... aspirin, naproxen (Aleve) and ibuprofen (Advil, Motrin), diclofenac Narcotics or opioids , such as codeine, morphine, oxycodone, or ... stools, can be treated. Some people who take narcotics for pain become dependent on them. If you ...
Heiskanen, Tarja; Hamunen, Katri; Hirvonen, Outi
Palliative pain management is usually successful, if the medication is strengthened in a stepwise manner in accordance with pain intensity, and initiation of a strong opioid is not delayed. Finding of a sufficiently effective dose of the opioid drug with simultaneous management of adverse effects requires continuous pain assessment and patient monitoring. In many cases it is possible to enhance analgesia by supplementing the medication with an antidepressant or an antiepileptic along with the opioid and paracetamol or the analgesic. Palliative radiotherapy will relieve tissue injury pain caused by bone metastases and soft tissue tumors as well as pain due to the possible nerve entrapments caused by them.
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.
... Patients and Families Take the Quiz What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh- ... more control over your care. A Partnership of Palliative Care Team, Patient and Family Palliative care teams ...
... Looking for Health Lessons? Visit KidsHealth in the Classroom What Other Parents Are Reading Is Your Child ... a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care ...
Thompson, Lindsay A; Meinert, Elizabeth; Baker, Kimberly; Knapp, Caprice
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.
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the ‘top 10’ priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future. PMID:28386399
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the 'top 10' priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future.
Hemming, Laureen; Maher, David
Pain is the major source of anxiety and distress at the end of life, particularly in cases of end-stage cancer. However, pain management is not always effective or effectively implemented. This article identifies several barriers to effective pain relief in terminal cancer--the complexity of pain; difficulties in physical, emotional and spiritual assessment; difficulties in the delivery of medication--that challenge the skills of all professionals involved in palliative care. There are no simple answers, but awareness of the breadth of the issues may help focus nurses' minds on the patient in every encounter.
Physical pain is well analysed by medical science, but still often neglected by the practicians. It is entangled with moral suffering at the end of life. The distinction between these two fundamental experiences is difficult but necessary for the care of patients. The concept of palliative care is far from being integrated by health professionals as well as by everybody, because it questions our finitude, the signification of life and human solidarity.
... Feeding Your 1- to 2-Year-Old Palliative Care KidsHealth > For Parents > Palliative Care A A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...
Soebadi, R D; Tejawinata, S
Indonesia is a large archipelago with an estimated 203,000-365,400 new cancer cases a year. Most cases present in the advanced stage. Pain is the chief complaint in 89% of the patients of the palliative care unit at Dr. Soetomo hospital. The program is a community-based, family-oriented, and culturally adapted home care, widely applicable throughout the country. The service and medication should be affordable, simple, and available. The WHO three-step ladder has been adopted as the method of choice in cancer pain relief. Facilities supportive for the program are the existing health-care delivery system and non-formal support system (Indonesian Cancer Foundation and Organization for Family Welfare Promotion, PKK). The chief constraints for program implementation are the geographical and population problems, lack of resources and funding for the training of health-care workers, and limited availability of oral morphine.
Kumar, Senthil P
Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model. PMID:21633623
Geoghan, Darlene A
Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life-altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non-pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones.
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 ...
Johnston, Donna L.; Hentz, Tracy A.; Friedman, Debra L.
Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palliative care, but continued research into this important area of pediatrics will lead to improvements in the care of children with life-threatening illnesses. PMID:23118638
Chang, Victor T; Sorger, Brooke; Rosenfeld, Kenneth E; Lorenz, Karl A; Bailey, Amos F; Bui, Trinh; Weinberger, Lawrence; Montagnini, Marcos
Severe pain is highly prevalent, with rates of 40% to 70% in patients with advanced cancer, liver disease, heart failure, human immunodeficiency virus, and renal failure. Wide variations in pain assessment and reporting methods and the measurement of multiple symptoms should be addressed in future studies. Regarding psychological approaches, determining whether hypnotherapy or other individual psychotherapeutic interventions reduce pain and/or psychological distress in a palliative care population is difficult. Interest is increasing in the concept of demoralization syndromes and the role of posttraumatic stress disorder in modulating responses to pain at the end of life. We review evidence from multiple studies that the use of rehabilitative therapy improves functional status and pain control among patients with advanced cancer, and we raise the possibility that rehabilitation therapy will be helpful in patients with other advanced diseases. We summarize ongoing clinical trials of electronic order sets, clinical care pathways, and care management pathways to improve pain management in palliative care. Wagner's Chronic Illness Model provides a way of analyzing how healthcare systems can be changed to provide adequate and continuing pain management in palliative care. Much work remains to ensure that pain is recognized, treated, and monitored effectively.
Klein, Carsten; Lang, Ute; Bükki, Johannes; Sittl, Reinhard; Ostgathe, Christoph
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
Kumar, Senthil P; Saha, Sourov
Pain relief is a major goal for palliative care in India so much that most palliative care interventions necessarily begin first with pain relief. Physical therapists play an important role in palliative care and they are regarded as highly proficient members of a multidisciplinary healthcare team towards management of chronic pain. Pain necessarily involves three different levels of classification–based upon pain symptoms, pain mechanisms and pain syndromes. Mechanism-based treatments are most likely to succeed compared to symptomatic treatments or diagnosis-based treatments. The objective of this clinical commentary is to update the physical therapists working in palliative care, on the mechanism-based classification of pain and its interpretation, with available therapeutic evidence for providing optimal patient care using physical therapy. The paper describes the evolution of mechanism-based classification of pain, the five mechanisms (central sensitization, peripheral neuropathic, nociceptive, sympathetically maintained pain and cognitive-affective) are explained with recent evidence for physical therapy treatments for each of the mechanisms. PMID:21633629
Millions of people living with HIV/AIDS (PLHA) in Asia need access to palliative care as part of a comprehensive response to their support needs. There are many causes of pain in HIV/AIDS, and its prevalence is as high if not higher than in cancer, but it is frequently undertreated. Access to adequate pain relief and palliative care is impeded by the barriers which face PLHA in Asia. These include few care and support services, lack of recognition and acknowledgement of pain in HIV/AIDS by health care professionals, widespread stigma and discrimination especially towards vulnerable groups such as injecting drug users, government regulatory mechanisms which make access to opioids even more difficult for the care services which have developed and a lack of understanding of or advocacy for pain relief and palliative care in the literature on HIV/AIDS care and support. During the growth of palliative care in Asia, there is opportunity for advocates of palliative care and care for PLHA to collaborate to influence national policy.
Paudel, Bishnu Dutta; Ryan, Karen M; Brown, Mary Skemp; Krakauer, Eric L; Rajagopal, M R; Maurer, Martha A; Cleary, James F
Globally, cancer incidence and mortality are increasing, and most of the burden is shifting to low- and middle-income countries (LMICs), where patients often present with late-stage disease and severe pain. Unfortunately, LMICs also face a disproportionate lack of access to pain-relieving medicines such as morphine, despite the medical and scientific literature that shows morphine to be effective to treat moderate and severe cancer pain. In 2008, an oncologist from Nepal, one of the poorest countries in the world, was selected to participate in the International Pain Policy Fellowship, a program to assist LMICs, to improve patient access to pain medicines. Following the World Health Organization public health model for development of pain relief and palliative care, the Fellow, working with colleagues and mentors, has achieved initial successes: three forms of oral morphine (syrup, immediate-release tablets, and sustained-release tablets) are now manufactured in the country; health-care practitioners are receiving training in the use of opioids for pain relief; and a new national palliative care association has developed a palliative care training curriculum. However, long-term implementation efforts, funding, and technical assistance by governments, philanthropic organizations, and international partners are necessary to ensure that pain relief and palliative care become accessible by all in need in Nepal and other LMICs.
Oya, Hisaharu; Matoba, Motohiro; Murakami, Satoshi; Ohshiro, Taihei; Kishino, Takayoshi; Satoh, Yuya; Tsukahara, Tetsuo; Hori, Syutarou; Maeda, Masahiro; Makino, Takashi; Maeda, Takashi
Knowledge concerning palliative care and the associated skills, including effective pain control, is essential for surgeons who treat cancer patients in daily practice. This study focuses on a palliative care training course that has been mandatorily conducted for all surgical residents of our hospital since 2009. We evaluated the effectiveness of our mandatory palliative care training course by conducting a retrospective study of the patients' medical records and participants' questionnaire results and discussed the importance of palliative care education for surgical residents. All 12 surgical residents who participated in the course in 2009 had graduated 4-9 years back. They were assigned to look after a total of 92 cases (average, 7.66 cases per resident) during the course. The purpose of care in most cases (92.3%) was to mitigate pain. Introducing analgesic adjuvants such as gabapentin or amitriptyline accounted for the largest part of initial interventions (23.9%) aimed at controlling cancer pain, followed by changes in route of administration or doses of prior opioid analgesics (21.7%). Interventions with opioid analgesics were conducted most frequently (47.7%). The overall pain improvement rate was 89.1%. We used a questionnaire after the course to evaluate its effectiveness. The surgical residents stated that it was a meaningful course through which they gained practical knowledge on palliative care and that the experience would change their approach to home care.
Oya, Hisaharu; Matoba, Motohiro; Murakami, Satoshi; Ohshiro, Taihei; Kishino, Takayoshi; Satoh, Yuya; Tsukahara, Tetsuo; Hori, Syutarou; Maeda, Masahiro; Makino, Takashi; Maeda, Takashi
Background Knowledge concerning palliative care and the associated skills, including effective pain control, is essential for surgeons who treat cancer patients in daily practice. This study focuses on a palliative care training course that has been mandatorily conducted for all surgical residents of our hospital since 2009. Methods We evaluated the effectiveness of our mandatory palliative care training course by conducting a retrospective study of the patients' medical records and participants' questionnaire results and discussed the importance of palliative care education for surgical residents. Results All 12 surgical residents who participated in the course in 2009 had graduated 4–9 years back. They were assigned to look after a total of 92 cases (average, 7.66 cases per resident) during the course. The purpose of care in most cases (92.3%) was to mitigate pain. Introducing analgesic adjuvants such as gabapentin or amitriptyline accounted for the largest part of initial interventions (23.9%) aimed at controlling cancer pain, followed by changes in route of administration or doses of prior opioid analgesics (21.7%). Interventions with opioid analgesics were conducted most frequently (47.7%). The overall pain improvement rate was 89.1%. We used a questionnaire after the course to evaluate its effectiveness. Conclusions The surgical residents stated that it was a meaningful course through which they gained practical knowledge on palliative care and that the experience would change their approach to home care. PMID:23275645
Barnett, Michael D; Maurer, Scott H; Wood, Gordon J
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles. Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents. Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues. This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles. © The Author(s) 2015.
Hanssen, Ingrid; Pedersen, Gry
The purpose of this study was to draw out and coalesce the topic-specific information found in research literature regarding the provision of culturally sensitive palliative practice. This was a literature study and Gadamerian hermeneutic text analysis. It is more difficult to assess the level of pain in ethnic minority patients, and healthcare providers may become frustrated and interpret pain symptoms as fabrication. These patients are more likely to receive inadequate pain medication. Physical symptom management has become the priority in palliative care, but pain must also be viewed from the perspective of its social, cultural, and spiritual significance. Collectivist values may lead to an other-reliant and dependent coping style. This and religious demands may cause the family to rally around the patient. Many dying patients wish to be cared for at home by their families, but as the patient often has complex needs, the family may not be able to cope with the patient's care. Formal education and in-service programs are needed for healthcare providers, together with empirical studies regarding how to achieve more culturally appropriate care in intercultural palliative practice. The immigrant population needs to be educated about cancer and the various kinds of palliative and hospice care offered in the society in which they now live.
A nurse clinician within a mobile pain and palliative care team carries out multiple activities. A philosophical approach and technical and relational skills are required, notably for the carrying out of second line consultations. This specific contribution means the nurse clinician plays an important role within the multidisciplinary team.
Gutgsell, Kathy Jo; Schluchter, Mark; Margevicius, Seunghee; DeGolia, Peter A; McLaughlin, Beth; Harris, Mariel; Mecklenburg, Janice; Wiencek, Clareen
Treatment of pain in palliative care patients is challenging. Adjunctive methods of pain management are desirable. Music therapy offers a nonpharmacologic and safe alternative. To determine the efficacy of a single music therapy session to reduce pain in palliative care patients. Two hundred inpatients at University Hospitals Case Medical Center were enrolled in the study from 2009 to 2011. Patients were randomly assigned to one of two groups: standard care alone (medical and nursing care that included scheduled analgesics) or standard care with music therapy. A clinical nurse specialist administered pre- and post-tests to assess the level of pain using a numeric rating scale as the primary outcome, and the Face, Legs, Activity, Cry, Consolability Scale and the Functional Pain Scale as secondary outcomes. The intervention incorporated music therapist-guided autogenic relaxation and live music. A significantly greater decrease in numeric rating scale pain scores was seen in the music therapy group (difference in means [95% CI] -1.4 [-2.0, -0.8]; P<0.0001). Mean changes in Face, Legs, Activity, Cry, Consolability scores did not differ between study groups (mean difference -0.3, [95% CI] -0.8, 0.1; P>0.05). Mean change in Functional Pain Scale scores was significantly greater in the music therapy group (difference in means -0.5 [95% CI] -0.8, 0.3; P<0.0001) [corrected]: A single music therapy intervention incorporating therapist-guided autogenic relaxation and live music was effective in lowering pain in palliative care patients. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Borghi, Camila Amaral; Rossato, Lisabelle Mariano; Damião, Elaine Buchhorn Cintra; Guedes, Danila Maria Batista; Silva, Ellen Maria Reimberg da; Barbosa, Silvia Maria de Macedo; Polastrini, Rita Tiziana
A qualitative study was conducted with semi-structured interviews with the aim of understanding the experience of children and adolescents under palliative care when managing pain daily and how they describe the intensity, quality and location of pain. We used Piaget's theory of cognitive development as a theoretical framework and oral history as a methodological framework. We found four themes: describing pain; seeking a life closer to normality, despite pain and disease; using a variety of alternatives for pain control; and living with damaged physical appearance. Although pain is a limiting factor in the lives of children and adolescents, we found that they faced their daily pain and still had a life beyond pain and illness. In addition, we highlight the relevance of nurses' understanding that effective management of pain in children is essential for a normal life and less suffering.
Herndon, Christopher M; Strassels, Scott A; Strickland, Jennifer M; Kral, Lee A; Craig, David S; Nesbit, Suzanne Amato; Finley, Rebecca S; McPherson, Mary Lynn
Pain and symptoms related to palliative care (pain and palliative care [PPC]) are often undertreated. This is largely owing to the complexity in the provision of care and the potential discrepancy in education among the various health care professionals required to deliver care. Pharmacists are frequently involved in the care of PPC patients, although pharmacy education currently does not offer or require a strong curriculum commitment to this area of practice. The Strategic Planning Summit for the Advancement of Pain and Palliative Care Pharmacy was convened to address opportunities to improve the education of pharmacists and pharmacy students on PPC. Six working groups were charged with objectives to address barriers and opportunities in the areas of student and professional assessment, model curricula, postgraduate training, professional education, and credentialing. Consensus was reached among the working groups and presented to the Summit Advisory Board for adoption. These recommendations will provide guidance on improving the care provided to PPC patients by pharmacists through integrating education at all points along the professional education continuum.
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 ...
Klepstad, Pål; Kaasa, Stein; Cherny, Nathan; Hanks, Geoffrey; de Conno, Franco
The Research Network of the European Association for Palliative Care (EAPC) performed a survey of 3030 cancer patients from 143 palliative care centres in 21 European countries. The survey addressed pain intensity and the use of non-opioid analgesics, adjuvant analgesics and opioids. Patients were treated with analgesics corresponding to the WHO pain ladder step I (n = 855), step II (n = 509) and step III (n = 1589). The investigators assessed 32% of the patients as having moderate or severe pain. In general there were small differences between pain intensities across different countries. Cancer primary sites and the presence of metastasis had only minor influences on pain intensity. The most frequently used non-opioid analgesics were NSAIDs (26%) and paracetamol (23%). Adjuvant analgesics or co-analgesics used by >1% of the patients were corticosteroids (39%), tricylic antidepressants (11%), gabapentin (5%), bisphosphonates (4%), clonazepam (2%), carbamazepine (4%) and phenytoin (2%). The use of non-opioid analgesics and co-analgesics varied widely between countries. Opioids administered for mild to moderate pain were codeine (8%), tramadol (8%), dextropropoxyphene (5%) and dihydrocodeine (2%). Morphine was the most frequently used opioid for moderate to severe pain (oral normal release morphine: 21%; oral sustained-release morphine: 19%; i.v. or s.c. morphine: 10%). Other opioids for moderate to severe pain were transdermal fentanyl (14%), oxycodone (4%), methadone (2%), diamorphine (2%) and hydromorphone (1%). We observed large variations in the use of opioids across countries. Finally, we observed that only a minority of the patients who used morphine needed very high doses.
Collaborations in palliative care have helped to create a framework and identify preferred practices so the field of palliative care can grow. Teamwork designed in a transdisciplinary style is desired and provides whole-person, sensitive, and comprehensive care. In applying the basic key concepts and evidenced-based knowledge of palliative care, this article details one palliative care department's effort to create change, enhance the delivery of care, and build their palliative care practice. Creating collaborations and building partnerships were fundamental outcomes to improve the palliative care practice, increase transdisciplinary teamwork activities, and enhance the delivery of care in this organization.
Gonçalves, José António Ferraz; Silva, Paula; Araújo, Patrícia
The effectiveness of the step II of the World Health Organization analgesic ladder including tramadol has been questioned recently. Retrospective study of patients treated with tramadol admitted as inpatients to one palliative care unit between November 1, 2009, and October 30, 2012. In the study period, 730 patients were admitted and 66 (9%) of them met the criteria for inclusion; 45 (68%) continued medication with tramadol until discharge from the unit, while 21 (32%) had to switch to an opioid for moderate to severe pain. The reason for switching was uncontrolled pain in 16 (76%) patients, and for 5 (24%) patients, the switch was made for other reasons. The data suggest that tramadol may have a role to play in the treatment of pain in palliative care. © The Author(s) 2014.
Paneduro, Denise; Pink, Leah R; Smith, Andrew J; Chakraborty, Anita; Kirshen, Albert J; Backstein, David; Woods, Nicole N; Gordon, Allan S
Despite calls for the development and evaluation of pain education programs during early medical student training, little research has been dedicated to this initiative. To develop a pain management and palliative care seminar for medical students during their surgical clerkship and evaluate its impact on knowledge over time. A multidisciplinary team of palliative care and pain experts worked collaboratively and developed the seminar over one year. Teaching methods included didactic and case-based instruction, as well as small and large group discussions. A total of 292 medical students attended a seminar during their third- or fourth-year surgical rotation. A 10-item test on knowledge regarding pain and palliative care topics was administered before the seminar, immediately following the seminar and up to one year following the seminar. Ninety-five percent (n=277) of students completed the post-test and 31% (n=90) completed the follow-up test. The mean pretest, post-test and one-year follow-up test scores were 51%, 75% and 73%, respectively. Mean test scores at post-test and follow-up were significantly higher than pretest scores (all P<0.001). No significant difference was observed in mean test scores between follow-up and post-test (P=0.559), indicating that students retained knowledge gained from the seminar. A high-quality educational seminar using interactive and case-based instruction can enhance students' knowledge of pain management and palliative care. These findings highlight the feasibility of developing and implementing pain education material for medical students during their training.
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
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. Multisite, prospective, consecutive cohort. 127 patients, 114 of whom had cancer, who started gabapentin for neuropathic pain as part of routine clinical care. 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). 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. Overall, 42% of people experienced benefit at a level that resulted in continued use at 21 days. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
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
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
Orentlicher, D; Caplan, A
Recent educational efforts in the US medical community have begun to address the critical issue of palliative care for terminally ill patients. However, a newly introduced bill in Congress, the Pain Relief Promotion Act of 1999 (PRPA), could dramatically hinder these efforts if enacted. The act criminally punishes the use of controlled substances to cause-or assist in causing-a patient's death. The primary purposes of PRPA are to override the physician-assisted suicide law currently in effect in Oregon and prohibit other states from enacting similar laws. The act also includes valuable provisions for better research and education in palliative care, but the benefits of those provisions are outweighed by the punitive sections of the act. Under PRPA, the quality of palliative care in the United States could be compromised when physicians, fearing criminal prosecution, err on the side of caution rather than risk their patients' deaths by using highly aggressive pain treatments. Furthermore, PRPA would put Drug Enforcement Administration officials, who have no medical expertise, in the position of regulating medical decisions. The act also would interfere with individual states' long-standing authority over medical practice. Finally, PRPA would discourage physicians from engaging in experimentation and innovation in palliative care, again out of concern for crossing the line between relief of suffering and physician-assisted suicide. Other bills have been introduced that go much further than PRPA to encourage palliative care, without its problematic provisions. Regardless of the controversy surrounding physician-assisted suicide in the United States, the need for quality end-of-life care will be far better served if Congress enacts one of these bills rather than PRPA.
Barata, Pedro; Santos, Filipa; Mesquita, Graça; Cardoso, Alice; Custódio, Maria Paula; Alves, Marta; Papoila, Ana Luísa; Barbosa, António; Lawlor, Peter
Pain is a common symptom experienced by cancer patients, especially in those with advanced disease. Our aim was to describe pain intensity in advanced cancer patients, referred to the palliative care unit, the factors underlying moderate to severe pain and its prognostic values. This was a prospective observational study. All patients with mestastatic solid tumors and with no specific oncologic treatment were included. Pain intensity was accessed using the pain scale from Edmonton Symptom Assessment Scale, rated from 0 to 10 on a numerical scale, where zero = no pain and 10 = worst possible pain. Between October 2012 and June 2015, a total of 301 patients participated in the study. The median age was 69 years, (37 - 94); most of the patients were men (57%) and 64.8% had a performance status of 3/4. About 42% reported pain severity ≥ 4 and 74% were medicated with opioids. Multivariate analysis indicated a correlation between performance status and reported pain (OR: 1.7; IC 95%: 1.0 - 2.7; p = 0.045). Median overall survival was 37 days (IC 95%: 28 - 46). Patients reporting moderate to severe pain (pain severity ≥ 4) had a median survival of 29 days (IC 95%: 21 - 37), comparing with those who had no or moderate pain with median survival of 49 days (IC 95%: 35 - 63) (p = 0.022). The performance status was associated with more intense pain. The performance status, hospitalization, intra-abdominal metastization and opioid analgesia were associated with shorter time to death in advanced cancer patients referred to palliative care. Cancer pain continues to be a major clinical problem in advanced cancer patients.
McPherson, Christine J; Hadjistavropoulos, Thomas; Lobchuk, Michelle M; Kilgour, Kelly N
BACKGROUND: Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients’ cancer-related pain, despite its significance for pain management in the home setting. OBJECTIVES: To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers. METHODS: A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (≥65 years of age) with advanced cancer receiving palliative care at home and their family caregivers. RESULTS: The main category ‘Experiencing cancer pain’ incorporated three themes. The theme ‘Feeling cancer pain’ included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, ‘Reacting to cancer pain’, included patients’ and family caregivers’ behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, ‘Living with cancer pain’ incorporated individual and social-relational changes that resulted from living with cancer pain. CONCLUSIONS: The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged. PMID:23957019
Wilson, Keith G; Chochinov, Harvey Max; Allard, Pierre; Chary, Srini; Gagnon, Pierre R; Macmillan, Karen; De Luca, Marina; O’Shea, Fiona; Kuhl, David; Fainsinger, Robin L
BACKGROUND: Pain is a common problem for people with cancer who are nearing the ends of their lives. OBJECTIVE: In the present multicentre Canadian study of palliative cancer care, the prevalence of pain, its perceived severity and its correlates across a range of physical, social, psychological, and existential symptoms and concerns were examined. METHODS: Semistructured interviews were conducted with 381 patients. In addition to inquiring about pain, the interview also assessed 21 other symptoms and concerns, and collected information about demographic characteristics, functional status and medication use. RESULTS: Pain of any intensity was reported by 268 (70.3%) participants, although for 139 (36.5%), the severity was rated as minimal or mild. For 129 (33.9%) individuals, pain was reported as moderate to extreme, and considered by the respondents to be an important ongoing problem. Patients who reported moderate to extreme pain were younger than other participants, but had lower functional status and a shorter median survival duration. They were more likely than other participants to be treated with opioid medications (P<0.001) and, less reliably, with benzodiazepines (P=0.079). Compared with participants with no, minimal or mild pain, those with moderate to extreme pain had a higher prevalence of distressing problems on 11 of 21 other symptoms and concerns. The strongest correlations were with general malaise (rho = 0.44), suffering (rho = 0.40), nausea (rho = 0.34), weakness (rho = 0.31), drowsiness (rho = 0.29) and anxiety (rho = 0.29). CONCLUSIONS: Pain continues to be a difficult problem for many patients who are receiving palliative cancer care, particularly younger individuals who are nearing death. PMID:19862371
Thomas, Jay R; Cooney, Gail Austin; Slatkin, Neal E
Opioid analgesics are a cornerstone of pain therapy in the hospice and palliative care population. However, opioid-induced bowel dysfunction (OBD) is a commonly associated condition that frequently compromises the usefulness of these agents. Although its most common and debilitating symptom is constipation, the impact of OBD extends beyond constipation to encompass a myriad of gastrointestinal (GI) signs and symptoms, ranging from decreased gastric emptying and reflux to abdominal pain, cramping, bloating, nausea, and vomiting. Even after aggressive therapies to improve bowel function have been implemented, many patients continue to experience symptoms of OBD. To avoid these unwanted effects, some even choose to decrease or discontinue therapy with opioid analgesics, and experience inadequate pain control. The net result of OBD is a seriously negative impact on quality of life (QOL). For these reasons, it is important that palliative care practitioners have an adequate understanding of normal GI function and the underlying mechanisms responsible for OBD, the burden of OBD in the context of appropriate and effective pain management, and the benefits provided by effective pharmacotherapy. Several real-world cases are discussed to illustrate the application of optimal symptom management and the use of strategies that minimize the effects of OBD and improve patient QOL.
... emotional distress. A special type of care called palliative care is available to help you get relief from these and other symptoms. You can receive palliative care at any stage of your serious illness, including ...
Soden, Katie; Ali, Simone; Alloway, Lara; Barclay, David; Perkins, Paul; Barker, Stephanie
The aim of this qualitative study was to gain a better understanding of how nurses working on inpatient specialist palliative care units assess and manage breakthrough pain. Thematic analysis of semi-structured interviews with fifteen nurses from five different specialist palliative care units in the UK was undertaken. Themes identified have been broadly categorized into four main areas: defining breakthrough pain, assessing breakthrough pain, managing breakthrough pain, and attitudes/teamwork. Nurses had difficulty defining breakthrough pain as a distinct pain subtype and were often unable to differentiate it from poorly controlled background pain. This study highlights significant training needs and suggests that the theoretical work and recently published consensus recommendations around breakthrough pain now need to be translated into day-to-day clinical practice.
There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population.
There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population. PMID:25999611
Dy, Sydney Morss; Hughes, Mark; Weiss, Carlos; Sisson, Stephen
The objectives of this study were to determine internal medicine residents' knowledge of outpatient palliative care pain management, describe the association of level of training with knowledge, and evaluate the impact on knowledge of a web-based, interactive, evidence-based educational module. We developed the module using established educational principles, based on review of other educational materials, guidelines, and the medical literature. The module included pretest and post-test questions, case studies, didactic sections, and web links. Six hundred twelve housestaff in 35 training programs in 19 states completed the module during the 2005-2006 academic year (196 [32.0%] postgraduate year [PGY]-1, 200 [32.7%] PGY-2, and 216 [35.3%] PGY-3). The mean pretest score was 54.4% (range 31.1%-84.6%); scores were lowest for specific pain management knowledge questions, including appropriate titration of breakthrough opioid doses (mean 31.1% correct) and appropriate initial use of opioids (40.7% correct). Pretest scores were not significantly different by level of training (52.2% for PGY-1 and 56.7% for PGY-3). The mean post-test score was 72.8%, a statistically significant increase from the pretest overall (P<0.001) and for seven of the 10 learning objectives (P<0.001). These findings indicate that housestaff lacked knowledge in many areas of palliative care pain management, and knowledge did not increase with time spent in residency. The large increase in test scores after the module suggests that this may be an effective component of a comprehensive palliative care curriculum.
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
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)
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
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)
Background A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments. The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy. Methods We retrospectively analysed the PCCS documentation of three years. Results Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice. Conclusion This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support
Facco, Enrico; Casiglia, Edoardo; Zanette, Gastone; Testoni, Ines
The huge problems related to chronic, ultimately fatal diseases involve disability, pain, suffering and the perception of one's doom; this calls for reappraising the conventional concepts of health and disease, life and death, encompassing spirituality and the mystery of death beyond any limited perspective. The management of suffering and pain to enhance resilience plays a central role in palliative care (PC) and is the core of the patient-centered approach, focused on the "to care" instead of the "to cure" of the illness-centered medicine. In this article, the perspectives supporting these instances are analyzed, focusing on hypnosis, to be considered as a powerful technique able to improve patient's control over mind and body (including relaxation, fairness, analgesia, improved stability of physical parameters and wellbeing).
Husic, Samir; Imamovic, Semir; Matic, Srecko; Sukalo, Aziz
Introduction: This research was to follow characteristics of breakthrough pain caused by cancer (BTcP) and other most common sympthoms (ESAS) at patients in advanced stage of cancer disease in palliative care. Patients and methods: Prospective study included 433 patients which were treated in Palliative Care Centre in UKC Tuzla, Bosnia and Herzegovina. Group 1 was consisted of 353 patients whose basal cancer pain of intensity 4-7 NRS was treated weak opiates (basal analgetic- fixed combination of tramadol/paracetamol (37.5 mg/325 mg) in initial dose 3x1tbl for pain intensity 4, to 4x2tbl (for pain intensity 7). In Group 2 (80 patients) basal pain of intensity 8-10 was treated strong opiates as basal analgetic (oral morphine and transdermal fentanil). If the previous day were 2 or more breakthrough pain that required ‘’rescue dose’’ of analgetics (tramadol 50-100 mg orally in group 1 ie. Oral morphine 8-12 mg in the group 2), the dose of basal analgetic was increased. Results: The total number of reported breakthrough pain in all 433 patients for 10 days of treatment was 3 369 (0.78 BTcP /per patient/day), where at Group 1 patients showed significantly lower BTcP (0.56 BTcP/patient/day). The average intensity of BTcP was 5.91 where in the Group1 was 4.51 while in the Group 2 8.04. 582 (17.28%) was rated grade 7, of which 539 were successfully coupled by strong and 43 (7.39%) successfully coupled by weak opiates. From 556 BTcP who were rated with 8, 540 of them were coupled strong and only 16 successfully coupled by weak opiates. 1967 (58.39 %) of breakthrough pain has occured in the evening hours (18-06 h), while 1402 (41.62%) BTCP occured during day hours (06-18h). Most (1290 or 38.29%) of breakthrough pain lasted less than 10 minutes, 882 (26.18%) between 16 and 20 minutes, 752 (22.32%) between 11 and 15 minutes, 407 (12.8%) between 21 and 30 minutes and 38 (1.13%) lasted longer than 20 minutes. Conclusion: Duriong our study, we noted a relatively large
Smith, George P
Since the beginning of the hospice movement in 1967, "total pain management" has been the declared goal of hospice care. Palliating the whole person's physical, psychosocial, and spiritual states or conditions is central to managing the pain that induces suffering. At the end-stage of life, an inextricable component of the ethics of adjusted care requires recognition of a fundamental right to avoid cruel and unusual suffering from terminal illness. This Article urges wider consideration and use of terminal sedation, or sedation until death, as an efficacious palliative treatment and as a reasonable medical procedure in order to safeguard the "right" to a dignified death. Once the state establishes a human right to avoid refractory pain of whatever nature in end-stage illness, a coordinate responsibility must be assumed by health care providers to make medical judgments consistent with preserving the best interests of a patient's quality of life by alleviating suffering. The principle of medical futility is the preferred construct for implementing this professional responsibility. Rather than continue to be mired in the vexatious quagmire of the doctrine of double effect--all in an effort to "test" whether end-stage decisions by health care providers are licit or illicit--a relatively simple test of proportionality, or cost-benefit analysis, is proffered. Imbedded, necessarily, in this equation is the humane virtue of compassion, charity, mercy or agape. Assertions of state interest in safeguarding public morality by restricting intimate associational freedoms to accelerate death in a terminal illness are suspicious, if, indeed, not invalid. No terminally ill individual suffering from either intractable somatic or non-somatic pain, or both, should be forced to continue living.
Fromage, B; Hatti, M
In palliative care, people with advanced or terminal phase cancer represent a significant proportion of patients. Persuaded that the pain and suffering they experience will never disappear from their daily life, patients are exposed to successive fracture triggered by psychosocial/physical factors. Furthermore, the difficulty in palliative care is that the pain is also a subjective phenomenon. However, the only information available to indicate pain remains the quantitative assessment of the patient or the observation of his/her behaviour. Pain caused by cancer optimally exhibits the difficulty of pain assessment, where a patient may properly assess, through their somatic pain, their own experience of pain expressed according to the consequence of illness on their history and personality. This exploratory study aims to show how the development of analogical subjective speech has an effect on the pain experience in patients with cancer. Indeed, the hypothesis is that one can reduce the sensation of pain by transforming the emotional experience via a figurative/discursive activity due to an elaboration work and clarification of the painful experience. Method-Four terminally ill patients passed the "L'Épreuve des Trois Arbres" (three-tree test) (ETA), which consisted in drawing trees and telling their story. The ETA aims to facilitate the expression of the overall experience according to a person's perspective on a specific situation. In this experiment, quantitative and qualitative data were collected. More specifically, the quantitative data was based on the assessment of somatic pain using the visual analog scale (VAS) of 1 to 10 (0 = no pain, 10 = unbearable pain) and a qualitative analysis assessed with the ETA, which focused on the meaning of pain, a subjective component that can increase the expression of somatic pain. The pain experience is assessed before and after the execution of the ETA using the VAS. The results show a reduction of painful sensation and
Chung, T K; French, P; Chan, S
This article reviews a study of pain management and its barriers in Hong Kong. Using an interview technique, several measures were used to understand the level of concern in patients about pain, the patients' hesitancy in reporting pain, use of analgesics, and adequacy of medication for pain. A total of nine barriers were identified, which include "addiction," "tolerance," "side effects," "physician distraction," "good patient," "fear of injection," "time interval," "fatalism," and "disease progression." Thirty-nine interviews were carried out. The interviewees were all cancer patients with pain in a palliative setting in Hong Kong. When the findings in Taiwan and the United States were compared, it was found that the cancer patients in Hong Kong had a higher level of concern toward the patient-related barriers. It was also found that the level of concern was generally higher in the group with hesitancy in reporting pain and using analgesics. Last of all, this project also identified the educational needs of patients and health care workers in Hong Kong.
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
Real-world effectiveness of many medications has been poorly researched, including in hospice/palliative care. Directly extrapolating findings from other clinical settings may not yield robust clinical advice. Pharmacovigilance studies provide an opportunity to understand better the net impact of medications. The study aimed to examine immediate and short-term benefits and harms of pregabalin in routine practice for neuropathic pain in hospice/palliative care. A consecutive cohort of 155 patients from 62 centres in 5 countries was started on pregabalin and studied prospectively. Data were collected at three time points: baseline; day 7 (immediate, short-term harms); ad hoc reports of any harms ≤21 days; and day 21 (short-term benefits). Median dose for 155 patients at day 21 was 150 mg/24 h. Benefits were reported by 61 patients (39%), of whom 11 (7%) experienced complete pain resolution. Harms were reported by 51 (35%) patients at or before 7 days, the most frequent of which were somnolence, fatigue, cognitive disturbance and dizziness. 10 patients (6%) ceased pregabalin due to harms, but 82 patients (53%) were being treated at 21 days. In regression modelling, people with worse baseline pain derived more benefit (OR=8.5 (95% CI 2.5 to 28.68). Pregabalin delivered benefit to many patients, with 4 of 10 experiencing pain reductions by 21 days. Harms, occurring in 1 in 3 patients, may be difficult to detect in clinical practice, as they mostly involve worsening of symptoms prevalent at baseline. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Sekiguchi, Kenji; Bell, Christina L; Masaki, Kamal H; Fischberg, Daniel J
Despite palliative care implementation, most deaths still occur in hospitals. To identify factors associated with in-hospital death among elderly patients receiving palliative care, by site of consultation. Prospective observational study. All inpatients aged 65 years and older receiving pain and palliative care consultations in a 533-bed acute tertiary care hospital in Honolulu, Hawaii, from January 2005 through December 2009. During consultation, demographics, diagnoses, consultation site (intensive care unit [ICU], non-ICU medical, non-ICU surgical, and rehabilitation floors), consultation indication (assistance with establishing goals of care versus pain and/or symptom management), Karnofsky scores, length of stay (LOS), discharge disposition, and in-hospital death were collected. Multiple logistic regression analyses examined factors associated with in-hospital death. Of 1630 elderly inpatients receiving palliative care, 305 (19%) died in-hospital. In-hospital death among non-ICU medical patients was associated with needing consultation to assist with plan of care (odds ratio [OR]=1.89, 95% confidence interval [CI]=1.27-2.80). Likelihood of in-hospital death increased 2% for each additional hospital day before consultation (OR=1.02, 95% CI=1.01-1.03). Among elderly ICU patients, likelihood of in-hospital death increased 8% for each additional hospital day before consultation (OR=1.08, 95% CI=1.01-1.16). Among elderly non-ICU medical patients receiving palliative care consultations, the need for a consultation to assist with plan of care was associated with in-hospital death, while length of stay prior to consultation was important among both elderly ICU and non-ICU medical patients. Elderly hospitalized patients may benefit from earlier identification and palliative care consultation for assistance with plan of care to avoid in-hospital death.
Nekolaichuk, Cheryl L; Fainsinger, Robin L; Aass, Nina; Hjermstad, Marianne J; Knudsen, Anne Kari; Klepstad, Pål; Currow, David C; Kaasa, Stein
Standardized approaches for assessing and classifying cancer pain are required to improve treatment of patients with complex pain profiles. The Edmonton Classification System for Cancer Pain (ECS-CP) offers a starting point for the evolution of a standardized international classification system for cancer pain and was introduced into multisite research initiatives of the European Palliative Care Research Collaborative (EPCRC). The primary purpose of this study was to describe the prevalence of the five ECS-CP pain classification features: pain mechanism, incident pain, psychological distress, addictive behavior, and cognition--in a diverse international sample of patients with advanced cancer. A total of 1070 adult patients with advanced cancer were recruited from 17 sites in Norway, the United Kingdom, Austria, Germany, Switzerland, Italy, Canada, and Australia; 1051 of 1070 patients were evaluable. A clinician completed the ECS-CP for each enrolled patient. Additional information, including pain intensity, were also collected through patient self-reports, using touch-sensitive computers. Of 1051 evaluable patients, 670 (64%) were assessed by a clinician as having cancer pain: nociceptive pain (n=534; 79.7%); neuropathic pain (n=113; 16.9%); incident pain (n=408; 60.9%); psychological distress (n=212; 31.6%); addictive behavior (n=30; 4.5%); normal cognition (n=616; 91.9%). The prevalence of ECS-CP features and pain intensity scores (11-item scale; 0=none, 10=worst; rated as now) varied substantially across sites and locations of care. The ECS-CP is a clinically relevant systematic framework, which is able to detect differences in salient pain classification features across diverse settings and countries. Further validation studies need to be conducted in varied advanced cancer and palliative care settings to advance the development of the ECS-CP toward an internationally recognized pain classification system.
Phillips, Jane L; Heneka, Nicole; Hickman, Louise; Lam, Lawrence; Shaw, Tim
Pain is a complex multidimensional phenomenon moderated by consumer, provider and health system factors. Effective pain management cuts across professional boundaries, with failure to screen and assess contributing to the burden of unrelieved pain. To test the impact of an online pain assessment learning module on specialist palliative care nurses' pain assessment competencies, and to determine whether this education impacted positively on palliative care patients' reported pain ratings. A quasi-experimental pain assessment education pilot study utilising 'Qstream(©)', an online methodology to deliver 11 case-based pain assessment learning scenarios, developed by an interdisciplinary expert panel and delivered to participants' work emails over a 28-day period in mid-2012. The 'Self-Perceived Pain Assessment Competencies' survey and chart audit data, including patient-reported pain intensity ratings, were collected pre-intervention (T1) and post-intervention (T2) and analysed using inferential statistics to determine key outcomes. Nurses working at two Australian inpatient specialist palliative care services in 2012. The results reported conform to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines. Participants who completed the education intervention ( n = 34) increased their pain assessment knowledge, assessment tool knowledge and confidence to undertake a pain assessment ( p < 0.001). Participants were more likely to document pain intensity scores in patients' medical records than non-participants (95% confidence interval = 7.3%-22.7%, p = 0.021). There was also a significant reduction in the mean patient-reported pain ratings between the admission and audit date at post-test of 1.5 (95% confidence interval = 0.7-2.3) units in pain score. This pilot confers confidence of the education interventions capacity to improve specialist palliative care nurses' pain assessment practices and to reduce patient-rated pain intensity
Maeda, Isseki; Miyashita, Mitsunori; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Izumi, Noriko; Yamaguchi, Takuhiro; Igarashi, Miyuki; Kato, Masashi; Morita, Tatsuya
A region-based palliative care intervention (Outreach Palliative Care Trial of Integrated Regional Model Study) increased home death, access to specialist palliative care, quality of care, and quality of death and dying. The objective of this study was to examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care. The intervention program was implemented from April 2008 to March 2011. Two bereavement surveys were conducted before and after intervention involving 4228 family caregivers of deceased cancer patients. Family-perceived quality of care (range 1-6), quality of death and dying (1-7), pain relief (1-7), and caregiver burden (1-7) were measured. Response rates were 69% (preintervention) and 66% (postintervention), respectively. Family-perceived quality of care (adjusted mean 4.89, 95% CI 4.54-5.23) and quality of death and dying (4.96, 4.72-5.20) at home were the highest and sustained throughout the study. Palliative care units were at the intermediate level between home and hospitals. In hospitals, both quality of care and quality of death and dying were low at baseline but significantly improved after intervention (quality of care: 4.24, 4.13-4.34 to 4.43, 4.31-4.54, P = 0.002; quality of death and dying: 4.22, 4.09-4.36 to 4.36, 4.22-4.50, P = 0.012). Caregiver burden did not significantly increase after intervention, regardless of place of death. The dual strategies of transition of place of death to home and improving quality of care in hospitals should be recognized as important targets for improving region-level palliative care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
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
Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie
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.
Wiencek, Clareen; Coyne, Patrick
To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed. Literature review. The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient's condition.
... and Families Take the Quiz What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is specialized ... for both the child and the family. Pediatric palliative care is provided by a team of doctors, ...
Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles
Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family.
Escutia Gutiérrez, Raymundo; Cortéz Álvarez, César R.; Álvarez Álvarez, Rosa M.; Flores Hernández, Jorge LV.; Gutiérrez Godínez, Jéssica; López Y López, José G.
Neither the purchase nor the distribution of pharmaceuticals in hospitals and community pharmacies in Mexico is under the care of pharmacists. Some are under control of physicians. This report presents the results of the implementation of somef pharmaceutical services for the Jalisco Pain Relief, and Palliative Care Institute (Palia Institute), under the direction of the Secretary of Health, Government of Jalisco. The services implemented were drug distribution system, Drug Information Service, Pharmacovigilance Program, and home pharmacotherapy follow-up pilot program for patients with advanced illness, with the ultimate using the appropriate medication. The drug distribution system included dispensing of opioid pain medications, antidepressants, anticonvulsants, NSAIDs, anxiolytic drugs, steroid drugs, laxatives, and anti-emetics. The frequently used drugs were morphine sulfate (62%), amitriptyline (6.4%), and dextropropoxyphene (5.8%). The Drug Information Service answered 114 consultations, mainly asked by a physician (71%) concerned with adverse drug reactions and contraindications (21%). The pharmacovigilance program identified 146 suspected adverse drug reactions and classified them reasonably as possible (27%), probable (69%), and certain (4%). These were attributed mainly to pregabalin and tramadol. The home pharmacotherapy follow-up pilot program cared patients with different cancer diagnoses and drug-related problems (DRP), which were identified and classified (according to second Granada Consensus) for pharmaceutical intervention as DRP 1 (5%), DRP 2 (10%), DRP 3 (14%), DRP 4 (19%), DRP 5 (24%), or DRP 6 (28%). This report provides information concerning the accurate use of medication and, above all, an opportunity for Mexican pharmacists to become an part of health teams seeking to resolve drug-related problems. PMID:25170355
Gomez-Castillo, Blanca J.; Hirsch, Rosemarie; Groninger, Hunter; Baker, Karen; Cheng, M. Jennifer; Phillips, Jayne; Pollack, John; Berger, Ann M.
Background Spirituality is a patient need that requires special attention from the Pain and Palliative Care Service (PPCS) team. This QI project aimed to provide spiritual assessment for all new outpatients with serious life-altering illnesses. Measures Percentage of new outpatients receiving spiritual assessment (Faith, Importance/Influence, Community, Address/Action in care [FICA], psychosocial evaluation, chaplain consults) at baseline and post-interventions. Intervention Interventions included encouraging clinicians to incorporate adequate spiritual assessment into patient care and implementing chaplain co-visits for all initial outpatient visits. Outcomes The quality improvement interventions increased spiritual assessment (baseline vs. post-interventions): chaplain co-visits (25.5% vs. 50%), FICA completion (49% vs. 72%) and psychosocial evaluation (89% vs. 94%). Conclusions/Lessons Learned Improved spiritual assessment in an outpatient palliative care clinic setting can occur with a multidisciplinary approach. This project also identifies data collection and documentation processes that can be targeted for improvement. PMID:26166183
Gonçalves, Ferraz; Mozes, Mónica; Saraiva, Isabel; Ramos, Cristina
In palliative care, gastrostomies are used to provide nutritional support or to decompress the bowel. To evaluate what happened to the patients monitored at our palliative care unit (PCU) who underwent gastrostomy between October 1994 and January 2005, a retrospective audit was made. The charts of 154 patients were reviewed. The most frequent reason why a patient underwent a gastrostomy was dysphagia due to head and neck and/or esophageal cancer. Only one patient underwent a drainage gastrostomy because of intestinal obstruction. Interventional radiology performed 96% of the gastrostomies. Early complications occurred in 53 patients (34%) who underwent the gastrostomy for feeding and the most common was local pain, usually mild. However, there was one death due to peritonitis, probably related with the procedure. Late complications also occurred in 53 patients and major complications occurred in 22 patients, the most common was extrusion. The median survival after the performance of the gastrostomy was 61 days (range 1 to 551 days). Nineteen patients (12%) survived 1 week or less, 28 (18%) between 8 and 30 days, 51 (33%) from 31 to 90 days, 53 (35%) 91 days or more, and one unknown. The patient who underwent a gastrostomy for bowel obstruction survived for only 7 days. One hundred and twenty-five patients (81%) died at the PCU, 26 (17%) at home, and four (3%) at other places.
Griffith, Jane; Lyman, Jason A; Blackhall, Leslie J
Palliative care that provides specialized attention to pain and symptom management is important for patients with cancer. Palliative care aims to reduce pain and other symptoms through an interdisciplinary approach involving physicians, nurses, social workers, and other members of the healthcare team. Families are included in care planning. Patients and families benefit from the availability of palliative care services early in the disease process, particularly when symptoms impact quality of life. One way to implement early palliative interventions is the establishment of an ambulatory care clinic dedicated to palliative care. This article describes the experience of an outpatient palliative care clinic at a large teaching hospital by using case studies to highlight the benefits of ambulatory palliative care and concluding with recommendations for research.
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
Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo
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.
Klick, Jeffrey C; Hauer, Julie
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).
... 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 ...
Gatrad, Rashid; Panesar, Sukhmeet Singh; Brown, Erica; Notta, Hardev; Sheikh, Aziz
This article provides an overview of the palliative care needs of Sikh patients. It describes the basis of Sikh beliefs and practices and discusses practical aspects of caring for terminally ill Sikh patients and their families. Issues before and after death are considered and the importance of an individual approach is highlighted.
... in Value-Based Payment and Contracting Apply Now Palliative Care in the Home: A Guide to Program ... Now available in the CAPC Shop! Learn more Palliative Care Leadership Centers™ (PCLC) - Now expanded to community ...
Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
Aggarwal, Sunil K; Ghosh, Amrita; Cheng, M Jennifer; Luton, Kathleen; Lowet, Peter F; Berger, Ann
With the ongoing expansion of palliative care services throughout the United States, meeting the needs of socioeconomically marginalized populations, as in all domains of healthcare, continues to be a challenge. Our specific aim here was to help meet some of these needs through expanding delivery of pain and palliative care services by establishing a new clinic for underserved patients and collecting descriptive data about its operation. In November of 2014, the National Institutes of Health Clinical Center's Pain and Palliative Care Service (PPCS) launched a bimonthly offsite pain and palliative care outpatient clinic in collaboration with Mobile Medical Care Inc. (MobileMed), a private not-for-profit primary care provider in Montgomery County, Maryland, serving underserved area residents since 1968. Staffed by NIH hospice and palliative medicine clinical fellows and faculty, the clinic provides specialty pain and palliative care consultation services to patients referred by their primary care healthcare providers. A patient log was maintained, charts reviewed, and referring providers surveyed on their satisfaction with the service. The clinic had 27 patient encounters with 10 patients (6 males, 4 females, aged 23-67) during its first 7 months of operation. The reason for referral for all but one patient was chronic pain of multiple etiologies. Patients had numerous psychosocial stressors and comorbidities. All primary care providers who returned surveys (n = 4) rated their level of satisfaction with the consultation service as "very satisfied" or "extremely satisfied." This brief descriptive report outlines the steps taken and logistical issues addressed to launch and continue the clinic, the characteristics of patients treated, and the results of quality-improvement projects. Lessons learned are highlighted and future directions suggested for the clinic and others that may come along like it.
McKinley, Deb; Shearer, Janelle; Weng, Karla
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.
Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness. PMID:27822111
Lilly, Evan J; Senderovich, Helen
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.
Lohman, Diederik; Amon, Joseph J
Palliative care has been defined as care that is person-centered and attentive to physical symptoms and psychological, social, and existential distress in patients with severe or life-threatening illness. The identification of access to palliative care and pain treatment as a human rights issue first emerged among palliative care advocates, physicians, and lawyers in the 1990s, with a basis in the right to health and the right to be free from cruel, inhuman, and degrading treatment. Using a case study approach, we evaluate the results of a human rights-based advocacy approach on access to pain medicine and palliative care in India, Kenya, and Ukraine. In each country, human rights advocacy helped raise awareness of the issue, identify structural barriers to care, define government obligations, and contribute to the reform of laws, policies, and practices impeding the availability of palliative care services. In addition, advocacy efforts stimulated civil society engagement and high-level political leadership that fostered the implementation of human rights-based palliative care programs. Globally, access to palliative care was increasingly recognized by human rights bodies and within global health and drug policy organizations as a government obligation central to the right to health. Copyright © 2015 Lohman, Amon. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.
Lee, Ya-Ping; Wu, Chih-Hsun; Chiu, Tai-Yuan; Chen, Ching-Yu; Morita, Tatsuya; Hung, Shou-Hung; Huang, Sin-Bao; Kuo, Chia-Sheng; Tsai, Jaw-Shiun
Although many cross-sectional studies have demonstrated the association between cancer pain and psychospiritual distress, the time-dependent relationship has not been fully explored. For that reason, this study aims to investigate the time-dependent relationship between psychospiritual distress and cancer pain management in advanced cancer patients. This is a prospective observational study. Two hundred thirty-seven advanced cancer patients were recruited from a palliative care unit in Taiwan. Demographic and clinical data were retrieved at admission. Pain and psychospiritual distress (i.e.: anxiety, depression, anger, level of family and social support, fear of death) were assessed upon admission and one week later, by using a "Symptom Reporting Form". Patients were divided into two groups according to the pain status one week post-admission (improved versus not improved groups). One hundred sixty-three (68.8 %) patients were assigned to the improved group, and 74 (31.2 %) patients were assigned to the not improved group. There were no differences in the psychospiritual variables between groups upon admission. In overall patients, all psychospiritual variables improved one week post-admission, but the improvement of depression and family/social support in the not improved group was not significant. Consistent with this, for depression scores, there was a statistically significant pain group x time interaction effect detected, meaning that the pain group effect on depression scores was dependent on time. We demonstrated a time-dependent relationship between depression and pain management in advanced cancer patients. Our results suggest that poor pain management may be associated with intractable depression. The inclusion of interventions that effectively improve psychospiritual distress may contribute to pain management strategies for advanced cancer patients.
The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system.
Specialist palliative care is now widely available and there are many good textbooks of palliative medicine. But some patients still suffer pain needlessly. Clinicians may not know how to use analgesia appropriately or may be anxious about giving an adequate dose of strong opioids such as morphine. This brief outline is intended to make the principles of pain control readily available to all clinicians who look after terminally ill patients. It applies to patients with non-malignant disease as well as to those with advanced cancer.
Stjernswärd, Jan; Ferris, Frank D; Khleif, Samir N; Jamous, Walid; Treish, Imad M; Milhem, Mohammed; Bushnaq, Mohammed; Al Khateib, Ahmad; Al Shtiat, Mohammad Nayef; Wheeler, Mary S; Alwan, Ala
A model for pain relief and palliative care for the Middle East has been established in Jordan. King Hussein Cancer Centre (KHCC) in Amman is now a truly comprehensive cancer center as it includes palliative care for inpatients, outpatients, and patients at home. This is especially important in a country and a region where over 75% of the cancer patients are incurable when diagnosed. To support effective palliative care delivery, there have been many significant changes in Jordan between 2001 and 2006. Regulations governing opioid prescribing have been changed to facilitate effective pain management. The national opioid quota has been increased. Cost-effective, generic, immediate-release morphine tablets are being produced in Jordan. Intensive, interactive bedside training courses for doctors, nurses, and clinical pharmacologists have started to overcome opiophobia and motivate health care professionals to take up palliative care as a profession. "Champions" for palliative care have emerged who are leading the development of palliative care in Jordan's health care systems and starting to support neighboring countries to develop pain relief and palliative care. While before 2003, fewer than 250 patients per year received palliative care, by 2006 more than 800 patients per year were receiving pain relief and palliative care through the KHCC and Al Basheer Hospital. The achieved changes and the unusually rapid and effective institutionalization of palliative care serve as a model for other countries in the Middle East region as to what should be done and how.
Jennings, Cara; Cassel, Brian; Fletcher, Devon; Wang, Aiping; Archer, Kellie J; Skoro, Nevena; Yanni, Leanne; Del Fabbro, Egidio
Abstract Background: Outpatient palliative care clinics may be required to manage patients not typically seen by palliative care. These include patients treated for cancer who no longer have evidence of disease (NED) and patients with chronic pain but no life-limiting illness (NLLI). Treatment response may differ among these groups. Our aim was to determine treatment response by change in pain scores and morphine equivalent daily dose (MEDD) between initial visit and first follow-up in patients with active cancer (AC), NED, and those with NLLI. A retrospective review of 143 consecutive outpatients referred to a clinic staffed by the palliative care program was conducted. Pain treatment response was defined by a ≥ 2 point difference on the Numerical Rating Scale (NRS) or ≥ 30% reduction from baseline score. Ninety-four patients had pain scores at both initial and follow-up visits after a median of 29.0 days. Fifty percent had AC, 27% NED, and 23% NLLI. Mean (standard deviation [SD]) pain scores at baseline were not significantly different among AC 6.0 (2.5), NED 5.6 (2.5), and NLLI 6.8 (2.2) patients (p=0.22), but were significant at follow-up between AC 4.2 (2.7) and NLLI 6.0 (2.6) (p=0.03) groups. The percent of responders differed significantly between AC 57.4% and NED 20% groups (p=0.002). MEDD increased by 17.2 mg in AC, 40.9 mg in NED, and 18.1mg in NLLI patients (p=0.88).Benzodiazepine use was significantly more frequent in the NLLI group than the AC (p=0.025) and NED (p=0.002) groups. Although median pain scores improved at follow-up, less than half of patients were responders. Patients with AC had a significantly better response rate than NED patients and a lower pain score than NLLI patients at follow-up.
Fainsinger, R. L.; Bruera, E.; MacMillan, K.
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
Peirano, Gabriela P; Mammana, Guillermo P; Bertolino, Mariela S; Pastrana, Tania; Vega, Gloria F; Russo, Jorgelina; Varela, Gabriela; Vignaroli, Ernesto; Ruggiero, Raúl; Armesto, Arnaldo; Camerano, Gabriela; Dran, Graciela
The use of methadone for cancer pain is limited by the need of expertise and close titration due to variable half-life. Yet, it is a helpful palliative strategy in low-resources countries given its long-acting effect at low cost and worth additional study. Our aim was to describe the prescription and outcomes of methadone as a first-line treatment for cancer pain in a tertiary palliative care unit (PCU) in Argentina. Retrospective review of medical records of patients with moderate to severe cancer pain seen at the PCU in 1-year period, who initiated strong opioids at the first consultation. Data collected during the first month of treatment included disease and pain characteristics, initial and final opioid type and dose and need for opioid rotation. Methadone was the most frequent opioid both at the initial and last assessment (71 and 66 % of the prescriptions). In all, treatment with strong opioids provided considerable decrease in pain intensity (p < 0.001) with low and stable opioid dose. Median and interquartile range (IR) of oral morphine equivalent daily dose (OMEDD) was 26 (16-32) and 39 (32-55) mg for initial and final assessments, respectively (p = 0.3). In patients initiated with methadone, the median (IR) daily methadone dose was 5 (4-6) mg at first and 7.5 (6-10) mg at final assessment, and the median (IR) index of opioid escalation was 0 (0-4) mg; (p < 0.05). Patients on methadone underwent less percentage of opioid rotation (15 versus 50 %; p < 0.001) and longer time to rotation (20.6 ± 4.4 versus 9.0 ± 2.7 days; p < 0.001) than patients on other opioids. Results indicate the preference of methadone as first-line strong opioid treatment in a PCU, providing good pain relief at low doses with low need for rotation. Several considerations about the costs of strong opioids in the region are given.
The implementation of paediatric palliative care aims to fulfil objectives regarding the support provided for the child and his/her family in all aspects of care. It is guided by regulations and recommendations relating to pain relief, quality of life and support for families.
Kettler, Dietrich; Nauck, Friedemann
To summarize various developments related to palliative care, especially related to ethical issues. To emphasize the involvement of anaesthesiology in palliative care. Euthanasia has been legalized in Belgium, the Netherlands and Luxemburg (BENELUX countries). A group from Belgium has now proposed using euthanasia in patients in whom palliative care has been deemed 'futile'. This practice of so-called 'integral palliative care' is strongly rejected in a study from Germany. Palliative sedation is an ethically different approach with no intention to kill the patient. The European Association of Palliative Care has proposed a framework for individual guidelines for palliative sedation. The important role of anaesthesiology in palliative care teams is emphasized. Palliative care is a powerful approach to patient care during terminal illness, emphasizing quality of life even if it may shorten the length of life. Traditionally, palliative care has been contrasted with active euthanasia, but a group from Belgium has challenged this concept recently, advocating the use of euthanasia in circumstances in which palliative care has become 'futile'. This new approach led to strong reactions by a group from Germany, stressing that killing on demand in palliative care should under no circumstances be justified. In contrast, palliative sedation is a common method in special cases to reduce intractable symptoms. A new framework for palliative sedation produced by the European Association of Palliative Care may encourage institutions to set up their own palliative sedation guidelines. Worldwide, anaesthesiologists have a significant role in palliative care due to their unique complex expertise mainly in pain therapy and including transient sedation of patients.
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p <0.001) and well-being (F = 6.41; p = 0.01). This effect was supported by a significantly greater increase in high-frequency oscillations of the heart rate (F = 8.13; p = 0.01). Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Trauma remains a leading cause of morbidity and mortality in the United States. Despite the aggressive and heroic nature of trauma care, including trauma surgery, 10% to 20% of patients admitted to trauma intensive care units die. As the population continues to age, it is predicted that by 2050, approximately 40% of those experiencing traumatic injury will be older than 65 years. For multiple reasons, people in this age group who experience trauma are at greater risk for death. Palliative care is the specialty of health care that provides care for patients with serious, life-threatening, or life-limiting illness or injury, regardless of the stage of disease or treatment. The goal of palliative care is to reduce or alleviate suffering through expert pain and symptom management, as well as assistance with decision making. The integration of palliative and trauma care can assist and support patients and families through stressful, often life-changing times, regardless of the final outcome.
Gwyther, Liz; Brennan, Frank; Harding, Richard
The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as
Labson, Margherita C; Sacco, Michele M; Weissman, David E; Gornet, Betsy; Stuart, Brad
The focus of palliative care is to alleviate pain and suffering for patients, potentially while they concurrently pursue life-prolonging or curative therapy. The potential breadth of palliative care is recognized by the Medicare program, but the Medicare hospice benefit is narrowly defined and limited to care that is focused on comfort and not on cure. Any organization or setting that has been accredited or certified to provide health care may provide palliative care. Home health agencies are highly attuned to patients' need for palliative care, and often provide palliative care for patients who are ineligible for hospice or have chosen not to enroll in it. Two home health-based programs have reported improved patient satisfaction, better utilization of services, and significant cost savings with palliative care. Moving the focus of care from the hospital to the home and community can be achieved with integrated care and can be facilitated by changes in government policy.
Tateno, Yuki; Ishikawa, Shizukiyo
Recent studies show that a clinical pathway (CP) optimizes pain management in palliative care; however, studies on CPs in home palliative care, especially in remote locations, are scarce. Physicians performing palliative care in remote areas frequently face characteristic difficulties. The CP is an effective tool to overcome these difficulties. This study evaluates the effectiveness of the CP in home palliative care on a remote island. This study reviewed 24 patients (17 in a pre-CP group and seven in a post-CP group) who received home palliative care on Kozu Island in south-eastern Japan from April 2006 to December 2011. To evaluate CP effectiveness, the authors compared patients in whom a rescue opioid was set, and nonsteroidal anti- inflammatory drugs (NSAIDs), antiemetics, and laxatives drug were used with opioids in the post-CP group compared with those in the pre-CP group. To assess pain management quality, authors compared Pain Management Index (PMI) scores on day 1 (baseline); day 8 following CP initiation; and within 3 days before death. The proportion of patients in whom a rescue dose was set was 100% in the post-CP group versus 46% in the pre-CP group (p=0.04). The proportion of patients in whom NSAIDs were used with opioids was 100% in the post-CP group versus 18% in the pre-CP group (p=0.002). The proportion of patients in whom antiemetics and laxatives were used with opioids was 100% in the post-CP group versus 27% in the pre-CP group (p=0.009). Baseline PMI scores were not significantly different between groups (-1 in post-CP group versus 0 in pre-CP group, p=0.1); however, PMI scores at day 8 and within 3 days before death were significantly higher in the post-CP group (1.9 and 2.9) than in the pre-CP group (0.2 and -0.4) (p=0.007 and p=0.0005, respectively). Implementation of a CP for pain management in home palliative care in remote locations could improve compliance with the WHO pain
Gray, Alan; Ezzat, Adnan
The increasing life expectancy in Saudi Arabia will be accompanied by an alteration of the patterns of disease similar to that in Western countries. One of these will be cancer, the second leading cause of death in the west at present, where 1:3 people develop cancer during their lifetime and 1:4 die of it. Cancer deaths are rarely easy. The distress particularly the pain it can cause is legendary. Palliative care is the care and study of patients with active progressive far advanced disease, where cure is impossible, the prognosis predictably short, and the focus of care is the patient's quality of life. A Palliative Care Program has been developed at KFSH&RC, since 1991. This has broadened the spectrum of health services available to cancer patients. Palliative care needs to be more widely available in the kingdom to relieve an important cause of human suffering. PMID:23008572
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)
“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
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak
The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.
Restau, Jame; Green, Pamela
Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of life-sustaining measures provided in the intensive care setting. The integration of palliative care into the intensive care unit (ICU) provides care, comfort, and planning for patients, families, and the medical staff to help decrease the emotional, spiritual, and psychological stress of a patient's death. Quality measures for palliative care in the ICU are discussed along with case studies to demonstrate how this integration is beneficial for a patient and family. Integrating palliative care into the ICU is also examined in regards to the complex adaptive system.
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.
Codeine is designated as one of the essential medicines of palliative care for symptoms such as pain and diarrhea. Essential drugs for palliative care are drugs that are effective for the treatment of common symptoms in palliative medicine, easily available, and are affordable. Codeine is recommended for the management of mild to moderate pain and is available as a combination product or as a stand-alone opioid. It is a prodrug and exhibits an affinity to micro-opioid receptors 200 times lower than morphine. Codeine is metabolized in the liver to inactive metabolites, which account for 90 percent of the transformed product, and morphine, which accounts for 10 percent of the transformed product and provides the main analgesic effect. The production of morphine is dependent on cytochrome oxidase 2D6 enzyme activity, which may not be fully active in some populations. The purpose of this review is to examine the efficacy of codeine for common symptoms encountered in palliative medicine, which has led to its designation as an essential medicine for palliative care.
This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH), AIIMS, New Delhi.
López-Saca, José Mario; López-Picazo, José Maria; Larumbe, Ana; Urdíroz, Juli; Centeno, Carlos
Within an oncology setting, certain chemotherapy drugs, such as cisplatin, may lead to magnesium loss causing nephropathy. Neurological and cardiovascular symptoms caused by hypomagnesaemia are well known. The relationship between serious hypomagnesemia and severe pain is not well documented but nevertheless, when faced with unexplained episodes of pain which do not respond to powerful analgesics, it is important to review blood magnesium levels. We present two cases of opioid-refractory pain attacks. Patients received drugs which have been linked to hypomagnesemia. In both cases, endovenous magnesium replacement led to a drastic improvement in pain management.
1. Cervical cancer is the most frequent cancer in females and also the most frequent among female genital cancers. 2. Ever though the modality of diagnostic procedures for early detection has improved, in fact most of the patients present in the late stages, so the disease is already incurable, and palliative care is really needed. 3. Palliative care is needed not only for the terminally ill patients, but can be started at the time the cancer is diagnosed. 4. Palliative care is a multidisciplinary approach requiring teamwork. 5. Palliative care in Indonesia, especially in Dr. Soetomo Hospital, is a new modality in the fight against cancer, so we suffer many disadvantages, e.g., disability, limitation, lack of experience. However, such problems will stimulate the team to learn more.
Roberto, Anna; Deandrea, Silvia; Greco, Maria Teresa; Corli, Oscar; Negri, Eva; Pizzuto, Massimo; Ruggeri, Fabrizio
Because of the increasing body of literature on neuropathic cancer pain (NCP), an accurate estimate of its prevalence requires recurring updates. To provide this estimate using information from a systematic review and a survey. Using MEDLINE, Embase, and a previous review, we searched for studies published up to 2014 reporting data on NCP prevalence in adult cancer populations. Pooled prevalence rates from observational prospective studies were computed. The association between NCP prevalence and possible predictors was investigated for oncology and palliative settings. Prevalence rates were extracted from a questionnaire answered by 137 physicians working in 50 Italian centers of palliative care. Estimates from studies conducted in palliative settings and from the experts were analyzed separately and eventually pooled with an informative Bayesian random-effect model. Twenty-nine observational studies were identified. The overall pooled prevalence was 31.2%, with high heterogeneity; similar figures were observed when oncology and palliative settings were individually considered. A slightly higher prevalence of NCP was detected for hospice/inpatients as compared to outpatients, in both settings. The mean NCP prevalence reported by the survey experts was 44.2%; the pooled Bayesian estimate for the palliative setting corresponded to 43.0% (95% CI: 40.0-46.0). The subgroup with the lowest heterogeneity and where the literature and experts' estimates were closest is hospice/inpatients, with a pooled Bayesian prevalence rate of 34.9% (95% CI: 29.9-41.0). The systematic review and the survey suggest that more than one in three patients with cancer pain also experiences NCP. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Simone, Charles B; Vapiwala, Neha; Hampshire, Margaret K; Metz, James M
Little data exist on assessing pain medication utilization among lung cancer patients or on the reasons they fail to receive optimal analgesic treatment. This study evaluates those reasons and investigates perceived causes of pain among individuals with lung cancer. An institutional review board-approved Internet-based questionnaire was posted on http://www.oncolink.org that included 22 queries evaluating analgesic utilization, pain control, and attitudes regarding analgesics. Between November 2005 and July 2008, 90 respondents with lung malignancies participated. Respondents were Caucasian (89 percent), male (54 percent), and had non-small-cell lung cancer (79 percent), small-cell lung cancer (12 percent), or mesothelioma (9 percent). Respondents underwent surgery (48 percent), chemotherapy (58 percent), and radiotherapy (44 percent). Most respondents (92 percent) reported experiencing pain, with 52 percent attributing pain directly to cancer, 38 percent to cancer treatment, and 67 percent unsure of the primary cause. Among respondents experiencing pain, 33 percent did not use analgesics. Analgesic utilization was less in men (p = 0.050) but did not differ by minority status (p = 0.127), education level (p = 0.37), or lung cancer histology (p = 0.134). Analgesic use was higher in subjects receiving radiotherapy (p = 0.002) and chemotherapy (p = 0.013) but not surgery (p = 0.16). Reasons for not taking analgesics included fear of addiction/dependence (76 percent), healthcare providers not recommending medications (71 percent), and inability to pay for analgesics (56 percent). Participants pursued physical therapy (76 percent) and other complementary modalities (24 percent) for pain control. Many individuals with lung cancer perceive pain from both their disease and their cancer treatment. However, some study respondents did not use analgesics due to concerns of addiction, cost, or their healthcare providers not recommending analgesics. Medicalprofessionals
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
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.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
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
Jacobsen, Ramune; Samsanaviciene, Jurgita; Liubarskiene, Zita; Sjøgren, Per; Møldrup, Claus; Christrup, Lona; Sciupokas, Arunas; Hansen, Ole Bo
The prevalence of cancer-related pain is high despite available guidelines for the effective assessment and management of that pain. Barriers to the use of opioid analgesics partially cause undertreatment of cancer pain. The aim of this study was to compare pain management outcomes and patient-related barriers to cancer pain management in patient samples from Denmark and Lithuania. Thirty-three Danish and 30 Lithuanian patients responded to, respectively, Danish and Lithuanian versions of the Brief Pain Inventory pain scale, the Barriers Questionnaire II, the Hospital Anxiety and Depression Scale, the Specific Questionnaire On Pain Communication, and the Medication Adherence Report Scale. Emotional distress and patient attitudes toward opioid analgesics in cancer patient samples from both countries explained pain management outcomes in the multivariate regression models. Pain relief and pain medication adherence were better in Denmark, and the country of origin significantly explained the difference in the regression models for these outcomes. In conclusion, interventions in emotional distress and patient attitudes toward opioid analgesics may result in better pain management outcomes generally, whereas poor adherence to pain medication and poor pain relief appear to be more country-specific problems.
As a result of limited access to antiretroviral treatment, many South Africans die yearly of AIDS. It is important that the end-of-life needs of these people be met. This article examines the major challenges involved in providing quality end-of-life care to people with AIDS in South Africa. Published reports are reviewed, as is the author's experience living and working in KwaZulu-Natal, South Africa. The issues discussed include the nature of the South African health care system, with emphasis on the scarcity of palliative care resources for AIDS patients, ineffective control of pain, models of care such as the integrated community-based home care model that relies heavily on community caregivers to meet the needs of people dying of AIDS, the living conditions of AIDS patients and their families, and AIDS-related stigma. Broad recommendations are presented for improving palliative care services for people with AIDS in the South African context.
Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu
We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff.
Knies, Andrea K; Hwang, David Y
Many neurocritically ill patients and their families have high amounts of palliative care needs. Multiple professional societies relevant to neurocritical care have released consensus statements on meeting palliative care needs in neuroscience intensive care units. In this review, the authors discuss the ongoing debate regarding what model of palliative care delivery is optimal, focus on the process of shared decision making during goals-of-care discussions, and briefly comment on transitions from intensive care to comfort care. Regardless of an institution's model of palliative care practice, every neurocritical care clinician should possess core competencies necessary to provide basic, integrative palliative care for neurocritically ill patients. Given the high proportion of neurocritically ill patients who lack decision-making capacity, communication skills that enable clinicians to facilitate shared decision making with patients' surrogates are of particular relevance, especially when the limitation of life support is in the discussion. High-quality decision aids to assist neurocritical care teams and surrogate decision makers during common goals-of-care discussions may have the potential for further promotion of best palliative care practices. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.
Feio, Madalena; Sapeta, Paula
Xerostomia is the subjective feeling of mouth dryness, caused or not by function lowering of salivary glands, with decrease of saliva quality or quantity. It's a frequent symptom in palliative care patients and its prevalence is referred to be 60% to 88% in advanced and progressive oncological disease patients. Xerostomia has physical, social and psychological consequences. Saliva plays an important role in maintaining the best physiological conditions of mouth. Besides humidifying the oral cavity tissues, its lubricating properties help swallowing, talking and prevents other damages caused by mechanical and noxious microbiological agents. Xerostomia is caused by three basic mechanisms: factors that compromise the salivary centre, factors related to the autonomic stimulation or factors related to salivary glands themselves. The diagnosis is mainly clinical. Mouth condition must be thoroughly evaluated. If justified, a quantitative evaluation of saliva secretion, in rest and under stimulation, might be done. The treatment must be oriented by aetiology and directed towards the disease effects in patient comfort and quality of life. During treatment, the use of xerogenic drugs should be controlled, hydration should be promoted and other symptom control measures improved. The symptomatic treatment has three pathways: the increasing of saliva production by mechanical, gustatory or pharmacological stimulation; the using of saliva substitutes and the improving of active mouth care. Mechanical stimulation is obtained by chewing gum and gustatory stimulation may be reached by sucking Vitamin C tablets. Pilocarpine is the available drug to improve salivation. A soft diet must be advised, hard and dry food, tobacco and alcoholic beverages should be avoided. It's important that health workers teach patients with xerostomia the best way to get relief and the measures to prevent its complications that could, even more, compromise their quality of life.
Zaporowska-Stachowiak, Iwona; Kowalski, Grzegorz; Łuczak, Jacek; Kosicka, Katarzyna; Kotlinska-Lemieszek, Aleksandra; Sopata, Maciej; Główka, Franciszek
Background Unacceptable adverse effects, contraindications to and/or ineffectiveness of World Health Organization step III “pain ladder” drugs causes needless suffering among a population of cancer patients. Successful management of severe cancer pain may require invasive treatment. However, a patient’s refusal of an invasive procedure necessitates that clinicians consider alternative options. Objective Intrathecal bupivacaine delivery as a viable treatment of intractable pain is well documented. There are no data on rectal bupivacaine use in cancer patients or in the treatment of cancer tenesmoid pain. This study aims to demonstrate that bupivacaine administered rectally could be a step in between the current treatment options for intractable cancer pain (conventional/conservative analgesia or invasive procedures), and to evaluate the effect of the mode of administration (intrathecal versus rectal) on the bupivacaine plasma concentration. Cases We present two Caucasian, elderly inpatients admitted to hospice due to intractable rectal/tenesmoid pain. The first case is a female with vulvar cancer, and malignant infiltration of the rectum/vagina. Bupivacaine was used intrathecally (0.25–0.5%, 1–2 mL every 6 hours). The second case is a female with ovarian cancer and malignant rectal infiltration. Bupivacaine was adminstered rectally (0.05–0.1%, 100 mL every 4.5–11 hours). Methods Total bupivacaine plasma concentrations were determined using the high-performance liquid chromatography-ultraviolet method. Results Effective pain control was achieved with intrathecal bupivacaine (0.077–0.154 mg·kg−1) and bupivacaine in enema (1.820 mg·kg−1). Intrathecal bupivacaine (0.5%, 2 mL) caused a drop in blood pressure; other side effects were absent in both cases. Total plasma bupivacaine concentrations following intrathecal and rectal bupivacaine application did not exceed 317.2 ng·mL−1 and 235.7 ng·mL−1, respectively. Bupivacaine elimination was
Lentz, Judy C
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.
Ganzel, Barbara L
This review highlights the need to integrate trauma-informed practices into hospice and palliative care. The pervasiveness of psychological trauma exposure has been established in the general population and among the elderly adults. Moreover, there is emerging evidence for multiple additional opportunities for exposure to psychological trauma at or near the end of life. For example, many people experience intensive medical interventions prior to their admission to hospice and/or palliative care, and there is increasing recognition that these interventions may be traumatic. These and related opportunities for trauma exposure may combine synergistically at the end of life, particularly in the presence of pain, anxiety, delirium, dementia, or ordinary old age. This, in turn, can negatively affect patient mental health, well-being, behavior, and reported experience of pain. This review closes with suggestions for future research and a call for universal assessment of psychological trauma history and symptoms in hospice and palliative care patients, along with the development of palliative trauma intervention strategies appropriate to these populations. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: email@example.com.
Zaporowska-Stachowiak, Iwona; Kotlinska-Lemieszek, Aleksandra; Kowalski, Grzegorz; Kosicka, Katarzyna; Hoffmann, Karolina; Główka, Franciszek; Luczak, Jacek
Optimal symptoms control in advanced cancer disease, with refractory to conventional pain treatment, needs an interventional procedure. This paper presents coadministration of local anesthetic (LA) via paravertebral blockade (PVB) as the alternative to an unsuccessful subcutaneous fentanyl pain control in a 71-year old cancer patient with pathological fracture of femoral neck, bone metastases, and contraindications to morphine. Bupivacaine in continuous infusion (0.25%, 5 mL · hour(-1)) or in boluses (10 mL of 0.125%-0.5% solution), used for lumbar PVB, resulted in pain relief, decreased demand for opioids, and led to better social interactions. The factors contributing to an increased risk of systemic toxicity from LA in the patient were: renal impairment; heart failure; hypoalbuminemia; hypocalcemia; and a complex therapy with possible drug-drug interactions. These factors were taken into consideration during treatment. Bupivacaine's side effects were absent. Coadministered drugs could mask LA's toxicity. Elevated plasma α1-acid glycoprotein levels were a protective factor. To evaluate the benefit-risk ratio of the PVB treatment in boluses and in constant infusion, bupivacaine serum levels were determined and the drug plasma half-lives were calculated. Bupivacaine's elimination was slower when administered in constant infusion than in boluses (t½ = 7.80 hours versus 2.64 hours). Total drug serum concentrations remained within the safe ranges during the whole treatment course (22.9-927.4 ng mL(-1)). In the case presented, lumbar PVB with bupivacaine in boluses (≤ 137.5 mg · 24 hours(-1)) was an easy to perform, safe, effective method for pain control. Bupivacaine in continuous infusion (≤150 mg · 12 hours(-1)) had an acceptable risk-benefits ratio, but was ineffective.
Perri, Giulia-Anna; Yeung, Herman; Green, Yoel; Bezant, Abby; Lee, Carman; Berall, Anna; Karuza, Jurgis; Khosravani, Houman
Palliative care is often initiated late for patients with end stage liver disease (ESLD) with pain being a common morbidity that is under-treated throughout the disease trajectory. When admitted to a palliative care unit (PCU), nurses play a pivotal role and must be highly informed to ensure effective pain management. The aim of this study is to determine the baseline level of knowledge and attitudes of PCU nurses regarding pain management in patients with ESLD. A descriptive, cross-sectional self-administered survey design was used for this study. The sample comprised 35 PCU nurses working at a continuing chronic care facility in Toronto, Ontario, Canada. Data on the knowledge and attitudes of the nurses regarding pain management in patients with ESLD, was obtained using a modified version of the "Nurses Knowledge and Attitudes Survey Regarding Pain" (NKASRP) tool. Thirty-one PCU nurses were included for the analysis, giving a response rate of 89%. The mean total percentage score for the nurses on the modified version of the NKASRP was 72%. Only 26% of the nurse participants obtained a passing score of 80% or greater. There were no significant differences in mean total scores by age, gender, years of nursing experience or education level. The findings of this study provide important information about the inadequate knowledge and attitude in nurses regarding pain management for patients with ESLD. It is suggested that targeted educational programs and quality improvement initiatives in pain management for patients with ESLD could improve knowledge and attitudes for PCU nurses.
Salamonde, Giselane Lacerda Figueredo; Verçosa, Nubia; Barrucand, Louis; Costa, Antônio Filpi Coimbra da
The main goal of palliative care is the control of pain and other symptoms in patients with chronic diseases without possibility of cure, especially advanced cancer. About 75% of patients with advanced cancer experience severe pain, which interferes with quality of life and, according to the WHO, it is considered a worldwide medical emergency. This study evaluated the profile of oncology patients enrolled in the Chronic Pain Treatment and Palliative Care Program of the HUCFF/FM/UFRJ, focusing on the role of the anesthesiologist, medications used, humanization of the treatment, and improvement in patient's quality of life. The 2003-oncology patients' charts were analyzed retrospectively. Several parameters were compared: age, race, gender, preexisting conditions organ the cancer originated from, type of pain and other symptoms, medications, hospital routine, and end of treatment. The types of pain included nociceptive, neuropathic, and incidental, which were evaluated using the unidimensional faces pain rating scale. In the first week, patients were treated with home-based patient controlled analgesia (PCA) with oral methadone. After this period, the patient returned to the clinic to calculate the regular dose of methadone. Other opioids used included codeine, tramadol, morphine, and oxycodone. Besides pain, patients experienced: constipation, vomiting, delirium, sleep disturbances, and dyspnea. Neuroleptics, corticosteroids, and laxatives were also used as adjuvant therapy. Patient controlled analgesia with methadone is safe and effective, since there were no significant side effects. The clinical and pharmacological knowledge of the anesthesiologist in the multidisciplinary team provided for better patient care, relief of symptoms, and humanization of the final stages of life.
Smith, Alexander K; Thai, Julie N; Bakitas, Marie A; Meier, Diane E; Spragens, Lynn H; Temel, Jennifer S; Weissman, David E; Rabow, Michael W
Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Our objective was to obtain in-depth information about palliative care clinics. We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked "pain management" and "determining goals of care" as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices
Morita, Tatsuya; Fujimoto, Koji; Imura, Chizuru; Nanba, Miki; Fukumoto, Naoko; Itoh, Tomoko
Knowledge and skill deficits about palliative care in medical professionals are among the most common barriers to quality palliative care. This study in a Japanese regional cancer center was conducted to clarify nurses' self-reported practices, confidence, and knowledge, and the changes in these parameters after the 1-year educational and clinical activity of a palliative care team. Questionnaires were distributed to 134 nurses before and after a palliative care team conducted 6-topic educational programs and clinical consultation activity throughout the year. The nurses were asked to report their practices, confidence, and knowledge about palliative care in 5 fields (pain, dyspnea, delirium, communication, and dying-phase). In some areas of palliative care, hospital nurses did not adhere to recommended practices, had knowledge deficits, and were not generally confident with palliative care practices. However, daily palliative care team activities, including educational programs and clinical consultation service, could improve their practice and knowledge levels.
Thai, Julie N.; Bakitas, Marie A.; Meier, Diane E.; Spragens, Lynn H.; Temel, Jennifer S.; Weissman, David E.; Rabow, Michael W.
Abstract Background Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Objective Our objective was to obtain in-depth information about palliative care clinics. Methods We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Results Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked “pain management” and “determining goals of care” as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Conclusions Once established, outpatient palliative care practices
Hermsen, M A; ten Have, H A
With the growth of palliative care services, interest in moral issues also seems to be growing. However, we need to know which moral issues are specific to palliative care. The first step in answering this is to consider the moral concerns raised and discussed by the palliative care community itself. This article presents a bibliographical analysis of moral problems, first by selecting the problems identified as moral problems in the leading palliative care journals, and then by classifying these into different types.
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This article discusses fatigue in patients receiving palliative care. The article initially considers the prevalence of fatigue in different groups of palliative care patients, then addresses how it manifests before reviewing how it can be assessed and managed. The focus of the article is on palliative care but it draws on, and has relevance for, chronic disease more widely.
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
Poppel, David M; Cohen, Lewis M; Germain, Michael J
Despite ongoing technological advances, patients with end-stage renal disease (ESRD) have a mortality rate of approximately 23% per year, and comorbid cardiovascular, cerebrovascular, and peripheral vascular disorders often make life on dialysis an ordeal. This patient population needs an improved approach to symptom assessment and control, as well as advance care planning and high-quality palliative care. Families need support during the lifetime and after the death of their loved ones. To address these needs, the Renal Palliative Care Initiative (RPCI) was instituted at Baystate Medical Center, a large tertiary care hospital, and at eight dialysis clinics in the Connecticut River Valley. With the cooperation of a large nephrology practice, the Western New England Renal and Transplant Associates, a core group of physicians, nurses, and social workers were trained in palliative medicine, and charged with the goals of developing and implementing innovative interventions. The RPCI's programs include symptom management protocols, advance care planning, and bereavement services for families and staff. The Initiative is increasing completion of formal advance directives by the patient population, while staff and families are particularly pleased with annual renal memorial services. The RPCI experience has much to offer the practice of nephrology, and it is relevant to ongoing efforts to extend palliative medicine beyond the traditional focus on cancer and AIDS.
Downing, J; Marston, J; Muckaden, Ma; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P
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.
Selwyn, Peter A
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
Jain, Nelia; Wallhagen, Margaret L.
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
Best, Megan; Butow, Phyllis; Olver, Ian
A previous survey of the Multinational Association of Supportive Care in Cancer (MASCC) members found low frequency of spiritual care provision. We hypothesized that physicians with special training in palliative medicine would demonstrate an increased sense of responsibility for and higher self-reported adequacy to provide spiritual care to patients than health professionals with general training. We surveyed members of the Australian and New Zealand Palliative Medicine Society (ANZSPM) to ascertain their spiritual care practices. We sent 445 e-mails on four occasions, inviting members to complete the online survey. Tabulated results were analyzed to describe the results. One hundred and fifty-eight members (35.5 %) responded. Physicians working primarily in palliative care comprised the majority (95 %) of the sample. Significantly more of the ANZSPM than MASCC respondents had previously received training in spiritual care and had pursued training in the previous 2 years. There was a significant difference between the two groups with regard to interest in and self-reported ability to provide spiritual care. Those who believed it was their responsibility to provide spiritual care were more likely to have had training, feel they could adequately provide spiritual care, and were more likely to refer patients if they could not provide spiritual care themselves. Training in spiritual care was more common in healthcare workers who had received training in palliative care. ANZSPM members gave higher scores for both the importance of spiritual care and self-reported ability to provide it compared to MASCC members.
Hoang, Ba X; Le, Bao T; Tran, Hau D; Hoang, Cuong; Tran, Hung Q; Tran, Dao M; Pham, Cu Q; Pham, Tuan D; Ha, Trung V; Bui, Nga T; Shaw, D Graeme
Prostate cancer (adenocarcinoma of the prostate) is the most widespread cancer in men. It causes significant suffering and mortality due to metastatic disease. The main therapy for metastatic prostate cancer (MPC) includes androgen manipulation, chemotherapy, and radiotherapy and/or radioisotopes. However, these therapeutic approaches are considered palliative at this stage, and their significant side effects can cause further decline in patients' quality of life and increase non-cancer-related morbidity/mortality. In this study, the authors have used the infusion of dimethyl sulfoxide-sodium bicarbonate (DMSO-SB) to treat 18 patients with MPC. The 90-day follow-up of the patients having undergone the proposed therapeutic regimen showed significant improvement in clinical symptoms, blood and biochemistry tests, and quality of life. There were no major side effects from the treatment. In searching for new and better methods for palliative treatment and pain relief, this study strongly suggested therapy with DMSO-SB infusions could provide a rational alternative to conventional treatment for patients with MPC.
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Perrin, Kathleen Ouimet; Kazanowski, Mary
Palliative care consultations for patients with life-threatening illnesses provide benefits for the patients and their families as well as for the health care team. Patients have better quality of life and live longer but cost the health care system less. Still, many patients are not offered the opportunity to receive a palliative care consultation. Barriers to palliative care consultation for patients in critical care units include misunderstandings about palliative care and not having agreed upon criteria for referral. Critical care nurses can assist in overcoming these barriers.
Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana
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
Dietl, M; Korczak, D
In order to characterize the pain care situation in Germany, a health technology assessment (HTA) was carried out on behalf of the German Institute for Medical Documentation and Information (DIMDI). An up to date literature search was conducted using the database Pubmed. Reviews and studies which describe the pain care in Germany were included. The Physicians' Health Insurance Associations conducted an additional database survey. Overall 12 studies were included and the results of the analysis showed that there is a lack of some 2,500 curative pain care institutions in Germany. There is also clear under use of inpatient and outpatient institutions in palliative care. The results prove the benefits of the interdisciplinary approach in pain care. Further development should strive to increase the provision of pain and palliative care. There is a great need for pain care research in order to concrete the needs.
Wells, M; Dryden, H; Guild, P; Levack, P; Farrer, K; Mowat, P
The principles of cancer pain management are well established, but evidence suggests that these are not incorporated into daily practice and patients are still in pain. Deficiencies in knowledge and inappropriate attitudes towards the use of opioids may partially explain why the management of cancer pain is still such a widespread problem. This study assessed the knowledge and attitudes of 135 nursing and medical staff working in a surgical unit, before and after working with a newly established Hospital Palliative Care Team. The baseline survey highlighted the existence of a number of myths and misconceptions in relation to opioid use. Results of the follow-up survey indicated that the knowledge and attitudes of doctors and nurses had improved after working with the team, but that this probably occurred as a result of good working relationships and case discussions rather than through formal teaching. The study provided a useful method of identifying deficiencies in knowledge and attitude among staff, and helped to raise awareness of the problem of cancer pain management. Our challenge now is to work with staff to ensure that positive changes in knowledge and attitudes are translated into the everyday practice of hospital nurses and doctors caring for patients with cancer.
Dietrich, Cordula; Teut, M; Samwel, Kakuko Lopoyetum; Narayanasamy, S; Rathapillil, T; Thathews, G
The Body Tambura is a recently invented stringed instrument that is used for receptive music therapy designed to be placed and attached on the human body. The aim of this study was to record perceived effects of a treatment with the Body Tambura on palliative care patients with special reference to pain. A prospective case study was carried out with patients of St. Joseph's Hospice for Dying Destitute in Dindigul/South India. Patients were treated with a treatment after baseline assessment and also on the next day. Outcomes were measured quantitatively by using a numeric rating scale (0-10, 10 maximum intensity of pain felt) at baseline, directly after treatment, and the day after the treatment to determine the intensity of the pain. Ten patients (five women and five men) participated in the study. The majority described the therapy as a pleasant experience. The pain intensity at baseline was reduced from 8.3 ± standard deviation (SD) 1.16 to 4.6 ± 1.52 at day 1 and from 4.6 ± 2.07 to 2.4 ± 1.58 at day 2. A clinically relevant pain reduction was described as short time outcome; the therapy was received and perceived well. Forthcoming research should include a control group, randomization, a larger number of participants, and a longer period of treatment.
Dietrich, Cordula; Teut, M; Samwel, Kakuko Lopoyetum; Narayanasamy, S; Rathapillil, T; Thathews, G
Background: The Body Tambura is a recently invented stringed instrument that is used for receptive music therapy designed to be placed and attached on the human body. The aim of this study was to record perceived effects of a treatment with the Body Tambura on palliative care patients with special reference to pain. Materials and Methods: A prospective case study was carried out with patients of St. Joseph's Hospice for Dying Destitute in Dindigul/South India. Patients were treated with a treatment after baseline assessment and also on the next day. Outcomes were measured quantitatively by using a numeric rating scale (0–10, 10 maximum intensity of pain felt) at baseline, directly after treatment, and the day after the treatment to determine the intensity of the pain. Results: Ten patients (five women and five men) participated in the study. The majority described the therapy as a pleasant experience. The pain intensity at baseline was reduced from 8.3 ± standard deviation (SD) 1.16 to 4.6 ± 1.52 at day 1 and from 4.6 ± 2.07 to 2.4 ± 1.58 at day 2. Conclusion: A clinically relevant pain reduction was described as short time outcome; the therapy was received and perceived well. Forthcoming research should include a control group, randomization, a larger number of participants, and a longer period of treatment. PMID:26009680
Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro
Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort.
Munro, S.; Mount, B.
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
Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar
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
Glare, P A
The World Health Organisation estimates that over 1.5 million human immunodeficiency virus (HIV) infections have occurred to date in South and South East Asia. As most of these patients will develop acquired immunodeficiency syndrome (AIDS) in the coming decade, health services in the region face a major challenge in meeting their needs. While treatments are available which prolong the lives of patients with AIDS, most will eventually die of their disease, and attention needs to be given to controlling pain and other symptoms and improving quality of life. Providing palliative care for patients with AIDS raises complex issues not normally encountered in traditional palliative care practice. Based on the author's experience with the Central Sydney Area Palliative Care Service in Sydney, Australia, this paper discusses the problems and practicalities involved in palliative care for adult patients with advanced AIDS, such as clinical decision making, pain and other symptom control, psychosocial issues and terminal care. Representative case histories are described to illustrate how the palliative care physician can start to approach some of the dilemmas created by this demanding yet growing area of palliative care.
Frković, Aleksandra; Bosković, Zvonimir
Palliative care is frequently discussed as an alternative or a counter-balance to euthanasia. In this paper, palliative care is considered as a response to dysthanasia or therapeutic persistence. First, the main features of dysthanasia are mentioned: the accent is put on different questions: until when to implement therapeutic persistence? When does the treatment become useless? What is a permanent vegetative condition? Then, palliative care, the scope of which is to achieve the best life quality for the patient and his family is discussed. The hospice and its care are emphasized, analyzing the international guidelines on the topics at the end of life. International palliative care recommendations are analyzed; special attention is paid on the codex of medical ethics and deontology and its regulations concerning palliative care. Conclusion summarizes some thoughts about dysthanasia and palliative care.
e-Health has the potential to improve pediatric palliative care. e-Health initiatives use the Internet or health information technology to improve quality of care and have the potential to decrease costs by reducing medical errors, reducing duplication of services, improving access to diagnostic and laboratory results, and improving communication between providers and patients, and so on. The majority of e-health initiatives are for adults and only a limited amount of evidence exists in the literature on e-health interventions in palliative care that are focused on pediatrics. To explore what role e-health could play in pediatric palliative care programs, this article aims to describe the Internet use in general in the United States and in palliative care, describe the use of health information technology in general in the United States and in palliative care, and suggest areas in pediatric palliative care that might benefit from e-health interventions.
Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.
To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care. Review articles, and government and organizational reports. Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior. Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment, or the determination of medical futility.
Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu
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.
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708
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
Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis
Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.
The paper overviews the role of systemic radionuclide therapy in patients with disseminated bone metastases. Most patients with bone metastases experience painful symptoms. Systemic radioisotope therapy is an alternative to traditional hemibody radiation in cases of multiple, diffuse metastases. Usually given as a single i.v. slow infusion it provides a pain relief beginning in one to three weeks, with a mean duration up to several months, depending on the kind of radioisotope applied. The paper overviews the role of unsealed source therapy with these bone-seeking radiopharmaceuticals in palliating pain, improving quality of life, indications, contraindications and complications of this therapy are discussed, as well as cost-benefit aspects.
Huffman, Joan L
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.
... Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care Who can receive this care? Anyone with a ... a package deal? No, there is no ‘palliative care’ benefit package Yes, hospice is a comprehensive benefit covered by Medicare and ...
Oleske, J M; Czarniecki, L
This article presents the essence of continuum of palliative and hospice care for HIV-infected children. Based on the principles of palliative care and the provision of hospice services, the relief of suffering has not always been available to most children with life-limiting illnesses. The palliative care ensures child's comfort and maximum function through the course of their illness. The guiding ethical principle of palliative care includes autonomy, beneficence, non-malfeasance, and justice. Thus, the family and child are full partners with the health care team in management decisions. Its benefit did not just be reserved for end-of-life care. It starts from the time an HIV-1 infected woman becomes pregnant through the course of disease and eventual death of her child. However, there were barriers in providing palliative care. One of which was the lack of appreciation towards acute and chronic pain associated with disease and painful procedures. Another thing was the social and economic barriers to the provisions of appropriate palliative care and hospital services, which also exist. A collaborative multidiscipline program will therefore provide the best environment in providing palliative and hospice care. To sum up, a child with life-limiting illnesses should receive palliative care and hospice services that give them the best quality of life and ease the burden of dying.
Mikan, Fukiko; Wada, Makoto; Yamada, Michiko; Takahashi, Ayaka; Onishi, Hideki; Ishida, Mayumi; Sato, Kazuki; Shimizu, Sachiko; Matoba, Motohiro; Miyashita, Mitsunori
This study was designed to clarify the association between pain and quality of life (QOL) of Japanese patients with cancer using a cancer-specific QOL scale (European Organization for Research and Treatment of Cancer [EORTC] QLQ-C15-PAL) in 3 care settings (outpatient, inpatient, and palliative care units [PCUs]). We examined the above-mentioned purpose for the total of 404 patients. In outpatients, physical, emotional functioning (EF), and global health status/QOL (QL item) were significantly correlated with average pain, and their correlation coefficients were -0.37 to -0.46 (P < .0001). In inpatients, they were -0.33 (P = .006), -0.26 (P = .030), and -0.31 (P = .012). In the PCU patients, they were -0.12 (P = .316), -0.30 (P = .009), and -0.28 (P = .015). Patients' pain had an association with physical and emotional QOL, and the association was smaller in the PCU patients than the others. © The Author(s) 2016.
Schuster, M; Ferner, M; Bodenstein, M; Laufenberg-Feldmann, R
Involvement of palliative care is so far not common practice for critically ill patients on surgical intensive care units (ICUs) in Germany. The objectives of palliative care concepts are improvement of patient quality of life by relief of disease-related symptoms using an interdisciplinary approach and support of patients and their relatives considering their current physical, psychological, social and spiritual needs. The need for palliative care can be identified via defined screening criteria. Integration of palliative care can either be realized using a consultative model which focusses on involvement of palliative care consultants or an integrative model which embeds palliative care principles into the routine daily practice by the ICU team. Early integration of palliative care in terms of advance care planning (ACP) can lead to an increase in goals of care discussions and quality of life as well as a decrease of mortality and length of stay on the ICU. Moreover, stress reactions of relatives and ICU staff can be reduced and higher satisfaction with therapy can be achieved. The core of goal of care discussions is professional and well-structured communication between patients, relatives and staff. Consideration of palliative care principles by model-based integration into ICU practice can improve complex intensive care courses of disease in a productive but dignified way without neglecting curative attempts.
Wiebe, Lauren A; Von Roenn, Jamie H
The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.
Busolo, David S; Woodgate, Roberta L
Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer
Porstner, Dagmar; Masel, Eva K; Heck, Ursula
The main task of palliative care specialists is to focus on symptom control such as pain, nausea or fatigue. Thorough anamnesis, physical examination, laboratory examination, and differential diagnosis can ensure appropriate treatment. In an increasing number of cases psychiatric conditions like depression or anxiety increase also occur so palliative care physicians need to be more prepared to handle them. The question of this case report is, how a palliative care specialist can distinguish between a malignant disease or neurological disease progression and a presentation primarily psychiatric in etiology, as is the case in factitious disorders. We are also interested in the incidence rate of such factitious disorders. Our case study demonstrates that it is rare but not impossible that a doctor will encounter factitious symptoms in the palliative setting. This suggest being aware of evidence of psychiatric origins even in discharge letters and referrals that indicate palliative care needs, to ensure that palliative care really is the best treatment option for the patient. We do believe such cases to be rare in a palliative setting, however.
Johannigman, Suzanne; Eschiti, Valerie
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.
Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Heide, Agnes; van der Wal, Gerrit; van der Maas, Paul J
In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. Cross-sectional. Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.
Barawid, Edward; Covarrubias, Natalia; Tribuzio, Bianca; Liao, Solomon
Palliative care requires an interdisciplinary team approach to provide the best care for patients with life-threatening illnesses. Like palliative medicine, rehabilitation also uses an interdisciplinary approach to treating patients with chronic illnesses. This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives.
Hirooka, Kayo; Miyashita, Mitsunori; Morita, Tatsuya; Ichikawa, Takeyuki; Yoshida, Saran; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Eguchi, Kenji
Although confidence in providing palliative care services is an essential component of providing such care, factors relating to this have not been investigated in Japan. This study aimed to explore confidence in the ability to provide palliative care and associated difficulties and to explore correlations between these variables. Design A cross-sectional mail survey of medical doctors and registered nurses in Japan was performed as part of a regional intervention trial: the Outreach Palliative Care Trial of Integrated Regional Model study. Subjects Questionnaires were sent to 7905 medical professionals, and 409 hospital doctors, 235 general practitioners, 2160 hospital nurses and 115 home visiting nurses completed them. Confidence in providing palliative care was low and difficulties frequent for all types of medical professionals assessed. In particular, only 8-24% of them, depending on category, agreed to 'having adequate knowledge and skills regarding cancer pain management'. In particular, 55-80% of medical professionals acknowledged difficulty with 'alleviation of cancer pain'. Multiple regression analysis revealed that confidence was positively correlated with the amount of relevant experience and, for medical doctors, with 'prescriptions of opioids (per year)'. Moreover, difficulties were negatively correlated with the amount of relevant clinical experience. Effective strategies for developing regional palliative care programs include basic education of medical professionals on management of cancer-related pain (especially regarding opioids) and other symptoms.
Baba, Mika; Maeda, Isseki; Morita, Tatsuya; Hisanaga, Takayuki; Ishihara, Tatsuhiko; Iwashita, Tomoyuki; Kaneishi, Keisuke; Kawagoe, Shohei; Kuriyama, Toshiyuki; Maeda, Takashi; Mori, Ichiro; Nakajima, Nobuhisa; Nishi, Tomohiro; Sakurai, Hiroki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Ozawa, Taketoshi; Yamamoto, Ryo; Tsuneto, Satoru
Accurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. The primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. This multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. A total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (P<0.001). The absolute agreement ranged from 56% to 60% in the PiPS-A model and 60% to 62% in the PiPS-B model. The modified PiPS was successfully validated and can be useful in palliative care units, hospital-based palliative care teams, and home-based palliative care services. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Jankowski, Jane B
This article explores the hypothesis that when a child has a life-limiting illness, the interpersonal boundaries between the patient, the patient's parents, and the health care team members differ from traditional provider, patient, and parent boundaries because of the unique dynamics of palliative care in pediatrics. Providers from the Journey's Palliative Care Team at Albany Medical Center completed a brief survey about working in pediatric palliative care and what ethical challenges they have faced in trying to maintain professional boundaries as new palliative care providers. A retrospective review of survey responses and a review of relevant literature offer insight into the various concerns reported by the Journey's team. Conclusions about delivering comprehensive ethically sound palliative care services may serve as a pathway for future studies.
Pathmawathi, Subramanian; Beng, Tan Seng; Li, Lee Mei; Rosli, Roshaslina; Sharwend, Supermanian; Kavitha, Rasaiah R; Christopher, Boey Chiong Meng
Breakthrough pain is a significant contributor to much suffering by patients. The experience of intense pain may interfere with, and affect, daily life functioning and has major consequences on patients' well-being if it is not well managed. The area of breakthrough pain has not been fully understood. This study thus aimed to explore the experiences of breakthrough pain among palliative patients. A qualitative study based on a series of open-ended interviews among 21 palliative patients suffering from pain at an urban tertiary hospital in Malaysia was conducted. Five themes were generated: (i) pain viewed as an unbearable experience causing misery in the lives of patients, (ii) deterioration of body function and no hope of recovery, (iii) receiving of inadequate pain management for pain, (iv) insensitivity of healthcare providers toward patients' pain experience, and (v) pain coping experiences of patients. The findings revealed that nonpharmacologic approaches such as psychosocial support should be introduced to the patients. Proper guidance and information should be given to healthcare providers to improve the quality of patient care. Healthcare providers should adopt a sensitive approach in caring for patients' needs. The aim is to meet the needs of the patients who want to be pain free or to attain adequate relief of their pain for breakthrough pain.
Boss, Renee D
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 goals of care and making decisions about life support. For both the extremely premature infant who dies soon after birth and the extremely premature infant who experiences multiple complications over weeks and months in the neonatal intensive care unit, palliative care can maintain a focus on infant comfort and family support. This article highlights the ways in which palliative care can be incorporated into intensive care for all critically ill infants.
Wu, Jackson S.Y.; Kerba, Marc; Wong, Rebecca K.S.; Mckimmon, Erin; Eigl, Bernhard; Hagen, Neil A.
Purpose: External beam radiotherapy (RT) is commonly indicated for the palliation of symptomatic bone metastases, but there is evidence of underutilization of this treatment modality in palliative care for cancer populations. This study was conducted to investigate factors that influenced the use of palliative RT services at a regional comprehensive cancer center. Methods and Materials: A cohort of patients with radiographically confirmed bone metastases and first-time users of palliative RT between 2003 and 2005 was retrospectively reviewed from the time of initial diagnosis of bone metastases to death or last follow-up. Type of radiation treatment service provider used (rapid access or routine access) and patient-, tumor-, and treatment-related factors were analyzed for their influences on the number of treatment courses given over the duration of disease. Results: A total of 887 patients received 1,354 courses of palliative RT for bone metastases at a median interval of 4.0 months between courses. Thirty-three percent of patients required more than one RT course. Increased age and travel distance reduced the likelihood and number of treatment courses, while service through a rapid access clinic was independently associated with an increase in subsequent use of palliative RT. Conclusions: A rapid access service model for palliative RT facilitated access to RT. Travel distance and other factors remained substantial barriers to use of palliative RT services. The pattern of practice suggests an unmet need for symptom control in patients with bone metastases.
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.
De Jong, Jennifer D; Clarke, Linda E
The components of good and bad deaths have not been well elucidated in the literature. Furthermore, the value of using narratives in palliative care research has not been extensively explored. We invited people involved in palliative care (patients, caregivers, physicians, and nurses) to tell us their stories of good and bad deaths, and 15 responded. We asked them to tell us about the good and bad deaths that they had witnessed and to describe what a good death and a bad death would be like for them, personally. Several common themes emerged from their good death narratives: a death free from pain, the sense of a life well lived, and a sense of community. Common bad death themes included a painful death and a loss of control and independence. We found that the use of story in palliative care provided an opportunity to create meaning and to heal for both the teller and the listener.
Palliative care prevents and relieves total pain of patients and their families and improves their quality of life. The author describes the work of anesthesiologists in palliative care unit as ward staffs. The need for palliative care units is increasing and new palliative care units are being established throughout Japan. Anesthesiologists are involved in anesthesia, pain management intensive care, emergency medicine and palliative care. The anesthesiologists in palliative care are involved in use of opioid and nerve block for treating physical pain. Sedatives such as minor tranquilizer to sedate a patient under regional anesthesia are used by anesthesiologists in operating rooms. Anesthesiologists manage the patients who need to be sedated for relief of refractory sufferings by sedative drugs in palliative care unit It is important that we anesthesiologists walk alongside the patients when they need to be heard in the end of life stage. We expect that it is a key point to palliate spiritual pain of the patients. I hope many young anesthesiologists serve as capable members in the palliative care unit in the future.
Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar
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
Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit
Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.
Mercadante, S; Genovese, G; Kargar, J A; Maddaloni, S; Roccella, S; Salvaggio, L; Simonetti, M T
Home care is greatly expanding because of the savings it offers by avoiding unnecessary hospitalization and also because patients benefit from being in their own home environments. Since 1988, Societa Assistenza Malato Oncologico Terminale (SAMOT) has organized a pain relief and home palliative care unit for terminal cancer patients. Objectives, difficulties, protocols, and achievements of 4 years of experience were examined, and the findings of the various years were compared. Our results suggest that considerable progress has been made in home palliative care. There are still social and cultural difficulties to overcome, however.
Yeaman, Paul A; Ford, James L; Kim, Kye Y
Providing quality palliative care is a daunting task profoundly impacted by diminished patient capacity at the end of life. Alzheimer disease (AD) is a disorder that erases our memories and is projected to increase dramatically for decades to come. By the time the patients with AD reach the end stage of the disease, the ability of patients to provide pertinent subjective complaints of pain and discomfort would have vanished. Historical perspectives of palliative care, exploration of the AD process, ethical issues, and crucial clinical considerations are provided to improve the understanding of disease progression and quality of care for patients with end-stage AD.
Feudtner, Chris; Blinman, Thane A
Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal role in assuring that these patients receive the highest possible quality of care. This article outlines a variety of definitions and conceptual frameworks, describes decision-making strategies and communication techniques, addresses issues of interdisciplinary collaboration and personal self-awareness, and illustrates these points through a series of case vignettes, all of which can help the pediatric surgeon perform the core tasks of pediatric palliative care. Copyright © 2013 Elsevier Inc. All rights reserved.
Waldman, Elisha; Wolfe, Joanne
Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome.
Sherman, Deborah Witt
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)
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options.
Reville, Barbara; Foxwell, Anessa M
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.
Ayed, Ahmad; Sayej, Sumaya; Harazneh, Lubna; Fashafsheh, Imad; Eqtait, Faeda
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…
Boss, Renee D.
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…
Boss, Renee D.
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…
Billings, J Andrew; Dahlin, Constance; Dungan, Sheryn; Greenberg, Donna; Krakauer, Eric L; Lawless, Nan; Montgomery, Paul; Reid, Coleen
We present a description of a one-year palliative care fellowship training program for physicians at the Massachusetts General Hospital. We provide background information on the Palliative Care Service, and offer an overview of the educational content and methods for fellowship training, focusing especially on psychosocial aspects of care. The medical background and post-training positions of fellows are described. This document is meant to assist other palliative care fellowship programs in developing their curricula and possibly to serve as an initial template for creating educational standards and for identifying outcome measures for educational evaluation of such programs.
Pressure sore prevention in palliative care is recognized as being an essential element of holistic care, with the primary goal of promoting quality of life for patient and family. Little is known about the incidence of pressure sore development and the use of pressure sore risk assessment tools in palliative care settings. The development of a risk assessment tool specifically for palliative care patients in a 41-bedded specialist palliative care unit is described. The risk assessment tool was developed as part of a tissue viability practice development initiative. The approach adopted in the validation of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool was the comparative analysis of professional judgment of experienced palliative care nurses with the numerical scores achieved during the assessment of risk on 291 patients (529 risk assessment events). This comparative analysis identified the threshold for different degrees of risk for the patient group involved: low risk, medium risk, high risk and very high risk. Further work is being undertaken to evaluate the inter-rater reliability of the new tool. A number of issues are explored in this paper in relation to pressure sore prevention in palliative care: the role of risk assessment tools, the sometimes conflicting aims of trying to ensure comfort and prevent pressure sore damage, and the uncertainties faced by palliative care nurses when they are trying to maintain quality of life for the dying.
Pastrana, Tania; Eisenchlas, Jorge; Centeno, Carlos; De Lima, Liliana
Several studies have been published reporting the status of palliative care in different countries of Latin America, but no studies have been published on the status of the discipline across the whole region. This article provides a summary of the current situation as reported in the Atlas of Palliative Care recently completed by the Latin American Association for Palliative Care. The aim of this project was to collect information on the degree of palliative care development, help create a network, and influence the progress of palliative care across Latin America. The Atlas provides an overview of the status of palliative care in Latin America according to the World Health Organization public health strategy for palliative care: policies, drug availability, education, and implementation of services. The results indicate that there is significant variation among countries in the region and that strategies to support and develop palliative care require tailored approaches to meet the needs of each. The information in this review gives a broad notion of the current status of palliative care in Latin America. The Atlas is expected to help the progress of palliative care and serve as a driver of the field in Latin America and other regions.
White, B P; Willmott, L; Ashby, M
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.
Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia
To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.
Marçola, Ligia; de Barbosa, Silvia Maria Macedo; Zoboli, Ivete; Polastrini, Rita Tiziana Verardo; Ceccon, Maria Esther Jurfest
ABSTRACT Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores. Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children. PMID:28977325
Ho, Charles; Straatman, Lynn
Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.
Owens, Darrell; Flom, Jan
The goal of palliative care is to provide the alleviation or reduction of suffering and the support for the best possible quality of life for patients regardless of the stage of the disease. Palliative care can be provided in any patient care setting, including intensive care units. Death in intensive care units is a common occurrence, with literature suggesting that approximately 20% of deaths in the United States occur after a stay in the intensive care unit. Other studies suggest that approximately half of all chronically ill patients who die in a hospital receive care in the intensive care unit within 3 days of their deaths. Critical care nurses who work in neurological intensive care units are at the forefront of integrating palliative and critical care.
Kemp, C; Stepp, L
This article provides a clinically-oriented overview of palliative care for patients with AIDS. Indicators of decreased survival time are divided into categories of infections/illnesses, clinical signs and symptoms, immunological and serological markers, and psychosocial factors. Primary symptoms in AIDS are discussed according to etiology and treatment. However, treatments of opportunistic infections per se are not directly addressed in this article. Problems discussed include pain, confusion, depression and anxiety, fatigue, fever, dyspnea, nausea and vomiting, diarrhea, wasting, and dehydration. The article also briefly addresses clinical and ethical questions and challenges presented by AIDS to hospice or palliative care providers, and the various stages of HIV infection.
Engelman, Suzanne R
A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated.
Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael
Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. Copyright © 2015 Elsevier Inc. All rights reserved.
This article applies the anthropological concept of liminality to reconceptualize palliative care ethics. Liminality possesses both spatial and temporal dimensions. Both these aspects are analyzed to provide insight into the intersubjective relationship between patient and caregiver in the context of palliative care. Aristotelian practical wisdom, or phronesis, is considered to be the appropriate model for palliative care ethics, provided it is able to account for liminality. Moreover, this article argues for the importance of liminality for providing an ethical structure that grounds the doctrine of double effect and overcomes the impasse of phronesis in the treatment of the terminally ill.
Rocker, Graeme M; Simpson, A Catherine; Horton, Robert
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.
HIV/AIDS has become a chronic and manageable disease owing to the remarkable advancement in medication, and it is now suggested that a palliative approach should be integrated into the trajectory of the disease to alleviate patients' psychosocial distress and optimally improve their quality of life.This article synthesises a body of literature to highlight several clinical and systematic challenges that should be addressed in implementing a palliative approach to care for HIV/AIDS patients. They involve pain and symptom management, health-care providers' perceptions of HIV/AIDS, patients' beliefs about palliative care, variability in informal care resources, socioeconomic and demographic determinants of palliative care, and difficulties in evaluating the effectiveness of palliative care. To inform current practice in the palliative care domain, responses to the identified challenges are discussed. A disease stage-specific model is also presented to respond to the prolonged course of HIV/AIDS.
Itch/pruritus can be very distressing in palliative care population and often is difficult to treat. Conventional antihistamines lack efficacy. Cutaneous and central pathogenesis of itch is extremely complex and unclear, making its treatment challenging. Neuronal mechanisms have been identified in the pathophysiology of itch hence providing a myriad of therapeutic options. It has been established that pruritus and pain neuronal pathway interact with each other, hence neuropathic analgesics like gabapentin has shown to be efficacious antipruritic therapeutic option. Gabapentin impedes transmitting nociceptive sensations to brain, thus also suppressing pruritus. Gabapentin is safe and found to be effective in uremic pruritus, cancer/hematologic causes, opiod-induced itch, brachioradial pruritis, burns pruritus, and pruritus of unknown origin. Further research is required in this area to establish whether gabapentin is consistently effective.
Ward-Smith, Peggy; Linn, Jill Burris; Korphage, Rebecca M; Christenson, Kathy; Hutto, C J; Hubble, Christopher L
The American Academy of Pediatrics has provided clinical recommendations for palliative care needs of children. This article outlines the steps involved in implementing a pediatric palliative care program in a Midwest pediatric magnet health care facility. The development of a Pediatric Advanced Comfort Care Team was supported by hospital administration and funded through grants. Challenges included the development of collaborative relationships with health care professionals from specialty areas. Pediatric Advanced Comfort Care Team services, available from the time of diagnosis, are provided by a multidisciplinary team of health care professionals and individualized on the basis of needs expressed by each child and his or her family.
Hermsen, Maaike A; ten Have, Henk A M J
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and January 2002.
Alexander, Koshy; Goldberg, Jessica; Korc-Grodzicki, Beatriz
SYNOPSIS Older cancer patients are best served by a multidisciplinary approach with Palliative Care (PC) playing an integral role. PC focuses on symptom control irrespective of its cause and should not be associated only with terminal care. It provides an additional layer of support in the care of the cancer patient with an emphasis on quality of life. In this article, we discuss the evaluation and management of pain and other common non-pain symptoms that occur in the elderly cancer patient, as well as end of life care. PMID:26614860
Buckley de Meritens, Alexandre; Margolis, Benjamin; Blinderman, Craig; Prigerson, Holly G; Maciejewski, Paul K; Shen, Megan J; Hou, June Y; Burke, William M; Wright, Jason D; Tergas, Ana I
We sought to describe practice patterns, attitudes, and barriers to the integration of palliative care services by gynecologic oncologists. Members of the Society of Gynecologic Oncology were electronically surveyed regarding their practice of incorporating palliative care services and to identify barriers for consultation. Descriptive statistics were used, and two-sample z-tests of proportions were performed to compare responses to related questions. Of the 145 respondents, 71% were attending physicians and 58% worked at an academic medical center. The vast majority (92%) had palliative care services available for consultation at their hospital; 48% thought that palliative care services were appropriately used, 51% thought they were underused, and 1% thought they were overused. Thirty percent of respondents thought that palliative care services should be incorporated at first recurrence, whereas 42% thought palliative care should be incorporated when prognosis for life expectancy is ≤ 6 months. Most participants (75%) responded that palliative care consultation is reasonable for symptom control at any stage of disease. Respondents were most likely to consult palliative care services for pain control (53%) and other symptoms (63%). Eighty-three percent of respondents thought that communicating prognosis is the primary team's responsibility, whereas the responsibilities for pain and symptom control, resuscitation status, and goals of care discussions were split between the primary team only and both teams. The main barrier for consulting palliative care services was the concern that patients and families would feel abandoned by the primary oncologist (73%). Ninety-seven percent of respondents answered that palliative care services are useful to improve patient care. The majority of gynecologic oncologists perceived palliative care as a useful collaboration that is underused. Fear of perceived abandonment by the patient and family members was identified as a
Morrison, R Sean; Meier, Diane E
The elimination of suffering and the cure of disease are the fundamental goals of medicine. While medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families. Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. Yet, multiple studies over the past decade suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems. Palliative care is interdisciplinary care focused on relief of pain and other symptoms and support for best possible quality of life for patients with serious illness, and their families. It is appropriate at the point of diagnosis of a serious illness. It goes beyond hospice care to offer patients and their families treatments focused on improving quality of life while they are receiving life-prolonging and curative treatments. Palliative care programs have been shown to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services. In the last 5 years alone the number of palliative care programs has more than doubled. This growth is in response to the increasing numbers and needs of Americans living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families. In order to ensure that all persons with serious illness and their families receive the quality of care they deserve, palliative care must become an integral part of the U.S. healthcare landscape. Specifically, persons facing serious illness and their
... cardiac disease, respiratory disease, kidney failure, Alzheimer’s, HIV/AIDS, amyotrophic lateral sclerosis (ALS), multiple sclerosis and more. Palliative care can be provided at any stage of ...
Palliative care and geriatrics share many ideas and concepts: both intend to imporve quality of life, both focus on more than the physical domain, and both work in a multiprofessional team. More and more the elderly person attracts notice by palliative care. In multimorbid geriatric patients intentions to cure and to care go alongside sometimes over years in a fragile equilibrium and with uncertain prognosis. Therefore principals of palliative care and geriatrics meet at its best in these patients: improving function plays a major role in any symptom management; how to deal with cognitively impaired patients can be learned from geriatrics; various approaches from curative, palliative and rehabilitative often go hand in hand; decision making is a permanent and sophisticated task in all patients due to prognosis and multimorbidity.
... gov/ency/patientinstructions/000531.htm Palliative care - fluid, food, and digestion To use the sharing features on ... When Your Body Has Problems Handling Fluids and Food It is normal for a person who has ...
Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ(2) = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ(2) = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.
Cojean, N; Strub, C; Kuhn, P; Calvel, L
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.
Steinberg, Steven M
For most clinicians and patients, the discussion of palliative care is a difficult topic. It is complicated by both the clinician's and patient's belief systems, which are frequently heavily influenced by cultural and religious upbringing. This article discusses the impact of some of those differences on attitudes toward end of life decisions. Several different religions and cultures have been evaluated for their impact on perceptions of palliative care and the authors will share some examples.
Shawawra, Mousa; Khleif, Amal Dweib
Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service
WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA
about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care. PMID:22617619
Wiener, Lori; McConnell, Denice Grady; Latella, Lauren; Ludi, Erica
), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
Ferrell, Betty R; Dahlin, Constance; Campbell, Margaret L; Paice, Judith A; Malloy, Pam; Virani, Rose
The integration of palliative care in critical care settings is essential to improve care of the dying, and critical care nurses are leaders in these efforts. However, lack of education in providing end-of-life (EOL) care is an obstacle to nurses and other healthcare professionals as they strive to deliver palliative care. Education regarding pain and symptom management, communication strategies, care at the end of life, ethics, and other aspects of palliative care are urgently needed. Efforts to increase EOL care education in most undergraduate and graduate nursing curricula are beginning; yet, most critical care nurses have not received formal training in palliative care. Moreover, educational resources such as critical care nursing textbooks often contain inadequate information on palliative care. The ELNEC-Critical Care program provides a comprehensive curriculum that concentrates on the requirements of those nurses who are working in areas of critical care. Extensive support materials include CD-ROM, binder, Web sites, newsletters, textbooks, and other supplemental items. The ultimate goal is to improve EOL care for patients in all critical care settings and enhance the experience of family members witnessing the dying process of their loved ones.
Madden, Kevin; Wolfe, Joanne; Collura, Christopher
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.
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.
Bétrémieux, P; Mannoni, C
The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Nelson, Judith E.; Cortez, Therese B.; Curtis, J. Randall; Lustbader, Dana R.; Mosenthal, Anne C.; Mulkerin, Colleen; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Weissman, David E.; Puntillo, Kathleen A.
Palliative care is increasingly recognized as an integral component of comprehensive intensive care for all critically ill patients, regardless of prognosis, and for their families. Here we discuss the key role that nurses can and must continue to play in making this evidence-based paradigm a clinical reality across a broad range of ICUs. We review the contributions of nurses to implementation of ICU safety initiatives as a model that can be applied to ICU palliative care integration. We focus on the importance of nursing involvement in design and application of work processes that facilitate this integration in a systematic way, including processes that ensure the participation of nurses in discussions and decision making with families about care goals. We suggest ways that nurses can help to operationalize an integrated approach to palliative care in the ICU and to define their own essential role in a successful, sustainable ICU palliative care improvement effort. Finally, we identify resources including The IPAL-ICU Project™, a new initiative by the Center to Advance Palliative Care that can assist nurses and other healthcare professionals to move such efforts forward in diverse critical care settings. PMID:21874122
Clark, Jennifer K; Fasciano, Karen
Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult.
Weissman, David E; Morrison, R Sean; Meier, Diane E
Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.
LeBlanc, Thomas W.; Lodato, Jordan E.; Currow, David C.; Abernethy, Amy P.
Purpose: Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research—especially participant recruitment—is difficult. Major barriers include (1) patient factors, (2) “gatekeeping,” and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. Patients and Methods: The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of “social marketing,” an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. Results: From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Conclusion: Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing–based protocol shows the benefits of such an approach. PMID:24130254
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; McCarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
Objective: For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. Methods: A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. Results: The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. Conclusion: The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative. PMID:28241905
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; Mccarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative.
Hui, David; Bruera, Eduardo
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.
Hui, David; Bruera, Eduardo
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
Governmental policies recommend the palliative care at home for cancer patients. However, there are some barriers to discharge cancer patients from the hospital who want to receive end-of-life care at their homes. Anesthesiologists whose main job is to perform general anesthesia in the operating theater usually have little contact with general practitioners giving community palliative care. So it is important to communicate each other to make opportunities to discuss an organized system and care plan for these patients, and to improve information transfer.
Ronaldson, Susan; Hayes, Lillian; Aggar, Christina; Green, Jennifer; Carey, Michele
To investigate spiritual caring by palliative care nurses and to describe their interventions. Spirituality and spiritual caring are recognised as integral components of holistic nursing. Qualitative data captured on a questionnaire were analysed thematically ( Braun and Clarke, 2006 ). The study involved forty-two palliative care registered nurses working across seven palliative care services in Sydney, Australia. The research question was: 'What spiritual caring interventions do palliative care nurses use in their practice?' Nurses completed an open-ended questionnaire to identify and interpret their spiritual caring. Three sub-theme categories and four major concepts of spiritual caring. Categories identified are: humanistic, pragmatic and religious interventions; while concepts of spiritual caring are: 'being with', 'listening to', 'facilitation of' and 'engaging in'. A conceptual understanding of spiritual caring was identified.
Rassouli, Maryam; Sajjadi, Moosa
Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.
Robinson, Maisha T.; Holloway, Robert G.
Abstract Purpose of review: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. Recent findings: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. Summary: We provide an overview of neuropalliative care as a fundamental skill set for all neurologists. PMID:26918202
Mantz, M; Crandall, J M
With the rising age of the population, hospital cutbacks, and increased attention to home-based care for the dying, the community can expect to experience more intense care situations and a greater potential for palliative care crises developing in the home setting. Whether the crisis is precipitated by hemorrhage, severe uncontrolled pain, or agitation, the demands placed on the family unit and careprovider can be phenomenal. Only with a greater awareness of the difficulties encountered in the home setting can the community begin to respond to the needs of the family in crisis. An open-question survey regarding palliative care crises in the community was conducted among community visiting RNs, home care case managers, and palliative outreach clinicians in southwestern Ontario, The objectives were: 1) to determine the pattern of events that precipitated a crisis; 2) to understand how crises were managed; 3) to identify barriers to effective crisis management; 4) to investigate the impact on the family unit and careprovider. Participants were also asked to list the essential resources they needed to deal effectively with a crisis situation. This paper highlights the results of the survey and suggests implications for the future direction of palliative care in the home.
Olden, Aaron M; Quill, Timothy E; Bordley, Donald; Ladwig, Susan
Internal medicine programs are now required to integrate palliative care into teaching conferences, and palliative care content is already tested on the American Board of Internal Medicine examination. Previous research has focused on integration of palliative care into existing rotations and seminars, but none has studied a required inpatient palliative care rotation. We evaluate the impact of a required palliative care rotation for internal medicine residents in four domains: pain management, non-pain symptom management, communication/ethics, and terminal care. All second-year internal medicine residents (R2s) completed a required 2-week rotation in inpatient palliative care, and were asked to complete a previously validated palliative care examination immediately before and within 2 weeks after the rotation. During the same year, all interns (R1s) were also asked to complete this examination, as were third-year residents (R3s) who had completed the rotation one year earlier, to provide a basis for comparison. Participation in the examination was voluntary for all. All interns (100%), and 71% and 87% of R2s and R3s, respectively, completed the examination. Mean examination scores improved by 12.4% between internship and start of the palliative care rotation, and by an additional 9.7% by the end of the rotation. Mean examination scores were consistent from the R2 to the R3 year. At all levels, residents scored well above the national average on the examination. Scores improved in all domains measured. Palliative care knowledge, as tested by objective examination, improves during internal medicine residency at our institution and specifically over the course of a required, 2-week palliative care rotation. Further study is warranted to determine the relative contributions to this improvement from the palliative care rotation itself, the institutional culture and/or Rochester residents' preexisting interest in the bio-psychosocial model.
Lassen, Christoph L; Aberle, Susanne; Lindenberg, Nicole; Bundscherer, Annika; Klier, Tobias W; Graf, Bernhard M; Wiese, Christoph H
While anesthesiologist's involvement in palliative care has been widely researched, extensive data on palliative patients under anesthesiological care in the operating room is missing. This study was performed to assess the incidence, demographics, and outcome of palliative patients under anesthesiological care. We conducted a single-center retrospective chart review of all palliative patients under anesthesiological care at a university hospital in 1 year. Patients were classified as palliative if they fulfilled all predefined criteria (a) incurable, life-threatening disease, (b) progression of the disease despite therapy, (c) advanced stage of the disease with limited life-expectancy, (d) receiving or being in need of a specific palliative therapy. Demographics, periprocedural parameters, symptoms at evaluation, and outcome were determined using different medical records. Of 17,580 patients examined, 276 could be classified as palliative patients (1.57%). Most contacts with palliative patients occurred in the operating room (68.5%). In comparison to the non-palliative patients, procedures in palliative patients were significantly more often urgent or emergency procedures (39.1% vs. 27.1%., P < 0.001), and hospital mortality was higher (18.8% vs. 5.0%, P < 0.001). Preprocedural symptoms varied, with pain, gastrointestinal, and nutritional problems being the most prevalent. Palliative patients are treated by anesthesiologists under varying circumstances. Anesthesiologists need to identify these patients and need to be aware of their characteristics to adequately attend to them during the periprocedural period.
May, Peter; Hynes, Geralyn; McCallion, Philip; Payne, Sheila; Larkin, Philip; McCarron, Mary
Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.
Ezer, Tamar; Marston, Joan
A fundamental and neglected part of the global response to HIV and AIDS, palliative care is also a critical entry-point for legal services. As Tamar Ezer and Joan Marston write, providing legal services to patients in palliative care can both protect human rights and improve health outcomes.
Friedrichsdorf, Stefan J; Kohen, Daniel P
At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities. This article describes the current practice of integrating hypnosis into advanced pain and symptom management of children with serious illness. Three case reports of children living with a life-limiting condition exemplify the effective use of this clinical modality to decrease distressing symptoms and suffering. Hypnosis for pediatric patients experiencing a life-limiting disease not only provides an integral part of advanced symptom management, but also supports children dealing with loss and anticipatory loss, sustains and enhances hope and helps children and adolescents live fully, making every moment count, until death.
Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne
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.
Nursing dying newborns is an inherent part of working in a neonatal intensive care (NICU). Holistic care involves recognizing the physical, emotional and spiritual needs of the dying infant and the family. The present article aims to explore how nurses can provide the best practices in neonatal palliative care. Palliative care is composed of three components: assistance with end-of-life decision making; pain and comfort management, and bereavement support with cultural competence. These issues have implications for improving nursing practice.
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.
Saylor, Jennifer; Vernoony, Stephanie; Selekman, Janice; Cowperthwait, Amy
This quasi-experimental pretest-posttest study measured self-efficacy, attitudes toward physician-nurse collaboration, and interprofessional competencies as outcomes of a palliative care simulation. Based on experience level, teams of participants, 1 consisting of nursing/medical students and the other of nursing/medical health care professionals, completed a palliative care simulation as part of their education. Self-efficacy and attitudes toward physician-nurse collaboration were measured before and after simulation. Interprofessional competency was measured during the simulation. The results revealed a significant improvement in the previously mentioned measures, and interprofessional competency scores varied by profession and evaluator.
Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith
Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.
Alexander, Koshy; Goldberg, Jessica; Korc-Grodzicki, Beatriz
Older patients with cancer are best served by a multidisciplinary approach with palliative care (PC) playing an integral role. PC focuses on symptom control irrespective of its cause and should not be associated only with terminal care. It provides an additional layer of support in the care of patients with cancer with an emphasis on quality of life. This article discusses the evaluation and management of pain and other common nonpain symptoms that occur in elderly patients with cancer, as well as end-of-life care.
Strauss, Gerald; Nelson, Barbara J.
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)
Bégnon, Julie; Vigneron, Sylvie
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.
Strauss, Gerald; Nelson, Barbara J.
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)
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.
Mosoiu, Daniela; Ryan, Karen M; Joranson, David E; Garthwaite, Jody P
Unrelieved pain from cancer and HIV/AIDS is a substantial worldwide public-health problem. Inadequate pain relief is partly due to excessively strict national drug-control policies that constrain medical use of essential medicines such as morphine. Romania's drug-control policies are more than 35 years old and impose an antiquated regulatory system that is based on inpatient post-surgical management of acute pain that restricts prescription authority and makes access to opioid treatment difficult for outpatients with severe chronic pain due to cancer or HIV/AIDS. A Ministry of Health palliative-care commission used WHO guidelines to assess and recommend changes to Romania's national drug control law and regulations. The Romanian parliament has adopted a new law that will simplify prescribing requirements and allow modern pain management. Achievement of adequate pain relief is a vital part of worldwide health and will be dependent on reform of antidrug regulations in many countries.
Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C
With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. Copyright © 2013 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.
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
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.
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.
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
Gaskins, Jessica L
Palliative care is not a term solely used for humans when discussing health care; the term is also used when discussing veterinary patients. Pets are considered part of the family by pet owners, and they have a special relationship that only another pet owner can fully understand. This article discusses some of the healthcare problems that affect pets (and their owners), statistics on the most commonly used medications for veterinary patients, quality of life, and discussions on the veterinary pharmacist-owner-palliative pet relationship and how compounding pharmacists can prepare patient-specific medications.
Penrod, Joan D; Pronovost, Peter J; Livote, Elayne E; Puntillo, Kathleen A; Walker, Amy S; Wallenstein, Sylvan; Mercado, Alice F; Swoboda, Sandra M; Ilaoa, Debra; Thompson, David A; Nelson, Judith E
High-quality care for intensive care unit patients and families includes palliative care. To promote performance improvement, the Agency for Healthcare Research and Quality's National Quality Measures Clearinghouse identified nine evidence-based processes of intensive care unit palliative care (Care and Communication Bundle) that are measured through review of medical record documentation. We conducted this study to examine how frequently the Care and Communication Bundle processes were performed in diverse intensive care units and to understand patient factors that are associated with such performance. Prospective, multisite, observational study of performance of key intensive care unit palliative care processes. A surgical intensive care unit and a medical intensive care unit in two different large academic health centers and a medical-surgical intensive care unit in a medium-sized community hospital. Consecutive adult patients with length of intensive care unit stay ≥5 days. None. Between November 2007 and December 2009, we measured performance by specified day after intensive care unit admission on nine care process measures: Identify medical decision-maker, advance directive and resuscitation preference, distribute family information leaflet, assess and manage pain, offer social work and spiritual support, and conduct interdisciplinary family meeting. Multivariable regression analysis was used to determine predictors of performance of five care processes. We enrolled 518 (94.9%) patients and 336 (83.6%) family members. Performances on pain assessment and management measures were high. In contrast, interdisciplinary family meetings were documented for <20% of patients by intensive care unit day 5. Performance on other measures ranged from 8% to 43%, with substantial variation across and within sites. Chronic comorbidity burden and site were the most consistent predictors of care process performance. Across three intensive care units in this study, performance
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
To describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. The National Institutes of Health and the National Palliative Care Research Center convened researchers from several medical subspecialties to develop a national agenda for palliative care research. The surgeon work group reviewed the existing surgical literature to identify critical knowledge gaps. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. Priorities for future research on palliative care in surgery include: 1) measuring outcomes that matter to patients, 2) communication and decision making, and 3) delivery of palliative care to surgical patients. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social and spiritual well-being and quality of life. We propose a research agenda to address major gaps in the literature and provide a road map for future investigation.
Shirado, Akemi; Morita, Tatsuya; Okusaka, Takuji; Sakamoto, Yasunari; Kizawa, Yoshiyuki; Shima, Yasuo; Shimizu, Chikako
We conducted a nation-wide survey to clarify the availability of palliative care units and outpatient palliative care services in Japan. We sent 306 questionnaires to the managing physicians of all certified palliative care units, and obtained 243 responses (79%). Eighteen percent reported that patients undergoing anti-cancer treatment are not able to apply for admission; 82% offered outpatient services. In 20% of the institutions, waiting time before admission was 11 days or longer for patients with pain and a predicted prognosis of less than 1 month. Only 10% reported that all patients who expressed a desire for admission were actually able to be admitted. Oncologists and palliative care physicians need to discuss the creation of a system so that all patients who want them can actually avail of palliative care services.
Nakazawa, Y; Miyashita, M; Morita, T; Umeda, M; Oyagi, Y; Ogasawara, T
Development of palliative care educational programmes continues in Japan. An instrument to evaluate a wider range of palliative care knowledge among general physicians and nurses is needed. However, such an instrument does not currently exist. The aim of this study was to develop an assessment to measure the efficacy of palliative care educational programmes. The questionnaire survey was validated with a group of 940 nurses at two facilities. The response rate was 85 % (n = 797). This study used psychometric methods such as item response theory and intraclass correlation coefficients. Ultimately, 20 items in 5 domains including 'philosophy', 'pain', 'dyspnoea', 'psychiatric problems' and 'gastrointestinal problems' were selected. For these items, the intraclass correlation was 0.88 overall and 0.61-0.82 in each domain; the Kuder-Richardson formula 20 in internal consistency was 0.81. Validity and reliability of the instrument were established. This tool is designed to evaluate a wider range of palliative care knowledge than currently available assessments and can be used for general physicians and nurses. The evaluation of educational programmes and the clarification of actual knowledge acquired are possible using this instrument.
... 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...
Palliative care comprises the complete treatment and care of patients suffering from incurable, life-threatening or chronically progressive disease. The aim is to provide the patients with the best possible quality of life and support them through the course of their illness until their death, to alleviate their suffering as much as possible and in consideration of the social, spiritual and religious aspects according to the patient's wishes. Palliative care is most important when the dying process and the patient's impending death do seem to be inevitable. Shared decision-making at an early stage of illness is mandatory. Respect for a person's dignity means focusing on their autonomy, their personal preferences and their right to live according to their own values and convictions. A person's autonomy is based on the level of information that he or she is given, the pertinent situation, and the patient's readiness and ability to take responsibility for their own life and end-of-life decisions. Decisions about life-prolonging measures, treatment of pain, dyspnea and palliative sedation require balancing the burden against the benefits. Decision-making must rest with the patient - as far as possible and as long as possible. The potential life-shortening effect of palliative therapy will need to be considered and discussed.
Uwimana, J; Struthers, P
The rising number of people living with HIV/AIDS (PLWHA) worldwide has made health care professionals and policy makers search for accessible health care that will meet the needs of people who are suffering from the disease and enhance their quality of life (QoL). This study investigated met and unmet palliative care needs of PLWHA in selected areas in Rwanda. The study sample included 306 participants: PLWHA, health care professionals and coordinators of HIV/AIDS units. Quantitative and qualitative methodologies were used. The data were analysed separately and then triangulated. In the findings, over 50% of PLWHA had symptoms related to HIV/AIDS most of the time, with the most common symptom being pain. Participation in activities of daily living was significantly associated with the health status of PLWHA (p<0.001). The most common perceived palliative care needs of PLWHA were medical needs, psychosocial needs and the need for financial assistance (77%); home-based care (47%); nutritional support (44%); and pain relief and management of other symptoms (43%). Most PLWHA indicated these palliative care needs were unmet, in particular the need for pain relief, symptom management, financial assistance and nutritional support. Over 50% of health care professionals reported they were not trained in palliative care. They indicated that inadequate policy and resources were the main obstacles to the provision of optimal palliative care. Addressing unmet palliative care needs would enhance the QoL of PLWHA. In addition, developing policy related to the provision of palliative care and building the capacity of health care providers is essential for the provision of adequate palliative care services in Rwanda.
Soto, Eliezer; Stewart, Douglas R.; Mannes, Andrew J.; Ruppert, Sarah L.; Baker, Karen; Zlott, Daniel; Handel, Daniel; Berger, Ann M.
Ketamine, an N-methyl-D-aspartate (NMDA) receptor antagonist, has been shown to be effective not only for its anesthetic properties but also for the analgesic and opiate-sparing effects. However, data on efficacy and safety of oral ketamine for the treatment of neuropathic or cancer pain syndromes is limited with most of the evidence based on small clinical trials and anecdotal experiences. In this review, we will analyze the clinical data on oral ketamine in the palliative care setting. After an extensive search using five major databases, a total of 19 relevant articles were included. No official clinical guidelines for the use of oral ketamine in this patient population were found. Studies on oral ketamine for cancer and neuropathic pain have shown mixed results which could be partially due to significant differences in hepatic metabolism. In addition, we will include a case report of a 38-year-old female with neurofibromatosis type 1 (NF1) with history of chronic, severe pain in her fingertips secondary to multiple glomus tumors which evolved into CRPS resistant to multiple therapies but responsive to oral ketamine. Based on our experience with oral ketamine, this drug should be administered after an intravenous trial to monitor response and side effects in patients with an adequate functional status. However, patients in the palliative care and hospice setting, especially the one at the end of their lives, may also benefit from oral ketamine even if an intravenous trial is not feasible. PMID:21803784
Hozumi, Jun; Sumitani, Masahiko
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.
Henner, Natalia; Boss, Renee D
Neonatologists receive highly varied and largely inadequate training to acquire and maintain communication and palliative care skills. Neonatology fellows often need to give distressing news to families and frequently face unique communication challenges. While several approaches to teaching these skills exist, practice opportunities through simulation and role play will likely provide the most effective learning.
Cossío-Díaz, José Ramón; Franco González-Salas, José Fernando; Kershenobich-Stalnikowitz, David; Goslinga-Remírez, Lorena; Montes de Oca-Arboleya, Rodrigo; Torres-Morán, Laura Estela; Calderón-Vidal, Mariana
This article analyzes the Mexican regulation on palliative care and its relationship with the public debate on assisted death or suicide. This paper focuses on the rights that people with incurable diseases have, given the current contents of the General Health Statute and other applicable rules. Its main purpose is to activate the public debate on these matters.
... 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 • ...
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Government policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation's recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate about what form comprehensive palliative care services should take, particularly in relation to the balance between acute and community based services. It is therefore timely to review how national policy positions the current and future role of the acute hospital in palliative care provision. The aim of this exploratory review is to identify the role envisaged for the acute hospital in palliative and end of life care provision in five countries with an 'advanced' level of integration. Countries were identified using the Global Atlas of Palliative Care. Policies were accessed through internet searching of government websites between October and December 2014. Using a process of thematic analysis key themes related to palliative care in hospital were identified. Policies from Switzerland, England, Singapore, Australia and Ireland were analysed for recurring themes. Three themes were identified: preferences for place of care and place of death outside the hospital setting, unnecessary or avoidable hospital admissions, and quality of care in hospital. No policy focused upon exploring how palliative care could be improved in the hospital setting or indeed what role the hospital may have in the provision of palliative care. Palliative care policy in five countries with 'advanced' levels of palliative care integration focuses on solving the 'problems' associated with hospital as a place of palliative care and death. No positive role for hospitals in palliative care provision is envisaged. Given the rapidly increasing population of people requiring palliative care, and emerging evidence that patients themselves report benefits of hospital
Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401
Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R
Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
According to the guidelines published by the WHO in 2010, palliative care has been defined as “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 and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” Intervention provided as a part of the palliative care has to be by health professionals who strictly work as a part of the multidisciplinary team and have been specifically trained to an optimal level of competency in the field. Two key problem areas in palliative care which a physiotherapist deals with are poor physical function and pain. This article deals with the following issues: (1) What is palliative care education and its importance? (2) Current scenario of palliative care in medical and allied fields internationally. (3) Current scenario of palliative care education in medical and allied fields in India. (4) Proposed curriculum guidelines for palliative care in physiotherapy. PMID:27981164
Ladwig, Susan; Robb, Jessica; Kelly, Adam; Nielsen, Eric; Quill, Timothy E.
Abstract Objective To determine the pattern and characteristics of palliative care (PC) consultations in patients with stroke and compare them with the characteristics of nonstroke consultations. Methods The palliative care program at Strong Memorial Hospital (SMH) was established in October 2001. SMH is a 765-bed academic medical center with approximately 38,000 discharges. For each consult from 2005 to 2007, we collected demographic, clinical, and service-related information. We explored similarities and differences in patients with different types of stroke, including patients with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and subdural hematoma. In addition, we compared these data to the nonstroke patients who had a palliative care consultation during the same time period. Results Over the 3-year period from 2005 to 2007, there were a total of 101 consultations in patients with stroke (6.3% of all PC consultations). Of the 101 consultations, 31 were in patients with ischemic stroke, 26 in patients with intracerebral hemorrhage, 30 in patients with subarachnoid hemorrhage, and 14 in patients with subdural hematoma. Patients with stroke who had a PC consult were more functionally impaired, less likely to have capacity, more likely to die in the hospital, and to have fewer traditional symptom burdens than other common diagnoses seen on the PC consultation service. The most common trajectory to death was withdrawal of mechanical ventilation, but varied by type of stroke. Common treatments negotiated in these consultations included mechanical ventilation, artificial nutrition, tracheostomy, and less likely antibiobics, intravenous fluids, and various neurosurgical procedures. Conclusions Patients with stroke are a common diagnosis seen on an inpatient palliative care consult service. Each stroke type represents patients with potentially distinct palliative care needs. PMID:20384501
Rajagopal, M R
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.
Edwards, Asher; Nam, Samuel
As the baby boomer generation ages, the need for palliative care services will be paramount and yet training for palliative care physicians is currently inadequate to meet the current palliative care needs. Nonspecialty-trained physicians will need to supplement the gap between supply and demand. Yet, no uniform guidelines exist for the training of internal medicine residents in palliative care. To our knowledge, no systematic study has been performed to evaluate how internal medicine residencies currently integrate palliative care into their training. In this study, we surveyed 338 Accreditation Council for Graduate Medical Education-accredited internal medicine program directors. We queried how palliative care was integrated into their training programs. The vast majority of respondents felt that palliative care training was "very important" (87.5%) and 75.9% of respondents offered some kind of palliative care rotation, often with a multidisciplinary approach. Moving forward, we are hopeful that the data provided from our survey will act as a launching point for more formal investigations into palliative care education for internal medicine residents. Concurrently, policy makers should aid in palliative care instruction by formalizing required palliative care training for internal medicine residents.
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.
Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R
While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.
Haun, Markus W; Estel, Stephanie; Rücker, Gerta; Friederich, Hans-Christoph; Villalobos, Matthias; Thomas, Michael; Hartmann, Mechthild
potential adverse events of early palliative care, such as a higher percentage of participants with severe scores for pain and poor appetite; the remaining six studies did not report adverse events in study publications. For these six studies, principal investigators stated upon request that they had not observed any adverse events. This systematic review of a small number of trials indicates that early palliative care interventions may have more beneficial effects on quality of life and symptom intensity among patients with advanced cancer than among those given usual/standard cancer care alone. Although we found only small effect sizes, these may be clinically relevant at an advanced disease stage with limited prognosis, at which time further decline in quality of life is very common. At this point, effects on mortality and depression are uncertain. We have to interpret current results with caution owing to very low to low certainty of current evidence and between-study differences regarding participant populations, interventions, and methods. Additional research now under way will present a clearer picture of the effect and specific indication of early palliative care. Upcoming results from several ongoing studies (N = 20) and studies awaiting assessment (N = 10) may increase the certainty of study results and may lead to improved decision making. In perspective, early palliative care is a newly emerging field, and well-conducted studies are needed to explicitly describe the components of early palliative care and control treatments, after blinding of participants and outcome assessors, and to report on possible adverse events.
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
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.
Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean
Context: The Palliative Care Outcome Scale (POS) is an easy-to-use assessment tool to evaluate the effectiveness of palliative care. There is no published literature on the use of POS as an assessment tool in Malaysia. Aim: To define the concordance in the assessment of quality of life between patients with advanced cancers and their palliative care nurses using a Malay version of the POS. Settings and Design: This study was conducted in the palliative care unit of the Hospital Tuanku Ja'afar Seremban, Malaysia, from February 2014 to June 2014. Subjects and Methods: We adapted and validated the English version of the 3-day recall POS into Malay and used it to define the concordance in the assessment of quality of life between patients and palliative care nurses. Forty patients with advanced stage cancers and forty palliative care nurses completed the Malay POS questionnaire. Statistical Analysis Used: The kappa statistical test was used to assess the agreement between patients and their palliative care nurses. Results: Slight to fair concordance was found in all items, except for one item (family anxiety) where there was no agreement. Conclusions: The Malay version of the POS was well accepted and reliable as an assessment tool for evaluation of the effectiveness of palliative care in Malaysia. Slight to fair concordance was shown between the patients and their palliative care nurses, suggesting the needs for more training of the nurses. PMID:28216862
McCarthy, Mark; Brajovic, Mina
Introduction Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management. PMID:19513178
McCulloch, Renée; Comac, Maggie; Craig, Finella
Palliative care in children has been emerging as a clinical subspecialty of paediatrics for many years. It requires the knowledge and experience of a paediatrician, combined with the skills of a palliative care specialist. Both are essential, as a paediatrician may not have advanced knowledge of palliative care and a palliative care specialist is unlikely to be familiar with the complexity of working with families where the child is the patient. This paper reviews recent literature and discusses advances in the development of palliative care services for children and young people with incurable cancer. It highlights key areas where paediatric palliative care differs from that of adults and outlines the barriers to providing palliation and conducting evidence-based research in children and young people dying from cancer.
As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.
Brown, J. B.; Sangster, M.; Swift, J.
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
Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R
Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.
Francoeur, Richard B; Payne, Richard; Raveis, Victoria H; Shim, Hyunjung
Many barriers, including being uninsured or having less than comprehensive health insurance coverage, reduce access to palliative and end-of-life care by inner city minorities. Medicaid or Medicare coverage alone can limit options for pain and symptom management, especially when late referrals make it more difficult to achieve symptom control. Patient affiliation with a religion could offset perceived difficulties with pain medication as well as negative pain and symptom attitudes. Data were analyzed from the most recent assessments of 146 African Americans and Latinos enrolled in an outpatient palliative care unit of an inner city hospital. Fifty-seven percent were receiving palliative care for cancer. Compared with other patients, patients with a religious affiliation did not differ regarding pain medication stress. Uninsured patients with a religious affiliation reported more hopeful pain and symptom attitudes, while patients with a religious affiliation covered only by Medicaid reported less hopeful pain and symptom attitudes. More hopeful pain and symptom attitudes by religious-affiliated, uninsured patients may reveal adequate coping, yet also conceal problem domains. Conversely, less hopeful attitudes by religious-affiliated patients covered only by Medicaid serve as clues to coping difficulties and problem domains. Palliative care programs should carefully consider how to integrate religious support networks as pipelines for program referrals and potential partners for care. Cancer 2007. (c) 2006 American Cancer Society.
Murphy, Edel; Froggatt, Katherine; Connolly, Sheelah; O'Shea, Eamon; Sampson, Elizabeth L; Casey, Dympna; Devane, Declan
Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia. To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used. We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 4 February 2016. ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCOhost), LILACS (BIREME), Web of Science Core Collection (ISI Web of Science), ClinicalTrials.gov and the World Health Organization ICTRP trial portal to ensure that the searches were as comprehensive and as up-to-date as possible. We searched for randomised (RCT) and non-randomised controlled trials (nRCT), controlled before-and-after studies (CBA) and interrupted time series studies evaluating the impact of palliative care interventions for adults with dementia of any type, staged as advanced dementia by a recognised and validated tool. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies on the basis of outcomes measured and recorded all outcomes measured in
Confronted with the complexities inherent in delivering palliative care, effective collaboration with referring staff becomes vital. Based on the evaluation of the physical and psychosocial concerns of patients, the goal of palliative care is to craft interventions that maintain quality of life in the face of increasing symptoms and deteriorating functional status. The project's goal was to increase the appropriateness of referrals to palliative care by the primary services in the hospital. The aim was to achieve this by developing a process to assess patient functioning in critical psychosocial and functional areas, and providing this data to referring medical staff to educate them on the contribution of palliative care to symptom control and patient quality of life. The findings show that referrals to palliative care have increased over 100% from a broader range of services since initiating this project. Assessment data has been collected on 165 patients and outcomes are discussed.
Chumash Healers used breathing therapy and counseling to keep patients involved in daily life and to avoid depression. Heat therapy, massage and pain medications were used to help with pain. Another primary function of the Healer was to help the patient sleep as normally as possible, possibly using mugwort or momoy. Nutrition was considered by Healers in treating their patients. The overall concern of the Healer was to help maintain the daily routine of village life during the normal process of the death of a village member. PMID:15937554
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
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
Shaw, Clare; Eldridge, Lucy
Many palliative care patients experience nutritional problems as their conditions progress. This includes those with progressive neurological conditions, chronic obstructive pulmonary disease (COPD) as well as advanced cancer. Nutritional issues not only impact patients physically but also psychologically and can also have an effect on those caring for them. It is important that patients are screened appropriately and that one identifies what symptoms are potentially affecting their intake. Decisions should always be patient-centred. Nutritional interventions range from food modification and nutritional supplements, to more intense methods such as enteral or parenteral nutrition, and these may have ethical and legal considerations. This article explores the nutritional issues faced by palliative patients, the ethical issues supporting decision-making and the methods of nutritional support available.
Schiffman, Joshua D; Chamberlain, Lisa J; Palmer, Laura; Contro, Nancy; Sourkes, Barbara; Sectish, Theodore C
The Pediatric Palliative Care Curriculum (PPCC) was introduced as a pilot study in response to the published need for increased pediatric education in end-of-life (EOL) care. The PPCC was designed to better train residents in EOL issues so they could become more comfortable and knowledgeable in caring for children and adolescents with life-threatening illnesses. The PPCC consisted of six hour-long sessions run by a clinical psychologist, a licensed social worker, and faculty with experience in EOL care. The curriculum repeated every 6 weeks for 1 year. Residents in the training program at Stanford University rotating through oncology, pulmonology, and pediatric intensive care unit (PICU) were invited to attend. Session topics included: (1) personal coping skills, (2) being a caring professional, (3) recognizing cultural and familial differences, (4) pain management, (5) practical issues, and (6) meeting a bereaved parent. Pretest and posttest surveys with five-point Likert scale questions were used to measure curricular impact. Statistically significant improvement was found in resident self-report of: feeling prepared to initiate do-not-resuscitate discussions (p = 0.001), access to nonpharmacologic pain resources (p = 0.005), exposure to role models who balance medical professionalism and expression of grief (p = 0.005), ability to address dying patient anxiety (p = 0.01), administer pain medications (p = 0.01), initiate organ donation discussions (p = 0.05), and discuss transition from curative to palliative care (p = 0.05). Survey ratings for the following topics were unchanged: "expression of grief is unprofessional" and "residency stress prohibits the processing of and coping with grief." Pediatric residents who participated in this pilot study felt they learned important skills in pediatric EOL care and enhanced their confidence in their ability to care for dying patients and their families. Interventions like the PPCC may be useful at other
Pelant, Diane; McCaffrey, Terri; Beckel, Jean
Palliative care, long-used in the adult setting, is new to the pediatric setting. Research indicates that palliative care reduces length of stay and use of aggressive end-of-life interventions, improves quality of life, and provides hope. It balances provision of coordinated care with building of family memories and preparation for the child's death with celebration of the child's life. We advocate implementation of pediatric palliative care in any hospital that cares for children. This article provides a model outlining critical steps and considerations for establishing a successful pediatric palliative care program.
Benyó, Gábor; Lukács, Miklós; Busa, Csilla; Mangel, László; Csikós, Ágnes
Modern palliative-hospice care has gained space in Europe for more than 50 years. Since the initial empirical work of Cicely Saunders, palliative medicine has gained its place in evidence-based medicine in more and more countries. However, development, as in many other medical fields, is not uniform, there are big differences between countries in the world. There are also significant differences in development of care and the level of services within the European Union amongst Western and Eastern European countries. These differences affect the professional approach, legislative mechanisms and social acceptance. Hungarian palliative-hospice care has developed significantly over the past 15 years. For further development thoughtful strategic steps and service development is needed. The integration of palliative care into standard oncology is an international requirement, which also appears in the form of professional guidelines. Hungary has also played a role in the development of the European model of integrated palliative care of which Hungarian implementation, the "Pécs model", is discussed in detail in our paper.
Schmiedebach, H-P; Woellert, K
Many of the judicial and ethical questions raised by euthanasia are still the subject of controversial discussions. In this context the article broaches the issues of the doctor- patient relationship, patient's right to autonomy, and advance directive. It deals with the present judicial possibilities of euthanasia in Germany with reference to the situation in the Netherlands. Finally, there is an outlook on the role of palliative care and of hospices.
Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith
Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication
Barilan, Y Michael
In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick's observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at the price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients' life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever ("total pain" or critical suffering). Only in the fourth circle are people hedonists.
Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.
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
Bolognesi, Deborah; Brighi, Nicole; Muciarelli, Pier-Angelo; Biasco, Guido
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
Whittall, Dawn; Lee, Susan; O'Connor, Margaret
To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment
Steindal, Simen Alexander; Bredal, Inger Schou; Ranhoff, Anette Hylen; Sørbye, Liv Wergeland; Lerdal, Anners
Pain is a common symptom in older patients at the end of life. Little research has evaluated pain management among the oldest hospitalised dying patients. To compare the pain characteristics documented by healthcare workers for the young old and the oldest old hospitalised patients and the types of analgesics administered in the last three days of life. A retrospective cross-sectional comparative study. The study included 190 patients from a Norwegian general hospital: 101 young old patients (aged 65-84 years) and 89 oldest old patients (aged 85-100 years). Data were extracted from electronic patient records (EPRs) using the Resident Assessment Instrument for Palliative Care. No significant differences were found between the young old and the oldest old patients with regard to pain characteristics. Pain intensity was poorly recorded in the EPRs. Most of the patients received adequate pain control. Morphine was the most frequently administered analgesic for dying patients. Compared to the oldest old patients, a greater proportion of the young old patients received paracetamol combined with codeine (OR = 3.25, 95% CI 1.02-10.40). There appeared to be no differences in healthcare workers' documentation of pain characteristics in young old and oldest old patients, but young old patients were more likely to receive paracetamol in combination with codeine. A limitation of the study is the retrospective design and that data were collected from a single hospital. Therefore, caution should be taken for interpretation of the results. The use of systematic patient-reported assessments in combination with feasible validated tools could contribute to more comprehensive documentation of pain intensity and improved pain control. © 2014 John Wiley & Sons Ltd.
... Families Take the Quiz Step 3: Meet the Palliative Care Team The palliative care team will spend a lot of time ... are some suggestions: What can I expect from palliative care? Where will my care be provided (e. ...
Broadley, K E; Kurowska, A; Dick, R; Platts, A; Tookman, A
Transcatheter arterial embolization (TCAE) is a well recognized radiological technique that has been used for over 25 years. It is a method of diminishing blood flow through selected vessels by inserting haemostatic material under angiographic control. The procedure is performed under local anaesthetic through a femoral or, occasionally, an axillary approach. We present our experience of the use of TCAE in the management of pain and haemorrhage in three hospice inpatients in whom other options had been exhausted. The use of TCAE as a technique for the palliation of these symptoms in the hospice setting is discussed.
van Gurp, Jelle; van Selm, Martine; van Leeuwen, Evert; Vissers, Kris; Hasselaar, Jeroen
Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24-85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were
Wentlandt, Kirsten; Weiss, Andrea; O'Connor, Erin; Kaya, Ebru
Palliative care is an interprofessional approach that focuses on quality of life of patients facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower health care utilization. Most transplant patients suffer from advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population is lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure, and transplant populations. A proposed model to provide palliative care in parallel with disease directed therapy in a transplant program has potential to improve symptom burden, quality of life, and health care utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
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.
Fitzpatrick, Danielle; Heah, Rebecca; Patten, Simon; Ward, Helena
There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative care teaching within medical schools have identified significant variability and lack of consistency in teaching. This review aims to update the literature on the current status of palliative care teaching to undergraduates within medical schools. A systematic review was undertaken on articles published from December 2001 to November 2015 on palliative care teaching for undergraduate medical students. In all, 650 abstract citations were obtained, of which 126 were relevant to the research questions. Thematic analysis was performed on remaining articles according to whether they discussed content and/or methodology of palliative care education, and data collated. There is greater consistency in the content being delivered as part of end-of-life care education within medical schools. The most frequently taught topics include attitudes to death and dying, communication skills, and pain management. Pediatric care and religious/cultural issues are less frequently addressed. Teaching institutions are also utilising a broader range of teaching modalities. There is significant progress in palliative care education within medical schools. Ongoing challenges relate to correlating our current practice in medical education to professional recommendations and the expressed needs of junior doctors to practice competent end-of-life care.
Webster, Ruth; Lacey, Judith; Quine, Susan
Palliative care is an emerging specialist discipline worldwide with the majority of services located in developed countries. Developing countries, however, have higher incidences of cancer and AIDS and most of these patients would benefit from palliative care. While there is prominent coverage of this issue in the palliative care literature, there is limited coverage in the specialist public health literature, which suggests that the challenges of palliative care may not yet have been generally recognized as a public health priority, particularly in developing countries. The aim of this article is to introduce the topic of "Palliative care in developing countries" into the specialist public health literature to raise awareness and stimulate debate on this issue among public health professionals and health policy makers, thereby potentially facilitating establishment of palliative care services in developing countries.
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities. PMID:23439559
Dallara, Alexis; Meret, Anca; Saroyan, John
Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding palliative care within general neurology and child neurology. A literature review was conducted examining use of palliative care within child neurology. More than 100 articles and textbooks were retrieved and reviewed. Expert guidelines stress the importance of expertise in palliative care among neurologists. Subspecialties written about in child neurology include that of peripheral nervous system disorders, neurodegenerative diseases, and metabolic disorders. Adult and child neurology patients have a great need for improved palliative care services, as they frequently develop cumulative physical and cognitive disabilities over time and cope with decreasing quality of life before reaching the terminal stage of their illness.
Jünger, Saskia; Payne, Sheila; Brearley, Sarah; Ploenes, Verena; Radbruch, Lukas
Throughout Europe, there are major differences in the stages of development and in the types of service delivery of palliative care. Consensus on standards and norms for palliative care in Europe is needed for advocacy and health policy decision making. To provide an empirical basis for a common understanding of palliative care delivery in Europe. A two-round, online consensus Delphi study was undertaken with a multiprofessional expert panel of board members of national hospice and palliative care associations in Europe. Respondents represented 80% of the member associations of the European Association for Palliative Care, comprising 96 experts and 35 national hospice and palliative care associations from 22 countries. High to very high consensus was found for common values and principles of palliative care (e.g., autonomy, dignity) and the provision of different levels of palliative care. Lower consensus emerged for concepts such as end-of-life care or terminal care, the demand of services and the composition of palliative care teams. The role of social workers was emphasized, but there was ambiguity about the contribution of psychologists. The need for health professionals without specialist palliative care skills to strengthen their contribution to palliative care provision was emphasized. Overall, this study contributed to a higher level of consensus toward the proposed recommendations. Expert comments underlined the need for clearer definitions and specifications of terms and indicated important topics where cultural issues, geographical aspects, and the local health care setting have to be considered in palliative care. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Mierendorf, Susanne M; Gidvani, Vinita
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
Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris
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
Bourke, Stephen J; Booth, Zoe; Doe, Simon; Anderson, Alan; Rice, Sarah; Gascoigne, Alistair; Quibell, Rachel
Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be members of the team, and thought that patients had found it helpful. The palliative specialists gained knowledge of cystic fibrosis, found it beneficial to meet patients earlier in the disease, and identified unmet needs in managing bereavement and the effects of deaths on other patients with cystic fibrosis. This model has been successful in overcoming the difficulties in access to specialist palliative care for patients with cystic fibrosis. © The Author(s) 2016.
Gkialas, I; Iordanidou, L; Galanakis, I; Giannopoulos, S
Bone pain associated with advanced prostate and other cancers is a frequent and significant complication. Pharmaceutical therapy of bone pain includes nonsteroidal analgesics and opiates. While external beam radiation therapy remains the mainstay of pain palliation of solitary lesions, bone-seeking radiopharmaceuticals have entered the armamentarium for the treatment of multiple osseous metastases. The 3 radioisotopes currently approved for treatment of pain (strontium-89/(89)Sr, samarium-153/(153)Sm and rhenium-186/(186)Re) are discussed in this review including the approved dose, method of administration and indications for use.
de Paula Paz, Cássia Regina; Reis Pessalacia, Juliana Dias; Campos Pavone Zoboli, Elma Lourdes; Ludugério de Souza, Hieda; Ferreira Granja, Gabriela; Cabral Schveitzer, Mariana
Assess the need for incorporation of palliative care in primary health care (PHC) through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil) in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS) to identify the indication of palliative care. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141) had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%), followed by disorders related to quality of care during pregnancy and childbirth (24.38%). It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
Levine, Deena; Lam, Catherine G; Cunningham, Melody J; Remke, Stacy; Chrastek, Jody; Klick, Jeffrey; Macauley, Robert; Baker, Justin N
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.
Schmidt, Pia; Otto, Michael; Hechler, Tanja; Metzing, Sabine; Wolfe, Joanne; Zernikow, Boris
Awareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer. In 2005 we interviewed a cohort of 48 bereaved parents who had a lost a child to cancer approximately five years earlier (2000 cohort), and in 2010 we interviewed another cohort of 48 parents who had lost a child due to cancer approximately five years before (2005 cohort). Children of the 2000 cohort were cared for by six specialized oncology departments in North-Rhine-Westphalia (NRW), Germany, and children of the 2005 cohort by 16 specialized pediatric oncology departments in NRW, Germany. Parents of both cohorts were interviewed using the Survey of Caring for Children with Cancer (SCCC). The children of both parental cohorts were similar in terms of disease characteristics and sociodemographic variables. Children suffered in a very similar manner from core symptoms such as pain and dyspnea. However, symptom treatment increased for all symptoms. In case of treatment of anxiety the increase was statistically significant (p=0.035). Location of care changed with almost three-quarters of the 2005 cohort receiving palliative home care, significantly more than in the 2000 cohort (p=0.007). Additionally, fewer children of the 2005 cohort died in the intensive care unit. While the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life.
On World Hospice and Palliative Care Day-8 October 2011-the Worldwide Palliative Care Alliance (WPCA) launched a global update highlighting the progress that has been made in hospice and palliative care over the past 5 years (Lynch et al, 2011; WPCA 2011). Encouragingly, the study shows that there has been a marked increase in the number of countries providing one or more hospice and palliative care services-from 49% of countries in 2006 to 58% in 2011. Here we explore some of the key factors behind this progress, focusing particularly on advocacy and policy.
Berry, Mary Judith; Saito-Benz, Maria; Klein, Tisha; Bowkett, Brendon; Richardson, Vaughan F
Complete ectopia cordis in the newborn represents a significant management challenge. There are minimal data available to inform optimal clinical care for those infants with coexisting complex congenital heart disease who are therefore not candidates for surgical intervention. The exteriorisation of the heart and absence of the pericardial sac requires meticulous wound care to prevent desiccation of the myocardium and to minimise infection risk. Additionally, the technique selected must address the risk of occlusion of the cardiac vascular pedicle and abrasion between the mobile myocardium and dressing surface. We report a novel approach to wound management and integrated palliative care that enabled community-based care. Our patient, a full-term male infant with complete ectopia cordis was born in good condition by assisted vaginal delivery. He was discharged from hospital on day 8 and was cared for in the community until his demise from cardiac failure on day 15.
Zulman, Donna M.
Abstract With global aging and scientific advances extending survival, the number of adults experiencing multiple chronic conditions has grown substantially and is projected to increase by another third between 2000 and 2030. Among the many challenges posed by multimorbidity, some of the most pressing include how to characterize and measure comorbid conditions, understand symptoms and illness burden, and provide person-centered care in the context of competing health care priorities and increasing complexity. In this white paper emanating from a National Institute on Aging supported conference to discuss research gaps at the geriatrics–palliative care interface, the authors review common definitions of multimorbidity; describe the association between multimorbidity and quality of life, functional status, quality of care, and health care utilization; note content and methodological gaps in multimorbidity evidence; and make recommendations regarding research priorities in this area of expanding public health impact. PMID:23777331
Cooper, Rhonda S
The role of the professional chaplain on the palliative care team in the health care setting formalizes the concern for the emotional, spiritual and social well-being of the care recipients and their caregivers. The chaplain also has a peculiar role on the team, in that her most fundamental task is her intentional listening-and-hearing of the other person's story. One palliative chaplain introduces herself as a Story Catcher to care recipients, in an effort both to overcome the resistance some may have to her presence on the team and communicate her essential role and intent in providing spiritual care. This self-appointed sobriquet resonates with the author's embrace of the theory and practice of the late theologian, educator and civil rights activist Nelle Morton, who coined the phrase "hearing into speech" to describe the process by which another person, through being truly heard and entering into a relationship with the hearer, claims her/his own truth, hope and identity in the face of adversity. The chaplain as Story Catcher functions as the agent of healing and hope for those who choose to tell their stories and are heard, as they resist their illness and death rather than submit to its indignity. Copyright © 2017. Published by Elsevier Inc.
Dzingina, Mendwas D; McCrone, Paul; Higginson, Irene J
The main measure to generate utility data for economic evaluations is the EQ-5D, but no study has tested whether or how to map from palliative care measures to the EQ-5D. To assess the level of conceptual overlap between palliative outcomes and the EQ-5D, and the feasibility of mapping between them to obtain utilities for the Palliative care Outcome Scale. A cross-sectional secondary analysis of data from three studies. Patients receiving palliative care and bereaved relatives, recruited from three tertiary National Health Service hospitals in South London. The overlap between both measures was assessed using principal component analysis. The Palliative care Outcome Scale was mapped onto the EQ-5D using three regression models. Spearman's correlations between both instruments were low (mean rho = 0.11). The principal component analysis showed the Palliative care Outcome Scale is associated with only two EQ-5D dimensions (pain; and anxiety/depression). No Palliative care Outcome Scale items loaded onto the mobility, self-care and usual activities dimensions of the EQ-5D. The mapping models performed poorly at predicting utilities from Palliative care Outcome Scale data (mean absolute error >0.3 and R(2) <0.10). Hence, none of the models can be recommended as acceptable for calculating utilities from Palliative care Outcome Scale responses. Differences between the Palliative care Outcome Scale and the EQ-5D do not undermine the qualities of either instrument when used for their own purposes. However, due to conceptual differences, the EQ-5D does not capture some of the concerns measured by the Palliative care Outcome Scale, and therefore, mapping onto the EQ-5D is unlikely to provide an appropriate basis for estimating utilities for conducting economic evaluations in palliative care studies.
Michelson, Kelly Nicole; Steinhorn, David M.
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
Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert
To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.
Bekelman, David B; Rabin, Borsika A; Nowels, Carolyn T; Sahay, Anju; Heidenreich, Paul A; Fischer, Stacy M; Main, Deborah S
The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.
Martin, Ang Seng Hock; Costello, John; Griffiths, Jane
Majority of the progress and development in palliative care in the last decade has been improvements in physical aspects of treatment, namely pain and symptom management. Psychosocial aspects of care have improved, although not enough to meet the needs of many patients and family members. This is evident in many parts of the world and notably in Singapore, where palliative care is seen as an emerging medical and nursing specialty. To discuss the implementation of the SAGE and THYME communication model in a palliative care context. The article examines the use of the model and how its implementation can improve communication between patients and nurses. The model works by reviewing contemporary developments made in relation to improving communication in palliative care. These include, highlighting the importance of meeting individual needs, therapeutic relationship building, and advanced communication training within a Singaporean context. The implementation of the SAGE and THYME model can be a useful way of enabling nurses to improve and maintain effective communication in a medically dominated health care system. The challenges and constraints in educating and training nurses with limited skills in palliative care, forms part of the review, including the cultural and attitude constraints specific to Singaporean palliative care.
Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels. The internet is fundamentally changing how health information is being distributed and accessed. Clinicians, patients, community members, and decision makers have an unprecedented capacity to find online information about palliative care and end-of-life care. However, it is clear that not all individuals have the skills to be able to find and assess the quality of the resources they need. There are also many issues in creating online resources that are current, relevant and authoritative for use by health professionals and by health consumers. This paper explores the processes and structures used in creating a major national palliative care knowledge resource, the CareSearch website, to meet the needs of health professionals and of patients and their families and carers. PMID:27983592
Connell, Tanya; Fernandez, Ritin S; Griffiths, Rhonda; Tran, Duong; Agar, Meera; Harlum, Janeane; Langdon, Rachel
A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n = 7) were randomly selected from a sample of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services; service provision; impact on way of life; usefulness of services; and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services.
Robert, Rhonda; Zhukovsky, Donna S; Mauricio, Riza; Gilmore, Katherine; Morrison, Shirley; Palos, Guadalupe R
This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.
Santos Salas, Anna; Cameron, Brenda L
Understanding how a nurse acts in a particular situation reveals how nurses enact their ethics in day-to-day nursing. Our ethical frameworks assist us when we experience serious ethical dilemmas. Yet how a nurse responds in situations of daily practice is contingent upon all the presenting cues that build the current moment. In this article, we look at how a home care nurse responds to the ethical opening that arises when the nurse enters a person's home. We discuss how the home presents the nurse with knowledge that informs the provision of ethical nursing care. The analysis is based on findings from an interpretive research study in palliative home care in Canada. Through interpretive analysis of a nursing situation we delineate how the nurse engages with the whole and acts inside the moment. The analysis shows how home care nurses are ethically determined to engage with whatever is going on in a patient's home.
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.
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
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. 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. 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. 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 attitudinal factors and "culture" in the unit and institution. Approaches that emphasize delivery of
The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many
Dean, Mervyn; Hartwig, Kari; Mmbando, Paul Z.; Sayed, Abduraoof; de Vries, Elma
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
O'Connor, Moira; Pugh, Judith; Jiwa, Moyez; Hughes, Jeff; Fisher, Colleen
Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.
Smith, C B; Nelson, J E; Berman, A R; Powell, C A; Fleischman, J; Salazar-Schicchi, J; Wisnivesky, J P
Integration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care. We provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (<25%). Of 155 physicians who returned survey responses, 75 (48%) reported referring <25% of patients for palliative care consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians' concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21-0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56-6.02) was associated with higher rates of referral. Although palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management.
0802 TITLE: Racial Disparities in Palliative Care for Prostate Cancer PRINCIPAL INVESTIGATOR: Alfred I. Neugut, MD, PhD...Disparities in Palliative Care for Prostate Cancer 5b. GRANT NUMBER W81XWH-10-1-0802 5c. PROGRAM ELEMENT NUMBER 6. AUTHOR(S...increasingly available. There has been very little research on the use of palliative treatments. Our team has developed the tools/methods for
Penrod, Joan D.; Pronovost, Peter J.; Livote, Elayne E.; Puntillo, Kathleen A.; Walker, Amy S.; Wallenstein, Sylvan; Mercado, Alice F.; Swoboda, Sandra M.; Ilaoa, Debra; Thompson, David A.; Nelson, Judith E.
Objectives High-quality care for intensive care unit patients and families includes palliative care. To promote performance improvement, the Agency for Healthcare Research and Quality’s National Quality Measures Clearinghouse identified nine evidence-based processes of intensive care unit palliative care (Care and Communication Bundle) that are measured through review of medical record documentation. We conducted this study to examine how frequently the Care and Communication Bundle processes were performed in diverse intensive care units and to understand patient factors that are associated with such performance. Design Prospective, multisite, observational study of performance of key intensive care unit palliative care processes. Settings A surgical intensive care unit and a medical intensive care unit in two different large academic health centers and a medical-surgical intensive care unit in a medium-sized community hospital. Patients Consecutive adult patients with length of intensive care unit stay ≥5 days. Interventions None. Measurements and Main Results Between November 2007 and December 2009, we measured performance by specified day after intensive care unit admission on nine care process measures: identify medical decision-maker, advance directive and resuscitation preference, distribute family information leaflet, assess and manage pain, offer social work and spiritual support, and conduct interdisciplinary family meeting. Multivariable regression analysis was used to determine predictors of performance of five care processes. We enrolled 518 (94.9%) patients and 336 (83.6%) family members. Performances on pain assessment and management measures were high. In contrast, interdisciplinary family meetings were documented for <20% of patients by intensive care unit day 5. Performance on other measures ranged from 8% to 43%, with substantial variation across and within sites. Chronic comorbidity burden and site were the most consistent predictors of care
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
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…
Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L
Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.
Children with life-threatening illnesses are subjected to numerous treatments and procedures. They endure enormous physical and emotional pain as attempts are made to prolong their lives. These children require sensitive care by pediatric nurses who recognize the importance of the child's need to grow and become. A way to satisfy the child's desire is the fulfillment of a special wish, which provides a sense of future, a way to be something more. The fulfillment of the wish is a palliative care and end-of-life intervention that can ease suffering and sorrow for the child and family. It is essential to understand, however, that the child has complex emotions as the wish is fulfilled. The provision of care must, therefore, include psychological support, empowerment, and communication with the child and family to assist with life-threatening illnesses as they experience suffering within the tension of living and dying.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet, these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social, and spiritual well-being and quality of life. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. The objective of this article was to describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. We propose a research agenda to address these gaps and provide a road map for future investigation.
Knapp, Caprice A; Madden, Vanessa; Wang, Hua; Kassing, Kristin; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth A
Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.
Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.
Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. PMID:19729681
Thöns, M; Flender, H J; Mertzlufft, F; Zenz, M
For the provision of home care for dying patients the availability of potent pain medication is essential. The aim of this survey directed at community palliative care physicians was to assess and evaluate the current situation of provision and supply of pain medication in the community palliative care setting, including hospices and specialised palliative care teams. A total of 489 palliative care doctors were identified from registers held by the Practitioners Associations. These professionals received a letter requesting information about the provision of narcotics in ambulatory and community practice. The answers were evaluated and analysed with descriptive statistics. Of the 489 palliative care specialists, 208 (43%) responded. Almost all of the doctors (99%) considered the availability of a constant supply of narcotics as vital for their practice; 86.3% considered the service provided by public pharmacies as inadequate. Some incidents of flagrant mismanagement were reported. Only 11% of the doctors considered the transfer of narcotics from one patient to the other in hospices and retirement homes via a new narcotics prescription as practicable; 89% of the doctors judged this procedure to lack practicability. Despite the fact that the need for unrestricted opioid provision in specialised community palliative care is indisputable and recognised, the implementation is nevertheless hindered by a multitude of legal red tape. One solution to the problem would be the legalisation of emergency supplies of narcotics to be held by specialised facilities, such as hospices or specialised palliative care teams. This could, for instance, be implemented via the narcotics requisition form currently used for inpatient supplies in hospitals or for emergency services. Hospices and care homes must be enabled to receive their supplies directly without bureaucratic hindrance and without the need for renewed narcotic prescription.
Daher, Michel; Estephan, Elie; Abu-Saad Huijer, Huda; Naja, Zoher
The goal of palliative care (PC) is to relieve suffering. PC is an urgent humanitarian need worldwide for people with cancer and other chronic fatal diseases. PC in Lebanon has made some important strides in the last decade but it is still in its infancy. More attention needs to be given in the near future to the implementation of the recommendations already listed by previous meetings and workshops. In order to do so, it is necessary to change the legislative system in Lebanon in order to recognize and to integrate this new discipline. Education and training of health professionals in PC should be provided by medical and nursing schools throughout the country. Postgraduate education in medicine and nursing and ensuing certification should be made available. Ideally, PC services should be provided from the time of diagnosis of life-threatening illness, adapting to the increasing needs of cancer patients and their families as the disease progresses into the terminal phase. They should also provide support to families in their bereavement. It is as important and essential to involve policy makers in the development of pain relief and PC services and clinics which meet the needs of the population in Lebanon. Effective PC services should be integrated into the existing health system at all levels of care, especially community and home-based care. They involve the public and the private sector and are adapted to the specific cultural, social and economic setting. In order to respond to the cancer priority needs in a community and make the best use of scarce resources, PC services should be strategically linked to cancer prevention, early detection and treatment services. The time will come for Lebanon to form the National Council for Pain Relief and Palliative Care as an advocacy and coordination body for pain relief and PC in the near future. To that effect, we believe the future is near.
The purpose of this qualitative study, using a modified grounded theory approach, was to investigate how palliative care nurses care for people from cultural backgrounds other than their own. Ten palliative care nurses were interviewed. The semi-structured interviews were tape-recorded and transcribed verbatim. Analysis commenced as soon as data began to emerge. The findings show that palliative nursing across cultural boundaries is paradoxical. In endeavouring to treat everyone equally, nurses treated everyone as individuals. They made intense efforts to transcend both cultural and language barriers. The nurses gave of themselves when caring for the patients, but their endeavours were impeded by limited resources and a lack of education. The theory of cross-cultural endeavour in palliative nursing was developed to explain how palliative care nurses care for patients from cultures other than their own.
Lamb, E-S; Liebl, P; Köster, M-J; Hübner, J
Patients are looking for information regarding palliative care in different sources. Goal of this study is the analysis of the most important online forum for cancer patients, Cancer Compass, concerning palliative care. On the chosen date, 3.02.2012, all threads on the various topics (cancer types, cancer treatment, specific user groups, general topics, advice and addresses, countries and regions, Über den Krebs-Kompass & Vermischtes) were systematically analyzed. All entries relating to palliative care were recorded and subsequently analyzed and summarized. From 231 threads relating to palliative care, 163 were relevant.The general practitioner is the main source of information, but the internet is gaining importance. The forum users often offer good explanations of cancer and palliative care and also refer to web pages with exact definitions. Reliability of web pages is a one issue discussed in the forum.Patients are afraid of pain and dying. Relatives fear for the patient, are overwhelmed and experience existential problems. Both groups use the Cancer Compass to share experiences and get psychological support. Thus Cancer Compass offers a possibility to discuss options for improving quality of life.Especially in the initial phase of care, many users are uncertain what palliative care means. The treatment of pain represents the main concern of patients and their families. Whereas dedicated palliative care wards are rated positively, users speak less positively about pain treatment in general wards in home care.In general, inpatient palliative care was rated positively. However information regarding outpatient care is lacking. Family care is mostly not possible on account of geographical distance. One point of criticism is the discrepancy between urban and rural areas. Patients place more trust in their general practitioner than in hospital doctors. Cancer Compass is an important medium for patients and their families to share information, i. a. on palliative
Sandman, Lars; Molander, Ulla; Benkel, Inger
Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Lane, Heather; Philip, Jennifer
To explore the views and experiences of staff from RACFs and community palliative care services (CPCSs) on providing palliative and end-of-life care in RACFs. Qualitative exploratory interviews and focus groups were conducted with staff working in two RACFs and two CPCSs, and, following data saturation, a thematic analysis undertaken. 15 RACF and 15 CPCS staff participated. The overarching theme was of managing expectations in the provision of care. This included low expectations of the care available in RACFs, tensions in addressing complex decision-making and concurrent administrative expectations, and differences between views of RACF and CPCS staff regarding their respective roles. Improved understanding of the needs of RACF staff will improve the care of residents and, in turn, reduce hospitalisations. © 2013 ACOTA.
Bruera, Eduardo; Hui, David
In the last 25 years, palliative care has made major progress as an interdisciplinary specialty that addresses quality-of-life issues for patients with life-limiting illnesses and their families. Research by numerous investigators has contributed to our increasing body of knowledge to support an evidence-based practice. We highlight some lessons learned by our group in the process of conducting palliative care research, focusing in particular on symptom assessment; the management of pain, fatigue, cachexia, dyspnea, delirium, and opioid-induced neurotoxicity; and outcomes of our palliative care program. Narrative review of selected literature, focusing on studies conducted by our group. This article is based on the Second Vittorio Ventafridda Memorial Lecture by Dr Eduardo Bruera, delivered at the European Association for Palliative Care, Trondheim, Norway on 8 June 2012. For each topic, we review some of the pivotal studies in palliative care, discuss the challenges in research design, and outline possible directions for future research. We conclude by sharing some of what we learned about the processes, pearls, and pitfalls of palliative care research.
Lloyd-Williams, Mari; Field, David
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…
Daly, Donnelle; Matzel, Stephen Chavez
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.
Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumors in a dose-dependent manner and contributes to long-term survival. Hochuekkito has clinical effects on cachexia for genitourinary cancer and improves the QOL and immunological status of weak patients, such as postoperative patients. Daikenchuto increases intestinal motility and decreases the postoperative symptoms of patients with total gastrectomy with jejunal pouch interposition, suppresses postoperative inflammation following surgery for colorectal cancer, and controls radiation-induced enteritis. Rikkunshito contributes to the amelioration of anorectic conditions in cancer cachexia-anorexia syndrome. Goshajinkigan and Shakuyakukanzoto reduce the neurotoxicity of patients with colorectal cancer who undergo oxaliplatin and FOLFOX (5-fluorouracil/folinic acid plus oxaliplatin) therapy. Hangeshashinto has the effect of preventing and alleviating diarrhea induced by CPT-11(irinotecan) and combination therapy with S-1/CPT-11. O’rengedokuto significantly improves mucositis caused by anticancer agents. PMID:24447861
Hubble, Rosemary A; Ward-Smith, Peggy; Christenson, Kathy; Hutto, C J; Korphage, Rebecca M; Hubble, Christopher L
Recommendations for best practice from the American Academy of Pediatrics include the availability of palliative care for children with life-threatening or life-limiting health care conditions. The uniqueness of the both the pediatric population and a pediatric health care setting requires changing the culture that previously has provided only curative or hospice care to these individuals. Methods to provide palliative care alongside of treatment and coordination of these efforts must be multidisciplinary and include family members.
Kumar, Senthil P
Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. Settings and Design: This was a systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs. Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care. PMID:22347775
Kumar, Senthil P
Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. This was a systematic review of palliative care journals. Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs. Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
Bergman, Jonathan; Laviana, Aaron A
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
Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh
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. 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. 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.
Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh
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
Stienstra, Deborah; Chochinov, Harvey Max
Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.
Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo
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.
Dawson, Camilla; Paterson, Fiona; McFatter, Fiona; Buchanan, Deans
Methadone is a synthetic opioid which is being used with increased frequency in the palliative care setting for management of complex pain. There have been cases published reporting the development of oedema with methadone maintenance therapy but no cases on the association with methadone and peripheral oedema in the palliative care setting. As yet, the underlying mechanisms are unclear. This case report describes a gentleman with ependymoma and difficult-to-control lower back pain and scrotal pain. This pain had failed to respond to other strong opioids. He was prescribed methadone and then subsequently developed bilateral peripheral oedema. Peripheral oedema resolved following cessation of methadone. This highlights an important potential adverse effect of methadone in a society of increased methadone prescription for pain control. The published literature to date is reviewed and possible underlying mechanisms explored.
Kaasa, Stein; Loge, Jon Håvard; Fayers, Peter; Caraceni, Augusto; Strasser, Florian; Hjermstad, Marianne Jensen; Higginson, Irene; Radbruch, Lukas; Haugen, Dagny Faksvåg
This article describes the research strategy for the development of a computerized assessment tool as part of a European Union (EU)-funded project, the European Palliative Care Research Collaborative (EPCRC). The EPCRC is funded through the Sixth Framework Program of the EU with major objectives to develop a computer-based assessment and classification tool for pain, depression, and cachexia. A systematic approach will be applied for the tool development with emphasis on multicultural and multilanguage challenges across Europe. The EPCRC is based on a long lasting collaboration within the European Association for Palliative Care Research Network. The ongoing change in society towards greatly increased use of communication as well as information transfer via digital systems will rapidly change the health care system. Therefore, patient-centered outcome assessment tools applicable for both clinic and research should be developed. Report of symptoms via digital media provides a start for face-to-face communication, treatment decisions, and assessment of treatment effects. The increased use of electronic media for exchange of information may facilitate the development and use of electronic assessment tools and decision-making systems in oncology. In the future, patients may find that a combination of a face-to-face interview plus a transfer of information of subjective symptoms by electronic means will optimize treatment.
Duggleby, Wendy; Raudonis, Barbara M
To explore the myths about palliative care and older adults with cancer. Research literature and review articles. Several myths about older adults exist: older adults are the same as younger adults, older adults are all the same, and optimizing function and quality of life are not important outcomes. Little research has focused on older adults receiving palliative care and their families. The Oncology Nursing Society and Geriatric Oncology Consortium published the Joint Position Statement on Cancer Care in Older Adults acknowledging the unique needs of older adults with cancer. Application of this statement may be helpful in guiding inquiry and practice in the care for older adults receiving palliative care.
Palliative care is expanding out of the hospice, and out of the narrow confines of its association with cancer. It should be a part of all care. District nurses are ideally placed to implement and coordinate palliative care in the community, making use of the talents of many other agencies and professionals. However, because of a lack of communication between these agencies, there is confusion about their roles, and many patients may not be receiving optimal care. This article argues that by promoting interagency and interprofessional communication and cooperation, district nurses can strengthen their role at the heart of palliative care provision in the community.
Kaye, Erica C; Rubenstein, Jared; Levine, Deena; Baker, Justin N; Dabbs, Devon; Friebert, Sarah E
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.
Ingleton, Christine; Gardiner, Clare; Seymour, Jane E; Richards, Naomi; Gott, Merryn
Education and training are seen as 'absolutely essential parts of providing palliative care'. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the 'cure' orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.
Abstract Palliative care programs are rapidly evolving in acute care facilities. Increased and earlier access has been advocated for patients with life-threatening illnesses. Existing programs would need major growth to accommodate the increased utilization. The objective of this review is to provide an update on the current structures, processes, and outcomes of the Supportive and Palliative Care Program at the University of Texas M.D. Anderson Cancer Center (UTMDACC), and to use the update as a platform to discuss the challenges and opportunities in integrating palliative and supportive services in a tertiary care cancer center. Our interprofessional program consists of a mobile consultation team, an acute palliative care unit, and an outpatient supportive care clinic. We will discuss various metrics including symptom outcomes, quality of end-of-life care, program growth, and financial issues. Despite the growing evidence to support early palliative care involvement, referral to palliative care remains heterogeneous and delayed. To address this issue, we will discuss various conceptual models and practical recommendations to optimize palliative care access. PMID:22925157
Gurfolino, V; Dumas, L
In this article, some differences are presented between hospice and home care nurses. Issues related to pain control, symptom management, and dehydration are highlighted. Emphasis is placed on the spiritual dimensions of hospice care and the holism implicit in its concept.
Bradford, Natalie K; Armfield, Nigel R; Young, Jeanine; Herbert, Anthony; Mott, Christine; Smith, Anthony C
We compared the records of paediatric palliative consultations undertaken face-to-face, with telemedicine consultations undertaken in patients' homes. A convenience sample of consecutive paediatric palliative care patients was identified from the hospital's palliative care database. A total of 100 consultations was reviewed (50 telemedicine consultations during home visits and 50 face-to-face consultations) according to 14 established principles and components of a paediatric palliative care consultation. In the telemedicine group there was a higher proportion of patients in a stable condition (58% vs 7%), and a lower proportion of patients in terminal phase (2% vs 17%). Discussion about pain and anorexia were significantly more common in the telemedicine group. Discussion about follow up was significantly more common in the telemedicine group (86% vs 56%), whilst resuscitation planning was more common in deteriorating patients receiving inpatient care. All other components and principles of a palliative care consultation were documented equally regardless of method of consultation. The findings confirm that palliative consultations via telemedicine are just as effective as face-to-face consultations in terms of the documented components of the consultation.
da Costa, Thailly Faria; Ceolim, Maria Filomena
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.
McClement, Susan E; Care, Dean; Dean, Ruth; Cheang, Mary
Our study was an evaluation of a pilot course in palliative nursing care designed to improve practising nurses' knowledge regarding cancer pain management and attitudes toward care of the dying patient. The course involved 12 weeks (36 hours) of systematic classroom instruction for registered nurses, and a one-day observational experience on a designated palliative care unit. A total of 16 nurses participated in the study. A repeated measures design was used to evaluate the effectiveness of the course. Attitudes toward care of the dying patient and his/her family were also evaluated. Results showed that nurses' attitudes improved significantly from Time 1 (first day of course) to Time 2 (last day of course) (p=0.0007), and that this improvement was maintained at Time 3 (three months later) (p=0.064). The observational experience on a palliative care unit held in conjunction with the course was reported to be helpful to students in consolidating theoretical instruction.
Locklin, Julia K.; Mannes, Andrew; Berger, Ann; Wood, Bradford J.
The purpose of this study was to analyze the feasibility, safety, and efficacy of radiofrequency ablation (RFA) to treat pain from soft tissue neoplasms. RFA was performed on 15 painful soft tissue tumors in 14 patients. Tumors varied in histology and location and ranged in size from 2 to 20 cm. Patient pain was assessed using the Brief Pain Inventory (BPI) at baseline and 1 day, 1 week, 1 month, and 3 months post RFA. All patients had unresectable tumors or were poor operative candidates whose pain was poorly controlled by conventional treatment methods. BPI scores were divided into two categories: pain severity and interference of pain. Although not all scores were statistically significant, all mean scores trended down with increased time post ablation. Based on these outcomes, RFA appears to be a low-risk and well-tolerated procedure for pain palliation in patients with unresectable, painful soft tissue neoplasms. RFA is effective for short-term local pain control and may provide another option for failed chemotherapy or radiation therapy in patients with cancer. However, pain may transiently worsen, and relief is often temporary. PMID:15524075
Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji
This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population.
von Plessen, Christian; Nielsen, Thyge L; Steffensen, Ida E; Larsen, Shuruk Al-Halwai; Taudorf, Ebbe
Terminal chronic obstructive pulmonary disease (COPD) and advanced cancer have similar prognosis and symptom burden. However, palliative care of patients with terminal COPD has been neglected in Denmark. We describe the symptoms of terminal COPD and suggest criteria for defining the palliative phase of the disease. Furthermore we discuss the prognostic and ethical challenges for patients, their families and their caregivers. Finally, we summarize the current evidence for palliative treatment of dyspnoea and ways to evaluate response to treatment.
Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan
In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.
Farber, Eugene W; Marconi, Vincent C
Advances in treatment are contributing to substantial increases in life expectancy for individuals living with HIV, prompting a need to develop care models for the effective management of HIV as a chronic illness. With many individuals continuing to experience symptoms and complications that add to the disease burden across the spectrum of HIV disease, the discussion herein explores the complementary role that early palliative care can play in HIV primary care as a strategy for enhancing long-term quality of life. After first defining the concept of early palliative care, its scope in the context of current clinical realities in HIV treatment and implications for HIV care models is described. After reviewing the emerging extant research literature on HIV palliative care outcomes, a program description is offered as an illustration of how palliative care integration with HIV primary care can be achieved.
Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann
Currently, major deficiencies exist in undergraduate nursing education for end-of-life care. Nursing students report feeling anxious and unprepared to be with patients who are dying. A Palliative Care Companion program that allows undergraduate nursing students to volunteer to spend time with patients at the end of life provides a unique educational opportunity to enhance students' knowledge and attitudes toward palliative care. In addition, the program offers a service to patients and families by providing a nonmedical, caring human presence to patients who may be alone, lonely, or bored. In accordance with tenets of Experiential Learning Theory, a Palliative Care Companion program was developed and revised using feedback from initial participants and facilitators. Data collected during the first two semesters indicated increased knowledge of palliative care, improved attitudes about care at the end of life, and fewer concerns about providing nursing care to dying patients, when participating students were compared to their undergraduate peers.
Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D
High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented.
Toevs, Christine C
The purpose of palliative medicine is to prevent and relieve suffering and to help patients and their families set informed goals of care and treatment. Palliative medicine can be provided along with life-prolonging treatment or as the main focus of treatment. Increasingly, palliative medicine has a role in the surgical intensive care unit (SICU) and trauma. Data show involving palliative medicine in the SICU results in decreased length of stay, improved communication with families and patients, and earlier setting of goals of care, without increasing mortality. The use of triggers for palliative medicine consultation improves patient-centered care in the SICU. Copyright Â© 2012 Elsevier Inc. All rights reserved.
Sargeant, S; Chamley, C
This is the second part of a two-part article on oral health assessment and mouth care for children and young people receiving palliative care. This article covers basic oral hygiene and management of oral health problems: oral candidiasis, coated tongue/dirty mouth, dry mouth, hypersalivation, ulceration, painful mouth, stomatitis and mucositis. The article also covers treating patients who are immunocompromised and the need to educate families and carers in the basic principles of oral care, including the importance of preventing cross-infection. Part one outlined oral assessment and discussed the adaptation of the Nottingham Oral Health Assessment Tool (Freer 2000).
Humphrey, Lisa; Kang, Tammy I
Children with advanced cancer, including those with hematologic malignancies, can benefit from interdisciplinary palliative care services. Palliative care includes management of distressing symptoms, attention to psychosocial and spiritual needs, and assistance with navigating complex medical decisions with the ultimate goal of maximizing the quality-of-life of the child and family. Palliative care is distinct from hospice care and can assist with the care of patients throughout the cancer continuum, irrespective of prognosis. While key healthcare organizations, including the Institute of Medicine, the American Academy of Pediatrics and the American Society of Clinical Oncology among many others endorse palliative care for children with advanced illness, barriers to integration of palliative care into cancer care still exist. Providing assistance with advance care planning, guiding patients and families through prognostic uncertainty, and managing transitions of care are also included in goals of palliative care involvement. For patients with advanced malignancy, legislation, included in the Patient Protection and Affordable Health Care Act allows patients and families more options as they make the difficult transition from disease directed therapy to care focused on comfort and quality-of-life.
Ghandourh, Wsam A
Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.
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.
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
Street, A; Blackford, J
This paper discusses the findings of a critical study that examined the communication patterns between nurses and general practitioners (GPs) providing palliative care in Australia. Interviews and focus groups involved 40 palliative care nurses who worked in the three settings of care: community, hospice and hospital. Issues that impeded effective communication strategies between palliative care nurses and GPs were networking, case management, multiple service providers, lack of standardized documentation and formal tracking of clients, along with difficulties in transmission of relevant practice knowledge. Supporting strategies for effective formal modes of communicating and reporting are described.
Sinclair, Shane; Pereira, Jose; Raffin, Shelley
Research related to spirituality and health has developed from relative obscurity to a thriving field of study over the last 20 years both within palliative care and within health care in general. This paper provides a descriptive review of the literature related to spirituality and health, with a special focus on spirituality within palliative and end-of-life care. CINAHL and MEDLINE were searched under the keywords "spirituality" and "palliative." The review revealed five overarching themes in the general spirituality and health literature: (1) conceptual difficulties related to the term spirituality and proposed solutions; (2) the relationship between spirituality and religion; (3) the effects of spirituality on health; (4) the subjects enrolled in spirituality-related research; and (5) the provision of spiritual care. While the spirituality literature within palliative care shared these overarching characteristics of the broader spirituality and health literature, six specific thematic areas transpired: (1) general discussions of spirituality in palliative care; (2) the spiritual needs of palliative care patients; (3) the nature of hope in palliative care; (4) tools and therapies related to spirituality; (5) effects of religion in palliative care; and (6) spirituality and palliative care professionals. The literature as it relates to these themes is summarized in this review. Spirituality is emerging largely as a concept void of religion, an instrument to be utilized in improving or maintaining health and quality of life, and focussed predominantly on the "self" largely in the form of the patient. While representing an important beginning, the authors suggest that a more integral approach needs to be developed that elicits the experiential nature of spirituality that is shared by patients, family members, and health care professionals alike.
McConnell, Tracey; Porter, Sam
Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.
Zwerdling, Theodore; Hamann, Kevin; Meyers, Frederick
Historically, the concept of palliative care has been limited to hospice and end-of-life services. Recently, palliative care has been expanded to emphasize its integration throughout an illness. We suggest that palliative care provides an opportunity to prevent illness. Palliative care providers can effectively reduce the risk of illness in families by employing methods and strategies of preventive medicine. We illustrate three such cases. Patients and survivors may benefit from appropriate recognition and referral to prevent potential medical, social, and psychological problems. For preventive medicine to become fully exploited by palliative care providers, curricula will need to be developed. Risk assessment indicators of heritable and acquired conditions will define core functions of this educational process. Relevant topics should encompass basic preventive medicine methods, methods to disseminate assigned risk to the palliative care team, and referral mechanisms to specialists with expertise in the identified area(s) of concern. Opportunities to integrate preventive care into end-of-life services will create a new dimension for comprehensive palliative care.
Wu, Hung-Lan; Volker, Deborah L
This article presents a discussion of the relevance of Humanistic Nursing Theory to hospice and palliative care nursing. The World Health Organization has characterized the need for expert, palliative and end-of-life care as a top priority for global health care. The specialty of hospice and palliative care nursing embraces a humanistic caring and holistic approach to patient care. As this resonates with Paterson and Zderad's Humanistic Nursing Theory, an understanding of hospice nurses' experiences can be investigated by application of relevant constructs in the theory. This article is based on Paterson and Zderad's publications and other theoretical and research articles and books focused on Humanistic Nursing Theory (1976-2009), and data from a phenomenological study of the lived experience of Taiwanese hospice nurses conducted in 2007. Theoretical concepts relevant to hospice and palliative nursing included moreness-choice, call-and-response, intersubjective transaction, uniqueness-otherness, being and doing and community. The philosophical perspectives of Humanistic Nursing Theory are relevant to the practice of hospice and palliative care nursing. By 'being with and doing with', hospice and palliative nurses can work with patients to achieve their final goals in the last phase of life. Use of core concepts from Humanistic Nursing Theory can provide a unifying language for planning care and describing interventions. Future research efforts in hospice and palliative nursing should define and evaluate these concepts for efficacy in practice settings. © 2011 Blackwell Publishing Ltd.
Isaacson, Mary; Karel, Beth; Varilek, Brandon M; Steenstra, Whitney J; Tanis-Heyenga, Jordan P; Wagner, Amanda
Palliative care options are limited for Native Americans (NA) in South Dakota (SD). This exploratory study offers the perspectives of Native and non-Native health care professionals regarding palliative care specific to NAs. Semi-structured interviews were conducted (N = 7) with participants representing NA (4) and non-Native (3) ethnicities. Non-Native participants were practicing health care professionals in palliative medicine, whereas the NA health care professionals had experience with palliative care. Concept analysis revealed two main themes and five subthemes: (a) barriers to palliative care, for example, insufficient funding, lack of infrastructure, and misconceptions; and (b) implementation strategies, for example, openness and listening and creating the right team. Genuine interest and concern exists for the provision of palliative care to NA communities using collaborative and innovative approaches. To address the health disparities of the NA population specific to palliative care, public health policy reform and education for health professionals are necessary. © The Author(s) 2014.
End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our “dharma” is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability. PMID:27891024
Hatton, Ian; McDonald, Keith; Nancarrow, Lynette; Fletcher, Keith
In September 2000 the Commonwealth released, as part of its National Palliative Care Strategy under the Australian Health Care Agreements, a National Framework for Palliative Care Service Development. The new National Framework stressed an important set of values to guide models of palliative care delivery. It notes that the challenge is to secure the place of palliative care as an integral part of health care across Australia, routinely available within local communities to those people who need it. Care and support for people who are dying and their families need to be built not only into health care services, but also into the fabric of communities and their support networks. While few would disagree with this, little is known about how best to achieve it in rural Australia. The Griffith Area Palliative Care Service (GAPS) is a two-year pilot project delivering a palliative care service through a truly integrated approach to care for patients, their carers and families within the Griffith Local Government Area and Carrathool Shire areas. This paper describes how GAPS is successfully meeting the challenges of service provision to rural and remote areas.
Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer
The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.
Doré-Pautonnier, Delphine; Baussant-Crenn, Camille; Frattini, Marie-Odile; Mino, Jean-Christophe; Rennesson, Marina
The French National Palliative Care Resource Centre (CNDR) provides people impacted by the end of life, death and bereavement with a range of constantly evolving services. Spreading the palliative approach in order to enable everyone to benefit from it and appropriate it constitutes the main mission of the CNDR.
Civetta, J M
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.
Krakauer, Eric L; Ngoc, Nguyen Thi Minh; Green, Kimberly; Van Kham, Le; Khue, Luong Ngoc
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.
Lamba, Sangeeta; Schmidt, Terri A; Chan, Garrett K; Todd, Knox H; Grudzen, Corita R; Weissman, David E; Quest, Tammie E
Emergency medical service (EMS) is frequently called to care for a seriously ill patient with a life-threatening or life-limiting illness. The seriously ill include both the acutely injured patients (for example in mass casualty events) and those who suffer from advanced stages of a chronic disease (for example severe malignant pain). EMS therefore plays an important role in delivering realistic, appropriate, and timely care that is consistent with the patient's wishes and in treating distressing symptoms in those who are seriously ill. The purpose of this article is to; 1) review four case scenarios that relate to palliative care and may be commonly encountered in the out-of-hospital setting and 2) provide a road map by suggesting four things to do to start an EMS-palliative care initiative in order to optimize out-of-hospital care of the seriously ill and increase preparedness of EMS providers in these difficult situations.
Unlike in other nations, in Canada palliative care has its origins in university hospitals. It has subsequently developed in a few Canadian schools as an academic discipline closely linked with oncology programs. Although this model is successful, other faculties of medicine and cancer centres have been slow to emulate it. Today, the situation is rapidly changing, and both palliative care and oncology professionals are re-examining the manifest need for collaborative efforts in patient care, research and education. Palliative care must be regarded as an essential component of cancer care, its principles must be applied throughout the course of the illness and, as in other phases of cancer control, palliative care should be regarded as an exercise in prevention--prevention of suffering. This article discusses practical applications that flow from acceptance of these concepts. PMID:9676548
Floriani, Ciro Augusto; Schramm, Fermin Roland
Palliative care, a model in end-of-life care, is currently undergoing expansion in Brazil. This article emphasizes the need to implement palliative care in primary health care, with an important role in end-of-life care, especially in areas without specialized palliative-care teams. The article discusses key aspects in the organization of this treatment modality and analyzes how palliative care could and should be implemented within primary health care in Brazil. The article describes several challenges for health teams to provide such care, related to the primary caregiver, inherent ethical conflicts, and human resource allocation.
Chin, Loh Ee; Loong, Lam Chee; Ngen, Chin Cheuk; Beng, Tan Seng; Shireen, Chin; Kuan, Wong Sook; Shaw, Rosalie
Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting. © The Author(s) 2013.
Legalisation of physician-assisted dying (PAD) remains a highly contested issue. In the Australasian context, the opinion and perspective of palliative care specialists have not been captured empirically, and are required to inform better the debate around this issue, moving forward. To identify current attitudes and experiences of palliative care specialists in Australasia regarding requests for physician-assisted suicide and voluntary euthanasia, and to capture the opinion of palliative care specialists on the legalisation of these practices in the Australasian context. An anonymous, cross-sectional, online survey of Australasian specialists in palliative care, addressing the following six areas: (i) demographics; (ii) frequency of requests, and response given; (iii) understanding of the term 'voluntary euthanasia'; (iv) opinion regarding legalisation of physician-assisted suicide and voluntary euthanasia in Australasia, and willingness to participate if legal; (v) identification of the most important values guiding this opinion; and (vi) anticipated impact that legalisation of assisted death would have on palliative care practice. Important findings include: (i) palliative care specialists are largely opposed to the legalisation of PAD; (ii) the proportional titration of opioids is not understood by any palliative care specialist studied to be 'voluntary euthanasia'; and (iii) there is a wide variation in frequency of requests, and one-third of palliative care specialists express discomfort in dealing with requests for assisted suicide or euthanasia. Key areas for future research at the interface between PAD and best practice end-of-life care are identified, including exploration into why palliative care specialists are largely opposed to PAD, and consideration of the impact 'the opioid misconception' may have on the literature informing this debate. © 2016 Royal Australasian College of Physicians.
Kuziemsky, Craig E; Weber-Jahnke, Jens H; Lau, Francis; Downing, G Michael
As patient care becomes more collaborative in nature, there is a need for information technology that supports interdisciplinary practices of care. This study developed and performed usability testing of a standalone computer-based information tool to support the interdisciplinary practice of palliative severe pain management (SPM). A grounded theory-participatory design (GT-PD) approach was used with three distinct palliative data sources to obtain and understand user requirements for SPM practice and how a computer-based information tool could be designed to support those requirements. The GT-PD concepts and categories provided a rich perspective of palliative SPM and the process and information support required for different SPM tasks. A conceptual framework consisting of an ontology and a set of three problem-solving methods was developed to reconcile the requirements of different interdisciplinary team members. The conceptual framework was then implemented as a prototype computer-based information tool that has different modes of use to support both day-to-day case management and education of palliative SPM. Usability testing of the computer tool was performed, and the tool tested favorably in a laboratory setting. An interdisciplinary computer-based information tool can be developed to support the different work practices and information needs of interdisciplinary team members, but explicit requirements must be sought from all prospective users of such a tool. Qualitative methods such as the hybrid GT-PD approach used in this research are particularly helpful for articulating computer tool design requirements.
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em
Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM
Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188
Piot, Elise; Leheup, Benoît F; Losson, Séverine; Gédor, Lorène; Domina, Lucie; Béhem, Chantal; Amanzouggarene, Malika
Interventions of mobile palliative care teams in nursing homes have been the subject special consideration, however very little data are available on this subject. To determine the proportion of patients followed and consultations conducted in nursing homes for the dependent elderly by a mobile palliative care team, to describe the patients followed and to analyze the various aspects of this intervention. Retrospective study on the interventions carried out by a mobile palliative care team in nursing homes between January 1st and December 31st, 2012. The interventions in nursing homes targeted, 7.2% of the followed patients and represented 8.7% of the total activity of the mobile team. Intervention requests were made primarily by the family physician. The followed patients were mostly women (63%), with a mean age of 84 years, presenting non-cancerous diseases (78.2%), and had an average of 4.4 consultations. Half of the patients died during follow-up. Three quarters of the patients presented pain, neuro-psychological symptoms and verbal communication disorders. Four out of ten patients met with the occupational therapist and one of ten, the psychologist. The activity of mobile palliative care teams remains marginal, although steadily (on the rise. The collected data illustrate the specificity of geriatric palliative care, while certain characteristics inherent to nursing homes require establishing appropriate therapy proposals. Although quantitatively limited, the activity of mobile palliative care teams in nursing homes appears important as these interventions are likely meet the needs of both patients and staff in addition to enabling patients in palliative care to remain at their current place of residence.
Richfield, Edward W; Jones, Edward J S; Alty, Jane E
Parkinson's disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson's disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision. To summarise the evidence base for palliative care in Parkinson's disease, linking current understanding with implications for clinical practice and identifying areas for future research. Convention recognises a final 'palliative phase' in Parkinson's disease, while qualitative studies suggest the presence of palliative care need in Parkinson's disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson's disease, with particular implications for end-of-life care and advance care planning. The 'palliative phase' represents a poor entry point for consideration of palliative care need in Parkinson's disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions. WHAT IS UNKNOWN: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care. Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson's disease.
Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther
Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
Introduction: EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or
Jones, Diana; Lhussier, Monique; Cunningham, Bill
Introduction Policy- and evidence-based guidelines have highlighted the need for improved palliative and end-of-life care. However, there is still evidence of individuals dying undignified deaths with little pain control, therefore inflicting unnecessary suffering. New commissioning powers have enabled a 2-year pilot of an innovative integrated care pathway (ICP) designed to improve arrangements for individuals with life-limiting illnesses requiring palliative care. A novel feature of the ICP is its focus on palliative care over the last 6 months of life, aiming to intervene early to prepare for and ensure a good death. What is not known is if this pathway works, how it works and who it works for. Methods and analysis A realist evaluation and a complex analytical framework will investigate and discover context, mechanism and outcome conjectures and configurations of the ICP and thus facilitate exploration of how it works and who it works for. A mixed methods approach will be used with small sample sizes to capture the breadth of the ICP. Phase 1 will identify if the pathway works through analysis of NHS Morbidity Information Query and Export Syntax data, locality Death Audit data and the Quality of Dying and Death Questionnaire. Phase 2 employs soft systems methodology with data from focus groups with health professionals to identify how the pathway works. Phase 3 uses the Miller Behavioural Style Scale and interviews with palliative care patients and bereaved relatives to analyse communication in palliative care. Ethics and dissemination Ethical approval has been granted from the NHS local ethics committee (REC reference number: 11/NE/0318). Research & Development approval has been gained from four different trusts, and relevant voluntary organisations and the local council have been informed about the research. This protocol illustrates the complexity inherent in evaluating a palliative care ICP. Identification of whether the pathway works, how it works and who
Dalkin, Sonia Michelle; Jones, Diana; Lhussier, Monique; Cunningham, Bill
Policy- and evidence-based guidelines have highlighted the need for improved palliative and end-of-life care. However, there is still evidence of individuals dying undignified deaths with little pain control, therefore inflicting unnecessary suffering. New commissioning powers have enabled a 2-year pilot of an innovative integrated care pathway (ICP) designed to improve arrangements for individuals with life-limiting illnesses requiring palliative care. A novel feature of the ICP is its focus on palliative care over the last 6 months of life, aiming to intervene early to prepare for and ensure a good death. What is not known is if this pathway works, how it works and who it works for. A realist evaluation and a complex analytical framework will investigate and discover context, mechanism and outcome conjectures and configurations of the ICP and thus facilitate exploration of how it works and who it works for. A mixed methods approach will be used with small sample sizes to capture the breadth of the ICP. Phase 1 will identify if the pathway works through analysis of NHS Morbidity Information Query and Export Syntax data, locality Death Audit data and the Quality of Dying and Death Questionnaire. Phase 2 employs soft systems methodology with data from focus groups with health professionals to identify how the pathway works. Phase 3 uses the Miller Behavioural Style Scale and interviews with palliative care patients and bereaved relatives to analyse communication in palliative care. Ethical approval has been granted from the NHS local ethics committee (REC reference number: 11/NE/0318). Research & Development approval has been gained from four different trusts, and relevant voluntary organisations and the local council have been informed about the research. This protocol illustrates the complexity inherent in evaluating a palliative care ICP. Identification of whether the pathway works, how it works and who it works for will be beneficial to all practices and other
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Anderson, Wendy G; Puntillo, Kathleen; Cimino, Jenica; Noort, Janice; Pearson, Diana; Boyle, Deborah; Grywalski, Michelle; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Barbour, Susan; Turner, Kathleen; Moore, Eric; Liao, Solomon; Ferrell, Bruce; Mitchell, William; Edmonds, Kyle; Fairman, Nathan; Joseph, Denah; MacMillan, John; Milic, Michelle M; Miller, Monica; Nakagawa, Laura; O'Riordan, David L; Pietras, Christopher; Thornberry, Kathryn; Pantilat, Steven Z
Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. To implement and evaluate a palliative care professional development program for ICU bedside nurses. From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs. ©2017 American Association of Critical-Care Nurses.
Delibegovic, Adnan; Sinanovic, Osman; Galic, Gordan; Sabic, Adela; Sabic, Dzevad
Objective: Objective of this work is to determine influence of palliative care on the quality of life in patients with lung cancer. Subjects and Methods: Our study group included 40 patients, consecutively selected, which is determined by symptomatic treatment and hospitalized at the Department of Palliative Care of University Clinical Center Tuzla. The control group consisted of 40 patients who had a diagnosis of lung cancer treated at home by an authorized ambulance Health Center Tuzla. Tests in both groups were carried out using the test SF-36 scale for assessing quality of life in period of two weeks. Two-stage test was performed, initially, immediately after disease was diagnosed, and two weeks later. Results: All life quality parameters (general, physical and emotional) were better in second test, in patients who were situated in the department of palliative care (study group) (p<0.0001). In the area of physical health (physical function, physical limitations, pain, general health), in patients who have resided in the department of palliative care (study group), showed a statistically significant improvement in all the aspects (p<0.0001). In the study patients all aspects of mental health were statistically significantly improved after two weeks being in department (p<0.0001). Conclusion: Two weeks treatment of patients with lung cancer in the Department of Palliative Care significantly improve all general aspects of quality of life. PMID:28144191
Many life-limiting and progressive disorders require effective pain-management strategies. The use of opioids is one facet of pain management and the National Institute for Health and Clinical Excellence Clinical has produced guidance on this. One of the primary messages from the guideline is the need for careful assessment and excellent communication. This article discusses the various recommendations included in the guideline, covering issues of correct dosage, understanding patients' expectations and fears, ongoing monitoring and management of the side-effects associated with opioids.
Jamwal, Nisha Rani; Kumar, Senthil P
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
Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.
Wilcox, Sarah K
Patients with Parkinson's disease have an illness which shortens their life and involves a heavy symptom burden for patient and carer. This article discusses some common palliative care issues pertinent to patients with Parkinson's disease.
Mol, Rani P
The palliative doctor gives the 'touch of God' as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.
Carter, Brian S
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.
This study reports data gathered via extensive interviews with some of the leading authorities on the euthanasia policy that were conducted in the Netherlands. They were asked: It has been argued that the policy and practice of euthanasia in the Netherlands is the result of undeveloped palliative care. What do you think? I also mentioned the fact that there are only a few hospices in the Netherlands. The responses were different and contradictory. Many interviewees agreed with the statement. Almost all of those agreeing with it said that only during the late 1990s were people beginning to admit that there was a need to improve palliative care. Some interviewees insisted that doctors first need to explore other options for helping the patient prior to choosing the course of euthanasia. Other interviewees thought that palliative care is well developed in the Netherlands and that euthanasia has actually paved the way for calling more attention to palliative care.
Patients receiving palliative care experience extreme vulnerability reminding them of the fragility of their human condition. How are they to trust nurses bearing bad news in these crucial moments? Trust is built on team coherence and rigorous support.
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.
... quality of life. Palliative care is different from hospice care. Palliative care is available to you at any ... include: • Will I have to give up my primary health care provider? • What do I say if ...
Gelfman, Laura P; Kavalieratos, Dio; Teuteberg, Winifred G; Lala, Anuradha; Goldstein, Nathan E
Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Sommerbakk, Ragni; Moyle, Wendy; Hjermstad, Marianne J; Leppert, Wojciech; Vissers, Kris; Engels, Yvonne
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.
Vollenbroich, René; Borasio, Gian Domenico; Duroux, Ayda; Grasser, Monika; Brandstätter, Monika; Führer, Monika
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
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
Holden, J D
To document the delivery and outcome of palliative care in one practice. All appropriate deaths were documented over the period of the study. One general practice of four doctors caring for 8000 patients in the North-West of England. All patients dying of malignant disease which had included a palliative phase of at least one week. Place of death; continuity of care; general practitioners' assessment of symptom relief; follow-up of bereaved relatives. 118 deaths from terminal malignant disease were recorded over eight years in my practice. 75% were being cared for by us (GPs) at the time of death. More detailed information was recorded on 64 of these patients showing generally "satisfactory" care. A simple audit can help maintain high standards of palliative care. General practitioners are encouraged to maintain registers of the care received by terminally-ill patients as an aid to quality assurance in this area.
Dwyer, Justin; Taylor, Keryn; Boughey, Mark
Patients who articulate their psychological distress primarily through physical symptoms (referred to as medically unexplained symptoms (MUS)) pose a challenge to the skills of most clinicians, including palliative care physicians. The philosophical underpinnings of palliative care with a stated focus on symptom management and care of the person in their psychosociospiritual context lend itself to the care of these patients. The aim of this study was to investigate the characteristics to improve identification of this patient group within palliative care. Here, we report a case series of 6 patients with severe MUS who were referred to palliative care. We use illustrative case vignettes, examine clinical and demographic characteristics and review the perspectives of the multidisciplinary team to identify the common threads. This case series highlights the complexities and challenges that are inherent in providing assessment and care for patients with MUS that present to palliative care. Characteristics that were identified included the clustering of 'trigger' symptoms, backgrounds of multiple chronic illnesses and relationship dysfunction. Patient outcomes in this group were universally poor, including the death of 2 patients. Knowledge of this patient group is vital given the likely increase in prevalence of MUS as palliative care broadens its focus earlier in the trajectory of illness. The strengths of palliative care, including psychosociospiritual assessment, multidisciplinary input and communication skills holds the potential to accurately identify patients with MUS and allow the opportunity for specialist psychiatric input with the hope of improving outcomes for patients and their families. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Wysham, Nicholas G; Cox, Christopher E; Wolf, Steven P; Kamal, Arif H
A growing evidence base supports provision of palliative care services alongside life-prolonging care. Whereas palliative care processes have been implemented widely in the care of patients with lung cancer, the same is not true for patients with chronic, progressive lung disease. To compare the symptom burden of chronic lung disease with that of lung cancer at the time of initial palliative care consultation. Data were abstracted from the Carolinas Palliative Care Consortium's Quality Data Collection Tool, an electronic database used by seven academic and community palliative care practices in multiple states for quality improvement purposes. We analyzed data derived from first palliative care encounters collected during a 2-year period, including the primary diagnosis of chronic lung disease or lung cancer, unresolved symptoms, setting of initial palliative care encounter, Palliative Performance Scale status, and on that basis we estimated prognosis for survival. We compared key clinical variables between chronic lung disease and lung cancer using Kruskal-Wallis and χ(2) tests. We identified 152 patients with lung cancer and 86 patients with chronic lung disease. Of the total sample, 53% were women and 87% were white. Patients with chronic lung disease were more likely than those with lung cancer to have the initial palliative care encounter occur in the intensive care unit (17% vs. 6%; P = 0.005) and less likely as an outpatient (20% vs. 56%; P < 0.0001). Patients with chronic lung disease were also less likely to have a high Palliative Performance Scale status (14% vs. 30%; P = 0.009) but more likely to have an estimated prognosis for survival longer than 6 months (51% vs. 28%; P = 0.002). The most prevalent symptoms were dyspnea (55% vs. 42%) and pain (40% vs. 52%), neither of which differed between groups (P = 0.08). Patients with chronic lung disease have symptom burdens similar to those of patients with lung cancer at the time of first
Busolo, David; Woodgate, Roberta
bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers
Yamaguchi, Takashi; Kuriya, Meiko; Morita, Tatsuya; Agar, Meera; Choi, Youn Seon; Goh, Cynthia; Lingegowda, K B; Lim, Richard; Liu, Rico K Y; MacLeod, Roderick; Ocampo, Rhodora; Cheng, Shao-Yi; Phungrassami, Temsak; Nguyen, Yen-Phi; Tsuneto, Satoru
Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Doumit, Myrna A A; Abu-Saad Huijer, Huda; Kelley, Jane H
The purpose of this study was to uncover the lived experience of Lebanese oncology patients receiving palliative care. The study design was based on the Utrecht School of Phenomenology based on the Dutch school of phenomenology. This study followed purposeful sampling in which ten participants, six women, and four men, with a mean age of 54.4 years were selected. In-depth semi-structured interviews along with observation field notes were used as the source for data collection. Data were analyzed using the hermeneutic phenomenological approach based on the Utrecht School of Phenomenology. The participants highlighted their distress from being dependent; their dislike for pity; their worry for the family and the worry about the family's worry; their reliance on God and divinity; their dislike of the hospital stay; their need to be productive; their fear of pain; and their need to communicate. Specific nursing actions related to the themes would include exploring patients' ideas, beliefs, and experiences regarding pain, and improved communication among patient, family, and the health care providers.
Scherer, Jennifer S; Wright, Rebecca; Blaum, Caroline S; Wall, Stephen P
A diagnosis of advanced chronic kidney disease (CKD), or end stage renal disease (ESRD) represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual's values and goals. This special report describes application of participatory action research (PAR) methods to develop an outpatient integrated nephrology and palliative care program. Stakeholder concerns were thematically analyzed to inform translation of a known successful model of outpatient kidney palliative care to a practice in a large, urban medical center in the United States. Stakeholder needs and challenges to meeting these needs were identified. We uncovered a shared understanding of the clinical need for palliative care services in nephrology practice, but apprehension towards practice change. Action steps to modify the base model were created in response to stakeholder feedback. The development of a model of care that provides a new approach to clinical practice requires attention to relevant stakeholder concerns. PAR is a useful methodological approach that engages stakeholders and builds partnerships. This creation of shared ownership can facilitate innovation and practice change. We synthesized stakeholder concerns to build a conceptual model for an integrated nephrology and palliative care clinical program. Copyright © 2017. Published by Elsevier Inc.
Fitch, Margaret I.; DasGupta, Tracey; Ford, Bill
Caring for individuals at the end of life in the hospital environment is a challenging proposition. Understanding the challenges to provide quality end of life care is an important first step in order to develop appropriate approaches to support and educate staff members and facilitate their capacity remaining “caring.” Four studies were undertaken at our facility to increase our understanding about the challenges health professionals experience in caring for patients at end of life and how staff members could be supported in providing care to patients and families: (1) In-depth interviews were used with cancer nurses (n = 30) to explore the challenges talking about death and dying with patients and families; (2) Surveys were used with nurses (n = 27) and radiation therapists (n = 30) to measure quality of work life; (3) and interprofessional focus groups were used to explore what it means “to care” (five groups held); and (4) interprofessional focus groups were held to understand what “support strategies for staff” ought to look like (six groups held). In all cases, staff members confirmed that interactions concerning death and dying are challenging. Lack of preparation (knowledge and skill in palliative care) and lack of support from managers and colleagues are significant barriers. Key strategies staff members thought would be helpful included: (1) Ensuring all team members were communicating and following the same plan of care, (2) providing skill-based education on palliative care, and (3) facilitating “debriefing” opportunities (either one-on-one or in a group). For staff to be able to continue caring for patients at the end of life with compassion and sensitivity, they need to be adequately prepared and supported appropriately. PMID:27981141
Dudgeon, Deborah J; Knott, Christine; Eichholz, Mary; Gerlach, Jacqueline Lochhaas; Chapman, Cheryl; Viola, Raymond; Van Dijk, Janice; Preston, Sharon; Batchelor, Diane; Bartfay, Emma
This study evaluated the effectiveness of implementation of common assessment tools, collaborative care plans, and symptom management guidelines for cancer patients as a strategy to improve the quality, coordination, and integration of palliative care service across organizations and health care sectors. A pre-post design to measure the impact on symptom management, caregiver burden and satisfaction with care delivery, and service utilization was used. Two cohorts of eligible patients and caregivers completed Edmonton Symptom Assessment Scales, Caregiver Reaction Assessment and FAMCARE Scales and chart audits were conducted. Administrative data from each participating site were examined for utilization trends. Audits of 53 charts preimplementation and 63 postimplementation showed an increase in documentation of pain from 24.5% to 74.6% (P<0.001) of charts. Administrative data showed a decrease in the percentage of patients with at least one emergency room visit from 94.3% to 84.8% (P<0.001), in the percentage of patients with at least one admission to the acute care hospital (P<0.001), and deaths in acute care 43.1%-35.7% (P=0.133). There was minimal change in the intensity of symptoms (P=0.591), and no change in the burden on the caregiver (P=0.086) or caregiver satisfaction with care (P=0.942). This study showed that implementation of common assessment tools, collaborative care plans, and symptom management guidelines across health sectors can result in some increased documentation of symptoms and efficiencies in care. Future projects should consider imbedding a continuous quality improvement methodology and longer timelines into their projects to improve outcomes.
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
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.
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
Liberman, D B; Song, E; Radbill, L M; Pham, P K; Derrington, S F
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Initiating palliative care services in the outpatient primary care setting is
Nakazawa, Kazuhiro; Kizawa, Yoshiyuki; Maeno, Takami; Takayashiki, Ayumi; Abe, Yasushi; Hamano, Jun; Maeno, Tetsuhiro
To clarify physicians' practices and attitudes regarding advance care planning (ACP) in palliative care units (PCUs) in Japan, we conducted a self-completed questionnaire survey of 203 certificated PCUs in 2010. Ninety-nine physicians participated in the survey. Although most Japanese palliative care physicians recognized the importance of ACP, many failed to implement aspects of patient-directed ACP that they acknowledged to be important, such as recommending completion of advance directives (ADs), designation of health care proxies, and implementing existing ADs. The physicians' general preference for family-centered decision making and their feelings of difficulty and low confidence regarding ACP most likely underlie these results. The discrepancy between physicians' practices and their recognition of the importance of ACP suggests an opportunity to improve end-of-life care. © The Author(s) 2013.
Mertnoff, Rosa; Vindrola-Padros, Cecilia; Jacobs, Mariana; Gómez-Batiste, Xavier
The Latin American Association for Palliative Care (ALCP) developed 10 indicators to monitor the development of palliative care. The indicators have been applied across Latin American countries but have not been used internally. The aims of this study were to document the development of palliative care in Argentina at the national and provincial levels by using a selection of the indicators developed by the ALCP and identify the difficulties and needs of healthcare professionals working in palliative care. This is the first study to apply the indicators intranationally. This was a cross-sectional pilot study based on two questionnaires with representatives from each province, one workshop, and telephone conversations to corroborate the collected data. These data were used to calculate a preselection of eight ALCP indicators covering four main areas of development: education, policy, service delivery, and medication. A total of 30 participants took part in the study. The application of the ALCP indicators at the province level led to the identification of inequalities in the development and distribution of services across the country. The provinces in the north-west were identified as the region with the greatest need for development. The main difficulties for healthcare professionals were lack of national service registries, certified palliative care specialties, and opportunities for continuous training. The ALCP indicators are useful tools for mapping palliative care development within countries. Further work needs to be carried out to increase their specificity and integrate them in policy design and service delivery.
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
Gatrad, A R; Sheikh, A
National and European directives have now enshrined within European law the requirement that healthcare professionals provide their patients with culturally appropriate and sensitive care. Although well intentioned, many health professionals find it difficult to translate these directives into practice. Barriers to providing culturally competent care include racism, institutional discrimination and gaps in our understanding of the interface between culture and health--this latter factor reflecting the lack of training in transcultural health care. In this paper, we concentrate on issues relating to the provision of palliative care near death to Muslims of South Asian origin in the UK, although much of what is said will equally be applicable to Muslims from other parts of the world. This is the first of two articles giving insights into the palliative care of Muslims. The second article 'Palliative care of Muslims and issues after death' will appear in a later issue.
Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet
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.
Jubb, A M
Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects. This critique aims to appraise the need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research.
Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B
We present a case of a patient diagnosed with glioblastoma multiforme refractory to treatment. Glioblastoma multiforme is the most common primary brain tumour and unfortunately the most aggressive, with an estimated mortality of about 90% in the first year after diagnosis. In our case the patient had reached a stage of life where quality of life was importsnt, with palliative care being the only recourse. The family is the mainstay in the provision of care of terminally ill patients, and without their active participation it would be difficult to achieve the objectives in patient care. We must also consider the family of the terminally ill in our care aim, as its members will experience a series of changes that will affect multiple areas where we should take action. Copyright © 2012 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España. All rights reserved.
Weeks, Lori E; Macquarrie, Colleen; Bryanton, Olive
In this research, we endeavoured to gain a clearer understanding of what impact hospice palliative care (HPC) volunteers have on family caregivers and the underlying factors that contribute to this. We conducted ten face-to-face interviews with bereaved women who had previously provided care for their spouses and who used HPC volunteers. We checked our interpretation through a feedback focus group. Using a methodological hermeneutic approach, we came to understand the unique position HPC volunteers occupy within the formal health care system. Our constitutive organizing theme was manifest throughout the women's stories in seven thematic areas that explicate the dimensions of the overarching theme: the Unique Care Link. We identified seven themes that exemplify specific ways in which HPC volunteers have a positive impact on the lives of spousal caregivers. This knowledge can be incorporated into the further development of training and support programs for HPC volunteers, and to increase the quality of volunteer HPC services provided to family members.
On July 20, 2015, the federal Centers for Medicare & Medicaid Services (CMS) announced hospices that have been selected to participate in the Medicare Care Choices Model. Fewer than half of the Medicare beneficiaries use hospice care for which they are eligible. Current Medicare regulations preclude concurrent palliative and curative care. Under the Medicare Choices Model, dually eligible Medicare beneficiaries may elect to receive supportive care services typically provided by hospice while continuing to receive curative services. This report describes how CMS has expanded the model from an originally anticipated 30 Medicare-certified hospices to over 140 Medicare-certified hospices and extended the duration of the model from 3 to 5 years. Medicare-certified hospice programs that will participate in the model are listed.
Atkins, L.F.; Mausner, L.F.; Meinken, G.E.
Sn-117m(4+)DTPA prepared at Brookhaven National Laboratory has favorable physical and biological characteristics for use as a palliative agent to relieve pain from osseous metastases. The short range of the emitted conversion electrons permits large bone radiation doses without excessive radiation to the bone marrow. An accompanying 158.6 keV gamma is useful for monitoring the distribution. The T1/2 of 13.6 days provides an adequate shelf life. A previous study in humans has demonstrated favorable dosimetry with a bone surface dose of approximately 57.9 mGy/MBq and a bone surface to marrow ratio of 10:1. This study was instituted to find a dose level which was effective and to monitor effects on bone marrow. Sn-117m was administered to 14 patients. Administered activity ranged between 66 and 573 MBq or 1.2-5.8 MBq/kg body weight. At the lower dose levels (<3.1 MBq/kg, n=7), 1 obtained good relief of pain, 1 partial relief, and 1 no relief. The remaining 4 were not evaluated because of the need for further treatment of soft tissue disease or because of intervening death. The 7 patients treated at the higher dose level (4.8-5.8 MBq/kg) included patients with prostate (3), breast (3) and unknown (1) primary cancers. All patients experienced relief of pain, 5 excellent and 2 partial. No marrow suppression was observed as a result of Sn-117m therapy. Initial observations indicate that Sn-117m DTPA is effective in palliation of pain from osseous metastases without producing bone marrow suppression. Further studies at a higher dose level are planned.
Hofmann, Sonja; Hess, Stephanie; Klein, Carsten; Lindena, Gabriele; Radbruch, Lukas; Ostgathe, Christoph
Anxiety is one of the most common psychological symptoms in patients in a palliative care situation. This study aims to develop a predictive model for anxiety using data from the standard documentation routine. Data sets of palliative care patients collected by the German quality management benchmarking system called Hospice and Palliative Care Evaluation (HOPE) from 2007 to 2011 were randomly divided into a training set containing two-thirds of the data and a test set with the remaining one-third. We dichotomized anxiety levels, proxy rated by medical staff using the validated HOPE Symptom and Problem Checklist, into two groups with no or mild anxiety versus moderate or severe anxiety. Using the training set, a multivariable logistic regression model was developed by backward stepwise selection. Predictive accuracy was evaluated by the area under the receiver operating characteristic curve (AUC) based on the test set. An analysis of 9924 data sets suggests a predictive model for anxiety in patients receiving palliative care which contains gender, age, ECOG, living situation, pain, nausea, dyspnea, loss of appetite, tiredness, need for assistance with activities of daily living, problems with organization of care, medication with sedatives/anxiolytics, antidepressants, antihypertensive drugs, laxatives, and antibiotics. It results in a fair predictive value (AUC = 0.72). Routinely collected data providing individual-, disease- and therapy-related information contain valuable information that is useful for the prediction of anxiety risks in patients receiving palliative care. These findings could thus be advantageous for providing appropriate support for patients in palliative care settings and should receive special attention in future research.
Sánchez-Holgado, J; Gonzalez-Gonzalez, J; Torijano-Casalengua, M L
To analyze the level of knowledge in palliative care that health and non health housing for the elderly workers refer, to study the differences between professional categories and to detect their interest in receiving palliative care training. Cross-sectional study conducted among physicians, nurses, physiotherapists, nursing assistant and occupational therapists applying a questionnaire assisting terminal patients with 22 items grouped into four sections: generalities palliative care, physical care, psycho-emotional and spiritual. Each question is answered using a four point scale in much-regulate-little-nothing. 86.8% of respondents know quite what they mean or regular palliative care. 3.8% consider themselves sufficiently trained in palliative care. We found significant differences in non-pharmacological management of dyspnea and insomnia where concerns have less knowledge worker. Medicine and nursing reported having more knowledge in the recognition of a tumor ulcer. There is a very high interest in receiving palliative care training and these are considered very useful. Required impact on the acquisition of knowledge in the medical staff not optional as to non-pharmacological management of major symptoms It also emphasizes the need to approach not to question the patient's pain by physicians. The test to detect cognitive impairment are not well known for nursing assistants. The spiritual realm is the acceptable level of knowledge on the part of all professional categories surveyed. Copyright © 2014 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.
Gilbert, Julie E; Howell, Doris; King, Susan; Sawka, Carol; Hughes, Erin; Angus, Helen; Dudgeon, Deborah
The Provincial Palliative Care Integration Project (PPCIP) was implemented in Ontario, Canada, to enhance the quality of palliative care delivery. The PP