit from addressing the needs of the dying. In an economically dominated environment it is a social responsibility to make dying humane. PMID:26983110

  1. The impact of volunteering in hospice palliative care.

    PubMed

    Claxton-Oldfield, Stephen; Claxton-Oldfield, Jane

    2007-01-01

    The goal of this study was to examine the impact of hospice palliative care work on volunteers' lives. In-depth interviews were conducted with 23 direct-patient care volunteers. More than half of the volunteers became involved in hospice palliative care because of their own experiences with family members and/or friends who have died. Most of the volunteers reported that they were different now or had changed in some way since they have been volunteering (e.g., they had grown in some way, have learned how to keep things in perspective). In addition, most of the volunteers felt that their outlook on life had changed since they started volunteering (e.g., they were more accepting of death, and they learned the importance of living one day at a time). Volunteers reported doing a number of different things to prevent compassion fatigue or burnout (e.g., reading a book, listening to music, talking to others, and taking time off from volunteering). Most of the volunteers said that they would tell anyone who might be thinking of volunteering in hospice palliative care that it is a very rewarding activity and/or that they should try it. Finally, many of the volunteers offered suggestions for doing things differently in their programs. PMID:17895491

  2. Ethical issues in palliative care.

    PubMed

    Randall, F M

    1999-10-01

    The relief of suffering is one of the aims of health care. Pain relief is a moral obligation in health care, not an optional extra. Doctors have moral obligations to strive to relieve pain, to be competent in basic pain control, and to endeavour to give patients an adequate understanding of their illness and painkillers. The most common moral problem in pain control in terminally ill patients is the conflict between the obligation to relieve suffering and the obligation to prolong life. The law prohibits intentionally causing the death of another person. Debates follow as to what constitutes an intention to cause death, and what actually constitutes a cause of death. At present, doctors are legally permitted to give sedatives and analgesics to terminally ill patients with the intention of relieving suffering, even if life is shortened. The moral principle of the 'double effect' relates to this and is explained. It relies on a distinction between intended and foreseen effects of treatment. Some people dispute the distinction between intended and foreseen effects and claim that the principle of double effect allows doctors who intend euthanasia to carry it out under cover of the law. This debate is explored in the article. Finally, is it ever morally justifiable to end the patient's life on the grounds that this is the only way to end pain? Even if it is, should euthanasia be legalised? A brief comment on these issues, and the roles of law and morality, are made. PMID:10522743

  3. Pediatric End-of-Life Issues and Palliative Care

    PubMed Central

    Michelson, Kelly Nicole; Steinhorn, David M.

    2007-01-01

    Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information. PMID:18438449

  4. Psychologic issues in palliative care.

    PubMed

    Gibson, Christopher A; Lichtenthal, Wendy; Berg, Amy; Breitbart, William

    2006-03-01

    As medical science progresses and the life spans of patients with serious illnesses increase, the process that leads to death is becoming more feared than death itself. This fear is particularly intense in technologically advanced cultures with access to advanced medical care. The lives of patients who previously would have died rapidly are now often extended. As a result, images of suffering, such as dying in isolation and experiencing great pain, often are at the forefront of concerns about those struggling with terminal illnesses. This article provides medical practitioners with an overview of the issues and symptoms common in terminal illness, to help them work most effectively with their mental health colleagues. PMID:16487896

  5. Anger in palliative care: a clinical approach.

    PubMed

    Philip, J; Gold, M; Schwarz, M; Komesaroff, P

    2007-01-01

    Anger in patients and families is a common problem in the care of persons with advanced disease. Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it frequently creates difficulties for the doctors involved in care. In particular, there is often a personal impact on the doctor at whom anger is directed. This paper examines results of qualitative research with palliative care workers in the context of the broader published literature and the authors' clinical experiences. The ability to interact effectively with angry patients is a skill that is often learned with experience and is extremely useful in both transforming the patients' reaction into a more creative emotion and in developing a therapeutic relationship. Despite conscientious efforts, however, a few patients continue to be angry. A practical approach to anger, useful for the clinician directly involved in care, is outlined along with some strategies to adopt in the face of persistent anger. PMID:17199844

  6. Palliative Care Eases Symptoms, Enhances Lives | NIH MedlinePlus the Magazine

    MedlinePlus

    ... of this page please turn JavaScript on. Feature: Palliative Care Palliative Care Eases Symptoms, Enhances Lives Past Issues / Spring 2014 ... pharmacists, nutritionists, and others. When do I need palliative care? Many adults and children living with serious diseases ...

  7. How to Get It -- Step 2: Meet the Palliative Care Team

    MedlinePlus

    ... the Quiz Step 3: Meet the Palliative Care Team The palliative care team will spend a lot ... learn more about palliative care? Clinician Corner: The Importance of the Family Meeting Access the Provider Directory ...

  8. Palliative Care in the Emergency Department.

    PubMed

    McEwan, Alyssia; Silverberg, Joshua Z

    2016-08-01

    As the geriatric population increases in the United States, there is an increase in number of visits to emergency departments for end-of-life and palliative care. This provides the emergency physician with a unique opportunity to alleviate and prevent further suffering in this vulnerable population. Competency in communication strategies that support shared decision making and familiarity with medicolegal terminology increase physician confidence about addressing complaints at the end of life. Familiarity with evidence-based recommendations for symptom management of pain at the end of life aids the emergency physician in creating a positive experience for the patient and their loved ones. PMID:27475020

  9. Using cannabinoids in pain and palliative care.

    PubMed

    Peat, Sue

    2010-10-01

    Interest in the use of cannabinoids in a clinical setting is gradually increasing, particularly in patients where more conventional treatments have failed. They have been reported as offering perceived benefits in a wide range of conditions, but the major interest at present is centred on their place in pain management and in the palliation of symptoms secondary to terminal cancer and neurological disease. The potential benefits include symptomatic relief for patients suffering from intractable neuropathic pain, anorexia, anxiety and muscle spasm. There is clear consensus that cannibinoids should not be used as a first-line monotherapy, but should be considered as valuable adjuvants to more commonly indicated therapeutic options in the management of palliative care patients. Scientific evidence documenting the benefits of the canibinoids nabilone and sativex is accumulating, but needs to be evaluated carefully in the light of the paucity of available data. Both drugs are usually used under the guidance of specialist units. Nabilone and Sativex are now controlled drugs, and are frequently used outside of their licensed indication (control of chemotherapy-induced nausea and vomiting) and hence particular care needs to be taken in evaluating the rational for their use. Sativex has been recently licenced for use in the management of patients with multiple sclerosis. PMID:20972379

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

    MedlinePlus

    ... this page please turn JavaScript on. Feature: Palliative Care Palliative Care: Increasing the quality of life for patients and ... Past Issues / Spring 2014 Table of Contents Palliative Care: Conversations Matter™ for Sick Children "Palliative Care: Conversations ...

  11. Transforming children's palliative care-from ideas to action: highlights from the first ICPCN conference on children's palliative care.

    PubMed

    Downing, J; Marston, J; Muckaden, Ma; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P

    2014-01-01

    The International Children's Palliative Care Network (ICPCN) held its first international conference on children's palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10-12 February 2014. The theme of the conference, Transforming children's palliative care-from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children's palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children's palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children's palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children's palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children's palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children's palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children's palliative care. PMID:24761156

  12. [Recommendations for the palliative care of dying neonates].

    PubMed

    Cignacco, E; Stoffel, L; Raio, L; Schneider, H; Nelle, M

    2004-08-01

    Neonates and infants have the highest mortality rate in the pediatric patient population, but there is a paucity of data about their palliative care. Most neonate deaths occur during the first week of life so it is mostly the staff of NICUS's and obstetrical wards who are confronted with the palliative care of dying neonates. Clinical experience shows that many aspects of care in palliative situations are not well known to the health care providers. This is especially true for pain assessment and pain treatment during the dying process. A search of the literature on this subject resulted in only a few publications; hence, this article basically describes clinical experience in the palliative care of neonates. In this article some recommendations for decision-making and standardization of palliative care for dying neonates are presented. PMID:15326558

  13. Chronic pain in the outpatient palliative care clinic.

    PubMed

    Merlin, Jessica S; Childers, Julie; Arnold, Robert M

    2013-03-01

    Chronic pain is common. Many patients with cancer and other life-limiting illnesses have chronic pain that is related to their disease, and some have comorbid chronic nonmalignant chronic pain. As palliative care continues to move upstream and outpatient palliative care programs develop, palliative care clinicians will be called upon to treat chronic pain. Chronic pain differs from acute pain in the setting of advanced disease and a short prognosis in terms of its etiology, comorbidities-especially psychiatric illness and substance abuse-and management. To successfully care for these patients, palliative care providers will need to learn new clinical competencies. This article will review chronic pain management core competencies for palliative care providers. PMID:22556285

  14. Building a transdisciplinary approach to palliative care in an acute care setting.

    PubMed

    Daly, Donnelle; Matzel, Stephen Chavez

    2013-01-01

    A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness. PMID:23977778

  15. Enhancing Palliative Care Education in Medical School Curricula: Implementation of the Palliative Education Assessment Tool.

    ERIC Educational Resources Information Center

    Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.

    2002-01-01

    Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…

  16. Are Undergraduate Nurses Taught Palliative Care during Their Training?

    ERIC Educational Resources Information Center

    Lloyd-Williams, Mari; Field, David

    2002-01-01

    Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…

  17. Are family medicine residents adequately trained to deliver palliative care?

    PubMed Central

    Mahtani, Ramona; Kurahashi, Allison M.; Buchman, Sandy; Webster, Fiona; Husain, Amna; Goldman, Russell

    2015-01-01

    Objective To explore educational factors that influence family medicine residents’ (FMRs’) intentions to offer palliative care and palliative care home visits to patients. Design Qualitative descriptive study. Setting A Canadian, urban, specialized palliative care centre. Participants First-year (n = 9) and second-year (n = 6) FMRs. Methods Semistructured interviews were conducted with FMRs following a 4-week palliative care rotation. Questions focused on participant experiences during the rotation and perceptions about their roles as family physicians in the delivery of palliative care and home visits. Participant responses were analyzed to summarize and interpret patterns related to their educational experience during their rotation. Main findings Four interrelated themes were identified that described this experience: foundational skill development owing to training in a specialized setting; additional need for education and support; unaddressed gaps in pragmatic skills; and uncertainty about family physicians’ role in palliative care. Conclusion Residents described experiences that both supported and inadvertently discouraged them from considering future engagement in palliative care. Reassuringly, residents were also able to underscore opportunities for improvement in palliative care education. PMID:27035008

  18. Pediatric palliative care online: the views of health care professionals.

    PubMed

    Ens, Carla D L; Chochinov, Harvey M; Bérard, Josette L M; Harlos, Mike S; Stenekes, Simone J; Wowchuk, Suzanne M

    2008-01-01

    The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations. PMID:18459596

  19. Opportunities to maximize value with integrated palliative care

    PubMed Central

    Bergman, Jonathan; Laviana, Aaron A

    2016-01-01

    Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a patient needs to make: they need not decide if they want either aggressive chemotherapy from their oncologist or symptom-guided palliative care but rather they can be comanaged by several clinicians, including a palliative care clinician, to maximize the benefit to them. One common misconception about palliative care, and supportive care in general, is that it amounts to “doing nothing” or “giving up” on aggressive treatments for patients. Rather, palliative care involves very aggressive care, targeted at patient symptoms, quality-of-life, psychosocial needs, family needs, and others. Integrating palliative care into the care plan for individuals with advanced diseases does not necessarily imply that a patient must forego other treatment options, including those aimed at a cure, prolonging of life, or palliation. Implementing interventions to understand patient preferences and to ensure those preferences are addressed, including preferences related to palliative and supportive care, is vital in improving the patient-centeredness and value of surgical care. Given our aging population and the disproportionate cost of end-of-life care, this holds great hope in bending the cost curve of health care spending, ensuring patient-centeredness, and improving quality and value of care. Level 1 evidence supports this model, and it has been achieved in several settings; the next necessary step is to disseminate such models more broadly. PMID:27226721

  20. Pediatric palliative care in the community.

    PubMed

    Kaye, Erica C; Rubenstein, Jared; Levine, Deena; Baker, Justin N; Dabbs, Devon; Friebert, Sarah E

    2015-01-01

    Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed. PMID:25955682

  1. Japanese Bereaved Family Members' Perspectives of Palliative Care Units and Palliative Care: J-HOPE Study Results.

    PubMed

    Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo

    2016-06-01

    The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care. PMID:25852202

  2. Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project.

    PubMed

    Hynes, Geralyn; Kavanagh, Fiona; Hogan, Christine; Ryan, Kitty; Rogers, Linda; Brosnan, Jenny; Coghlan, David

    2015-09-01

    Palliative care seeks to improve the quality of life for patients suffering from the impact of life-limiting illnesses. Palliative care encompasses but is more than end-of-life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non-specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non-specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end-of-life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. PMID:25514830

  3. Edmonton, Canada: a regional model of palliative care development.

    PubMed

    Fainsinger, Robin L; Brenneis, Carleen; Fassbender, Konrad

    2007-05-01

    Palliative care developed unevenly in Edmonton in the 1980s and early 1990s. Health care budget cuts created an opportunity for innovative redesign of palliative care service delivery. This report describes the components that were developed to build an integrated comprehensive palliative care program, the use of common clinical assessments and outcome evaluation that has been key to establishing credibility and ongoing support. Our program has continued to develop and grow with an ongoing focus on the core areas of clinical care, education, and research. PMID:17482060

  4. Family Day Care Handbook.

    ERIC Educational Resources Information Center

    Community Coordinated Child Care (4-C) in Dane County, Inc., Madison, WI.

    This handbook provides both general and specific information on child development and child care to help adults who are providing child care in their homes. Information is presented in six sections which describe: (1) the family day care system, the occupation of caregiver, and the development of relationships; (2) development of a health program,…

  5. Palliative Radiotherapy with or without Additional Care by a Multidisciplinary Palliative Care Team: A Retrospective Comparison

    PubMed Central

    Dalhaug, Astrid; Pawinski, Adam; Aandahl, Gro; Haukland, Ellinor; Engljähringer, Kirsten

    2014-01-01

    Purpose. To analyze pattern of care and survival after palliative radiotherapy (RT) in patients managed exclusively by regular oncology staff or a multidisciplinary palliative care team (MPCT) in addition. Methods. Retrospective analysis of 522 RT courses. Comparison of Two Groups: MPCT versus none. Results. We analyzed 140 RT courses (27%) with MPCT care and 382 without it. The following statistically significant differences were observed: 33% of female patients had MPCT care versus only 23% of male patients and 37% of patients <65 years had MPCT care versus only 22% of older patients. MPCT patients were more likely to have poor performance status and liver metastases. In the MPCT group steroid and opioid use was significantly more common. Dose-fractionation regimens were similar. Median survival was significantly shorter in the MPCT group, 3.9 versus 6.9 months. In multivariate analysis, MPCT care was not associated with survival. Adjusted for confounders, MPCT care reduced the likelihood of incomplete RT by 33%, P > 0.05. Conclusions. Patterns of referral and care differed, for example, regarding age and medication use. It seems possible that MPCT care reduces likelihood of incomplete RT. Therefore, the impact of MPCT care on symptom control should be investigated and objective referral criteria should be developed. PMID:25006507

  6. Critical palliative care: intensive care redefined.

    PubMed

    Civetta, J M

    2001-01-01

    In the area of end-of-life bioethical issues, patients, families, and health care providers do not understand basic principles, often leading to anguish, guilt, and anger. Providers lack communication skills, concepts, and practical bedside information. Linking societal values of the sanctity of life and quality of life with medical goals of preservation of life and alleviation of suffering respectively provides an essential structure. Medical care focuses on cure when possible but when the patient is dying, the focus switches to caring for patients and their families. Clinicians need to learn how to balance the benefits and burdens of medications and treatments, control symptoms, and orchestrate withdrawal of treatment. Finally, all need to learn more about the dying process to benefit society, their own families, and themselves. PMID:11406456

  7. Developing a service model that integrates palliative care throughout cancer care: the time is now.

    PubMed

    Partridge, Ann H; Seah, Davinia S E; King, Tari; Leighl, Natasha B; Hauke, Ralph; Wollins, Dana S; Von Roenn, Jamie Hayden

    2014-10-10

    Palliative care is a fundamental component of cancer care. As part of the 2011 to 2012 Leadership Development Program (LDP) of the American Society of Clinical Oncology (ASCO), a group of participants was charged with advising ASCO on how to develop a service model integrating palliative care throughout the continuum of cancer care. This article presents the findings of the LDP group. The group focused on the process of palliative care delivery in the oncology setting. We identified key elements for models of palliative care in various settings to be potentially equitable, sustainable, feasible, and acceptable, and here we describe a dynamic model for the integrated, simultaneous implementation of palliative care into oncology practice. We also discuss critical considerations to better integrate palliative care into oncology, including raising consciousness and educating both providers and the public about the importance of palliative care; coordinating palliative care efforts through strengthening affiliations and/or developing new partnerships; prospectively evaluating the impact of palliative care on patient and provider satisfaction, quality improvement, and cost savings; and ensuring sustainability through adequate reimbursement and incentives, including linkage of performance data to quality indicators, and coordination with training efforts and maintenance of certification requirements for providers. In light of these findings, we believe the confluence of increasing importance of incorporation of palliative care education in oncology education, emphasis on value-based care, growing use of technology, and potential cost savings makes developing and incorporating palliative care into current service models a meaningful goal. PMID:25199756

  8. Heart Failure and Palliative Care: Implications in Practice

    PubMed Central

    Penrod, Janice; Fogg, Janet

    2009-01-01

    Abstract The number of people with heart failure is continually rising. Despite continued medical advances that may prolong life, there is no cure. While typical heart failure trajectories include the risk of sudden death, heart failure is typically characterized by periods of stability interrupted by acute exacerbations. The unpredictable nature of this disease and the inability to predict its terminal phase has resulted in few services beyond medical management being offered. Yet, this population has documented unmet needs that extend beyond routine medical care. Palliative care has been proposed as a strategy to meet these needs, however, these services are rarely offered. Although palliative care should be implemented early in the disease process, in practice it is tied to end-of-life care. The purpose of this study was to uncover whether the conceptualization of palliative care for heart failure as end-of-life care may inhibit the provision of these services. The meaning of palliative care in heart failure was explored from three perspectives: scientific literature, health care providers, and spousal caregivers of patients with heart failure. There is confusion in the literature and by the health care community about the meaning of the term palliative care and what the provision of these services entails. Palliative care was equated to end-of-life care, and as a result, health care providers may be reluctant to discuss palliative care with heart failure patients early in the disease trajectory. Most family caregivers have not heard of the term and all would be receptive to an offer of palliative care at some point during the disease trajectory. PMID:19508139

  9. A palliative approach to neurological care: a literature review.

    PubMed

    Gofton, Teneille E; Jog, Mandar S; Schulz, Valerie

    2009-05-01

    This review assesses the current opinion towards early palliative care in neurology and discusses the existing evidence base. A comprehensive literature search resulted in 714 publications with 53 being directly relevant to the scope of this review. The current literature reflects primarily expert opinion and describes a growing interest in the early introduction of palliative principles into neurological care. Early initiation of palliative interventions has the potential to improve quality of life, enhance symptom management and assist in advance care planning. Further data is required to determine whether this shift in philosophy has a positive impact on patient care. PMID:19534328

  10. An interdisciplinary and collaborative initiative in palliative care research

    PubMed Central

    Desa, Veena; Danjoux, Cyril; Matyas, Yvette; Fitch, Margaret; Husain, Amna; Horvath, Nina; Myers, Jeff; Clemons, Mark; Hux, Janet E; Barnes, Elizabeth A

    2009-01-01

    The scale and complexity of palliative care increasingly demands that researchers move beyond their own discipline and explore interdisciplinary collaboration. At a Palliative Care Research Retreat held in January 2006 at the Toronto Sunnybrook Regional Cancer Centre, researchers from multiple care settings with the center and from other Toronto hospitals came together with the vision of becoming Canadian leaders in palliative care research. As a result of this retreat, five interdisciplinary groups were formed to pursue research in the areas of pain and symptom management, access to services, translational research, education, and communication. An overview of the retreat and direction of research for each group is provided. PMID:21197289

  11. Children’s palliative care now! Highlights from the second ICPCN conference on children’s palliative care, 18–21 May 2016, Buenos Aires, Argentina

    PubMed Central

    Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

    2016-01-01

    The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

  12. Children's palliative care now! Highlights from the second ICPCN conference on children's palliative care, 18-21 May 2016, Buenos Aires, Argentina.

    PubMed

    Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

    2016-01-01

    The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children's palliative care, genetics, perinatal and neonatal palliative care, the impact of children's palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children's palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The 'Big Debate' explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children's palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

  13. Vietnam: integrating palliative care into HIV/AIDS and cancer care.

    PubMed

    Krakauer, Eric L; Ngoc, Nguyen Thi Minh; Green, Kimberly; Van Kham, Le; Khue, Luong Ngoc

    2007-05-01

    Vietnam is struggling to meet the growing need for both disease-modifying and palliative care for people with life-threatening chronic diseases such as HIV/AIDS and cancer. Recently, Vietnam initiated rapid development of a national palliative care program for HIV/AIDS and cancer patients that builds on existing palliative care programs and experience and integrates palliative care into standard HIV/AIDS and cancer care. National palliative care guidelines have been issued by the Ministry of Health based on a rapid situation analysis. Plans now call for review and revision of opioid laws and regulations to increase availability of opioids for medical use, training in palliative care for clinicians throughout the country, and development of palliative care programs both in the community and in inpatient referral centers. PMID:17482051

  14. Palliative and supportive care for glioma patients.

    PubMed

    Walbert, Tobias; Chasteen, Kristen

    2015-01-01

    The diagnosis of a brain tumor is a life-changing event for patients and families. High-grade gliomas are incurable and long-term survival remains limited. While low-grade glioma patients have better outcomes, their quality of life is often affected by a variety of symptoms as well. Helping glioma patients improve quality of life at all stages of illness is an important goal for the interdisciplinary care team. There is evidence from advanced lung cancer patients that early involvement of a palliative care team can improve patient's quality of life, symptom burden, and even survival and a similar approach benefits glioma patients as well. Patients with high-grade and low-grade glioma often suffer from significant symptom burden. We discuss how validated global symptom assessments and symptom-specific screening tools are useful to identify distressing symptoms. Seizures, fatigue, depression, and anxiety are some of the more common symptoms throughout the disease course and should be managed actively. Patients with glioma also have high symptom burden at the end of life and the majority lose decision-making capacity. Advance care planning conversations early in the disease course are essential to elicit the patient's wishes for end of life care and effective communication with surrogate decision makers during all stages of the disease helps ensure that those wishes are respected. PMID:25468232

  15. [Palliative Care for Non-cancer Patients].

    PubMed

    Ikegaki, Junichi

    2016-03-01

    Although palliative care has been developed and implemented as care for cancer pain, it is holistic care for suffering that includes physical, psychosocial and spiritual pain of life-threatening illness. It turned out that non-cancer patients in the end-stage are also suffering from various pain that should be treated as cancer patients. Trajectories of illness in non-cancer patients are with more gradual decline than those of cancer patients with steady progression and it is often difficult to make decision about end-of-life. The purpose of advance care planning was originally to help describe legal documents. This process is proved to contribute to improving QOL of patients and their families to discuss preference, hope, economic problems, spiritual question as well as medical treatment In Japan guideline of decision making process in end-of-life stage has been established. A program of communication training in end-of-life discussion has been made. Under current situation some comments on the role of anesthesiologists are also mentioned. PMID:27097506

  16. 'Living choice': the commitment to tissue donation in palliative care.

    PubMed

    Wells, Joanne; Sque, Magi

    2002-01-01

    Professionals working in palliative care pride themselves on respecting patients' views and wishes. Palliative care patients are often aware that they are going to die and so the issue of what is going to happen to them after death becomes more relevant. That they should be involved in decisions about tissue donation seems obvious, yet many palliative care units do not routinely discuss donation with patients and their families. A grounded theory approach was used to develop an explanation of the low commitment to tissue donation by palliative care units. Six registered nurses and two doctors from each of two separate palliative care units participated in semi-structured, audiotaped interviews. Several themes emerged from the interviews to form a theory of why there is a low commitment to tissue donation in palliative care units. We have called the theory 'living choice'. The dominant theme of category was 'patient choice' and this pervaded and influenced 'professional role', 'donation process', 'concerns' and 'knowledge'. All these categories were contained and continuously interacted in the palliative care environment. PMID:11823746

  17. A Measure of Palliative Care in Nursing Homes

    PubMed Central

    Thompson, Sarah; Bott, Marjorie; Boyle, Diane; Gajewski, Byron; Tilden, Virginia P.

    2010-01-01

    Context Efforts to improve care for nursing home residents stand to be enhanced by measures to assess the degree to which staff provide palliative care. As the incidence of death in nursing homes increases with the aging population, the gap in measurement must be addressed. To that end, we report the development and psychometric testing of a nursing home palliative care survey. Objectives The purpose of this study was to evaluate the psychometric properties of the Palliative Care Survey for use in nursing homes. Methods Psychometric evaluation of the instrument was completed in two phases. Phase 1 focused on individual item analyses and subsequent revision or deletion of items, and Phase 2 evaluated evidence for reliability and validity. Phase 1 included 26 nursing homes and staff (n = 717) and Phase 2 included 85 nursing homes and staff (n = 2779). Data were analyzed using item-total correlations, Cronbach’s alpha, confirmatory factor analysis, and analysis of variance (ANOVA). Results Support was obtained for a 51-item Palliative Care Survey (PCS) made up of two constructs Palliative Care Practice and Palliative Care Knowledge. Conclusion The PCS measures the extent to which nursing home staff engage in palliative care practices and have knowledge consistent with good end-of-life care. Both practice and knowledge are an essential foundation to providing good end-of-life care to nursing home residents. Efforts to improve care for the dying in nursing homes have been slowed by an absence of measurement tools that capture care processes; a gap, which the Palliative Care Survey reported here, helps fill. PMID:20797836

  18. Cross cultural research in palliative care.

    PubMed

    Field, Annette; Maher, Paul; Webb, David

    2002-01-01

    Hospices within Australia, such as the Sacred Heart Hospice (SHH) at Darlinghurst, have over many years proven to be highly successful in meeting the needs of persons who require palliative care and addressing the concerns raised by their families. However, health professionals have increasingly recognised that caring for persons who are from a Non-English Speaking Background (NESB) and for their families requires giving them special consideration because of their different cultural needs. This project involved reviewing all inpatient files of the SHH over a three year period (1 October 1994 to 30 September 1997) and quantitatively reviewing all inpatient files of NESB inpatients during this period. Following this review, the researchers coordinated a focus group that comprised various health professionals from SHH and other health and community services and representatives of four non-English speaking countries--Greece, Italy, the former USSR, and China. These countries had the highest representation of inpatients during the three-year term covered by the research project. The project identified a number of specific strategies aimed at providing a more culturally sensitive health care service to NESB inpatients. PMID:12365757

  19. Integration of Palliative Care in the Context of Rapid Response

    PubMed Central

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

    2015-01-01

    Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

  20. When patients are stressed, in pain, suggest palliative care.

    PubMed

    2016-06-01

    Case managers are in a good position to recognize patients who have serious medical problems that are causing them and their family members stress, and refer them for a palliative care consultation, experts say. The palliative care team coordinates with the team providing medical care and helps control pain and other physical symptoms, relieves depression and anxiety, and provides support and spiritual help for the patient and family. The core palliative care team typically includes a medical specialist, a nurse who also acts as a case manager, a social worker, and a spiritual counselor. Palliative care improves outcomes and patient satisfaction when patients have a consultation early in the stay or even in the emergency department. PMID:27323510

  1. Utility and Potential of Bedside Ultrasound in Palliative Care

    PubMed Central

    Dhamija, Ekta; Thulkar, Sanjay; Bhatnagar, Sushma

    2015-01-01

    Bedside ultrasound is an important tool in modern palliative care practice. It can be utilized for rapid diagnostic evaluation or as an image guidance to perform invasive therapeutic procedures. With advent of portable ultrasound machines, it can also be used in community or home care settings, apart from palliative care wards. Major applications of bedside ultrasound include drainage of malignant pleural effusions and ascites, nerve blocks, venous access, evaluation of urinary obstruction, deep vein thrombosis and abscesses. Bedside ultrasound leads to better clinical decision-making as well as more accurate and faster invasive therapeutic procedures. It also enhances patient comfort and reduces cost burden. However, use of bedside ultrasound is still not widespread among palliative care givers, owing to initial cost, lack of basic training in ultrasound and apprehensions about its use. A team approach involving radiologists is important to develop integration of bedside ultrasound in palliative care. PMID:26009664

  2. Perspectives on Infant Day Care.

    ERIC Educational Resources Information Center

    Elardo, Richard, Ed.; Pagan, Betty, Ed.

    This second edition contains articles on (1) infant day care, (2) day care as a way to extend parental support systems, (3) meeting developmental needs of infants, (4) ecology of day care, (5) ecology of infant day care, (6) quality care for infants, (7) the daily schedule, (8) precautions in establishing infant day care, (9) teaching--learning…

  3. [Euthanasia and palliative care in the Netherlands].

    PubMed

    Boisseau, Nicolas

    2004-03-27

    THE BIRTH OF THE DUTCH LAW: Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this Article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy. THE INTERVENING FACTORS: Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied. The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples' homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the Authorities, and will most probably enable the gaps to be bridged. PMID:15105777

  4. [eLearning service for home palliative care].

    PubMed

    Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu

    2008-12-01

    In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids. PMID:20443298

  5. Children's palliative care in low- and middle-income countries.

    PubMed

    Downing, Julia; Powell, Richard A; Marston, Joan; Huwa, Cornelius; Chandra, Lynna; Garchakova, Anna; Harding, Richard

    2016-01-01

    One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs--highlighting examples of best practice among service models in Malawi, Indonesia and Belarus--before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need. PMID:26369576

  6. Smarter palliative care for cancer: Use of smartphone applications

    PubMed Central

    Jamwal, Nisha Rani; Kumar, Senthil P

    2016-01-01

    Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps) in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers’ necessities and patients’ biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care. PMID:26962291

  7. Smarter palliative care for cancer: Use of smartphone applications.

    PubMed

    Jamwal, Nisha Rani; Kumar, Senthil P

    2016-01-01

    Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps) in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care. PMID:26962291

  8. Early Palliative Care Improves Patients' Quality of Life

    MedlinePlus

    ... fullstory_160885.html Early Palliative Care Improves Patients' Quality of Life Also increases chances of having end- ... incurable cancer helps patients cope and improves their quality of life, a new study shows. It also ...

  9. Why Palliative Care for Children is Preferable to Euthanasia.

    PubMed

    Carter, Brian S

    2016-02-01

    Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia. PMID:25007796

  10. Practical Issues in Palliative and Quality-of-Life Care

    PubMed Central

    Hennessy, John E.; Lown, Beth A.; Landzaat, Lindy; Porter-Williamson, Karin

    2013-01-01

    Although palliative care is not new to health care or to oncology, oncologists still struggle to maximize the value of this type of care across the entire care continuum and across the patient's trajectory of illness. When we don't use what may be the best tools for the job, at the right times in the care path, we miss opportunities to optimize patient and family coping, to limit suffering, and to ensure that our care plans are patient centered. In this article, we look at how we define palliative care and how the tools of palliative medicine can be used to enhance patient care in the outpatient oncology practice setting. PMID:23814513

  11. Palliative care in COPD: an unmet area for quality improvement

    PubMed Central

    Vermylen, Julia H; Szmuilowicz, Eytan; Kalhan, Ravi

    2015-01-01

    COPD is a leading cause of morbidity and mortality worldwide. Patients suffer from refractory breathlessness, unrecognized anxiety and depression, and decreased quality of life. Palliative care improves symptom management, patient reported health-related quality of life, cost savings, and mortality though the majority of patients with COPD die without access to palliative care. There are many barriers to providing palliative care to patients with COPD including the difficulty in prognosticating a patient’s course causing referrals to occur late in a patient’s disease. Additionally, physicians avoid conversations about advance care planning due to unique communication barriers present with patients with COPD. Lastly, many health systems are not set up to provide trained palliative care physicians to patients with chronic disease including COPD. This review analyzes the above challenges, the available data regarding palliative care applied to the COPD population, and proposes an alternative approach to address the unmet needs of patients with COPD with proactive primary palliative care. PMID:26345486

  12. Retroperitoneal Endodermal Sinus Tumor Patient with Palliative Care Needs

    PubMed Central

    Kashyap, Surbhi

    2016-01-01

    This article is a case reflection of a personal encounter on the palliative care treatment required after the removal of a complicated case of a primary extra-gonadal retro-peritoneal endodermal sinus tumor (yolk sac tumor). This reflection is from the perspective of a recently graduated MD student who spent one month with an Indian pain management and palliative care team at the Institute Rotary Cancer Hospital (IRCH), All India Institute of Medical Sciences (AIIMS), New Delhi PMID:26962288

  13. Pain Assessment in Noncommunicative Adult Palliative Care Patients.

    PubMed

    McGuire, Deborah B; Kaiser, Karen Snow; Haisfield-Wolfe, Mary Ellen; Iyamu, Florence

    2016-09-01

    Palliative care patients who have pain are often unable to self-report their pain, placing them at increased risk for underrecognized and undertreated pain. Use of appropriate pain assessment tools significantly enhances the likelihood of effective pain management and improved pain-related outcomes. This paper reviews selected tools and provides palliative care clinicians with a practical approach to selecting a pain assessment tool for noncommunicative adult patients. PMID:27497016

  14. European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion

    PubMed Central

    2010-01-01

    Background The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. Discussion We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. Conclusions The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint. PMID:20836861

  15. Research Priorities in Geriatric Palliative Care: Informal Caregiving

    PubMed Central

    2013-01-01

    Abstract Background Informal care provided by family members is an essential feature of health care systems worldwide. Although caregiving often begins early in the disease process, over time informal caregivers must deal with chronic, debilitating, and life-threatening illnesses. Despite thousands of published studies on informal care, little is known about the intersection of informal caregiving and formal palliative care. Objective The goal of this review is to identify research priorities that would enhance our understanding of the relationship between informal caregiving and palliative care. Design To better understand palliative care in the context of caregiving, we provide an overview of the nature of a caregiving career from inception to care recipient placement and death and the associated tasks, challenges, and health effects at each stage of a caregiving career. This in turn leads to key unanswered questions designed to advance research in caregiving and palliative care. Results Little is known about the extent to which and how palliative care uniquely affects the caregiving experience. This suggests a need for more fine-grained prospective studies that attempt to clearly delineate the experience of caregivers during palliative and end-of-life phases, characterize the transitions into and out of these phases from both informal and formal caregiver perspectives, identify caregiver needs at each phase, and identify effects on key caregiver and patient outcomes. Conclusions Inasmuch as most caregivers must deal with chronic, debilitating, and often life-threatening conditions, it is essential that we advance a research agenda that addresses the interplay between informal care and formal palliative care. PMID:23883146

  16. Music therapy in the context of palliative care in Tanzania.

    PubMed

    Hartwig, Rebecca

    2010-10-01

    There has been much written to support music therapy as an adjunct in managing pain and anxiety in palliative care patients in Western societies, but little written on its use in developing countries. In light of increasing numbers of terminally ill patients in Tanzania owing to HIV/AIDS and cancer, limited access to opioids, and a growing interest in palliative care support, this study looks at the application of music in this context. The study reviews the history and principles of therapeutic music and outlines its role in palliative care. A qualitative study was conducted by questionnaire of 17 professionals involved in home-based palliative care in Tanzania. Findings include beliefs about the power of music, how music is being used to bring comfort to the dying patient, and the most important aspects of helpful music to many Tanzanian palliative care patients. Music can powerfully affect body, mind and spirit. It is vocal music, which is an accepted therapeutic music tool used to bring comfort to the palliative care patient and their family members. Finally, music is an active and participatory activity in Tanzanian culture, even for the dying. PMID:20972382

  17. Reflections on Palliative Care from the Jewish and Islamic Tradition

    PubMed Central

    Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil

    2012-01-01

    Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team. PMID:22203878

  18. Palliative Home Care: A Designer’s Perspective

    PubMed Central

    Bhatnagar, Tigmanshu

    2015-01-01

    The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice. PMID:26009683

  19. Day Care: Nutrition.

    ERIC Educational Resources Information Center

    Foster, Florence P.; And Others

    This collection of 12 short, bilingual papers on nutrition and preschool children is part of a series of papers on various aspects of day care published by the Canadian Department of Health and Welfare. Each paper is presented in both English and French. Topics dealt with include an overview of children's nutritional needs; development of…

  20. Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care

    PubMed Central

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

    2012-01-01

    Objective Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. Data Sources We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. Data Extraction and Synthesis We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Conclusions Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to

  1. Improving Palliative Care Team Meetings: Structure, Inclusion, and "Team Care".

    PubMed

    Brennan, Caitlin W; Kelly, Brittany; Skarf, Lara Michal; Tellem, Rotem; Dunn, Kathleen M; Poswolsky, Sheila

    2016-07-01

    Increasing demands on palliative care teams point to the need for continuous improvement to ensure teams are working collaboratively and efficiently. This quality improvement initiative focused on improving interprofessional team meeting efficiency and subsequently patient care. Meeting start and end times improved from a mean of approximately 9 and 6 minutes late in the baseline period, respectively, to a mean of 4.4 minutes late (start time) and ending early in our sustainability phase. Mean team satisfaction improved from 2.4 to 4.5 on a 5-point Likert-type scale. The improvement initiative clarified communication about patients' plans of care, thus positively impacting team members' ability to articulate goals to other professionals, patients, and families. We propose several recommendations in the form of a team meeting "toolkit." PMID:25794871

  2. Palliative care/physician-assisted dying: alternative or continuing care?

    PubMed

    Malakoff, Marion

    2006-01-01

    End-of-life care for dying patients has become an issue of importance to physicians as well as patients. The debate centers around whether the option of physician-assisted suicide cuts off, or diminishes the value of palliative care. This ongoing attention makes the crafting of advance directives from patients detailing their end-of-life choices essential. Equally important is the appointment of a health care surrogate. The surrogate, when the patient is too ill to make decisions, should be empowered to make them in his stead. No American court has found a clinician liable for wrongful death for granting a request to refuse life support. An entirely separate issue is that of legalized physician-assisted suicide. As of this writing, only Oregon has made this legal (see Gonzales v. Oregon). It is likely that this issue will be pursued slowly through the state courts, making advance directives and surrogacy all the more crucial. PMID:17219935

  3. Integrating palliative care in public health: the Colombian experience following an international pain policy fellowship.

    PubMed

    Leon, Marta; Florez, Sandra; De Lima, Liliana; Ryan, Karen

    2011-06-01

    Access to palliative care is insufficient in many countries around the world. In an effort to improve access to palliative care services and treatments, a public health approach as suggested by the World Health Organization was implemented in Colombia to improve opioid availability, increase awareness and competences about palliative care for healthcare workers, and to include palliative care as a component of care in legislation. As a result, opioid availability has improved, a mandatory palliative care course for medical undergraduate students has been implemented and a palliative care law is being discussed in the Senate. This article describes the strategy, main achievements and suggestions for implementing similar initiatives in developing countries. PMID:21228093

  4. Palliative care, double effect and the law in Australia.

    PubMed

    White, B P; Willmott, L; Ashby, M

    2011-06-01

    Care and decision-making at the end of life that promotes comfort and dignity is widely endorsed by public policy and the law. In ethical analysis of palliative care interventions that are argued potentially to hasten death, these may be deemed to be ethically permissible by the application of the doctrine of double effect, if the doctor's intention is to relieve pain and not cause death. In part because of the significance of ethics in the development of law in the medical sphere, this doctrine is also likely to be recognized as part of Australia's common law, although hitherto there have been no cases concerning palliative care brought before a court in Australia to test this. Three Australian States have, nonetheless, created legislative defences that are different from the common law with the intent of clarifying the law, promoting palliative care, and distinguishing it from euthanasia. However, these defences have the potential to provide less protection for doctors administering palliative care. In addition to requiring a doctor to have an appropriate intent, the defences insist on adherence to particular medical practice standards and perhaps require patient consent. Doctors providing end-of-life care in these States need to be aware of these legislative changes. Acting in accordance with the common law doctrine of double effect may not provide legal protection. Similar changes are likely to occur in other States and Territories as there is a trend towards enacting legislative defences that deal with the provision of palliative care. PMID:21707893

  5. Palliative Care in Enugu, Nigeria: Challenges to a New Practice

    PubMed Central

    Onyeka, Tonia C

    2011-01-01

    Everyone, young and old, male and female, rich and poor, should have access to excellent care during the course of a serious illness and at the end of life. Therefore, a denial of such care becomes an infringement of the individual's human rights. Because of the efforts of pioneers in this field of Medicine in Africa and beyond, both living and immortalized, we can now say that palliative care in the African context is affordable and achievable. In this article, some of the challenges faced in setting up and running a new palliative care practice in an emerging and developing economy are examined. PMID:21976853

  6. Integrating Pediatric Palliative Care into the School and Community.

    PubMed

    Davis, Kathleen G

    2016-10-01

    Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community. Cooperation between all caregivers benefit the child and family. PMID:27565367

  7. Palliative Care: The Relief You Need When You're Experiencing Symptoms of Serious Illness

    MedlinePlus

    ... doctors • palliative care nurses • social workers • chaplains • pharmacists • nutritionists • counselors and others 5 Special care that supports ... including medical and nursing specialists, social workers, pharmacists, nutritionists, clergy and others. Insurance pays for palliative care. ...

  8. Evidence of improved quality of life with pediatric palliative care.

    PubMed

    O'Quinn, Lucy P; Giambra, Barbara K

    2014-01-01

    Pediatric nurses provide holistic family-centered care for children with life-limiting illnesses while being sensitive to children's growth and developmental needs. To learn how pediatric palliative care programs benefit children and their families, the following clinical question was asked: Among children with a life-limiting illness, does the use of a palliative care program compared with not using a palliative care program improve quality of life for patients and their families? Evidence from two studies found that palliative care services improve quality of life for children with life-limiting illness and their families in the areas of the child's emotional well-being and parental perception of preparation for the child's end of life, resulting in a low grade for the body of evidence. Future research should include high quality studies with larger sample sizes and control groups, and include children's perspectives--from both patients and siblings--to give a more complete picture of how best to improve their quality of life. A reliable tool is needed that includes a spiritual component and sensitive indicators specific to children with a life-limiting illness. Future research using this tool will more fully answer how palliative care services improve children's quality of life. PMID:25929123

  9. Few Hospital Palliative Care Programs Meet National Staffing Recommendations.

    PubMed

    Spetz, Joanne; Dudley, Nancy; Trupin, Laura; Rogers, Maggie; Meier, Diane E; Dumanovsky, Tamara

    2016-09-01

    The predominant model for palliative care delivery, outside of hospice care, is the hospital-based consultative team. Although a majority of US hospitals offer palliative care services, there has been little research on the staffing of their program teams and whether those teams meet national guidelines, such as the Joint Commission's standard of including at least one physician, an advanced practice or other registered nurse, a social worker, and a chaplain. Data from the 2012-13 annual surveys of the National Palliative Care Registry indicate that only 25 percent of participating programs met that standard based on funded positions, and even when unfunded positions were included, only 39 percent of programs met the standard. Larger palliative care programs were more likely than smaller ones to include a funded physician position, while smaller programs were more reliant upon advanced practice and registered nurses. To meet current and future palliative care needs, expanded and enhanced education, as well as supportive financing mechanisms for consultations, are needed. PMID:27605652

  10. Methodological Research Priorities in Palliative Care and Hospice Quality Measurement.

    PubMed

    Dy, Sydney Morss; Herr, Keela; Bernacki, Rachelle E; Kamal, Arif H; Walling, Anne M; Ersek, Mary; Norton, Sally A

    2016-02-01

    Quality measurement is a critical tool for improving palliative care and hospice, but significant research is needed to improve the application of quality indicators. We defined methodological priorities for advancing the science of quality measurement in this field based on discussions of the Technical Advisory Panel of the Measuring What Matters consensus project of the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association and a subsequent strategy meeting to better clarify research challenges, priorities, and quality measurement implementation strategies. In this article, we describe three key priorities: 1) defining the denominator(s) (or the population of interest) for palliative care quality indicators, 2) developing methods to measure quality from different data sources, and 3) conducting research to advance the development of patient/family-reported indicators. We then apply these concepts to the key quality domain of advance care planning and address relevance to implementation of indicators in improving care. Developing the science of quality measurement in these key areas of palliative care and hospice will facilitate improved quality measurement across all populations with serious illness and care for patients and families. PMID:26596877

  11. Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

    PubMed Central

    2013-01-01

    Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to

  12. Palliative care outcome measures in COPD patients: a conceptual review.

    PubMed

    Antoniu, Sabina Antonela; Boiculese, Lucian Vasile

    2016-04-01

    In chronic obstructive pulmonary disease (COPD), palliative care is appropriate in very advanced stages based on recognition of its need when conventional therapy is no longer able to control symptoms, disease morbidity, or to improve/maintain an acceptable quality of life. Palliative care aims to improve quality of life, or, if applied specifically at the end-of-life, to ensure comfortable care. In COPD palliative care effectiveness of interventions should be quantified with outcome measures able to better capture the holistic nature of approaches and not only the specific features of disease. These should include: physical outcomes, psychological outcomes, social outcomes, spiritual outcomes. Such measures are discussed in this review along with arguments supporting their use. PMID:26967768

  13. Diet and Nutrition in Cancer Survivorship and Palliative Care

    PubMed Central

    Bazzan, Anthony J.; Newberg, Andrew B.; Cho, William C.; Monti, Daniel A.

    2013-01-01

    The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting. PMID:24288570

  14. The importance of measuring customer satisfaction in palliative care.

    PubMed

    Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco

    2016-03-01

    In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction. PMID:26837318

  15. Clinical trials in palliative care: an ethical evaluation.

    PubMed

    Janssens, R; Gordijn, B

    2000-08-01

    On first sight, clinical trials do not seem to fit well within the concept of palliative care. In palliative care, the needs and wishes of the patient set the norm while participation in experimental trials is potentially harmful for the patient. The dilemma seems hard to solve as optimal care for the dying and improvement of treatment for future patients are both imperative. Yet, the one seems to exclude the other. However, on closer examination it becomes less evident that clinical trials in palliative care confront us with an unsolvable dilemma. Some patients' lives may gain meaning through participation in trials out of solidarity with future patients. In order to clarify this, the notions of authenticity and hope can be illuminative. PMID:10900367

  16. When and why should patients with hematologic malignancies see a palliative care specialist?

    PubMed

    LeBlanc, Thomas W; El-Jawahri, Areej

    2015-01-01

    Palliative care is a multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients with serious illness and their families. It emphasizes well-being at any point along the disease trajectory, regardless of prognosis. The term "palliative care" is often incorrectly used as a synonym for end-of-life care, or "hospice care". However, palliative care does not require a terminal diagnosis or proximity to death, a misconception that we will address in this article. Multiple randomized clinical trials demonstrate the many benefits of early integration of palliative care for patients with cancer, including reductions in symptom burden, improvements in quality-of-life, mood, and overall survival, as well as improved caregiver outcomes. Thus, early concurrent palliative care integrated with cancer-directed care has emerged as a standard-of-care practice for patients with cancer. However, patients with hematologic malignancies rarely utilize palliative care services, despite their many unmet palliative care needs, and are much less likely to use palliative care compared to patients with solid tumors. In this article, we will define "palliative care" and address some common misconceptions regarding its role as part of high-quality care for patients with cancer. We will then review the evidence supporting the integration of palliative care into comprehensive cancer care, discuss perceived barriers to palliative care in hematologic malignancies, and suggest opportunities and triggers for earlier and more frequent palliative care referral in this population. PMID:26637760

  17. Inadequate Palliative Care in Chronic Lung Disease. An Issue of Health Care Inequality.

    PubMed

    Brown, Crystal E; Jecker, Nancy S; Curtis, J Randall

    2016-03-01

    Patients with chronic lung diseases suffer higher symptom burden, lower quality of life, and greater social isolation compared with patients with other diagnoses, such as cancer. These conditions may be alleviated by palliative care, yet palliative care is used less by patients with chronic lung disease compared with patients with cancer. Underuse is due, in part, to poor implementation of primary palliative care and inadequate referral to specialty palliative care. Lack of primary and specialty palliative care in patients with chronic lung disease falls short of the minimum standard of competent health care, and represents a disparity in health care and a social injustice. We invoke the ethical principles of justice and sufficiency to highlight the importance of this issue. We identify five barriers to implementing palliative care in patients with chronic lung disease: uncertainty in prognosis; lack of provider skill to engage in discussions about palliative care; fear of using opioids among patients with chronic lung disease; fear of diminishing hope; and perceived and implicit bias against patients with smoking-related lung diseases. We propose mechanisms for improving implementation of palliative care for patients with chronic lung disease with the goal of enhancing justice in health care. PMID:26730490

  18. Acceptance of dying: a discourse analysis of palliative care literature.

    PubMed

    Zimmermann, Camilla

    2012-07-01

    The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die. PMID:22513246

  19. Palliative care for people with dementia: a literature review.

    PubMed

    Lillyman, Sue; Bruce, Mary

    2016-02-01

    With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; undertreatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making. PMID:26926347

  20. Life is uncertain. death is certain. Buddhism and palliative care.

    PubMed

    Masel, Eva K; Schur, Sophie; Watzke, Herbert H

    2012-08-01

    It is part of a palliative care assessment to identify patients' spiritual needs. According to Buddhism, suffering is inherent to all human beings. Advice on how suffering can be reduced in the course of serious illness might be helpful to patients with incurable and progressive diseases. Palliative care could benefit from Buddhist insights in the form of compassionate care and relating death to life. Buddhist teachings may lead to a more profound understanding of incurable diseases and offer patients the means by which to focus their minds while dealing with physical symptoms and ailments. This might not only be beneficial to followers of Buddhism but to all patients. PMID:22871512

  1. Motion monitoring in palliative care using unobtrusive bed sensors.

    PubMed

    Holtzman, M; Goubran, R; Knoefel, F

    2014-01-01

    Palliative care needs are growing with the aging population. Ambient sensors offer patients comfortable and discreet point-of-care monitoring. In this study, two palliative care participants were monitored in a sensorized bed. Motion monitoring by a two-tier gross and fine movement detector provided accurate detection and classification of movement, compared to annotations by an observer. However, ascribing the motion to the patient rather than caregivers or visitors would require supplemental sensors. Motion was indicative of pain, with 13% of time spent moving while in pain versus 3% while not noted as in pain. PMID:25571304

  2. A comprehensive review of palliative care in patients with cancer.

    PubMed

    Jaiswal, Reena; Alici, Yesne; Breitbart, William

    2014-02-01

    One of the most challenging roles for the psychiatrist is to help guide terminally ill patients physically, psychologically and spiritually through the dying process. Patients with advanced cancer, and other life-threatening medical illnesses are at increased risk for developing major psychiatric complications and have an enormous burden of both physical as well as psychological symptoms. In fact, surveys suggest that psychological symptoms such as depression, anxiety, and hopelessness are as frequent, if not more so, than pain and other physical symptoms in palliative care settings. Psychiatrists have a unique role and opportunity to offer competent and compassionate palliative care to those with life-threatening illness. In this article we provide a comprehensive review of basic concepts and definitions of palliative care and the experience of dying, and the role of the psychiatrist in palliative care including assessment and management of common psychiatric disorders in the terminally ill, with an emphasis on suicide and desire for hastened death. Psychotherapies developed for use in palliative care settings, and management of grief and bereavement are also reviewed. PMID:24716503

  3. Family Day Care Training Curriculum.

    ERIC Educational Resources Information Center

    Nakatsu, Gail

    California's Family Day Care Training Program was designed to recruit and train in 7 weeks, Lao, Vietnamese, and Chinese refugees to establish their own state-licensed, family day care homes. Topics in the program's curriculum include an introduction to family day care, state licenses for family day care, state licensing requirements for family…

  4. [The role of the mobile palliative care team nurse].

    PubMed

    Chrétien, Sophie

    2015-11-01

    The mobile palliative care and support team nurse works in different departments within the hospital. The clinical situation of a patient enables the team to identify in what ways she is declining and thereby participate in the care management in order to favour the patient's return home. PMID:26567068

  5. Palliative care for advanced dementia in Japan: knowledge and attitudes.

    PubMed

    Nakanishi, Miharu; Miyamoto, Yuki

    This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 long-term care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician's written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia. PMID:26878406

  6. Silent night: retrospective database study assessing possibility of “weekend effect” in palliative care

    PubMed Central

    Voltz, Raymond; Kamps, Robert; Greinwald, Ralf; Hellmich, Martin; Hamacher, Stefanie; Becker, Gerhild; Kuhr, Kathrin

    2014-01-01

    Objective To compare the mortality of patients in a palliative care unit on working days with that on weekends and public holidays. Design Retrospective database study. Setting Palliative care unit in Germany. Population All admissions to palliative care unit between 1 January 1997 and 31 December 2008. Main outcome measure The impact of day type (working days or weekends and public holidays) on mortality was analysed using Poisson regression models. Results A total of 2565 admitted patients and 1325 deaths were recorded. Of the deaths, 448 (33.8%) occurred on weekends and public holidays. The mortality rate on weekends and public holidays was 18% higher than that on working days (mortality rate ratio 1.18, 95% confidence interval 1.05 to 1.32; P=0.005). Conclusion Patients in the palliative care unit were at higher risk of dying on weekends and public holidays. In the absence of a prospective study, the exact reasons for this correlation are unclear. PMID:25515670

  7. Cultural and religious considerations in pediatric palliative care

    PubMed Central

    WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA

    2012-01-01

    Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children

  8. The role of palliative care in population management and accountable care organizations.

    PubMed

    Smith, Grant; Bernacki, Rachelle; Block, Susan D

    2015-06-01

    By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, "triggered" interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment. PMID:25723619

  9. The Role of Palliative Care in Population Management and Accountable Care Organizations

    PubMed Central

    Smith, Grant; Block, Susan D.

    2015-01-01

    Abstract By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, “triggered” interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment. PMID:25723619

  10. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

    PubMed Central

    Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

    2015-01-01

    Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

  11. Physician-assisted death with limited access to palliative care.

    PubMed

    Barutta, Joaquín; Vollmann, Jochen

    2015-08-01

    Even among advocates of legalising physician-assisted death, many argue that this should be done only once palliative care has become widely available. Meanwhile, according to them, physician-assisted death should be banned. Four arguments are often presented to support this claim, which we call the argument of lack of autonomy, the argument of existing alternatives, the argument of unfair inequalities and the argument of the antagonism between physician-assisted death and palliative care. We argue that although these arguments provide strong reasons to take appropriate measures to guarantee access to good quality palliative care to everyone who needs it, they do not justify a ban on physician-assisted death until we have achieved this goal. PMID:25614156

  12. The management of family conflict in palliative care.

    PubMed

    Lichtenthal, Wendy G; Kissane, David W

    2008-02-01

    We review the literature on family conflict in palliative care. The prevalence and common sources of conflict are discussed, including historical issues of tension, differing coping styles, the division of labour, and the presence of acute or chronic mental illness within the family. Assessment and intervention strategies used in Family Focused Grief Therapy (FFGT), a family-centred preventive intervention that begins during palliative care and continues during bereavement, are presented, with special consideration given to research on treatment decision-making, cultural issues, special-needs populations, and the management of crises within the family. We conclude with a discussion of challenges that frequently impede conflict resolution and with suggestions for addressing these difficulties in the palliative care setting. PMID:24027358

  13. Development and efficacy of music therapy techniques within palliative care.

    PubMed

    Clements-Cortés, Amy

    2016-05-01

    Music therapy is increasingly becoming an intervention used in palliative care settings around the globe. While the specialty of palliative care music therapy is relatively young having emerged in the late 1980s, there is a strong and growing body of evidence demonstrating its efficacy in assisting a variety of issues common at end-of-life. There are multiple music therapy techniques that are implemented with clients in palliative care and they can be categorized in four broad areas: receptive, creative, recreative and combined. These techniques will be presented with respect to their development by clinicians as supported by the descriptive and research literature. Information is also provided on the use of music therapy in facilitating the grieving and bereavement process. PMID:25986297

  14. Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

    PubMed

    Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J

    2016-01-01

    People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population. PMID:27053406

  15. The palliative care needs of ethnic minority patients: staff perspectives.

    PubMed

    Diver, Fiona; Molassiotis, Alexander; Weeks, Les

    2003-08-01

    The aim of this study was to assess palliative care staff's perceptions of multicultural care provision and explore the barriers and facilitators to culturally sensitive care. Qualitative semi-structured interviews with five palliative care staff were conducted. Staff showed awareness of inter-cultural diversity and the importance of individualized care. It also became apparent that staff did not possess ethnocentric attitudes. Facilitators of multicultural care that emerged from the data included training, learning from experience, the use of culturally specific literature and resources, and effective communication channels in the team. However, barriers were present, including limited interpreting services, and some staff and other patients' negative behaviours towards ethnic minority patients. The findings lead to recommendations for better resourcing and expansion of interpreting services, and for more training, based on staff's desire for limited culturally specific knowledge in sensitive combination with an individualized care philosophy. PMID:12968120

  16. Dimensions of privacy in palliative care: views of health professionals.

    PubMed

    Street, Annette F; Love, Anthony

    2005-04-01

    This paper explores the dimensions of privacy evident in the views of practice of health professionals in different inpatient palliative care settings. Eighty-eight semi-structured interviews were conducted with doctors, nurses and pastoral carers at 12 Australian regional and metropolitan locations. Transcribed interviews were coded and discursively content analysed. Privacy was one category that emerged in the transcript analysis. Results showed the necessity of attending to the physical, psycho-social and moral dimensions of privacy in the provision of palliative care that respects dignity, autonomy and supportive social relationships. PMID:15686810

  17. Intercultural palliative care: do we need cultural competence?

    PubMed

    Gunaratnam, Yasmin

    2007-10-01

    Recognition of the importance of 'cultural competence' is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from 'minority ethnic' groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care. PMID:18073705

  18. Palliative care team visits. Qualitative study through participant observation

    PubMed Central

    Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

    2016-01-01

    Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663

  19. [Palliative care: an approach based on the professional health categories].

    PubMed

    Hermes, Hélida Ribeiro; Lamarca, Isabel Cristina Arruda

    2013-09-01

    Palliative care has emerged as a humanitarian philosophy of caring for terminally ill patients, alleviating their pain and suffering. This care involves the action of an interdisciplinary team, in which all the professional recognize the limits of their performance will help the terminally ill patient to die with dignity. This article deals with the issue of death and dying, both from the traditional and the contemporary standpoint, and how palliative care have been treated in the job categories of medicine, social work, psychology and nursing. The methodology of this study consists of a literature review of articles in the SciELO database, electronic journals and technical books related to the topic. Analysis of the articles revealed a shortage of subjects that deal with the theme of death in professional curricula, as well as few palliative care services in Brazilian society and barriers faced by this new approach to the terminal patient. This research aims to broaden the discussion of palliative care in public health, and provide information for future studies that will address the theme. PMID:23989564

  20. Treating nausea and vomiting in palliative care: a review

    PubMed Central

    Glare, Paul; Miller, Jeanna; Nikolova, Tanya; Tickoo, Roma

    2011-01-01

    Nausea and vomiting are portrayed in the specialist palliative care literature as common and distressing symptoms affecting the majority of patients with advanced cancer and other life-limiting illnesses. However, recent surveys indicate that these symptoms may be less common and bothersome than has previously been reported. The standard palliative care approach to the assessment and treatment of nausea and vomiting is based on determining the cause and then relating this back to the “emetic pathway” before prescribing drugs such as dopamine antagonists, antihistamines, and anticholinergic agents which block neurotransmitters at different sites along the pathway. However, the evidence base for the effectiveness of this approach is meager, and may be in part because relevance of the neuropharmacology of the emetic pathway to palliative care patients is limited. Many palliative care patients are over the age of 65 years, making these agents difficult to use. Greater awareness of drug interactions and QTc prolongation are emerging concerns for all age groups. The selective serotonin receptor antagonists are the safest antiemetics, but are not used first-line in many countries because there is very little scientific rationale or clinical evidence to support their use outside the licensed indications. Cannabinoids may have an increasing role. Advances in interventional gastroenterology are increasing the options for nonpharmacological management. Despite these emerging issues, the approach to nausea and vomiting developed within palliative medicine over the past 40 years remains relevant. It advocates careful clinical evaluation of the symptom and the person suffering it, and an understanding of the clinical pharmacology of medicines that are available for palliating them. PMID:21966219

  1. The PERS(2) ON score for systemic assessment of symptomatology in palliative care: a pilot study.

    PubMed

    Masel, E K; Berghoff, A S; Schur, S; Maehr, B; Schrank, B; Simanek, R; Preusser, M; Marosi, C; Watzke, H H

    2016-07-01

    The comprehensive assessment of symptoms is the basis for effective, individualised palliative treatment. Established scoring systems provide in-depth information but are often lengthy and hence unsuitable. We introduce the PERS(2) ON score as a short and practically feasible score to evaluate symptom burden. Fifty patients admitted to a Palliative Care Unit rated seven items, i.e. pain, eating (loss of appetite/weight loss), rehabilitation (physical impairment), social situation (possibility for home care), suffering (anxiety/burden of disease/depression), O2 (dyspnoea) and nausea/emesis, on a scale ranging from 0 (absence) to 10 (worst imaginable), resulting in a score ranging from 0 to 70. Assessments were performed at admission, 7 days after admission and at the day of discharge. Symptom intensity scores were calculated, and change over time was evaluated. A significant improvement was observed from the PERS²ON score between admission and 7 days (P < 0.001; paired t-test). Significant improvement from baseline evaluation to evaluation on the day of discharge was observed (P = 0.001; paired t-test). This study provides initial evidence that the PERS²ON score is both feasible and sensitive to changes of the most prominent symptoms in palliative care. It may be useful in clinical practice to direct palliative treatment strategies and provide targeted symptom management. PMID:26564404

  2. Barriers to using palliative care: insight into African American culture.

    PubMed

    Drisdom, Sheronda

    2013-08-01

    As the hospice care setting becomes more racially and ethnically diverse, attending to the different conditions and needs of various groups is essential to providing optimal care. African Americans make up only a small percentage of hospice users in the United States. This article highlights barriers associated with the underenrollment of African Americans into hospice and palliative care programs. A thorough analysis of the literature was conducted to define hospice and palliative care and assess circumstances that impact the use of hospice services by African Americans. Many African Americans are not choosing hospice care because of cultural issues or knowledge deficits, whether through lack of communication or low literacy. Healthcare providers can begin by familiarizing themselves with hospice organizations and developing and putting into practice strategies to communicate with and educate patients and families about hospice care in a culturally sensitive manner. PMID:23899976

  3. The global state of palliative care-progress and challenges in cancer care.

    PubMed

    Reville, Barbara; Foxwell, Anessa M

    2014-07-01

    All persons have a right to palliative care during cancer treatment and at the end-of-life. The World Health Organization (WHO) defines palliative care as a medical specialty that addresses physical, psychological, social, legal, and spiritual domains of care by an interdisciplinary team of professional and lay health care providers. Widespread adoption of this universal definition will aid policy development and educational initiatives on a national level. The need for palliative care is expanding due to the aging of the world's population and the increase in the rate of cancer in both developed and developing countries. However, in one third of the world there is no access to palliative care for persons with serious or terminal illness. Palliative care improves symptoms, most frequently pain, and improves quality of life for patients and their families, especially in the terminal disease phase. Accessibility to palliative care services, adequately trained health care professionals, availability of essential medicines, and gaps in education vary greatly throughout the world. Pain management is an integral concept in the practice of palliative care; however, opioiphobia, insufficient supply of opioids, and regulatory restrictions contribute to undue suffering for millions. Ongoing advocacy efforts call for increased awareness, palliative care integration with cancer care, and public and professional education. Enacting necessary change will require the engagement of health ministries and the recognition of the unique needs and resources of each country. The aim of this review is to examine progress in palliative care development and explore some of the barriers influencing cancer care across the globe. PMID:25841689

  4. Palliative care provision for patients with chronic obstructive pulmonary disease.

    PubMed

    Yohannes, Abebaw Mengistu

    2007-01-01

    Chronic obstructive pulmonary disease (COPD) is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD) which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic incurable disease; those in an

  5. Palliative care provision for patients with chronic obstructive pulmonary disease

    PubMed Central

    Yohannes, Abebaw Mengistu

    2007-01-01

    Chronic obstructive pulmonary disease (COPD) is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD) which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic incurable disease; those in an

  6. [Palliative care network, from coordination towards the integration of players].

    PubMed

    Prudent, Joëlle

    2015-11-01

    The ageing of the population and increase in progressive chronic pathologies constitute a major challenge for society. In parallel, the array of care systems and the partitioning between the different players pose organisational and conceptual difficulties. In the face of this, a palliative care network can seize the opportunity to develop its missions to improve the care pathway for patients and make it easier for them to remain at home. PMID:26567069

  7. Reality of evidence-based practice in palliative care.

    PubMed

    Visser, Claire; Hadley, Gina; Wee, Bee

    2015-09-01

    There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by 'gold standard' randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patient's physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a 'mixed methods approach' are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes. PMID:26487964

  8. Development and Evaluation of a Staff Training Program on Palliative Care for Persons with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Hahn, Joan E.; Cadogan, Mary P.

    2011-01-01

    Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop,…

  9. Palliative care in end-stage kidney disease.

    PubMed

    Fassett, Robert G; Robertson, Iain K; Mace, Rose; Youl, Loren; Challenor, Sarah; Bull, Rosalind

    2011-01-01

    Patients with end-stage kidney disease have significantly increased morbidity and mortality. While greater attention has been focused on advanced care planning, end-of-life decisions, conservative therapy and withdrawal from dialysis these must be supported by adequate palliative care incorporating symptom control. With the increase in the elderly, with their inherent comorbidities, accepted onto dialysis, patients, their nephrologists, families and multidisciplinary teams, are often faced with end-of-life decisions and the provision of palliative care. While dialysis may offer a better quality and quantity of life compared with conservative management, this may not always be the case; hence the patient is entitled to be well-informed of all options and potential outcomes before embarking on such therapy. They should be assured of adequate symptom control and palliative care whichever option is selected. No randomized controlled trials have been conducted in this area and only a small number of observational studies provide guidance; thus predicting which patients will have poor outcomes is problematic. Those undertaking dialysis may benefit from being fully aware of their choices between active and conservative treatment should their functional status seriously deteriorate and this should be shared with caregivers. This clarifies treatment pathways and reduces the ambiguity surrounding decision making. If conservative therapy or withdrawal from dialysis is chosen, each should be supported by palliative care. The objective of this review is to summarize published studies and evidence-based guidelines, core curricula, position statements, standards and tools in palliative care in end-stage kidney disease. PMID:21175971

  10. How Palliative Care Helped Me Make an Important Decision in My Life.

    PubMed

    Nair, Bindu

    2015-01-01

    The author writes about her father's illness and how her knowledge of palliative care and "dying with dignity" helped her make important decisions for her father in his last days. She and her family members were able to give him the kind of care he needed and desired. He could enjoy the time he had left, and the family had the satisfaction of serving him when he needed them. PMID:26654415

  11. Design of a Postgraduate Course in Palliative Care.

    ERIC Educational Resources Information Center

    Adriaansen, Marian J. M.; Frederiks, Carla M. A.

    2002-01-01

    A postgraduate course on palliative nursing includes four class sessions and four peer review meetings in which students discuss case studies and assignments. The course is intended to prepare nurses for the bureaucratic, biomedical, social-therapeutic, and informal roles of terminal care. (SK)

  12. Management of delirium in palliative care: a review.

    PubMed

    Grassi, Luigi; Caraceni, Augusto; Mitchell, Alex J; Nanni, Maria Giulia; Berardi, Maria Alejandra; Caruso, Rosangela; Riba, Michelle

    2015-03-01

    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 (terminal delirium). By reviewing the most relevant studies (MEDLINE, EMBASE, PsycLit, PsycInfo, Cochrane Library), a correct assessment to make the diagnosis (e.g., DSM-5, delirium assessment tools), the identification of the possible etiological factors, and the application of multicomponent and integrated interventions were reported as the correct steps to effectively manage delirium in palliative care. In terms of medications, both conventional (e.g., haloperidol) and atypical antipsychotics (e.g., olanzapine, risperidone, quetiapine, aripiprazole) were shown to be equally effective in the treatment of delirium. No recommendation was possible in palliative care regarding the use of other drugs (e.g., α-2 receptors agonists, psychostimulants, cholinesterase inhibitors, melatonergic drugs). Non-pharmacological interventions (e.g., behavioral and educational) were also shown to be important in the management of delirium. More research is necessary to clarify how to more thoroughly manage delirium in palliative care. PMID:25663153

  13. Issues in Rural Palliative Care: Views from the Countryside

    ERIC Educational Resources Information Center

    Robinson, Carole A.; Pesut, Barbara; Bottorff, Joan L.

    2010-01-01

    Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.…

  14. The Nurses' Knowledge and Attitudes towards the Palliative Care

    ERIC Educational Resources Information Center

    Ayed, Ahmad; Sayej, Sumaya; Harazneh, Lubna; Fashafsheh, Imad; Eqtait, Faeda

    2015-01-01

    Background: Palliative care (PC) is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems like physical, psychosocial and…

  15. Palliative Care for Extremely Premature Infants and Their Families

    ERIC Educational Resources Information Center

    Boss, Renee D.

    2010-01-01

    Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…

  16. [Palliative care in non-cancer, chronic, progressive diseases].

    PubMed

    Radványi, Ildikó; Nagy, Lajos; Balogh, Sándor; Csikós, Ágnes

    2015-10-18

    Malignant and other chronic diseases cause the death of 2.5 million people in Europe annually. It is anticipated that this number will grow due to the aging of the European population. The death of a significant proportion of patients having progressive chronic disease is preceded by an extended end of life stadium. In this stage the patients have severe symptoms and pain that necessitate their symptomatic treatment and palliative care. The assessment of the life expectancy of patients, estimation of the prognosis of their illness and, therefore, selection of patients with a need of intensified palliative care often pose difficulties. This paper provides a summary on the basic elements of "good palliative care". It introduces the most frequent models for the procession of chronic diseases and those indicators that help practicing doctors to recognise easier patients with a need of intensified palliative care, and as a result provides more adequate medical attendance that is better suited to the specific needs of the patients. PMID:26551310

  17. The web site of the center to advance palliative care.

    PubMed

    Gavrin, Jonathan R

    2004-01-01

    The web site of the Center to Advance Palliative Care is reviewed. This is an excellent resource containing resources that address financial tutorials and customizable Excel worksheets, development and marketing tools, particularly the decision checklists, satisfaction tools, the information on tracking and reporting outcomes, bereavement tools and a press kit. PMID:15760811

  18. [Palliative care: accompanying persons at the end of life].

    PubMed

    Espinar Cid, Victoria

    2012-01-01

    The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions. PMID:22548665

  19. An unusual cause of vomiting in a palliative care setting.

    PubMed

    Railsback, Linda

    2011-09-01

    Control of symptoms, including nausea and vomiting, is central to palliative care. Self-induced vomiting in a middle-aged male patient with a life-limiting abdominal malignancy provided a challenge in diagnosis and management. This case report discusses diagnostic and therapeutic considerations. PMID:21838953

  20. When Hospice Fails: The Limits of Palliative Care.

    ERIC Educational Resources Information Center

    Logue, Barbara J.

    1994-01-01

    Examines feasibility of palliative approach for all patients, showing reasonable people may refuse even the most exemplary care for themselves or an incompetent relative. Medical realities and alleviation of pointless suffering necessitate that policymakers consider other options, including "active" euthanasia, consistent with patient autonomy and…

  1. Perspectives on Infant Day Care.

    ERIC Educational Resources Information Center

    Elardo, Richard, E.; Pagan, Betty, Ed.

    These proceedings of the first annual SACUS workshop on infant day care contain the papers presented at the conference, plus an appendix--Developmental Objectives for Infants and Toddlers. The papers are: "Infant Day Care--Fads, Facts, and Fancies" by Bettye M. Caldwell; "Family Day Care""A Broad Perspective" by Malcolm S. Host; "Getting…

  2. Family Day Care Provider Handbook

    ERIC Educational Resources Information Center

    New York State Office of Children and Family Services, 2006

    2006-01-01

    Family day care providers are responsible for creating a high-quality program where children have opportunities to grow, learn and thrive. Part of providing high-quality child care includes complying with the family day care regulations from the New York State Office of Children and Family Services (OCFS). This Handbook will help day care…

  3. Adult Day Care

    MedlinePlus

    ... care Physical therapy Recreation Respite care Socialization Supervision Transportation Medication management Back to top Center Operations Centers ... social activities. They may also help to arrange transportation to and from the center. Back to top ...

  4. Palliative Care Psychiatry: Update on an Emerging Dimension of Psychiatric Practice

    PubMed Central

    Fairman, Nathan

    2013-01-01

    Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027

  5. Benchmarking: a tool for excellence in palliative care.

    PubMed

    Murray, J A; Murray, M H

    1992-01-01

    Quietly and without fanfare, total quality management (TQM) is being implemented in a branch of health care where quality of care has particular impact on the patient's comfort and well-being. Some palliative care providers, dedicated to improving the quality of life for the dying, have fulfilled all the criteria to be contenders for prestigious quality honors like the Baldrige Award in the United States and the Canada Award for Excellence. Their secret is simple: the patient defines quality, and the palliative care team acts on that definition. Benchmarking, a TQM tool, allows institutions and organizations to benefit from sharing their best processes, and keeps the TQM continuous improvement cycle on track. PMID:1487793

  6. Inoperable esophageal cancer and outcome of palliative care

    PubMed Central

    Besharat, Sima; Jabbari, Ali; Semnani, Shahryar; Keshtkar, Abbasali; Marjani, Jeran

    2008-01-01

    AIM: To determine the outcome of esophageal cancer patients referred for palliative care, in Gorgan and Gonbad gastrointestinal clinics, northeast of Iran. METHODS: This cross-sectional study was done on inoperable esophageal cancer cases referred to gastrointestinal clinics in Gorgan and Gonbad city (2005-2006). Demographic data were collected during the procedure and cases were followed up every one month. Improvement proportion was calculated with 95% confidence interval, to determine the rate of improvement. Survival analysis and Kaplan-Meier methods were used to estimate the duration of palliative care effectiveness. RESULTS: We recruited 39 cases into the study. Squamous cell carcinoma was the most prevalent (92.3%). The middle third of the esophagus was involved predominantly (51.3%). Dilation was the most preferred method (89.7%) and stenting was done in 4 cases. Decreasing dysphagia score was not related to palliation method or pathology type of carcinoma. Age of the patients was significantly related to the improvement of dysphagia score. Mean survival time was 137.6 d and median was 103 d. CONCLUSION: Results of this study showed a low survival rate after palliative care in esophageal cancer cases despite dysphagia scores’ improvement after dilating or stenting. PMID:18595139

  7. Elements of effective palliative care models: a rapid review

    PubMed Central

    2014-01-01

    Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its

  8. The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia

    ERIC Educational Resources Information Center

    McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin

    2011-01-01

    Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…

  9. Pharmacovigilance in hospice/palliative care: net effect of gabapentin for neuropathic pain

    PubMed Central

    Sanderson, Christine; Quinn, Stephen J; Agar, Meera; Chye, Richard; Clark, Katherine; Doogue, Matthew; Fazekas, Belinda; Lee, Jessica; Lovell, Melanie R; Rowett, Debra; Spruyt, Odette; Currow, David C

    2015-01-01

    Objective Hospice/palliative care patients may differ from better studied populations, and data from other populations cannot necessarily be extrapolated into hospice/palliative care clinical practice. Pharmacovigilance studies provide opportunities to understand the harms and benefits of medications in routine practice. Gabapentin, a γ-amino butyric acid analogue antiepileptic drug, is commonly prescribed for neuropathic pain in hospice/palliative care. Most of the evidence however relates to non-malignant, chronic pain syndromes (diabetic neuropathy, postherpetic neuralgia, central pain syndromes, fibromyalgia). The aim of this study was to quantify the immediate and short-term clinical benefits and harms of gabapentin in routine hospice/palliative care practice. Design Multisite, prospective, consecutive cohort. Population 127 patients, 114 of whom had cancer, who started gabapentin for neuropathic pain as part of routine clinical care. Settings 42 centres from seven countries. Data were collected at three time points—at baseline, at day 7 (and at any time; immediate and short-term harms) and at day 21 (clinical benefits). Results At day 21, the average dose of gabapentin for those still using it (n=68) was 653 mg/24 h (range 0–1800 mg) and 54 (42%) reported benefits, of whom 7 (6%) experienced complete pain resolution. Harms were reported in 39/127 (30%) patients at day 7, the most frequent of which were cognitive disturbance, somnolence, nausea and dizziness. Ten patients had their medication ceased due to harms. The presence of significant comorbidities, higher dose and increasing age increased the likelihood of harm. Conclusions Overall, 42% of people experienced benefit at a level that resulted in continued use at 21 days. PMID:25324335

  10. Palliative and end of life care for people living with dementia in care homes: part 1.

    PubMed

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-22

    The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care. PMID:27332611

  11. Designing research with hospice and palliative care populations.

    PubMed

    Wohleber, Ashley M; McKitrick, Daniel S; Davis, Shawn E

    2012-08-01

    Research in palliative care and hospice populations is important for improving quality of care, quality of life, and provider understanding of individuals at the end of life. However, this research involves many potential challenges. This review seeks to inform and assist researchers targeting to design studies targeting hospice and palliative care patients by presenting a thorough review of the published literature. This review covers English-language articles published from 1990 through 2009 listed in the PsycInfo, Medline, or CINAHL research databases under relevant keywords. Articles on pediatric hospice were not included. Issues discussed include study design, informed consent, and recruitment for participants. Synthesized recommendations for researchers in these populations are presented. PMID:22104045

  12. Operationalizing reflexivity to improve the rigor of palliative care research.

    PubMed

    Johnston, Bridget; Pringle, Jan; Buchanan, Deans

    2016-08-01

    Reflective practice involves deliberate consideration of actions, attitudes and behaviors. Reflexivity in research is considered important for ensuring that research is ethically and rigorously conducted. This paper details the challenges of conducting research involving patients with palliative care needs within the acute hospital environment. It discusses the contribution of reflexivity to a pilot study using the Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" as a brief intervention to foster a more person-centered climate. Challenges that emerged are discussed from the perspectives of the researchers, the participants, and the setting; they relate to: timing and recruitment, the nature of palliative care illness, attitudes to research, and the research environment. Awareness of such issues can prompt researchers to devise appropriate strategies and approaches that may inform and assist the rigor and conduct of future research. PMID:26620579

  13. Teaching Palliative Care Across Cultures: The Singapore Experience

    PubMed Central

    Breaden, Katrina

    2011-01-01

    Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline. PMID:21811364

  14. Discussing the Evidence for Upstream Palliative Care in Improving Outcomes in Advanced Cancer.

    PubMed

    LeBlanc, Thomas W; Nickolich, Myles S; El-Jawahri, Areej; Temel, Jennifer S

    2016-01-01

    Palliative care has received increasing attention at the American Society of Clinical Oncology (ASCO) Annual Meeting since the publication of its provisional clinical opinion on the topic in 2012. Despite frequent discussion, palliative care remains a source of some controversy and confusion in clinical practice, especially concerning who should provide it, what it encompasses, and when and how it can help patients and their families. In this article, we provide a formal definition of palliative care and review the state of the science of palliative care in oncology. Several randomized controlled trials now show that palliative care improves important outcomes for patients with cancer. Related outcome improvements include a reduction in symptoms, improved quality of life, better prognostic understanding, less depressed mood, less aggressive end-of-life care, reduced resource utilization, and even prolonged survival. As such, ASCO recommends early integration of palliative care into comprehensive cancer care for all patients with advanced disease and/or significant symptom burden. Our aim is that this summary will facilitate greater understanding about palliative care and encourage further integration of palliative care services into cancer care. More research is needed to illuminate the mechanisms of action of palliative care and to improve the specificity of palliative care applications to unique scenarios and populations in oncology. PMID:27249764

  15. Assessing the effectiveness and acceptability of interprofessional palliative care education.

    PubMed

    Koffman, Jonathan; Higginson, Irene J

    2005-01-01

    Interprofessional education in health care in general and palliative care has been the focus of increasing attention in recent years. However, there is still controversy about its outcomes and few courses have been evaluated. The aims of this evaluation were to explore (1) the career progression of former students who attended an interprofessional MSc in palliative care; (2) the activities former students were engaged in as a result of attending the course; and (3) the experience of attending an interprofessional postgraduate course in palliative care. Former students who attended the course between January 1998 and January 2004 were surveyed using a postal questionnaire. Of the 56 students who completed the course, 44 (79%) responded; 23 (52%) were doctors, 20 (45%) nurses, and one an occupational therapist. Career progression was significant for doctors (Z=-2.08, p=0.04) and for nurses (Z=-2.4, p=0.017). Thirty-nine (89%) former students believed this was due to attending the course. Former students described a wide range of clinical, research, and service development activities they were involved in as a result of attending the course. Qualitative data highlighted the benefits of attending an interprofessional course where the following themes became evident: lateral thinking, challenging misconceptions, enhancing teamwork opportunities, and professional networks and confidence. Funding should be made available to extend interprofessional education to a wide range of professionals who care for patients with advanced disease and their families. PMID:16483095

  16. The impact of an aging population on palliative care.

    PubMed

    O'Brien, Tony

    2013-12-01

    By 2050, it is predicted that 26% of the population will be aged 80 and over. Although older people have much to contribute, one challenging aspect of an aging population is the increasing rate of dementia. Palliative care is now included as part of the care pathway of a wide variety of nonmalignant diseases. The European Association for Palliative Care (EAPC) and the European Union Geriatric Medicine Society (EUGMS) have jointly called for every older citizen with chronic disease to be offered the best possible palliative care approach wherever they are cared for. This report is adapted from paineurope 2013; Issue 2, ©Haymarket Medical Publications Ltd., and is presented with permission. paineurope is provided as a service to pain management by Mundipharma International LTD. and is distributed free of charge to healthcare professionals in Europe. Archival issues can be accessed via the website: http://www.paineurope.com at which European health professionals can register online to receive copies of the quarterly publication. PMID:24303834

  17. What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey

    PubMed Central

    Beernaert, Kim; Deliens, Luc; Pardon, Koen; Van den Block, Lieve; Devroey, Dirk

    2015-01-01

    Background Many people who might benefit from specialist palliative care services are not using them. Aim We examined the use of these services and the reasons for not using them in a population in potential need of palliative care. Methods We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium. Results Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer). Conclusions Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority. PMID:26356477

  18. Clinical Effectiveness of Online Training in Palliative Care of Primary Care Physicians

    PubMed Central

    Perez-Hoyos, Santiago; Agra-Varela, Yolanda

    2013-01-01

    Abstract Background Primary care physicians (PCPs) have a major responsibility in the management of palliative patients. Online palliative care (PC) education has not been shown to have a clinical impact on patients that is equal or different to traditional training. Objective This study tested the clinical effectiveness of online PC education of physicians through impact on symptom control, quality of life (QOL), caregiver satisfaction, and knowledge-attitude of physicians at 18 months of the intervention. Methods We conducted a randomized clinical trial. Subjects were 169 physicians randomly assigned to receive the online model or traditional training. Consecutive patients with advanced cancer requiring PC were included. Physicians and patients completed the Palliative Care Outcome Scale (POS), and patients the Brief Pain Inventory (BPI) and the Rotterdam Symptom Checklist (RSCL) twice, 7 to 10 days apart. Caregivers completed the SERVQUAL. Physicians' level of knowledge-attitude was measured at 18 months. Results Sixty-seven physicians enrolled 117 patients. The intervention group had reduced scores for pain, symptoms, and family anxiety. The global RSCL scale showed a difference between groups. There was no significant difference in the questionnaires used. Caregiver satisfaction was comparable between groups. Physicians in the intervention group significantly increased their knowledge without any differences in attitude. Online training was completed by 86.6% in the intervention group, whereas 13.4% in the control group accessed traditional training. Conclusions Participation in an online PC education program by PCPs improved patient scores for some symptoms and family anxiety on the POS and also showed improved global QOL. Significant differences were found in physicians' knowledge at short and long term. PMID:23987657

  19. Perceptions of palliative care among hematologic malignancy specialists: a mixed-methods study

    PubMed Central

    LeBlanc, Thomas W.; O'Donnell, Jonathan D.; Crowley-Matoka, Megan; Rabow, Michael W.; Smith, Cardinale B.; White, Douglas B.; Tiver, Greer A.; Arnold, Robert M.; Schenker, Yael

    2016-01-01

    Background Patients with hematologic malignancies are less likely to receive specialist palliative care services than patients with solid tumors. Reasons for this difference are poorly understood. Methods This was a multisite, mixed-methods study to understand and contrast perceptions of palliative care among hematologic and solid tumor oncologists, using surveys assessing referral practices, and in-depth semi-structured interviews exploring views of palliative care. We compared referral patterns using standard statistical methods. We analyzed qualitative interview data using constant comparative methods, to explore reasons for observed differences. Results Among 66 interviewees, 23 oncologists cared exclusively for patients with hematologic malignancies; 43 treated only patients with solid tumors. Seven of 23 hematologic oncologists (30%) reported never referring to palliative care; all solid tumor oncologists had previously referred. In qualitative analyses, most hematologic oncologists viewed palliative care as end-of-life care, while most solid tumor oncologists viewed palliative care as a subspecialty that could assist with complex cases. Solid tumor oncologists emphasized practical barriers to palliative care referral, such as appointment availability and reimbursement issues. Hematologic oncologists emphasized philosophical concerns about palliative care referrals, including different treatment goals, responsiveness to chemotherapy, and a preference to control even palliative aspects of patient care. Conclusions Most hematologic oncologists view palliative care as end-of-life care, while solid tumor oncologists more often view palliative care as a subspecialty for co-managing complex patients. Efforts to integrate palliative care into hematologic malignancy practices will require solutions that address unique barriers to palliative care referral experienced by hematologic malignancy specialists. PMID:25784580

  20. Family as the primary caregiver: palliative care in the Golan Heights.

    PubMed

    Richman, Elon; Ringel, Amit; Kreniske, Jonah Susser; Safadi, Wajdi

    2015-01-01

    Palliative care is recognised by the WHO as an essential component of care for the seriously ill. Geographically isolated and historically underserved communities, particularly from ethnic minority groups, face obstacles in obtaining adequate palliative care. This case involves the care of a 26-year-old Druze man suffering from a terminal cancer in his Golan Heights village. Local physicians were able to train the patient's father in a palliative care capacity. In the effort of capacity building, the physician and palliative care team also aided the aggrieved family in the process of coping. Robust support networks, both at state and community levels, facilitated the care provided. In showcasing the role of the national and local safety net in activating and building community resources to address a dearth of palliative care services in disadvantaged regions, this case models a potentially effective community-based approach to palliative care for patients from underserved populations. PMID:25858919

  1. Palliative care and psychosocial contributions in the ICU.

    PubMed

    Loscalzo, Matthew J

    2008-01-01

    Psychosocial domains and palliative care medicine are the connective tissue of our fragmented health care system. The psychosocial domains of palliative care are central to creating new partnerships with physicians, patients, and their caregivers in emotionally charged medical environments, especially Intensive Care Units. Managing the psychological, social, emotional, spiritual, practical and existential reactions of patients and their loved ones supports effective action and problem-solving. Practical aspects to establishing realistic goals of care among the health care team and other specialists, communicating effectively with patients and families in crisis, using the diverse and ambiguous emotional responses of patients, families, faculty and staff therapeutically, and helping to create meaning in the experience is essential to whole-patient and family care centered. The family conference is an excellent vehicle to create an environment of honest and open communication focused on mobilizing the resources of the patient, family and health care team toward a mutually agreed upon plan of action resulting in clearly defined goals of care. PMID:19074130

  2. 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. PMID:25900977

  3. Management of Levofloxacin Induced Anaphylaxis and Acute Delirium in a Palliative Care Setting

    PubMed Central

    Ghoshal, Arunangshu; Damani, Anuja; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann

    2015-01-01

    Levofloxacin is a commonly prescribed antibiotic for managing chest and urinary tract infections in a palliative care setting. Incidence of Levofloxacin-associated anaphylaxis is rare and delirium secondary to Levofloxacin is a seldom occurrence with only few published case reports. It is an extremely rare occurrence to see this phenomenon in combination. Early identification and prompt intervention reduces both mortality and morbidity. A 17-year-old male with synovial sarcoma of right thigh with chest wall and lung metastasis and with no prior psychiatric morbidity presented to palliative medicine outpatient department with community-acquired pneumonia. He was initiated on intravenous (IV) Ceftriaxone and IV Levofloxacin. Post IV Levofloxacin patient developed anaphylaxis and acute delirium necessitating IV Hydrocortisone, IV Chlorpheneramine, Oxygen and IV Haloperidol. Early detection and prompt intervention helped in complete recovery. Patient was discharged to hospice for respite after 2 days of hospitalization and then discharged home. Acute palliative care approach facilitated management of two life-threatening medical complications in a palliative care setting improving both quality and length of life. PMID:25709191

  4. Gynaecological Malignancies from Palliative Care Perspective

    PubMed Central

    Mishra, Kamlesh

    2011-01-01

    Of the approximately 80,000 new cases of all cancers detected every year in India, 10–15% are gynecological malignancies. As per population-based registries under the National Cancer Registry Program, the leading sites of cancer among women are the cervix uteri, breast, and oral cavity. About 50–60% of all cancers among women in India are mainly of the following four organs: cervix uteri, breast, corpus uteri, and ovaries. Over 70% of these women report for diagnostic and treatment services at an advanced stage of disease, resulting in poor survival and high mortality rates. Among all gynecological cancers, ovarian cancer is the deadliest one and, in 2/3rd of the cases, is detected in an advanced stage. But, in India and in other developing countries, due to inadequate screening facilities for the preventable cancer cervix, this kills more women than any other cancer in females. Gynecology Oncologist as a sub-specialist has an immensely important role in curtailing the menace of gynecological malignancies by providing comprehensive preventive, curative, palliative and follow-up services, with the aim of assuring a good quality of life to women as a cornerstone of cancer management. PMID:21811372

  5. 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. PMID:27497022

  6. Intimate Partner Violence in an Outpatient Palliative Care Setting

    PubMed Central

    Wygant, Carmella; Bruera, Eduardo; Hui, David

    2013-01-01

    Although a few studies have evaluated intimate partner violence (IPV) in the oncology setting, to our knowledge no studies exist of IPV among palliative care patients. IPV may be exacerbated at the end of life because patients and their caregivers often experience significant stressors associated with physical, emotional, social, and financial burdens. We discuss IPV in the palliative care setting using the example of a patient with advanced cancer who experienced IPV. A better understanding and awareness of IPV at the end of life could help clinicians support and counsel patients and ameliorate the suffering caused by this “unspoken” trauma. We further discuss 1) the prevalence and indicators of IPV, 2) how to initiate conversations about IPV, 3) the resources available to clinicians, and 4) various management strategies. PMID:23948161

  7. Creating capacity through partnership: a palliative care skills development programme.

    PubMed

    Kelsall, Kay; Brennan, Ebony; Cole, Teresa

    2015-08-01

    This paper presents the development and implementation of a recurrently funded, rolling, 6-month palliative care secondment programme for NHS community staff nurses based in a rural health economy in Southwest England. The programme is a key tool in a wider development plan for improving access to, and the quality of, palliative and end-of-life care for a dispersed rural population. This is part of a much bigger programme of integration to meet the shared challenges of service capacity, equity, and sustainability that are presented by the geographical and demographical profile of the locality. The 'bigger picture' is defined and set in the context of the national drive and evidence base for integration in order to explain the reasons behind the secondment programme. This is followed by outlining the iterative process of design and implementation--the 'what?' and 'how?'--and key learning points to date are shared. PMID:26252232

  8. Trappings of technology: casting palliative care nursing as legal relations.

    PubMed

    Larsen, Ann-Claire

    2012-12-01

    Community palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in 'real time'. This paper is guided by Heidegger's approach to technologies and Habermas' insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing's professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients' legal rights to informational privacy and confidentiality. It explores nurses' views of their nursing responsibilities regarding clients' legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. PMID:23134278

  9. Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?

    PubMed Central

    Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Mauer, Christine

    2013-01-01

    The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper. PMID:24319482

  10. Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team.

    PubMed

    Stilos, Kalli; Daines, Pat

    2013-03-01

    Demand for palliative care services in Canada will increase owing to an aging population and the evolving role of palliative care in non-malignant illness. Increasing healthcare demands continue to shape the clinical nurse specialist (CNS) role, especially in the area of palliative care. Clinical nurse specialists bring specialized knowledge, skills and leadership to the clinical setting to enhance patient and family care. This paper highlights the clinical leadership role of the CNS as triage leader for a hospital-based palliative care consulting team. Changes to the team's referral and triage processes are emphasized as key improvements to team efficiency and timely access to care for patients and families. PMID:24863582

  11. Supportive and Palliative Care Research | Division of Cancer Prevention

    Cancer.gov

    Supportive and palliative care research includes studies to prevent or treat the acute and chronic symptoms and morbidities related to cancer and its treatment, and to examine the effects of cancer and its treatment on quality of life and psychosocial issues and treatment strategies at the end of life. Active Projects can range from caregiver issues to geriatrics, physical functioning to cognitive dysfunction.  | Examining symptoms and morbidities related to cancer, its treatment, quality of life and end of life.

  12. [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. PMID:25608370

  13. Animal-Assisted Therapy in Pediatric Palliative Care.

    PubMed

    Gilmer, Mary Jo; Baudino, Marissa N; Tielsch Goddard, Anna; Vickers, Donna C; Akard, Terrah Foster

    2016-09-01

    Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population. PMID:27497015

  14. Preliminary report of the integration of a palliative care team into an intensive care unit.

    PubMed

    O'Mahony, Sean; McHenry, Janet; Blank, Arthur E; Snow, Daniel; Eti Karakas, Serife; Santoro, Gabriella; Selwyn, Peter; Kvetan, Vladimir

    2010-03-01

    Nearly half of Americans who die in hospitals spend time in the intensive care unit (ICU) in the last 3 days of life. Minority patients who die in the ICU are less likely to formalize advance directives and surviving family members report lower satisfaction with the provision of information and sensitivity to their cultural traditions at the end-of-life. This is a descriptive report of a convenience sample of 157 consecutive patients served by a palliative care team which was integrated into the operations of an ICU at Montefiore Medical Center in the Bronx, New York, from August 2005 until August 2007. The team included an advance practice nurse (APN) and social worker. A separate case-control study was conducted comparing the length of hospital stay for persons who died in the ICU during the final 6 months of the project, prior to and post-palliative care consultation for 22 patients at the hospital campus where the project team was located versus 24 patients at the other campus. Pharmaco-economic data were evaluated for 22 persons who died with and 43 who died without a palliative care consultation at the intervention campus ICU to evaluate whether the project intervention was associated with an increase in the use of pain medications or alterations in the use of potentially non-beneficial life-prolonging treatments in persons dying in the ICU. Data was abstracted from the medical record with a standardized chart abstraction instrument by an unblinded research assistant. Interviews were conducted with a sample of family members and ICU nurses rating the quality of end-of-life care in the ICU with the Quality of Dying and Death in the ICU instrument (ICUQODD), and a family focus group was also conducted. Forty percent of patients were Caucasian, 35% were African American or Afro-Caribbean, 22% Hispanic and 3% were Asian or other. Exploration of the patients' and families' needs identified significant spiritual needs in 62.4% of cases. Education on the death

  15. Factors affecting recruitment to an observational multicentre palliative care study

    PubMed Central

    Stone, Patrick C; Gwilliam, Bridget; Keeley, Vaughan; Todd, Chris; Kelly, Laura C; Barclay, Stephen

    2013-01-01

    Objectives To identify those factors which adversely affected recruitment to a large multicentre palliative care study. Methods Patient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility—did the patient fulfil the study entry criteria? (2) Accessibility—was it possible to access the patient to be able to inform them about the study? (3) Consent—did the patient agree to participate in the study? The reasons why patients were ineligible, inaccessible or refused consent were recorded. Results 12 412 consecutive referrals to participating clinical services were screened for study inclusion of whom 5394 (43%) were deemed to be ineligible. Of the remaining patients 4617/7018 (66%) were inaccessible to the research team. The most common reasons being precipitous death, ‘gatekeeping’ by clinical staff or rapid discharge. Of the 2410 patients who were visited by the research team and asked to participate in the study 1378 (57%) declined. Overall 8.2% (1018/12 412) of patients screened participated in the study. There were significant differences in recruitment patterns between hospice inpatient units, hospital support and community palliative care teams. Conclusions Systematic monitoring and analysis of patient flows through the clinical trial accrual process provided valuable insights about the reasons for failure to recruit patients to a clinical trial and may help to improve recruitment in future studies. PMID:24644750

  16. Ethical issues and palliative care in the cardiovascular intensive care unit.

    PubMed

    Swetz, Keith M; Mansel, J Keith

    2013-11-01

    Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges. PMID:24188227

  17. Day Care Infection Control Protocol.

    ERIC Educational Resources Information Center

    Seattle-King County Dept. of Public Health, Seattle, WA.

    This day care infection control manual was assembled to provide technical guidance for the prevention and control of communicable diseases to child day care facilities in Seattle and King County, Washington. For each disease, the manual provides background information, public health control recommendations, and letters that can be used to…

  18. Day Care Center Enrichment Program.

    ERIC Educational Resources Information Center

    West Virginia State Dept. of Welfare, Charleston.

    This guide to a West Virginia Department of Welfare project for upgrading the quality of day care centers throughout the state presents samples of the forms used in the program, accompanied by a brief description of the program's format, requirements and procedures. The Day Care Center Enrichment Program provides a monetary incentive for…

  19. Day Care for America's Children.

    ERIC Educational Resources Information Center

    LaCrosse, E. Robert

    High quality day care is a pressing social need for the 1970's. Factors responsible for the strong interest in day care include pressures for welfare reform, the growing number of women in the labor force, minority pressures for equal opportunities, and research findings stressing the importance of development during the early years of a child's…

  20. Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence

    PubMed Central

    Salins, Naveen; Ramanjulu, Raghavendra; Patra, Lipika; Deodhar, Jayita; Muckaden, Mary Ann

    2016-01-01

    Introduction: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. Methods: The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper. Results: Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014

  1. Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback

    PubMed Central

    Nelson, J E; Mulkerin, C M; Adams, L L; Pronovost, P J

    2006-01-01

    Objective To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). Design Use of an interdisciplinary iterative process to create a prototype “bundle” of indicators within previously established domains of ICU palliative care quality; operationalization of indicators as specified measures; and pilot implementation to evaluate feasibility and baseline ICU performance. Setting The national Transformation of the Intensive Care Unit program developed in the United States by VHA Inc. Patients Critically ill patients in ICUs for 1, >3, and >5 days. Measurements and main results Palliative care processes including identification of patient preferences and decision making surrogates, communication between clinicians and patients/families, social and spiritual support, and pain assessment and management, as documented in medical records. Application is triggered by specified lengths of ICU stay. Pilot testing in 19 ICUs (review of >100 patients' records) documented feasibility, while revealing opportunities for quality improvement in clinician‐patient/family communication and other key components of ICU palliative care. Conclusions The new bundle of measures is a prototype for routine measurement of the quality of palliative care in the ICU. Further investigation is needed to confirm associations between measured processes and outcomes of importance to patients and families, as well as other aspects of validity. PMID:16885251

  2. An interprofessional education programme for medical learners during a one-month palliative care rotation.

    PubMed

    Stilos, Kalli; Daines, Patricia; Moore, Jennifer

    2016-04-01

    Interprofessional education in health care and in palliative care has been the focus of increasing attention in recent years. For health professionals to provide and deliver high-quality palliative care, collaboration and teamwork is required. Palliative care is the ideal service to introduce interprofessional teamwork to medical learners early on in their training. During a 1-month palliative care rotation in Ontario, Canada, medical learners completed a questionnaire seeking their feedback on the interprofessional team model. This article will highlight the results of the questionnaire, how the team promotes a culture of interprofessional collaborative practice, and the supportive structures that foster collaboration among professionals. PMID:27119406

  3. Understanding the optimal learning environment in palliative care.

    PubMed

    Connell, Shirley E; Yates, Patsy; Barrett, Linda

    2011-07-01

    The learning experiences of student nurses undertaking clinical placement are reported widely, however little is known about the learning experiences of health professionals undertaking continuing professional development (CPD) in a clinical setting, especially in palliative care. The aim of this study, which was conducted as part of the national evaluation of a professional development program involving clinical attachments with palliative care services (The Program of Experience in the Palliative Approach [PEPA]), was to explore factors influencing the learning experiences of participants over time. Thirteen semi-structured, one-to-one telephone interviews were conducted with five participants throughout their PEPA experience. The analysis was informed by the traditions of adult, social and psychological learning theories and relevant literature. The participants' learning was enhanced by engaging interactively with host site staff and patients, and by the validation of their personal and professional life experiences together with the reciprocation of their knowledge with host site staff. Self-directed learning strategies maximised the participants' learning outcomes. Inclusion in team activities aided the participants to feel accepted within the host site. Personal interactions with host site staff and patients shaped this social/cultural environment of the host site. Optimal learning was promoted when participants were actively engaged, felt accepted and supported by, and experienced positive interpersonal interactions with, the host site staff. PMID:20850915

  4. Healthcare professionals' perceptions toward interprofessional collaboration in palliative home care: a view from Belgium.

    PubMed

    Pype, Peter; Symons, Linda; Wens, Johan; Van den Eynden, Bart; Stess, Ann; Cherry, Gemma; Deveugele, Myriam

    2013-07-01

    There is a growing need for palliative care, with the majority of palliative patients preferring palliative home care from their general practitioner (GP). GPs join specialized palliative home care teams (PHCTs) to perform this task. GPs' views on this collaboration are not known. This study explores the perceptions and preferences of GPs toward interprofessional collaboration. By employing a grounded theory approach, five focus groups were conducted in Flanders, Belgium with a total of 29 participants (professionals from PHCTs; professionals from organizations who provide training and education in palliative care and GPs who are not connected to either of the aforementioned groups). Analysis revealed that GPs considered palliative home care as part of their job. Good relationships with patients and families were considered fundamental in the delivery of high quality care. Factors influencing effective interprofessional collaboration were team competences, team arrangements (responsibilities and task description) and communication. GPs' willingness to share responsibilities with equally competent team members requires further research. PMID:23181267

  5. Position Statement: Palliative Care for Children.

    ERIC Educational Resources Information Center

    Death Studies, 1993

    1993-01-01

    Notes that International Work Group on Death, Dying, and Bereavement recognizes wide variation of attitudes, beliefs, and behaviors pertaining to childhood death, dying, and bereavement. Statement identifies set of assumptions which can serve as guidelines, across cultures, in care of children with terminal illness and their families. (Author/NB)

  6. Methods for handling missing data in palliative care research.

    PubMed

    Fielding, S; Fayers, P M; Loge, J H; Jordhøy, M S; Kaasa, S

    2006-12-01

    Missing data is a common problem in palliative care research due to the special characteristics (deteriorating condition, fatigue and cachexia) of the population. Using data from a palliative study, we illustrate the problems that missing data can cause and show some approaches for dealing with it. Reasons for missing data and ways to deal with missing data (including complete case analysis, imputation and modelling procedures) are explored. Possible mechanisms behind the missing data are: missing completely at random, missing at random or missing not at random. In the example study, data are shown to be missing at random. Imputation of missing data is commonly used (including last value carried forward, regression procedures and simple mean). Imputation affects subsequent summary statistics and analyses, and can have a substantial impact on estimated group means and standard deviations. The choice of imputation method should be carried out with caution and the effects reported. PMID:17148533

  7. [Palliative Care for Neurological Intractable Diseases and Home Medical Support].

    PubMed

    Yokoyama, Kazumasa; Ogino, Mieko; Ishigaki, Yasunori; Hattori, Nobutaka

    2015-08-01

    Many medical doctors regard the end stage and palliative care of neurological intractable diseases as the point at which aggressive treatment should be interrupted and death is imminent. However, the definition of health by the World Health Organization as the physical, psychological, and social goal to achieve a fully favorable health condition should be revisited. In the real clinical setting, the health condition, as the ability to adapt and self-manage in the face of social, physical, and emotional challenges with the aim to overcome stress (resilience), is dynamic and involves a healthy condition and satisfaction with one's own living. The most important step in palliative therapy that is shared by neurologists is the maintenance of the health status with the help of multi-disciplinary team with the view to improving the quality of life. PMID:26241362

  8. 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

  9. The development of a palliative care program for managed care patients: a case example.

    PubMed

    Gazelle, G; Buxbaum, R; Daniels, E

    2001-09-01

    Palliative care is emerging as an important new field. Although programs are developing in hospital environments, little is known about development of programs in outpatient practices or those serving large managed care populations. This article provides a framework for the development of a comprehensive palliative care program in a large multispecialty group practice that serves managed care patients. The article addresses guiding principles, the need for obtaining baseline data, how the clinical consultation service was established, development of outcomes measures, and information on current program status. Five themes emerged as key to successful program development, most importantly the close collaboration between administrative and clinical staff in all aspects of program development. PMID:11559386

  10. Early palliative care and metastatic non-small cell lung cancer: potential mechanisms of prolonged survival.

    PubMed

    Irwin, Kelly E; Greer, Joseph A; Khatib, Jude; Temel, Jennifer S; Pirl, William F

    2013-02-01

    Patients with advanced cancer experience a significant burden of physical symptoms and psychological distress at the end of life, and many elect to receive aggressive cancer-directed therapy. The goal of palliative care is to relieve suffering and promote quality of life (QOL) for patients and families. Traditionally, both the public and medical community have conceptualized the need for patients to make a choice between pursuing curative therapy or receiving palliative care. However, practice guidelines from the World Health Organization and leadership from the oncology and palliative care communities advocate a different model of palliative care that is introduced from the point of diagnosis of life-threatening illness. Early palliative care has been shown to provide benefits in QOL, mood, and health care utilization. Additionally, preliminary research has suggested that in contrast to fears about palliative care hastening death, referral to palliative care earlier in the course of illness may have the potential to lengthen survival, particularly in patients with advanced nonsmall-cell lung cancer. This review summarizes the literature on potential survival benefits of palliative care and presents a model of how early integrated palliative care could potentially influence survival in patients with advanced cancer. PMID:23355404

  11. Communications by professionals in palliative care.

    PubMed

    Schapira, Lidia

    2015-05-01

    In this article, the author first examines the ageist bias that is prevalent in clinics today. The author then reviews the basic communication principles and strategies that can help clinicians make their conversations with patients more focused and meaningful, thereby preparing patients and their family caregivers to make decisions in a crisis and to engage in planning for end-of-life care as early and intensively as possible. PMID:25920058

  12. Establishing Palliative Care across the AKDN Health Services: Opportunities and Challenges.

    PubMed

    Hasham, Salim; Shah, Sameena; Khymani, Laila; Makumi, David; Khan, Zeenat Sulaiman

    2015-01-01

    AKDN has one of the most comprehensive private not-for-profit health care systems in the developing world. It has state-of-the-art urban academic tertiary care centers, service hospitals and community based primary care centers spread across the most remote areas of Central and South Asia and East Africa. In response to a global initiative to make palliative care widely available, the AKDN is spearheading the integration of palliative care across its international health network. The scope includes specialist palliative care services in urban tertiary care centers across secondary and outreach programs to home based palliative care services. The ultimate goal is to develop a comprehensive structure of palliative care services which, in addition tofulfilling the vision of quality, also fulfills the needs of the communities that it serves. This article describes the international undertaking; its challenges and the key contextual design principles of the implementation. PMID:26867343

  13. 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. PMID:27349847

  14. Using Technology to Create a More Humanistic Approach to Integrating Palliative Care into the Intensive Care Unit.

    PubMed

    Cox, Christopher E; Curtis, J Randall

    2016-02-01

    A decade ago, the major obstacles to integration of palliative care into the intensive care unit (ICU) were the limited number of providers trained in palliative care, an immature evidence base, and a lack of appreciation for the importance of palliative care in the ICU. In 2016, the palliative care workforce has expanded markedly and there is growing appreciation of the benefits of palliative care, whether provided by a generalist (intensivist, nurse, social worker) or palliative care specialist. However, there is evidence that the quality of ICU-based palliative care is often suboptimal. A major barrier to more broadly addressing this quality problem is the lack of scalable ICU-based palliative care models that use technology to deliver efficient, collaborative palliative care in the ICU setting to the right patient at the right time. To address these challenges, we first review strengths and limitations of current care models as the basis for our novel conceptual framework that uses the electronic health record as a platform on which external innovations can be built, including: (1) screening for patients at risk for poor outcomes, (2) integrating patient- and family-reported needs, (3) personalizing care, and (4) directing generalist versus specialist triage algorithms. In the approaches considered, we describe current challenges and propose specific solutions that use technology to improve the quality of the human interaction in a stressful, complex environment. PMID:26599829

  15. The unmet palliative care needs of those dying with dementia.

    PubMed

    Dempsey, Laura; Dowling, Maura; Larkin, Philip; Murphy, Kathy

    2015-03-01

    An estimated 33.9 million people are living with dementia worldwide. The overall estimated median survival time from onset of dementia to death is 4.1 years for men and 4.6 years for women, with longer survival times in those with early-onset dementia. Much has been discussed about the needs of this vulnerable group of people particularly in terms of their health-care and end-of-life care (EoLC) needs. However, the literature suggests that people with end-stage dementia are still not receiving adequate or appropriate EoLC. Difficulty diagnosing dementia, a stigma surrounding the disease, lack of education of the dementia disease process and the ability to identify complications encountered at end-stage dementia by health-care providers, families and carers are some of the factors preventing those with dementia receiving effective EoLC. Great strides have been made to improve dementia palliative care; however, this cohort of patients still receive fewer referrals to appropriate palliative care services than other terminally ill patients. PMID:25815761

  16. Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale

    PubMed Central

    Schildmann, Eva K; Groeneveld, E Iris; Denzel, Johannes; Brown, Alice; Bernhardt, Florian; Bailey, Katharine; Guo, Ping; Ramsenthaler, Christina; Lovell, Natasha; Higginson, Irene J; Bausewein, Claudia; Murtagh, Fliss EM

    2015-01-01

    Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined

  17. Palliative Care Education in Nurse Practitioner Programs: A Survey of Academic Deans.

    PubMed

    Jensen-Seaman, Kari; Hebert, Randy S

    2016-01-01

    The need for clinicians trained in palliative care will increase as more Americans live with life-limiting illness. Although multiple studies have described the nature of palliative care education in prelicensure programs, there have been no similar studies of nurse practitioner programs. We surveyed 101 nurse practitioner programs. Most programs provide little instruction in palliative care; education is often limited to a few hours of lecture. One-third of programs offer no instruction. Although palliative care is an important component of advanced practice nursing practice, programs may not be providing adequate education. PMID:26862687

  18. Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care.

    PubMed

    Johnstone, Megan-Jane

    2012-12-01

    In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care. PMID:22771130

  19. Palliative care for patients with end-stage renal failure: reflections from Central Australia.

    PubMed

    Fried, Ofra

    2003-09-01

    This paper explores palliative care issues for Australian Aboriginal patients with end-stage renal failure. Renal disease is epidemic amongst Aboriginal Australians. The Central Australian Palliative Care Service, based in the remote town of Alice Springs, sees a high proportion of renal patients, with different demographic characteristics to those seen in urban palliative care services. A case history illustrates distinctive concerns for local service provision, including communication issues, cultural requirements for maximizing quality of life, and the need to provide care in remote locations. Palliation for end-stage renal failure (ESRF) patients should be based on standard principles, but modified in accordance with local practical requirements and community needs. PMID:14526885

  20. Quality of death: a dimensional analysis of palliative care in the nursing home.

    PubMed

    Trotta, Rebecca L

    2007-10-01

    Palliative care in nursing homes is increasingly discussed, investigated, and implemented, yet the term lacks conceptual clarity and definition. Furthermore, the components, process, and outcomes of palliative care as it is delivered in the nursing home have not been clearly articulated. This paper provides a dimensional analysis of palliative care in the nursing home to elucidate the concept and its context and consequences, as portrayed through available literature. As a method, dimensional analysis is rooted in symbolic interaction and grounded theory. As such, it provides a useful tool with which to analyze existing literature on palliative care in the nursing home. In this dimensional analysis, communication is the dominant perspective of palliative care in the nursing home. This analysis demonstrates that the consequences of palliative care in the nursing home are personhood and identity, and quality of death rather than quality of life. These consequences suggest that the focus of palliative care should be on the nursing home resident and the dying experience, rather than quality of life and issues around living that exclude the dying experience and do not acknowledge the personhood and identity of the resident. These elements represent a shift in focus away from one that does not include death, toward the dying experience, and that such a change in focus is necessary to achieve palliative care in the nursing home. Finally, the analysis elucidates potential outcome measures for the study of palliative care in nursing homes and outlines possibilities for further research. PMID:17985968

  1. Clinical aspects of palliative care in advanced Parkinson’s disease

    PubMed Central

    2012-01-01

    Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients. PMID:23098090

  2. [When should palliative care for children with life-threatening illnesses begin?].

    PubMed

    Bergsträsser, Eva

    2015-03-11

    Paediatric Palliative Care in Switzerland is still in its infancy. In comparison to palliative care in adults, the knowledge about palliative care in children is limited. To facilitate the decision of when to start palliative care, an instrument for health professionals has been developed. The instrument, called Paediatric Palliative Screening Scale (PaPaS Scale), builds on five domains shedding light on the child's illness: 1) trajectory of disease and impact on daily activities; 2) treatment options and burden of treatment; 3) symptoms, controllability, and problem burden; 4) preferences of patient or parents; and 5) life expectancy. The aims of a reasonably starting palliative care are quality of life and the ability to actively create the rest of life. PMID:25758969

  3. 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

  4. Family Members Providing Home-Based Palliative Care to Older Adults: The Enactment of Multiple Roles

    ERIC Educational Resources Information Center

    Clemmer, Sarah J.; Ward-Griffin, Catherine; Forbes, Dorothy

    2008-01-01

    Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis…

  5. [Resistance from caregivers and doctors to a transfer to palliative care].

    PubMed

    Azémard, Alain

    2014-04-01

    Doctors' and caregivers' knowledge, acquired experience and representation of death might favour or delay a patient's transfer to a palliative care unit. The mobile palliative care team, witnessing resistance to a transfer, is in a position to respond thanks to the multidisciplinary nature of the team and the trust established between the different players in the patient's care. PMID:24881246

  6. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-26

    ... Care Campaign Pilot Survey Summary: In compliance with the requirement of Section 3506(c)(2)(A) of the.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National Institute of Nursing... developed a Pediatric Palliative Care Campaign to address the communications challenges faced by health...

  7. What is the meaning of palliative care in the Asia-Pacific region?

    PubMed

    O'Connor, Margaret; O'Brien, Anthony Paul; Griffiths, Debra; Poon, Edward; Chin, Jacqueline; Payne, Sheila; Nordin, Rusli

    2010-09-01

    This paper describes the preliminary work required to understand cultural differences in palliative care in the United Kingdom and three countries in the Asia-Pacific region, in preparation for a cross-country study. The study is intended to address cultural understandings of palliative care, the role of the family in end of life care, what constitutes good care and the ethical issues in each country. Suggestions are then made to shape the scope of the study and to be considered as outcomes to improve care of the dying in these countries. It is anticipated that the method used to achieve consensus on cross-country palliative care issues will be both qualitative and quantitative. Identifying key priorities in the delivery and quality measures of palliative care will involve participants in focus groups, a Delphi survey and in the development of clinical indicators towards creating standards of palliative care common to the Asian Pacific region. PMID:20887501

  8. Using social media in supportive and palliative care research.

    PubMed

    Casañas i Comabella, Carolina; Wanat, Marta

    2015-06-01

    Difficulties relating to supportive and palliative care research are often reported. However, studies have highlighted that people near the end of life are happy to participate in research and want their voices heard. Thus, one may raise a twofold question: are we limiting the free will of people who are seriously ill? And are we missing important data, which probably cannot be obtained from other sources? In light of this landscape, a new opportunity has emerged: the use of social media (SM). This paper provides a comprehensive summary of SM, including its theoretical underpinnings, and recent examples of successful uses of SM in healthcare research. It also outlines the opportunities (wider reach, direct access, the potential of Big Data, readiness of research data, empowered participants) and challenges (anonymity of participants, digital divide, sample bias, screening and 'saying no' to participants, data analysis) of using SM in end-of-life care research. Finally, it describes the practical steps that a researcher could follow to recruit patients using SM. Implications for palliative care clinicians, researchers and policymakers are also discussed, with a focus on the need to facilitate patient-centred care through the use of SM. The need for relevant and updated guidelines in this new, emerging field is highlighted. PMID:25311211

  9. Palliative Care teaching in Germany – concepts and future developments

    PubMed Central

    Ilse, B.; Hildebrandt, J.; Posselt, J.; Laske, A.; Dietz, I.; Borasio, G. D.; Kopf, A.; Nauck, F.; Elsner, F.; Wedding, U.; Alt-Epping, Bernd

    2012-01-01

    Background: Following recent modifications of the Medical Licensure Act (ÄApprO) in the year 2009, palliative care was introduced as a compulsory 13th cross-disciplinary subject (Q13) in the undergraduate curriculum. Its implementation must have taken place before the beginning of the final year (´practical year´) in August 2013 and has to be substantiated for the medical exams taking place in October 2014. Very diverse structures pertaining to palliative care teaching were described in previous surveys at various medical faculties in Germany. As a result, the current and future plans and concepts related to content and exams of a mandatory Q13 course at the respective faculty sites should be ascertained. Methods: Since 2006, the German Medical Students' Association (bvmd) has been carrying out a bi-annual survey at all medical faculties in Germany regarding the current situation of teaching in the field of palliative care. After designing and piloting an online survey in May 2010, a one-month online survey took place. The data was assessed using a descriptive approach. Results: 31 of 36 medical faculties took part in the survey. At the time of questioning, 15 faculties already taught courses according to the requirements of the new ÄApprO; at three sites the Q13 is yet to be introduced commencing in 2012. A teaching curriculum for Q13 already existed at 15 faculty sites, partly based on the curricular requirements of the German Association for Palliative Medicine (DGP). Six sites described an implementation process as yet without an independent curriculum. Most of the faculties aim for 21-40 course hours, which will for the most part be provided as lectures, seminars or less often in more assisted and intense formats. The majority of the participating faculties intend an examination containing multiple choice questions. At 8 universities there is an independent Chair for palliative medicine (5 more are planned); this was linked with a higher degree of

  10. Integrating Palliative Care into the Pediatric Intensive Care Unit A Report from the IPAL-ICU (Improving Palliative Care in the ICU) Advisory Board

    PubMed Central

    Boss, Renee; Nelson, Judith; Weissman, David; Campbell, Margaret; Curtis, Randall; Frontera, Jennifer; Gabriel, Michelle; Lustbader, Dana; Mosenthal, Anne; Mulkerin, Colleen; Puntillo, Kathleen; Ray, Daniel; Bassett, Rick; Brasel, Karen; Hays, Ross

    2014-01-01

    Objective This review highlights the benefits that patients, families and clinicians can expect to realize when palliative care service is intentionally incorporated into the PICU, focusing on pain and symptom management, enhancing quality of life, communication and decision-making, length of stay and sites of care, and grief and bereavement. Data Sources MEDLINE Data Synthesis and Conclusions The American Academy of Pediatrics suggests that palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions. PMID:25080152

  11. Effectively using communication to enhance the provision of pediatric palliative care in an acute care setting

    PubMed Central

    Hubble, Rosemary; Trowbridge, Kelly; Hubbard, Claudia; Ahsens, Leslie; Ward-Smith, Peggy

    2008-01-01

    The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use of a communication tool provides documentation for conversations, treatment plans, and specific desires related to care. This paper describes communication theory, portrays the use of this theory to develop a communication tool, and illustrates the use of this tool by multidisciplinary members of a healthcare team to provide pediatric palliative care. PMID:21197332

  12. Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board.

    PubMed

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

    2015-02-01

    Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

  13. Clinician Roles in Early Integrated Palliative Care for Patients with Advanced Cancer: A Qualitative Study

    PubMed Central

    Park, Elyse R.; Greer, Joseph A.; Jackson, Vicki A.; Jacobsen, Juliet C.; Gallagher, Emily R.; Temel, Jennifer S.

    2014-01-01

    Abstract Background: Early palliative care provides better quality of life, increased prognostic awareness, and even improved survival for patients with advanced cancer but how the integrated care model achieves these outcomes has not been completely explained. Methods: To better understand the clinical approach to early outpatient care from the clinicians' perspective, we conducted focus groups with the palliative care clinicians who had participated in a randomized trial of early palliative care for metastatic lung cancer. Results: Clinicians described their role in providing early palliative care as having three distinct roles in the outpatient setting: (1) managing symptoms to improve functional status and as a bridge to other issues; (2) engaging patients in emotional work to facilitate coping, accepting, and planning; and (3) interpreting the oncologist for the patient and the patient for the oncologist. Conclusions: These data lay the foundation for developing training programs for clinicians in early integrated palliative care. PMID:25390467

  14. Day Care and the Schools.

    ERIC Educational Resources Information Center

    Caldwell, Bettye M.

    1981-01-01

    Although it has always been considered the "poor relation" of early childhood education, day care in the public schools is the most effective way of establishing a continuity between the preschool and the elementary school. The Kramer Model of "extended day school" is a cooperative venture between a college and a public school. (JN)

  15. Pilot Testing of Triage Coding System in Home-based Palliative Care Using Edmonton Symptom Assessment Scale

    PubMed Central

    Dhiliwal, Sunil; Salins, Naveen; Deodhar, Jayitha; Rao, Raghavendra; Muckaden, Mary Ann

    2016-01-01

    Introduction: Home-based palliative care is an essential model of palliative care that aims to provide continuity of care at patient's own home in an effective and timely manner. This study was a pilot test of triage coding system in home-based palliative care using Edmonton Symptom Assessment System (ESAS) scale. Methods: Objective of the study was to evaluate if the triage coding system in home-based palliative care: (a) Facilitated timely intervention, (b) improved symptom control, and (c) avoided hospital deaths. Homecare services were coded as high (Group 1 - ESAS scores ≥7), medium (Group 2 - ESAS scores 4–6), and low (Group 3 - ESAS scores 0–3) priority based on ESAS scores. In high priority group, patients received home visit in 0–3 working days; medium priority group, patients received home visit in 0–10 working days; and low priority group, patients received home visit in 0–15 working days. The triage duration of home visit was arbitrarily decided based on the previous retrospective audit and consensus of the experts involved in prioritization and triaging in home care. Results: “High priority” patients were visited in 2.63 ± 0.75 days; “medium priority” patients were visited in 7.00 ± 1.5 days, and “low priority” patients were visited in 10.54 ± 2.7 days. High and medium priority groups had a statistically significant improvement in most of the ESAS symptoms following palliative home care intervention. Intergroup comparison showed that improvement in symptoms was the highest in high priority group compared to medium and low priority group. There was an 8.5% increase in home and hospice deaths following the introduction of triage coding system. There was a significant decrease in deaths in the hospital in Group 1 (6.3%) (χ2 = 27.3, P < 0.001) compared to Group 2 (28.6%) and Group 3 (15.4%). Group 2 had more hospital deaths. Interval duration from triaging to first intervention was a significant predictor of survival with odds

  16. Interventions geared towards strengthening the health system of Namibia through the integration of palliative care.

    PubMed

    Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia

    2016-01-01

    The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

  17. Interventions geared towards strengthening the health system of Namibia through the integration of palliative care

    PubMed Central

    Freeman, Rachel; Luyirika, Emmanuel BK; Namisango, Eve; Kiyange, Fatia

    2016-01-01

    The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

  18. [Treatment of constipation in palliative care patients is a challenge].

    PubMed

    Jarlbæk, Lene; Johnsen, Berit; Hansen, Ole Bo; Hedal, Birte

    2016-08-15

    The evidence for treatment of constipation in palliative care patients is poor. The condition of these patients is often complex, and results from studies performed in other patient groups cannot be extrapolated unconditionally. However, macrogol (polyethylene glycol), lactulose and sodium picosulphate seem to be well tolerated, and methylnaltrexone could be used in opioid-induced constipation, if the patients are not at risk from gastrointestinal perforation. The patients should be offered quiet and private surroundings, and attention should be payed to securing an optimal body position for defecation. PMID:27550785

  19. Narrative palliative care: a method for building empathy.

    PubMed

    Stanley, Patricia; Hurst, Marsha

    2011-01-01

    We make meaning of illness, suffering, and death through narrative, by telling a story. In this article, the authors explore narrative and palliative care: how, at the end of life, narratives of patients, caregivers, and clinicians serve to connect to those still living, and how through each telling and listening, we honor and validate the experience of suffering. A discussion of narrative competence and the skills of attention, representation, and affiliation is followed by an outline of the format for a narrative medicine workshop and a detailed analysis of an experiential exercise in close reading and reflective writing. PMID:21391077

  20. The Spirit of "Ubuntu" in Children's Palliative Care.

    PubMed

    Marston, Joan M

    2015-09-01

    The concept of "ubuntu," a Nguni word, is found in many southern African cultures and means that we are part of all humanity and we are who we are through our interconnectedness with others. Children with life-limiting conditions often become isolated and take on a new identity in the eyes of others, linked to their illness and treatment. Terms that are used can dehumanize the child. The concept of ubuntu can help the child, the family, and the community to ensure the child remains connected to society. Programs providing palliative care for children often say they feel isolated; ubuntu principles are relevant to effective network development. PMID:26166185

  1. [Demoralization: introducing the concept and its importance for palliative care].

    PubMed

    Barbosa, Miguel; Moutinho, Susana; Gonçalves, Edna

    2011-12-01

    Demoralization refers to a persistent failure of coping with stress as defined by Jerome Frank thirty years ago. Feelings of despair, isolation, hopelessness, loss of meaning and existential distress are the core features of the definition of demoralization. It is frequently associated with a chronic medical illness, fear of loss of dignity and perception of being a burden on others and it evolves to a desire to die. The authors reviewed the literature related to this concept and present the evidence related to the diagnosis, classification, treatment and relation of demoralization with the palliative care setting. PMID:22863484

  2. [Drugs administration by subcutaneous injection within palliative care].

    PubMed

    Tanguy-Goarin, Charlotte; Cogulet, Virginie

    2010-01-01

    Drugs delivery by subcutaneous injection is often the last resort/appeal for a doctor anxious to limit the aggressive and invasive treatments, particularly within palliative care. A review was made to list the drugs which can be administered by this route. Concerned antibiotics are teicoplanin, netilmicin and gentamicin with a risk of skin necrosis for aminoglycosids. Midazolam is useful in various indications and can be associated with morphine in case of dyspnoea. Data about subcutaneous injection of dexamethasone, clonazepam, haloperidol and levomepromazine are published; it is the same for fentanyl, nefopam, ondansetron and metoclopramide. The subcutaneous injection of these quoted drugs is possible, but requires further studies. PMID:21176759

  3. Victoria BGY palliative care model--a new model for the 1990s.

    PubMed

    Downing, G M; Braithwaite, D L; Wilde, J M

    1993-01-01

    If, as palliative care practitioners, we ensure that distressing symptoms such as pain, vomiting, dyspnea, confusion, and pre-death restlessness are fully controlled (note "fully"), then most people are deeply appreciative and continue to live until they die, confident that whatever happens, their worth, desires, and comfort are secure. Credibility (Latin, fides dignus) is remaining true and reliable to what was agreed. Patients registering with palliative care generally desire comfort, which can only occur when palliative care physicians and programs are capable and willing to apply all three types of palliation discussed here--the BGY model. PMID:7510798

  4. The Growth of Palliative Care in U.S. Hospitals: A Status Report

    PubMed Central

    Dumanovsky, Tamara; Augustin, Rachel; Rogers, Maggie; Lettang, Katrina; Meier, Diane E.

    2016-01-01

    Abstract Background: Palliative care is expanding rapidly in the United States. Objective: To examine variation in access to hospital palliative care. Methods: Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. Results: Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. Conclusions: This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership. PMID:26417923

  5. Palliative Care for Patients with Dementia: A National Survey

    PubMed Central

    Torke, Alexia M.; Holtz, Laura R.; Hui, Siu; Castelluccio, Peter; Connor, Stephen; Eaton, Matthew A.; Sachs, Greg A.

    2011-01-01

    OBJECTIVES To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN Telephone and Web-based surveys. SETTING U.S. hospice and PC programs from the National Hospice and Palliative Care Organization’s program list. PARTICIPANTS Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care. CONCLUSION Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible. PMID:21054292

  6. Implementing a Palliative Care Nurse Leadership Fellowship Program in Uganda.

    PubMed

    Downing, Julia; Leng, Mhoira; Grant, Liz

    2016-05-01

    Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great.
. PMID:27105201

  7. Management of Hemichorea Hemiballismus Syndrome in an Acute Palliative Care Setting

    PubMed Central

    Damani, Anuja; Ghoshal, Arunangshu; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann

    2015-01-01

    Hemichorea hemiballismus (HCHB) is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC) approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes. PMID:25709190

  8. Management of hemichorea hemiballismus syndrome in an acute palliative care setting.

    PubMed

    Damani, Anuja; Ghoshal, Arunangshu; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann

    2015-01-01

    Hemichorea hemiballismus (HCHB) is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC) approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes. PMID:25709190

  9. Outpatient palliative care effectiveness: both patients and caregivers can gain.

    PubMed

    Antoniu, Sabina

    2013-10-01

    Outpatient palliative care services are increasing in their effectiveness worldwide, because they can better focus on both patients' and caregivers' needs at all stages of the disease requiring this type of interventions. This was demonstrated before by various studies that,however, were performed mostly on patients with malignancies and thatyielded encouraging results about the severity of the symptoms and about the burden of care in the caregivers. In this analysis performed on a mixture of patients with malignant and nonmalignant diseases, Groh et al. demonstrate that the outpatient team intervention was able to reduce the severity of symptoms such as pain or digestive symptoms and were able to minimize the burden of care of the primary caregivers. PMID:24138644

  10. Pretransplantation Supportive and Palliative Care Consultation for High-Risk Hematopoietic Cell Transplantation Patients.

    PubMed

    Loggers, Elizabeth T; LeBlanc, Thomas W; El-Jawahri, Areej; Fihn, Judy; Bumpus, Molly; David, Jodie; Horak, Petr; Lee, Stephanie J

    2016-07-01

    Early palliative care (EPC) for patients with metastatic solid tumors is now standard of care, but the effect of EPC in hematopoietic cell transplantation (HCT) is less well understood. We studied the acceptability of pre-HCT EPC as measured by trial participation, changes in patient-reported outcomes, and follow-up with palliative care providers. English-speaking adults (age >17 years) with an HCT comorbidity index of ≥ 3, relapse risk > 25%, or planned HLA-mismatched allogeneic or myeloablative HCT received EPC before HCT admission with monthly or more frequent visits. Twenty-two (69%) of 32 subjects provided consent; 2 were later excluded (HCT cancelled, consent retracted) for a 63% participation rate. Comfort with EPC was high (82% very comfortable). Subjects reported stable or improved mood and sense of hope, without apparent negative effects with a median of 3 visits. Follow-up surveys were returned by 75% of participants at 60 days and by 65% at 90 days. Four (20%) were admitted to the intensive care unit before day 100 and 3 (15%) received life-support measures. Five (25%) died with median follow-up of 14 months. EPC is feasible, acceptable, and has the potential to improve the HCT experience, whether or not the patient survives. EPC for HCT patients should be tested in a randomized trial. PMID:26976242

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

    MedlinePlus

    ... Palliative Care Palliative Care: Increasing the quality of life for patients and families… Past Issues / Spring 2014 ... comfortable as possible and improve your quality of life. You don't have to be in hospice ...

  12. 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

  13. The perspectives on including palliative care in the Indian undergraduate physiotherapy curriculum.

    PubMed

    Veqar, Zubia

    2013-04-01

    According to the guidelines which were published by WHO in 2008, palliative care has been defined as "An approach that improves the quality of life of the patients and their families who face the problems which are associated with life-threatening illnesses, through the prevention and relief of suffering by means of an early identification, an impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual". The intervention which is provided as a part of the palliative care has to be provided by health professionals who strictly work as a part of multidisciplinary team and have been specifically trained to an optimal level of competency in the field. The impairment of the physical function and pain are two key problem areas in palliative care, which a physiotherapist deals with. Is a physiotherapist who is trained in India, trained to work as an efficient member of the team in this field? THIS ARTICLE DEALS WITH THE FOLLOWING: What is palliative care and what is its importance?A multidisciplinary approach to palliative careThe scenario of palliative care in IndiaThe role of physiotherapy in palliative care.The current scenario of physiotherapy education vis a vis palliative care. PMID:23730677

  14. The Quality of Life of Palliative Care Staff: A Personal Construct Approach.

    ERIC Educational Resources Information Center

    Viney, Linda L.; And Others

    1994-01-01

    Compared palliative care staff with staff from burn and neonatal units and with mature age general nursing trainees at end of training. Found that palliative care staff expressed better quality of life, in terms of significantly less anxiety and depression, as well as more good feelings than other staff groups. (Author/NB)

  15. Suicide Prevention: Efforts To Increase Research and Education in Palliative Care. Report to Congressional Requesters.

    ERIC Educational Resources Information Center

    General Accounting Office, Washington, DC. Health, Education, and Human Services Div.

    Currently, the extent of palliative care instruction varies considerably across and within the three major phases of the physician education and training process. This analysis of current educational efforts in palliative care is based on information obtained from a survey conducted of all United States medical schools, surveys conducted on United…

  16. Sexuality and Life-Threatening Illness: Implications for Social Work and Palliative Care

    ERIC Educational Resources Information Center

    Cagle, John G.; Bolte, Sage

    2009-01-01

    Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…

  17. Palliative Care Education: Focusing on Care and Not Just Disease | Division of Cancer Prevention

    Cancer.gov

    At the Institute for Palliative Medicine (IPM) in San Diego, medical residents are re-tooling for one of the most essential aspects of medicine: caring for seriously ill patients. “The goal is to teach them the core competencies in palliative care,” explained Dr. Charles von Gunten, the institute’s provost. These competencies include pain management, good communication skills, and the ability to provide patients with psychosocial and spiritual assessments and to work in interdisciplinary teams in hospitals, as well as through hospice and in nursing homes, he said. |

  18. Pediatric palliative care and pediatric medical ethics: opportunities and challenges.

    PubMed

    Feudtner, Chris; Nathanson, Pamela G

    2014-02-01

    The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions. PMID:24488535

  19. Challenges to and Lessons Learned from Conducting Palliative Care Research

    PubMed Central

    O’Mara, Ann M.; St. Germain, Diane; Ferrell, Betty; Bornemann, Tami

    2008-01-01

    In response to a 2005 NIH solicitation, sixteen investigators received funding to test interventions that would reduce the barriers that prevent cancer patients from receiving adequate and appropriate symptom management therapies. Since the awards have been issued, the investigators have met two times and have identified a number of challenges to implementing their respective studies. A survey was conducted that focused on their experiences with hiring and retaining study personnel, gaining Institutional Review Board (IRB) approval, incurring unexpected costs, challenges to accruing participants, and a listing of standard measures used in the study. The survey was completed online by the Principal Investigator (PI) for each project in late 2006 and the initial results were confirmed one year later by resending the initial survey and by a follow up phone call. All but one PI completed the survey. Obtaining Institutional Review Board (IRB) approval, hiring and recruiting research personnel, establishing subcontracts and accruing research subjects were the primary challenges experienced by the investigators. This palliative care solicitation achieved more than its original intent of stimulating research in overcoming barriers to delivering cancer symptom management, palliative and end-of-life care. From a survey on the challenges and issues that emerged from their projects, grantees were able to identify specific hurdles and their unique solutions that may help other investigators as they plan their program of research. PMID:18715749

  20. The power of integration: radiotherapy and global palliative care.

    PubMed

    Rodin, Danielle; Grover, Surbhi; Elmore, Shekinah N; Knaul, Felicia M; Atun, Rifat; Caulley, Lisa; Herrera, Cristian A; Jones, Joshua A; Price, Aryeh J; Munshi, Anusheel; Gandhi, Ajeet K; Shah, Chiman; Gospodarowicz, Mary

    2016-07-01

    Radiotherapy (RT) is a powerful tool for the palliation of the symptoms of advanced cancer, although access to it is limited or absent in many low- and middle-income countries (LMICs). There are multiple factors contributing to this, including assumptions about the economic feasibility of RT in LMICs, the logical challenges of building capacity to deliver it in those regions, and the lack of political support to drive change of this kind. It is encouraging that the problem of RT access has begun to be included in the global discourse on cancer control and that palliative care and RT have been incorporated into national cancer control plans in some LMICs. Further, RT twinning programs involving high- and low-resource settings have been established to improve knowledge transfer and exchange. However, without large-scale action, the consequences of limited access to RT in LMICs will become dire. The number of new cancer cases around the world is expected to double by 2030, with twice as many deaths occurring in LMICs as in high-income countries (HICs). A sustained and coordinated effort involving research, education, and advocacy is required to engage global institutions, universities, health care providers, policymakers, and private industry in the urgent need to build RT capacity and delivery in LMICs. PMID:27481320

  1. [Perinatal palliative care in France: Who? Why? How?].

    PubMed

    Tosello, B

    2016-09-01

    Severe congenital or morphologic anomalies are one of the main causes of infant morbidity and mortality. Some of these prenatally-diagnosed pathologies are incompatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. At international level, this is a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant). It might be necessary to identify the factors that can affect these ethical tensions. With no national data, we explored the perceptions and professional practices that may influence parental requests for continuing with pregnancy, despite the uncertainty corresponding to the postnatal condition of a newborn with a lethal pathology. This exploration aims to question and debate current norms, especially in medical termination of pregnancy, discussing the dilemmas and divergences that affect decision-making and professional practices in neonatal palliative care. Reflection is also necessary on how to find an answer that can make sense within a request for continuation of pregnancy, despite the uncertainty inherent in the postnatal period in case of live birth of a newborn with a lethal abnormality. PMID:27472997

  2. Are special ethical guidelines needed for palliative care research?

    PubMed

    Casarett, D J; Karlawish, J H

    2000-08-01

    Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in research may make many providers uncomfortable. In short, there seems to be something ethically unique, and uniquely challenging, about palliative care research. This paper considers 4 arguments for this unique status: 1) dying patients are especially vulnerable; 2) adequate informed consent may be difficult to obtain; 3) balancing research and clinical roles is particularly difficult; and 4) the risks and benefits of palliative research are difficult to assess. We conclude that the first three of these arguments are weak, and that special guidelines are not needed. We suggest, however, that the fourth argument may have some merit, and should be the focus of discussion among investigators, providers, and patients. PMID:10989251

  3. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care

    PubMed Central

    Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2015-01-01

    The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested. PMID:25628769

  4. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

    PubMed

    Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2014-01-01

    The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested. PMID:25628769

  5. Chronic pain management as a barrier to pediatric palliative care.

    PubMed

    Thompson, Lindsay A; Meinert, Elizabeth; Baker, Kimberly; Knapp, Caprice

    2013-12-01

    Pain is common as a presenting complaint to outpatient and emergency departments for children, yet pain management represents one of the children's largest unmet needs. A child may present with acute pain for an intermittent issue or may have acute or chronic pain in the setting of chronic illness. The mainstay of treatment for pain uses a stepwise approach for pain management, such as set up by the World Health Organization. For children with life-limiting illnesses, the Institute of Medicine guidelines recommends referral upon diagnosis for palliative care, meaning that the child receives comprehensive services that include pain control in coordination with curative therapies; yet barriers remain. From the provider perspective, pain can be better addressed through a careful assessment of one's own knowledge, skills, and attitudes. The key components of pain management in children are multimodal, regardless of the cause of the pain. PMID:23329083

  6. Access to palliative care: insights into ground realities post-2014 amendment to NDPS Act.

    PubMed

    Rajagopal, M R

    2016-01-01

    Medical practice today is disease-focused, ignoring the universally accepted definition of health as not just the absence of disease, but the promotion of complete physical, social and mental well-being. Generations of doctors in India have not studied modern pain management, and palliative care is practically unknown in most parts of the country, causing patients to be rejected by hospitals and doctors when they need help the most. The draconian Narcotic Drugs and Psychotropic Substances (NDPS) Act of 1985, outdated medical and nursing education, lack of public awareness and lack of clear governmental policy are responsible for this sorry state of affairs. The development of a community-oriented palliative care network eventually led to the formulation of a state palliative care policy in Kerala. The acceptance of palliative care as a medical specialty by the Medical Council of India and introduction of a postgraduate degree course in palliative medicine in 2010, the development of a National Programme for Palliative Care in 2012 by the Ministry of Health of the Government of India, and the amendment of the NDPS Act in 2014 have been major positive developments which have the potential to change the current state of affairs. However, these recent achievements represent but one step in the right direction. An improvement in palliative care education, a realistic palliative care policy and implementation of the NDPS Amendment Act are necessary for doing away with the gross, needless violation of the human right to life with dignity. PMID:26826658

  7. 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

  8. 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. PMID:26769116

  9. Child Development: Day Care. Administration, Number 7.

    ERIC Educational Resources Information Center

    Host, Malcolm S.; Heller, Pearl B.

    The organizing and administering of day care services are the focus of this handbook. The three parts of the handbook are: (1) Organizing Day Care Services (Starting a Day Care Program, The Board of Directors, and The Staff); (2) Components of Day Care Services (Purpose, Objectives and Evaluation of Day Care Programs; Health and Medical Program;…

  10. Chinese Herbal Medicine for Symptom Management in Cancer Palliative Care

    PubMed Central

    Chung, Vincent C.H.; Wu, Xinyin; Lu, Ping; Hui, Edwin P.; Zhang, Yan; Zhang, Anthony L.; Lau, Alexander Y.L.; Zhao, Junkai; Fan, Min; Ziea, Eric T.C.; Ng, Bacon F.L.; Wong, Samuel Y.S.; Wu, Justin C.Y.

    2016-01-01

    Abstract Use of Chinese herbal medicines (CHM) in symptom management for cancer palliative care is very common in Chinese populations but clinical evidence on their effectiveness is yet to be synthesized. To conduct a systematic review with meta-analysis to summarize results from CHM randomized controlled trials (RCTs) focusing on symptoms that are undertreated in conventional cancer palliative care. Five international and 3 Chinese databases were searched. RCTs evaluating CHM, either in combination with conventional treatments or used alone, in managing cancer-related symptoms were considered eligible. Effectiveness was quantified by using weighted mean difference (WMD) using random effect model meta-analysis. Fourteen RCTs were included. Compared with conventional intervention alone, meta-analysis showed that combined CHM and conventional treatment significantly reduced pain (3 studies, pooled WMD: −0.90, 95% CI: −1.69 to −0.11). Six trials comparing CHM with conventional medications demonstrated similar effect in reducing constipation. One RCT showed significant positive effect of CHM plus chemotherapy for managing fatigue, but not in the remaining 3 RCTs. The additional use of CHM to chemotherapy does not improve anorexia when compared to chemotherapy alone, but the result was concluded from 2 small trials only. Adverse events were infrequent and mild. CHM may be considered as an add-on to conventional care in the management of pain in cancer patients. CHM could also be considered as an alternative to conventional care for reducing constipation. Evidence on the use of CHM for treating anorexia and fatigue in cancer patients is uncertain, warranting further research. PMID:26886628

  11. Infectious Diseases in Day Care.

    ERIC Educational Resources Information Center

    Sleator, Esther K.

    Discussed in this publication are infectious illnesses for which children attending day care appear to be at special risk. Also covered are the common cold, some infectious disease problems receiving media attention, and some other annoying but not serious diseases, such as head lice, pinworms, and contagious skin conditions. Causes,…

  12. Day Care Management. Final Report.

    ERIC Educational Resources Information Center

    Bourque, Janet

    A curriculum was developed and a pilot project was conducted to train 20 day care center directors at Lake Washington Vocational Technical Institute. This document summarizes the curriculum development project and provides the curriculum that was developed. The report contains a summary and outline of the course, a skills assessment, pretests and…

  13. Palliative Care: The Relief You Need When You're Experiencing Symptoms of Serious Illness

    MedlinePlus

    ... and can leave you lacking the energy or motivation to pursue the things you enjoy. They also ... palliative care team and your health care provider work together. Most clinicians appreciate the extra time and ...

  14. 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

  15. Palliative care in neonatal neurology: robust support for infants, families and clinicians.

    PubMed

    Lemmon, M E; Bidegain, M; Boss, R D

    2016-05-01

    Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families. PMID:26658120

  16. Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care

    PubMed Central

    Downing, J; Marston, J; Muckaden, MA; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P

    2014-01-01

    The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children

  17. Comparison of metal versus Vialon subcutaneous catheters in a palliative care setting.

    PubMed

    Currow, D; Cooney, N

    1994-10-01

    In 63 evaluable palliative care patients requiring intermittent bolus subcutaneous administration of medication, who were randomly assigned either a standard metal subcutaneous needle or a PTFE (Vialon) catheter, there was a significantly greater incidence of local reactions at the insertion site with the metal needles (9/30) compared with the PTFE catheters (2/33). Despite this, there was no significant difference between the two in functional survival. Volume of medication injected per day was the best predictor of total time that the subcutaneous lines remained in situ. PMID:7812483

  18. Palliative care communication curriculum: what can students learn from an unfolding case?

    PubMed

    Goldsmith, Joy; Wittenberg-Lyles, Elaine; Shaunfield, Sara; Sanchez-Reilly, Sandra

    2011-06-01

    Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs. PMID:21071434

  19. The challenge of providing palliative care to terminally ill prison inmates in the UK.

    PubMed

    Wood, Felicity Juliette

    2007-03-01

    Terminally ill prison inmates have a right to all aspects of health care including palliative care provision. However, there are numerous difficulties in providing palliative care to high-security prisoners in the UK. Local community hospices may be reluctant to admit terminally ill prisoners and therefore initiatives must be established to provide appropriate palliative care within the prison itself. Dying prisoners need companionship and to be shown respect and compassion to avoid feelings of loneliness and hopelessness. Inmate volunteers can provide an invaluable source of support and friendship for the terminally ill prisoner, helping to improve quality of life. PMID:17505406

  20. Self-determination: analysis of the concept and implications for research in palliative care.

    PubMed

    Bakitas, Marie A

    2005-06-01

    This paper analyzes the evolution and the definition, current use, and application of the concept of self-determination in palliative care research and practice. Undertaken as a foundation for the development of a palliative care research program, the analysis considers selected historical, bioethical, legal, clinical, and relevant medical and nursing health-care literature on adults with chronic and terminal illness. Based on a synthesis of the literature, a conceptual definition is proposed and ways of integrating the concept of self-determination into palliative care intervention research are identified. PMID:16092777

  1. Pain Management and Symptom-Oriented Drug Therapy in Palliative Care

    PubMed Central

    Klein, Carsten; Lang, Ute; Bükki, Johannes; Sittl, Reinhard; Ostgathe, Christoph

    2011-01-01

    Summary Patients with advanced life-limiting disease often suffer from symptoms that considerably impair their quality of life and that of their families. Palliative care aims to alleviate these symptoms by a multidimensional approach. Pharmacotherapy is an essential component. The objective of this review is to give an overview of symptom-oriented drug therapy for the most important symptoms in palliative care. Leading symptoms that affect quality of life include pain, dyspnea, nausea and emesis, weakness and disorientation. Careful examination and history taking help to understand the individual mechanisms underlying these symptoms. Specific pharmacotherapy provides an efficient way to achieve symptom control in the context of palliative care. PMID:21547023

  2. Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit

    PubMed Central

    Ghoshal, Arunangshu; Salins, Naveen; Damani, Anuja; Deodhar, Jayita; Muckaden, MaryAnn

    2016-01-01

    Purpose: To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services. Patients and Methods: Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from January 1, 2010 to December 31, 2014. Descriptive summaries of demographic, clinical variables, and patient circumstances at the time of referral and during end-of-life care were examined. Results: A total of 1135 patients were referred from pediatric oncology with a gradual increasing trend over 5 years. About 84.6% consultations took place in the outpatient setting. In 97.9% of the cases, parents were the primary caregivers. Availability of specialist pediatric health-care services at local places was available in 21.2% cases and 48% families earned <5000 INR (approximately 73 USD) in a month. Around 28.3% of the referrals were from leukemia clinic and maximum references were late with 72.4% patients having advanced disease at presentation. 30.3% of the referrals were made for counseling and communication and 54.2% had high symptom burden during referral. After referral, 21.2% patients continued with oral metronomic chemotherapy and 10.5% were referred back to oncology services for palliative radiotherapy. Only 4.9% patients had more than 2 follow-ups. 90.8% of the patients were cared for at home in the last days of illness by local general practitioners. 70.6% of the deaths were anticipated. Conclusions: Oncologists referred patients late in the course of disease trajectory. Most of the referrals were made for counseling and communication, but many patients had high symptom burden during referral. PMID:27559254

  3. [Hospice palliative care is a universal value and the essence of nursing].

    PubMed

    Chao, Co-Shi Chantal

    2015-04-01

    This article uses four examples to illustrate the recent rise of hospice palliative care as a universal value. These examples include the story of Dame Cecily Saunders, the pioneer of the palliative care movement in the U.K.; the national healthcare plan currently promoted by United States' President Obama; a survey on the topic of quality of death in 40 countries conducted by the Lien Foundation (Singapore); and the story of the Hospice Movement in Taiwan. This article further describes how hospice palliative care has changed the healthcare culture and presents the World Health Organization's definition of palliative care and the implications of this definition. Additionally, this article identifies the common palliative-care mistakes that have been made by the general public and by healthcare workers. Healthcare professionals must acquire essential relevant knowledge and skills in order to ensure that hospice palliative care addresses the needs of terminally ill patients adequately. Finally, the author describes a novel approach to instilling proper palliative-care concepts and practices that is entitled Life, Peace, Care, and Honor (LPCH or the "3344" concept). PMID:25854942

  4. Infomarkers for Transition to Goals Consistent with Palliative Care in Dying Patients

    PubMed Central

    Yao, Yingwei; Stifter, Janet; Ezenwa, Miriam O.; Lodhi, Muhammad; Khokhar, Ashfaq; Ansari, Rashid; Keenan, Gail M.; Wilkie, Diana J.

    2015-01-01

    Objective Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental costs for dying care. Our aim was to identify changes in the plans of care that represented infomarkers, which signaled the transition of care goals from non-palliative care goals to those consistent with palliative care. Methods Using an existing electronic health record database generated during a two-year, longitudinal study of 9 diverse medical-surgical units from 4 Midwest hospitals and a known group approach, we evaluated the patient care episodes for 901 patients who died (mean age=74.5±14.6 years). We used ANOVA and Tukey’s post-hoc tests to compare patient groups. Results We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of non-palliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n=507); infomarkers added on the admission plan (n=194); infomarkers added on a post admission plan (minor transitions, n=109), and infomarkers added and non-palliative care diagnoses removed on a post admission plan (major transition, n=91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients. Significance of Results EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories for to conduct big data research, comparative effectiveness studies, and health services research. PMID:25711431

  5. Palliative Care Caregivers' Grief Mediators: A Prospective Study.

    PubMed

    Coelho, Alexandra M; Delalibera, Mayra A; Barbosa, António

    2016-05-01

    The aim of the study is to identify the mediators of complicated grief in a Portuguese sample of caregivers. Grief mediators were prospectively evaluated using a list of risk factors completed by the palliative care team members, during the predeath and bereavement period. More than 6 months after the death, we applied PG-13 to diagnose prolonged grief disorder (PGD). The sample was composed of 64 family caregivers. Factors associated with PGD were insecure and dependent relationship, unresolved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are relevant, but we must consider the reciprocal influence among factors, as well as their impact on specific symptoms. PMID:25601321

  6. The Integration of Palliative Care into the Emergency Department.

    PubMed

    Basol, Nursah

    2015-06-01

    Palliative care (PC) is a new and developing area. It aims to provide the best possible quality of life for patients with life-limiting diseases. It does not primarily include life-extending therapies, but rather tries to help patients spend the rest of their lives in the best way. PC patients often are admitted to emergency departments during the course of a disease. The approach and management of PC include differences with emergency medicine. Thus, there are some problems while providing PC in the ED. With this article, the definition, main features, benefits, and problems of providing PC are presented, with the primary aim of emphasizing the importance of PC integration into the ED. PMID:27336074

  7. [Anemia caused by cancer in the context of palliative care].

    PubMed

    Altinger, Marion; Strasser, Florian

    2012-01-01

    Tumor anemia is very common in patients with cancer. The causes are very diverse and the parameter value depends on several factors. If this however develops to be symptomatic it may adversely impact health related quality of life. Erythropoietin or blood transfusion provides options for treatment. However, these are not always uneventful. There could also be a lack of response to Erythropoietin. This case report describes the complexity of tumor anemia. It also includes a more detailed discussion on the Fatigue Syndrome, which is one of the most common symptoms of patients with cancer. In the context of palliative care there is often the question of alternatives for improving the quality of patients life. Some kinds of treatment may also cause the opposite effect. A multidimensional assessment should help to approach this difficult issue and to find ways for a meaningful treatment of the symptoms of anemia. PMID:22328049

  8. [Ethics and palliative care in patients with advanced cancer].

    PubMed

    Tenorio-González, Francisco

    2005-01-01

    Recent research in both the biology of cancer and the treatment of patients has increased the life expectancy of cancer patients with recurrence and who have a longer survival rate. Cancer is no longer considered a lethal but a chronic disease. More patients survive, but above all there are more patients with recurrences thus increasing the need for physical or psychological treatment of patients with longer lives. The American Cancer Society reported in 1992 that in the U.S. more than 8 million people survived between 4 and 5 years. This produces both an ethical and medical challenge for treatment of cancer patients. This paper reviews the actual criteria for palliative care: treatment for pain and the ethical and psychological treatment of advanced cancer patients and their families. PMID:16454965

  9. Healing Environments: Integrative Medicine and Palliative Care in Acute Care Settings.

    PubMed

    Estores, Irene M; Frye, Joyce

    2015-09-01

    Conventional medicine is excellent at saving lives; however, it has little to offer to address the physical, mental, and emotional distress associated with life-threatening or life-limiting disease. An integrative approach to palliative care in acute care settings can meet this need by creating healing environments that support patients, families, and health care professionals. Mindful use of language enhances the innate healing response, improves communication, and invites patients and families to participate in their care. Staff should be offered access to skills training to cultivate compassion and mindful practice to enhance both patient and self-care. PMID:26333757

  10. Leveraging the Health and Retirement Study To Advance Palliative Care Research

    PubMed Central

    Langa, Kenneth M.; Smith, Alexander K.; Cagle, John; Ornstein, Katherine; Silveira, Maria J.; Nicholas, Lauren; Covinsky, Kenneth E.; Ritchie, Christine S.

    2014-01-01

    Abstract Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research. PMID:24694096

  11. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

    ERIC Educational Resources Information Center

    Pollens, Robin D.

    2012-01-01

    Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

  12. Palliative Care Training and Research: The Development in Europe and the Bologna Experience

    PubMed Central

    Bolognesi, Deborah; Brighi, Nicole; Muciarelli, Pier-Angelo; Biasco, Guido

    2013-01-01

    Development of palliative care (PC) culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline. PMID:23766591

  13. Palliative care training and research: the development in europe and the bologna experience.

    PubMed

    Bolognesi, Deborah; Brighi, Nicole; Muciarelli, Pier-Angelo; Biasco, Guido

    2013-01-01

    Development of palliative care (PC) culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline. PMID:23766591

  14. Hospice and palliative care development in India: a multimethod review of services and experiences.

    PubMed

    McDermott, Elizabeth; Selman, Lucy; Wright, Michael; Clark, David

    2008-06-01

    Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state, and documenting the perspectives and experiences of those involved. A multimethod review was used, which included synthesis of evidence from published and grey literature, ethnographic field visits, qualitative interviews with 87 individuals from 12 states, and collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/union territories. Development of services is uneven, with greater provision evident in the south than the north, but for the majority of states, coverage is poor. Barriers to the development of palliative care include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting Western models of hospice and palliative care for implementation in the Indian cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is used to increase the momentum of progress. PMID:18395401

  15. Using routine data to improve palliative and end of life care

    PubMed Central

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-01-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data. PMID:26928173

  16. Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center

    PubMed Central

    Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim

    2013-01-01

    Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412

  17. [The present and future of community/home-based palliative care in Taiwan].

    PubMed

    Ueng, Ruey-Shiuan; Hsu, Su-Hsuan; Shih, Chih-Yuan; Huang, Sheng-Jean

    2015-04-01

    In Taiwan, the Department of Health (DOH) has implemented regulations and policies related to hospice and palliative care since 1995. Taiwan is the first country in Asia to have a Natural Death Act, promulgated in 2000. Although recognition of the need for palliative care in non-cancer terminally ill patients is increasing, at present, the needs of these patients are often not met. Moreover, while a majority of the population prefers to die at home, the percentage of patients who die in the home setting remains small. The palliative care system should be adjusted to improve the accessibility and continuity of care based on the needs of patients. Therefore, the Jin-Shan Branch of the National Taiwan University Hospital has run a pilot community palliative care service model since 2012. National Health Insurance reimbursement was introduced in 2014 for community-based palliative care services. Establishing a formal system of community-based palliative care should be encouraged in order to improve the quality of care at the end of life and to allow more patients to receive end-of-life care and die in their own communities. This system will require that skilled nurses provide discharge planning, symptoms control, end-of-life communications, social-resources integration, and social-support networks in order to achieve a high quality of end-of-life care. PMID:25854944

  18. Coverage and development of specialist palliative care services across the World Health Organization European Region (2005–2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries

    PubMed Central

    Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

    2015-01-01

    Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient

  19. "It Was Definitely Very Different": An evaluation of palliative care teaching to medical students using a mixed methods approach.

    PubMed

    Brand, Alison H; Harrison, Amanda; Kumar, Koshila

    2015-01-01

    Given our ageing population and the increase in chronic disease, palliative care will become an increasingly important part of doctors' workloads, with implications for palliative care education. This study used a mixed methods strategy to evaluate second-year medical students' learning outcomes and experiences within a palliative care education program. Analysis of pre- and post-test scores showed a significant improvement in students' attitudinal scores, but no change in knowledge as measured by multiple-choice questions. Analysis of qualitative data revealed that students' learning experience was marked by a lack of clear learning objectives and experiential learning opportunities. Students also reported divergent reactions to death and dying and noted that palliative care was different from other areas of clinical medicine. This study revealed that palliative care teaching results in improved attitudes toward palliative care, reflecting the holistic and patient-focused nature of the palliative care curriculum. PMID:26399087

  20. Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues.

    PubMed

    Yang, Y Tony; Mahon, Margaret M

    2012-11-01

    The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. PMID:22071573

  1. Validation of a New Instrument for Self-care in Spanish Palliative Care Professionals Nationwide.

    PubMed

    Galiana, Laura; Oliver, Amparo; Sansó, Noemí; Benito, Enric

    2015-01-01

    Self-care is a cornerstone issue for those who deal with stressful events, as it is the case of palliative care professionals. It has been related to awareness, coping with death and quality of life, among others, but no measurement instruments have been used in palliative care professionals. This research presents and validates a brief new measure with clinical and psychometric good properties, called Professional Self-Care Scale (PSCS). The PSCS assesses professionals' self-care in three areas: physical self-care, inner self-care, and social self-care. Data come from a cross-sectional survey in a sample of 385 professionals of palliative care. The Mindful Attention Awareness Scale, the Coping with Death Scale, and the Professional's Quality of Life measure were also used. Results of the CFA showed adequate fit (χ2(24, N = 385) = 140.66, p < .01; CFI = .91; GFI = .93; SRMR = .09; and RMSEA = .10). Evidence pointed better reliability indices for the 3-item physical and inner factors of self-care than for the social dimension (Rho and GLB of .64, .90, and .57, respectively). Evidence regarding validity was consistent with previous literature. When levels of self-care were examined, women showed higher levels of inner and social self-care (F(3, 371) = 3.19, p = .02, η2 = .03, as also did psychologists when compared to doctors and nurses (F(9, 1074) = 2.00, p = .04, η2 = .02. The PSCS has shown adequate psychometric properties, and thus it could be used as diagnostic instrument when studying professionals' health. PMID:26364786

  2. The Use of Emergency Medication Kits in Community Palliative Care: An Exploratory Survey of Views of Current Practice in Australian Home-Based Palliative Care Services.

    PubMed

    Bullen, Tracey; Rosenberg, John P; Smith, Bradley; Maher, Kate

    2015-09-01

    Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care. PMID:24871345

  3. Palliative care for patients with advance chronic kidney disease.

    PubMed

    Douglas, C A

    2014-01-01

    Over the past three decades there has been a dramatic rise in the number of patients with advanced chronic kidney disease. The fastest expanding group receiving dialysis has been the elderly. However, for those patients who are very elderly with co-morbidity, dialysis may not offer a survival advantage. Therefore, active conservative management is a growing service offered by many renal units in the UK and focuses on non-dialytic correction of fluid and electrolyes, management of renal anaemia, and assessment and management of symptoms. The five-year survival of a patient over 75 years of age starting dialysis is 20% and if a patient is over 75 years, has co-morbidity, or a poor performance status, dialysis may not offer any survival advantage. Whether a patient is managed by dialysis or by conservative management the symptom burden suffered is high. These symptoms are under-recognised and often managed poorly because of increased drug toxicity in renal failure. This complex group of patients require close working between renal, palliative care, medicine for the elderly, and community teams, to allow best quality of life and end of life care. This review describes some of the challenges in providing Advanced Care Planning for dialysis and conservatively managed patients, highlights the symptom burden of patients with advanced chronic kidney disease, and offers guidance in how to manage the symptoms effectively. PMID:25318401

  4. Neurologic aspects of palliative care: the end of life setting.

    PubMed

    Sizoo, Eefje M; Grisold, Wolfgang; Taphoorn, Martin J B

    2014-01-01

    As there are, to date, few curative treatment options for many neurologic diseases, end of life (EOL) care is an important aspect of the treatment of neurologic patients. In the EOL phase, treatment should be aimed at relieving symptoms, maintaining quality of life, and facilitating a peaceful and dignified way of dying. Common signs and symptoms in the EOL phase of neurologic patients are raised intracranial pressure, seizures, confusion, cognitive deficits, and impaired motor function. Supportive treatment of these symptoms (such as analgesic drugs, dexamethasone, antiepileptic and neuroleptic drugs) is of major importance to maintain quality of life as long as possible. Another key aspect of EOL care is EOL decision making, such as withholding or withdrawing life-sustaining treatment, and palliative sedation. The main goal of EOL decision making is the prevention and relief of suffering, even if this might hasten death. Especially in advanced stages of many neurologic diseases, confusion, cognitive deficits, communication deficits, and decreasing levels of consciousness may impair the competence of patients to participate in EOL decision making. Given that patient autonomy is increasingly essential, advance care planning (ACP) at an early stage of the disease should be considered. PMID:24365413

  5. Culture and spirituality: essential components of palliative care.

    PubMed

    Speck, Peter

    2016-06-01

    Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base. PMID:26933233

  6. Best practices for pediatric palliative cancer care: a primer for clinical providers.

    PubMed

    Levine, Deena; Lam, Catherine G; Cunningham, Melody J; Remke, Stacy; Chrastek, Jody; Klick, Jeffrey; Macauley, Robert; Baker, Justin N

    2013-09-01

    Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care. PMID:24400391

  7. Primary Palliative Care for the General Internist: Integrating Goals of Care Discussions into the Outpatient Setting

    PubMed Central

    Ahia, Chad L.; Blais, Christopher M.

    2014-01-01

    Background Primary palliative care consists of the palliative care competencies required of all primary care clinicians. Included in these competencies is the ability to assist patients and their families in establishing appropriate goals of care. Goals of care help patients and their families understand the patient's illness and its trajectory and facilitate medical care decisions consistent with the patient's values and goals. General internists and family medicine physicians in primary care are central to getting patients to articulate their goals of care and to have these documented in the medical record. Case Report Here we present the case of a 71-year-old male patient with chronic obstructive pulmonary disorder, congestive heart failure, and newly diagnosed Alzheimer dementia to model pertinent end-of-life care communication and discuss practical tips on how to incorporate it into practice. Conclusion General internists and family medicine practitioners in primary care are central to eliciting patients' goals of care and achieving optimal end-of-life outcomes for their patients. PMID:25598737

  8. Sustainable practice improvements: impact of the Comprehensive Advanced Palliative Care Education (CAPCE) program.

    PubMed

    Harris, Diane; Hillier, Loretta M; Keat, Nancy

    2007-01-01

    This paper describes an education program designed to improve palliative care practice through the development of workplace hospice palliative care resources (PCRs), and its impact on knowledge transfer and longer-term changes to clinical practice. Evaluation methods included pre- and post-program questionnaires, and a survey of learners' (n=301) perceptions of program learning strategies. Interviews (n=21) were conducted with a purposeful sample of PCRs and representatives from their work sites. Ratings of the sessions indicated that they were relevant to learners' clinical practice. At follow up, the majority of learners (83%) continued to serve as PCRs. Many positive effects were identified, including enhanced pain and symptom management, staff education, and development of care policies and guidelines. Management support, particularly the prioritization of palliative care and staff development, were factors facilitating sustained implementation. These findings highlight the importance of multimodal learning strategies and supportive work environments in the development of PCRs to enhance palliative care practice. PMID:18251444

  9. Veterinary hospice and palliative care: a comprehensive review of the literature.

    PubMed

    Goldberg, Katherine J

    2016-04-01

    The death of a pet is a universal experience for those who share their lives with animals. In parallel with a rising interest in palliative medicine, hospice care and advance-care planning within human medicine, increasing attention is currently being given to serious illness and death within veterinary medicine. Our ability to prolong life has created the need for thoughtful end of life discourse. Interest in hospice and palliative care for companion animals is on the rise, yet there has been limited scholarly research in these areas to date. This review concludes that veterinary hospice and palliative care is currently hindered by an inadequate amount of scholarly research to guide clinicians. Given a lack of prospective studies in veterinary hospice and palliative care to date, a significant opportunity exists for veterinary teaching institutions to contribute to the literature in an important and growing field. PMID:27056812

  10. State Plan for Child Day Care [Virginia].

    ERIC Educational Resources Information Center

    Gravett, Marty; And Others

    Virginia's first state plan for child day care begins with 14 sections covering several aspects of child care. Section I reviews child care history and trends. Sections II, III, IV, and V argue, respectively, that child day care is important to government, business, families, and children. Elements of a comprehensive child day care delivery system…

  11. Optimizing Infant Development: Strategies for Day Care.

    ERIC Educational Resources Information Center

    Chambliss, Catherine

    This guide for infant day care providers examines the importance of early experience for brain development and strategies for providing optimal infant care. The introduction discusses the current devaluation of day care and idealization of maternal care and identifies benefits of quality day care experience for intellectual development, sleep…

  12. Family Day Care Training Curriculum (Lao).

    ERIC Educational Resources Information Center

    Nakatsu, Gail

    California's Family Day Care Training Program was designed to recruit and train, in 7 weeks, Lao, Vietnamese, and Chinese refugees to establish their own state-licensed, family day care homes. Topics in the program's curriculum include an introduction to family day care, state licenses for family day care, state licensing requirements for family…

  13. The Illness Experience: Palliative Care Given the impossibility of Healing.

    PubMed

    Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida

    2016-06-01

    This paper presents a reflection about being terminally ill and the various ways that the subject has at its disposal to deal with this event. The objective is to understand the experience of palliation for patients undergoing no therapeutic possibilities of cure. The methodology of this study has the instruments to semi-structured interview, the participant observation and the field diary, and the Descriptive Analysis of Foucault's inspiration how the narratives of the subjects were perceived. The Results of paper there was the possibility of looking at the experience of illness through the eyes of a subject position assumed by the very sick. As conclusion we have than when choosing palliative care, the terminally ill opts for a way to feel more comfortable and resists the impositions of the medical model of prolonging life. O presente trabalho traz uma reflexão a respeito do ser um doente terminal e das várias maneiras que o sujeito tem a seu dispor para lidar com esse acontecimento. Nosso objetivo foi compreender a experiência da paliação por sujeitos doentes sem possibilidades terapêuticas de cura. A metodologia deste estudo teve como instrumentos a Entrevista Narrativa, a Observação Participante e o Diário de Campo, sendo a Análise Descritiva de inspiração foucaultiana o modo como as narrativas dos sujeitos foram percebidas. O resultado do estudo mostrou a possibilidade de olhar a experiência do adoecer através da ótica de uma posição de sujeito assumida pelo próprio enfermo. E concluímos que ao escolher os cuidados paliativos, o doente terminal opta por um modo de se sentir mais confortável e resiste às imposições do modelo médico de prolongamento da vida. PMID:27384275

  14. Compilation of the neonatal palliative care clinical guideline in neonatal intensive care unit

    PubMed Central

    Zargham-Boroujeni, Ali; Zoafa, Aniyehsadat; Marofi, Maryam; Badiee, Zohreh

    2015-01-01

    Background: Clinical guidelines are important instruments for increasing the quality of clinical practice in the treatment team. Compilation of clinical guidelines is important due to special condition of the neonates and the nurses facing critical conditions in the neonatal intensive care unit (NICU). With 98% of neonatal deaths occurring in NICUs in the hospitals, it is important to pay attention to this issue. This study aimed at compilation of the neonatal palliative care clinical guidelines in NICU. Materials and Methods: This study was conducted with multistage comparative strategies with localization in Isfahan in 2013. In the first step, the components of the neonatal palliative care clinical guidelines were determined by searching in different databases. In the second stage, the level of expert group's consensus with each component of neonatal palliative care in the nominal group and focus group was investigated, and the clinical guideline was written based on that. In the third stage, the quality and applicability were determined with the positive viewpoints of medical experts, nurses, and members of the science board of five cities in Iran. Data were analyzed by descriptive statistics through SPSS. Results: In the first stage, the draft of neonatal palliative care was designed based on neonates’, their parents’, and the related staff's requirements. In the second stage, its rank and applicability were determined and after analyzing the responses, with agreement of the focus group, the clinical guideline was written. In the third stage, the means of indication scores obtained were 75%, 69%, 72%, 72%, and 68% by Appraisal of Guidelines for Research and Evaluation (AGREE) instrument. Conclusions: The compilation of the guideline can play an effective role in provision of neonatal care in nursing. PMID:26120329

  15. The prioritisation of paediatrics and palliative care in cancer control plans in Africa

    PubMed Central

    Weaver, M S; Yao, A J J; Renner, L A; Harif, M; Lam, C G

    2015-01-01

    Background: Given the burden of childhood cancer and palliative care need in Africa, this paper investigated the paediatric and palliative care elements in cancer control plans. Methods: We conducted a comparative content analysis of accessible national cancer control plans in Africa, using a health systems perspective attentive to context, development, scope, and monitoring/evaluation. Burden estimates were derived from World Bank, World Health Organisation, and Worldwide Palliative Care Alliance. Results: Eighteen national plans and one Africa-wide plan (10 English, 9 French) were accessible, representing 9 low-, 4 lower-middle-, and 5 upper-middle-income settings. Ten plans discussed cancer control in the context of noncommunicable diseases. Paediatric cancer was mentioned in 7 national plans, representing 5127 children, or 13% of the estimated continental burden for children aged 0–14 years. Palliative care needs were recognised in 11 national plans, representing 157 490 children, or 24% of the estimated Africa-wide burden for children aged 0–14 years; four plans specified paediatric palliative needs. Palliative care was itemised in four budgets. Sample indicators and equity measures were identified, including those highlighting contextual needs for treatment access and completion. Conclusions: Recognising explicit strategies and funding for paediatric and palliative services may guide prioritised cancer control efforts in resource-limited settings. PMID:26042935

  16. [Importance of Anesthesiologists in the Work of a Palliative Care Team].

    PubMed

    Hozumi, Jun; Sumitani, Masahiko

    2016-03-01

    World Health Organization has proposed that palliative medicine should be applied early in the course of the malignant diseases. Regrettably, however, palliative care has been usually provided to patients with the advanced stage of cancer, as terminal care. Recently, palliative medicine begins at the time when patients are diagnosed with cancer. In response to changes in clinical settings of palliative medicine, anesthesiologists, with substantial experience in interdisciplinary pain management, can utilize their advantages in providing palliative medicine to cancer patients: 1) use of opioid analgesics; 2) considering the biopsychosocial model of pain; 3) helping patients live as actively as possible until death; and 4) helping the family cope with the patient's illness and their own bereavement. PMID:27097502

  17. Integrating palliative care in oncologic emergency departments: Challenges and opportunities

    PubMed Central

    Elsayem, Ahmed F; Elzubeir, Hiba E; Brock, Patricia A; Todd, Knox H

    2016-01-01

    Although visiting the emergency departments (EDs) is considered poor quality of cancer care, there are indications these visits are increasing. Similarly, there is growing interest in providing palliative care (PC) to cancer patients in EDs. However, this integration is not without major challenges. In this article, we review the literature on why cancer patients visit EDs, the rates of hospitalization and mortality for these patients, and the models for integrating PC in EDs. We discuss opportunities such integration will bring to the quality of cancer care, and resource utilization of resources. We also discuss barriers faced by this integration. We found that the most common reasons for ED visits by cancer patients are pain, fever, shortness of breath, and gastrointestinal symptoms. The majority of the patients are admitted to hospitals, about 13% of the admitted patients die during hospitalization, and some patients die in ED. Patients who receive PC at an ED have shorter hospitalization and lower resource utilization. Models based solely on increasing PC provision in EDs by PC specialists have had modest success, while very limited ED-based PC provision has had slightly higher impact. However, details of these programs are lacking, and coordination between ED based PC and hospital-wide PC is not clear. In some studies, the objectives were to improve care in the communities and reduce ED visits and hospitalizations. We conclude that as more patients receive cancer therapy late in their disease trajectory, more cancer patients will visit EDs. Integration of PC with emergency medicine will require active participation of ED physicians in providing PC to cancer patients. PC specialist should play an active role in educating ED physicians about PC, and provide timely consultations. The impact of integrating PC in EDs on quality and cost of cancer care should be studied. PMID:27081645

  18. Specialized Pediatric Palliative Home Care: A Prospective Evaluation

    PubMed Central

    Borasio, Gian Domenico; Nickolay, Carla; Bender, Hans-Ulrich; von Lüttichau, Irene; Führer, Monika

    2013-01-01

    Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness–Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children. PMID:24168349

  19. Integrating palliative care in oncologic emergency departments: Challenges and opportunities.

    PubMed

    Elsayem, Ahmed F; Elzubeir, Hiba E; Brock, Patricia A; Todd, Knox H

    2016-04-10

    Although visiting the emergency departments (EDs) is considered poor quality of cancer care, there are indications these visits are increasing. Similarly, there is growing interest in providing palliative care (PC) to cancer patients in EDs. However, this integration is not without major challenges. In this article, we review the literature on why cancer patients visit EDs, the rates of hospitalization and mortality for these patients, and the models for integrating PC in EDs. We discuss opportunities such integration will bring to the quality of cancer care, and resource utilization of resources. We also discuss barriers faced by this integration. We found that the most common reasons for ED visits by cancer patients are pain, fever, shortness of breath, and gastrointestinal symptoms. The majority of the patients are admitted to hospitals, about 13% of the admitted patients die during hospitalization, and some patients die in ED. Patients who receive PC at an ED have shorter hospitalization and lower resource utilization. Models based solely on increasing PC provision in EDs by PC specialists have had modest success, while very limited ED-based PC provision has had slightly higher impact. However, details of these programs are lacking, and coordination between ED based PC and hospital-wide PC is not clear. In some studies, the objectives were to improve care in the communities and reduce ED visits and hospitalizations. We conclude that as more patients receive cancer therapy late in their disease trajectory, more cancer patients will visit EDs. Integration of PC with emergency medicine will require active participation of ED physicians in providing PC to cancer patients. PC specialist should play an active role in educating ED physicians about PC, and provide timely consultations. The impact of integrating PC in EDs on quality and cost of cancer care should be studied. PMID:27081645

  20. The basis, ethics and provision of palliative care for dementia: A review.

    PubMed

    Mahin-Babaei, Fariba; Hilal, Jamal; Hughes, Julian C

    2016-01-01

    Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia. PMID:26421475

  1. 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. PMID:26733700

  2. Experience in Strategic Networking to Promote Palliative Care in a Clinical Academic Setting in India

    PubMed Central

    Nair, Shoba; Tarey, SD; Barathi, B; Mary, Thiophin Regina; Mathew, Lovely; Daniel, Sudha Pauline

    2016-01-01

    Background: Palliative care in low and middle-income countries is a new discipline, responding to a greater patient need, than in high-income countries. By its very nature, palliative as a specialty has to network with other specialties to provide quality care to patients. For any medical discipline to grow as a specialty, it should be well established in the teaching medical institutions of that country. Data show that palliative care is more likely to establish and grow in an academic health care institution. It is a necessity that multiple networking strategies are adopted to reach this goal. Objectives: (1) To describe a strategic approach to palliative care service development and integration into clinical academic setting. (2) To present the change in metrics to evaluate progress. Design and Setting: This is a descriptive study wherein, the different strategies that are adopted by the Department of Palliative Medicine for networking in an academic health care institution and outside the institution are scrutinized. Measurement: The impact of this networking was assessed, one, at the level of academics and the other, at the level of service. The number of people who attended various training programs conducted by the department and the number of patients who availed palliative care service over the years were assessed. Results: Ten different strategies were identified that helped with networking of palliative care in the institution. During this time, the referrals to the department increased both for malignant diseases (52–395) and nonmalignant diseases (5–353) from 2000 to 2013. The academic sessions conducted by the department for undergraduates also saw an increase in the number of hours from 6 to 12, apart from the increase in a number of courses conducted by the department for doctors and nurses. Conclusion: Networking is an essential strategy for the establishment of a relatively new medical discipline like palliative care in a developing and

  3. Health care professionals’ perceptions towards lifelong learning in palliative care for general practitioners: a focus group study

    PubMed Central

    2014-01-01

    Background There is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care professionals and professionals from organizations who provide training and education. Methods Five focus groups were brought together in Belgium, with a total of 29 participants, including members of the three categories mentioned above. They were analysed using a constant comparison method. Results The analysis revealed that undergraduate education and continuing medical education (CME) while in practice, is insufficient to prepare GPs for their palliative work. Workplace learning (WPL) through collaboration with specialized palliative home-care nurses seems to be a valuable alternative. Conclusions The effectiveness of undergraduate education might be enhanced by adding practical experience. Providers of continuing medical education should look to organize interactive, practice-based and interprofessional sessions. Therefore, teachers need to be trained to run small group discussions. In order to optimize workplace learning, health care professionals should be trained to monitor each other’s practice and to provide effective feedback. Further research is needed to clarify which aspects of interprofessional teamwork (e.g. professional hierarchy, agreements on tasks and responsibilities) influence the effectiveness of workplace learning. PMID:24552145

  4. Applying sociodramatic methods in teaching transition to palliative care.

    PubMed

    Baile, Walter F; Walters, Rebecca

    2013-03-01

    We introduce the technique of sociodrama, describe its key components, and illustrate how this simulation method was applied in a workshop format to address the challenge of discussing transition to palliative care. We describe how warm-up exercises prepared 15 learners who provide direct clinical care to patients with cancer for a dramatic portrayal of this dilemma. We then show how small-group brainstorming led to the creation of a challenging scenario wherein highly optimistic family members of a 20-year-old young man with terminal acute lymphocytic leukemia responded to information about the lack of further anticancer treatment with anger and blame toward the staff. We illustrate how the facilitators, using sociodramatic techniques of doubling and role reversal, helped learners to understand and articulate the hidden feelings of fear and loss behind the family's emotional reactions. By modeling effective communication skills, the facilitators demonstrated how key communication skills, such as empathic responses to anger and blame and using "wish" statements, could transform the conversation from one of conflict to one of problem solving with the family. We also describe how we set up practice dyads to give the learners an opportunity to try out new skills with each other. An evaluation of the workshop and similar workshops we conducted is presented. PMID:22889858

  5. Psychiatric Issues in Palliative Care: Assessing Mental Capacity

    PubMed Central

    Udo, Itoro; Mohammed, Zeid; Gash, Amanda

    2013-01-01

    Issues surrounding capacity to consent to or refuse treatment are increasingly receiving clinical and legal attention. Through the use of 3 case vignettes that involve different aspects of mental health care in palliative care settings, mental capacity issues are discussed. The vignettes tackle capacity in a patient with newly developed mental illness consequent to physical illness, capacity in a patient with mental illness but without delirium and capacity in a patient with known impairment of the mind. These discussions give credence to best practice position where physicians act in the best interests of their patients at all times. It is important to emphasize that capacity decisions have to be made on a case by case basis, within the remit of legal protection. This is a fundamental requirement of the Mental Capacity Act 2005, England & Wales (MCA). The later is used as the legal basis for these discussions. The psychiatric liaison service is a useful resource to provide consultation, advice and or joint assessment to clinicians encountering complex dilemmas involving decision-making capacity. PMID:25278761

  6. Developing leadership in rural interprofessional palliative care teams.

    PubMed

    Hall, Pippa; Weaver, Lynda; Handfield-Jones, Richard; Bouvette, Maryse

    2008-01-01

    This project brought together community-based practitioners and academics to develop and deliver interventions designed to enhance the leadership abilities of the designated leaders of seven rural/small town-based palliative care teams. Members of these community-based teams have already gained recognition for their teams' leadership and service delivery in their communities. All of the teams had worked closely with most members of the academic team prior to this project. The team members participated in a needs assessment exercise developed by the Sisters of Charity of Ottawa Health Service and University of Ottawa academic team. Results of the needs assessment identified leadership qualities that had contributed to their success, as well as their needs to further enhance their individual leadership qualities. The team effort, however, was the most important factor contributing to the success of their work. The interventions developed to address the identified needs had to be adapted creatively through the collaborative efforts of both the community and academic teams. The educational interventions facilitated the integration of learning at the individual and community level into the busy work schedules of primary health care providers. PMID:19005956

  7. Palliative Care Eases Symptoms, Enhances Lives | NIH MedlinePlus the Magazine

    MedlinePlus

    ... cancer, heart disease, lung disease, kidney failure, AIDS, cystic fibrosis and other diseases, experience physical symptoms and emotional distress. Sometimes these are related to the patient's medical treatment. You may want to consider palliative care if ...

  8. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach.

    PubMed

    Kenner, C; Press, J; Ryan, D

    2015-12-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801

  9. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach

    PubMed Central

    Kenner, C; Press, J; Ryan, D

    2015-01-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801

  10. The need for increased access to pediatric hospice and palliative care.

    PubMed

    Jones, Brian W

    2011-01-01

    Pediatric hospice and palliative care continue to be an underutilized model of care. There is much confusion over the differences between hospice and palliative care. Nurses and physicians continue to need specialized training regarding end-of-life care and the pediatric population. Children and their families may needlessly be suffering during the dying process. Many barriers exist that prevent its use among medical professionals. This article discusses some of these barriers and strategies to reduce them. Recent changes in health care law will allow both curative and hospice care to be provided at the same time. PMID:21841410

  11. Aberrant Opioid Use and Urine Drug Testing in Outpatient Palliative Care.

    PubMed

    Arthur, Joseph A; Haider, Ali; Edwards, Tonya; Waletich-Flemming, Jessica; Reddy, Suresh; Bruera, Eduardo; Hui, David

    2016-07-01

    Aberrant opioid use is a public health issue, which has not been adequately described in the palliative care literature. With the increasing integration of palliative care into oncologic care, palliative care clinicians are seeing patients earlier in the disease trajectory, and therefore, more outpatients with chronic pain requiring chronic opioid therapy. This may have resulted in a concomitant rise in the number of patients with aberrant opioid use. In this article, we report on two patients with aberrant opioid-related behavior seen at our palliative care clinic. A high suspicion of opioid abuse, misuse, or diversion based on certain behavioral cues necessitated the ordering of a urine drug test (UDT). The tests helped the medical team to confirm an already existing pattern of maladaptive opioid use. In both cases, we provided ample opioid education and implemented effective strategies to address their aberrant opioid use. These cases suggest the need for palliative care clinicians to develop strategies to effectively address this issue in our field of medicine. It also highlights the usefulness of UDT in the outpatient palliative care setting. PMID:27171327

  12. Extending emotion and decision-making beyond the laboratory: The promise of palliative care contexts.

    PubMed

    Ferrer, Rebecca A; Padgett, Lynne; Ellis, Erin M

    2016-08-01

    Although laboratory-based research on emotion and decision-making holds the distinct advantage of rigorous experimental control conditions that allow causal inferences, the question of how findings in a laboratory generalize to real-world settings remains. Identifying ecologically valid, real-world opportunities to extend laboratory findings is a valuable means of advancing this field. Palliative care-or care intended to provide relief from serious illness and aging-related complications during treatment or at the end of life-provides a particularly rich opportunity for such work. Here, we present an overview of palliative care, summarize existing research on emotion and palliative care decision-making, highlight challenges associated with conducting such research, outline examples of collaborative projects leveraging palliative care as a context for generating fundamental knowledge about emotion and decision-making, and describe the resources and collaborations necessary to conduct this type of research. In sum, palliative care holds unique promise as an emotionally laden context in which to answer fundamental questions about emotion and decision-making that extends our theoretical understanding of the role of emotion in high-stakes decision-making while simultaneously generating knowledge that can improve palliative care implementation. (PsycINFO Database Record PMID:27018611

  13. Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care

    PubMed Central

    2011-01-01

    Background Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is

  14. Knowledge and attitude of final - year medical students in Germany towards palliative care - an interinstitutional questionnaire-based study

    PubMed Central

    2011-01-01

    Background To care for terminally ill and dying patients requires a thorough medical education, encompassing skills, knowledge, and attitudes in the field of palliative care. Undergraduate medical students in Germany will receive mandatory teaching in palliative care in the near future driven by recent changes in the Medical Licensure Act. Before new curricula can be implemented, the knowledge of medical students with respect to palliative care, their confidence to handle palliative care situations correctly, their therapeutic attitude, and their subjective assessment about previous teaching practices have to be better understood. Method We designed a composite, three-step questionnaire (self estimation of confidence, knowledge questions, and opinion on the actual and future medical curriculum) conducted online of final - year medical students at two universities in Germany. Results From a total of 318 enrolled students, 101 responded and described limited confidence in dealing with specific palliative care issues, except for pain therapy. With regard to questions examining their knowledge base in palliative care, only one third of the students (33%) answered more than half of the questions correctly. Only a small percentage of students stated they had gained sufficient knowledge and experience in palliative care during their studies, and the vast majority supported the introduction of palliative care as a mandatory part of the undergraduate curriculum. Conclusion This study identifies medical students' limited confidence and knowledge base in palliative care in 2 German universities, and underlines the importance of providing a mandatory palliative care curriculum. PMID:22112146

  15. Progress in palliative care in Israel: comparative mapping and next steps

    PubMed Central

    2012-01-01

    Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs. PMID:22913773

  16. A fast track path improves access to palliative care for people with learning disabilities.

    PubMed

    Whitington, Jane; Ma, Peng

    People with learning disabilities often experience inequalities in accessing general health services. This group, their families and carers need access to effective palliative care when facing a life limiting illness. This article describes the development and implementation of a fast track referral pathway for people with learning disabilities at St Francis Hospice in Essex. Our aim is to share this pathway so others can replicate the collaborative working to improve access to palliative care services for this group. PMID:20514883

  17. [Suicidal drug overdose while receiving palliative home care: a case report].

    PubMed

    Mosich, Veronika; Müller-Busch, H Christof

    2014-05-01

    Suicidal thoughts are a common phenomenon in palliative care which can be seen in around 10% of the patients. There is very little knowledge about attempted and committed suicide. This article is a case report about a patient with lung cancer in a terminal state of illness who ingested drugs in a toxic dose while receiving palliative home care. This article deals with ethical issues in medical treatment and various ways of decision-making. PMID:24733303

  18. Corticosteroid prescribing in palliative care settings: a retrospective analysis in New Zealand

    PubMed Central

    2014-01-01

    Background Corticosteroids are a potent group of medicines, with many adverse effects, that are widely prescribed in palliative care for both specific and non-specific indications. The aim of this study was to document current patterns of corticosteroid prescribing in New Zealand palliative care settings and to reflect on whether they were in line with international experience. Methods A retrospective review of inpatient use of corticosteroids was undertaken in a sample of six New Zealand hospices. Data were collected on numbers of patients prescribed corticosteroids, indications for use, choice of agent, doses and dosage changes, duration of course, incidence of adverse effects, method of stopping, use of guidelines, and processes for monitoring and review. Results The case notes of 1179 inpatients were reviewed and 768 patients (65.1%) had received at least one course of corticosteroids. There was a marked consistency in the proportion of patients prescribed corticosteroids among the sample hospices (61-69%). Detailed information was recorded for a sample of 260 patients. Corticosteroids were prescribed most commonly for non-specific reasons (40.4% of prescribing events), followed by neurological (25.3%) and soft tissue infiltration symptoms (14.4%). The agent of choice was dexamethasone with a dose range of 1 mg to 40 mg and a median dose of 8 mg. The median course duration for all corticosteroid prescribing events was 29 days. Abrupt stopping occurred in 72 (23.2%) cases, of these 35 (49%) had been on a course of corticosteroids for more than three weeks. Guidelines were only available in one hospice. Monitoring and review was documented in 135 (52%) of cases, and adverse effects were recorded in 82 (32%); these are likely to be underestimates due to a high level of non-recording. Conclusions This New Zealand study showed that corticosteroids are widely prescribed in palliative care, most commonly for non-specific indications. These findings are consistent

  19. Impact of an oncology palliative care clinic on access to home care services.

    PubMed

    Jang, Raymond W; Burman, Debika; Swami, Nadia; Kotler, Jennifer; Banerjee, Subrata; Ridley, Julia; Mak, Ernie; Bryson, John; Rodin, Gary; Le, Lisa W; Zimmermann, Camilla

    2013-08-01

    Home care (HC) is important for patients with cancer as performance status declines. Our study of 1224 patients at a Canadian cancer center examined the impact of an oncology palliative care clinic (OPCC) on HC referral. The HC referral frequency was calculated before and after the first OPCC consultation, in total and according to performance status (Palliative Performance Scale, PPS). Characteristics associated with HC referral were investigated. After the first OPCC consultation, there was an increase in HC referral from 39% (477 of 1224; 49% of those with PPS ≤60) to 69% (841 of 1224; 88% of those with PPS ≤60). Factors independently associated with HC referral were poor PPS (P < .001) and older age (P = .003). Thus OPCC involvement resulted in markedly increased HC referrals, particularly for older patients with poor performance status. PMID:22777408

  20. A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care.

    PubMed

    Addington-Hall, Julia M; Karlsen, Saffron

    2005-01-01

    This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services. PMID:15690867

  1. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

    PubMed

    Jones, Barbara L; Contro, Nancy; Koch, Kendra D

    2014-02-01

    Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill. PMID:24488541

  2. Palliative and end-of-life care for people living with dementia in care homes: part 2.

    PubMed

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-29

    This article, the second of two, provides healthcare practitioners with an overview of best practice in palliative and end-of-life care, including nutrition, hydration, oral hygiene and pain management. Communication and spiritual care are discussed, as well as care after death. Providing support and education for families is an important aspect of palliative and end-of-life care. Care home nurses should ensure that the person living with dementia is at the centre of decision making, and provide care that is inclusive of their needs and wishes. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. PMID:27353937

  3. [Intensive care - palliative care. Contradiction or supplement? Considerations on ethical issues and principles in the treatment of dying patients].

    PubMed

    Müller-Busch, H C

    2001-12-01

    Over the last five decades the progress in intensive care has extended the limitations of controlling the process of dying and given doctors more influence in determining the time of death. More recently, palliative care has emerged as a new approach in response to the ethical dilemmas of modern medicine, which accepts that dying is a natural process that should not be hastened or delayed through medical interventions. While in Germany in 1999 more than 50 000 people have died in intensive care units, only a small number of 8000 patients have died in palliative care. In comparison to the highly-developed intensive care sector, palliative care is a much neglected area. The public debate following the legalisation of euthanasia in the Netherlands has highlighted concerns in Germany that intensive care has the potential of inappropriately prolonging life and raised expectations about the alternative therapies offered by palliative care. Doctors in intensive care and in palliative care face similar ethical dilemmas, though with a different weighting: the dilemma between professional judgement and patient autonomy, between traditional medical roles and patient self-determination and the dilemma of extending the span of life at the expense of quality of life. The approach of palliative care with its strong focus on alleviating the suffering of the terminally ill, has influenced the ethical debate of dying in intensive care. Although intensive care and palliative care have different aims and priorities, there are common problems of decision-making which could benefit from a shared orientation and interdisciplinary debate. Both the interpretation of a dying parent's will as well as withdrawing or withholding treatment in patients who are unable to decide for themselves should not merely be guided by the debate on active and passive euthanasia, but rather take into account the appropriateness or inappropriateness of medical actions in the specific situation. PMID:11743668

  4. Group Family Day Care Provider Handbook

    ERIC Educational Resources Information Center

    New York State Office of Children and Family Services, 2006

    2006-01-01

    Group family day care providers need to create high-quality programs where children have opportunities to grow, learn and thrive. Part of providing high-quality child care includes complying with the group family day care regulations from the New York State Office of Children and Family Services (OCFS). This Handbook will help day care providers:…

  5. Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives

    PubMed Central

    2010-01-01

    Background Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care. Methods Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians. Results The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%). Conclusions Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and

  6. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide.

    PubMed

    Jackson, Vicki A; Jacobsen, Juliet; Greer, Joseph A; Pirl, William F; Temel, Jennifer S; Back, Anthony L

    2013-08-01

    Early, integrated palliative care delivered in the ambulatory setting has been associated with improved quality of life, lower rates of depression, and even prolonged survival. We outline an expert practice that provides a step-wise approach to cultivating prognostic awareness in patients cared for by a palliative care clinician early in the course of the patient's disease. This approach can be used by both novice and more experienced palliative care clinicians. PMID:23786425

  7. [Key ethic discussions in hospice/palliative care].

    PubMed

    Jusić, Anica

    2008-12-01

    The goal of palliative care is to provide the best possible quality of life for patients and their families in the process of dying as well as before, during the course of illness. Emphasis is on the role of team approach in every aspect of patient care. The moral principles of sacredness of life and the right of personal autonomy may occasionally come in conflict. The basic principle of the respect of life prohibits killing, which has been accepted in one way or another by all societies - for the reasons of survival. Similar to this, modern morality supports the principle of respecting autonomy and self-management based on informed, conscious personality of an individual. Still, if the needs of another person appear to be more important or desirable than reaching certain individual goals, then the right of an individual regarding autonomy may be legitimately limited. Decisions on not applying or terminating certain procedures must be based on thorough discussion and consideration of the nature and expected result of treatment. If the patient is not competent, then the discussion should involve a team providing care for the patient and a representative of the patient. When the physician and the team can clearly see that unfavorable effects of treatment will outweigh therapeutic benefits, then, according to medical ethics of the respecting beneficiary, the team is not obliged to provide that form of treatment. Except for palliative care, there is no medical treatment that is always obligatory. A physician that does not accept the patient's request to be killed does not limit the patient's autonomy. Autonomy is self-management and capability of the patient to kill him/herself is not limited by the physician's refusal to do so. Even in those cases when patients for various reasons say that death will be a relief, it does not mean that the physician is obliged to terminate life. The superior obligation of physicians is to alleviate pain. If euthanasia would be legal

  8. Role of radiation therapy in palliative care of the patient with cancer.

    PubMed

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

    2014-09-10

    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

  9. Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature.

    PubMed

    Wilkins, Megan L; Dallas, Ronald H; Fanone, Kathleen E; Lyon, Maureen E

    2013-01-01

    Improvement in treatment has led to decreased death in youth with human immunodeficiency virus (HIV) in developed countries. Despite this, youth with HIV are still at risk for increased mortality and morbidity compared with their uninfected counterparts. In developing countries, high numbers of youth die from acquired immune deficiency syndrome (AIDS)-related illnesses due to lack of access to consistent antiretroviral treatment. As a result, pediatric palliative care is a relevant topic for those providing care to youth with HIV. A systematic review was conducted to gather information regarding the status of the literature related to pediatric palliative care and medical decision-making for youth with HIV. The relevant literature published between January 2002 and June 2012 was identified through searches conducted using PubMed, CINAHL, Scopus, and PSYCInfo databases and a series of key words. Articles were reviewed by thematic analysis using the pillars of palliative care set out by the National Consensus Project. Twenty-one articles were retained after review and are summarized by theme. In general, few empirically based studies evaluating palliative care and medical decision-making in youth with HIV were identified. Articles identified focused primarily on physical aspects of care, with less attention paid to psychological, social, ethical, and cultural aspects of care. We recommend that future research focuses on broadening the evaluation of pediatric palliative care among youth with HIV by directly evaluating the psychological, social, ethical, and cultural aspects of care and investigating the needs of all involved stakeholders. PMID:23930080

  10. Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature

    PubMed Central

    Wilkins, Megan L; Dallas, Ronald H; Fanone, Kathleen E; Lyon, Maureen E

    2013-01-01

    Improvement in treatment has led to decreased death in youth with human immunodeficiency virus (HIV) in developed countries. Despite this, youth with HIV are still at risk for increased mortality and morbidity compared with their uninfected counterparts. In developing countries, high numbers of youth die from acquired immune deficiency syndrome (AIDS)-related illnesses due to lack of access to consistent antiretroviral treatment. As a result, pediatric palliative care is a relevant topic for those providing care to youth with HIV. A systematic review was conducted to gather information regarding the status of the literature related to pediatric palliative care and medical decision-making for youth with HIV. The relevant literature published between January 2002 and June 2012 was identified through searches conducted using PubMed, CINAHL, Scopus, and PSYCInfo databases and a series of key words. Articles were reviewed by thematic analysis using the pillars of palliative care set out by the National Consensus Project. Twenty-one articles were retained after review and are summarized by theme. In general, few empirically based studies evaluating palliative care and medical decision-making in youth with HIV were identified. Articles identified focused primarily on physical aspects of care, with less attention paid to psychological, social, ethical, and cultural aspects of care. We recommend that future research focuses on broadening the evaluation of pediatric palliative care among youth with HIV by directly evaluating the psychological, social, ethical, and cultural aspects of care and investigating the needs of all involved stakeholders. PMID:23930080

  11. PALLIATIVE CARE FOR OLDER ADULTS: STATE OF THE ART IN LEBANON.

    PubMed

    Abu-Saad Huijer, Huda; Saab, Mohammad; Hajjar, Ramzi

    2016-01-01

    Palliative care (PC) for older adults constitutes an important human rights challenge and a major public health care priority due to the aging of the population and the lack of health care services addressing the needs of the older people. In Lebanon, the surge in the number of older people with complex needs is unmatched by any increase in the services offered to them. PC in Lebanon is still under- developed and is subject to a number of challenges. These challenges are alarming and must be overcome through introducing health care providers to basic PC principles as recommended by the National Committee for Pain Relief and Palliative Care (NCPRPC). PMID:27169163

  12. Identifying Patients in the Acute Psychiatric Hospital Who May Benefit From a Palliative Care Approach.

    PubMed

    Burton, M Caroline; Warren, Mark; Cha, Stephen S; Stevens, Maria; Blommer, Megan; Kung, Simon; Lapid, Maria I

    2016-04-01

    Identifying patients who will benefit from a palliative care approach is the first critical step in integrating palliative with curative therapy. Criteria are established that identify hospitalized medical patients who are near end of life, yet there are no criteria with respect to hospitalized patients with psychiatric disorders. The records of 276 consecutive patients admitted to a dedicated inpatient psychiatric unit were reviewed to identify prognostic criteria predictive of mortality. Mortality predictors were 2 or more admissions in the past year (P = .0114) and older age (P = .0006). Twenty-two percent of patients met National Hospice and Palliative Care Organization noncancer criteria for dementia. Palliative care intervention should be considered when treating inpatients with psychiatric disorders, especially older patients who have a previous hospitalization or history of dementia. PMID:25318929

  13. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial

    PubMed Central

    2011-01-01

    Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815 PMID:22050863

  14. External Validation of the Number of Risk Factors Score in a Palliative Care Outpatient Clinic at a Comprehensive Cancer Center

    PubMed Central

    Shariff, Imran; Thaler, Howard T.

    2014-01-01

    Abstract Background: Prognostic tools are available to predict if terminally ill cancer patients have days or weeks to live. Tools for predicting the prognosis in ambulatory patients at an earlier stage are lacking. The Number of Risk Factors (NRF) score developed in ambulatory cancer patients receiving palliative radiation therapy may be suitable for this purpose but has not been tested in a palliative care setting. Objective: Our aim was to evaluate the prognostic accuracy of the NRF score in patients referred to a palliative care outpatient clinic at a comprehensive cancer center. Methods: We conducted a retrospective chart review of NRF scores and survival in 300 consecutive, newly referred patients. Measurements included primary cancer type, extent of disease, Karnofsky Performance Scale (KPS) score, and survival duration after first visit. One point was allocated each for cancer other than breast cancer, metastases other than bone, and low KPS score. Results: Of 300 patients, 236 (79%) had advanced disease. Of those 236, 212 (90%) had a cancer other than breast cancer, 180 (76%) had metastatic disease in sites other than bone, and 64 (27%) had a KPS score <70%. During the 2-year follow-up, 221 (94%) patients died, with overall median survival of 4.9 months (95% confidence interval, 3.9–6.1 months). NRF scores of 0 to 1, 2, and 3 split the sample into subgroups with highly significantly different survival among the groups, with medians 9.0, 4.6, and 2.1 months, respectively (Wilcoxon test χ2=43.9, degrees of freedom [df] 2, p<0.0001). A simple parametric model was fit to determine the probability of subgroup members surviving to a certain number of months. Conclusions: In cancer patients referred to palliative care earlier in their disease trajectory, the NRF score may be a useful prognostic tool. Further validation in other palliative care populations is needed. PMID:24871990

  15. The Role of Play in Children’s Palliative Care

    PubMed Central

    Boucher, Sue; Downing, Julia; Shemilt, Rise

    2014-01-01

    Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increases proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play. PMID:27417481

  16. [Palliative Care for Rectal Cancer Complicated with Gastric Cancer].

    PubMed

    Furukawa, Takeshi; Takahashi, Hitoshi; Tanaka, Kei; Muto, Takaaki

    2015-11-01

    Medical advancements have led to an increase in the number of elderly people. However, standard treatments may sometimes be difficult to use in elderly people. Here, we report the case of an elderly patient with rectal and gastric cancer who refused radical surgery. The patient was an 83-year-old man who had type-2 diabetes, hypertension, hyperuricemia, mitral valve regurgitation, and mild dementia. Furthermore, he was blind in both eyes owing to glaucoma. He first visited our hospital in 2005. In 2010, he was diagnosed with anemia, but he refused a thorough examination; however, he did consent to take iron supplements. In July 2011, he consulted our hospital for symptoms of frequent diarrhea, and agreed to an examination. After colonoscopy, he was diagnosed with rectal cancer that was becoming obstructive. There were no metastases to other organs, but he was also diagnosed with gastric cancer. As he and his family refused radical surgery, a stoma was constructed. After the operation, he received palliative care but died in September 2013. PMID:26805335

  17. Day Care Hopping: Stabilizing Day Care Options for Low-Income Mothers through Subsidies

    ERIC Educational Resources Information Center

    Drentea, Patricia; Durham, Suzanne; Mwaria, Mercie; Norman, Emily; Xi, Juan

    2004-01-01

    We examined how to allocate a subsidy to low-income women that would stabilize children in day care at a Young Women's Christian Association (YWCA). The subsidy is to alleviate day care hopping (i.e. when parents move from day care to day care) leaving unpaid tuitions at each place. Day care hopping is really a survival strategy for the working…

  18. Palliative Care Services for Indian Migrants in Australia: Experiences of the Family of Terminally Ill Patients

    PubMed Central

    Shanmugasundaram, Sujatha; O'Connor, Margaret

    2009-01-01

    Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups. PMID:20606861

  19. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    PubMed

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions. PMID:27557917

  20. Quality palliative care for cancer and dementia in five European countries: some common challenges

    PubMed Central

    Davies, Nathan; Maio, Laura; van Riet Paap, Jasper; Mariani, Elena; Jaspers, Birgit; Sommerbakk, Ragni; Grammatico, Daniela; Manthorpe, Jill; Ahmedzai, Sam; Vernooij-Dassen, Myrra; Iliffe, Steve

    2013-01-01

    Objectives There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. PMID:24131061

  1. Adjusting Bowel Regimens When Prescribing Opioids in Women Receiving Palliative Care in the Acute Care Setting.

    PubMed

    Gonzales, Lucia K; Delmastro, Margaret A; Boyd, Denise M; Sterling, Melvyn L; Aube, Patricia A; Le, Rosemary N; Traucht, Lisa; Quinal, Leonida R; Georges, Jane M; Glaser, Dale N

    2016-08-01

    In palliative medicine, constipation is the third most common symptom after pain and anorexia, causing some patients to discontinue opioid therapy. Women experience higher incidence of constipation than men. The prevalence of infrequent bowel movements (<3 times/wk) and adherence to an established bowel regimen among women receiving opioids were studied. Referral to the palliative care team decreased the prevalence of infrequent bowel movements from 72% to 45%, and algorithm adherence increased from 38% to 78%. Education of oncology nurses decreased the prevalence of infrequent bowel movements among patients with cancer from 71% to 60%, and algorithm adherence increased from 0% to 10%. Patients benefit from stool softeners and stimulants when receiving opioids. PMID:25964648

  2. Interdisciplinary educational approaches to promote team-based geriatrics and palliative care.

    PubMed

    Howe, Judith L; Witt Sherman, Deborah

    2006-01-01

    Despite the increasing public demand for enhanced care of older patients and those with life-threatening illness, health professionals have had limited formal education in geriatrics and palliative care. Furthermore, formal education in interdisciplinary team training is limited. In order to remedy this situation, proactive interventions are being undertaken so that education and training in palliative care is being embedded within the training of physicians, nurses, social workers, as well as other associated health team members. This article discusses various educational approaches to interdisciplinary team-based geriatric and palliative care, highlighting the interdisciplinary didactic and clinical educational opportunities offered by an Interprofessional Palliative Care Fellowship Program, as well as an Associated Health Training Program at the Geriatrics Research, Education, and Clinical Center, Bronx Veteran's Medical Center. The article further describes the educational initiatives in palliative care offered through the Veteran's Integrated Service Network (VISN). Innovative educational strategies are discussed within the context of the existing literature on interdisciplinary health care team training. PMID:16446268

  3. Designing Clinically Valuable Telehealth Resources: Processes to Develop a Community-Based Palliative Care Prototype

    PubMed Central

    Morgan, Deidre Diane; Swetenham, Kate; To, Timothy Hong Man; Currow, David Christopher

    2014-01-01

    Background Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype. PMID:25189279

  4. The Dual Rounding Model: Forging Therapeutic Alliances 
in Oncology and Palliative Care.

    PubMed

    Baxley, Carey E

    2016-04-01

    Inpatients with solid tumors at Duke University Hospital in Durham, NC, are cared for in a dynamic integrated care model that incorporates medical oncology and palliative care. This has profound implications for patients, their loved ones, medical and surgical staff, and oncology nurses. As a nurse with less than three years of experience, my participation in a setting that uses the Dual Rounding Model has accelerated my professional and personal development. During a typical shift, I am an oncology nurse, a palliative care nurse, and a hospice nurse.
. PMID:26991719

  5. Paramedics' perceptions of their role in palliative care: analysis of focus group transcripts.

    PubMed

    Lord, Bill; Récoché, Katrina; O'Connor, Margaret; Yates, Patsy; Service, Melinda

    2012-01-01

    Paramedics play an important role in out-of-hospital health care. They provide unscheduled care, assisting both patients with minor injuries and those experiencing life-threatening emergencies. Increasingly, paramedics are called on to manage chronic and complex health needs, including symptom relief for patients at the end of life. However, paramedics may not be well prepared to offer palliative care, as practice guidelines and education tend to focus on the management of acute medical emergencies and major trauma. Emergency medical services that employ paramedics rarely have practice guidelines or protocols that deal specifically with palliative care. PMID:22582470

  6. Day Care Research: What Is the Treatment?

    ERIC Educational Resources Information Center

    Sugar, Judith

    The purposes of this paper are to consider how the prototypical research design of day care studies may unjustifiably emphasize day care as the effective factor or "treatment" in children's development, and to describe processes by which the family or some interaction between the family and day care may also affect preschoolers' development. The…

  7. Family Day Care Provider Support Services Directory.

    ERIC Educational Resources Information Center

    Galblum, Trudi W.; Boyer-Shesol, Cathy

    This directory profiles numerous organizational support services for family day care providers in the Kansas City metropolitan area. The first chapter, on operating a family day care home, concerns licensing and registration, the processes of starting and marketing a day care business, zoning and municipal regulation, and substitute providers. The…

  8. Cannabis in palliative medicine: improving care and reducing opioid-related morbidity.

    PubMed

    Carter, Gregory T; Flanagan, Aaron M; Earleywine, Mitchell; Abrams, Donald I; Aggarwal, Sunil K; Grinspoon, Lester

    2011-08-01

    Unlike hospice, long-term drug safety is an important issue in palliative medicine. Opioids may produce significant morbidity. Cannabis is a safer alternative with broad applicability for palliative care. Yet the Drug Enforcement Agency (DEA) classifies cannabis as Schedule I (dangerous, without medical uses). Dronabinol, a Schedule III prescription drug, is 100% tetrahydrocannabinol (THC), the most psychoactive ingredient in cannabis. Cannabis contains 20% THC or less but has other therapeutic cannabinoids, all working together to produce therapeutic effects. As palliative medicine grows, so does the need to reclassify cannabis. This article provides an evidence-based overview and comparison of cannabis and opioids. Using this foundation, an argument is made for reclassifying cannabis in the context of improving palliative care and reducing opioid-related morbidity. PMID:21444324

  9. Palliative care, public health and justice: setting priorities in resource poor countries.

    PubMed

    Blinderman, Craig

    2009-12-01

    Many countries have not considered palliative care a public health problem. With limited resources, disease-oriented therapies and prevention measures take priority. In this paper, I intend to describe the moral framework for considering palliative care as a public health priority in resource-poor countries. A distributive theory of justice for health care should consider integrative palliative care as morally required as it contributes to improving normal functioning and preserving opportunities for the individual. For patients requiring terminal care, we are guided less by principles of justice and more by the duty to relieve suffering and society's commitment to protecting the professional's obligation to uphold principles of beneficence, compassion and non-abandonment. A fair deliberation process is necessary to allow these strong moral commitments to serve as reasons when setting priorities in resource poor countries. PMID:19811525

  10. [Nursing in palliative care to children and adolescents with cancer: integrative literature review].

    PubMed

    da Costa, Thailly Faria; Ceolim, Maria Filomena

    2010-12-01

    Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering. PMID:21805890

  11. Circles of care: should community development redefine the practice of palliative care?

    PubMed

    Abel, Julian; Walter, Tony; Carey, Lindsay B; Rosenberg, John; Noonan, Kerrie; Horsfall, Debbie; Leonard, Rosemary; Rumbold, Bruce; Morris, Deborah

    2013-12-01

    Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike. PMID:24950517

  12. Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

    PubMed Central

    Tuffrey-Wijne, Irene; McLaughlin, Dorry; Curfs, Leopold; Dusart, Anne; Hoenger, Catherine; McEnhill, Linda; Read, Sue; Ryan, Karen; Satgé, Daniel; Straßer, Benjamin; Westergård, Britt-Evy; Oliver, David

    2015-01-01

    Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice. PMID:26346181

  13. “Not the ‘Grim Reaper Service’”: An Assessment of Provider Knowledge, Attitudes, and Perceptions Regarding Palliative Care Referral Barriers in Heart Failure

    PubMed Central

    Kavalieratos, Dio; Mitchell, Emma M.; Carey, Timothy S.; Dev, Sandesh; Biddle, Andrea K.; Reeve, Bryce B.; Abernethy, Amy P.; Weinberger, Morris

    2014-01-01

    Background Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. Methods and Results We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF‐related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Conclusions Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease‐related burden. PMID:24385453

  14. Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.

    PubMed

    Håkanson, Cecilia; Sandberg, Jonas; Ekstedt, Mirjam; Kenne Sarenmalm, Elisabeth; Christiansen, Mats; Öhlén, Joakim

    2016-07-01

    Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions. PMID:25994318

  15. Pharmacological treatments for fatigue associated with palliative care: executive summary of a Cochrane Collaboration systematic review

    PubMed Central

    Mochamat; Cuhls, Henning; Peuckmann‐Post, Vera; Minton, Ollie; Stone, Patrick; Radbruch, Lukas

    2016-01-01

    Abstract Background In palliative care patients, fatigue can be severely debilitating and is often not counteracted with rest, thereby impacting daily activity and quality of life. Further complicating issues are the multidimensionality, subjective nature and lack of a consensus definition of fatigue. The review aimed to evaluate the efficacy of pharmacological treatments for fatigue in palliative care, with a focus on patients at an advanced stage of disease, including patients with cancer and other chronic diseases. Methods We considered randomized controlled trials concerning adult palliative care with a focus on pharmacological treatment of fatigue compared with placebo, application of two drugs, usual care or a non‐pharmacological intervention. The primary outcome had to be non‐specific fatigue (or related terms such as asthenia). We searched the CENTRAL, MEDLINE, PsycINFO and EMBASE, and a selection of cancer journals up to 28 April 2014. Two review authors independently assessed trial quality and extracted the data. Results We screened 1645 publications of which 45 met the inclusion criteria. In total, we analysed data from 18 drugs and 4696 participants. There was a very high degree of statistical and clinical heterogeneity in the trials. Meta‐analysis of data was possible for modafinil, pemoline, and methylphenidate. Conclusions Due to the limited evidence, we cannot recommend a specific drug for the treatment of fatigue in palliative care patients. Some drugs, which may be beneficial for the treatment of fatigue associated with palliative care such as amantadine, methylphenidate, and modafinil, should be further researched. PMID:27066315

  16. An evaluation of aromatherapy massage in palliative care.

    PubMed

    Wilkinson, S; Aldridge, J; Salmon, I; Cain, E; Wilson, B

    1999-09-01

    The use of complementary therapies, such as massage and aromatherapy massage, is rising in popularity among patients and healthcare professionals. They are increasingly being used to improve the quality of life of patients, but there is little evidence of their efficacy. This study assessed the effects of massage and aromatherapy massage on cancer patients in a palliative care setting. We studied 103 patients, who were randomly allocated to receive massage using a carrier oil (massage) or massage using a carrier oil plus the Roman chamomile essential oil (aromatherapy massage). Outcome measurements included the Rotterdam Symptom Checklist (RSCL), the State-Trait Anxiety Inventory (STAI) and a semi-structured questionnaire, administered 2 weeks postmassage, to explore patients' perceptions of massage. There was a statistically significant reduction in anxiety after each massage on the STAI (P < 0.001), and improved scores on the RSCL: psychological (P < 0.001), quality of life (P < 0.01), severe physical (P < 0.05), and severe psychological (P < 0.05) subscales for the combined aromatherapy and massage group. The aromatherapy group's scores improved on all RSCL subscales at the 1% level of significance or better, except for severely restricted activities. The massage group's scores improved on four RSCL subscales but these improvements did not reach statistical significance. Massage with or without essential oils appears to reduce levels of anxiety. The addition of an essential oil seems to enhance the effect of massage and to improve physical and psychological symptoms, as well as overall quality of life. PMID:10659113

  17. Mapping the progress and impacts of public health approaches to palliative care: a scoping review protocol

    PubMed Central

    Archibald, Daryll; Patterson, Rebecca; Haraldsdottir, Erna; Hazelwood, Mark; Fife, Shirley; Murray, Scott A

    2016-01-01

    Introduction Public health palliative care is a term that can be used to encompass a variety of approaches that involve working with communities to improve people's experience of death, dying and bereavement. Recently, public health palliative care approaches have gained recognition and momentum within UK health policy and palliative care services. There is general consensus that public health palliative care approaches can complement and go beyond the scope of formal service models of palliative care. However, there is no clarity about how these approaches can be undertaken in practice or how evidence can be gathered relating to their effectiveness. Here we outline a scoping review protocol that will systematically map and categorise the variety of activities and programmes that could be classified under the umbrella term ‘public health palliative care’ and highlight the impact of these activities where measured. Methods and analysis This review will be guided by Arksey and O'Malley's scoping review methodology and incorporate insights from more recent innovations in scoping review methodology. Sensitive searches of 9 electronic databases from 1999 to 2016 will be supplemented by grey literature searches. Eligible studies will be screened independently by two reviewers using a data charting tool developed for this scoping review. Ethics and dissemination This scoping review will undertake a secondary analysis of data already collected and does not require ethical approval. The results will facilitate better understanding of the practical application of public health approaches to palliative care, the impacts these activities can have and how to build the evidence base for this work in future. The results will be disseminated through traditional academic routes such as conferences and journals and also policy and third sector seminars. PMID:27417201

  18. Dental Care Every Day: A Caregiver's Guide

    MedlinePlus

    ... Every Day: A Caregiver's Guide Dental Care Every Day: A Caregiver's Guide Main Content Getting Started Three ... regularly. Back to Top Step 1. Brush Every Day Angle the brush at the gumline and brush ...

  19. Readmissions in Cancer Patients After Receiving Inpatient Palliative Care in Taiwan

    PubMed Central

    Chang, Hsiao-Ting; Chen, Chun-Ku; Lin, Ming-Hwai; Chou, Pesus; Chen, Tzeng-Ji; Hwang, Shinn-Jang

    2016-01-01

    Abstract 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

  20. [Nursing care needs of the caregiver of persons under palliative care].

    PubMed

    Fonseca, João Vicente César; Rebelo, Teresa

    2011-01-01

    The purpose was to identify needs for nursing care of caregiver of the person in the terminal stage and nursing interventions, using a systematic review of the literature. A research in EBSCO and ProQuest and sought Full Text scientific articles, published between 1998 and 2008, using the following keywords: "Palliative care", "Family", "Nursing" and "Needs" was made. The method PI[C]OD was used to select 14 items of total 77. The care needs the person in the terminal stage are: communication, relationship of trust and security, recognition and operationalization of desires; preparation for mourning; needs for information, training, involvement in care, emotional needs, spiritual needs and resting needs. It was concluded that the family has different needs that require personal intervention of the nurse, through the establishment of a trust relationship. PMID:21468507

  1. Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals

    PubMed Central

    2013-01-01

    Background The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and non-malignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. Methods Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. Results The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05). Conclusion The paper highlights elevated levels of burden experienced by patients with

  2. Challenges to participation in paediatric palliative care research: a review of the literature.

    PubMed

    Tomlinson, Deborah; Bartels, Ute; Hendershot, Eleanor; Constantin, Julie; Wrathall, Glynis; Sung, Lillian

    2007-07-01

    It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team. PMID:17901103

  3. A means to an end: a web-based client management system in palliative care.

    PubMed

    O'Connor, Margaret; Erwin, Trudy; Dawson, Linda

    2009-03-01

    Home-based palliative care (hospice) services require comprehensive and fully integrated information systems to develop and manage the various aspects of their business, incorporating client data and management information. These systems assist in maintaining the quality of client care as well as improved management efficiencies. This article reports on a large not-for-profit home-based palliative care service in Australia, which embarked on a project to develop an electronic data management system specifically designed to meet the needs of the palliative care sector. This web-based client information management system represents a joint venture between the organization and a commercial company and has been a very successful project. PMID:19218311

  4. Usefulness of Palliative Care to Complement the Management of Patients on Left Ventricular Assist Devices.

    PubMed

    Luo, Nancy; Rogers, Joseph G; Dodson, Gwen C; Patel, Chetan B; Galanos, Anthony N; Milano, Carmelo A; O'Connor, Christopher M; Mentz, Robert J

    2016-09-01

    Within the last decade, advancements in left ventricular assist device therapy have allowed patients with end-stage heart failure (HF) to live longer and with better quality of life. Like other life-saving interventions, however, there remains the risk of complications including infections, bleeding episodes, and stroke. The candidate for left ventricular assist device therapy faces complex challenges going forward, both physical and psychological, many of which may benefit from the application of palliative care principles by trained specialists. Despite these advantages, palliative care remains underused in many advanced HF programs. Here, we describe the benefits of palliative care, barriers to use within HF, and specific applications to the integrated care of patients on mechanical circulatory support. PMID:27474339

  5. An Overview of the ACE Project—Advocating for Clinical Excellence: Transdisciplinary Palliative Care Education

    PubMed Central

    Otis-Green, Shirley; Ferrell, Betty; Spolum, Maren; Uman, Gwen; Mullan, Patricia; Baird, Reverend Pamela; Grant, Marcia

    2009-01-01

    Background Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area. Methods A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program. Results To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills. Conclusions The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site (www.cityofhope.org/ACEproject) for additional course information. PMID:19431028

  6. Quebec proposition of Medical Aid in Dying: a palliative care perspective.

    PubMed

    Vachon, Mélanie

    2013-01-01

    The government of Quebec (Canada) is poised to adopt a proposition to legalize euthanasia in the form of "Medical Aid in Dying," which presents a new option for end-of-life care. This proposition arouses concerns among palliative care providers. The aim of this article is to provide a palliative care perspective on Quebec's proposition to legalize euthanasia. Based on the epistemological and methodological framework of critical theory, the following three questions are raised: First, in Quebec's current state of the law, is it possible to relieve the suffering of end-of-life patients? Second, can the Quebec proposition to legalize euthanasia in specific circumstances be harmful? Third, is the Quebec proposition on euthanasia compatible with palliative care and social values? In conclusion, recommendations and alternatives to the current Quebec proposition are suggested. PMID:24125960

  7. Failing the failing heart: a review of palliative care in heart failure.

    PubMed

    Shah, Ankit B; Morrissey, Ryan P; Baraghoush, Afshan; Bharadwaj, Parag; Phan, Anita; Hamilton, Michele; Kobashigawa, Jon; Schwarz, Ernst R

    2013-01-01

    Heart failure (HF) is the most common reason for hospital admission for patients older than 65 years. With an aging population and improving survival in heart failure patients, the number of people living with HF continues to grow. As this population increases, the importance of treating symptoms of fatigue, dyspnea, pain, and depression that diminish the quality of life in HF patients becomes increasingly important. Palliative care has been shown to help alleviate these symptoms and improve patients' satisfaction with the care they receive. Despite this growing body of evidence, palliative care consultation remains underutilized and is not standard practice in the management of HF. With an emphasis on communication, symptom management, and coordinated care, palliative care provides an integrated approach to support patients and families with chronic illnesses. Early communication with patients and families regarding the unpredictable nature of HF and the increased risk of sudden cardiac death enables discussions around advanced care directives, health care proxies, and deactivation of permanent pacemakers or implantable cardioverter defibrillators. Cardiologists and primary care physicians who are comfortable initiating these discussions are encouraged to do so; however, many fear destroying hope and are uncertain how to discuss end-of-life issues. Thus, in order to facilitate these discussions and establish an appropriate relationship, we recommend that patients and families be introduced to a palliative care team at the earliest appropriate time after diagnosis. PMID:23651985

  8. End-of-Life Decisions and Palliative Care in Advanced Heart Failure.

    PubMed

    Meyers, Deborah E; Goodlin, Sarah J

    2016-09-01

    Advanced heart failure (HF) therapies are focused on extending life and improving function. In contrast, palliative care is a holistic approach that focuses on symptom alleviation and patients' physical, psychosocial, and spiritual needs. HF clinicians can integrate palliative care strategies by incorporating several important components of planning and decision-making for HF patients. Future care planning (FCP) for HF patients should incorporate the basic tenets of shared decision-making (SDM). These include understanding the patient's perspective and care preferences, articulating what is medically feasible, and integrating these considerations into the overall care plan. Use of defined triggers for FCP can stimulate important patient-caregiver conversations. Guidelines advocate an annual review of HF status and future care preferences. Advance directives are important for any individual with a chronic, life-limiting illness and should be integrated into FCP. Nevertheless, use of advance directives by HF patients is extremely low. Consideration of illness trajectories and risk-scoring tools might facilitate prognostication and delivery of appropriate HF care. Decisions about heart transplantation or left ventricular assist device implantation should include planning for potential complications associated with these therapies. Such decisions also should include a discussion of palliative management, as an alternative to intervention and also as an option for managing symptoms or adverse events after intervention. Palliative care, including FCP and SDM, should be integrated into the course of all patients with advanced HF. Clinicians who provide HF care should acquire the skills necessary for conducting FCP and SDM discussions. PMID:27568873

  9. End of Life Care Policy for the Dying: Consensus Position Statement of Indian Association of Palliative Care

    PubMed Central

    Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh

    2014-01-01

    EXECUTIVE SUMMARY Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education. PMID:25191002

  10. Clinical supervision in the palliative care team setting: a concrete approach to team wellness.

    PubMed

    Edmonds, Kyle P; Yeung, Heidi N; Onderdonk, Christopher; Mitchell, William; Thornberry, Kathryn

    2015-03-01

    Clinical supervision is a structured, case-based approach to learning that is used most often in the mental health field. An established palliative care consultation service at a large, academic medical center implemented a modified clinical supervision model in an effort to improve team members' awareness of their own emotions and the way those emotions impact behavior during, primarily, clinical encounters. This report discusses clinical supervision in detail and, by way of a case, illustrates the power of this intervention as a source of self-care and a concrete approach to managing palliative care team well-being. PMID:25517027

  11. Validation of a New Instrument for Self-Assessment of Nurses' Core Competencies in Palliative Care

    PubMed Central

    Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth

    2014-01-01

    Competence can be seen as a prerequisite for high quality nursing in clinical settings. Few research studies have focused on nurses' core competencies in clinical palliative care and few measurement tools have been developed to explore these core competencies. The purpose of this study was to test and validate the nurses' core competence in palliative care (NCPC) instrument. A total of 122 clinical nurse specialists who had completed a postbachelor program in palliative care at two university colleges in Norway answered the questionnaire. The initial analysis, with structural equation modelling, was run in Mplus 7. A modified confirmatory factor analysis revealed the following five domains: knowledge in symptom management, systematic use of the Edmonton symptom assessment system, teamwork skills, interpersonal skills, and life closure skills. The actual instrument needs to be tested in a practice setting with a larger sample to confirm its usefulness. The instrument has the potential to be used to refine clinical competence in palliative care and be used for the training and evaluation of palliative care nurses. PMID:25132989

  12. Reaching out to Ray: delivering palliative care services to a homeless person in Melbourne, Australia.

    PubMed

    MacWilliams, Judy; Bramwell, Michael; Brown, Sally; O'Connor, Margaret

    2014-02-01

    Most terminally ill people express a preference for dying at home. Within established models of palliative care, achieving death at home is a particular challenge for homeless people. This paper describes a quality-improvement project undertaken by a community-based palliative care service in Melbourne, Australia, to understand homeless people's palliative care needs and the challenges that workers face. Six semi-structured interviews with workers in hospital and community-based settings were undertaken and a case study documented. The results were used to initiate discussion about how policy and protocols for the community-based palliative care service might serve this population more effectively. The findings confirmed that homeless people have complex psychosocial and medical needs. They may be periodically uncontactable or living in unsafe settings, experience isolation from social support networks, and have issues of compliance with treatment protocols exacerbated by mental health problems and/or substance abuse. Service providers had particular challenges in meeting the palliative care needs of homeless people. A flexible, compassionate, and coordinated response is required, and more work is needed to explore how the needs of this particular group can be met. PMID:24577214

  13. Validation of a new instrument for self-assessment of nurses' core competencies in palliative care.

    PubMed

    Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth

    2014-01-01

    Competence can be seen as a prerequisite for high quality nursing in clinical settings. Few research studies have focused on nurses' core competencies in clinical palliative care and few measurement tools have been developed to explore these core competencies. The purpose of this study was to test and validate the nurses' core competence in palliative care (NCPC) instrument. A total of 122 clinical nurse specialists who had completed a postbachelor program in palliative care at two university colleges in Norway answered the questionnaire. The initial analysis, with structural equation modelling, was run in Mplus 7. A modified confirmatory factor analysis revealed the following five domains: knowledge in symptom management, systematic use of the Edmonton symptom assessment system, teamwork skills, interpersonal skills, and life closure skills. The actual instrument needs to be tested in a practice setting with a larger sample to confirm its usefulness. The instrument has the potential to be used to refine clinical competence in palliative care and be used for the training and evaluation of palliative care nurses. PMID:25132989

  14. Impact of Death Work on Self: Existential and Emotional Challenges and Coping of Palliative Care Professionals.

    PubMed

    Chan, Wallace Chi Ho; Tin, Agnes Fong; Fong, Agnes; Wong, Karen Lok Yi; Tse, Doris Man Wah; Lau, Kam Shing; Chan, Lai Ngor

    2016-02-01

    Palliative care professionals, such as social workers, often work with death and bereavement. They need to cope with the challenges on "self" in working with death, such as coping with their own emotions and existential queries. In this study, the authors explore the impact of death work on the self of palliative care professionals and how they perceive and cope with the challenges of self in death work by conducting a qualitative study. Participants were recruited from the palliative care units of hospitals in Hong Kong. In-depth interviews were conducted with 22 palliative care professionals: five physicians, 11 nurses, and six social workers. Interviews were transcribed to text for analysis. Emotional challenges (for example, aroused emotional distress from work) and existential challenges (for example, shattered basic assumptions on life and death) were identified as key themes. Similarly, emotional coping (for example, accepting and managing personal emotions) and existential coping (for example, rebuilding and actualizing life-and-death assumptions) strategies were identified. This study enhances the understanding of how palliative care professionals perceive and cope with the challenges of death work on the self. Findings may provide insights into how training can be conducted to enhance professionals' self-competence in facing these challenges. PMID:26946884

  15. Palliative care for all? A review of the evidence in community hospitals.

    PubMed

    Steers, Julie; Brereton, Louise; Ingleton, Christine

    2007-08-01

    The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the U.K. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting. PMID:18018819

  16. Where there is no morphine: The challenge and hope of palliative care delivery in Tanzania

    PubMed Central

    Dean, Mervyn; Hartwig, Kari; Mmbando, Paul Z.; Sayed, Abduraoof; de Vries, Elma

    2014-01-01

    Abstract Background In Tanzania, a country of 42 million, access to oral morphine is rare. Aim To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain. Setting One hundred and forty-five cancer patients were included from 13 rural hospitals spread across Tanzania. Method A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than five years’ palliative care experience and no access to strong opioids. Results Patients and their family caregivers identified statistically significant (p < 0.001) improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefits from palliative care but also their great distress when ‘bad cases’ arose who would likely benefit only from oral morphine. Conclusion People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefits even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services. PMID:26245417

  17. [Assessment of the spiritual needs of patients in palliative care].

    PubMed

    Hajnová Fukasová, E; Bužgová, R; Feltl, D

    2015-01-01

    The appraisal and the right diagnostics of all needs and problems of patients, including the spiritual needs, are unavoidable for increase of the quality of the all-embracing nursing care. In the case of satisfying of the needs of the patients, it is important to have view the person as a unity of thebody and the soul. Identification and satisfying of the spiritual needs are not uncomplicated; moreover, spirituality does not have a target--ed and clear definition. In the palliative care, the solution and saturation of spiritual needs have a great priority, and it can be the key aspect of psychological activity. Also, medical experts are becoming aware of the meaning of spirituality as the part of psychological contentment more and more. Smaller importance is attached to measurement of spiritual needs, and in many medical institutions ends at the case history with the questions: "Are you a believer?", "Do you have any spiritual needs?". Spirituality and religion are very personal matters of every human. Many patients turn to religion to find answers to difficult questions while others find support through the spiritual beliefs outside the scope of organized religion. Mistaking of meanings of the spirituality and religionism can lead to many misunderstandings. The basic condition for the right diagnostics and satisfaction of spiritual needs are the definition of the used terms and using of standardized measurement devices in the clinical praxis. The target of summarizing study was to define the term of spirituality, to describe a lot of measurement devices these are suitable for the evaluation of human spiritual needs. For methodology for acquiring of the results of research works that are concerned with the questions of spiritual needs in case of the incurable patients, the following databases were used (2005-2013): EBSCO, Bibliographia Medica Čechoslovaca, Google Scholar, Solen - www.solen.cz, Profese on-line as the source of the data. The choice of studies were

  18. Study of Nurses’ Knowledge about Palliative Care: A Quantitative Cross-sectional Survey

    PubMed Central

    Prem, Venkatesan; Karvannan, Harikesavan; Kumar, Senthil P; Karthikbabu, Surulirajan; Syed, Nafeez; Sisodia, Vaishali; Jaykumar, Saroja

    2012-01-01

    Context: Studies have documented that nurses and other health care professionals are inadequately prepared to care for patients in palliative care. Several reasons have been identified including inadequacies in nursing education, absence of curriculum content related to pain management, and knowledge related to pain and palliative care. Aims: The objective of this paper was to assess the knowledge about palliative care amongst nursing professionals using the palliative care knowledge test (PCKT). Settings and Design: Cross-sectional survey of 363 nurses in a multispecialty hospital. Materials and Methods: The study utilized a self-report questionnaire- PCKT developed by Nakazawa et al., which had 20 items (statements about palliative care) for each of which the person had to indicate ‘correct’, ‘incorrect’, or ‘unsure.’ The PCKT had 5 subscales (philosophy- 2 items, pain- 6 items, dyspnea- 4 items, psychiatric problems- 4 items, and gastro-intestinal problems- 4 items). Statistical Analysis Used: Comparison across individual and professional variables for both dimensions were done using one-way ANOVA, and correlations were done using Karl-Pearson's co-efficient using SPSS version 16.0 for Windows. Results: The overall total score of PCKT was 7.16 ± 2.69 (35.8%). The philosophy score was 73 ± .65 (36.5%), pain score was 2.09 ± 1.19 (34.83%), dyspnea score was 1.13 ± .95 (28.25%), psychiatric problems score was 1.83 ± 1.02 (45.75%), and gastro-intestinal problems score was 1.36 ± .97 (34%). (P = .00). The female nurses scored higher than their male counterparts, but the difference was not significant (P > .05). Conclusions: Overall level of knowledge about palliative care was poor, and nurses had a greater knowledge about psychiatric problems and philosophy than the other aspects indicated in PCKT. PMID:23093828

  19. Developing Interdisciplinary Skills and Professional Confidence in Palliative Care Social Work Students

    ERIC Educational Resources Information Center

    Supiano, Katherine P.; Berry, Patricia H.

    2013-01-01

    Research suggests that better educational preparation is necessary to assure that health care social workers have the competencies essential for high quality interdisciplinary palliative care practice. This study is a qualitative evaluation of those elements contributing to competence and confidence in interdisciplinary practice skills of second…

  20. Interdisciplinary Educational Approaches to Promote Team-Based Geriatrics and Palliative Care

    ERIC Educational Resources Information Center

    Howe, Judith L.; Sherman, Deborah Witt

    2006-01-01

    Despite the increasing public demand for enhanced care of older patients and those with life-threatening illness, health professionals have had limited formal education in geriatrics and palliative care. Furthermore, formal education in interdisciplinary team training is limited. In order to remedy this situation, proactive interventions are being…