Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team. PMID:23875957
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 ...
Comfort care; End of life - palliative care; Hospice - palliative care ... Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins ...
Chaturvedi, S K; Chandra, P S
While India has a long tradition of home-based spiritual and religious care of the dying, there has been no contemporary palliative care until relatively recently. The existing and planned palliative care services in India are presented, and future perspectives and the opportunities for training for both professionals and lay volunteers are discussed. PMID:9540164
To the Editor: Kelley and Morrison (Aug. 20 issue)(1) describe the changes in palliative care over the past decade and its distinct meaning vis-à-vis hospice care in the United States and, increasingly, most other countries. Unfortunately, the category of "most countries" does not include many countries in Asia, where attitudes and practices vary widely according to regional, economic, cultural, and religious differences and differences in legal systems.(2) Neither does this category include Iran, a nation of more than 75 million people in which medical science is advanced; sophisticated therapies such as kidney, heart, and lung transplantation are available; and investigational . . . PMID:26605938
Hashemian, S Mohammadreza; Beheshti, Shahid; Miller, James
To the Editor: Kelley and Morrison (Aug. 20 issue)(1) describe the changes in palliative care over the past decade and its distinct meaning vis-à-vis hospice care in the United States and, increasingly, most other countries. Unfortunately, the category of "most countries" does not include many countries in Asia, where attitudes and practices vary widely according to regional, economic, cultural, and religious differences and differences in legal systems.(2) Neither does this category include Iran, a nation of more than 75 million people in which medical science is advanced; sophisticated therapies such as kidney, heart, and lung transplantation are available; and investigational . . . PMID:26605939
McGovern, Terrance; Catapano, Anthony; Shroff, Ninad
To the Editor: Kelley and Morrison (Aug. 20 issue)(1) describe the changes in palliative care over the past decade and its distinct meaning vis-à-vis hospice care in the United States and, increasingly, most other countries. Unfortunately, the category of "most countries" does not include many countries in Asia, where attitudes and practices vary widely according to regional, economic, cultural, and religious differences and differences in legal systems.(2) Neither does this category include Iran, a nation of more than 75 million people in which medical science is advanced; sophisticated therapies such as kidney, heart, and lung transplantation are available; and investigational . . . PMID:26605940
Cinnamon, Jonathan; Schuurman, Nadine; Crooks, Valorie A
Background Providing palliative care is a growing priority for health service administrators worldwide as the populations of many nations continue to age rapidly. In many countries, palliative care services are presently inadequate and this problem will be exacerbated in the coming years. The provision of palliative care, moreover, has been piecemeal in many jurisdictions and there is little distinction made at present between levels of service provision. There is a pressing need to determine which populations do not enjoy access to specialized palliative care services in particular. Methods Catchments around existing specialized palliative care services in the Canadian province of British Columbia were calculated based on real road travel time. Census block face population counts were linked to postal codes associated with road segments in order to determine the percentage of the total population more than one hour road travel time from specialized palliative care. Results Whilst 81% of the province's population resides within one hour from at least one specialized palliative care service, spatial access varies greatly by regional health authority. Based on the definition of specialized palliative care adopted for the study, the Northern Health Authority has, for instance, just two such service locations, and well over half of its population do not have reasonable spatial access to such care. Conclusion Strategic location analysis methods must be developed and used to accurately locate future palliative services in order to provide spatial access to the greatest number of people, and to ensure that limited health resources are allocated wisely. Improved spatial access has the potential to reduce travel-times for patients, for palliative care workers making home visits, and for travelling practitioners. These methods are particularly useful for health service planners – and provide a means to rationalize their decision-making. Moreover, they are extendable to a number of health service allocation problems. PMID:18590568
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila
Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290?U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743
... such as lymphedema , pain management, sexual functioning, or psychosocial issues. A patient may also receive palliative care ... 2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx . Does NCI support palliative care ...
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
Silver, Julie K; Raj, Vishwa S; Fu, Jack B; Wisotzky, Eric M; Smith, Sean Robinson; Kirch, Rebecca A
Palliative care and rehabilitation practitioners are important collaborative referral sources for each other who can work together to improve the lives of cancer patients, survivors, and caregivers by improving both quality of care and quality of life. Cancer rehabilitation and palliative care involve the delivery of important but underutilized medical services to oncology patients by interdisciplinary teams. These subspecialties are similar in many respects, including their focus on improving cancer-related symptoms or cancer treatment-related side effects, improving health-related quality of life, lessening caregiver burden, and valuing patient-centered care and shared decision-making. They also aim to improve healthcare efficiencies and minimize costs by means such as reducing hospital lengths of stay and unanticipated readmissions. Although their goals are often aligned, different specialized skills and approaches are used in the delivery of care. For example, while each specialty prioritizes goal-concordant care through identification of patient and family preferences and values, palliative care teams typically focus extensively on using patient and family communication to determine their goals of care, while also tending to comfort issues such as symptom management and spiritual concerns. Rehabilitation clinicians may tend to focus more specifically on functional issues such as identifying and treating deficits in physical, psychological, or cognitive impairments and any resulting disability and negative impact on quality of life. Additionally, although palliative care and rehabilitation practitioners are trained to diagnose and treat medically complex patients, rehabilitation clinicians also treat many patients with a single impairment and a low symptom burden. In these cases, the goal is often cure of the underlying neurologic or musculoskeletal condition. This report defines and describes cancer rehabilitation and palliative care, delineates their respective roles in comprehensive oncology care, and highlights how these services can contribute complementary components of essential quality care. An understanding of how cancer rehabilitation and palliative care are aligned in goal setting, but distinct in approach may help facilitate earlier integration of both into the oncology care continuum-supporting efforts to improve physical, psychological, cognitive, functional, and quality of life outcomes in patients and survivors. PMID:26314705
... HUMAN SERVICES National Institutes of Health Proposed Collection; Comment Request: Palliative Care.... Proposed Collection Palliative Care: Conversations Matter Evaluation -0925--New--National Institute of... developed Palliative Care: Conversations Matter, a pediatric palliative care campaign to address...
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
End of life - pain management; Hospice - pain management ... or if you have side effects from your pain treatments. ... Bookbinder M, McHugh ME. Symptom management in palliative care and ... Medicine . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap ...
... 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...
... Questions Resources and Frequently Asked Questions NINR Palliative Care Resources: NINR’s brochure, Palliative Care: The Relief You ... Strengths.” Frequently Asked Questions 1. What is palliative care and when is it provided? Palliative care is ...
Pollens, Robin D.
Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…
Schenker, Yael; Crowley-Matoka, Megan; Dohan, Daniel; Rabow, Michael W.; Smith, Cardinale B.; White, Douglas B.; Chu, Edward; Tiver, Greer A.; Einhorn, Sara; Arnold, Robert M.
Purpose: Recent research and professional guidelines support expanded use of outpatient subspecialty palliative care in oncology, but provider referral practices vary widely. We sought to explore oncologist factors that influence referrals to outpatient palliative care. Methods: Multisite, qualitative interview study at three academic cancer centers in the United States with well-established palliative care clinics. Seventy-four medical oncologists participated in semistructured interviews between February and October 2012. The interview guide asked about experiences and decision making regarding outpatient palliative care use. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine themes related to palliative care referral decisions. Results: We identified three main oncologist barriers to subspecialty palliative care referrals at sites with comprehensive palliative care clinics: persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy, a predominant belief that providing palliative care is an integral part of the oncologist's role, and a lack of knowledge about locally available services. Participants described their views of subspecialty palliative care as evolving in response to increasing availability of services and positive referral experiences, but emphasized that views of palliative care as valuable in addition to standard oncology care were not universally shared by oncologists. Conclusions: Improving provision of palliative care in oncology will likely require efforts beyond increasing service availability. Raising awareness of ways in which subspecialty palliative care complements standard oncology care and developing ways for oncologists and palliative care physicians to collaborate and integrate their respective skills may help. PMID:24301842
The orientation of life before death towards a quality as high as possible leads to an understanding of palliative medicine not as a pure medical discipline but rather as an integral approach of different disciplines, professions and services, combining several sectors and not being restricted to professionals. Within this change of patterns the pastoral care contribution is developed from professional clinical pastoral care, at first the pastoral care attitude in palliative medicine, challenged by the irritating expectation which dying and death every time demands of all involved. Basics of general mourning research and tasks of bereavement counselling are explained for elaboration as well as theological basics of a Christian human dignity concept. Different competence areas of pastoral care are linked to the dimensions of myth, ethos and rite. Finally a couple of tasks and challenges concerning interreligious cooperation, the cooperating with relatives and volunteers as well as structural questions of pastoral care are mentioned. PMID:17072509
Moon, Paul J
Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and palliative care related to end-of-life circumstances. Specifically, the complementarity of grief and palliative care, as well as a controvertible view thereof, will be considered. PMID:25278758
McKenna, Maria; Clark, Stephen C
Cardiopulmonary transplantation is a life-prolonging therapy available to a select population of patients with cardiac or respiratory failure. Transplantation is associated with significant morbidity, mortality and unmet palliative care need. Despite recommendations that palliative care should be a core component of the heart and lung transplant process, collaboration within clinical practice is extremely rare. A key reason for this is the misperception among patients, their families and transplant clinicians, that palliative care is analogous with end of life care. Other challenges include prognostication, communication, and the balance of hope and reality. We suggest a change in clinical practice within cardiopulmonary transplantation, whereby palliative care takes place alongside active management. Greater partnership working will demonstrate clinical credibility and highlight the impact of palliative care interventions. Education is required to address current misperceptions and further research should explore the effect of initiatives to improve palliative care provision for this patient group. PMID:25812577
... 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 • ...
Your hub for palliative care innovation, development and growth. CAPC Central / Login / Register Login Register Home For Providers For Providers CAPC provides the essential tools, training, technical ...
Morrison, R. Sean
Purpose of review To summarize the current United States healthcare system and describe current models of palliative care delivery. Recent findings Palliative care services in the USA have been heavily influenced by the public–private fee-for-service reimbursement system. Hospice provides care for 46% of adults at the end-of-life under the Medicare hospice benefit. Palliative care teams in hospitals have rapidly expanded to provide care for seriously ill patients irrespective of prognosis. To date, over two-thirds of all hospitals and over 85% of mid to large size hospitals report a palliative care team. With the passage of the Patient Protection and Affordable Care Act of 2010, healthcare reform provides an opportunity for new models of care. Summary Palliative care services are well established within hospitals and hospice. Future work is needed to develop quality metrics, create care models that provide services in the community, and increase the palliative care workforce. PMID:23635879
Lofgren, Sarah; Friedman, Rachel; Ghermay, Rahwa; George, Maura; Pittman, John Richard; Shahane, Amit; Zeimer, Dorothy; Del Rio, Carlos; Marconi, Vincent C
Increasingly clinicians are using palliative care to address the symptomatic and psychosocial effects of disease often missed by routine clinical care, termed "early" palliative care. Within an inner-city medical center, we began a program to integrate early palliative care into HIV inpatient care. Patient symptom burden and desired services were assessed and compared to provider perceptions of patient's needs. From 2010-2012, 10 patients, with a median CD4+ T-cell count of 32.5 cells/?L, and 34 providers completed the survey. Providers ranked their patients' fatigue, sadness, anxiety, sexual dysfunction, and body image significantly higher than patients it for themselves. Patients ranked medical care, pharmacy, social work, physical therapy, and housing as significantly more important to them than providers estimated them to be. These differences may reflect the fact that physicians often overlook patients' unmet basic needs. Early palliative care may narrow this gap between providers' and patients' perceptions of needs through good communication and targeting barriers, such as housing instability, which are vital to overcome for consistent long-term follow up. PMID:25216735
Beernaert, Kim; Deliens, Luc; Pardon, Koen; Van den Block, Lieve; Devroey, Dirk
Background Many people who might benefit from specialist palliative care services are not using them. Aim We examined the use of these services and the reasons for not using them in a population in potential need of palliative care. Methods We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium. Results Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer). Conclusions Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority. PMID:26356477
Finlay, I G; Jones, O L
Complementary therapies have found increasing vogue in the management of patients with cancer, although little formal evaluation has been undertaken. We report on our experience of offering hynotherapy to palliative care outpatients in a hospice day care setting. During 2 1/2 years, 256 patients had hypnotherapy, all singly; two-thirds (n = 104) were women. Only 13% (n = 21) had four or more treatment sessions. At the time of survey, the 52 patients still alive were mailed an evaluation sheet, of whom 41 responded. 61% reported improved coping with their illness. 7% (n = 3) reported harmful or negative effects from hypnotherapy. Amongst those whose coping was unchanged, many found the therapy a pleasant experience. 35 respondents (85%) appended positive comments to their questionnaire returns. Despite the limitations of a retrospective questionnaire, our findings suggest that hypnotherapy, used within strict guidelines in patients with advanced cancer, is a safe complementary therapy to enhance coping. PMID:8949516
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 available for cancer patients or their families, absence of organizations strategic planning for palliative care, No presence of educational resources for palliative care, No presence of communication or consultation to the clergy man, Absence of bereavement support group, no active follow up for the patient and the family, no standards for palliative care service or training programs in palliative care, no home care service for palliative care, absence of community awareness for palliative care And Absence of national standard for palliative care. The recommendations that we can conclude, depending on the needs assessment that we did, and according to the recommendations that come up through the workshop that was organized by Al-Sadeel Society and was attended by key personnel from the Palestinian MOH who summarized the conclusion, are as follows: 1.?The need for better quality care for the cancer patient.2.?The need for training of health professionals in palliative care.3.?The importance of networking and cooperation between the national NGO's and the MOH.4.?The need for public awareness regarding the early detection for cancer especially breast cancer.5.?The need for national policy and standards for palliative care and opioids legislations.6.?The importance of base line data and research. 7.?The need for interdisciplinary team work in the issue of cancer. 8.?To involve palliative care education within the curriculum of schools of health professions. PMID:21448041
Dorf, Martin E.
Directors Guest Faculty Eva H. Chittenden, MD, FACP, FAAHPM Director of Educational Programs, Palliative Unit, Mount Sinai Medical Center, New York Project Director, Center to Advance Palliative Care, IPAL-ICU Project Professor of Medicine, Mount Sinai School of Medicine Douglas White, MD, MAS UPMC Endowed Chair
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)
Field, D; McGaughey, J
An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status. PMID:9616444
Stjernswärd, Jan; Foley, Kathleen M; Ferris, Frank D
Good policies lay the groundwork for an effective health care system and society. They facilitate the implementation of palliative care programs aimed at providing care for all people in need of these services, and they ensure equitable access to affordable medications and therapies. The lack of good policies can lead to unnecessary suffering and costs for patients, families, and society. Three-quarters of cancer patients worldwide are incurable when diagnosed. Because the size of the problem--and the suffering associated with cancer--is enormous, development of a national cancer control policy is an effective point of entry to begin integrating palliative care into a country's health care system. To be comprehensive, every cancer center must include palliative care. Ideally, palliative care is incorporated as a priority within all aspects of each country's national health plan, so that all patients living with or dying from any chronic disease may have their suffering relieved, including children and the elderly. To this end, policies that address essential medicines must include a list of palliative care medications. Supplies of affordable, generic medications that are "equally efficient" must be adequate and available throughout the country wherever patients live (especially opioids for pain control). PMID:17482040
Skip to main content National Hospice and Palliative Care Organization Login Username * Password * Create new account Forgot ... Advisory Council Ethics Advisory Council Global Partners In Care Advisory Council Palliative Care Advisory Council Pediatrics Advisory ...
Hall, Karen Lynn; Rafalson, Lisa; Mariano, Kathleen; Michalek, Arthur
This study evaluated current hospital-based palliative care programs using recommendations from the Center to Advance Palliative Care (CAPC) as a framework. Seven hospitals located in Buffalo, New York were included based on the existence of a hospital-based palliative care program. Data was collected from August through October of 2013 by means of key informant interviews with nine staff members from these hospitals using a guide comprised of questions based on CAPC's recommendations. A gap analysis was conducted to analyze the current state of each hospital's program based upon CAPC's definition of a quality palliative care program. The findings identify challenges facing both existing/evolving palliative care programs, and establish a foundation for strategies to attain best practices not yet implemented. This study affirms the growing availability of palliative care services among these selected hospitals along with opportunities to improve the scope of services in line with national recommendations. PMID:25294226
Addington-Hall, Julia M; Karlsen, Saffron
This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services. PMID:15690867
Wright, Michael; Wood, Justin; Lynch, Thomas; Clark, David
Palliative care is coming to be regarded as a human right. Yet globally, palliative care development appears patchy and comparative data about the distribution of services are generally unavailable. Our purpose is to categorize hospice-palliative care development, country by country, throughout the world, and then depict this development in a series of world and regional maps. We adopt a multimethod approach, which involves the synthesis of evidence from published and grey literature, regional experts, and a task force of the European Association of Palliative Care. Development is categorized using a four-part typology constructed during a previous review of palliative care in Africa. The four categories are (1) no identified hospice-palliative care activity, (2) capacity building activity but no service, (3) localized palliative care provision, and (4) countries where palliative care activities are approaching integration with mainstream service providers. We found palliative care services in 115/234 countries. Total countries in each category are as follows: (1) no identified activity 78 (33%), (2) capacity building 41 (18%), (3) localized provision 80 (34%), and (4) approaching integration 35 (15%). The ratio of services to population among Group 4 countries ranges from 1:43,000 (in the UK) to 1:4.28 million (in Kenya); among Group 3 countries it ranges from 1:14,000 (in Gibraltar) to 1:158 million (in Pakistan). The typology differentiates levels of palliative care development across the four hemispheres and in rich and poor settings. Although half of the world's countries have a palliative care service, far more are needed before such services are generally accessible worldwide. PMID:18243637
Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth
Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. PMID:25037291
Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J
Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services mak
Background In order to tackle the deficits in the provision of palliative home care, profound structural changes in the outpatient sector were introduced by law in Germany in 2007. The EPACS study was carried out (Research Accompanying the Establishment of Hospice and Palliative Care Services in Rhineland-Palatinate, Germany) to document the quality of inpatient and outpatient end-of-life care in Rhineland-Palatinate, Germany, before the implementation of these changes. With this article we focus on the study design and methods of the EPACS-Study. We further report first results regarding several aspects of outpatient end-of-life care. Methods The cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate that had died from May 25 until August 24 of the year 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey. Results The overall response proportion considering only those questionnaires that actually were delivered (n = 3833) was 36.0%. Factors influencing participation were age, sex, and marital status. 355 (25.8%) deceased persons had used professional home care in the four weeks prior to their death, but only very few persons had used a specialised palliative home care service (n = 30; 8.5%). There was a clear gap between the need for specialised outpatient care and the actual utilisation of these services. Conclusions Satisfaction with professional home care was relatively high, but physicians were rated less favourable than nurses. There were deficits especially with respect to physicians' communicative and supportive skills. Further analyses are necessary to provide more detailed information about quality of care in different care settings and for distinct groups. Predictors of good care, as well as obstacles to it, must be further investigated. In the long run, a follow-up survey must be conducted to compare quality of home care before and after the structural changes in Germany. PMID:20673326
... 20 50 100 miles Provider Name: Organization Type: Hospice Multi-Location Hospice Provider Palliative Care Provider or Sitemap Contact Us Privacy Informacion en Español Copyright National Hospice and Palliative Care Organization 1731 King Street, Suite ...
... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 180 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...
Identifying children who may have palliative care needs: A Spectrum of Children's Palliative Care Dr Lynda Brook October 2011 #12;Outline Development of the ACT/CH-UK Children's Palliative Care Minimum Dataset (MDS) The Children's Palliative Care Supporting Definitions Delphi Study The Spectrum
Fox, Hannah; Jackson, Kate
An estimated 1 million new cases of cancer occur each year in India, with over 80% presenting at the point at which the disease is incurable. Around 60% of the patients will already be in significant pain, and just under half will be experiencing excruciating, unbearable pain. With only a handful of outpatient palliative care clinics in Kolkata, few patients are able to access essential pain medication and palliative care services. This narrative includes five case studies exploring differing aspects of palliative care: pain management, the difficulties faced in accessing morphine, the importance of compassion in end-of-life care, and the psychological effects on families. They illustrate the degree of suffering some patients and families face, and the relatively simple measures that can be taken to alleviate this. For the current situation in India to improve, there needs to be better access to essential pain medications such as morphine, education of health care professionals and the public, as well as the implementation of government pain management and palliative care policies. PMID:26654418
Dhiliwal, Sunil R; Muckaden, Maryann
Background: Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. Materials and Methods: Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters. Results: Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. Conclusion: Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction. PMID:25709182
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
Background The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. Results A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. Conclusions Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care. PMID:24044631
Pritchard, Sheila; Cuvelier, Geoff; Harlos, Mike; Barr, Ronald
Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a larger workshop on AYA with cancer, was held in Toronto on March 11-13, 2010;117:-. Recommendations were as follows: Develop a specific AYA screening tool designed to detect increased anxiety or new symptoms and to initiate discussion about palliative or symptom care; Set Canadian standards for palliative care in AYA patients. These standards should be included in hospital accreditation; Involve the palliative/symptom care team early in the disease trajectory to help manage clinically important symptoms that may not be associated with imminent death; Establish specific AYA multidisciplinary palliative care teams throughout Canada that are flexible and can work in both pediatric and adult facilities, and are able to work in a "virtual" environment to support patients being cared for at home; Improve physical facilities in hospices and hospitals to meet the distinctive needs of terminally ill AYA patients; Enhance support for palliative care at home by: changing legislation to improve Compassionate Care Benefits and developing "virtual palliative care support teams". Adequate provision of AYA palliative care and symptom management services will likely confer notable benefits to AYA patients and their families, and is likely to be cost saving to the tax payer by avoiding prolonged hospitalization and promoting easier return to work for the families and caregivers. PMID:21523753
Gustin, Allen N; Aslakson, Rebecca A
Many seriously ill geriatric patients are at higher risk for perioperative morbidity and mortality, and incorporating proactive palliative care principles may be appropriate. Advanced care planning is a hallmark of palliative care in that it facilitates alignment of the goals of care between the patient and the health care team. When these goals conflict, perioperative dilemmas can occur. Anesthesiologists must overcome many cultural and religious barriers when managing the care of these patients. Palliative care is gaining ground in several perioperative populations where integration with certain patient groups has occurred. Geriatric anesthesiologists must be aware of how palliative care and hospice influence and enhance the care of elderly patients. PMID:26315640
Al-Shahri, Mohammad Zafir; Brown, Stuart; Ezzat, Adnan; Khatib, Oussama
The Eastern Mediterranean Region (EMR), with 22 countries and about half a billion people, has scarce palliative care services that are far from meeting the needs of the region. The authors of this paper believe that the resources and international influence of the World Health Organization could be combined with the excellent palliative care expertise of King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia to establish a collaborative initiative for promotion of palliative care services in the region. This proposal is based on the major components of professional training, development of regional guidelines, integration of palliative care into health plans and polices, and ensuring availability of essential medications. Investment in developing palliative care in the EMR would be expected to relieve the suffering of hundreds of thousands of patients and families in this part of the world. PMID:15646166
... whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative ... In short, you can expect the best possible quality of life. 6 ? Palliative care is provided by a team ...
Charlebois, Janie; Cyr, Claude
OBJECTIVES: To apply quality indicators for paediatric palliative care and evaluate performance in one service provision area. METHODS: After institutional review board approval, medical records were abstracted for well-defined and measurable quality indicators for children with chronic complex conditions (CCCs) between January 2006 and December 2011 (n=50) at a university medical centre. RESULTS: Of the 50 children with a CCC (mean age 64 months, 48% female), 39 (78%) died in hospital, 11 (22%) died at home and 13 (26%) were <1 month of age. In the final month of their life, 10 patients (20%) required an unplanned visit to the emergency department and seven (14%) were admitted. Only four patients (8%) were admitted for >14 days in their final month of life. Goals of care were addressed in a timely manner 60% of the time. An invasive procedure was performed in the final month of life in 27 (44%) patients. Bereavement follow-up was offered to 25 (50%) families. A palliative care consultant was involved with 17 (34%) patients. Palliative care was associated with less frequent invasive procedures in the final month of life and more frequent documentation of the preferred place of death. CONCLUSION: Performance on these particular quality indicators was unsatisfactory across a diverse group of children with CCCs, indicating important opportunities for improvement. Methods used to improve the quality of other aspects of paediatric care, including emphasis on efficient work systems, practical tools and interdisciplinary teamwork, should be used for ensuring delivery of high-quality palliative care. PMID:25914573
... be hard to think and talk about the type of care you want at the end of your life. However, discussing these subjects with your doctors and loved ones may help bring you peace of mind. You may have already discussed heart transplantation and ...
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. PMID:26637763
Downing, Julia; Powell, Richard A; Marston, Joan; Huwa, Cornelius; Chandra, Lynna; Garchakova, Anna; Harding, Richard
One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs-highlighting examples of best practice among service models in Malawi, Indonesia and Belarus-before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need. PMID:26369576
Love, Barbara; Cook, Audra
The Prince & Princess of Wales Hospice in Glasgow is committed to developing culturally competent, sensitive services to meet the needs of local ethnic minority communities. The clinical nurse specialist for widening access travelled to India, funded by a travel scholarship from the Florence Nightingale Foundation. The main rationale for this visit was to observe and compare palliative care practice in India in community, hospice and hospital settings with the current service provision by the hospice/hospital palliative care teams in Glasgow. A second focus was to study the cultural differences and potential challenges of providing palliative care to a diverse Indian population from multi-faith communities and different socio-economic classes. Throughout the visit the barriers to accessing palliative care services in India were observed as well as cultural norms that might impact on clinical practice in the UK. PMID:26500126
LeBlanc, Thomas W; El-Jawahri, Areej
Palliative care is a multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients with serious illness and their families. It emphasizes well-being at any point along the disease trajectory, regardless of prognosis. The term "palliative care" is often incorrectly used as a synonym for end-of-life care, or "hospice care". However, palliative care does not require a terminal diagnosis or proximity to death, a misconception that we will address in this article. Multiple randomized clinical trials demonstrate the many benefits of early integration of palliative care for patients with cancer, including reductions in symptom burden, improvements in quality-of-life, mood, and overall survival, as well as improved caregiver outcomes. Thus, early concurrent palliative care integrated with cancer-directed care has emerged as a standard-of-care practice for patients with cancer. However, patients with hematologic malignancies rarely utilize palliative care services, despite their many unmet palliative care needs, and are much less likely to use palliative care compared to patients with solid tumors. In this article, we will define "palliative care" and address some common misconceptions regarding its role as part of high-quality care for patients with cancer. We will then review the evidence supporting the integration of palliative care into comprehensive cancer care, discuss perceived barriers to palliative care in hematologic malignancies, and suggest opportunities and triggers for earlier and more frequent palliative care referral in this population. PMID:26637760
Pringle, Amanda; Finucane, Anne; Oxenham, David
Coordination of services used by palliative care patients across care contexts is essential in providing patient centred care. In Lothian, Edinburgh, a baseline audit in 2008 of patients known to all four specialist palliative care teams revealed only 49% had information available to out of hours (OOH) general practitioners (GPs). This highlighted the poor handover and sharing of information, which are essential for providing quality care for palliative patients in accordance with their wishes, and for reducing inappropriate hospital admissions. A number of quality improvement measures have been introduced, some nationally in Scotland, such as the roll out of Electronic Palliative Care Summaries (ePCS) – an electronic register containing up to date information including patient wishes and latest treatment decisions. In addition there have been changes to the GP Quality Outcomes Framework encouraging the use of electronic records. Locally, at Marie Curie Hospice, drivers were implemented including hosting GP education evenings promoting ePCS use, alteration of hospice discharge letter format to complement ePCS completion, in addition to offering specialist nurse support and presence at GP practice palliative care register meetings. A re-audit in 2012 revealed that 75% of specialist palliative care patients had electronic information available to OOH services, and in 2013, 71% of patients. This represents a significant improvement in electronic information sharing across care contexts. Building on the progress of ePCS, a new Electronic Key Information Summary is currently being rolled out across Scotland. This quality improvement report reflects on the positive measures taken to address the important clinical need of effective electronic handover for specialist palliative care patients in Lothian. Furthermore, it highlights the ongoing requirement to continue to improve the quality and availability of electronically shared information for every patient known to palliative care services across care contexts.
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
Morrissey, Mary Beth; Herr, Keela; Levine, Carol
A primary aim of federal aging and health policy must be promoting innovations in palliative care systems, services, and supports that improve the experience of growing old in America. Older adults must contend today with increasing burden over the life course often as the result of life-limiting chronic pain and chronic illnesses as well as social and economic factors beyond their control. These burdens are frequently shared with unpaid family caregivers who provide significant uncompensated medical care and social support to their loved ones. Enjoyment of the highest attainable standard of physical and mental health, recognized as a fundamental human right under international law, remains a goal for all older adults and encompasses the right to palliative care. For many older Americans, especially vulnerable subgroups who face health and pain disparities, however, this goal remains elusive. A public health strategy for implementing palliative care policy interventions will help to build age-friendly environments, assure the availability and accessibility of palliative systems of care, essential medicines, and an adequate generalist-level workforce, and sustain diffusion of innovation across all levels of health and social provision. The 2015 White House Conference on Aging must make these realignments a policy priority in order to foster social and economic development for all older Americans. PMID:26035600
Mitty, Ethel L
Principles of upstream palliative care can guide the planning, programs, and services associated with aging in place in assisted living residences (ALRs). Frail older adults who do not need a nursing home level of care are choosing to live-and die-in ALRs. This article describes the context of assisted living, resident characteristics, key indicators of palliative care, barriers to end-of-life care, and the role, responsibilities, and potential for professional nursing in assisted living. Stakeholder concerns about staff knowledge and skills in care of the elderly, medication management, the risks associated with residential care, and nursing delegation are discussed. PMID:15197374
Chao, Co-Shi Chantal
Hospice palliative care is an approach to healthcare that integrates high technology and highly humanized care. Service, education, and policymaking are the three critical areas of focus in the development of this specialty of care. Under hospice palliative care, holistic, high quality services covering in-patient care, homecare, and shared care are provided for terminally ill patients and their families. Healthcare team members must be taught not only knowledge but also skills and attitudes that reflect their responsibilities and level of competence. General public education is important also. Regulations and relevant policies have been implemented by Department of Health (DOH) since 1995. The Natural Death Act was legislated in 2000. Members of Healthcare team concerned regarding the proper development of hospice palliative care in Taiwan have organized to, "do the right things and do things right." The future vision of hospice palliative care embraces: 1. Expanding services to other life threatening illness such as terminal liver, renal, respiratory and heart diseases; 2. Securing appropriate DOH supervision and funds; 3. Developing a care model appropriate to the needs of Taiwan's culture; 4. Expanding the limits of service models; 5. Integrating services and enhancing expertise among those charged with delivering services, conducting research, and education; 6. Integration into the long term care system and enhancing quality. PMID:19221994
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.
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. PMID:23899972
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. PMID:25920063
Kaasa, Stein; Jordhøy, Marit S; Haugen, Dagny Faksvåg
Palliative care (PC) in Norway has evolved in close cooperation between the health authorities and health care professionals. A number of official reports and national plans have promoted a stepwise development of PC services on all levels of the public health care system: tertiary care, with palliative medicine units in university hospitals coupled with research groups and regional Units of Service Development; secondary care, with hospital-based consult teams, inpatient units, and outpatient clinics; and primary care, with home care and designated PC units in nursing homes. The regional Units of Service Development are specifically assigned to research, education, and audit, as well as to development and coordination of services. PC has been closely linked to cancer care and included in the national cancer strategy. Starting the organizational development at the tertiary level has been crucial for educational and audit purposes, and has provided an excellent basis for networking. The Norwegian strategy for PC has resulted in rapidly increasing quantity and quality of services, but several challenges are still pending. Further improvement of the financial reimbursement system is needed, in particular concerning the funding for PC units in nursing homes. There are also challenges related to expertise and training, including establishing a program for palliative nursing and getting palliative medicine recognized as a medical specialty. PMID:17482054
Zeinah, Ghaith F Abu; Al-Kindi, Sadeer G; Hassan, Azza Adel
Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country. PMID:22495789
Robinson, Carole A.; Pesut, Barbara; Bottorff, Joan L.
Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.…
McNeil, Ryan; Dilley, Laura B; Guirguis-Younger, Manal; Hwang, Stephen W; Small, Will
Introduction Improvements in the availability and effectiveness of highly active antiretroviral therapy (HAART) have prolonged the lives of people living with HIV/AIDS. However, mortality rates have remained high among populations that encounter barriers to accessing and adhering to HAART, notably people who use drugs. This population consequently has a high burden of illness and complex palliative and supportive care needs, but is often unable to access these services due to anti-drug policies and discrimination. In Vancouver, Canada, the Dr. Peter Centre (DPC), which operates a 24-bed residential HIV/AIDS care facility, has sought to improve access to palliative and supportive care services by adopting a comprehensive harm reduction strategy, including supervised injection services. We undertook this study to explore how the integration of comprehensive harm reduction services into this setting shapes access to and engagement with care. Methods Qualitative interviews were conducted with 13 DPC residents between November 2010 and August 2011. Interviews made use of a semistructured interview guide which facilitated discussion regarding how the DPC Residence's model of care (a) shaped healthcare access, (b) influenced healthcare interactions and (c) impacted drug use practices and overall health. Interview transcripts were analysed thematically. Results Participant accounts highlight how the harm reduction policy altered the structural-environmental context of healthcare services and thus mediated access to palliative and supportive care services. Furthermore, this approach fostered an atmosphere in which drug use could be discussed without the risk of punitive action, and thus increased openness between residents and staff. Finally, participants reported that the environmental supports provided by the DPC Residence decreased drug-related risks and improved health outcomes, including HAART adherence and survival. Conclusions This study highlights how adopting comprehensive harm reduction services can serve to improve access and equity in palliative and supportive care for drug-using populations. PMID:24629844
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. PMID:25841689
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. PMID:24761156
Selman, L E; Williams, J; Simms, V
To inform service provision and future research, we evaluated two complementary therapy services: yoga classes and dance therapy [The Lebed Method (TLM)]. Both were run as 6-week group courses. Patients completed the Measure Yourself Concerns and Wellbeing questionnaire pre- and post-course. Mean change over time was calculated for patient-nominated concern and well-being scores. Qualitative data regarding factors affecting health other than the therapy and benefits of the service were analysed using content analysis. Eighteen patients participated (mean age 63.8 years; 16 female; 14 cancer diagnoses); 10 were doing yoga, five TLM, and three both yoga and TLM; 14 completed more than one assessed course. Patients' most prevalent concerns were: mobility/fitness (n= 20), breathing problems (n= 20), arm, shoulder and neck problems (n= 18), difficulty relaxing (n= 8), back/postural problems (n= 8), fear/anxiety (n= 5). Factors affecting patients' health other than the therapy were prevalent and predominantly negative (e.g. treatment side effects). Patients reported psycho-spiritual, physical and social benefits. Concern scores improved significantly (P < 0.001) for both therapies; improved well-being was clinically significant for yoga. Evaluations of group complementary therapy services are feasible, can be conducted effectively and have implications for future research. Yoga and TLM may be of benefit in this population. PMID:21880079
Low, J A; Pang, W S
There has been a gradual shift in the attitude of the medical community as well as the lay public towards greater acceptance of euthanasia as an option for care of the terminally ill and dying. There have also been calls by certain groups to actually legalize voluntary euthanasia and physician-assisted suicide for patients who meet certain conditions, some of which are as follows: that the patient be of a sound mind, suffering from an incurable or terminal illness, experiencing unbearable suffering and uncontrollable pain. The rationale for legalizing euthanasia is based on the principle of the patient's right of self-determination and the duty of doctors to relieve pain and suffering at all times. A few within the medical community quickly saw certain similarities in terms of goals and aims between euthanasia and palliative care and, thus, proposed that euthanasia be an option or choice for difficult palliative care cases. Some even went as far as to suggest that euthanasia and palliative care be part of the continuum of care for terminally ill patients. When palliative medicine fails to fully control pain and suffering for the patient, euthanasia can be the logical next step in the continuum of care. This article seeks to discuss why the rationale for legalizing euthanasia is flawed, why euthanasia goes against the fundamental principles of Medicine in general and why it is incompatible with the practice of palliative medicine. PMID:10489499
Managing pain effectively is one of the biggest challenges in medicine, let alone when dealing with the dying patient and his family. For palliative care specialists this is a daily challenge. However, ''To cure when possible, to give comfort always'' is an empty credo if physicians don't use every weapon in the medical arsenal to relieve the suffering caused by chronic pain. It's of course the opioids: morphine, heroin, their synthetic derivatives and other narcotics, a class of medications that conjure up visions of drug addiction and narcotic squads. To say that opioids are stigmatised by such allusions is putting it mildly. An unhealthy proportion of doctors and patients alike are afraid to have anything to do with them, even in when facing their final stages of life. This is particularly so in the Mediterranean society. It is here in Italy that an effort must be made to educate both physicians and the general public, an arduous task to change a long standing belief which requires a quick cultural turn around. Those who refuse opioids because they are afraid of addiction, and the doctors who refuse to prescribe them out of fear or pure unwillingness to address an apprehensive attitude on behalf of his patient, need to be better informed. Most misconceptions about opioids have to do with terminology, because words like ''morphine, addiction, dependency'' and ''tolerance'' mean entirely different things in popular and medical parlance. Add to this the perceptions and attitudes the patient can have with this terminology which then can have a profound effect on the success or failure of a pain control programme. In fact, most people think that medication such as morphine are only for people who are dying and as a consequence is synonymous with death itself. Is this why Italian physicians are not prescribing morphine even though great efforts have been made recently by the Health Ministry to facilitate prescribing laws and costs? It is worthy of serious consideration. Another important issue faced daily by palliative care physicians is the broad number of chronic conditions which could make use of opioids. Severe cancer pain is the most obvious example of an appropriate use of opioids, but hardly the only one. The North American Chronic Pain Association of Canada (NACPAC) advocates the use of opioids for a wide range of conditions causing severe chronic pain, including lower back pain, inflammatory bowel disease, migraines, AIDS, multiple sclerosis and arthritis. Concerns regarding under treatment of chronic pain have captured the attention of patient advocacy groups, policy makers and scientific organisations. Misconceptions of opioid laws, negative social stigma and lack of valid prescribing alternatives to overcome this, together with paucity of formal provider education confound the issue. Much education needs to be done before opioids will be seen as a safe and reasonable treatment for chronic pain here in Italy. PMID:16012417
Reid, Lorna; Snowden, Austyn; Kydd, Angela
This paper suggests that there is an imbalance between the ideal and the actual palliative care provision for some older people living and dying in care homes in Scotland. Successive studies demonstrate that care home residents are increasingly frail and disabled. Many experience challenging physical and psychosocial symptoms which could benefit from a palliative approach to alleviate suffering and promote comfort. However, palliative needs for people with non-malignant conditions, such as dementia, can be complex, and not easily identified or managed. A range of challenging factors currently impact palliative care provision for care home residents in Scotland including: the insufficiency of robust NHS healthcare support, the skill mix of the care home workforce, and the promotion of palliative tools as the primary means of improving the quality of palliative care in non-specialist settings. Issues highlighted in this paper give cause for concern on a number of levels, particularly as the demand for palliative care in care homes is likely to increase in the near future. Therefore, sustained collaborative effort from leaders in the health, social and care home sectors is recommended if practical solutions are to be found for this vulnerable population. PMID:22240515
The definition of palliative care is the cornerstone of a medical subspecialty that plays a particular role for all who need it, for all who practice it, and increasingly for those who try to understand it. The difficulties around the definition and terminology arise from problems in separating it from other concepts such as supportive care, constructs such as “palliative care is only about dying”, or, in children, the rather vague use of terms like life-threatening and life-limiting diseases. These weaknesses have been recognized and important steps have been taken. This review discusses current definitions as well as efforts to overcome their weaknesses and make the term palliative care—for both children and adults—more intelligible. PMID:25278760
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. PMID:26145138
Background Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. PMID:23937891
Mahon, Margaret M; Sorrell, Jeanne M
The task of aligning the philosophical and clinical perspectives on ethics is a challenging one. Clinical practice informs philosophy, not merely by supplying cases, but through shaping and testing philosophical concepts in the reality of the clinical world. In this paper we explore several aspects of the relationship between the philosophical and the clinical within a framework of palliative care for people living with Alzheimer's disease. We suggest that health professionals have a moral obligation to question previous assumptions concerning the quality of life among people with Alzheimer's, and to address the question: does the concept of palliative care properly embrace people with severe dementia? We propose an ethic of palliative care for people with Alzheimer's that is based, not on the traditionally understood principle of autonomy, but on the need to listen to those living with the disease, acknowledging their profound loss of cognitive abilities, with a focus on preventing and relieving suffering, and improving the individual's quality of life. PMID:18336708
Chmura, Joanne Q
This article describes adapting the dedicated education unit model to the hospice/palliative care setting. The purpose of this qualitative study was to demonstrate how this unique academic service model helps to address the void that exists in hospice and palliative care in the clinical education of prelicensure nursing students. PMID:26154419
The palliative care day hospital is still underdeveloped in France, unlike in Anglo-Saxon countries. Its main mission is to help improve the quality of life at home of the patient suffering from a serious and progressive disease. It offers an inter-disciplinary and global approach in which the nurse's role is quite specific. PMID:26567073
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. PMID:25739492
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. PMID:22668994
Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia’s health system. PMID:24670065
The aim of this paper is to encourage critical discussion of an individual's understanding of palliative care and compare this with a health care professional's understanding of palliative care. In doing this, the paper serves to illustrate the importance of words attached to services - so with palliative care - are we providing good care, or scaring the patients? The paper touches on the historical origins of palliative care as an adjunct of oncology, to a specialism in its own right and now as an integral part of all care - in a 'generalist palliative care nurse'. However, it is unlikely that patients and their families are aware of such developments and will see palliative care services as immediate end of life care. It is argued that whatever your thoughts on the use of the term 'palliative care', it is important to understand what has resonance for patients. You may not agree with this paper, and I do not expect all of you to agree, but I hope it has made you think. For those who strongly disagree, take heart from a quote by Frank A. Clark (1860-1936) 'We find comfort among those who agree with us - growth among those who don't'. PMID:26106012
Dumanovsky, Tamara; Augustin, Rachel; Rogers, Maggie; Lettang, Katrina; Meier, Diane E.
Abstract Background: Palliative care is expanding rapidly in the United States. Objective: To examine variation in access to hospital palliative care. Methods: Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. Results: Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. Conclusions: This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership. PMID:26417923
Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.
Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family. PMID:22628412
McRae, S.; Caty, S.; Nelder, M.; Picard, L.
OBJECTIVE: To describe family caregivers' experiences with palliative care services in rural communities. DESIGN: Qualitative study. SETTING: Manitoulin Island, Ont. PARTICIPANTS: Thirteen family caregivers of 12 deceased patients who had received palliative care services. METHOD: Twenty-five family caregivers were recruited by mail and local newspaper. Eight were excluded because they lived off the Island or were too recently bereaved; one declined an interview; and three were excluded by researchers. Initial contact was by telephone; those retained (13 people) were interviewed at home. Interviews were conducted by the same researcher using a semistructured interview guide. All interviews were audiotaped and transcribed, and content was analyzed. MAIN FINDINGS: Three interwoven themes were identified: access to services, quality of services, and support and caring. Hospital and community-based services were accessed with ease at the local level; difficulties were noted when accessing services in tertiary care centres. Participants were generally grateful for and pleased with services received. Two areas of concern raised by participants were communication and pain and symptom control. Participants suggested to the Ministry of Health ways to improve rural palliative care services. More public funding for in-home palliative care services was identified as a priority. CONCLUSION: Participants thought good services and supportive care at the local level made up for difficulties in accessing and using palliative services in tertiary care centres. Community spirit and culture were seen as making situations more bearable. PMID:10907569
Hänninen, Juha; Hamunen, Katri; Laakkonen, Marja-Liisa; Laukkala, Tanja; Lehto, Juho; Matila, Ari; Rahko, Eeva; Saarto, Tiina; Tohmo, Harri; Vuorinen, Eero
The updated Current Care Guideline focuses on medical symptom treatment when curative treatment is no longer possible. Palliative care should be available to all dying patients at all health care levels. Pain should be treated prophylactically. Opioids are effective in cancer pain and should be chosen for moderate or severe pain in line with the WHO pain ladder. Treatment options for symptoms which call for acute interventions, such as intracranial hypertension, and options for dyspnoea, delirium, gastro-intestinal symptoms, ascites, dehydration and end-of-life treatment of elderly and demented patients are described. PMID:23484354
Grant, Liz; Downing, Julia; Namukwaya, Elizabeth; Leng, Mhoira; Murray, Scott A
There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead. PMID:24653220
The association of doctors of Shizuoka City started a conference (S-NET) for cancer diagnosis and treatment in order to enhance a home palliative care for terminal cancer patients. At the same time, we introduced a system called "home palliative care shift" for inpatients. However, we felt that an intervention was necessary at the earliest stage of home palliative care due primarily to difficulties our home palliative team faced in its intervention for inpatients to "home palliative care shift." The outpatient palliative conference started to begin centering in the outpatient chemotherapy room because we thought it was important to have a seamless transition for terminal cancer patients. The primary contents of the conference were mostly centered on how to support the process of decision makings when the cancer treatment for a patient changes and how to choose a location for the patient to have a right medical treatment. The performance status (PS) when intervened was 2.3. The 5 patients who had died spent the final moment at their preferred medical treatment centers. Through the participation of multiple different back ground professionals at the time, the patients were treated well with better understandings. Furthermore, by sharing the patient's objective and information, we could enhance some relationship with the patient as well as going along with patient intensions what they want us to do for them at the final moment of their life. We thought that the system that verifies patient's intentions at the earliest stage of home palliative care was clearly needed most. PMID:20443305
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 families face challenges after discharge from intensive care. Conclusions Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures. PMID:25167087
Desai, Mehul J; Kim, Ann; Fall, Patrick C; Wang, Dajie
Many developments have occurred in prevention and treatment of cancer, but death from this disease is still common. Of the 58 million people who died worldwide in 2005, 7.6 million died of cancer (http://www.who.int/cancer/en/). For dying patients, it is most important to improve quality of life and relieve suffering. Palliative care is the active total care of patients whose medical condition is not responsive to curative treatment. It encompasses all therapeutic modalities designed to enhance quality of life rather than eliminating disease. Each patient's definition of quality of life is unique, and therefore, it is important to treat each as an individual and holistically. Controlling cancer-related symptoms can ameliorate the limited remaining time patients have with family and friends. Palliative chemotherapy, rehabilitation, radiation therapy, surgery, and interventional pain management can help to achieve this objective. In this online update of an article published in a 2005 series on pain management, a case presentation describes the typical course of a patient with cancer who receives palliative care to reduce pain. PMID:18165379
Brown, Allyson; Clark, Jonna D
Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service. PMID:26358425
Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres--for instance the fear and helplessness of caregivers--remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning. PMID:7510803
Hackamiloglu, Ezgi; Utku, Ezgi Simsek; Cukurova, Zafer; Keskinkilic, Bekir; Topcu, Ibrahim; Gultekin, Murat; Silbermann, Michael
The Middle East has been struggling with basic issues of cancer care, and in specific, palliative care, at the primary health care level in the communities. The Middle East Cancer Consortium designated this issue as the highest priority of its activities in the region. Following basic and advanced courses and national and international workshops, local governments recognized the essentiality of developing palliative care services in their respective countries. As the result of these training activities, in 2010, the Ministry of Health in Turkey initiated a novel program whereby population-based and home-based palliative care teams were developed throughout the country, including peripheral regions in the countries where appropriate care was not available. This initiative led to a dramatic increase in the number of cancer patients receiving palliative care at their homes. The Turkish initiative can serve as a model to other countries in the Middle East and beyond it. PMID:26598953
Dementia is a progressive life limiting condition with increasing prevalence and complex needs. Palliative care needs of patients with dementia are often poorly addressed; symptoms such as pain are under treated while these patients are over subjected to burdensome interventions. Research into palliative care in dementia remains limited but recent developments together with national guidelines and policies set foundations for improving the delivery of palliative care to this group of the population. PMID:17551065
Dementia is a progressive life limiting condition with increasing prevalence and complex needs. Palliative care needs of patients with dementia are often poorly addressed; symptoms such as pain are under treated while these patients are over subjected to burdensome interventions. Research into palliative care in dementia remains limited but recent developments together with national guidelines and policies set foundations for improving the delivery of palliative care to this group of the population. PMID:17551065
Kelsall, Kay; Brennan, Ebony; Cole, Teresa
This paper presents the development and implementation of a recurrently funded, rolling, 6-month palliative care secondment programme for NHS community staff nurses based in a rural health economy in Southwest England. The programme is a key tool in a wider development plan for improving access to, and the quality of, palliative and end-of-life care for a dispersed rural population. This is part of a much bigger programme of integration to meet the shared challenges of service capacity, equity, and sustainability that are presented by the geographical and demographical profile of the locality. The 'bigger picture' is defined and set in the context of the national drive and evidence base for integration in order to explain the reasons behind the secondment programme. This is followed by outlining the iterative process of design and implementation--the 'what?' and 'how?'--and key learning points to date are shared. PMID:26252232
Mahin-Babaei, Fariba; Hilal, Jamal; Hughes, Julian C
Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia. PMID:26421475
Bétrémieux, P; Gold, F; Parat, S; Caeymaex, L; Danan, C; De Dreuzy, P; Vernier, D; Viallard, M-L; Kuhn, P
In France, the law dated 22 April 2005 required that all practitioners offer palliative care to patients as an alternative to unreasonable obstinacy. The practical development of palliative care during the neonatal period is not easy, even though obstetricians and neonatologists have always been aware of the ethical necessity of comfort in the dying newborn. The decision leading to palliative care begins with the recognition of patent or potential unreasonable obstinacy, followed by withdrawing treatment and technical support, and finally a palliative care plan is drawn up with the medical team and the parents. PMID:20206482
Hearn, J.; Higginson, I. J.
Objectives - To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist palliative care settings throughout the UK. Design - A systematic literature review of measures appropriate for use in palliative care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to palliative care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. Setting - Eight centres in England and Scotland providing palliative care, including inpatient care, outpatient care, day care, home care, and primary care. Patients - A total of 450 patients entered care during the study period. Staff collected data routinely on patients in care long enough to be assessed (n=337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. Main measures - The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. Results - The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbach's alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. Conclusion - The POS has acceptable validity and reliability. It can be used to assess prospectively palliative care for patients with advanced cancer. PMID:10847883
The benefits of early intervention on the part of a palliative care network are proven. Assisting both patients and their family, the aim is to support them through every stage of the disease. This article presents the example of the care provided by the NEPALE 91 palliative care network to a patient suffering from amyotrophic lateral sclerosis. PMID:23477084
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
Formica, Marco; Marazzi, Federico; Tamagnone, Michela; Falconi, Daniela; Marengo, Marita; Tattoli, Fabio; Gherzi, Maurizio; Serra, Ilaria; De Prisco, Ornella; Gristina, Giuseppe
Nowadays the choice to start with a renal replacement therapy (or its withdrawal once begun) is a critical issue leading to review the paradigm of constantly treating terminal uremia by means of dialysis technologies, without caring for effective prognosis nor for patients preferences, in a more affordable physician-patient relationship. Furthermore dialysis patients mean age is increasing and such population bears the burden of comorbidities that seriously affect survival and quality of life. In any case, dialysis withdrawing does not mean neglecting the patient: the start, or continuation of a very low protein diet program may represent a reasonable alternative, not only for uremic symptoms control but also providing a slowing of disease progression (at least postponing further the start of renal replacement therapy). Basically, in our opinion, the decision to start dialysis in an eligible patient, mainly in the elderly or frails, it should be driven by an adequate balance among all the factors. These factors play a role not only concerning survival, but also in life quality issues and patients preferences. Thus, we argue that ethical issues must be taken into account as well as compelling clinical factors which usually nephrologists refer to. To pursue this goal, it could be useful to set up specific educational pathways addressed to physicians, nurses and technicians of renal units. It also could be instrumental in developing new strategies to manage end stage renal failure, considering not only hospital facilities,but also nursing and patients homes. Incoming guidelines could help nephrologists in improving their behaviors to face these new issues. PMID:24777917
Yao, Yingwei; Stifter, Janet; Ezenwa, Miriam O.; Lodhi, Muhammad; Khokhar, Ashfaq; Ansari, Rashid; Keenan, Gail M.; Wilkie, Diana J.
Objective Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental costs for dying care. Our aim was to identify changes in the plans of care that represented infomarkers, which signaled the transition of care goals from non-palliative care goals to those consistent with palliative care. Methods Using an existing electronic health record database generated during a two-year, longitudinal study of 9 diverse medical-surgical units from 4 Midwest hospitals and a known group approach, we evaluated the patient care episodes for 901 patients who died (mean age=74.5±14.6 years). We used ANOVA and Tukey’s post-hoc tests to compare patient groups. Results We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of non-palliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n=507); infomarkers added on the admission plan (n=194); infomarkers added on a post admission plan (minor transitions, n=109), and infomarkers added and non-palliative care diagnoses removed on a post admission plan (major transition, n=91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients. Significance of Results EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories for to conduct big data research, comparative effectiveness studies, and health services research. PMID:25711431
Interest in the use of cannabinoids in a clinical setting is gradually increasing, particularly in patients where more conventional treatments have failed. They have been reported as offering perceived benefits in a wide range of conditions, but the major interest at present is centred on their place in pain management and in the palliation of symptoms secondary to terminal cancer and neurological disease. The potential benefits include symptomatic relief for patients suffering from intractable neuropathic pain, anorexia, anxiety and muscle spasm. There is clear consensus that cannibinoids should not be used as a first-line monotherapy, but should be considered as valuable adjuvants to more commonly indicated therapeutic options in the management of palliative care patients. Scientific evidence documenting the benefits of the canibinoids nabilone and sativex is accumulating, but needs to be evaluated carefully in the light of the paucity of available data. Both drugs are usually used under the guidance of specialist units. Nabilone and Sativex are now controlled drugs, and are frequently used outside of their licensed indication (control of chemotherapy-induced nausea and vomiting) and hence particular care needs to be taken in evaluating the rational for their use. Sativex has been recently licenced for use in the management of patients with multiple sclerosis. PMID:20972379
Blaney, Paddie; Mulholland, Cathleen; Molloy, Anne
: "During Phase 1 of the Let's Talk About patient experience survey, 367 responses were submitted by people who use or care (or cared) for someone with a serious or progressive life-limiting condition from across the Republic of Ireland and Northern Ireland. The overall purpose of the Let's Talk About initiative is to gain a better understanding the issues that matter most to individuals so that the design and delivery of services and supports can be improved and tailored accordingly. The method collects individual narratives about a high impact good or bad experience of palliative care services which can be accessed at a micro level combined with a meta-analysis of a large quantity of qualitative information. Input from users and carers, and specialist and general palliative care professional's was reflected in the design of the survey tool, during the engagement phase and with the interpretation of the dataset. This is a novel approach to identifying the lived experience of users in receipt of palliative care which directs focus to the vital aspects of psychosocial wellbeing within the palliative care experience. The results have informed initial strategic recommendations aimed at a variety of key stakeholders including policy makers and commissioners, palliative care providers and agencies with a palliative care interest. Phase II of the survey will complete May 2015 www.letstalk-about.org" Report to reference: Let's Talk About Survey Report: Phase 1 http://aiihpc.org/policy-practice/141/phase-i-report/. PMID:25960454
Mahtani, Ramona; Kurahashi, Allison M.; Buchman, Sandy; Webster, Fiona; Husain, Amna; Goldman, Russell
Objective To explore educational factors that influence family medicine residents’ (FMRs’) intentions to offer palliative care and palliative care home visits to patients. Design Qualitative descriptive study. Setting A Canadian, urban, specialized palliative care centre. Participants First-year (n = 9) and second-year (n = 6) FMRs. Methods Semistructured interviews were conducted with FMRs following a 4-week palliative care rotation. Questions focused on participant experiences during the rotation and perceptions about their roles as family physicians in the delivery of palliative care and home visits. Participant responses were analyzed to summarize and interpret patterns related to their educational experience during their rotation. Main findings Four interrelated themes were identified that described this experience: foundational skill development owing to training in a specialized setting; additional need for education and support; unaddressed gaps in pragmatic skills; and uncertainty about family physicians’ role in palliative care. Conclusion Residents described experiences that both supported and inadvertently discouraged them from considering future engagement in palliative care. Reassuringly, residents were also able to underscore opportunities for improvement in palliative care education.
Wunsch, Hannah; Reyfman, Paul A.; Narain, Wazim R.; Blinderman, Craig D.; Schluger, Neil W.; Reid, M. Cary; Maurer, Mathew S.; Goldstein, Nathan; Lederer, David J.; Bach, Peter
Rationale: Adults with chronic critical illness (tracheostomy after ? 10 d of mechanical ventilation) have a high burden of palliative needs, but little is known about the actual use and potential need of palliative care services for the larger population of older intensive care unit (ICU) survivors discharged to post–acute care facilities. Objectives: To determine whether older ICU survivors discharged to post–acute care facilities have potentially unmet palliative care needs. Methods: We examined electronic records from a 1-year cohort of 228 consecutive adults ? 65 years of age who had their first medical-ICU admission in 2009 at a single tertiary-care medical center and survived to discharge to a post–acute care facility (excluding hospice). Use of palliative care services was defined as having received a palliative care consultation. Potential palliative care needs were defined as patient characteristics suggestive of physical or psychological symptom distress or anticipated poor prognosis. We examined the prevalence of potential palliative needs and 6-month mortality. Measurements and Main Results: The median age was 78 years (interquartile range, 71–84 yr), and 54% received mechanical ventilation for a median of 7 days (interquartile range, 3–16 d). Six subjects (2.6%) received a palliative care consultation during the hospitalization. However, 88% had at least one potential palliative care need; 22% had chronic wounds, 37% were discharged on supplemental oxygen, 17% received chaplaincy services, 23% preferred to not be resuscitated, and 8% were designated “comfort care.” The 6-month mortality was 40%. Conclusions: Older ICU survivors from a single center who required postacute facility care had a high burden of palliative care needs and a high 6-month mortality. The in-hospital postcritical acute care period should be targeted for palliative care assessment and intervention. PMID:23987743
Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S
Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia. PMID:20606855
Hwee, Jeremiah; Klinger, Christopher; Jembere, Nathaniel; Seow, Hsien; Pereira, José
Background: Little is known about the physician workforce providing palliative care in Canada, and in Ontario specifically. We developed an algorithm to identify palliative care physicians using administrative claims data and validated it against a reference sample. We then applied the algorithm to all general practitioners/family physicians (GP/FPs) in the province of Ontario to describe and quantify those identified by the algorithm. Methods: W e reviewed Ontario Health Insurance Plan claims from Jan. 1, 2008, to Dec. 31, 2011, to determine each physician’s proportion of claims that were for palliative care. We empirically selected a data-driven cut-off, whereby physicians whose proportion of palliative care claims was above the threshold were defined as palliative care physicians. We validated the cut-off against a reference sample of physicians who self-identified as providing mostly palliative care in a study-specific survey. We then applied this algorithm to all GP/FPs in the province. Results: We empirically selected 10% as the cut-off for the proportion of palliative care claims. This threshold had exceptional specificity and positive predictive value (97.8% and 90.5%, respectively) and adequate sensitivity (76.0%) when compared with the reference sample (n = 118). When applied to all GP/FPs in the province, the algorithm identified 276 practising mostly palliative care. Of these, 135 (48.9%) were women, 265 (96.0%) practised in urban locations, and 145 (52.5%) worked part time. Interpretation: Our algorithm readily identified and quantified the workforce of palliative care physicians in Ontario. Such a tool has numerous applications for both health service planners and researchers. PMID:26442228
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
St-Laurent-Gagnon, Thérèse; Carnevale, Franco A; Duval, Michel
The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semistructured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term "palliative care". Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children. PMID:18459594
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. PMID:24907123
Albizu-Rivera, Alexandra; Portman, Diane G; Thirlwell, Sarah; Codada, Shirley N; Donovan, Kristine A
Increasingly, evidence suggests the integration of palliative care (PC) with standard oncologic care can yield substantial benefits. As part of an effort to improve the PC of cancer patients, the National Comprehensive Cancer Network (NCCN) has developed clinical practice guidelines for PC that promote access to quality, evidence-based PC. This study sought to characterize current implementation of the guidelines by NCCN member institutions. Institutional representatives appointed to the NCCN Palliative Care Guidelines Panel were asked to complete an online survey in the spring of 2014. The survey focused on availability of PC services, screening and referral practices for PC, PC education, and quality improvement programs. The survey was completed by representatives from 21 of 25 NCCN member institutions (84 %). A majority routinely provides PC services via interdisciplinary teams; 52 % routinely inform patients of the availability, elements, and benefits of PC. The guidelines are most often used to guide clinical practice; only 10 % reported using the guidelines to formally screen for PC needs and/or make referrals to PC specialists. Among the 62 % of institutions that screen any patients using any available criteria, when a patient screens positive for PC needs, a referral to a PC specialist is made less than half the time. Implementation of PC Guidelines is incomplete and various aspects of the guidelines, such as the recommendation to screen all patients for PC needs, are applied inconsistently. Despite this, most institutions provide PC services in a manner consistent with the guidelines. Greater implementation of the guidelines' recommendations is needed. PMID:26227917
... HUMAN SERVICES National Institutes of Health Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey SUMMARY: Under the provisions of Section 3507(a)(1)(D) of.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey, ] 0925-New--National Institute...
Background Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care. Methods Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians. Results The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%). Conclusions Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and communication skills was seen as an important prerequisite for the engagement in paediatric palliative home care. A local network of specialist support on site and a 24/7 on-call service are necessary in order to facilitate the implementation of basic palliative care by paediatricians in their own practice. PMID:20525318
Dempsey, Laura; Dowling, Maura; Larkin, Philip; Murphy, Kathy
An estimated 33.9 million people are living with dementia worldwide. The overall estimated median survival time from onset of dementia to death is 4.1 years for men and 4.6 years for women, with longer survival times in those with early-onset dementia. Much has been discussed about the needs of this vulnerable group of people particularly in terms of their health-care and end-of-life care (EoLC) needs. However, the literature suggests that people with end-stage dementia are still not receiving adequate or appropriate EoLC. Difficulty diagnosing dementia, a stigma surrounding the disease, lack of education of the dementia disease process and the ability to identify complications encountered at end-stage dementia by health-care providers, families and carers are some of the factors preventing those with dementia receiving effective EoLC. Great strides have been made to improve dementia palliative care; however, this cohort of patients still receive fewer referrals to appropriate palliative care services than other terminally ill patients. PMID:25815761
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. PMID:8754994
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. PMID:17700942
Meo, Nicholas; Morrison, R. Sean
Abstract Objectives To characterize the level of formal training and perceived educational needs in palliative care of emergency medicine (EM) residents. Methods This descriptive study used a 16-question survey administered at weekly resident didactic sessions in 2008 to EM residency programs in New York City. Survey items asked residents to: (1) respond to Likert-scaled statements about the role of palliative care in the emergency department (ED); (2) quantify their level of formal training and personal comfort in symptom management, discussion of bad news and prognosis, legal issues, and withdrawing/withholding therapy; and (3) express their interest in future palliative care training. Results Of 228 total residents, 159 (70%) completed the survey. Of those surveyed, 50% completed some palliative care training before residency; 71.1% agreed or strongly agreed that palliative care was an important competence for an EM physician. However, only 24.3% reported having a “clear idea of the role of palliative care in EM.” The highest self-reported level of formal training was in the area of advanced directives or legal issues at the end of life; the lowest levels were in areas of patient management at the end of life. The highest level of self-reported comfort was in giving bad news and the lowest was in withholding/withdrawing therapy. A slight majority of residents (54%) showed positive interest in receiving future training in palliative care. Conclusions New York City EM residents reported palliative care as an important competency for emergency medicine physicians, yet also reported low levels of formal training in palliative care. The majority of residents surveyed favored additional training. PMID:21291326
Grudzen, Corita R.; Richardson, Lynne D.; Hopper, Susan S.; Ortiz, Joanna M.; Whang, Christine; Morrison, R. Sean
Context Palliative care focuses on the relief of pain and suffering and achieving the best possible quality of life for patients. Although traditionally delivered in the inpatient setting, emergency departments (EDs) are a new focus for palliative care consultation teams. Objectives To explore attitudes and beliefs among emergency care providers regarding the provision of palliative care services in the ED. Methods Three semistructured focus groups were conducted with attending emergency physicians from an academic medical center, a public hospital center, and a community hospital. The discussions were digitally recorded and transcribed to conduct a thematic analysis using grounded theory. A coding scheme was iteratively developed to subsequently identify themes and subthemes that emerged from the interviews. Results Twenty emergency physicians participated (mean age 41 years, range 31–61 years, median practice time nine years, 40% female). Providers acknowledged many benefits of palliative care presence in the ED, including provision of a specialized skill set, time to discuss goals of care, and an opportunity to intervene for seriously ill or injured patients. Providers believed that concerns about medicolegal issues impaired their ability to forgo treatments where risks outweigh benefits. Additionally, the culture of emergency medicined—to provide stabilization of acute medical emergencies—was sometimes at odds with the culture of palliative care, which balances quality of life with the burdens of invasive treatments. Some providers also felt it was the primary physician’s responsibility, and not their own, to address goals of care. Finally, some providers expressed concern that palliative care consultation was only available on weekdays during daytime hours. Automatic consultation based on predetermined criteria was suggested as a way to avoid conflicts with patients and family. Conclusion Emergency providers identified many benefits to palliative care consultation. Solving logistical problems and developing clear indications for consultation might help increase the use of such services. PMID:21802899
Kozlov, Elissa; Carpenter, Brian D; Thorsten, Michael; Heiland, Mark; Agarwal, Anupam
Palliative care consultation teams (PCCTs) provide care that enhances quality of life. The effectiveness of PCCTs depends, however, on their timely utilization by other providers. The goal of this study was to examine the timing of palliative care consultation requests and responses at a single Veteran Affairs Medical Center. The median interval between admission and consultation request was 5 days (range = 0-73 days). The median interval between consultation request and death was 23 days (range = 0-847 days). In logistic regressions, timing variables were not significant predictors of whether consultation recommendations were made or implemented. There is substantial variability in when patients receive a palliative care consultation. Many patients receive palliative care within the first week of hospitalization and their final month of life. PMID:25024458
Morgan, Deidre Diane; Swetenham, Kate; To, Timothy Hong Man; Currow, David Christopher
Background Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype. PMID:25189279
Hennessy, John E.; Lown, Beth A.; Landzaat, Lindy; Porter-Williamson, Karin
Although palliative care is not new to health care or to oncology, oncologists still struggle to maximize the value of this type of care across the entire care continuum and across the patient's trajectory of illness. When we don't use what may be the best tools for the job, at the right times in the care path, we miss opportunities to optimize patient and family coping, to limit suffering, and to ensure that our care plans are patient centered. In this article, we look at how we define palliative care and how the tools of palliative medicine can be used to enhance patient care in the outpatient oncology practice setting. PMID:23814513
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. PMID:24245038
: A Global View. J of Symptom and Pain Management, Vol 35, No 5, May 2008 · Lynch T, Connor S & Clark D: Mapping Levels of Palliative Care Development: A Global Update. J of Symptom and Pain Management, Vol 45
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. PMID:25007796
Vermylen, Julia H; Szmuilowicz, Eytan; Kalhan, Ravi
COPD is a leading cause of morbidity and mortality worldwide. Patients suffer from refractory breathlessness, unrecognized anxiety and depression, and decreased quality of life. Palliative care improves symptom management, patient reported health-related quality of life, cost savings, and mortality though the majority of patients with COPD die without access to palliative care. There are many barriers to providing palliative care to patients with COPD including the difficulty in prognosticating a patient’s course causing referrals to occur late in a patient’s disease. Additionally, physicians avoid conversations about advance care planning due to unique communication barriers present with patients with COPD. Lastly, many health systems are not set up to provide trained palliative care physicians to patients with chronic disease including COPD. This review analyzes the above challenges, the available data regarding palliative care applied to the COPD population, and proposes an alternative approach to address the unmet needs of patients with COPD with proactive primary palliative care. PMID:26345486
Dobrof, Judith; Heyman, Janna C; Greenberg, Reva M
In this article, the authors describe the development of a multidisciplinary, interfaith, grassroots community group of professionals and laypersons who have created a replicable model to enhance palliative and end-of-life care. The Collaborative for Palliative Care leverages existing community assets and capacities within the health and social service programs of Westchester County, New York, resulting in a unique public-private partnership. It has played a critical role in changing the culture of care for residents of Westchester who are faced with the challenges of serious and terminal illness. PMID:21391075
Kirby, Emma; Broom, Alex; Good, Phillip
Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. Design Qualitative study using semistructured interviews. Setting Two health services with public as well as private clinical environments in a major metropolitan area of Australia. Participants Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care. Results Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time. Conclusions The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care. PMID:25270859
Multidisciplinary team working is essential to the delivery of specialist palliative care. Recent government initiatives have focused on improving the quality of patient care through a collaborative approach. The palliative care directorate of the Thames Gateway NHS Trust developed a patient record system that could be utilised by all health care professionals. An audit was carried out and showed that the new documentation, which provides only one set of records, improves the clarity of information, enhances communication, avoids duplication and helps to maintain the continuity of the patient's journey. PMID:12617011
Kydd, Angela; Sharp, Barbara
The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia. PMID:26586105
Background Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. Methods Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets). Results Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. Conclusions To systematically develop palliative care, it makes sense to define fields of action with individual targets. For Germany, it can be recommended to give priority to the targets that were highlighted as the most relevant in this study. The next step will be to develop, implement and evaluate tangible measures to achieve these targets. PMID:20429901
Javier, Noel S C; Montagnini, Marcos L
Disability is a common problem among hospice and palliative care patients. It leads to depression, poor quality of life, increased caregiver needs, health care resource utilization, and need for institutionalization. There is a growing body of evidence that rehabilitation interventions improve functional status, quality of life, and symptoms such as pain and anxiety in this population. Having adequate knowledge about rehabilitation is essential for the provision of comprehensive end-of-life care. The goals of this article are to review the role and benefits of rehabilitation in hospice and palliative care; to discuss the elements of patient assessment for rehabilitation including the use of functional assessment tools; and to review the roles of physical, occupational, and speech therapy in hospice and palliative care patients. PMID:21592031
Walter, Jennifer K.; DeCamp, Lisa Ross; Warrier, Kavita S.; Murphy, Terrance P.; Keefer, Patricia M.
BACKGROUND AND OBJECTIVE Parents of children with complex chronic conditions report fragmented care, unmet medical needs, and financial strain from health care costs. The aim of this study was to identify both prevalent themes discussed during pediatric palliative care consultation of patients with complex chronic conditions cared for by pediatric generalists and variation in consultation content by age and timing of consultation in disease course. METHODS Forty randomly selected initial inpatient or outpatient consultation notes authored by the pediatric palliative care team at an academic, tertiary care children’s hospital. Inclusion required that patients were primarily cared for by general pediatricians, pediatric hospitalists, or pediatric intensivists, instead of subspecialists. Qualitative analysis by 5 team members utilizing consensus-based findings was used to develop themes. Descriptive statistics were used to describe variations in themes across age and disease course. RESULTS Common themes included thorough review of patient baseline functioning, current symptoms, assessment of family’s understanding of the prognosis of the patient, coordination of communication with other medical teams and outpatient health care services, consideration of caregiver resources and burdens, and offering a framework for decision-making. Variation in consult themes by age/disease course included more discussion of communication problems and symptom management when patients were at their baseline, but otherwise little variation was found. CONCLUSIONS Common themes covered in initial consultations correspond with documented unmet needs for chronically ill children. There was no significant variation in consultation themes by age/disease course, suggesting that generalists could broadly apply palliative care techniques to improve family-centered care. PMID:24340413
Stevens, M M; Dalla Pozza, L; Cavalletto, B; Cooper, M G; Kilham, H A
Important differences become evident in a comparison of cancer pain between children and adults. Management of pain in children is commonly multidisciplinary, is less dependent on invasive measures and relies more on systemic therapy. Children are not little adults: their immaturity, developing cognition and dependence all influence their experience and interpretation of pain. Much progress has been made in altering practices such as under-prescribing and underdosing that have adversely affected adequate control of pain in children. The challenge for paediatric health care providers in the mid 1990s is not only to be informed of current practices in pain and symptom control in paediatric palliative care, but also to remember to establish those practices in day to day management. Even though pain and its effects in children are now better understood, it is often still not managed optimally. Good management of pain in children depends on accurate assessment. In the past 10 years, assessment of pain in children has advanced considerably. However, assessment of pain in the preverbal child is still inadequate and in need of attention. Sedation, tolerance and involuntary movements may occur as side effects of opioids in children and may cause significant problems in management of the dying child. Psychostimulants can diminish sedation to some extent, but there is little information as yet on the value of these drugs in children. Tolerance to opioids may develop quickly, leading to poor control of pain and distress for the child. Strategies to improve management of tolerance include use of regional anaesthetic techniques such as the epidural/intrathecal route for opioid administration. Involuntary movements induced by opioids are uncommon but have the potential to cause significant distress. The mechanisms underlying these side effects of opioids need to be established. Strategies are needed for the effective treatment and prevention of these side effects. Neuropathic pain can be severe, distressing and difficult to treat. Experience of its treatment in terminally ill children is limited. Effective use of tricyclic antidepressants and systemically administered local anaesthetics is still to be determined. Regional anaesthetic techniques may be of great benefit when neuropathic pain cannot be controlled with systemic therapy. Procedural pain is more common than pain related to disease in the management of paediatric cancer. Further research is needed to identify the best approach to its management. We have found nitrous oxide to be of great benefit in management of procedural pain in children. Non-pharmacological methods of treatment of pain in children, such as transcutaneous electrical nerve stimulation or acupuncture, may also be useful and should receive continuing evaluation. There are significant and current issues in paediatric palliative care besides management of pain. There are difficulties in the provision of home nursing care for children with cancer in the terminal phase of their illness, including lack of community nursing services at night and on weekends and lack of adequate home help for parents. Attitudes of staff involved in the care of the child and family and their commitment to working as a multidisciplinary team strongly influence the quality and success of care given. Pain control and palliative medicine are evaluable by measures of quality assurance or outcome, and adoption of such evaluations should improve standards of care. Euthanasia in children is even more difficult as an ethical dilemma than in adults. Optimum symptom control with current techniques should almost always obviate its consideration. We are opposed to euthanasia. Psychosocial and cultural issues all influence the family's experience of palliative care. Further research is necessary in all of these areas.(ABSTRACT TRUNCATED) PMID:8564995
Bazzan, Anthony J.; Newberg, Andrew B.; Cho, William C.; Monti, Daniel A.
The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting. PMID:24288570
...Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...Proposed Collection: Title: NINR End-of-Life and Palliative Care Science Needs...Information Collection: The NINR End-of-Life Science Palliative Care (EOL...
...Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...Proposed Collection: Title: NINR End-of-Life and Palliative Care Science Needs...Information Collection: The NINR End-of-Life Science Palliative Care (EOL...
Riffin, Catherine; Pillemer, Karl; Chen, Emily K.; Warmington, Marcus; Adelman, Ronald D.; Reid, M. C.
Using an innovative approach, we identified research priorities in palliative care to guide future research initiatives. We searched 7databases (2005–2012) for review articles published on the topics of palliative and hospice–end-of-life care. The identified research recommendations (n = 648) fell into 2 distinct categories: (1) ways to improve methodological approaches and (2) specific topic areas in need of future study. The most commonly cited priority within the theme of methodological approaches was the need for enhanced rigor. Specific topics in need of future study included perspectives and needs of patients, relatives, and providers; underrepresented populations; decision-making; cost-effectiveness; provider education; spirituality; service use; and inter-disciplinary approaches to delivering palliative care. This review underscores the need for additional research on specific topics and methodologically rigorous research to inform health policy and practice. PMID:25393169
Brueckner, Torben; Schumacher, Martin; Schneider, Nils
Background Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. Methods In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description. Results Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy. Conclusion General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries between health care professionals. Older people might particularly benefit if "talking" medicine and time-consuming care were properly catered for, financially and organizationally, in the health care system. PMID:19549336
Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1) many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2) patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3) no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study populations are a nearly representative sample of advanced cancer patients, bereaved family members, physicians, and nurses in the region. Qualitative process studies consist of 3 studies with each aim: 1) to describe the process in developing regional palliative care in each local context, 2) to understand how and why the regional palliative care program led to changes in the region and to propose a model for shaping regional palliative care, and 3) to systemically collect the barriers of palliative care at a regional level and potential resolutions. The study methodology is a case descriptive study, a grounded theory approach based on interviews, and a content analysis based on systemically collected data, respectively. Discussion This study is, to our knowledge, one of the most comprehensive evaluations of a region-based palliative care intervention program. This study has 3 unique aspects: 1) it measures a wide range of outcomes, including quality of care and quality of life measures specifically designed for palliative care populations, whether patients died where they actually preferred, the changes in physicians and nurses at a regional level; 2) adopts qualitative studies along with quantitative evaluations; and 3) the intervention is without a fundamental change in health care systems. A comprehensive understanding of the findings in this study will contribute to a deeper insight into how to develop community palliative care. Trial Registration UMIN Clinical Trials Registry (UMIN-CTR), Japan, UMIN000001274. PMID:22233691
Smith, Grant; Bernacki, Rachelle; Block, Susan D
By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, "triggered" interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment. PMID:25723619
Chan, Kwok-Ying; Yip, Terence; Sham, Mau-Kwong; Cheng, Benjamin Hon-Wai; Li, Cho-Wing; Wong, Yim-Chi; Lau, Vikki Wai-Kee
People with intellectual disabilities are among the most disadvantaged groups in society. Here we report a mentally incompetent end stage renal failure (ESRF) patient with frequent emergency visits who made a significant improvement in symptoms control and reduction in casualty visits after introduction of renal palliative care service. Multidisciplinary approach would be useful in this case. PMID:25838954
The mobile palliative care and support team nurse works in different departments within the hospital. The clinical situation of a patient enables the team to identify in what ways she is declining and thereby participate in the care management in order to favour the patient's return home. PMID:26567068
WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA
Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children 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; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M
Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863
Harding, R; Karus, D; Easterbrook, P; Raveis, V; Higginson, I; Marconi, K
Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era. PMID:15681714
Background In Germany, case management in a palliative care unit was first implemented in 2005 at the Department of Palliative Medicine at the University Hospital Cologne. One of the purposes of this case management is to deal with enquiries from patients and their relatives as well as medical professionals. Using the Case Management Process Model of the Case Management Society of America as a reference, this study analysed (a) how this case management was used by different enquiring groups and (b) how patients were identified for case management and for palliative care services. The first thousand enquiries were analysed considering patient variables, properties of the enquiring persons and the content of the consultations. Results Most enquiries to the case management were made by telephone. The majority of requests regarded patients with oncological disease (84.3 %). The largest enquiring group was composed of patients and relatives (40.8 %), followed by internal professionals of the hospital (36.1 %). Most of the enquiring persons asked for a patient’s admission to the palliative care ward (46.4 %). The second most frequent request was for consultation and advice (30.9 %), followed by requests for the palliative home care service (13.3 %). Frequent reasons for actual admissions were the need for the treatment of pain, the presence of symptoms and the need for nursing care. More than half of the enquiries concerning admission to the palliative care ward were followed by an admission. Conclusions Case management has been made public among the relevant target groups. Case management as described by the Case Management Process Model helps to identify patients likely to benefit from case management and palliative care services. In addition, with the help of case management palliative patients may be allocated to particular health care services. PMID:23116368
Yu, Mo; Guerriere, Denise N; Coyte, Peter C
In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders. PMID:25443659
Street, Annette F; Love, Anthony
This paper explores the dimensions of privacy evident in the views of practice of health professionals in different inpatient palliative care settings. Eighty-eight semi-structured interviews were conducted with doctors, nurses and pastoral carers at 12 Australian regional and metropolitan locations. Transcribed interviews were coded and discursively content analysed. Privacy was one category that emerged in the transcript analysis. Results showed the necessity of attending to the physical, psycho-social and moral dimensions of privacy in the provision of palliative care that respects dignity, autonomy and supportive social relationships. PMID:15686810
Karam, Chafic Y; Paganoni, Sabrina; Joyce, Nanette; Carter, Gregory T; Bedlack, Richard
As palliative care physicians become increasingly involved in the care of patients with amyotrophic lateral sclerosis (ALS), they will be asked to provide guidance regarding the use of supplements, diet, exercise, and other common preventive medicine interventions. Moreover, palliative care physicians have a crucial role assisting patients with ALS in addressing health care decisions to maximize quality of life and cope with a rapidly disabling disease. It is therefore important for palliative care physicians to be familiar with commonly encountered palliative care issues in ALS. This article provides an evidenced-based review of palliative care options not usually addressed in national and international ALS guidelines. PMID:25202033
Background We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. PMID:25075202
Glare, Paul; Miller, Jeanna; Nikolova, Tanya; Tickoo, Roma
Nausea and vomiting are portrayed in the specialist palliative care literature as common and distressing symptoms affecting the majority of patients with advanced cancer and other life-limiting illnesses. However, recent surveys indicate that these symptoms may be less common and bothersome than has previously been reported. The standard palliative care approach to the assessment and treatment of nausea and vomiting is based on determining the cause and then relating this back to the “emetic pathway” before prescribing drugs such as dopamine antagonists, antihistamines, and anticholinergic agents which block neurotransmitters at different sites along the pathway. However, the evidence base for the effectiveness of this approach is meager, and may be in part because relevance of the neuropharmacology of the emetic pathway to palliative care patients is limited. Many palliative care patients are over the age of 65 years, making these agents difficult to use. Greater awareness of drug interactions and QTc prolongation are emerging concerns for all age groups. The selective serotonin receptor antagonists are the safest antiemetics, but are not used first-line in many countries because there is very little scientific rationale or clinical evidence to support their use outside the licensed indications. Cannabinoids may have an increasing role. Advances in interventional gastroenterology are increasing the options for nonpharmacological management. Despite these emerging issues, the approach to nausea and vomiting developed within palliative medicine over the past 40 years remains relevant. It advocates careful clinical evaluation of the symptom and the person suffering it, and an understanding of the clinical pharmacology of medicines that are available for palliating them. PMID:21966219
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…
...Request; Pediatric Palliative Care Campaign Pilot Survey Summary...effect if received within 60-days of the date of this publication...Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National...developed a Pediatric Palliative Care Campaign to address the...
The ageing of the population and increase in progressive chronic pathologies constitute a major challenge for society. In parallel, the array of care systems and the partitioning between the different players pose organisational and conceptual difficulties. In the face of this, a palliative care network can seize the opportunity to develop its missions to improve the care pathway for patients and make it easier for them to remain at home. PMID:26567069
Visser, Claire; Hadley, Gina; Wee, Bee
There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by ‘gold standard’ randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patient’s physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a ‘mixed methods approach’ are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes. PMID:26487964
Visser, Claire; Hadley, Gina; Wee, Bee
There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by 'gold standard' randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patient's physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a 'mixed methods approach' are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes. PMID:26487964
Jethwa, Ketan Dipak; Onalaja, Oluwademilade
Aims and method To assess the factors that affect the clinical use of advanced care planning and palliative care interventions in patients with dementia. A literature search of Medline, Embase and PsycINFO was performed to identify themes in advanced care planning and palliative care in dementia. Results In total, 64 articles were found, including 12 reviews, and three key areas emerged: barriers to advanced care planning, raising awareness and fostering communication between professionals and patients, and disease-specific interventions. Clinical implications Most of the studies analysed were carried out in the USA or Continental Europe. This narrative review aims to help guide future primary research, systematic reviews and service development in the UK. PMID:26191437
Logue, Barbara J.
Examines feasibility of palliative approach for all patients, showing reasonable people may refuse even the most exemplary care for themselves or an incompetent relative. Medical realities and alleviation of pointless suffering necessitate that policymakers consider other options, including "active" euthanasia, consistent with patient autonomy and…
Supportive and palliative care research includes studies to prevent or treat the acute and chronic symptoms and morbidities related to cancer and its treatment, and to examine the effects of cancer and its treatment on quality of life and psychosocial issues and treatment strategies at the end of life. Active Projects can range from caregiver issues to geriatrics, physical functioning to cognitive dysfunction.
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…
Espinar Cid, Victoria
The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions. PMID:22548665
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…
Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027
Davies, Nathan; Maio, Laura; Vedavanam, Krish; Manthorpe, Jill; Vernooij-Dassen, Myrra; Iliffe, Steve
Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews (n = 7 and n = 6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway. PMID:24372976
Romotzky, Vanessa; Galushko, Maren; Golla, Heidrun; Voltz, Raymond
Abstract Background: Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach. Objective: Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes. Design: A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively. Setting/Subjects: Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively. Results: Consensus was reached among all respondents (100%) defining the term “severely affected”: 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) “very important.” The workshop documented the paucity of home visits and specialized MS care in nursing homes. Conclusions: Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS. PMID:25068391
McDonald, Aileen; Burjan, Elene; Martin, Sue
This study suggests that yoga can be of benefit to patients (and carers) in palliative care settings. Complementary therapies have been employed in our day care unit for several years--aromatherapy, reflexology and massage--and have grown in popularity, enabling relaxation and a feeling of well-being. For patients striving to remain physically fit and, in consultation with our physiotherapist, we felt there may be a role for a gentle form of yoga. A study of the literature yielded information on yoga and cancer but little evidence of its use in palliative care. Having identified a form of yoga that could be adapted for those with physical frailties-- Dru yoga--a 12-week pilot project was introduced into the day care unit. This proved to be highly successful and has now been incorporated as part of our therapeutic service. PMID:17170669
Downing, Julia; Grant, Liz; Leng, Mhoira; Namukwaya, Elizabeth
The need for palliative care has never been greater. From being significantly present in only five African countries in 2004, palliative care is now delivered in nearly 50% of African countries; however, less than 5% of people in need receive it. To scale-up palliative care, we need greater knowledge about how different models of palliative care work within different health systems. A case study evaluation was undertaken in Kenya and Malawi to define the models used, contextualize them, and identify challenges, best practices, and transferable lessons for scale-up. Visits were made to seven sites and, using an audit tool, data were collected from program staff, hospital staff, and local stakeholders, and care observed as appropriate. Three models of palliative care service delivery were identified, which supports the existing literature, that is, specialist, district hospital level, and community level. However, in looking further, findings show that the major determinants for each model were a set of philosophical questions and assumptions underpinning each and influencing staff and patient decision-making, planning, and allocation of resources. The health system structure and the beliefs about palliative care determined, and were determined most by, referrals, the patient journey, the centeredness of the model, and role definition and training. The models are also closely associated with the physical setting of services. Understanding how the services have developed because of, and indeed despite the geographical setting and the system level, provides us with a different set of indicators of program structure incorporated into the three models. The analysis of models provides pointers to future planning for palliative care. PMID:25936938
Behmann, Mareike; Lückmann, Sara Lena; Schneider, Nils
Background Improving palliative care is a public health priority. However, little is known about the views of public health experts regarding the state of palliative care in Germany and the challenges facing it. The main aim of this pilot study was to gather information on the views of internationally experienced public health experts with regard to selected palliative care issues, with the focus on Germany, and to compare their views with those of specialist palliative care experts. Qualitative guided interviews were performed with ten experts (five from palliative care, five from public health). The interviews were analysed using qualitative content analysis. Findings Older people and non-cancer patients were identified as target groups with a particular priority for palliative care. By contrast to the public health experts, the palliative care experts emphasized the need for rehabilitative measures for palliative patients and the possibilities of providing these. Significant barriers to the further establishment of palliative care were seen, amongst other things, in the powerful lobby groups and the federalism of the German health system. Conclusion The findings suggest that from the experts' point of view (1) palliative care should focus on the needs of older people particularly in view of the demographic changes; (2) more attention should be paid to rehabilitative measures in palliative care; (3) rivalries among different stakeholders regarding their responsibilities and the allocation of financial resources have to be overcome in Germany. PMID:19566946
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. PMID:26614860
Omilion-Hodges, Leah M; Swords, Nathan M
Though research has begun to highlight the centrality of communication in palliative care, studies have yet to focus on the use of mindful communication. Mindful communication is associated with increases in patient care and decreases in physician burnout. Through in-depth, semi-structured interviews the authors sought mindful communication practices from palliative care leaders in American Hospital Association Circle of Life® award-wining units. Four key mindful communication practices emerged: Know your audience, ask questions, discard scripts, and recognize your role. The discussion articulates how key mindful communication practices may be used as a stage model, where key practices may be used individually or in concert, by sole practitioners or within interdisciplinary teams and by new and seasoned clinicians. Theoretical contributions and areas for future inquiry are also discussed. PMID:26360619
Naylor, Wayne A
Wound management in palliative patients is often a very challenging area of care. There are many unique issues that can combine to produce complicated wound management scenarios, including the types of wounds and wound symptoms most commonly affecting palliative care patients, as well as the presence of concurrent disease and associated treatment. Problems exist with the availability of suitable dressings and balancing life expectancy with the goals of wound care. A significant, and possibly under-recognized, issue is the emotional and social distress experienced by these patients, which can be directly attributed to their wound. These problems must all be recognized and addressed in order to manage wounds effectively in this patient population. This article aims to explore these issues and offer advice on the management of wound-related symptoms, with the ultimate goal of improving patients' quality of life. PMID:16471044
Burge, F.; McIntyre, P.; Twohig, P.; Cummings, I.; Kaufman, D.; Frager, G.; Pollett, A.
OBJECTIVE: To explore issues family physicians face in providing community-based palliative care to their patients in the context of a changing health care system. DESIGN: Focus groups. SETTING: Small (< 10,000 population), medium-sized (10,000 to 50,000), and large (> 50,000) communities in Nova Scotia. PARTICIPANTS: Twenty-five men and women physicians with varying years of practice experience in both solo and group practices. METHOD: A semistructured approach was used, asking physicians to reflect on recent palliative care experiences in order to explore issues of care. MAIN FINDINGS: Five themes emerged from the discussions: resources needed, availability of family support, time and money supporting physicians' activities, symptom control for patients, and physicians' emotional reactions to caring for dying patients. CONCLUSION: With downsizing of hospitals and greater emphasis on community-based care, the issues identified in this study will need attention, particularly in designing an integrated service delivery model for palliative care. PMID:11723593
Claxton-Oldfield, Stephen; Claxton-Oldfield, Jane
The goal of this study was to examine the impact of hospice palliative care work on volunteers' lives. In-depth interviews were conducted with 23 direct-patient care volunteers. More than half of the volunteers became involved in hospice palliative care because of their own experiences with family members and/or friends who have died. Most of the volunteers reported that they were different now or had changed in some way since they have been volunteering (e.g., they had grown in some way, have learned how to keep things in perspective). In addition, most of the volunteers felt that their outlook on life had changed since they started volunteering (e.g., they were more accepting of death, and they learned the importance of living one day at a time). Volunteers reported doing a number of different things to prevent compassion fatigue or burnout (e.g., reading a book, listening to music, talking to others, and taking time off from volunteering). Most of the volunteers said that they would tell anyone who might be thinking of volunteering in hospice palliative care that it is a very rewarding activity and/or that they should try it. Finally, many of the volunteers offered suggestions for doing things differently in their programs. PMID:17895491
Sawada, Koichiro; Shimada, Masanari; Kadoya, Shinichi; Endo, Naoki; Ishiguro, Kaname; Takashima, Rumi; Amemiya, Yoko; Fujikawa, Yasunaga; Ikezaki, Tomoaki; Takeuchi, Miyako; Kitazawa, Hidenori; Iida, Hiroyuki; Koseki, Shiro; Morita, Tatsuya; Sasaki, Koji; Kashii, Tatsuhiko; Murakami, Nozomu
Aim: To examine the feasibility and usefulness of a novel region-based pathway: the Regional Referral Clinical Pathway for Home-Based Palliative Care. Method: This was a feasibility study to evaluate the frequency of variances and the perceived usefulness of pathway using in-depth interviews. All patients with cancer referred to the palliative care team between 2011 and 2013 and received home care services were enrolled. Result: A total of 44 patients were analyzed, and pathway was completed in all the patients. The target outcome was achieved in 61.4% while some variances occurred in 54.5%. Nine categories were identified as the usefulness of the pathway, such as reviewing and sharing information and promoting communication, education, motivation, and relationships. Conclusion: This novel pathway is feasible and seems to be useful. PMID:24814723
... patient resides. In their home, assisted living facility, nursing facility, or hospital. Some hospices have facilities where people can live, like a hospice residence, or receive care for short-term reasons, such as acute pain or symptom management. Who provides these services? It ...
Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Mauer, Christine
The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper. PMID:24319482
The extension of the Belgian law on euthanasia to minors during the course of 2014 raises questions with regard to the needs of children in the context of paediatric palliative care. These needs concern essentially the focus given to the interrelations between the child, their family and the caregiving team as well as to the relief of the physical, psychological and spiritual pain. Ethical guidelines help to fuel the discussions surrounding professional practices. PMID:25608370
This paper proposes a theoretical framework for understanding how music therapy elicits and supports depth experiences in palliative care. The author explores music therapy as a containing or sacred space in which ventures into the realm of psychospiritual awareness may safely occur. The ultimate goal is to facilitate the process of connecting to that which is psychologically and spiritually significant for the patient, thereby transforming experiences of suffering into those of meaning. PMID:11816753
Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B
In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed. PMID:26431077
Kramer, Betty J.; Cleary, Jim; Mahoney, Jane E.
Challenges exist in assimilating palliative care within community based services for nursing home eligible low-income elders with complex chronic illness as they approach the end of life. This study assessed the feasibility of a consultation model, with hospice clinicians working with three Care Wisconsin Partnership Program teams. Consults occurred primarily during team meetings and also informally and on joint patient visits and were primarily with the palliative care nurse addressing physical issues. 57% of consultant recommendations were implemented. Benefits of consultation were identified with focus groups of clinical staff as were opportunities and barriers to the implementation. Models of integration are proposed. PMID:25494931
Herrera, Emilio; Rocafort, Javier; De Lima, Liliana; Bruera, Eduardo; García-Peña, Francisco; Fernández-Vara, Guillermo
The Regional Palliative Care Program in Extremadura (RPCPEx) was created and fully integrated into the Public Health Care System in 2002. The local health care authorities of Extremadura (a large sparsely populated region in the west of Spain with 1,083,897 inhabitants) decided to guarantee palliative care as a basic right, offering maximum coverage, availability, and equity, functioning at all levels of assistance and based on the complexity of the case. The program provides full coverage of the region through a network of eight Palliative Care Teams under the direction of a regional coordinator. The mobile teams work in acute hospitals and in the community. This paper describes the program, using qualitative and quantitative indicators of structure, process, and outcome. Qualitative indicators assess, among others, the performance of the regional network, including the outcomes of the quality, training, registry, treatment, and research groups. Quantitative indicators applied consisted of the number of professionals (1/26,436 inhabitants), number of patients (1,635/million inhabitants/year), number of activities/million inhabitants/year (6,183 hospital and 3,869 home visits; 1,863 consultations; 14,748 advising services; 11,539 coordination meetings; and 483 educational meetings), cost of care (2,242,000 Euros per year), and opioid consumption (494,654 daily defined doses/year). Four years after the planning process and three years after becoming operational, the RPCPEx offers an effective and efficient model integrated into the public health care system and is able to offer comprehensive coverage, availability, equity and networking among all the structures and levels of the program. Several structural and organizational tools were developed, which may be adopted by other programs within the scope of public health. The provision of palliative care should not be conditioned by the patient's geographical location, his or her condition or disease or on the ability to pay, but on need alone. This model has successfully implemented palliative care in a region that offered many challenges, including limited resources and a disperse population in a geographically extensive region. These variables are also common in many rural areas in developing countries and the regional palliative care program offers a flexible approach that can be adapted to the needs and resources in different settings and countries in the world. PMID:17482053
Yamagishi, Akemi; Morita, Tatsuya; Komura, Kazue; Sueda, Chie; Shirahige, Yutaka; Kinoshita, Hiroya; Akizuki, Nobuya; Suzuki, Satoshi; Kato, Masashi; Eguchi, Kenji
Quality palliative care is required at the community level, and interaction among multidisciplinary practitioners from various regions might be useful for improving community palliative care. The aims of the present study are: 1)to evaluate the participant's-perception of the usefulness of the interactive conference of multidisciplinary multiregional healthcare practitioners, and 2)to clarify the areas needing to be improved in community palliative care, raised in the conference. A total of 336 multidisciplinary practitioners from 4 areas of Japan participated in the conference. Overall, more than 80% of the participants evaluated the conference as very useful or useful; more than half reported that the conference was very useful or useful to obtain a concrete solution for the obstacles and to utilize the lessons though the conference as a means to improve quality of care in their own community. The identified areas needing improvement are: 1)developing an interactive networking among healthcare practitioners and/or organizations in the community; 2)developing a system of high quality, easily-available specialized palliative care service; 3)improving the knowledge and perception of medical professionals concerning palliative care and home care; 4)developing a collaborative care system between hospitals and community healthcare practitioners and/or organizations; 5)developing a collaborative care system among community healthcare practitioners and/or organizations; 6)optimizing existing resources available in the community; 7)improving the perception of patients and the general public about palliative care, home care, and cancer; and 8)to reevaluate the regulations, laws, healthcare system, and financial or human resources at the social level. PMID:22083205
This article draws on Illich's definition of health and explores the perspective of facing death as a process of adaptation. Research into psychoneuroimmunology is discussed. This focuses on using one's own resources, which the author sees as a central tenet of holism. A key aspect of this approach is not only empowerment of patients, but also of nurses, allowing them to be self-aware, self-valuing and to practise self-care. The article mentions an educational strategy to encourage a health-promoting approach. This course uses the concept of holism as a framework for teaching and practice of palliative care. PMID:12419990
Jing, Lv; Wu-Jun, Xue; Feng, Tan
Background: Many patients on peritoneal dialysis experience a poor quality of life because of a high burden of comorbid conditions. Dialysists must pay more attention to reducing a patient's pain and suffering, both physical and psychological and improve the quality of life for the patients as much as possible. A consensus regarding eligibility for palliative care and the delivery of these inventions does not currently exist. Objective: The present study aimed to describe the implementation of palliative care for end-stage renal failure patients on peritoneal dialysis. Design: A report on three cases. Materials and Methods: This study included three outpatients on peritoneal dialysis who received palliative care and died between January 2008 and June 2010. Measurements: The patients' comorbidities, nutritional status, and functional status were evaluated using the Charlson comorbidity score, subjective global assessment, and Karnofsky Performance Score index, respectively. The Hamilton depression and Hamilton anxiety scales were also employed. The patients' clinical manifestations and treatments were reviewed. Results: Each patient displayed 11-16 symptoms. The Charlson comorbidity scores were from 11 to 13, the subjective global assessment indicated that two patients were class assigned to “C” and one to class “B”, and the mean Karnofsky index was <40. Among these patients, all experienced depression and two experienced anxiety, Low doses of hypertonic glucose solutions, skin care, psychological services, and tranquillizers were intermittently used to alleviate symptoms, after making the decision to terminate dialysis. The patients died 5 days to 2 months after dialysis withdrawal. Conclusion: The considerable burden associated with comorbid conditions, malnutrition, poor functional status, and serious psychological problems are predictors of poor patient prognoses. Withdrawal of dialysis, palliative care, and psychological interventions can reduce patient distress and improve the quality of life before death, with the care provided. PMID:25125871
Puchalski, Christina M; Dorff, Rabbi Elliot; Hendi, Imam Yahya
In end-of-life care, attending to spiritual needs ensures that a dying patient has the opportunity to find meaning in the midst of suffering and to have the opportunity for love, compassion, and partnership in their final journey. This article summarizes some of the beliefs and traditions from Judaism, Islam, and Christianity that affect people as they face their own dying and mortality. People who do not participate in any formal religion also have a drive to find meaning in the midst of suffering and dying. They may find this in personal ways. This article presents some practical tools to help clinicians address and respect spiritual and religious issues of patients. It is crucial that our culture and our systems of care for the dying include a spiritual approach so that dying can be meaningful and even filled with hope. PMID:15541620
Paediatric Palliative Care in Switzerland is still in its infancy. In comparison to palliative care in adults, the knowledge about palliative care in children is limited. To facilitate the decision of when to start palliative care, an instrument for health professionals has been developed. The instrument, called Paediatric Palliative Screening Scale (PaPaS Scale), builds on five domains shedding light on the child's illness: 1) trajectory of disease and impact on daily activities; 2) treatment options and burden of treatment; 3) symptoms, controllability, and problem burden; 4) preferences of patient or parents; and 5) life expectancy. The aims of a reasonably starting palliative care are quality of life and the ability to actively create the rest of life. PMID:25758969
In this article, the author first examines the ageist bias that is prevalent in clinics today. The author then reviews the basic communication principles and strategies that can help clinicians make their conversations with patients more focused and meaningful, thereby preparing patients and their family caregivers to make decisions in a crisis and to engage in planning for end-of-life care as early and intensively as possible. PMID:25920058
Hinshaw, Daniel B
The key points of this article are: Spirituality gives meaning and purpose to life. Spiritual issues that may lie dormant for many years often surface at the end of life. Not all people are religious, but all are spiritual. Suffering affects the whole person and often is connected to the meaning that a patient associates with a symptom or symptoms. Spiritual history validates the importance of a patient's spirituality and gives permission to the patient for future discussion/questions. Spiritual care is the job of all members of the interdisciplinary team(including surgeons), not just chaplains. It is critical to be open to spiritual discussions/issues as they arise while seeking the assistance of professional pastoral care staff where appropriate. Redefining hope: hospice can help the dying patient to redefine hope in terms of realistic goals-from a hope for cure to a hope for good symptom relief. Reconciliation is the work of the dying. Empathy is the opportunity for those who care for the dying. PMID:15833470
... Care Campaign Pilot Survey Summary: In compliance with the requirement of Section 3506(c)(2)(A) of the.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National Institute of Nursing... developed a Pediatric Palliative Care Campaign to address the communications challenges faced by health...
Clemmer, Sarah J.; Ward-Griffin, Catherine; Forbes, Dorothy
Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis…
Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien
Objectives There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. Methods We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question ‘What matters most for EOL care?’ Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care. Results Data from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patient's Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams’ Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family. Conclusions 9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families. PMID:26124510
Beccaro, Monica; Costantini, Massimo; Merlo, Domenico Franco
Background The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care for Italian cancer patients during the last three months of their lives, the proportion receiving palliative care support at home and in hospital, and the factors associated with the referral to palliative care services. Methods This is a mortality follow-back survey of 2,000 cancer deaths identified with a 2-stage probability sample, representative of the whole country. Information on patients' experience was gathered from the non-professional caregiver through an interview, using an adapted version of the VOICES questionnaire. A section of the interview concerned the places of care and the palliative care services provided to patients. Multivariate logistic regression analyses were conducted to identify the determinants of palliative care service use. Results Valid interviews were obtained for 67% of the identified caregivers (n = 1,271). Most Italian cancer patients were cared for at home (91%) or in hospital (63%), but with substantial differences within the country. Only 14% of Italian cancer patients cared for at home against 20% of those admitted to hospital, received palliative care support. The principal determinants identified for receiving these service were: an extended interval between diagnosis and death (P = 0.01) and the caregiver's high educational level (P = 0.01) for patients at home; the low patient's age (P < 0.01) and the caregiver's high educational level (P = 0.01) for patients in hospital. Conclusion In Italy palliative care services are not equally available across the country. Moreover, access to the palliative care services is strongly associated with socio demographic characteristics of the patients and their caregivers. Italian Policy-makers need to equalise palliative care provision and access across the country to meet the needs of all cancer patients. PMID:17466064
O'Mahony, Sean; McHenry, Janet; Blank, Arthur E; Snow, Daniel; Eti Karakas, Serife; Santoro, Gabriella; Selwyn, Peter; Kvetan, Vladimir
Nearly half of Americans who die in hospitals spend time in the intensive care unit (ICU) in the last 3 days of life. Minority patients who die in the ICU are less likely to formalize advance directives and surviving family members report lower satisfaction with the provision of information and sensitivity to their cultural traditions at the end-of-life. This is a descriptive report of a convenience sample of 157 consecutive patients served by a palliative care team which was integrated into the operations of an ICU at Montefiore Medical Center in the Bronx, New York, from August 2005 until August 2007. The team included an advance practice nurse (APN) and social worker. A separate case-control study was conducted comparing the length of hospital stay for persons who died in the ICU during the final 6 months of the project, prior to and post-palliative care consultation for 22 patients at the hospital campus where the project team was located versus 24 patients at the other campus. Pharmaco-economic data were evaluated for 22 persons who died with and 43 who died without a palliative care consultation at the intervention campus ICU to evaluate whether the project intervention was associated with an increase in the use of pain medications or alterations in the use of potentially non-beneficial life-prolonging treatments in persons dying in the ICU. Data was abstracted from the medical record with a standardized chart abstraction instrument by an unblinded research assistant. Interviews were conducted with a sample of family members and ICU nurses rating the quality of end-of-life care in the ICU with the Quality of Dying and Death in the ICU instrument (ICUQODD), and a family focus group was also conducted. Forty percent of patients were Caucasian, 35% were African American or Afro-Caribbean, 22% Hispanic and 3% were Asian or other. Exploration of the patients' and families' needs identified significant spiritual needs in 62.4% of cases. Education on the death process was provided to 85% of families by the project team. Twenty-nine percent of patients were disconnected from mechanical ventilators following consultation with the Palliative Care Service (PCS), 15.9% of patients discontinued the use of inotropic support, 15.3% stopped artificial nutrition, 6.4% stopped dialysis and 2.5% discontinued artificial hydration. Recommendations on pain management were made for 51% of the project's patients and symptom management for 52% of patients. The project was associated with an increase in the rate of the formalization of advance directives. Thirty-three percent of the patients who received PCS consultations had 'do not resuscitate' orders in place prior to consultation and 83.4% had 'do not resuscitate' orders after the intervention. The project team referred 80 (51%) of the project patients to hospice and 55 (35%) patients were enrolled on hospice, primarily at the medical center. The mean time from admission to palliative care consultation at the project site was 2.8 days versus 15.5 days at the other campus (p = 0.0184). Median survival times from admission to the medical center were not significantly different when stratified by palliative care consultation status: 12 days for the control group (95% CI 8-18) and 13.5 days for the intervention group (95% CI 8-20). Median charges for the use of opioid medications were higher (p = 0.01) for the intervention group but lower for use of laboratory (p = 0.004) and radiology tests (p = 0.027). We conclude that the integration of palliative care experts into the operation of critical care units is of benefit to patients, families and critical care clinicians. Preliminary evidence suggest that such models may be associated with improved quality of life, higher rates of formalization of advance directives and utilization of hospices, as well as lower use of certain non-beneficial life-prolonging treatments for critically ill patients who are at the end of life. PMID:19825893
Roeland, Eric; Ku, Grace
Stem cell transplantation (SCT) and palliative care (PC) may initially appear to be distant extremes in the continuum of care of patients with hematologic malignancies, opposed by multiple obstacles preventing their integration. Rather, we will posit that both fields share many similarities and have much to learn from one another. PC has increasing relevance in cancer care given recent studies that link PC to improved quality-of-life, survival, and decreased cost of care. Understanding modern conceptualizations of PC and its role within SCT is key. Through the report of a single academic medical center experience with an integrated SCT and PC model over the last decade, we will discuss future opportunities for strengthening collaboration between SCT and PC. PC in SCT should be considered from the day of diagnosis and tied to need, not to prognosis. PMID:26637762
Casañas i Comabella, Carolina; Wanat, Marta
Difficulties relating to supportive and palliative care research are often reported. However, studies have highlighted that people near the end of life are happy to participate in research and want their voices heard. Thus, one may raise a twofold question: are we limiting the free will of people who are seriously ill? And are we missing important data, which probably cannot be obtained from other sources? In light of this landscape, a new opportunity has emerged: the use of social media (SM). This paper provides a comprehensive summary of SM, including its theoretical underpinnings, and recent examples of successful uses of SM in healthcare research. It also outlines the opportunities (wider reach, direct access, the potential of Big Data, readiness of research data, empowered participants) and challenges (anonymity of participants, digital divide, sample bias, screening and 'saying no' to participants, data analysis) of using SM in end-of-life care research. Finally, it describes the practical steps that a researcher could follow to recruit patients using SM. Implications for palliative care clinicians, researchers and policymakers are also discussed, with a focus on the need to facilitate patient-centred care through the use of SM. The need for relevant and updated guidelines in this new, emerging field is highlighted. PMID:25311211
Park, Elyse R.; Greer, Joseph A.; Jackson, Vicki A.; Jacobsen, Juliet C.; Gallagher, Emily R.; Temel, Jennifer S.
Abstract Background: Early palliative care provides better quality of life, increased prognostic awareness, and even improved survival for patients with advanced cancer but how the integrated care model achieves these outcomes has not been completely explained. Methods: To better understand the clinical approach to early outpatient care from the clinicians' perspective, we conducted focus groups with the palliative care clinicians who had participated in a randomized trial of early palliative care for metastatic lung cancer. Results: Clinicians described their role in providing early palliative care as having three distinct roles in the outpatient setting: (1) managing symptoms to improve functional status and as a bridge to other issues; (2) engaging patients in emotional work to facilitate coping, accepting, and planning; and (3) interpreting the oncologist for the patient and the patient for the oncologist. Conclusions: These data lay the foundation for developing training programs for clinicians in early integrated palliative care. PMID:25390467
Hannon, Breffni; Zimmermann, Camilla; Knaul, Felicia M; Powell, Richard A; Mwangi-Powell, Faith N; Rodin, Gary
Despite being declared a basic human right, access to adult and pediatric palliative care for millions of individuals in need in low- and middle-income countries (LMICs) continues to be limited or absent. The requirement to make palliative care available to patients with cancer is increasingly urgent because global cancer case prevalence is anticipated to double over the next two decades. Fifty percent of these cancers are expected to occur in LMICs, where mortality figures are disproportionately greater as a result of late detection of disease and insufficient access to appropriate treatment options. Notable initiatives in many LMICs have greatly improved access to palliative care. These can serve as development models for service scale-up in these regions, based on rigorous evaluation in the context of specific health systems. However, a multipronged public health approach is needed to fulfill the humane and ethical obligation to make palliative care universally available. This includes health policy that supports the integration of palliative care and investment in systems of health care delivery; changes in legislation and regulation that inappropriately restrict access to opioid medications for individuals with life-limiting illnesses; education and training of health professionals; development of a methodologically rigorous data and research base specific to LMICs that encompasses health systems and clinical care; and shifts in societal and health professional attitudes to palliative and end-of-life care. International partnerships are valuable to achieve these goals, particularly in education and research, but leadership and health systems stewardship within LMICs are critical factors that will drive and implement change. PMID:26578612
Palliative care tests the general practitioner's generalist skills. The work is not easy. We are trying to control symptoms that progress, feeling at times like the driver of a car with no brakes. It can evoke emotions of disturbing intensity. However, it is intensely rewarding work as well. The privilege of sharing life's journey with a patient, helping to enhance his or her quality of life, is one open to very few in our society. It is a privilege we should eagerly accept, as we are invited to stand with our patients facing their final challenge. PMID:7520231
Marston, Joan M
The concept of "ubuntu," a Nguni word, is found in many southern African cultures and means that we are part of all humanity and we are who we are through our interconnectedness with others. Children with life-limiting conditions often become isolated and take on a new identity in the eyes of others, linked to their illness and treatment. Terms that are used can dehumanize the child. The concept of ubuntu can help the child, the family, and the community to ensure the child remains connected to society. Programs providing palliative care for children often say they feel isolated; ubuntu principles are relevant to effective network development. PMID:26166185
Taylor, Vanessa; Ashelford, Sarah
Depression in patients receiving palliative and end-of-life care is difficult to distinguish from grief and sadness. However, there are some important distinctions and it is a clinical condition that is treatable and should not be considered a necessary or normal part of the dying process. This article examines the nature of depression and describes the stress vulnerability model of depression, linking it to recent developments in the neurobiology of depression. It also discusses how to distinguish depression from other symptoms that patients may be experiencing. PMID:19093358
Sweet, Lisa; Adamis, Dimitrios; Meagher, David; Davis, Daniel; Currow, David; Bush, Shirley H.; Barnes, Christopher; Hartwick, Michael; Agar, Meera; Simon, Jessica; Breitbart, William; MacDonald, Neil; Lawlor, Peter G.
Context Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. Objectives Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. Methods Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. Results Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. Conclusion Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. PMID:24388124
Background In the vast state of Queensland, Australia, access to specialist paediatric services are only available in the capital city of Brisbane, and are limited in regional and remote locations. During home-based palliative care, it is not always desirable or practical to move a patient to attend appointments, and so access to care may be even further limited. To address these problems, at the Royal Children’s Hospital (RCH) in Brisbane, a Home Telehealth Program (HTP) has been successfully established to provide palliative care consultations to families throughout Queensland. Methods A cost minimisation analysis was undertaken to compare the actual costs of the HTP consultations, with the estimated potential costs associated with face-to face-consultations occurring by either i) hospital based consultations in the outpatients department at the RCH, or ii) home visits from the Paediatric Palliative Care Service. The analysis was undertaken from the perspective of the Children’s Health Service. The analysis was based on data from 95 home video consultations which occurred over a two year period, and included costs associated with projected: clinician time and travel; costs reimbursed to families for travel through the Patients Travel Subsidy (PTS) scheme; hospital outpatient clinic costs, project co-ordination and equipment and infrastructure costs. The mean costs per consultation were calculated for each approach. Results Air travel (n?=?24) significantly affected the results. The mean cost of the HTP intervention was $294 and required no travel. The estimated mean cost per consultation in the hospital outpatient department was $748. The mean cost of home visits per consultation was $1214. Video consultation in the home is the most economical method of providing a consultation. The largest costs avoided to the health service are those associated with clinician time required for travel and the PTS scheme. Conclusion While face-to-face consultations are the gold standard of care, for families located at a distance from the hospital, video consultation in the home presents an effective and cost efficient method to deliver a consultation. Additionally video consultation in the home ensures equity of access to services and minimum disruption to hospital based palliative care teams. PMID:25069399
The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a ‘consolidation mode’. It is only a matter of time before the ‘aam admi’ has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the ‘Palliative Care Policy’ by the Government of Kerala are commendable milestones. We are today having more of ‘silver linings’ and less of ‘dark clouds’. PMID:20606849
Blank, Arthur; Simpson, Janice; Persaud, Judy; Huvane, Bernadette; McAllen, Susan; Davitt, Michelle; McHugh, Marlene; Hutcheson, Allen; Karakas, Serife; Higgins, Philip; Selwyn, Peter
The Palliative Care Service at Montefiore Medical Center (MMC) established a pilot project in the emergency department (ED) to identify chronically ill older adults in need of palliative care, homecare, and hospice services and to link such patients with these services. Two advance practice nurses conducted consultations on elderly patients who were found to have one or more “palliative care triggers” on initial screening. A standardized medical record abstraction form was developed. Service utilization and survival were evaluated using the Clinical Information Systems of MMC. Activity of daily living items were developed from the Outcome and Assessment Information Set and the Palliative Care Performance Scale (PPS). Risk factors for hospitalization and use of the ED were taken from the SIGNET model risk screening tool. Physical and emotional symptoms were evaluated using the 28-item Memorial Symptom Assessment Scale short form. Preliminary outcomes and characteristics are presented for 291 patients who completed the intake needs assessment questionnaire. Almost one third (30.9%) of the study cohort died during the project period. Most of the deaths occurred beyond the medical center (7.7% died in the medical center and 23.3% outside the medical center). Thirty percent of patients who died were enrolled on a hospice. Survival time was predicted by the presence of dyspnea, clinician prediction of death on the current hospitalization, psychosocial distress, and PPS scores. Chronically ill patients visiting an urban community ED had complex medical and psychosocial problems with limited support systems and homecare services. Significant proportions of such patients can be expected to have limited likelihood of survival. The presence of palliative homecare and hospice outreach services in the ED in urban community hospitals may provide an effective strategy for linkage of elderly patients at the end of life with otherwise underutilized services. PMID:18363108
...for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey...76053 and allowed 60-days for public comment. No...if received within 30 days of the date of this publication...Pediatric Palliative Care Campaign Pilot...
van Gurp, Jelle; van Selm, Martine; Vissers, Kris; van Leeuwen, Evert; Hasselaar, Jeroen
Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists. Methods This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Results The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients’ daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief. Conclusions Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice. PMID:25902263
Viney, Linda L.; And Others
Compared palliative care staff with staff from burn and neonatal units and with mature age general nursing trainees at end of training. Found that palliative care staff expressed better quality of life, in terms of significantly less anxiety and depression, as well as more good feelings than other staff groups. (Author/NB)
Cagle, John G.; Bolte, Sage
Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…
McWhinney, I R; Bass, M J; Orr, V
OBJECTIVE: To identify factors associated with the location of death (home or hospital) of patients referred to a palliative care home support team. DESIGN: Retrospective case-control chart review. SETTING: Palliative care inpatient unit with a home support team in a large chronic care hospital. SUBJECTS: All 75 patients receiving services from the home support team who died at home between June 1988 and January 1990 and 75 randomly selected patients receiving the same services who died in hospital. OUTCOME MEASURES: Place of death (home or hospital). RESULTS: Of the 267 patients referred to the palliative care home support team during the study period 75 (28.1%) died at home. Factors significantly associated with dying at home were the patient's preference for dying at home recorded at the time of the initial assessment (p < 0.001), a family member other than the spouse involved in the patient's care (p = 0.021) and the use of private shift nursing (p < 0.001). The patients who died in hospital were more likely than the other patients to have had no home visits from the palliative care team after the initial assessment (p = 0.04). The patient's preference for dying at home was not met if the caregiver could not cope or if symptoms were uncontrolled. The patient's preference for dying in hospital was not met if his or her condition deteriorated rapidly or if the patient died suddenly. CONCLUSIONS: Patients' preference as to place of death, level of caregiver support and entitlement to private shift nursing were significantly associated with patients' dying at home. The determination of these factors should be part of every palliative care assessment. Patients and their families should be informed about available home support services. PMID:7530164
Cheng, Jennifer; Vollenweider, Daniela; Galusca, Dragos; Smith, Thomas J.; Pronovost, Peter J.
Abstract Background: Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes. Methods: We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms “palliative care” and “intensive care unit” were mapped to MeSH subject headings and “exploded.” We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies. Results: Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention. Conclusions: Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality. PMID:24517300
Fekri, Omid; Amuah, Joseph Emmanuel; Herasimovich, Viachaslau; Chaudhary, Zeerak; Leeb, Kira; Gurevich, Yana
Objectives This study examines palliative care (PC) coding practices since the introduction of a national coding standard and assesses a potential association with hospital standardised mortality ratio (HSMR) results. Setting Acute-care hospitals in Canada. Participants ?16 million hospital discharges recorded in Canadian Institute for Health Information (CIHI)'s Discharge Abstract Database from April 2006 to March 2013. Primary and secondary outcome measures In-hospital mortality, patient characteristics and service utilisation among all hospitalisations, HSMR cases and palliative patients. Methods We assessed all separations in the Discharge Abstract Database between fiscal years 2006–2007 and 2012–2013 for PC cases at national, provincial and facility levels. In-hospital mortality was measured among all hospitalisations (including HSMR cases) and palliative patients. We calculated a variant HSMR-PC that included PC cases. Results There was an increase in the frequency of PC coding over the study period (from 0.78% to 1.12% of all separations), and year-over-year improvement in adherence to PC coding guidelines. Characteristics and resource utilisation of PC patients remained stable within provinces. Crude mortality among HSMR cases declined from 8.7% to 7.3%. National HSMR declined by 22% during the study period, compared with a 17% decline in HSMR-PC. Provincial results for HSMR-PC are not significantly different from regular HSMR calculation. Conclusions The introduction of a national coding standard resulted in increased identification of palliative patients and services. Aside from PC coding practices, we note numerous independent drivers of improving HSMR results, notably, a significant reduction of in-hospital mortality, and increase in admissions accompanied by a greater number of coded comorbidities. While PC impacts the HSMR indicator, its influence remains modest. PMID:26597865
Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas
The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested. PMID:25628769
Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas
The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested. PMID:25628769
Moss, Alvin H.; Cohen, Lewis M.; Fischer, Michael J.; Germain, Michael J.; Jassal, S. Vanita; Perl, Jeffrey; Weiner, Daniel E.; Mehrotra, Rajnish
As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients’ informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. PMID:25104274
Background Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. Methods The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items’ content validity, and (2) quantitative data collection (n?=?285 patients) using the POS and the Spirit 8 to assess construct validity. Results (1) Peace was interpreted according to the themes ‘perception of self and world’, ‘relationship to others’, ‘spiritual beliefs’ and ‘health and healthcare’. Life worthwhile was interpreted in relation to ‘perception of self and world’, ‘relationship to others’ and ‘identity’. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r?=?0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r?=?0.18) (both p?0.001). Correlations with Spirit 8 items were weak to moderate. Conclusions Findings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population. PMID:23758738
Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim
Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412
The aim of this article is to reflect upon the competencies required to alleviate suffering in palliative care. The knowledge to prudently and wisely act in a situation involving human relationships can be defined in terms of practical abilities and contextual skills. In the setting of the care of the very ill and dying, practical wisdom such as the carer's ability to meet the suffering person and to act with sensitivity and openness, becomes important. From this, learning to alleviate suffering emerges as receiving insight and wisdom from the suffering person's experience of suffering. This means that the testimony of suffering persons--what they have endured, given up and experienced--becomes as significant as theoretical and practical knowledge of suffering. The professional carer needs to learn how to be open to and interpret what the suffering person, living with suffering and death in the midst of life, can teach. PMID:12611321
The Perspective of Non-oncologist Physicians on Patients with Metastatic Cancer and Palliative Care (ALONE Study): A Study of the Palliative Care Working Committee of the Turkish Oncology Group (TOG).
Tanriverdi, Ozgur; Yavuzsen, Tugba; Akman, Tulay; Senler, Filiz Cay; Taskoylu, Burcu Yapar; Turhal, Serdar; Komurcu, Seref; Cehreli, Ruksan; Yaren, Arzu; Ozyilkan, Ozgur
The aim of our study was to determine the perspective of non-oncologist physicians regarding their attitudes and beliefs associated with palliative care for patients with metastatic cancer. The study was planned as a cross-sectional survey, and non-oncologist physicians were reached via e-mail and social networking sites. The first part of the questionnaire involved demographic properties, the second part inquired as to the perspectives of participants regarding metastatic disease, and the third part was used to determine beliefs and attitudes about palliative care. All of the questions were five-point Likert-type questions. A total of 1734 physicians completed the questionnaire. The majority of participants were general surgeons or internal medicine specialists (21 and 18%, respectively), were male (61%), were younger than 50 years of age (54%), worked in the town center (67%), had more than 11 years of professional experience (57%), and worked in a hospital without an active oncology service (86%). A total of 71% of participants identified all patients with metastatic cancer as being terminal stage, 62% were unaware of palliative care techniques, 64% did not know about common supportive care options, 59% were against hospice, and 63% had no opinion on resuscitation. We determined that non-oncologist physicians believed that all patients with metastatic cancer are at the terminal stage and that palliative/supportive care is the oncologist's task. These data suggest that non-oncologist physicians would benefit from additional graduate and postgraduate courses on these topics. PMID:25631655
Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. Conclusions The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants. This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention. Trial Registration German Clinical Trials Register DRKS00000694 PMID:21605381
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
Chao, Co-Shi Chantal
This article uses four examples to illustrate the recent rise of hospice palliative care as a universal value. These examples include the story of Dame Cecily Saunders, the pioneer of the palliative care movement in the U.K.; the national healthcare plan currently promoted by United States' President Obama; a survey on the topic of quality of death in 40 countries conducted by the Lien Foundation (Singapore); and the story of the Hospice Movement in Taiwan. This article further describes how hospice palliative care has changed the healthcare culture and presents the World Health Organization's definition of palliative care and the implications of this definition. Additionally, this article identifies the common palliative-care mistakes that have been made by the general public and by healthcare workers. Healthcare professionals must acquire essential relevant knowledge and skills in order to ensure that hospice palliative care addresses the needs of terminally ill patients adequately. Finally, the author describes a novel approach to instilling proper palliative-care concepts and practices that is entitled Life, Peace, Care, and Honor (LPCH or the "3344" concept). PMID:25854942
Estores, Irene M; Frye, Joyce
Conventional medicine is excellent at saving lives; however, it has little to offer to address the physical, mental, and emotional distress associated with life-threatening or life-limiting disease. An integrative approach to palliative care in acute care settings can meet this need by creating healing environments that support patients, families, and health care professionals. Mindful use of language enhances the innate healing response, improves communication, and invites patients and families to participate in their care. Staff should be offered access to skills training to cultivate compassion and mindful practice to enhance both patient and self-care. PMID:26333757
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
Boston, P H
This paper reports the results of a qualitative study to evaluate palliative care nurses' knowledge and experiences of providing culturally responsive palliative care within the cost constraints of a work-classification system. Multiple, in-depth interviews were conducted with 50 patients, their families, and health care providers. The study also employed observation techniques and documentary review of patient records. The study concludes that workload-classification measurement initiatives, while useful as a means of budgetary control, are often separate from and unrelated to the interests of cultural groups in palliative care populations. PMID:10512331
Ahia, Chad L.; Blais, Christopher M.
Background Primary palliative care consists of the palliative care competencies required of all primary care clinicians. Included in these competencies is the ability to assist patients and their families in establishing appropriate goals of care. Goals of care help patients and their families understand the patient's illness and its trajectory and facilitate medical care decisions consistent with the patient's values and goals. General internists and family medicine physicians in primary care are central to getting patients to articulate their goals of care and to have these documented in the medical record. Case Report Here we present the case of a 71-year-old male patient with chronic obstructive pulmonary disorder, congestive heart failure, and newly diagnosed Alzheimer dementia to model pertinent end-of-life care communication and discuss practical tips on how to incorporate it into practice. Conclusion General internists and family medicine practitioners in primary care are central to eliciting patients' goals of care and achieving optimal end-of-life outcomes for their patients. PMID:25598737
Weisenfluh, Sherri M; Csikai, Ellen L
In the past decade much growth has occurred in the numbers of patients and families served by hospices and palliative care services. Thus, not surprisingly, these services have also been subject to increasing regulation by governmental and accrediting entities. In order to stay up-to-date in this ever-changing environment and to continue to provide effective interventions, social workers must stay engaged in the professional community and continuing education. In this quantitative study, 1,169 practicing hospice and palliative care social workers provided information about their practice activities and agency characteristics, professional affiliations and certification, and ongoing educational needs. About one-half of respondents carried a caseload of 21-50 and were most engaged in communicating the psychosocial needs of the patient and family to other members of the team and assessing for grief and bereavement issues. The most important educational needs pertained to the psychological and social needs of patients and families and psychosocial interventions. Most were members of professional organizations and three-quarters were members of NASW. Although many were aware of the joint NASW-NHPCO social work hospice specialty certification, few held this certification yet. The results of this survey can be utilized in the design of continuing education programs and advocacy for programmatic and policy change within agencies and the industry. PMID:23438645
Desai, Geetha; Chaturvedi, Santosh K; Ramachandra, Srinivasa
Context: Complementary medicine like hypnotherapy is often used for pain and palliative care. Health professionals vary in views about hypnotherapy, its utility, value, and attitudes. Aims: To understand the opinions of health professionals on hypnotherapy. Settings and Design: A semi-qualitative method to survey opinions of the health professionals from various disciplines attending a programme on hypnotherapy was conducted. Materials and Methods: The survey form consisted of 32 statements about hypnosis and hypnotherapy. Participants were asked to indicate whether they agreed, disagreed, or were not sure about each statement. A qualitative feedback form was used to obtain further views about hypnotherapy. Statistical Analysis Used: Percentage, frequency distribution. Results: The sample consisted of 21 participants from various disciplines. Two-thirds of the participants gave correct responses to statements on dangerousness of hypnosis (90%), weak mind and hypnosis (86%), and hypnosis as therapy (81%). The participants gave incorrect responses about losing control in hypnosis (57%), hypnosis being in sleep (62%), and becoming dependent on hypnotist (62%). Participants were not sure if one could not hear the hypnotist one is not hypnotized (43%) about the responses on gender and hypnosis (38%), hypnosis leading to revealing secrets (23%). Conclusions: Despite patients using complementary medicine services, often health professionals are unaware of the issues associated with these services. These myths may interfere in using hypnotherapy as therapeutic tool in palliative care. It is important for health professionals to have an appropriate and evidence-based understanding about the complementary therapies including hypnotherapy. PMID:21976856
Borasio, Gian Domenico; Nickolay, Carla; Bender, Hans-Ulrich; von Lüttichau, Irene; Führer, Monika
Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness–Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children. PMID:24168349
Background There is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care professionals and professionals from organizations who provide training and education. Methods Five focus groups were brought together in Belgium, with a total of 29 participants, including members of the three categories mentioned above. They were analysed using a constant comparison method. Results The analysis revealed that undergraduate education and continuing medical education (CME) while in practice, is insufficient to prepare GPs for their palliative work. Workplace learning (WPL) through collaboration with specialized palliative home-care nurses seems to be a valuable alternative. Conclusions The effectiveness of undergraduate education might be enhanced by adding practical experience. Providers of continuing medical education should look to organize interactive, practice-based and interprofessional sessions. Therefore, teachers need to be trained to run small group discussions. In order to optimize workplace learning, health care professionals should be trained to monitor each other’s practice and to provide effective feedback. Further research is needed to clarify which aspects of interprofessional teamwork (e.g. professional hierarchy, agreements on tasks and responsibilities) influence the effectiveness of workplace learning. PMID:24552145
Background Depression in palliative care patients is important because of its intrinsic burden and association with elevated physical symptoms, reduced immunity and increased mortality risk. Identifying risk factors associated with depression can enable clinicians to more readily diagnose it, which is important since depression is treatable. The purpose of this cross-sectional study was to determine the prevalence of depressive symptoms and risk factors associated with them in a large sample of palliative home care patients. Methods The data come from interRAI Palliative Care assessments completed between 2006 and 2012. The sample (n?=?5144) consists of adults residing in Ontario (Canada), receiving home care services, classified as palliative, and not experiencing significant cognitive impairment. Logistic regression identified the risk factors associated with depressive symptoms. The dependent variable was the Depression Rating Scale (DRS) and the independent variables were functional indicators from the interRAI assessment and other variables identified in the literature. We examined the results of the complete case and multiple imputation analyses, and found them to be similar. Results The prevalence of depressive symptoms was 9.8%. The risk factors associated with depressive symptoms were (pooled estimates, multiple imputation): low life satisfaction (OR?=?3.01 [CI?=?2.37-3.82]), severe and moderate sleep disorders (2.56 [2.05-3.19] and 1.56 [1.18-2.06]), health instability (2.12 [1.42-3.18]), caregiver distress 2.01 [1.62-2.51]), daily pain (1.73 [1.35-2.22]), cognitive impairment (1.45 [1.13-1.87]), being female (1.37 [1.11-1.68]), and gastrointestinal symptoms (1.27 [1.03-1.55]). Life satisfaction mediated the effect of prognostic awareness on depressive symptoms. Conclusions The prevalence of depressive symptoms in our study was close to the median of 10-20% reported in the palliative care literature, suggesting they are present but by no means inevitable in palliative patients. Most of the factors associated with depressive symptoms in our study are amenable to clinical intervention and often targeted in palliative care programs. Designing interventions to address them can be challenging, however, requiring careful attention to patient preferences, the spectrum of comorbid conditions they face, and their social supports. Life satisfaction was one of the strongest factors associated with depressive symptoms in our study, and is likely to be among the most challenging to address. PMID:24636452
Kenner, C; Press, J; Ryan, D
Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801
Dennis, Kristopher; Linden, Kelly; Balboni, Tracy; Chow, Edward
Palliating symptoms of advanced and metastatic cancers are one of the most common indications for radiation therapy (RT), and the demand for palliative RT is increasing. Dedicated rapid access palliative RT programs improve access to care, and can deliver RT in a more efficient and evidence-based manner than standard RT programs. In this narrative review, we discuss the role of palliative RT in comprehensive cancer care, and challenges that have faced patients trying to access it. We describe how rapid access programs developed to address these challenges and provide an overview of dedicated programs worldwide. Finally, we show how these programs can serve as models for multidisciplinary care and education, and sources of exciting research opportunities in clinical care and advanced technologies. PMID:26271002
Kenner, C; Press, J; Ryan, D
Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801
Grassi, Luigi; Caruso, Rosangela; Sabato, Silvana; Massarenti, Sara; Nanni, Maria G.; the UniFe Psychiatry Working Group Coauthors
Psychiatric and psychosocial disorders among cancer patients have been reported as a major consequence of the disease and treatment. The problems in applying a pure psychiatric approach have determined the need for structuring more defined methods, including screening for distress and emotional symptoms and a more specific psychosocial assessment, to warrant proper care to cancer patients with psychosocial problems. This review examines some of the most significant issues related to these two steps, screening and assessment of psychosocial morbidity in cancer and palliative care. With regard to this, the many different variables, such as the factors affecting individual vulnerability (e.g., life events, chronic stress and allostatic load, well-being, and health attitudes) and the psychosocial correlates of medical disease (e.g., psychiatric disturbances, psychological symptoms, illness behavior, and quality of life) which are possibly implicated not only in “classical” psychiatric disorders but more broadly in psychosocial suffering. Multidimensional tools [e.g., and specific psychosocially oriented interview (e.g., the Diagnostic Criteria for Psychosomatic Research)] represent a way to screen for and assess emotional distress, anxiety and depression, maladaptive coping, dysfunctional attachment, as well as other significant psychosocial dimensions secondary to cancer, such as demoralization and health anxiety. Cross-cultural issues, such as language, ethnicity, race, and religion, are also discussed as possible factors influencing the patients and families perception of illness, coping mechanisms, psychological response to a cancer diagnosis. PMID:25709584
Created in 2010, the French National Observatory on End of Life Care is responsible for drawing up an overview of existing knowledge in order to gain a better understanding of the conditions of end of life. It must contribute to the dissemination of the palliative culture and the development of training and research. Its work must also throw light on the choices made in the area of health policies. Nursing expertise is therefore crucial to the fulfilment of these objectives. PMID:22003797
Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815 PMID:22050863
... are chronically ill, recovering from surgery, or disabled. Home care services include Personal care, such as help with bathing, ... insurance will help cover the cost of certain home care services.
Appelin, Gunilla; Brobäck, Gunilla; Berterö, Carina
The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation. PMID:16310139
Norton, Sally A; Metzger, Maureen; DeLuca, Jane; Alexander, Stewart C; Quill, Timothy E; Gramling, Robert
Prognostic communication is a primary component of goals of care conversations in palliative care (PC) practice. Little is known about these conversations in the natural setting. This study's aim was to describe the processes of prognostic communication in PC goals of care consultations. Using line-by-line qualitative analysis, we examined prognostic conversation in 66 audio-taped PC consultations. We identified five processes by which clinicians link prognoses, values, and goals of care: (1) signposting the crossroads; (2) closing off a goal; (3) clarifying current path; (4) linking paths and patients' values; and (5) choosing among paths. The findings add to our understanding of PC consultation by describing how prognoses link with patients' values and choices in goals of care conversations. PMID:24114740
Crocker, Joanna C; Beecham, Emma; Kelly, Paula; Dinsdale, Andrew P; Hemsley, June; Jones, Louise
Background: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. Aim: To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents’ experiences of advance care planning (ACP). Design: We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service’s clinical database. Setting: Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N?=?519) or had died 6–10?months previously having received care from the service (Group B; N?=?73). Results: Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p?0.0005) were invited. Family–clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13–14.00); p?0.0005). Qualitative findings also indicated that clinicians’ perceptions of families’ wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation. Conclusion: We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies. PMID:25519146
Van Hyfte, Gregory J; Kozak, Leila E; Lepore, Michael
This research assesses complementary and alternative medicine (CAM) use and administration for patients and family caregivers in Illinois hospice and palliative care organizations. An online survey was administered to a sample of 108 contacts of Illinois organizations listed in the National Hospice and Palliative Care Organization website, and 90.3% of the responding organizations offered some type of CAM. The top 5 most frequently offered CAM modalities to patients were pet therapy (64.5%), music therapy (61.3%), massage therapy (54.8%), art therapy (29.0%), and energy therapies (25.8%); these were the same top 5 offered to families but with different frequencies. Findings regarding utilization, administration, financing, and spiritual/cultural competency are discussed with policy recommendations for data collection, administrative improvements, and integration of CAM providers into service delivery. PMID:23943631
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. PMID:21805890
Lecouturier, J; Jacoby, A; Bradshaw, C; Lovel, T; Eccles, M
This paper reports the substantive findings of a study that examined the feasibility of using postal questionnaires to assess the satisfaction of lay caregivers with the care received in the community by those dying of cancer. The focus of the analysis was the quality of information provided by health professionals, health services used in the final year of the dying person's life and the lay carer's views about the quality of these services. The study was a retrospective survey of lay carers identified from death certificates over a 9-month period. Of the 355 people contacted, 156 completed the questionnaires, a 44% response rate. The results of the survey indicate that information provision was deemed unsatisfactory by a large proportion of respondents, and that dissatisfaction with care received from hospital, the district nursing service and the general practitioner was common. Levels of satisfaction with care were clearly related to a range of service factors. Our survey also highlighted clear differences in the perceived quality of specialist and generic services for those dying of cancer. A comparison of the findings from this postal study with those reported in earlier retrospective interview surveys of lay carers suggests that the use of the postal questionnaire is a valid and cost-effective approach for assessing quality of care. The data provide baseline information against which improvements in the quality of care can be measured. PMID:10659097
Carter, Gregory T; Flanagan, Aaron M; Earleywine, Mitchell; Abrams, Donald I; Aggarwal, Sunil K; Grinspoon, Lester
Unlike hospice, long-term drug safety is an important issue in palliative medicine. Opioids may produce significant morbidity. Cannabis is a safer alternative with broad applicability for palliative care. Yet the Drug Enforcement Agency (DEA) classifies cannabis as Schedule I (dangerous, without medical uses). Dronabinol, a Schedule III prescription drug, is 100% tetrahydrocannabinol (THC), the most psychoactive ingredient in cannabis. Cannabis contains 20% THC or less but has other therapeutic cannabinoids, all working together to produce therapeutic effects. As palliative medicine grows, so does the need to reclassify cannabis. This article provides an evidence-based overview and comparison of cannabis and opioids. Using this foundation, an argument is made for reclassifying cannabis in the context of improving palliative care and reducing opioid-related morbidity. PMID:21444324
Janssens, A; Teugels, L; Kohl, S; Michielsen, T; van Meerbeeck, J P
Early introduction of palliative care in the management of patients with metastatic lung cancer is recommended since it improves quality of life and improves survival rates. In many hospitals the focus of palliative teams is often on terminal care due to limited resources. How is Early palliative care (EPC) in this setting implemented in daily oncologic care? It seems obvious that thoracic oncologists will have to become involved in EPC for lung cancer patients. In this review we want to determine the assignments for the thoracic oncologist in EPC and to give some practical tools how we started EPC in collaboration with the palliative team. PMID:26341958
Younge, Noelle; Smith, P. Brian; Goldberg, Ronald N.; Brandon, Debra H.; Simmons, Catherine; Cotten, C. Michael; Bidegain, Margarita
Objective Evaluate changes in end-of-life care following initiation of a Palliative Care Program in a neonatal intensive care unit. Study Design Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan, and staff education. Result 82 infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar [88% vs. 81%; p=0.17], while benzodiazepines use increased in Era 2 [26% vs. 43%; p=0.03]. Withdrawal of life support (73% vs. 63%; p=0.17) and do-not-resuscitate orders (46% vs. 53%; p=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared to infants without activated orders (n=47). Conclusion End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication. PMID:25341195
The Palliative care has an expanding future in the heart of health care in New Zealand Diploma in Health Sciences (Palliative Care) This qualification consists of four papers, HLTH401: Health and Health Systems, HLTH450: Palliative Care: Advanced theory and practice, Students who have the Whitiriea
Mansky, Patrick J; Wallerstedt, Dawn B
Complementary and alternative medicine (CAM) use among cancer patients varies according to geographical area, gender, and disease diagnosis. The prevalence of CAM use among cancer patients in the United States has been estimated to be between 7% and 54%. Most cancer patients use CAM with the hope of boosting the immune system, relieving pain, and controlling side effects related to disease or treatment. Only a minority of patients include CAM in the treatment plan with curative intent. This review article focuses on practices belonging to the CAM domains of mind-body medicine, CAM botanicals, manipulative practices, and energy medicine, because they are widely used as complementary approaches to palliative cancer care and cancer symptom management. In the area of cancer symptom management, auricular acupuncture, therapeutic touch, and hypnosis may help to manage cancer pain. Music therapy, massage, and hypnosis may have an effect on anxiety, and both acupuncture and massage may have a therapeutic role in cancer fatigue. Acupuncture and selected botanicals may reduce chemotherapy-induced nausea and emesis, and hypnosis and guided imagery may be beneficial in anticipatory nausea and vomiting. Transcendental meditation and the mindfulness-based stress reduction can play a role in the management of depressed mood and anxiety. Black cohosh and phytoestrogen-rich foods may reduce vasomotor symptoms in postmenopausal women. Most CAM approaches to the treatment of cancer are safe when used by a CAM practitioner experienced in the treatment of cancer patients. The potential for many commonly used botanical to interact with prescription drugs continues to be a concern. Botanicals should be used with caution by cancer patients and only under the guidance of an oncologist knowledgeable in their use. PMID:17034678
Fonseca, João Vicente César; Rebelo, Teresa
The purpose was to identify needs for nursing care of caregiver of the person in the terminal stage and nursing interventions, using a systematic review of the literature. A research in EBSCO and ProQuest and sought Full Text scientific articles, published between 1998 and 2008, using the following keywords: "Palliative care", "Family", "Nursing" and "Needs" was made. The method PI[C]OD was used to select 14 items of total 77. The care needs the person in the terminal stage are: communication, relationship of trust and security, recognition and operationalization of desires; preparation for mourning; needs for information, training, involvement in care, emotional needs, spiritual needs and resting needs. It was concluded that the family has different needs that require personal intervention of the nurse, through the establishment of a trust relationship. PMID:21468507
Tosello, Barthélémy; Dany, Lionel; Bétrémieux, Pierre; Le Coz, Pierre; Auquier, Pascal; Gire, Catherine; Einaudi, Marie-Ange
Background When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropiate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality. Methods We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD). Results Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally. Conclusions Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field. PMID:25978417
Eskander, Ramez N.; Osann, Kathryn; Dickson, Elizabeth; Holman, Laura L.; Rauh-Hain, J. Alejandro; Spoozak, Lori; Wu, Eijean; Krill, Lauren; Fader, Amanda Nickles; Tewari, Krishnansu S.
Objective Palliative care is recognized as an important component of oncologic care. We sought to assess the quality/quantity of palliative care education in gynecologic oncology fellowship. Methods A self-administered on-line questionnaire was distributed to current gynecologic oncology fellow and candidate members during the 2013 academic year. Descriptive statistics, bivariate and multivariate analyses were performed. Results Of 201 fellow and candidate members, 74.1% (n = 149) responded. Respondents were primarily women (75%) and white (76%). Only 11% of respondents participated in a palliative care rotation. Respondents rated the overall quality of teaching received on management of ovarian cancer significantly higher than management of patients at end of life (EOL), independent of level of training (8.25 vs. 6.23; p < 0.0005). Forty-six percent reported never being observed discussing transition of care from curative to palliative with a patient, and 56% never received feedback about technique regarding discussions on EOL care. When asked to recall their most recent patient who had died, 83% reported enrollment in hospice within 4 weeks of death. Fellows reporting higher quality EOL education were significantly more likely to feel prepared to care for patients at EOL (p < 0.0005). Mean ranking of preparedness increased with the number of times a fellow reported discussing changing goals from curative to palliative and the number of times he/she received feedback from an attending (p < 0.0005). Conclusions Gynecologic oncology fellow/candidate members reported insufficient palliative care education. Those respondents reporting higher quality EOL training felt more prepared to care for dying patients and to address complications commonly encountered in this setting. PMID:24887355
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
This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care. PMID:26619237
Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs. PMID:23122255
Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth
Competence can be seen as a prerequisite for high quality nursing in clinical settings. Few research studies have focused on nurses' core competencies in clinical palliative care and few measurement tools have been developed to explore these core competencies. The purpose of this study was to test and validate the nurses' core competence in palliative care (NCPC) instrument. A total of 122 clinical nurse specialists who had completed a postbachelor program in palliative care at two university colleges in Norway answered the questionnaire. The initial analysis, with structural equation modelling, was run in Mplus 7. A modified confirmatory factor analysis revealed the following five domains: knowledge in symptom management, systematic use of the Edmonton symptom assessment system, teamwork skills, interpersonal skills, and life closure skills. The actual instrument needs to be tested in a practice setting with a larger sample to confirm its usefulness. The instrument has the potential to be used to refine clinical competence in palliative care and be used for the training and evaluation of palliative care nurses. PMID:25132989
Kusano, Aaron S.; Kenworthy-Heinige, Tawni; Thomas, Charles R.
Purpose: Physicians caring for patients with cancer frequently encounter individuals who will die as a result of their disease. The primary aim of this study was to examine the frequency and nature of bereavement practices among cancer care and palliative care physicians in the Pacific Northwest United States. Secondary aims included identification of factors and barriers associated with bereavement follow-up. Methods: An institutional review board (IRB) –approved, anonymous online survey of cancer specialists and palliative care physicians in Alaska, Washington, Oregon, Idaho, Montana, and Wyoming was performed in fall 2010. Potential participants were identified through membership in national professional organizations. Summary statistics and logistic regression methods were used to examine frequency and predictors of bereavement practices. Results: A total of 194 (22.7%) of 856 physicians participated in the online survey, with 164 (19.1%) meeting study inclusion criteria. Overall, 70% of respondents reported always or usually making a telephone call to families, sending a condolence letter, or attending a funeral service after a patient's death. The most common perceived barriers to bereavement follow-up were lack of time and uncertainty of which family member to contact. Sixty-nine percent of respondents did not feel that they had received adequate training on bereavement follow-up during postgraduate training. Conclusion: Although a significant portion of respondents engaged in some form of bereavement follow-up, the majority felt inadequately trained in these activities. Efforts to identify available resources and address bereavement activities in postgraduate training may contribute to improved multidisciplinary treatment of patients with cancer and their families. PMID:23277763
Perez-Hoyos, Santiago; Agra-Varela, Yolanda
Abstract Background Primary care physicians (PCPs) have a major responsibility in the management of palliative patients. Online palliative care (PC) education has not been shown to have a clinical impact on patients that is equal or different to traditional training. Objective This study tested the clinical effectiveness of online PC education of physicians through impact on symptom control, quality of life (QOL), caregiver satisfaction, and knowledge-attitude of physicians at 18 months of the intervention. Methods We conducted a randomized clinical trial. Subjects were 169 physicians randomly assigned to receive the online model or traditional training. Consecutive patients with advanced cancer requiring PC were included. Physicians and patients completed the Palliative Care Outcome Scale (POS), and patients the Brief Pain Inventory (BPI) and the Rotterdam Symptom Checklist (RSCL) twice, 7 to 10 days apart. Caregivers completed the SERVQUAL. Physicians' level of knowledge-attitude was measured at 18 months. Results Sixty-seven physicians enrolled 117 patients. The intervention group had reduced scores for pain, symptoms, and family anxiety. The global RSCL scale showed a difference between groups. There was no significant difference in the questionnaires used. Caregiver satisfaction was comparable between groups. Physicians in the intervention group significantly increased their knowledge without any differences in attitude. Online training was completed by 86.6% in the intervention group, whereas 13.4% in the control group accessed traditional training. Conclusions Participation in an online PC education program by PCPs improved patient scores for some symptoms and family anxiety on the POS and also showed improved global QOL. Significant differences were found in physicians' knowledge at short and long term. PMID:23987657
Garcia-Schinzari, Nathália Rodrigues; Santos, Franklin Santana
Objective: To describe what has been published in Brazilian scientific literature regarding pediatric palliative care. Data sources: Bibliographic review with a descriptive approach. In LILACS and SciELO databases, the descriptors "palliative care", "child", "pediatrics", "terminal illness" and "death" were sought, from January 2002 to December 2011. The eight selected articles were analyzed according to year of publication, type of study, data collected, target population, pathology, professionals involved, types of care and main findings. Data synthesis: Regarding the year of publication, there was an increase in the number of publications related to pediatric palliative care. Regarding the type of study, four articles were literature reviews and four were qualitative researches. Data was collected mainly by semi-structured interviews. The participants of the majority of the studies were children's relatives and health professionals. The main pathology addressed was cancer and the nurses were the most frequently cited professionals. The types of care provided were related to physical aspects, general care and psychological, social and spiritual aspects (less emphasis). The main findings were: little emphasis on the children's needs, the importance of including the family in the care provided and the lack of preparation of the health team. Conclusions: Despite the difficulties and the challenges in establishing pediatric palliative care, many articles brought important considerations for the development of this practice in the country. PMID:24676197
Chevaucherie, Isabelle; Fernandes, Martine; Lariche, Stéphanie; Mussault, Pascale
The mission of the mobile pain and palliative care team is to improve the quality of care and comfort of patients. At Longjumeau general hospital the nurse-healthcare assistant partnership within this team enables the patient to benefit from the caregivers' two-way perspective, while allowing the professionals to share knowledge and to be stronger in the face of suffering. PMID:26144825
Patients receiving palliative care can be cared for at home or at hospital by different structures. The way the networks operate is illustrated by the transcription of a telephone conversation between the wife of a patient and a member of the coordination team of the network Quiétude. PMID:26567070
Supiano, Katherine P.; Berry, Patricia H.
Research suggests that better educational preparation is necessary to assure that health care social workers have the competencies essential for high quality interdisciplinary palliative care practice. This study is a qualitative evaluation of those elements contributing to competence and confidence in interdisciplinary practice skills of second…
Background An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care. Methods Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole. Results Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death. Conclusions Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions. PMID:21658253
Lau, Brandyn D.; Aslakson, Rebecca A.; Wilson, Renee F.; Fawole, Oluwakemi A.; Apostol, Colleen C.; Martinez, Kathryn A.; Vollenweider, Daniela; Bass, Eric B.; Dy, Sydney E. Morss
Background The effectiveness for improving the outcomes across palliative care domains remains unclear. We conducted a systematic review of different types of quality improvement interventions relevant to palliative care. Methods We searched PubMed, CINAHL, PsycINFO, and Cochrane for relevant articles published between 2000 and 2011. Results A total of 10 randomized controlled trials and 7 nonrandomized controlled trials were included. Of the 5 studies using relay of clinical information, 1 reported significant improvement in patient quality of life. Of the 5 studies targeting education and self-management, 4 found significant improvements in quality of life or patient symptoms. Conclusion A minority of quality improvement interventions have succeeded in improving the quality of palliative care delivery. More studies are needed on specific quality improvement types, including organizational change and multiple types of interventions. PMID:23532404
Bakitas, Marie A; Lyons, Kathleen Doyle; Dixon, Jane; Ahles, Tim A
Research on palliative care presents some unique sampling challenges. The purpose of this paper is to articulate the sampling challenges that palliative care researchers face during phases of study design, conduct, and the reporting of results. Challenges include identifying a target population, avoiding selection bias in the face of clinician and patient denial of serious illness, developing eligibility criteria for a seriously ill population, minimizing high patient refusals due to illness, and accurate reporting of all screened and eligible participants. These challenges are explored within the context of a randomized clinical trial testing a palliative care intervention. Suggestions for improving scientific rigor in sampling design include 1) defining a target population that is consistent with research goals; 2) identifying eligibility criteria that are objective and understandable to clinicians to yield the desired sample; and 3) reporting results about the target population, sample eligibility/exclusions, and participation using standardized criteria. PMID:16563321
Background According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. PMID:23866928
Noseda, C; Mialet-Marty, T; Basquin, A; Letourneur, I; Bertorello, I; Charlot, F; Le Bouar, G; Bétrémieux, P
We analyzed 16 cases of hypoplastic left heart syndrome (HLHS) submitted to the multidisciplinary center at Rennes Teaching Hospital from 2006 to 2010 for prenatal diagnosis. The information given to parents at the moment of choice is capital for them to make their own decision: in our team the real choice for parents stands between termination of pregnancy (TOP) and palliative care (PC). The Norwood procedure is rarely proposed to parents in France and it is performed in very few centers. Heart transplant is never proposed nor done at this age. The objectives of our study were to understand the reasons for the choice of PC, take stock of our experience of PC, and relate the benefits but also the disadvantages of PC. Over the 16 patients whose fetus had HLHS, 9 requested TOP, while 7 others wanted to live their pregnancy and meet their child at birth, therefore requesting neonatal PC. No family asked for the Norwood procedure. Four children died within the first days (D1, D2, D4, D9), 2 others died at 5 and 7 months, 1 child was operated on for coarctation of the aorta (unknown before birth) and is still alive 1.5 years later. Maternal motivations to continue the pregnancy were clearly described for 2 of the 7 cases: religious prohibition of TOP in 1 case, negative experiences of previous abortions in the second case. In another case, the parents hesitated between PC and Norwood surgery. For the other women, the reasons were less clearly expressed. In our series, HLHS is the first indication for PC from prenatal diagnosis (7/16 cases in the same period) while in the literature, heart diseases are the second cause of TOP after the neurological causes. The overrepresentation of this pathology in the families who opt for PC may be due to the unconscious image that both professionals and families have of HLHS: severity of an inevitably fatal disease, rapid postnatal death, and no suffering. Our study may change this view: a child was in fact carrying a curable defect which was discovered 12 days after birth, 2 children died at 5 and 7 months, and 5 of 6 children had major analgesics at the end of life. Nevertheless, the families were supported and followed by the PC network, except 1 who ruptured all contacts in a context of presumed intense suffering, but the other 6 do not regret their choice despite the difficulties. PMID:22397767
Rawlinson, FM; Gwyther, L; Kiyange, F; Luyirika, E; Meiring, M; Downing, J
The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation. PMID:25624873
Viney, Linda L.; And Others
Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…
Thiemann, Pia; Quince, Thelma; Benson, John; Wood, Diana; Barclay, Stephen
and graduate counselors about death. J Med Educ 1986;61:923-925. 6. Faull C, Woof R. Palliative care. Oxford: Oxford University Press, 2002. 7. General Medical Council. Tomorrow's doctor, 2nd ed. London: General Medical Council, 2003. 8. Field D, Wee B... . Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools 2000–2001. Med Educ 2002;36:561-567. 9. Neimeyer RA. Death anxiety handbook: Research, instruments and application. Bristol, UK: Taylor and Francis, 1994. M...
Hughes, Lloyd D
This article aims to outline the principles that underpin good practice in the assessment and management of pain syndromes in older patients with advanced, life-limiting illnesses. Older patients receiving palliative care can be nursed in a variety of settings, including acute hospitals and in the community either at home, in nursing homes or hospices. An understanding of pain and approaches to treating it will help ensure that nurses in different clinical settings are able to support patients receiving palliative care and their families. PMID:22900393
Allen, Ruth; Moeke-Maxwell, Tess; Gardiner, Clare; Robinson, Jackie
Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/wh?nau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and wh?nau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. PMID:25680378
Khandelwal, Nita; Kross, Erin K.; Engelberg, Ruth A.; Coe, Norma B.; Long, Ann C.; Curtis, J. Randall
Objective We conducted a systematic review to answer three questions: 1) Do advance care planning and palliative care interventions lead to a reduction in ICU admissions for adult patients with life-limiting illnesses? 2) Do these interventions reduce ICU length of stay? and 3) Is it possible to provide estimates of the magnitude of these effects? Data Sources We searched MEDLINE, EMBASE, Cochrane Controlled Clinical Trials, and Cumulative Index to Nursing and Allied Health Literature databases from 1995 through March 2014. Study Selection We included studies that reported controlled trials (randomized and nonrandomized) assessing the impact of advance care planning and both primary and specialty palliative care interventions on ICU admissions and ICU length of stay for critically ill adult patients. Data Extraction Nine randomized controlled trials and 13 nonrandomized controlled trials were selected from 216 references. Data Synthesis Nineteen of these studies were used to provide estimates of the magnitude of effect of palliative care interventions and advance care planning on ICU admission and length of stay. Three studies reporting on ICU admissions suggest that advance care planning interventions reduce the relative risk of ICU admission for patients at high risk of death by 37% (sd, 23%). For trials evaluating palliative care interventions in the ICU setting, we found a 26% (sd, 23%) relative risk reduction in length of stay with these interventions. Conclusions Despite wide variation in study type and quality, patients who received advance care planning or palliative care interventions consistently showed a pattern toward decreased ICU admissions and reduced ICU length of stay. Although sds are wide and study quality varied, the magnitude of the effect is possible to estimate and provides a basis for modeling impact on healthcare costs. PMID:25574794
Chaturvedi, Santosh K.; Loiselle, Carmen G.; Chandra, Prabha S.
Handling collusion among patients and family members is one of the biggest challenges that palliative care professionals face across cultures. Communication with patients and relatives can be complex particularly in filial cultures where families play an important role in illness management and treatment decision-making. Collusion comes in different forms and intensity and is often not absolute. Some illness-related issues may be discussed with the patient, whereas others are left unspoken. Particularly in palliative care, the transition from curative to palliative treatment and discussion of death and dying are often topics involving collusion. Communication patterns may also be influenced by age, gender, age, and family role. This paper outlines different types of collusion and how collusion manifests in Indian and Western cultures. In addition, promising avenues for future research are presented. PMID:20606848
de Vries, K
Creativity plays an important part in all aspects of life. Although the nature of creativity is hypothesized in a variety of ways, there is no common agreement as to how or why it manifests. In the USA and UK, creative ability is often restricted by education, and nursing education programmes appear to be no exception. This article discusses the development of a weekend workshop programme for health professionals working with older people and in palliative care, using Alligood's (1991) hypotheses, that there are positive correlations between creativity, self-actualization and empathy. Actualization and creativity are closely related to self-care and there is evidence that 'selfishness' is an essential ingredient in the actualizing process. There is also evidence that an empathic relationship between health workers and their patients has a significant positive impact on interpersonal care processes. If the creative potential of nurses and carers can be enhanced through self-care, their ability to empathize may be increased. The focus of the workshops is on creative methods of self-care, using experiential exercises in relaxation, music, touch, massage and silence. Evaluation of the workshops revealed that the potential of using this method to develop care practices is worthy of investigation and development. PMID:11923753
Thorsteinsdottir, Bjorg; Cha, Stephen S.; Hanson, Gregory J.; Peterson, Stephanie M.; Rahman, Parvez A.; Naessens, James M.; Takahashi, Paul Y.
Abstract Background: Approximately 20% of seniors live with five or more chronic medical illnesses. Terminal stages of their lives are often characterized by repeated burdensome hospitalizations and advance care directives are insufficiently addressed. This study reports on the preliminary results of a Palliative Care Homebound Program (PCHP) at the Mayo Clinic in Rochester, Minnesota to service these vulnerable populations. Objective: The study objective was to evaluate inpatient hospital utilization and the adequacy of advance care planning in patients who receive home-based palliative care. Methods: This is a retrospective pilot cohort study of patients enrolled in the PCHP between September 2012 and March 2013. Two control patients were matched to each intervention patient by propensity scoring methods that factor in risk and prognosis. Primary outcomes were six-month hospital utilization including ER visits. Secondary outcomes evaluated advance care directive completion and overall mortality. Results: Patients enrolled in the PCHP group (n=54) were matched to 108 controls with an average age of 87 years. Ninety-two percent of controls and 33% of PCHP patients were admitted to the hospital at least once. The average number of hospital admissions was 1.36 per patient for controls versus 0.35 in the PCHP (p<0.001). Total hospital days were reduced by 5.13 days. There was no difference between rates of ER visits. Advanced care directive were completed more often in the intervention group (98%) as compared to controls (31%), with p<0.001. Goals of care discussions were held at least once for all patients in the PCHP group, compared to 41% in the controls. PMID:25375663
Kalanga, Noel; Keck, James W.; Wroe, Emily B.; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Beste, Jason A.; Tengatenga, Listern; Bazile, Junior
Introduction Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences. Methods Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the NPCP’s first 9 months; 2) structured interviews with patients and caregivers; 3) semi-structured interviews with key stakeholders. Results The NPCP enrolled 63 patients in its first 9 months. Frequent diagnoses were cancer (n?=?50, 79%) and HIV/AIDS (n?=?37 of 61, 61%). Nearly all (n?=?31, 84%) patients with HIV/AIDS were on antiretroviral therapy. Providers registered 112 patient encounters, including 22 (20%) home visits. Most (n?=?43, 68%) patients had documented pain at baseline, of whom 23 (53%) were treated with morphine. A majority (n?=?35, 56%) had ?1 follow-up encounter. Mean African Palliative Outcome Scale pain score decreased non-significantly between baseline and follow-up (3.0 vs. 2.7, p?=?0.5) for patients with baseline pain and complete pain assessment documentation. Providers referred 48 (76%) patients for psychosocial services, including community health worker support, socioeconomic assistance, or both. We interviewed 36 patients referred to the NPCP after the chart review period. Most had cancer (n?=?19, 53%) or HIV/AIDS (n?=?10, 28%). Patients frequently reported needing income (n?=?24, 67%) or food (n?=?22, 61%). Stakeholders cited a need to make integrated palliative care widely available. Conclusions We identified a high prevalence of pain and psychosocial needs among patients with serious chronic illnesses in rural Malawi. Early NPCP results suggest that comprehensive palliative care can be provided in rural Africa by integrating disease-modifying treatment and palliative care, linking hospital, clinic, and home-based services, and providing psychosocial support that includes socioeconomic assistance. PMID:25313997
Frist, William H; Presley, Martha K
There is a common misperception that palliative care is just another term for hospice care. Although it includes hospice, palliative care is also the long-term coordinated care of the chronically ill, which is delivered at a cost savings. Why does it matter that the average American understand what palliative care means? Because the evidence shows that U.S. patients near the end of life are spending exorbitant amounts of money on health care they do not want and the country cannot afford. To better understand why palliative care is an important issue in the current debate about health care reform, the authors first briefly review landmark legal cases in the area of end-of-life care. They then discuss the role of palliative care in conversations in the current health care climate and conclude by emphasizing the importance of integrating palliative care into the standard medical curriculum. The authors predict that palliative care will be accepted in the United States as a much-needed and desirable field of medicine. Getting there, however, will require a multifaceted approach including payment reform, encouraging an open conversation among the U.S. public, and training physicians to offer the best possible care and guidance until a patient's last breath. PMID:25551861
Schryer, Catherine; McDougall, Allan; Tait, Glendon R.; Lingard, Lorelei
This article investigates an emerging practice in palliative care: dignity therapy. Dignity therapy is a psychotherapeutic intervention that its proponents assert has clinically significant positive impacts on dying patients. Dignity therapy consists of a physician asking a patient a set of questions about his or her life and returning to the…
O'Connor, Margaret; Abbott, Jo-Anne; Recoche, Katrina
Drama is a promising means of delivering educational messages in palliative care. Research studies have found drama to be an effective means of delivering educational messages in other domains of learning, such as teaching health education to children and adults and engaging the general public in health policy development. This paper discusses the…
Freeman, Shannon; Heckman, George; Naus, Peter J.; Marston, Hannah R.
The need to attend to terminally ill persons and provide improved quality of living and dying should be a national priority in Canada. Hospice palliative care (HPC), a person-centered approach that addresses the needs of the whole person, improves the quality of living and dying of persons facing a life-threatening illness. To ensure Canadians are…
Simha, Srinagesh; Noble, Simon; Chaturvedi, Santosh K
Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care. PMID:24049350
Dumont, Serge; Jacobs, Philip; Turcotte, Véronique; Turcotte, Stéphane; Johnston, Grace
Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time. PMID:25058986
Voltz, Raymond; Kamps, Robert; Greinwald, Ralf; Hellmich, Martin; Hamacher, Stefanie; Becker, Gerhild; Kuhr, Kathrin
Objective To compare the mortality of patients in a palliative care unit on working days with that on weekends and public holidays. Design Retrospective database study. Setting Palliative care unit in Germany. Population All admissions to palliative care unit between 1 January 1997 and 31 December 2008. Main outcome measure The impact of day type (working days or weekends and public holidays) on mortality was analysed using Poisson regression models. Results A total of 2565 admitted patients and 1325 deaths were recorded. Of the deaths, 448 (33.8%) occurred on weekends and public holidays. The mortality rate on weekends and public holidays was 18% higher than that on working days (mortality rate ratio 1.18, 95% confidence interval 1.05 to 1.32; P=0.005). Conclusion Patients in the palliative care unit were at higher risk of dying on weekends and public holidays. In the absence of a prospective study, the exact reasons for this correlation are unclear. PMID:25515670
Sittikariyakul, Pat; Jaturapatporn, Darin; Kirshen, A. J.
Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory…
Daveson, Barbara A; de Wolf-Linder, Susanne; Witt, Jana; Newson, Kirstie; Morris, Carolyn; Higginson, Irene J; Evans, Catherine J
Background: Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking. Aim: To determine an optimal user-involvement model for palliative care research. Design: We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings. Setting/participants: Participants involved in palliative care research were invited to a global research institute, UK. Results: A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility. Conclusion: For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research. PMID:25931336
Köberich, Stefan; Ziehm, Jeantte; Farin, Erik; Becker, Gerhild
Background Despite its high prevalence, similar symptoms and symptom burden, people suffering from chronic heart failure receive less palliative care than patients with malignant diseases. Internationally, numerous barriers to palliative care of patients with chronic heart failure are known, however, there are no credible data regarding barriers and facilitators to palliative care of people suffering from chronic heart failure available for Germany. Design and Methods Tripartite study. First part of this study evaluates health care providers’ (physicians and nurses) perceived barriers and facilitators to palliative care of patients with chronic heart failure using a qualitative approach. At least 18 persons will be interviewed. In the second part, based on the results of part one, a questionnaire about barriers and facilitators to palliative care of patients with chronic heart failure will be designed and applied to at least 150 physicians and nurses. In the last part a classic Delphi method will be used to develop specific measures to improve the palliative care for chronic heart failure patients. Expected Impact for Public Health The results of this study will help to understand why patients with heart failure are seldom referred to palliative care and will provide solutions to overcome these barriers. Developed solutions will be the first step to improve palliative care in patients with heart failure in Germany. In addition, the results will help health care providers in other countries to take action to improve palliative care situations for heart failure patients. Significance for public health Patients with chronic heart failure suffer from similar symptoms and symptom burden than patients with malignant diseases. However, palliative care differs between these groups in a quantitative and qualitative way. This study will help to understand why patients with chronic heart failure receive less palliative care than patients with malignant disease. In addition, measures to overcome barriers and to promote facilitators of palliative care in patients with chronic heart failure will be developed. These recommendations could provide a basis for quality improvement projects or studies aiming at improving symptoms and symptom burden of heart failure patients. The recommended measures could also be used to reduce caregiver burden. PMID:26425500
Komatz, Kelly; Carter, Brian
Pain and symptom management is considered one of the cornerstones of palliative and hospice medicine. However, general clinicians and specialists are not usually comfortable addressing the most common forms of pain seen in the pediatric population. In addition, non-pain symptom management, especially when related to underlying chronic medical conditions, can be managed by the general clinician and specialists. The goal of this article is to educate clinicians about pain categories, taking a detailed pain history, and developing a plan for treatment, including nonpharmacologic methods. Finally, we discuss common symptoms in patients with chronic medical conditions, including first-line treatment options. PMID:26628733
Ghoshal, Arunangshu; Damani, Anuja; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann
Levofloxacin is a commonly prescribed antibiotic for managing chest and urinary tract infections in a palliative care setting. Incidence of Levofloxacin-associated anaphylaxis is rare and delirium secondary to Levofloxacin is a seldom occurrence with only few published case reports. It is an extremely rare occurrence to see this phenomenon in combination. Early identification and prompt intervention reduces both mortality and morbidity. A 17-year-old male with synovial sarcoma of right thigh with chest wall and lung metastasis and with no prior psychiatric morbidity presented to palliative medicine outpatient department with community-acquired pneumonia. He was initiated on intravenous (IV) Ceftriaxone and IV Levofloxacin. Post IV Levofloxacin patient developed anaphylaxis and acute delirium necessitating IV Hydrocortisone, IV Chlorpheneramine, Oxygen and IV Haloperidol. Early detection and prompt intervention helped in complete recovery. Patient was discharged to hospice for respite after 2 days of hospitalization and then discharged home. Acute palliative care approach facilitated management of two life-threatening medical complications in a palliative care setting improving both quality and length of life. PMID:25709191
Background There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations. PMID:20459734
Beck, Ingela; Runeson, Ingrid; Blomqvist, Kerstin
The aim of this study was to demonstrate how people with incurable cancer experienced soft massage in a palliative care setting in which massage was used as an established and integrated part of the nursing care. To reach a deep understanding of the experiences of receiving soft massage a qualitative method with a phenomenological approach was chosen. The study was based on interviews with eight patients in an advanced home care setting who had all received soft massage as part of their daily care. Soft massage was experienced by the informants as a way to find inner peace. During the massage the patients felt dignified, while memories from past massage sessions were about becoming free. These experiences of dignity and freedom brought hopes for the future. The conclusion is that soft massage ought to be offered in the ordinary palliative care. More research is needed to understand what is needed to integrate and establish methods such as soft massage in the palliative care. PMID:20081728
Håkanson, Cecilia; Öhlén, Joakim
The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person's ability of staying and feeling connected. The aim of this phenomenological study was to interpret meanings of connectedness, through narrative interviews with persons admitted to inpatient palliative care in Sweden. Results involving connectedness through the body, connectedness to, and uncanniness toward other patients, and connectedness to significant others and society are discussed. The study underscores the importance of connectedness until death. However, in inpatient palliative care this is complex. Patients can cocreate or challenge each other's sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connectedness is influenced by illness, spatiality, atmosphere, activities, and resources in the care place. PMID:25305250
Jacoby, A; Lecouturier, J; Bradshaw, C; Lovel, T; Eccles, M
This paper reports on the methodological findings from a project which examined the feasibility of using a postal questionnaire to assess lay carer satisfaction with palliative care. The focus of this paper is the process of questionnaire development and its psychometric evaluation. The questionnaire was derived from an interview schedule used in previous national surveys of care for the dying, and was refined through qualitative work with recently bereaved lay carers. It was then tested in a postal survey of 355 lay carers identified from death registration certificates. Overall response rates were low, but significantly enhanced by the use of a single reminder sent 3 weeks after the initial mailshot. The analysis indicated that in the majority of cases the person targeted to receive the questionnaire was the most appropriate informant. Psychometric evaluation of the questionnaire against five criteria was encouraging, with low item nonresponse and ineligible response, and some evidence of discriminatory power, reliability, and face and content validity. Postal approaches appear to represent an acceptable means of assessing user satisfaction with palliative care, compared with more resource-intensive methods. PMID:10659098
Pillemer, Karl; Chen, Emily K; Riffin, Catherine; Prigerson, Holly; Reid, M C
We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practice-based research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue. PMID:26378859
Investigators of a large-scale palliative care trial developed a recruitment plan that combined lessons learned from multiple, published, evidence-based strategies with social marketing principles. Recruitment goals were exceeded, with 76 percent of patients referred to the study enrolling. This abstract may be useful for investigators of palliative care trials and may have relevance for other types of large trials as well.
Kenny, Lesley J
This article describes the use of a creative thinking game to stimulate critical thinking and reflection with qualified health professionals undertaking palliative care education. The importance of reflective practice in nursing is well documented and numerous models are available. However, the author as a nurse teacher has found that many of these models are either too simple or too complex to be valuable in practice. The six hats game, devised by Edward de Bono, is a method that stimulates a variety of types of thinking and when used as a means of reflection helps students to become more critical about their practice. Using this game with a palliative care case study the author demonstrates how thinking more creatively about the patients' perceived needs and problems can assist in developing reflective skills. The article concludes with a discussion on some of the challenges of using this method and suggestions for future practical uses. PMID:12682572
Valls, Joan; Porta, Josep; Viñas, Juan
Abstract Introduction: Spiritual needs play an important role in palliative care as both a clinical dimension and a therapeutic strategy. However, recent studies have shown that the management of this dimension still remains a challenge at the clinical level of palliative care. Goals: Our goal was to evaluate the spiritual needs of patients diagnosed with advanced and terminal cancer by the palliative care unit of a hospital in Barcelona, Spain. Methods: An observational study was conducted that involved 50 patients who were recruited between May 2007 and January 2008. A questionnaire was used which included 28 items selected from a review of the literature; the responses were analyzed using a five-point Lickert scale. The results were grouped in 11 categories corresponding to different spiritual needs. Results: Two spiritual needs emerged as the most relevant for the patients: their need to be recognized as a person until the end of their life and their need to know the truth about their illness. The least important spiritual needs were identified as those: for continuity and an afterlife; to get rid of obsessions; to achieve freedom from blame and to be able to forgive others; and the need for reconciliation and to feel forgiven by others. Conclusions: When patients knew the truth about their illnesses and they were treated with dignity, their most important needs were likely to be covered. These results suggest that patients receiving palliative care wish to live for the present with as much normality as possible and show only minor concern for their past and future. PMID:24745870
Magnusson, Roger S
Health professionals do not always have the luxury of making "right" choices. This article introduces the "devil's choice" as a metaphor to describe medical choices that arise in circumstances where all the available options are both unwanted and perverse. Using the devil's choice, the paper criticizes the principle of double effect and provides a re-interpretation of the conventional legal and ethical account of symptom relief in palliative care. PMID:17144180
Przys?o, ?ukasz; K?dzierska, Bogna; Stolarska, Ma?gorzata; M?ynarski, Wojciech
Purpose. Most undergraduate palliative care curricula omit pediatric palliative care (PPC) issues. Aim of the study was to evaluate the pilot education programme. Methods. All 391 students of Faculty of Medicine (FM) and 59 students of Division of Nursing (DN) were included in anonymous questionnaire study. Respondents were tested on their knowledge and attitude towards PPC issues before and at the end of the programme and were expected to evaluate the programme at the end. Results. For final analysis, authors qualified 375 double forms filled in correctly (320 FM and 55 DN). Before the programme, students' knowledge assessed on 0–100-point scale was low (FM: median: 43.35 points; 25%–75%: (40p–53.3p); DN: 26.7p; 13.3p–46.7p), and, in addition, there were differences (P < 0.001) between both faculties. Upon completion of the programme, significant increase of the level of knowledge in both faculties was noted (FM: 80p; 73.3–100; DN: 80p; 66.7p–80p). Participation in the programme changed declared attitudes towards some aspects of withholding of special procedures, euthanasia, and abortion. Both groups of students positively evaluated the programme. Conclusions. This study identifies medical students' limited knowledge of PPC. Educational intervention changes students' attitudes to the specific end-of-life issues. There is a need for palliative care curricula evaluation. PMID:24501581
GRANT, MARIAN S.; WIEGAND, DEBRA L.; DY, SYDNEY M.
Objective Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. Method Mixed-methods descriptive design. Results There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people’s questions. Significance of results The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online. PMID:24909893
Damani, Anuja; Ghoshal, Arunangshu; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann
Hemichorea hemiballismus (HCHB) is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC) approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes. PMID:25709190
Ostwal, Shrenik; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann
Introduction: The Ramsay Hunt syndrome is characterized by combination of herpes infection and lower motor neuron type of facial nerve palsy. The disease is caused by a reactivation of Varicella Zoster virus and can be unrepresentative since the herpetic lesions may not be always be present (zoster sine herpete) and might mimic other severe neurological illnesses. Case Report: A 63-year-old man known case of carcinoma of gall bladder with liver metastases, post surgery and chemotherapy with no scope for further disease modifying treatment, was referred to palliative care unit for best supportive care. He was on regular analgesics and other supportive treatment. He presented to Palliative Medicine outpatient with 3 days history of ipsilateral facial pain of neuropathic character, otalgia, diffuse vesciculo-papular rash over ophthalmic and maxillary divisions of left trigeminal nerve distribution of face and ear, and was associated with secondary bacterial infection and unilateral facial edema. He was clinically diagnosed to have Herpes Zoster with superadded bacterial infection. He was treated with tablet Valacyclovir 500 mg four times a day, Acyclovir cream for local application, Acyclovir eye ointment for prophylactic treatment of Herpetic Keratitis, low dose of Prednisolone, oral Amoxicillin and Clindamycin for 7 days, and Pregabalin 150 mg per day. After 7 days of treatment, the rash and vesicles had completely resolved and good improvement of pain and other symptoms were noted. Conclusion: Management of acute infections and its associated complications in an acute palliative care setting improves both quality and length of life. PMID:25709192
Kullgren, Justin; Unni, Elizabeth; Hanson, Eric
Objective. To describe the development of an integrated pain and palliative care course and to investigate the long-term effectiveness of the course during doctor of pharmacy (PharmD) students’ advanced pharmacy practice experiences (APPEs) and in their practice after graduation. Design. Roseman University College of Pharmacy faculty developed a 3-week elective course in pain and palliative care by integrating relevant clinical and pharmaceutical sciences. Instructional strategies included lectures, team and individual activities, case studies, and student presentations. Assessment. Students who participated in the course in 2010 and 2011 were surveyed anonymously to gain their perception about the class as well as the utility of the course during their APPEs and in their everyday practice. Traditional and nontraditional assessment of students confirmed that the learning outcomes objectives were achieved. Conclusions. Students taking the integrated course on pain management and palliative care achieved mastery of the learning outcome objectives. Surveys of students and practicing pharmacists who completed the course showed that the learning experience as well as retention was improved with the integrated mode of teaching. Integrating basic and clinical sciences in therapeutic courses is an effective learning strategy. PMID:23966724
Schröder, Christina; Bänsch, Alexander; Schröder, Harry
Aims of this representative study were to assess the relevant differences between the work and organisational characteristics as well as the subjective resources and health status of nurses occupied in hospice care, compared to nurses from palliative stations. Further, the assessment of the predictive correlations between the work situation of this nurses as a factor influencing their health and perceived strains was also a leading intention. Method: In a written survey conducted in Germany in 2001, 820 nursing staff of 113 palliative stations and stationary hospices were included. A qualified diagnostic procedure for the assessment of health promoting work was implemented. In order of obtaining a secure comparison, a sample of 320 nurses working in 12 homes for old people in Saxony was also considered. Results: The nurses referred generally to favourable working conditions, still they informed about deficiencies in the perceived participation, organizational benefits and experienced gratification. Hospice nurses experienced overall more favourable work conditions than palliative nurses or than the staff of homes for old people (regarding identification with the institution, organizational benefits, accurate gratification and little time pressure during work). Hospice personnel were psychologically and physically healthier than the staff of palliative stations. Important predictors for health stability that could be assessed by multiple regression analysis were: positively evaluated work contents, the identification with the institution, little time pressure and a positive working atmosphere. Conclusions: The assessed organisational framework is generally more favourable in the institutions of professional terminal care than in common hospitals and homes for old people. Therefore, the conditions in hospices could have a modelling function for the inner-institutional work organisation and for the anchorage of the intrinsic motivation of nurses in the health care system. PMID:19742056
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
Oxenham, David; Finucane, Anne; Arnold, Elizabeth; Russell, Papiya
Over the last 10 years, one of the key themes of public policy in palliative care has been achievement of choice in place of death. In Marie Curie Hospice Edinburgh a baseline audit conducted in 2006 showed that only a small proportion (18%) of patients referred to hospice services died at home. The audit also revealed that only 31% of those who expressed a preference to die at home were able to do so, whereas 91% of those who chose a setting other than home achieved their preference. Overall achievement of preferred place of death was 56%. However a significant number of patients (29%) did not have a recorded preference. A programme of quality improvement has continued over the last 7 years to improve identification, communication and achievement of preferred place of death for all patients. The mechanisms to change practice have been: changes to documentation; changes to clinical systems to support use of documentation; support for clinical staff to recognise the value of discussing preferences; and support for clinical staff to develop new skills. In addition the programme has been incorporated into local clinical strategy and this has enabled gaps in service to be addressed with a new service to support early discharge of those patients who wish to die at home. A recent audit showed that all patients had a recorded preference or a documented reason why their preference was unclarified. One third of patients died at home – nearly double the proportion that died at home in the baseline audit. Seventy one per cent of patients who wished to die at home actually died at home – a substantial increase from 31% at baseline. Achievement of preferred place of death for patients wishing to die in the hospice remained high at 88%. The focus on assessment of preference for place of death has led to substantial improvements in the identification and achievement of preference for patients dying under the care of the hospice. Furthermore, it has been associated with an increase in the overall proportion of patients who die at home.
Nakawesi, Jane; Kasirye, Ivy; Kavuma, David; Muziru, Benjamin; Businge, Alice; Naluwooza, Jackie; Kabunga, Grace; Karamagi, Yvonne; Akankwasa, Edith; Odiit, Mary; Mukasa, Barbara
Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-limiting conditions and also for their families. It is a response to the suffering and unique needs of such children. Globally there is limited documented data available on the palliative care needs of children with HIV. A retrospective review of data of all the HIV exposed and positive children who were admitted to the ward from January to December 2012 was done to document their palliative care needs. A total of 243 children were admitted to the ward during the stated period. Of these, 139 (57.2%) were female and 104 (42.8%) were male. Among them 131 (54%) were aged five years and below whereas 112 (46%) were above five years. Some of the identified palliative care needs documented included physical needs: pneumonia 46 (19%), severe acute malnutrition 38 (16%), mild and moderate acute malnutrition 23 (9.6%), and respiratory tract infections 22 (9.3%). Social needs: poor social support 21 (41%), financial instability 16 (31%), and child neglect 4 (8%). Psychological needs: antiretroviral treatment (ART) counselling 127 (36%), HIV counselling and testing for the child and family 63 (18%), adherence support 53 (15%), and others 11 (3%). Spiritual needs: discontinuing ART because of belief in spiritual healing 18 (81%), loss of hope because of severe ill health 1 (5%), and others 3 (14%). These results emphasise the need for palliative care in children with HIV even in the era of ART. The needs identified are in keeping with studies done elsewhere and are similar to the palliative care needs of children with other life-limiting illnesses such as cancer. Conclusion HIV positive and exposed children plus their families have vast palliative care needs and a holistic approach is the key in their management. PMID:25624870
Downing, J; Namisango, E; Kiyange, F; Luyirika, E; Gwyther, L; Enarson, S; Kampi, J; Sithole, Z; Kemigisha-Ssali, E; Masclee, M; Mukasa, I
The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care. PMID:24222787
Optimisation of the continuum of supportive and palliative care for patients with breast cancer in low-income and middle-income countries: executive summary of the Breast Health Global Initiative, 2014.
Distelhorst, Sandra R; Cleary, James F; Ganz, Patricia A; Bese, Nuran; Camacho-Rodriguez, Rolando; Cardoso, Fatima; Ddungu, Henry; Gralow, Julie R; Yip, Cheng-Har; Anderson, Benjamin O
Supportive care and palliative care are now recognised as critical components of global cancer control programmes. Many aspects of supportive and palliative care services are already available in some low-income and middle-income countries. Full integration of supportive and palliative care into breast cancer programmes requires a systematic, resource-stratified approach. The Breast Health Global Initiative convened three expert panels to develop resource allocation recommendations for supportive and palliative care programmes in low-income and middle-income countries. Each panel focused on a specific phase of breast cancer care: during treatment, after treatment with curative intent (survivorship), and after diagnosis with metastatic disease. The panel consensus statements were published in October, 2013. This Executive Summary combines the three panels' recommendations into a single comprehensive document covering breast cancer care from diagnosis through curative treatment into survivorship, and metastatic disease and end-of-life care. The recommendations cover physical symptom management, pain management, monitoring and documentation, psychosocial and spiritual aspects of care, health professional education, and patient, family, and caregiver education. PMID:25752564
Howard, Scott C.; Baker, Justin N.; Ribeiro, Raul C.; Lam, Catherine G.
Abstract Background: The majority of young people in need of palliative care live in low- and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care services available to young people with life-limiting conditions in low- and middle-income countries and assessed core elements with respect to availability, gaps, and under-reported aspects. Methods: PubMed, CINAHL, EMBASE (1980–2013), and secondary bibliographies were searched for publications that included patients younger than 25 years with life-limiting conditions and described palliative care programs in low- and middle-income countries. A data extraction checklist considered 15 items across seven domains: access, education/capacity building, health system support, pain management, symptom management, end-of-life care, and bereavement. Data were aggregated by program and country. Results: Of 1572 records, 238 met criteria for full-text review; 34 qualified for inclusion, representing 30 programs in 21 countries. The median checklist score was 7 (range, 1–14) of 10 reported (range, 3–14). The most pervasive gaps were in national health system support (unavailable in 7 of 17 countries with programs reporting), specialized education (unavailable in 7 of 19 countries with programs reporting), and comprehensive opioid access (unavailable in 14 of 21 countries with programs reporting). Underreported elements included specified practices for pain management and end-of-life support. Conclusion: Comprehensive pediatric palliative care provision is possible even in markedly impoverished settings. Improved national health system support, specialized training and opioid access are key targets for research and advocacy. Application of a checklist methodology can promote awareness of gaps to guide program evaluation, reporting, and strengthening. PMID:25225748
Background Improving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management. Methods A prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded. Results Ninety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan. Conclusion One fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions. PMID:23537092
Pesut, Barbara; Hooper, Brenda; Lehbauer, Suzanne; Dalhuisen, Miranda
Hospice volunteers play an essential role in the primary care network for end of life. The purpose of this review was to examine the evidence on hospice volunteers published between 2002 and July 2012. An electronic search of PubMed, CINAHL and PsychINFO using controlled vocabulary, and a reference scan, yielded 54 studies focusing on hospice volunteers. Studies were primarily descriptive using quantitative, qualitative and mixed methods. Findings from studies were grouped thematically into descriptions of the work of hospice volunteers; recruitment, preparation and retention of hospice volunteers; and perspectives and outcomes of the volunteer role. A substantial body of evidence exists describing the roles, stresses and rewards of hospice volunteering. Less is known about how to adequately recruit, prepare and retain volunteers. A small but intriguing body of evidence exists around volunteers' contributions to family satisfaction and patient longevity. Although the evidence around hospice volunteers continues to grow, there is an urgent need for further research. Findings indicate that volunteers make important contributions to high quality end of life care. However, more focused research attention is required to better understand how to maximize this contribution while providing better support for volunteers. PMID:23277631
Bugge, Ellen; Higginson, Irene J.
Caring for patients with progressive illness who need symptomatic and palliative care involves professionals as well as non-professionals. Within the variety of settings that may exist around a patient, education will be constantly needed. A limited systematic review was therefore conducted in order to highlight factors that influence informal…
Hahn, Joan E.; Cadogan, Mary P.
Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop,…
Ohnsorge, K; Gudat, H; Rehmann-Sutter, C
Objective To investigate the variations in and intentions of wishes to die (WTD) of palliative care cancer patients. Methods Thirty terminally ill cancer patients, their caregivers and relatives in a hospice, an oncology palliative care ward of a general hospital, and an outpatient palliative care service. 116 semistructured qualitative interviews analyzed by a combined approach using Grounded Theory and Interpretive Phenomenological Analysis. Results A WTD is dynamic and interactive. Its subjective phenomenology can be described by three aspects: intentions, motivations, and interactions. In this article, we present a typology of the possible intentions. We identified nine different (ideal) types of intentions that WTD statements might have, other than wishing to live and accepting death. Many WTD statements do not imply a desire to hasten death. The intentions of statements differ according to whether a WTD is related to as imaginary or as an action. Often WTD statements contain several partial wishes, which can be in tension with each other and form a dynamic, sometimes unstable equilibrium. Conclusions Terminally ill persons' WTD statements differ in their intention, and deeper knowledge about these differences is ethically relevant. PMID:24706488
Background Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background. Methods A qualitative design was used as we were looking for the personal views of 'very ill' cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 83 people, involved in 33 cases to obtain information about their views, values and norms on 'good care'. Results The main concerns about 'good care' expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient. Conclusions Patients and their families with a Turkish or Moroccan background often have different ideas about 'good care' than their Dutch care providers. As many of them are aiming at cure until the end of life, they find 'good palliative care' a contradiction in terms. PMID:20831777
Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future. Trial registration National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041. PMID:20678203
Klein Remane, Ursula; Fringer, André
Voluntary Refusal of Food and Fluid (VRFF) is one possibility for patients in palliative situations to hasten death and avoid further suffering. By means of a mapping literature review this article describes the medical, nursing, ethical and legal perspective of care for people who wish to hasten death using VRFF. The results show that the wish to die is affected by psychological, social, spiritual and physical factors. VRFF is a little-known, legal and independently viable method to hasten death. Reducing fluid intake to 40 ml daily, the dying process takes one to three weeks. VRFF can be regarded as a natural death, foregoing treatment or as suicide. In contrast to physician assisted suicide or euthanasia, patients dying by VRFF experience a "natural" dying process and the decision is reversible in the first few days. As authority to act lies with the person wishing to die professionals and family caring for the dying are practicing palliative care, as opposed to assisted suicide or euthanasia. Professionals and family involved in the decision-making process are confronted with various ethical problems. Further research concerning VRFF and its implications for practice is necessary. PMID:24297830
Wu, Xinyin; Chung, Vincent Ch; Hui, Edwin P; Ziea, Eric Tc; Ng, Bacon Fl; Ho, Robin St; Tsoi, Kelvin Kf; Wong, Samuel Ys; Wu, Justin Cy
Acupuncture and related therapies such as moxibustion and transcutaneous electrical nerve stimulation are often used to manage cancer-related symptoms, but their effectiveness and safety are controversial. We conducted this overview to summarise the evidence on acupuncture for palliative care of cancer. Our systematic review synthesised the results from clinical trials of patients with any type of cancer. The methodological quality of the 23 systematic reviews in this overview, assessed using the Methodological Quality of Systematic Reviews Instrument, was found to be satisfactory. There is evidence for the therapeutic effects of acupuncture for the management of cancer-related fatigue, chemotherapy-induced nausea and vomiting and leucopenia in patients with cancer. There is conflicting evidence regarding the treatment of cancer-related pain, hot flashes and hiccups, and improving patients' quality of life. The available evidence is currently insufficient to support or refute the potential of acupuncture and related therapies in the management of xerostomia, dyspnea and lymphedema and in the improvement of psychological well-being. No serious adverse effects were reported in any study. Because acupuncture appears to be relatively safe, it could be considered as a complementary form of palliative care for cancer, especially for clinical problems for which conventional care options are limited. PMID:26608664
Wu, Xinyin; Chung, Vincent CH; Hui, Edwin P; Ziea, Eric TC; Ng, Bacon FL; Ho, Robin ST; Tsoi, Kelvin KF; Wong, Samuel YS; Wu, Justin CY
Acupuncture and related therapies such as moxibustion and transcutaneous electrical nerve stimulation are often used to manage cancer-related symptoms, but their effectiveness and safety are controversial. We conducted this overview to summarise the evidence on acupuncture for palliative care of cancer. Our systematic review synthesised the results from clinical trials of patients with any type of cancer. The methodological quality of the 23 systematic reviews in this overview, assessed using the Methodological Quality of Systematic Reviews Instrument, was found to be satisfactory. There is evidence for the therapeutic effects of acupuncture for the management of cancer-related fatigue, chemotherapy-induced nausea and vomiting and leucopenia in patients with cancer. There is conflicting evidence regarding the treatment of cancer-related pain, hot flashes and hiccups, and improving patients’ quality of life. The available evidence is currently insufficient to support or refute the potential of acupuncture and related therapies in the management of xerostomia, dyspnea and lymphedema and in the improvement of psychological well-being. No serious adverse effects were reported in any study. Because acupuncture appears to be relatively safe, it could be considered as a complementary form of palliative care for cancer, especially for clinical problems for which conventional care options are limited. PMID:26608664
Schapmire, Tara; Hermann, Carla; Earnshaw, Lori; Faul, Anna; Jones, Carol; Kayser, Karen; Martin, Amy; Shaw, Monica Ann; Woggon, Frank; Pfeifer, Mark
Abstract Background: Interprofessional education is necessary to prepare students of the health professions for successful practice in today's health care environment. Because of its expertise in interdisciplinary practice and team-based care, palliative care should be leading the way in creating educational opportunities for students to learn the skills for team practice and provision of quality patient-centered care. Multiple barriers exist that can discourage those desiring to create and implement truly interdisciplinary curriculum. Design: An interdisciplinary faculty team planned and piloted a mandatory interdisciplinary palliative oncology curriculum and responded to formative feedback. Setting/Subjects: The project took place at a large public metropolitan university. Medical, nursing, and social work students and chaplains completing a clinical pastoral education internship participated in the curriculum. Measurements: Formative feedback was received via the consultation of an interdisciplinary group of palliative education experts, focus groups from students, and student evaluations of each learning modality. Results: Multiple barriers were experienced and successfully addressed by the faculty team. Curricular components were redesigned based on formative feedback. Openness to this feedback coupled with flexibility and compromise enabled the faculty team to create an efficient, sustainable, and feasible interdisciplinary palliative oncology curriculum. Conclusion: Interdisciplinary palliative education can be successful if faculty teams are willing to confront challenges, accept feedback on multiple levels, and compromise while maintaining focus on desired learner outcomes. PMID:24972279
Cassel, J. Brian; Kerr, Kathleen M.; Kalman, Noah S.; Smith, Thomas J.
Specialist palliative care (PC) often embraces a “less is more” philosophy that runs counter to the revenue-centric nature of most health care financing in the U.S. A special business case is needed in which the financial benefits for organizations such as hospitals and payers are aligned with the demonstrable clinical benefits for patients. Based on published studies and our work with PC programs over the past 15 years, we identified 10 principles that together form a business model for specialist PC. These principles are relatively well established for inpatient PC but are only now emerging for community-based PC. Three developments that are key for the latter are the increasing penalties from payers for overutilization of hospital stays, the variety of alternative payment models such as accountable care organizations, which foster a population health management perspective, and payer-provider partnerships that allow for greater access to and funding of community-based PC. PMID:26297853
Rucker, Bronwyn; Browning, David M
A Physician Communication Training Program (PCTP) utilizing scripts based on actual family conferences with patients, families, and the health care team was developed at one medical center in the Northeast. The program was designed, adapted, and directed by a palliative care social worker. The primary goal of the program is to help residents and attending physicians build better communication skills in establishing goals of care and in end-of-life planning. The scripts focus on improving physicians' basic skills in conducting family meetings, discussing advance directives, prognosis, brain death, and withdrawal of life support. Excerpts from the scripts utilized in the program are included. Feedback from participants has been positive, with all respondents indicating improvement in their capacity to take part in these challenging conversations. PMID:26380923
Bennett, Joann; Dutcher, Janet; Snyders, Michele
Anticipatory grief is experienced by families who are informed that their unborn child may not survive in utero or during or after delivery. The child who survives delivery, but is critically ill, brings a combination of emotions to the family: joy in welcoming a new life and fear for the future. The healthcare team members caring for the patient and family often witness this grief and are impacted. In the perinatal setting, the care continuum for these patients begins at diagnosis, typically in the prenatal setting, and continued support extends beyond the presumed life expectancy of the child. This case study is provided to demonstrate the utilization of a palliative care interdisciplinary approach to meeting the complex bereavement needs of a family who was expecting a child with a life-impacting congenital condition. PMID:21311273
Alvarado, Vanessa; Liebig, Brigitte
Different attitudes towards, and ideas about the end of life, represent an often experienced challenge in palliative care provided by family doctors. If values diverge too strongly, considerable strain can originate from it for the health care professionals, in particular if it is about assisted suicide. How do family doctors experience the incompatibility between patients’ wishes and personal values? How do they succeed to bridge value divergences? Based on group discussions with family doctors in Switzerland the contribution focusses on these questions and identifies different strategies of family doctors. The results indicate that in particular ’convergence of perspectives’ with patients can reduce the strain for family doctors and can at the same time guarantee high quality of care. PMID:26423883
Cassel, J Brian; Kerr, Kathleen M; Kalman, Noah S; Smith, Thomas J
Specialist palliative care (PC) often embraces a "less is more" philosophy that runs counter to the revenue-centric nature of most health care financing in the U.S. A special business case is needed in which the financial benefits for organizations such as hospitals and payers are aligned with the demonstrable clinical benefits for patients. Based on published studies and our work with PC programs over the past 15 years, we identified 10 principles that together form a business model for specialist PC. These principles are relatively well established for inpatient PC but are only now emerging for community-based PC. Three developments that are key for the latter are the increasing penalties from payers for overutilization of hospital stays, the variety of alternative payment models such as accountable care organizations, which foster a population health management perspective, and payer-provider partnerships that allow for greater access to and funding of community-based PC. PMID:26297853
Weißflog, Gregor; Mehnert, Anja
Loss is a universal human experience. Within the context of cancer and especially in the palliative care of oncological patients, anticipated and real losses and their management play a crucial role. A high proportion of patients and family members develop a treatment requiring psychiatric comorbidity (for both groups between 20 and 30%, mainly adjustment and anxiety disorders and depression). Approximately 15% of the bereaved persons suffer from complicated grief after the death of their relative. Within the early palliative care, the implementation of the Family Focused Grief Therapy (FFGT) has the potential to reduce psychological distress incl. mental comorbidities in patients and their relatives. Simultaneously, the incidence of the prolonged grief disorder in bereaved persons could be diminished (after the death of their relative). Thus, the FFGT can make a substantial contribution in order to improve the palliative care of cancer patients and their bereaved persons. PMID:26039366
Background This study explores the experience of palliative patients and their family members of a family meeting model, utilised as an instrument for the provision of spiritual and psychosocial care. In doing so the study embraces a broad understanding of spirituality which may or may not include formal religious practice and a concept of psychosocial care that includes: social and emotional well-being, communication, self esteem, mental health and adaptation to illness. The meeting of spiritual and psychosocial needs is considered to be an important aspect of palliative care. Methods This qualitative study, philosophically underpinned by hermeneutic phenomenology, investigates the participatory experience of palliative care patients and their significant family members of such a family meeting. People registered with two large metropolitan palliative care services, who met selection criteria, were referred by medical staff. Twelve of the 66 referred took part in family meetings which also included significant others invited by the patient. A total of 36 family members participated. The number of participants of individual family meetings ranged from two to eleven. After the family meeting every participant was invited to take part in an individual in-depth interview about their experience of the meeting. Forty seven interviews were conducted. These were audio recorded and transcribed. Results Data analysis, utilising Ricoeur's theory of interpretation, revealed seven main themes: personal experience of the meeting, personal outcomes, observation of others' experience, observation of experience and outcomes for the family unit, meeting facilitation, how it could have been different and general applicability of the family meeting. Throughout these themes were numerous references to aspects of the web of relationships which describe the concept of spirituality as it is defined for the purpose of this study. Conclusions The findings indicate the potential of the type of family meeting reported for use in the spiritual and psychosocial care of people receiving palliative care and their families. However further research is needed to explore its application to more culturally diverse groups and its longer term impact on family members. PMID:21435259
Early Palliative Care With Standard Care or Standard Care Alone in Improving Quality of Life of Patients With Incurable Lung or Non-colorectal Gastrointestinal Cancer and Their Family Caregivers | Division of Cancer Prevention
This randomized phase III trial studies how well early palliative care integrated with standard care works compared with standard care alone in improving the quality of life of patients and their family caregivers. Palliative care focuses on improving the quality of life for patients with advanced diseases and their family members by providing support for relief of physical symptoms, emotional and psychological support, and counseling.
Aim: The study aims to explore the attitudes and perceptions of family and community palliative care givers pertaining to volunteerism. Objective: The main objective is to involve palliative caregivers and their supervisors in assessing their contribution to care and evaluate their state of volunteerism. Materials and Methods: The study attracted qualitative design and involved 82 palliative caregivers in 10 focus group discussions; one-to-one interviews with the nurses supervising them. Two slightly different interview guides were used as research instruments. Results: Findings indicate that palliative care giving volunteerism is motivated and sustained by: (1) Principles of love emanating from blood and kinship relations; (2) Patriotism and community responsibility over one another; (3) Adherence and respect of their culture and government call. Volunteerism was also found challenged by: (1) Predominance of the elderly and lowly educated women; (2) Poverty and heavy caseload; (3) Being shunned by the youth; (4) And lack of morale, recognition and motivation. Recommendations: The study recommends: (1) Socializing boys early enough in life into care giving; (2) Offering incentives to the caregivers; (3) Use of public forums to persuade men to accept helping women in carrying out care giving duties; (4) And enlisting support of all leaders to advocate for men’s involvement in care giving. PMID:20859466
Gwyther, Lisa P; Altilio, Terry; Blacker, Susan; Christ, Grace; Csikai, Ellen L; Hooyman, Nancy; Kramer, Betty; Linton, Julie; Raymer, Mary; Howe, Judith
Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions. PMID:17387058
Plaskota, Marek; Lucas, Caroline; Evans, Rosie; Cook, Karen; Pizzoferro, Kathleen; Saini, Treena
This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population. PMID:22399044
Kremeike, K; Mohr, A; Nachtmann, J; Reinhardt, D; Geraedts, M; Sander, A
Background: In 2007 the children's right to specialised paediatric palliative home care became law in Germany. This claim should be met in Lower Saxony by the establishment of a comprehensive specialised paediatric home care (SPPHC). Since April 2010, a central office undertakes the coordination and administration throughout the federal state. Regional teams comprising nursing, medical and psychosocial specialists care for the children and adolescents suffering from complex conditions due to life-limiting conditions - subsidiary to regional health care providers. The aim of the study was to evaluate SPPHC in Lower Saxony. Methodology: From June 2012 to February 2013, semi-structured interviews were conducted with 20 parents of children aged from 3 to 18 years. The young patients fulfilled all criteria to be eligible for SPPHC. 13 of the families experienced SPPHC. 7 families did not utilise the specialised care, mostly because the palliative situation occurred before the implementation of specialised care. Data were analysed using content analysis (Mayring). Therefore, key aspects of paediatric palliative home care were summarised in main categories. The evaluation of parent's satisfaction with palliative home care was performed by an evaluation scheme developed for the main categories (very good - good - bad- very bad) and operated for every case. Results: 6 dimensions of paediatric palliative home care were identified: (i) benefit of care, (ii) continuity of care, (iii) perception of care providers as a team, (iv) dealing with the issues death and dying/hospice and palliative, (v) care provider's communication/cooperation with parents, and (vi) parent's Information. As all parents clearly indicated a rating on the first 3 categories, these categories were selected for the evaluation of parent's satisfaction with the received home care. The evaluation revealed that parents experienced in SPPHC looked upon these 3 main categories more favourably than parents without the experience of SPPHC. As room for improvement, the respondents requested the extension of physician's presence and communication with the families as well as with each other, efforts to better meet the needs of psycho-social support of the families and to optimise follow up-care. Conclusion: The implementation of SAPPV was rated positively by the concerned families. In addition, options for improvement could be identified. PMID:25397908
Evans, Catherine J.; Benalia, Hamid; Preston, Nancy J.; Grande, Gunn; Gysels, Marjolein; Short, Vicky; Daveson, Barbara A.; Bausewein, Claudia; Todd, Chris; Higginson, Irene J.
Context A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. Objectives To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. Methods An international expert “workshop” was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. Results There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. Conclusion Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement. PMID:23628515
Deodhar, Jayita Kedar; Muckaden, Mary Ann
Context: Training programs for volunteers prior to their working in palliative care are well-established in India. However, few studies report on continuing professional development programs for this group. Aims: To conduct a preliminary assessment of educational needs of volunteers working in palliative care for developing a structured formal continuing professional development program for this group. Settings and Design: Cross-sectional observational study conducted in the Department of Palliative Medicine of a tertiary care cancer institute in India. Materials and Methods: Participant volunteers completed a questionnaire, noting previous training, years of experience, and a comprehensive list of topics for inclusion in this program, rated in order of importance according to them. Statistical Analysis Used: Descriptive statistics for overall data and Chi-square tests for categorical variables for group comparisons were applied using Statistical Package for Social Sciences version 18. Results: Fourteen out of 17 volunteers completed the questionnaire, seven having 5–10-years experience in working in palliative care. A need for continuing professional development program was felt by all participants. Communication skills, more for children and elderly specific issues were given highest priority. Spiritual-existential aspects and self-care were rated lower in importance than psychological, physical, and social aspects in palliative care. More experienced volunteers (>5 years of experience) felt the need for self-care as a topic in the program than those with less (<5-years experience) (P < 0.05). Conclusions: Understanding palliative care volunteers’ educational needs is essential for developing a structured formal continuing professional development program and should include self-care as a significant component. PMID:26009668
Selman, Lucy; Harding, Richard
Palliative care in India has made enormous advances in providing better care for patients and families living with progressive disease, and many clinical services are well placed to begin quality improvement initiatives, including clinical audit. Clinical audit is recognized globally to be essential in all healthcare, as a way of monitoring and improving quality of care. However, it is not common in developing country settings, including India. Clinical audit is a cyclical activity involving: identification of areas of care in need of improvement, through data collection and analysis utilizing an appropriate questionnaire; setting measurable quality of care targets in specific areas; designing and implementing service improvement strategies; and then re-evaluating quality of care to assess progress towards meeting the targets. Outcome measurement is an important component of clinical audit that has additional advantages; for example, establishing an evidence base for the effectiveness of services. In resource limited contexts, outcome measurement in clinical audit is particularly important as it enables service development to be evidence-based and ensures resources are allocated effectively. Key success factors in conducting clinical audit are identified (shared ownership, training, managerial support, inclusion of all members of staff and a positive approach). The choice of outcome measurement tool is discussed, including the need for a culturally appropriate and validated measure which is brief and simple enough to incorporate into clinical practice and reflects the holistic nature of palliative care. Support for clinical audit is needed at a national level, and development and validation of an outcome measurement tool in the Indian context is a crucial next step. PMID:20859465
... Late Effects of Treatment Life After Cancer Research Scientific Advisory Council Acceleration Initiative Young Investigators Community Impact Awards Clinical Trials Hospitals We Support Research ...
... Liver Disease Lung Cancer Multiple Myeloma Ovarian Cancer Pancreatic Cancer Parkinson’s Disease Prostate Cancer Stroke Stories Glossary FAQ ... Liver Disease Lung Cancer Multiple Myeloma Ovarian Cancer Pancreatic Cancer Parkinson’s Disease Prostate Cancer Stroke Stories Glossary FAQ ...
Schneider, N; Buser, K; Janus, K; Brandes, I; Amelung, V E
Palliative care can be considered a holistic care approach for patients faced with incurable and progressive diseases in their last period of life. In this context, structural, cultural and content-related deficits are increasingly taken into account in the German health care system, however, there is a lack of scientific data. Therefore, it was the objective of an expert team at Hannover Medical School to analyse the current situation of palliative care in Lower Saxony from the perspective of health system research and to give recommendations for its further development, based on empirical studies in Lower Saxony and on a systematic national and international literature review. The study revealed that the main shortcomings were an unclear structuring and an inadequate definition with respect to other areas of care, a fundamental lack of integration in regard of routine processes of care and a lack of thorough tools for needs assessments. Therefore, a concept for the integration of palliative care in the care processes of cancer patients was developed and the specific need for hospice beds in regional districts was calculated by using parameters representing provision-related and epidemiological/demographic conditions. In comparison to current structures, an assessment of over- and undersupply as well as specific recommendations how to optimize palliative care were provided for politicians, payers and providers in Lower Saxony. PMID:16308806
Dhiliwal, Sunil R; Salins, Naveen
Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS), multimedia messaging service (MMS) and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility. PMID:25709195
Dhiliwal, Sunil R; Salins, Naveen
Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS), multimedia messaging service (MMS) and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility. PMID:25709195
Being aware of notions of spirituality and ethnicity are perhaps at no time as important in nursing as at the end of a patient's life. This paper reflects on a case study of a patient receiving palliative care who was a nurse from Africa. One key reflection that arose from this case is 'what is spirituality?' How this is expressed is a dynamic process, and cannot necessarily be captured by a one-off question and answer session. The following case study highlights that what we want at the end of life, or may think we would want is not at all fixed. Therefore, nurses caring for dying patients need to be open-minded, and check regularly that the patient's chosen pathway is being followed. Also, there must be space for patients to change their minds. Tools are available and might be usefully adapted to suit individual patients' needs. PMID:20220674
Robinson, Sophie; Kissane, David W; Brooker, Joanne; Burney, Susan
Demoralization has been the subject of discussion in relation to end-of-life care. It is characterized by hopelessness and helplessness due to a loss of purpose and meaning. The purpose of this review was to consolidate the conceptual understanding of demoralization and argue for its existence as a psychiatric syndrome. The history of the construct is explored, including the nature of existential distress and related psychological conditions that precipitate demoralization. Recent definitions of demoralization are described and differentiated from similar constructs. Future directions are highlighted, specifically in relation to the assessment, diagnosis, and treatment of demoralization in palliative care. Overall, demoralization is a clinically useful construct for those facing existential threat, guiding the clinician toward efforts to restore morale, meaning, and purpose. PMID:25294224
Gibbins, J; McCoubrie, R; Maher, J; Wee, B; Forbes, K
In their first year of work, newly qualified doctors will care for patients who have palliative care needs or who are dying, and they will need the skills to do this throughout their medical career. The General Medical Council in the United Kingdom has given clear recommendations that all medical students should receive core teaching on relieving pain and distress together with caring for the terminally ill. However, medical schools provide variable amounts of this teaching; some are able to deliver comprehensive programmes whilst others deliver very little. This paper presents the results of a mixed methods study which explored the structure and content of palliative care teaching in different UK medical schools, and revealed what coordinators are trying to achieve with this teaching. Nationally, coordinators are aiming to help medical students overcome the same fears held by the lay public about death, dying and hospices, to convey that the palliative care approach is applicable to many patients and is part of every doctors' role, whatever their specialty. Although facts and knowledge were thought to be important, coordinators were more concerned with attitudes and helping individuals with the transition from medical student to foundation doctor, providing an awareness of palliative medicine as a specialty and how to access it for their future patients. PMID:20176616
Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak
Introduction: The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). Materials and Methods: We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. Results: The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps Conclusion: Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended. PMID:26600701
Background The nationwide integration of palliative care best practices into general care settings is challenging but important in improving the quality of palliative care. This is why the Dutch National Quality Improvement Programme for Palliative Care has recently been launched. This four-year programme consists of about 70 implementation trajectories of best practices. A large evaluation study has been set up to evaluate this national programme and separate implementation trajectories. Methods/Design This paper presents the protocol of the evaluation study consisting of a quantitative effect evaluation and a qualitative process evaluation. The effect evaluation has a pre-test post-test design, with measurements before implementation (month 0) and after implementation (month 9) of a best practice. Patients are eligible if they have a life expectancy of less than six months and/or if they are undergoing palliative treatment and provided they are physically and mentally capable of responding to questionnaires. Bereaved relatives are eligible if they have been involved in the care of a deceased patient who died after a sickbed between six weeks and six months ago. Three types of measurement instruments are used: (1) numerical rating scales for six symptoms (pain, fatigue, breathlessness, obstipation, sadness and anxiety), (2) the Consumer Quality Index Palliative Care - patient version and (3) the version for bereaved relatives. The process evaluation consists of analysing implementation plans and reports of the implementation, and individual and group interviews with healthcare professionals. This will be done nine to eleven months after the start of the implementation of a best practice. Discussion This mixed-method evaluation study gives more insight into the effects of the total programme and the separate implementation trajectories. However, evaluation of large quality improvement programmes is complicated due to changing, non-controlled environments. Therefore, it is important that an effect evaluation is combined with a process evaluation. Trial registration NTR-4085 PMID:24555536
Mpinga, Emmanuel Kabengele; Chastonay, Philippe; Rapin, Charles-Henri
To evaluate the extent and the quality of the research related to End of life conflicts in palliative care from 1995 to 2004. Accessible Literature of several electronic data bases (BDSP, Cinhal, Cochrane, Francis, Medline, Psychinfo, Saphir, Scopus and Web of science) as well as the grey literature. Studies published in French and English between 1995 and 2004 reporting end of life conflicts, tensions, disagreements, disputes in the context of palliative care. One hundred and two studies were included (87.2% published in English, 12.8% in French). Study designs include revues 27.4%), cross-sections 18.6% and case studies 18.6%. Reported conflicts are related to ethical issues 26.2%, to care 19.1%, to tensions between professionals and patients or families 11.1%, to team experiences 9%. Six studies 5.8% give prevalence figures of conflicts. Half of the studies 51.3% identify possible causes of conflicts: communication issues, euthanasia and suicide assistance demands, autonomy of patients, non respect of advance directives, cultural differences. Ten studies 9.8% identify specifically some effects of the conflicts: moral distress of patients; stress, burn out and guilt of health professionals; lack of trust between doctors and patients or families. Conflicts are mainly resolved through mediation and ethical discussions. Research data on end of life conflicts is scarce at all levels (quantity, quality, methods, social impact, and epistemology). A better understanding of end of life conflict might foster a more adequate management of difficult situations and ultimately a more peaceful death of patients, mourning of families and every day work of health professionals PMID:17020240
As a voluntary learning movement, adult education finds expression through a search for values. Continuing and community education provide support for both hospice and palliative care workers as well as families and friends of terminally ill persons in dealing with death and dying. (SK)
McKee, Nora; D’Eon, Marcel; Trinder, Krista
Introduction The objective of this article was to analyze the theory and pedagogical basis of the use of problem-based learning (PBL) for inter-professional education (IPE) in undergraduate health science education and present evidence from a palliative care iPBL (inter-professional PBL) module that confirms the importance of the two methodologies being used together. Methods More than 1000 student surveys collected over 4 years were analyzed for components of usefulness, enjoyment and facilitator effectiveness. A retrospective self-assessment of learning was used for both content knowledge of palliative care and knowledge of the other professions participating in the module. Results Statistically significant gains in knowledge were recorded in both areas assessed. Medical students reported lower gains in knowledge than those in other programs. On a scale of 0 to 6, mean scores were moderately high for usefulness (4.37) and facilitator effectiveness (5.19). Mean scores for enjoyment of the iPBL module were very high at 5.25. Conclusion There is strong theoretical and empirical evidence that PBL is a useful method to deliver IPE for palliative care education. With the evidence presented from the palliative care iPBL it is our contention that PBL inter-professional cases should be utilized more often, incorporated into IPE programs generally, and researched more rigorously. PMID:26451199
Rydé, Kerstin; Strang, Peter; Friedrichsen, Maria
Crying has not been studied from the perspective of family members of patients in palliative care. The aim of this study was to explore the significance of family members crying in a palliative care context with special reference to factors that influence crying. Interviews were carried out with 14 family members of patients admitted to palliative care. A hermeneutic approach according to Gadamer was used. Three main categories emerged. (1) Before the start of crying, some prerequisites for crying had to be fulfilled, such as an allowing attitude and courage, time, feeling secure, honesty, and trusting relationships. These prerequisites did not cause crying themselves; rather crying emerged when triggering factors occurred. (2) Triggers for crying were circumstances that created uncertainty and turbulence (bad news), exhaustion due to lack of own time, and sympathy from others. (3) Family members tried to do the best possible by adopting or hiding their crying, to ease the patient's burden and to create a positive counterbalance to suffering and grief. As an interpretation of the whole, crying could be expressed as being shared with someone for support and consolation or escape to solitude for integrity and respite. As a conclusion, crying may be an efficient strategy for family members in palliative care to express their suffering and to gain new energy to continue. PMID:18772658
Gilbert, Christopher R; Smith, Cecilia M
Advanced restrictive lung diseases remain a challenge for both the clinician and patient alike. Because there are few available treatment options that prolong survival for patients with diseases such as idiopathic pulmonary fibrosis, improvement in quality of life and palliation of significant symptoms become realistic treatment goals. Several validated instruments that assess quality of life and health-related quality of life have demonstrated the dramatic impact that lung disease has on patients. Quality-of-life assessments of patients with interstitial lung disease have commonly cited respiratory complaints as problematic, but other distressing symptoms often not addressed include fear, social isolation, anxiety, and depression. Not only do respiratory symptoms limit this patient population, but the awareness of decreased independence and ability for social participation also has an impact on the quality of life. Some patients describe a deepened spiritual well-being during their disease process; however, many patients' mental health suffers with experiences of fear, worry, anxiety, and panic. Many patients express desire for more attention to end-of-life issues from their physicians. Fears of worsening symptoms and suffocation exist with an expressed desire by most to die peacefully with symptom control. Interventions to improve quality of life are largely directed at symptom control. Pharmacologic and nonpharmacologic interventions have been helpful in relieving dyspnea. Studies have demonstrated that the use of supplemental oxygen in the face of advancing hypoxemia can have both positive and negative effects on quality of life. Patients using nasal prongs describe feelings of self-consciousness, embarrassment, and social withdrawal. Pulmonary rehabilitation is recommended, with some studies noting increased quality-of-life scores and decreased sensations of dyspnea. Sleep deprivation and poor sleep quality also have a negative impact on quality of life. Recognition and correction of nocturnal hypoxemia and other sleep disturbances should enhance quality of life in patients with restrictive lung disease; however, there is currently no evidence to support this claim. End-of-life care needs more attention by clinicians in the decision-making and preparatory phase. Physicians need to maintain their focus on quality-of-life issues as medical management shifts from curative therapies to comfort management therapies. Palliative care and hospice appear to be underused in patients with advanced diseases other than cancer. Because the only curative option for some end-stage restrictive lung diseases is lung transplantation, if transplantation is not an option, palliation of symptoms and hospice care may offer patients and families the opportunity to die with dignity and comfort. PMID:19170219
Billings, J A; Ferris, F D; Macdonald, N; Von Gunten, C
A working group on teaching palliative care in the home was convened at The National Consensus Conference on Medical Education for Care Near the End of Life. Our consensus statement includes: (1) a justification for education in the home; (2) general guidelines about teaching palliative care at this site; (3) identification of major barriers to training in the home, and some suggestions for overcoming these barriers; and (4) specific suggestions about how and what to teach. We find that the home is an excellent site for training in comprehensive palliative medicine. Housecalls afford an unusually rich and compelling opportunity to learn about the patient's and family's experience of severe illness and the impact of culture and environment on health care, and can have a broad humanizing effect on trainees. We propose that all medical students be familiar with this form of care. Trainees should learn the potential benefits and difficulties of managing terminal illness in the community, appreciate the role of health care teams in assuring safe, secure, high-quality care, and acquire the special knowledge, skills, and attitudes required for providing state-of-the-art palliative care for patients and families facing a terminal illness in the home, including for those dying at home. Instituting education in the home setting will require faculty development, support for more home visiting by physicians, and supervision of trainees in the home by other members of the health care team. Academic medical centers and hospice/home health agencies should collaborate to develop effective training programs. PMID:11596548
May, Peter; Garrido, Melissa M; Cassel, J Brian; Kelley, Amy S; Meier, Diane E; Normand, Charles; Stefanis, Lee; Smith, Thomas J; Morrison, R Sean
Patients with multiple serious conditions account for a high proportion of health care spending. Such spending is projected to continue to grow substantially as a result of increased insurance eligibility, the ever-rising cost of care, the continued use of nonbeneficial high-intensity treatments at the end of life, and demographic changes. We evaluated the impact of palliative care consultation on hospital costs for adults with advanced cancer, excluding those with dementia. We found that compared to usual care, the receipt of a palliative care consultation within two days of admission was associated with 22 percent lower costs for patients with a comorbidity score of 2-3 and with 32 percent lower costs for those with a score of 4 or higher. Earlier consultation was also found to be systematically associated with a larger cost-saving effect for all subsamples defined by multimorbidity. Given ongoing workforce shortages, targeting early specialist palliative care to hospitalized patients with advanced cancer and higher numbers of serious concurrent conditions could improve care while complementing strategies to curb the growth of health spending. PMID:26733700
Exley, Catherine; Field, David; Jones, Linda; Stokes, Tim
Primary care plays an important role in delivering care to people who are dying. However, providing palliative care to people dying with conditions other than cancer may be more problematic, because it may be more difficult to establish an exact prognosis or to identify their needs. This article draws on qualitative research, which explored the views of health professionals, patients and their carers about care provided at the end of life. Differences between the care of people with cancer and those with end-stage cardiorespiratory disease were found in four main areas: management and progression of disease, communication and information, health care in the community and awareness of dying. The research shows that even in PHCTs (primary health care teams) committed to the delivery of palliative care, people dying with end-stage cardiorespiratory disease are less likely than those with cancer to receive full, and easily understood, information, to be aware that they are dying or to receive district nursing care. There is an increasing call for palliative care to be extended to all, but further work is needed to develop appropriate packages of care for those dying with conditions other than cancer. PMID:15690872
Tibi-Lévy, Yaël; d'Hérouville, Daniel
The objective of this study was to develop an operational typology of patients hospitalised in palliative care units (PC units) and to characterize these populations. Prospective data were collected in four PC units over three-week periods, generating a sample of 139 cases. Five classes of patient were identified and described via a factorial analysis and a classification: metastatic cancers requiring significant psychological attention, terminally ill patients, ENT cancers, neurological diseases and elderly patients. A more detailed study revealed differences between metastatic cancers, younger patients, very dependent patients and the other patients. We present the sociodemographic, clinical and cost per patient profiles of each class of patient. Having access to a broader sample of PC units and of patients would allow for a more complete typology. PMID:15198138
Pawuk, Laura G; Schumacher, John E
A middle-aged man with lung cancer breathes more easily and reduces his need for pain medication after participating in music-focused relaxation. An 8-year-old boy with cancer writes songs and records a CD for his family. An elderly woman in the final stages of Alzheimer's who is no longer able to speak sings a few words of her favorite lullaby to her adult daughter. A much-loved grandmother dies peacefully as her family sings her favorite spiritual songs to the accompaniment of a music therapist's folk harp. These illustrations demonstrate the role that music therapy plays in attending to the physical, emotional, and spiritual needs of hospice and palliative care patients and families while respecting their dignity and celebrating their lives. PMID:20032730
Claxton-Oldfield, Stephen; Miller, Kathryn
The purpose of this study was to examine the attitudes of hospice palliative care (HPC) volunteers who provide in-home support (n = 47) and members of the community (n = 58) toward the issue of physician-assisted suicide (PAS). On the first part of the survey, participants responded to 15 items designed to assess their attitudes toward PAS. An examination of individual items revealed differences in opinions among members of both the groups. Responses to additional questions revealed that the majority of volunteers and community members (1) support legalizing PAS; (2) would choose HPC over PAS for themselves if they were terminally ill; and (3) think Canadians should place more priority on developing HPC rather than on legalizing PAS. The implications of these findings are discussed. PMID:24563028
Sims-Gould, Joanie; Wiersma, Elaine; Arseneau, Lise; Kelley, Mary Lou; Kozak, Jean; Habjan, Sonja; MacLean, Michael
This study holistically explores the experience of dying and end-of-life care for older persons with dementia in long-term care (LTC) from the perspective of care providers. Using a focused ethnography methodology, seven researchers interviewed LTC staff, residents' families, volunteers, management staff, and spiritual advisers/clergy over a five-day period. Research was guided by two key questions: What is the dying experience of people living in LTC from the perspective of different care providers? and, What are the salient issues in providing palliative care for elderly people dying in LTC? Based on a thematic analysis of verbatim data, three common themes were identified: tension between completing job tasks on time and "being there" for residents; the importance of family-like bonds between front-line staff and residents; and the importance of communication among staff and between staff and residents and their families at the end of life. Findings are discussed in relation to their implications for policies and practices that can support whole-person care and ultimately a good death for residents of LTC facilities. PMID:20718397
Kwon, Jung Hye; Hui, David; Chisholm, Gary; Hong, Woo Taik; Nguyen, Linh
Abstract Background Patient-reported barriers are an important obstacle to cancer pain management. For effective pain management, exploring patient-reported barriers and related factors is important. Objectives The study's objective is to determine factors associated with patient-reported barriers to cancer pain management. Method We conducted a secondary analysis of data from a prospective observational study examining opioid adherence in palliative care outpatients. We evaluated the association between high score on patient-reported barriers to cancer pain management, on the Barriers Questionnaire II (BQ-II), and patients' race, sex, smoking history, pain intensity, opioid dose, and depression. Results Of 196 patients evaluated (median age 55 years), 147 (75%) were white, 41 (21%) had gastrointestinal cancer, and 121 (62%) were receiving anticancer treatment when data were collected. The median pain score was 4 (interquartile range [IQR] 3–7); 98% were receiving strong opioids; and 63% were satisfied with their pain medication. The median Edmonton symptom assessment scale (ESAS) depression score was 1 (IQR 0–3). Mean (SD) BQ-II scores were 1.8 (0.9) for physiologic effects, 1.6 (0.9) for fatalism, 0.9 (0.9) for communication, 2.3 (1.1) for harmful effects, and 1.7 (0.8) in total. Only racial differences were associated with high total BQ-II score in multivariable analysis (R2=0.05, overall F test significance=0.02). Pain related factors including opioids dose, pain intensity, and satisfaction were not associated with high BQ-II score. Conclusion Patients receiving palliative care expressed low barriers to pain control. There were minimal associations of BQ-II score with demographics and clinical factors. PMID:23758527
Pollak, Kathryn I.; Jones, Jacqueline; Lum, Hillary D.; De La Cruz, Scott; Felton, Susanne; Gill, Arvin; Kutner, Jean S.
Context Although many have examined the role of motivational interviewing (MI) in diverse health care encounters, no one has explored whether patients and caregivers facing serious illnesses identify specific MI techniques as helpful. Objectives The aim of this pilot study was to describe how patients and caregivers perceived MI techniques in palliative care role-play encounters. Methods About 21 patients and caregivers participated in a role-play encounter where we asked the participant to act out being ambivalent or reluctant regarding the goals of care decision. The participant met with either an MI-trained physician or a physician who was not trained in MI (usual care). After the simulated encounter, we conducted cognitive interviews (“think-aloud” protocol) asking participants to identify “helpful” or “unhelpful” things physicians said. Participants also completed a perceived empathy instrument as a fidelity test of the MI training of the physician. Results Qualitative analyses revealed that participants independently identified the following helpful communication elements that are consistent with core MI techniques: reflection and validation of values, support of autonomy and flexibility, and open questions acting as catalysts for discussion. Participants rated the MI-trained physician slightly higher on the perceived empathy scale. Conclusion This pilot study represents the first exploration of patient and caregiver perceptions of helpful techniques in palliative care conversations. Use of MI techniques shows promise for improving palliative care discussions. PMID:25701055
Hjermstad, Marianne Jensen; Kolflaath, Jan; Løkken, Aud O; Hanssen, Sjur B; Normann, Are P; Aass, Nina
Objectives Patients with advanced cancer are often admitted to hospital as emergency cases. This may not always be medically indicated. Study objectives were to register the reasons for the emergency admissions, to examine interventions performed during hospitalisation and self-reported symptom intensity at admission and discharge, and to assess patients’ opinions about the admission. Design This was a descriptive before-and-after study. Participating patients completed the Edmonton Symptom Assessment System (ESAS) twice, upon hospital admission and prior to discharge. All patients underwent a structured interview assessing their opinion about the emergency admission. Medical data were obtained from the hospital records. Setting The study was performed in two Norwegian acute care secondary hospitals with urban catchment areas. Participants 44 patients with cancer (men 27 and women 17; mean age 69.2, SD 9.2) representing 50 emergency admissions were included. Results Median length of stay was 7?days (95% CI 7.4 to 11.4). Median survival was 50?days (95% CI 51 to 115). 90% were admitted from home, and 46% had been hospitalised less than 1?month earlier. Lung and gastrointestinal symptoms and pain were the most frequent reasons for admissions. Mean pain scores on ESAS were reduced by 50% from admission to discharge (p<0.01). Simple interventions such as hydration, bladder catheterisation and oxygen therapy were most frequent. Nearly one-third would have preferred treatment at another site, provided that the quality of care was similar. Home visits by the family doctor and specialised care teams were perceived by patients as important to prevent hospitalisation. Conclusions In most emergency admissions, relatively simple medical interventions are necessary. Specialised care teams with palliative care physicians, easier access to the family doctor and better lines of cooperation between hospitals and the primary care sector may make it possible to perform more of these procedures at home, thereby reducing the need for emergency admissions. PMID:23793662
Gill, Anne C.; Teal, Cayla R.; Morrison, Laura J.
Abstract Background Medical education leaders have called for a curriculum that proactively teaches knowledge, skills, and attitudes required for professional practice and have identified professionalism as a competency domain for medical students. Exposure to palliative care (PC), an often deeply moving clinical experience, is an optimal trigger for rich student reflection, and students' reflective writings can be explored for professional attitudes. Objective Our aim was to evaluate the merit of using student reflective writing about a PC clinical experience to teach and assess professionalism. Methods After a PC patient visit, students wrote a brief reflective essay. We explored qualitatively if/how evidence of students' professionalism was reflected in their writing. Five essays were randomly chosen to develop a preliminary thematic structure, which then guided analysis of 30 additional, randomly chosen essays. Analysts coded transcripts independently, then collaboratively, developed thematic categories, and selected illustrative quotes for each theme and subtheme. Results Essays revealed content reflecting more rich information about students' progress toward achieving two professionalism competencies (demonstrating awareness of one's own perspectives and biases; demonstrating caring, compassion, empathy, and respect) than two others (displaying self-awareness of performance; recognizing and taking actions to correct deficiencies in one's own behavior, knowledge, and skill). Conclusions Professional attitudes were evident in all essays. The essays had limited use for formal summative assessment of professionalism competencies. However, given the increasing presence of PC clinical experiences at medical schools nationwide, we believe this assessment strategy for professionalism has merit and deserves further investigation. PMID:23937062
Blankenstein, Annette H; Schweitzer, Bart PM; Knol, Dirk L; van der Horst, Henriëtte E; Aaronson, Neil K; Deliens, Luc
Background: Although communicating effectively with patients receiving palliative care can be difficult, it may contribute to maintaining or enhancing patients’ quality of life. Little is known about the effect of training general practitioners in palliative care–specific communication. We hypothesized that palliative care patients of general practitioners exposed to the ‘Availability, Current issues and Anticipation’ communication training programme would report better outcomes than patients of control general practitioners. Aim: To evaluate the effectiveness of the Availability, Current issues and Anticipation training programme for general practitioners on patient-reported outcomes. Design: In a controlled trial, general practitioners followed the Availability, Current issues and Anticipation programme or were part of the control group. Patients receiving palliative care of participating general practitioners completed the Palliative Care Outcome Scale, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative, the Rest & Peace Scale, the Patient Satisfaction Questionnaire–III and the Availability, Current issues and Anticipation Scale, at baseline and 12 months follow-up. We analysed differences between groups using linear mixed models. Trial registration: ISRCTN56722368. Setting/participants: General practitioners who attended a 2-year Palliative Care Training Course in the Netherlands. Results: Questionnaire data were available for 145 patients (89 in intervention and 56 in control group). We found no significant differences over time between the intervention and control groups in any of the five outcome measures. Ceiling effects were observed for the Rest & Peace Scale, Patient Satisfaction Questionnaire–III and Availability, Current issues and Anticipation Scale. Conclusion: General practitioner participation in the Availability, Current issues and Anticipation training programme did not have a measurable effect on any of the outcomes investigated. Patients reported high levels of satisfaction with general practitioner care, regardless of group assignment. Future research might focus on general practitioners without special interest in palliative care. PMID:24951633
Merlino, James I; Raman, Ananth
The Cleveland Clinic has long had a reputation for medical excellence. But in 2009 the CEO acknowledged that patients did not think much of their experience there and decided to act. Since then the Clinic has leaped to the top tier of patient-satisfaction surveys, and it now draws hospital executives from around the world who want to study its practices. The Clinic's journey also holds Lessons for organizations outside health care that must suddenly compete by creating a superior customer experience. The authors, one of whom was critical to steering the hospital's transformation, detail the processes that allowed the Clinic to excel at patient satisfaction without jeopardizing its traditional strengths. Hospital leaders: Publicized the problem internally. Seeing the hospital's dismal service scores shocked employees into recognizing that serious flaws existed. Worked to understand patients' needs. Management commissioned studies to get at the root causes of dissatisfaction. Made everyone a caregiver. An enterprisewide program trained everyone, from physicians to janitors, to put the patient first. Increased employee engagement. The Clinic instituted a "caregiver celebration" program and redoubled other motivational efforts. Established new processes. For example, any patient, for any reason, can now make a same-day appointment with a single call. Set patients' expectations. Printed and online materials educate patients about their stays--before they're admitted. Operating a truly patient-centered organization, the authors conclude, isn't a program; it's a way of life. PMID:23898737
Sankaran, Biji M; Chakraborty, Santam; Patil, Vijay M; Raghavan, Sindhu N; Thomas, Shibimol; Sen, Subhradev
Aim: To report the prevalence and outcomes of pressure ulcers (PU) seen in a cohort of cancer patients requiring home-based palliative care. Materials and Methods: All patients referred for home care were eligible for this prospective observational study, provided they were living within a distance of 35 km from the institute and gave informed consent. During each visit, caregivers were trained and educated for providing nursing care for the patient. Dressing material for PU care was provided to all patients free of cost and care methods were demonstrated. Factors influencing the occurrence and healing of PUs were analyzed using logistic regression. Duration for healing of PU was calculated using the Kaplan Meier method. P < 0.05 are taken as significant. Results: Twenty-one of 108 (19.4%) enrolled patients had PU at the start of homecare services. None of the patients developed new PU during the course of home care. Complete healing of PU was seen in 9 (42.9%) patients. The median duration for healing of PU was found to be 56 days. Median expenditure incurred in patients with PU was Rs. 2323.40 with a median daily expenditure of Rs. 77.56. Conclusions: The present model of homecare service delivery was found to be effective in the prevention and management of PUs. The high prevalence of PU in this cohort indicates a need for greater awareness for this complication. Clinical Trial Registry Number: CTRI/2014/03/004477 PMID:26009667
Kumar, Senthil P
Mechanism-based classification and physical therapy management of pain is essential to effectively manage painful symptoms in patients attending palliative care. The objective of this review is to provide a detailed review of mechanism-based classification and physical therapy management of patients with cancer pain. Cancer pain can be classified based upon pain symptoms, pain mechanisms and pain syndromes. Classification based upon mechanisms not only addresses the underlying pathophysiology but also provides us with an understanding behind patient's symptoms and treatment responses. Existing evidence suggests that the five mechanisms – central sensitization, peripheral sensitization, sympathetically maintained pain, nociceptive and cognitive-affective – operate in patients with cancer pain. Summary of studies showing evidence for physical therapy treatment methods for cancer pain follows with suggested therapeutic implications. Effective palliative physical therapy care using a mechanism-based classification model should be tailored to suit each patient's findings, using a biopsychosocial model of pain. PMID:21976851
Beccaro, M; Gollo, G; Ceccon, S; Giordano, M; Salvini, E; Vignali, S; Costantini, M; Di Leo, Silvia
This study was aimed at piloting a school-based intervention on severe illness, within a project focused on spreading knowledge of palliative care among high school students (phases 0-2 Medical Research Council Framework). The intervention entailed the screening of a topic-related movie, 2 classroom meetings, and the development of a class-based multimedia production. Five classes from 5 high schools participated in this study, and a before-after evaluation was used to assess intervention feasibility and impact. Valid questionnaires were filled in by 84% (before) and 79% (after) of the 89 students. Concerning students' knowledge on palliative care, the after evaluation showed a significantly higher paired proportions of students reporting on "improving patient quality of life" and "life-threatening illness." Intervention components were deemed helpful by students, and positive feedback on the experience was given. PMID:24928837
Otis-Green, Shirley; Sidhu, Rupinder K.; Ferraro, Catherine Del; Ferrell, Betty
Lung cancer patients and their family caregivers face a wide range of potentially distressing symptoms across the four domains of quality of life. A multi-dimensional approach to addressing these complex concerns with early integration of palliative care has proven beneficial. This article highlights opportunities to integrate social work using a comprehensive quality of life model and a composite patient scenario from a large lung cancer educational intervention National Cancer Institute-funded program project grant. PMID:24797998
Reid, M. Carrington; Shengelia, Rouzi; Adelman, Ronald D.
Abstract Objectives To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. Design Descriptive thematic analysis. Setting : Multinational studies were conducted in both the outpatient and inpatient setting. Measurements Extensive bibliographic searches (January 1, 1998 to July 31, 2009) of English-language literature involving physician–patient (or physician–family) interactions were conducted and augmented by reviews of reference listings. Three investigators independently abstracted key information from each article. Results Of the 20 retained articles, most enrolled young-old participants (mean age, 60 years) who were white and had a cancer diagnosis. Patient/family participation rates ranged from 68% to 89% demonstrating feasibility of this approach when studying palliative/end-of-life care communication issues. Four common themes were identified: (1) physicians focus on medical/technical and avoid emotional/quality of life issues; (2) sensitive topics are perceived by physicians to take longer to discuss and often do take longer to discuss; (3) physicians dominate discussions; and (4) patient/family satisfaction is associated with supportive physician behaviors. Conclusions This study demonstrates that direct observation methods can be feasibly used when studying physician–patient/physician–family communication in palliative/end-of-life care, but few investigations have utilized this approach. This article highlights areas that need improvement, including physicians' ability to address patient/family emotional issues and provide what patients and families find most satisfying (participation and support). A particular focus on older patients and patients with end-stage or late-stage chronic (noncancer) illness, the adaptation/application of existing communication measurement tools to capture palliative care communication issues, and development of corresponding outcome measures to assess impact is now needed. PMID:20491550
Lyons, Kathleen Doyle; Bakitas, Marie; Hegel, Mark T; Hanscom, Brett; Hull, Jay; Ahles, Tim A
The Functional Assessment of Chronic Illness Therapy (FACIT) system provides a general, multidimensional measure of health-related quality of life (FACT-G) that can be augmented with disease or symptom-specific subscales. The 19-item palliative care subscale of the FACIT system has undergone little psychometric evaluation to date. The aim of this paper is to report the internal consistency, factor structure, and construct validity of the instrument using the palliative care subscale (FACIT-Pal). Two hundred fifty-six persons with advanced cancer in a randomized trial testing a palliative care psychoeducational intervention completed the 46-item FACIT-Pal at baseline. Internal consistency was greater than 0.74 for all subscales and the total score. Seventeen of the 19 palliative care subscale items loaded onto the four-factor solution of the established core measure (FACT-G). As hypothesized, total scores were correlated with measures of symptom intensity (r=-0.73, P<0.001) and depression (r=-0.75, P<0.001). The FACIT-Pal was able to discriminate between participants who died within three months of completing the baseline and participants who lived for at least one year after completing the baseline assessment (t=-4.05, P<0.001). The functional well-being subscale discriminated between participants who had a Karnofsky performance score of 70 and below and participants with a Karnofsky performance score of 80 and above (t=3.40, P<0.001). The findings support the internal consistency reliability and validity of the FACIT-Pal as a measure of health-related quality of life for persons with advanced cancer. PMID:18504093
Baudoin, D; Krebs, S
This article describes how a mobile team of palliative care and a department of neurology learned to cope with many complex end-of-life situations. After a brief introduction to inter-team cooperation, clinical work of the mobile team with patients and families and its cooperation with the neurology team are presented. The specificity of supportive care in neurology is also analyzed. Two interdisciplinary and multi-professional tools - the Palliative Care Resource Group and the Ethics Consultation Group - are described, with their activities and their goals. The Palliative Care Resource Group is a specific entity whose identity lies at the crossroads between commonly recognized organizational units: clinic staff, clinical practice, ethical or organizational analysis groups (Balint, 1960), discussion groups (Rusznievski, 1999), training groups. It has several objectives: 1) create a robust conceptual environment enabling the pursuit of palliative care practices without relying on the empty paradigm of stereotypical actions; if suffering cannot be avoided, psychic development and transformation can be promoted; 2) attempt to prevent caregiver burnout; 3) help support and strengthen the collective dimension of the team, learning a mode of care which goes beyond the execution of coded actions; 4) enhance the primary dimension of care, i.e. taking care, especially in clinical situations where conventional wisdom declares that "nothing more can be done."; 5) promote group work so new ideas arising from the different teams influence the behavior of all caregivers. The Ethics Consultation Group organizes its work in several steps. The first step is discernment, clearly identifying the question at hand with the clinical staff. This is followed by a consultation between the clinical team, the patient, the family and the referring physician to arrive at a motivated decision, respecting the competent patient's opinion. The final step is an evaluation of the decision and its consequences. The Ethical Consultation Group, which meets at a scheduled time at a set place, unites the different members of the neurology and palliative care teams who come to a common decision. These specific moments have an important impact on team cohesion, creating a common culture and a convergence of individual representations about making difficult decisions. Specific clinical cases are described to illustrate some of the difficulties encountered in palliative care decision-making. These cases provide insight about the decision to create a palliative care gastrostomy for a man with progressive supranuclear palsy, the suffering experienced by a medical team caring for a young woman with Creutzfeldt-Jacob encephalopathy, or a woman's experience with the post-stroke life-and-death seesaw. Theoretical divisions, illustrated with clinical stories, can be useful touchstones for neurology teams. PMID:23453274
Rayner, Lauren; Price, Annabel; Hotopf, Matthew; Higginson, Irene J
Depression is common in cancer patients, particularly those with advanced disease. It is associated with adverse outcomes such as increased pain, disability and poorer prognosis. Our aim was to produce a European evidence-based clinical guideline on the management of depression in patients receiving palliative care to inform practice, establish policy, promote European consensus and ultimately improve patient outcomes. Recommendations were devised using the best available evidence. Where evidence was absent or equivocal, Delphi consensus methods were implemented to elicit and refine expert opinion. Evidence was graded according to the process proposed by GRADE. The resulting guideline has three main sections: (1) prevention; (2) detection, diagnosis and assessment; and (3) treatment. The prevention section outlines strategies such as optimal palliative care and support, effective communication and information-giving. The detection section provides recommendations on symptoms, screening, diagnosis and severity assessment. The treatment section gives guidance on treatment decisions including choice of psychological therapy and antidepressant medication. This is the first comprehensive, evidence-based guideline on managing depression in palliative care. It has the potential to improve patient outcomes by enabling clinicians to access and implement evidence-based knowledge quickly and easily. PMID:21211961
Gardner, Daniel S; Gerbino, Susan; Walls, Jocelyn Warner; Chachkes, Esther; Doherty, Meredith J
As Americans live longer with chronic illnesses, there is a growing need for social workers with the knowledge and skills to deliver quality palliative care to older adults and their families. Nevertheless, there remains a critical shortage of social workers prepared to provide quality palliative and end-of-life care (PELC) and to maintain the field into the next generation. Formal mentorship programs represent an innovative approach to enhancing practice, providing support and guidance, and promoting social work leadership in the field. This article reviews the literature on mentorship as an approach to professional and leadership development for emerging social workers in PELC. The Zelda Foster Studies Program in Palliative and End-of-Life Care bolsters competencies and mentors social workers in PELC over the trajectory of their careers, and enhances the capacity in the field. Findings from the first six years of two components of the ZF Program are examined to illustrate the feasibility, benefits, and challenges of formal mentorship programs. The authors describe the background, structure, and evaluation of the initiative's mentorship programs, and discuss the implications of mentorship in PELC for social work education, practice, and research. PMID:26380922
Noble, Bill; George, Rob; Vedder, Rachel
In palliative care, where interactions cross clinical, pathological, psychological, social and spiritual considerations, it may be useful to take a minimal approach and avoid an overcomplicated or formulaic structure for the consultation. We will concern ourselves with points in the encounter where doctor and patient with or without family or carers need to be in agreement. Whether a consultation is based on a structured interview, a cue-based assessment or a narrative approach, the points of agreement or concordance need to cover four key areas; missing any of these has grave consequences for the clinical relationship. Without concordance, patients may be right to conclude that you don't know why you're all there (context), you don't know what's the matter (issues), you don't know what's going on (story) or you don't know what you're doing (plan). These four elements may serve also as a guide to the quality and effectiveness of an encounter among a doctor, patient and carers. We consider how this clinical method might integrate the nosological practices of doctors in palliative care services better, and we argue that finding concordance is likely to establish a better doctor-patient relationship at a human and professional level through empathy and trust rather than just a technical exchange. PMID:24644197
van der Plas, Annicka G. M.; Vissers, Kris C.; Francke, Anneke L.; Donker, Gé A.; Jansen, Wim J. J.; Deliens, Luc; Onwuteaka-Philipsen, Bregje D.
Background Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse. Objectives To compare cancer patients with and without additional support from a case manager on: 1) the patients’ general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes. Methods This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013. Results The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care. Conclusions Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is ‘only’ advisory and he or she does not provide hands-on care or prescribe medication. PMID:26208099
During the twentieth-century, dramatic changes in the manner and location of care for the dying resulted in the conception and birth of the modern American hospice movement. Idealistic nurses, clergy, and others concerned about the plight of terminally ill cancer patients launched hospice as a necessary health care reform. As new hospice programs opened across the country, the idealism of the early leaders gave way to more pragmatic issues such as program viability. As hospice was studied and integrated into the health care system, it came to be redefined by the politics of health policy and the health care industry. As a result, there is a disarticulation between the needs of seriously ill persons and their families and the health care that is available to them. Important lessons can be learned from the history of the Medicare hospice benefit to help guide current palliative care policy initiatives. While formalized reimbursement for hospice enhanced organizational sustainability, many critical issues remain. PMID:22184500
Liao, Guo-Shiou; Shyur, Lie-Fen
Breast cancer is a life-threatening disease among women worldwide with annual rates of reported incidence and death increasing alarmingly. Chemotherapy is a recommended and effective treatment option for breast cancer; however, the narrow therapeutic indices and varied side effects of currently approved drugs present major hurdles in increasing its effectiveness. An increasing number of literature evidence indicate that complementary and alternative medicine (CAM) used in treatment-related symptom control and alleviation of side effects plays an important role in increasing survival rate and quality of life in breast cancer patients. This review focuses on the use of herbal medicines and acupuncture in palliative care and as adjuvants in the treatment of breast cancer. Herbal medicinal treatments, the correlation of clinical use with demonstrated in vitro and in vivo mechanisms of action, and the use of certain acupoints in acupuncture are summarized. The aim of this review is to facilitate an understanding of the current practice and usefulness of herbal medicine and acupuncture as adjuvants in breast cancer therapy. PMID:23840256
This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork from children are included in the text to help demonstrate some feelings and reactions to illness. Some themes, which emerged from examination of the artwork, were isolation, anger, and lack of hope. Carers became overtly aware of the distress people were experiencing through artwork. Art depicted graphically what people were feeling and can, therefore, be considered a valuable tool in the communication process. It is useful especially when individuals are unable to express their feelings verbally. Recommendations focus on how artwork may be implemented in hospice and hospital settings and on how the environment may be made safe psychologically. The importance of the art process rather than on artistic skill is discussed. The potential for developing creativity at the end of life, when self-esteem may be low is explored. PMID:16493300
Richards, Christopher T.; Chang, Chih-Hung; Courtney, D. Mark; Engel, Kirsten G.; Emanuel, Linda; Quest, Tammie
Abstract Objective We sought to develop and validate a novel palliative medicine needs assessment tool for patients with cancer in the emergency department. Methods An expert panel trained in palliative medicine and emergency medicine reviewed and adapted a general palliative medicine symptom assessment tool, the Needs at the End-of-Life Screening Tool. From this adaptation a new 13-question instrument was derived, collectively referred to as the Screen for Palliative and End-of-life care needs in the Emergency Department (SPEED). A database of 86 validated symptom assessment tools available from the palliative medicine literature, totaling 3011 questions, were then reviewed to identify validated test items most similar to the 13 items of SPEED; a total of107 related questions from the database were identified. Minor adaptations of questions were made for standardization to a uniform 10-point Likert scale. The 107 items, along with the 13 SPEED items were randomly ordered to create a single survey of 120 items. The 120-item survey was administered by trained staff to all patients with cancer who met inclusion criteria (age over 21 years, English-speaking, capacity to provide informed consent) who presented to a large urban academic emergency department between 8:00 am and 11:00 pm over a 10-week period. Data were analyzed to determine the degree of correlation between SPEED items and the related 107 selected items from previously validated tools. Results A total of 53 subjects were enrolled, of which 49 (92%) completed the survey in its entirety. Fifty-three percent of subjects were male, age range was 24–88 years, and the most common cancer diagnoses were breast, colon, and lung. Cronbach coefficient ? for the SPEED items ranged from 0.716 to 0.991, indicating their high scale reliability. Correlations between the SPEED scales and related assessment tools previously validated in other settings were high and statistically significant. Conclusion The SPEED instrument demonstrates reliability and validity for screening for palliative care needs of patients with cancer presenting to the emergency department. PMID:21548790
Feddersen, Berend; Führer, Monika; Borasio, Gian Domenico
Abstract Objective: To compare the provision of specialized home palliative care (SHPC) by the adult and pediatric SHPC teams at the Munich University Hospital. Methods: All patients treated by one of the SHPC teams and their primary caregivers were eligible for the prospective nonrandomized survey. We analyzed the demographics, the underlying diseases, duration and impact of SHPC on symptom control and quality of life (QOL) as well as the caregivers' burden and QOL. Results: Between April 2011 and June 2012, 100 adult and 43 pediatric patients were treated consecutively; 60 adults (median age, 67.5 years; 55% male) and 40 children (median age, 6 years, 57% male) were included in the study. Oncologic diseases were dominant only in the adult cohort (87 versus 25%, p<0.001). The median period of care was higher in the pediatric sample (11.8 versus 4.3 weeks; NS). Ninety-five percent of adult and 45% of pediatric patients died by the end of the study (p<0.001), 75% and 90% of them at home, respectively. The numbers of significant others directly affected by the patient's disease was higher in children (mean 3.4 versus 1.2; p<0.001). The QOL of adult patients and children (p<0.05 for both), as well as of their primary caregivers (p<0.001 for both) improved during SHPC, while the caregivers' burden was lowered (p<0.001 for both). Conclusions: Our results show important differences in several clinically relevant parameters between adults and children receiving SHPC. This should assist in the development of age-group specific SHPC concepts that effectively address the specific needs of each patient population. PMID:24926957
Mabude, Z A; Beksinska, M E; Ramkissoon, A; Wood, S; Folsom, M
The objective of this study was to assess home-based care (HBC) kits and programs in South Africa to evaluate the feasibility of scaling up kit production and distribution. South African HBC organizations received structured questionnaires; key informant interviews and a literature review were completed to assess systems for production, distribution and supply of HBC kits. Meetings with stakeholders were held in two Provinces to share and analyze the study findings. The study team distributed questionnaires to 466 organizations and conducted interviews with representatives from 45 organizations, the Provincial Department of Health (DoH) and manufacturers of kits. All identifiable HBC organizations in South Africa were included in the survey. As a result 215 HBC organizations returned questionnaires; including non-governmental organizations (56%), community-based organizations (32%) and organizations affiliated with government health departments. Two types of kits were available: a home kit and a professional kit. The demand for HBC kits exceeded availability, kit contents and availability varied considerably and the supply chain was irregular. Kit production and distribution systems were fragmented. Replenishment of kit items was problematic. End-users are mostly caregivers who have not received adequate training on their use. The study shows that substantial work has been done by HBC organizations in South Africa to respond to the need for palliative care supplies within resource constraints. The growing demand for kits exceeds the supply. There is a need to improve the supply chain management of HBC kits, strengthen referral systems and links between community-based organizations and government departments, expand training opportunities for care givers, and develop monitoring and evaluation systems. PMID:18608083
Chang, Andrew; Roeland, Eric J; Atayee, Rabia S; Revta, Carolyn; Ma, Joseph D
Opioids are used to treat breakthrough cancer pain (BTCP) and can be classified by relative duration and onset of action. Regulatory approvals of numerous transmucosal immediate-release fentanyl (TIRF) formulations provide alternative options to palliative care-trained providers in the management of BTCP. TIRFs have been formulated as a sublingual tablet, sublingual spray, intranasal spray, pectin-based nasal spray, buccal tablet, and buccal soluble film. Differences exist between TIRFs regarding formulation design and dosing to treat BTCP. Opportunities for use include palliation of BTCP in head and neck cancer and/or radiation-induced mucositis. The purpose of this review is to discuss TIRF formulation and dosing, pharmacokinetics, clinical efficacy, patient acceptability, and safety/tolerability. In addition, barriers to TIRF utilization will be discussed. PMID:26368648
Rosoff, Philip M
In the event of a widespread health catastrophe in which either or both human and material resources were in critically short supply, rationing must take place, especially if the scarcity will last for some time. There are several tested allocation methods that are routinely used during emergencies. These include triage procedures employed by emergency departments and the military on the battlefield. The goal is to save the lives of as many as possible. When it is not possible to save all, or even most, who come for care, what should be done, if anything, with those whose fate is death? The central tenet and goal of medicine is the relief of suffering. If we take this seriously as an axiom of practice, then healthcare providers and the institutions in which they work are duty-bound to provide comfort and relief to all, especially the dying. There are several ways this can be done. One is to prepare by training sufficient individuals to provide what might be called emergency palliative care. These people do not all have to be doctors but could (and should) include people from a range of backgrounds including nursing, allied health, pastoral care, and social work. For them to be able to do their jobs effectively, some basic supplies should be stockpiled so the pain and suffering associated with untreated illness and injury can be relieved. However, what happens when there is a shortage of, say, opiates, so that relief of air hunger and pain cannot be eased? Then critical decisions must be made. Alternative sources of symptom relief not considered under ordinary circumstances might be used. However, it is possible to imagine a situation when all resources are in critically short supply. Those remaining resources, logically and morally, should be allocated to persons who can survive. In this scenario, what can be offered to the suffering dying? This might depend on the attitude of personnel caring for patients. In desperate circumstances, it is possible the proscription against active euthanasia could be justifiably overridden by concern for ongoing, relentless, and unmitigated suffering. Any justification that could be made for such action would be undermined by arbitrary or capricious administration. Thus, preparation for a catastrophic healthcare emergency should take into account all conceivable outcomes. PMID:21313865
Maloney, Cristine; Lyons, Kathleen Doyle; Li, Zhongze; Hegel, Mark; Ahles, Tim A.; Bakitas, Marie
Background ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known about how participants experience early palliative care and the benefits and burdens of participating in a palliative care clinical trial. Aim To gain a deeper understanding of participants’ perspectives about the intervention and palliative care trial participation. Design A qualitative descriptive study using thematic analysis to determine benefits and burdens of a new palliative care intervention and trial participation. Setting/Participants Of the 72 participants who were alive when the study commenced, 53 agreed to complete an in-depth, semi-structured interview regarding the ENABLE II intervention and clinical trial participation. Results Participants’ perceptions of intervention benefits were represented by four themes: enhanced problem-solving skills, better coping, feeling empowered, and feeling supported or reassured. Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve. Conclusions The benefits of the intervention and the positive aspects of trial participation outweighed trial “burdens”. This study raises additional important questions relevant to future trial design and intervention development: when should a palliative care intervention be initiated and what aspects of self-care and healthy living should be offered in addition to palliative content for advanced cancer patients when they are feeling well? PMID:22573470
Alexander, Carla S; Memiah, Peter; Henley, Yvonne B; Kaiza-Kangalawe, Angela; Shumbusho, Anna Joyce; Obiefune, Michael; Enejoh, Victor; Stanis-Ezeobi, Winifred; Eze, Charity; Odion, Ehekhaye; Akpenna, Donald; Effiong, Amana; Miriti, Kenneth; Aduda, Samson; Oko, John; Melaku, Gebremedhin D; Baribwira, Cyprien; Umutesi, Hassina; Shimabale, Mope; Mugisa, Emmanuel; Amoroso, Anthony
To combat morbidity and mortality from the worldwide epidemic of the human immunodeficiency virus (HIV), the United States Congress implemented a President's Emergency Plan for AIDS Relief (PEPFAR) in 30 resource-limited countries to integrate combination antiretroviral therapy (ART) for both prevention and cure. Over 35% of eligible persons have been successfully treated. Initial legislation cited palliative care as an essential aspect of this plan but overall health strengthening became critical to sustainability of programming and funding priorities shifted to assure staffing for care delivery sites; laboratory and pharmaceutical infrastructure; data collection and reporting; and financial management as individual countries are being encouraged to assume control of in-country funding. Given infrastructure requisites, individual care delivery beyond ART management alone has received minimal funding yet care remains necessary for durable viral suppression and overall quality of life for individuals. Technical assistance staff of one implementing partner representing seven African countries met to clarify domains of palliative care compared with the substituted term "care and support" to understand potential gaps in on-going HIV care. They prioritized care needs as: 1) mental health (depression and other mood disorders); 2) communication skills (age-appropriate disclosure of HIV status); 3) support of care-providers (stress management for sustainability of a skilled HIV workforce); 4) Tied Priorities: symptom management in opportunistic infections; end-of-life care; spiritual history-taking; and 5) Tied Priorities: attention to grief-related needs of patients, their families and staff; and management of HIV co-morbidities. This process can inform health policy as funding transitions to new priorities. PMID:21998442
Yount, Susan E.; Szmuilowicz, Eytan; Hutchison, Paul J.; Rosenberg, Sharon R.; Kalhan, Ravi
Rationale: Patients with chronic obstructive pulmonary disease (COPD) have high symptom burdens and poor health-related quality of life. The American Thoracic Society issued a consensus statement outlining the need for palliative care for patients with chronic respiratory diseases. A better understanding of the unmet healthcare needs among patients with COPD may help determine which aspects of palliative care are most beneficial. Objectives: To identify the unmet healthcare needs of patients with COPD hospitalized for exacerbation using qualitative methods. Methods: We conducted 20 semistructured interviews of patients admitted for acute exacerbations of COPD focused on patient understanding of diagnosis and prognosis, effect of COPD on daily life and social relationships, symptoms, healthcare needs, and preparation for the end of life. Transcribed interviews were evaluated using thematic analysis. Measurements and Main Results: Six themes were identified. (1) Understanding of disease: Most participants correctly identified their diagnosis and recognized their symptoms worsening over time. Only half understood their disease severity and prognosis. (2) Symptoms: Breathlessness was universal and severe. (3) Physical limitations: COPD prevented participation in activities. (4) Emotional distress: Depressive symptoms and/or anxiety were present in most participants. (5) Social isolation: Most participants identified social limitations and felt confined to their homes. (6) Concerns about the future: Half of participants expressed fear about their future. Conclusions: There are many unmet healthcare needs among patients hospitalized for COPD exacerbation. Relief of symptoms, physical limitations, emotional distress, social isolation, and concerns about the future may be better managed by integrating specialist palliative care into our current care model. PMID:25302521
Mitsumoto, Hiroshi; Rabkin, Judith G
Amyotrophic lateral sclerosis (ALS) is a devastating terminal neurodegenerative disease with a highly predictable clinical course such that palliative care should begin at or soon after diagnosis. The outcome is certain in most cases. The only medication approved for treatment in the United States, riluzole, extends life by about 2 months. Virtually all skeletal muscles eventually are affected. Multiple problems require a multidisciplinary approach including aggressive symptomatic management, rehabilitation to maintain motor function, nutritional and respiratory support, augmentative communication devices, and psychological support for both patients and families because family members so often play a central role in management and care. Social, bioethical, and financial issues as well as advance directives should be addressed long before enteral feeding or assistive ventilatory support might be considered. Goals of care should be assessed on an ongoing basis. Presenting the unusual case of a patient with ALS who is also a prominent neurologist specializing in ALS, we enumerate issues in management and palliative care applicable to ALS but also to other fatal, progressive neurologic diseases such as Huntington's chorea and late-stage Parkinson disease. PMID:17622602
Hexem, Kari R.; Mollen, Cynthia J.; Carroll, Karen; Lanctot, Dexter A.
Abstract Background How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described. Methods Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times. Responses were coded and thematically organized utilizing qualitative data analysis methods. Any discrepancies amongst coders regarding codes or themes were resolved through discussion that reached consensus. Results Most parents of children receiving palliative care felt that RSLP was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents, however, did not wish to discuss the topic at all. For those who described their RSLP, their beliefs and practices were associated with qualities of their overall outlook on life, questions of goodness and human capacity, or that “everything happens for a reason.” RSLP was also important in defining the child's value and beliefs about the child's afterlife. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices influenced their perspectives on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt they received support from both their spiritual communities and from God, peace and comfort, and moral guidance. Some parents, however, also reported questioning their faith, feelings of anger and blame towards God, and rejecting religious beliefs or communities. Conclusions RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care. PMID:21244252
Olson, Karin; Hayduk, Leslie; Cree, Marilyn; Cui, Ying; Quan, Hue; Hanson, John; Lawlor, Peter; Strasser, Florian
Background Symptoms tend to occur in what have been called symptom clusters. Early symptom cluster research was imprecise regarding the causal foundations of the coordinations between specific symptoms, and was silent on whether the relationships between symptoms remained stable over time. This study develops a causal model of the relationships between symptoms in cancer palliative care patients as they approach death, and investigates the changing associations among the symptoms and between those symptoms and well-being. Methods Complete symptom assessment scores were obtained for 82 individuals from an existing palliative care database. The data included assessments of pain, anxiety, nausea, shortness of breath, drowsiness, loss of appetite, tiredness, depression and well-being, all collected using the Edmonton Symptom Assessment System (ESAS). Relationships between the symptoms and well-being were investigated using a structural equation model. Results The model fit acceptably and explained between 26% and 83% of the variation in appetite, tiredness, depression, and well-being. Drowsiness displayed consistent effects on appetite, tiredness and well-being. In contrast, anxiety's effect on well-being shifted importantly, with a direct effect and an indirect effect through tiredness at one month, being replaced by an effect working exclusively through depression at one week. Conclusion Some of the causal forces explaining the variations in, and relationships among, palliative care patients' symptoms changed over the final month of life. This illustrates how investigating the causal foundations of symptom correlation or clustering can provide more detailed understandings that may contribute to improved control of patient comfort, quality of life, and quality of death. PMID:18533033
Stewart, Bruce; Allan, Simon; Keane, Barry; Marshall, Bridget; Ayling, Jane; Luxford, Tai
The health reforms of the 1990s and early 21st century have seen unheralded change in the delivery of health services in New Zealand, and the concept of integration of primary and specialist or secondary services into a seamless health delivery service is one of the key planks of national and regional healthcare planning in New Zealand. This paper reports on a successful primary secondary integration project. Starting with commentary on the historical difficulties that acted as a catalyst to this initiative, it reports on the development process, how the model works in practice, and outlines some initial evaluation work done as part of its quality improvement component. Given the collaborative nature of this project and its scope across primary and specialist care sectors, the authors believe this model has implications and relevance across a wide spectrum of the New Zealand health service. PMID:16998577
van Raak, Arno; Paulus, Aggie; Cuijpers, Rianne; Te Velde, Clary
Cooperation in networks of providers of palliative care in Europe is problematic. Based on the concept of routines (patterns of behavior) and data about a Dutch network, we developed an explanation of this problem, in order to better understand the conditions for cooperation. Although more research is needed, the study suggests that disparate matches (divergence) between routines of the network members hampers cooperation. To promote cooperation, divergence, and legislation that stabilizes existing routines, must be identified. Divergence must be overcome and negotiations and transformational leadership, which require power sources, may be useful for this. PMID:18261949
A music therapy research study aimed at understanding patients', visitors' and staff members' experiences of a music therapy program in a cancer hospital over a three-month period is described. Respondents' answers to brief open-ended questions, as well as the music therapist researcher's interpretations of the program's relevance, were examined using thematic analysis based on grounded theory. ATLAS.ti software supported data management and analysis. Themes encapsulating 128 patients' reflections about music therapy were delineated and substantiate how music therapy can support palliative care aims throughout the cancer illness trajectory. PMID:11816755
Preston, Nancy; Evans, Catherine J.; Grande, Gunn; Short, Vicky; Benalia, Hamid; Higginson, Irene J.; Todd, on behalf of MORECare, Chris
Abstract Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications. PMID:24195755
Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation. PMID:24447672
Bhadra, Kallol; Manir, Kazi S.; Adhikary, Arnab; Kumar, Gaurav; Manna, Amitabha; Sarkar, Shyamal K.
Objective: To enquire about the level of awareness regarding various important aspects of palliative medicine among doctors of various departments in four Medical Colleges in Kolkata through a questionnaire. Materials and Methods: A questionnaire was developed by few members of Indian Association of Palliative Care. It was distributed, to a convenience sample of doctors who worked at various departments in all four teaching hospitals in Kolkata. The distribution and collection of questionnaires was carried out within four months. Results: The results suggested that 85% of the doctors felt that cancer was the commonest reason for the palliative care teams to be involved. Seventy four percent of the doctors mentioned that pain control was their prime job; 53% said that they are enjoying their encounter with palliative care, so far; 77% of the doctors thought breaking bad news is necessary in further decision making process; only 22% of the doctors reported the WHO ladder of pain control sequentially, 35% of the doctors believed other forms of therapies are useful in relieving pain, 35% of the doctors thought that they gave enough importance and time for pain control; 77% said that they had heard about a hospice, among them still 61% of the doctors thought that the patients should spend last days of their life at home. Thinking of the future, 92% of the doctors think that more and more people will need palliative care in the coming days. Conclusion: Amongst the doctors of various departments, there is a lack of training and awareness in palliative care. Almost all the doctors are interested and they are willing to have more training in pain control, breaking bad news, communication skills and terminal care. PMID:25861665
Spilsbury, Katrina; Arendts, Glenn; McNamara, Bev; Semmens, James
Objective: To describe patterns in the use of hospital emergency departments in the last year of life by people who died with dementia and whether this was modified by use of community-based palliative care. Design: Retrospective population-based cohort study of people in their last year of life. Time-to-event analyses were performed using cumulative hazard functions and flexible parametric proportional hazards regression models. Setting/participants: All people living in Western Australia who died with dementia in the 2-year period 1 January 2009 to 31 December 2010 (dementia cohort; N?=?5261). A comparative cohort of decedents without dementia who died from other conditions amenable to palliative care (N?=?2685). Results: More than 70% of both the dementia and comparative cohorts attended hospital emergency departments in the last year of life. Only 6% of the dementia cohort used community-based palliative care compared to 26% of the comparative cohort. Decedents with dementia who were not receiving community-based palliative care attended hospital emergency departments more frequently than people receiving community-based palliative care. The magnitude of the increased rate of emergency department visits varied over the last year of life from 1.4 (95% confidence interval: 1.1–1.9) times more often in the first 3?months of follow-up to 6.7 (95% confidence interval: 4.7–9.6) times more frequently in the weeks immediately preceding death. Conclusions: Community-based palliative care of people who die with or of dementia is relatively infrequent but associated with significant reductions in hospital emergency department use in the last year of life. PMID:25783598
Schulz, Christian; Wenzel-Meyburg, Ursula; Karger, André; Scherg, Alexandra; in der Schmitten, Jürgen; Trapp, Thorsten; Paling, Andreas; Bakus, Simone; Schatte, Gesa; Rudolf, Eva; Decking, Ulrich; Ritz-Timme, Stephanie; Grünewald, Matthias; Schmitz, Andrea
Background: By means of the revision of the Medical Licensure Act for Physicians (ÄAppO) in 2009, undergraduate palliative care education (UPCE) was incorporated as a mandatory cross sectional examination subject (QB13) in medical education in Germany. Its implementation still constitutes a major challenge for German medical faculties. There is a discrepancy between limited university resources and limited patient availabilities and high numbers of medical students. Apart from teaching theoretical knowledge and skills, palliative care education is faced with the particular challenge of imparting a professional and adequate attitude towards incurably ill and dying patients and their relatives. Project description: Against this background, an evidence-based longitudinal UPCE curriculum was systematically developed following Kern’s Cycle  and partly implemented and evaluated by the students participating in the pilot project. Innovative teaching methods (virtual standardised/simulated patient contacts, e-learning courses, interdisciplinary and interprofessional collaborative teaching, and group sessions for reflective self-development) aim at teaching palliative care-related core competencies within the clinical context and on an interdisciplinary and interprofessional basis. Results: After almost five years of development and evaluation, the UPCE curriculum comprises 60 teaching units and is being fully implemented and taught for the first time in the winter semester 2014/15. The previous pilot phases were successfully concluded. To date, the pilot phases (n=26), the subproject “E-learning in palliative care” (n=518) and the blended-learning elective course “Communication with dying patients” (n=12) have been successfully evaluated. Conclusion: All conducted development steps and all developed programmes are available for other palliative care educators (Open Access). The integrated teaching formats and methods (video, e-learning module, interprofessional education, group sessions for reflexive self-development) and their evaluations are intended to make a contribution to an evidence-based development of palliative care curricula in Germany. PMID:25699109
Fergus, Cameron J Y; Nicol, Jacqueline S; Russell, Papiya B
Many tools exist to assess the symptoms and needs of palliative care patients, but no tool has been validated to prioritise patients referred for specialist inpatient palliative care. The aim of this study was to produce and validate such a tool. A prospective pilot study produced a Support Team Assessment Schedule- (STAS-) based tool--the Admission Assessment Tool (AAT)--and compared this with the existing system of triage at the Marie Curie Hospice, Edinburgh. Validity of the tool was not confirmed and the tool was modified and re-evaluated. One hundred and twenty-seven consecutive patients referred to the hospice received three AAT scores: from the bed manager; the admitting doctor; and the admitting nurse. The hospice's multidisciplinary team assessed the urgency of each patient's admission. The overall correct classification rate was approximately two thirds, but false positive rates were high and there was poor inter-rate correlation. It is concluded the AAT has not been validated. PMID:18414329
Chung, Vincent CH; Wu, Xinyin; Hui, Edwin P.; Ziea, Eric TC; Ng, Bacon FL; Ho, Robin ST; Tsoi, Kelvin KF; Wong, Samuel YS; Wu, Justin CY
Chinese herbal medicines (CHM) are often used in managing cancer related symptoms but their effectiveness and safety is controversial. We conducted this overview of meta-analyses to summarize evidence on CHM for cancer palliative care. We included systematic reviews (SRs) with meta-analyses of CHM clinical trials on patients diagnosed with any type of cancer. Methodological quality of included meta-analyses was assessed with the Methodological Quality of Systematic Reviews (AMSTAR) Instrument. Fifty-one SRs with meta-analyses were included. They covered patients with lung (20?SRs), gastric (8?SRs), colorectal (6?SRs), liver (6?SRs), breast (2?SRs), cervical (1?SR), esophageal (1?SR), and nasopharyngeal (1?SR) cancers. Six SRs summarized evidence on various types of cancer. Methodological quality of included meta-analyses was not satisfactory. Overall, favorable therapeutic effects in improving quality of life among cancer patients have been reported. Conflicting evidence exists for the effectiveness of CHM in prolonging survival and in reducing chemotherapy and/or radiotherapy related toxicities. No serious adverse effects were reported in all included studies. Evidence indicated that CHM could be considered as an option for improving quality of life among patients receiving palliative care. It is unclear if CHM may increase survival, or reduce therapy related toxicities. PMID:26669761
Chung, Vincent Ch; Wu, Xinyin; Hui, Edwin P; Ziea, Eric Tc; Ng, Bacon Fl; Ho, Robin St; Tsoi, Kelvin Kf; Wong, Samuel Ys; Wu, Justin Cy
Chinese herbal medicines (CHM) are often used in managing cancer related symptoms but their effectiveness and safety is controversial. We conducted this overview of meta-analyses to summarize evidence on CHM for cancer palliative care. We included systematic reviews (SRs) with meta-analyses of CHM clinical trials on patients diagnosed with any type of cancer. Methodological quality of included meta-analyses was assessed with the Methodological Quality of Systematic Reviews (AMSTAR) Instrument. Fifty-one SRs with meta-analyses were included. They covered patients with lung (20?SRs), gastric (8?SRs), colorectal (6?SRs), liver (6?SRs), breast (2?SRs), cervical (1?SR), esophageal (1?SR), and nasopharyngeal (1?SR) cancers. Six SRs summarized evidence on various types of cancer. Methodological quality of included meta-analyses was not satisfactory. Overall, favorable therapeutic effects in improving quality of life among cancer patients have been reported. Conflicting evidence exists for the effectiveness of CHM in prolonging survival and in reducing chemotherapy and/or radiotherapy related toxicities. No serious adverse effects were reported in all included studies. Evidence indicated that CHM could be considered as an option for improving quality of life among patients receiving palliative care. It is unclear if CHM may increase survival, or reduce therapy related toxicities. PMID:26669761
Shimizu, Makiko; Kozono, Marie; Murayama, Norie; Yamazaki, Hiroshi
Trimethylaminuria is caused by excessive malodorous trimethylamine excreted via urine and body secretion by decreased hepatic flavin-containing monooxygenase 3 (FMO3) metabolic capacity for transforming non-odorous trimethylamine N-oxide. This study investigates foodstuff first in healthy volunteers for palliative care for self-reported Japanese trimethylaminuria subjects. Urinary excretion of total trimethylamine in volunteers was determined by gas chromatography under daily food intake or after ingestion of selected fish premeasured for total trimethylamine content. Frequency of individuals showing apparently <40% FMO3 metabolic capacity was 3.8% in 365 Japanese volunteers who suffered from self-reported malodor. Bonitos, especially red flesh, had the lowest total trimethylamine content (approximately 1 micromol per g tissue) among salmon, tuna, swordfish, sea bream or cod in this study. Mean excretion ratio of total trimethylamine in 8 h-urines from six healthy volunteers was approximately 90% after loading test by ingesting bonito (200 g) resulting in less than 2 micromol of free trimethylamine/mmol creatinine excreted in volunteers harboring high FMO3 metabolic capacity, in contrast to approximately 40% after ingestion of 200 g cod. These results in healthy volunteers suggest that bonito may be one of the best nutrient sources and palliative care for self-reported Japanese trimethylaminuria subjects. PMID:20045990
Barrett, Neil; Weber-Jahnke, Jens H; Thai, Vincent
Despite a trend to formalize and codify medical information, natural language communications still play a prominent role in health care workflows, in particular when it comes to hand-overs between providers. Natural language processing (NLP) attempts to bridge the gap between informal, natural language information and coded, machine-interpretable data. This paper reports on a study that applies an advanced NLP method for the extraction of sentinel events in palliative care consult letters. Sentinel events are of interest to predict survival and trajectory for patients with acute palliative conditions. Our NLP method combines several novel characteristics, e.g., the consideration of topological knowledge structures sourced from an ontological terminology system (SNOMED CT). The method has been applied to the extraction of different types of sentinel events, including simple facts, temporal conditions, quantities, and degrees. A random selection of 215 anonymized consult letters was used for the study. The results of the NLP extraction were evaluated by comparison with coded sentinel event data captured independently by clinicians. The average accuracy of the automated extraction was 73.6%. PMID:23920625
Rasmussen, Lisa Ann; Grégoire, Marie-Claude
Neurological symptoms are very common in children with life-limiting conditions and are challenging in terms of burden of illness. Moreover, neurological symptoms can significantly impact the child’s quality of life and contribute to distress among parents, families, caregivers and health care providers. Knowing how to manage and alleviated these symptoms is essential for providing good palliative care. In the present article, the more common neurological symptoms of agitation/irritability, spasticity and dystonia will be reviewed. The aim of the present brief review is to provide a basic approach to both the identification and treatment of these neurological symptoms. A medication table is provided for quick reference. A brief commentary and guidance for the management of pain are also incorporated, with reference to further literature sources. PMID:25914579
Wenk, Roberto; De Lima, Liliana
Abstract Background: A World Health Assembly (WHA) resolution adopted in 2014 strongly encourages member states to integrate palliative care (PC) in undergraduate training for health professionals. Objective: The study objective was to describe a consensus-based process workshop to develop PC competences for medical and nursing schools in Colombia and to present a summary of the findings. Methods: The workshop included 36 participants representing 16 medical and 6 nursing schools from 18 universities in Colombia. Participants were distributed in four thematic groups. Using the International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices (LEP) as guidance, they were asked to discuss and define PC competencies at the undergraduate level. Participants provided feedback and approved each recommendation, and then were asked to complete an evaluation. Results: The resulting competences were separated into six categories: (1) Definition and Principles of PC, (2) Identification and Control of Symptoms, (3) End-of-Life Care, (4) Ethical and Legal Issues, (5) Psychosocial and Spiritual Issues, and (6) Teamwork. A comparative analysis revealed that treatment of several symptoms in the IAHPC LEP (pain, dyspnea, constipation, nausea, vomit, diarrhea, delirium, and insomnia) were included in the competencies. All of the IAHPC LEP related to psychological/emotional/spiritual care was included. The evaluation rate of return was 80%. The assessment was very positive: total score of 4.7/5.0; SD?=?0.426), with 89% considering the workshop to be helpful. Conclusion: The workshop provided an opportunity for individuals from different disciplines to discuss competencies and achieve consensus. The resulting competencies will be helpful in the development of PC curricula for physicians and nurses throughout schools in Colombia and other countries. PMID:26485612
Pereira, José L.; Davis, Daniel H.J.; Currow, David C.; Meagher, David; Rabheru, Kiran; Wright, David; Bruera, Eduardo; Hartwick, Michael; Gagnon, Pierre R.; Gagnon, Bruno; Breitbart, William; Regnier, Laura; Lawlor, Peter G.
Context Delirium is a highly prevalent complication in patients in palliative care settings, especially in the end-of-life context. Objectives To review the current evidence base for treating episodes of delirium in palliative care settings and propose a framework for future development. Methods We combined multidisciplinary input from delirium researchers and other purposely selected stakeholders at an international delirium study planning meeting. This was supplemented by a literature search of multiple databases and relevant reference lists to identify studies regarding therapeutic interventions for delirium. Results The context of delirium management in palliative care is highly variable. The standard management of a delirium episode includes the investigation of precipitating and aggravating factors followed by symptomatic treatment with drug therapy. However, the intensity of this management depends on illness trajectory and goals of care in addition to the local availability of both investigative modalities and therapeutic interventions. Pharmacologically, haloperidol remains the practice standard by consensus for symptomatic control. Dosing schedules are derived from expert opinion and various clinical practice guidelines as evidence-based data from palliative care settings are limited. The commonly used pharmacologic interventions for delirium in this population warrant evaluation in clinical trials to examine dosing and titration regimens, different routes of administration, and safety and efficacy compared with placebo. Conclusion Delirium treatment is multidimensional and includes the identification of precipitating and aggravating factors. For symptomatic management, haloperidol remains the practice standard. Further high-quality collaborative research investigating the appropriate treatment of this complex syndrome is needed. PMID:24480529
Bhatnagar, Sushma; Gupta, Mayank
A 'need-supply' and 'requirement-distribution mismatch' along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and 'public-private partnerships' are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework. PMID:25709197
Bhatnagar, Sushma; Gupta, Mayank
A ‘need-supply’ and ‘requirement-distribution mismatch’ along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and ‘public-private partnerships’ are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework. PMID:25709197
Chukwuneke, F N
The Hippocratic Oath has often been referred to as the ethical foundation of medical practice with the key restriction "cause no harm" which is also the principle of benevolence in bioethics. In medical profession, the Oath still exemplifies the key virtues of a doctor in its emphasis on the obligations toward the well-being of the individual patient. In management of end-stage cancer in a depressed economy such as Nigeria, we frequently encounter a wide range of ethical issues that arise in the provision of palliative care mostly due to the prevailing economic situation and cultural setting. Since most of these patients came from a lower economic class of the society, with little or no formal education and lived at a subsistence level, they often find it difficult to provide the medications needed. In a poor setting where health inequity is rife, and ignorance and poverty are commonplace, a good understanding of medical ethics with a good model of health care system will contribute to the health professional's decision-making that will be in the best interest of the patients. Physicians must protect the lives of their patients and should never hasten their death. In end-stage cancer management, we have to relieve suffering and pains, promote palliative care, and give psychological support but never abandoning the patient or initiate terminating their life. This presentation is a clinical analysis of the ethical issues regarding the management of end-stage cancer patients in a poor economy with a critical overview of end-of-life issues in African perspective. PMID:26620617
Gómez-Batiste, Xavier; Martínez-Muñoz, Marisa; Blay, Carles; Amblàs, Jordi; Vila, Laura; Costa, Xavier; Villanueva, Alicia; Espaulella, Joan; Espinosa, Jose; Figuerola, Montserrat; Constante, Carles
Palliative care (PC) has focused on patients with cancer within specialist services. However, around 75% of the population in middle-income and high-income countries die of one or more chronic advanced diseases. Early identification of such patients in need of PC becomes crucial. In this feature article we describe the initial steps of the NECPAL (Necesidades Paliativas [Palliative Needs]) Programme. The focus is on development of the NECPAL tool to identify patients in need of PC; preliminary results of the NECPAL prevalence study, which assessed prevalence of advanced chronically ill patients within the population and all socio-health settings of Osona; and initial implementation of the NECPAL Programme in the region. As first measures of the Programme, we present the NECPAL tool. The main differences from the British reference tools on which NECPAL is based are highlighted. The preliminary results of the prevalence study show that 1.45% of the total population and 7.71% of the population aged over 65 are 'surprise question' positive, while 1.33% and 7.00%, respectively, are NECPAL positive, and surprise question positive with at least one additional positive parameter. More than 50% suffer from geriatric pluri-pathology conditions or dementia. The pilot phase of the Programme consists of developing sectorised policies to improve PC in three districts of Catalonia. The first steps to design and implement a Programme to improve PC for patients with chronic conditions with a public health and population-based approach are to identify these patients and to assess their prevalence in the healthcare system. PMID:24644748
Background To provide quality care at the end of life or for chronically sick patients, nurses must have good knowledge, attitude and practice about palliative care (PC). In Ethiopia PC is new and very little is known about the type of services offered and the readiness of nurses to provide PC. Methods A cross sectional quantitative study design was carried out using 341 nurses working in selected hospitals in Addis Ababa from January 2012 to May 2012. Systematic random sampling was the method employed to select two governmental and two non-governmental hospitals. The researchers used triangulation in their study method making use of: Frommelt’s Attitude Toward Care of the Dying (FATCOD) Scale, Palliative Care Quiz for Nursing (PCQN) and practice questions. This led to enhanced validity of the data. EPI-INFO and SPSS software statistical packages were applied for data entry and analysis. Result Of the total 365 nurses selected, a response rate of 341 (94.2%) were registered. Out of the total study participants, 104 (30.5%) had good knowledge and 259 (76%) had favorable attitude towards PC. Medical and surgical wards as well as training on PC were positively associated with knowledge of nurses. Institution, individuals’ level of education, working in medical ward and the training they took part on PC were also significantly associated with the attitude the nurses had. Nurses working in Hayat Hospital (nongovernmental) had a 71.5% chance of having unfavorable attitude towards PC than those working in Black Lion Hospital (governmental). Regarding their knowledge aspect of practice, the majority of the respondents 260 (76.2%) had poor implementation, and nearly half of the respondents had reported that the diagnosis of patients was usually performed at the terminal stage. In line with this, spiritual and medical conditions were highly taken into consideration while dealing with terminally ill patients. Conclusion The nurses had poor knowledge and knowledge aspect of practice, but their attitude towards PC was favorable. Recommendations are that due attention should be given towards PC by the national health policy and needs to be incorporated in the national curriculum of nurse education. PMID:24593779
Huynh, Jasmine-Yan; Winefield, Anthony H; Xanthopoulou, Despoina; Metzer, Jacques C
This study examined the role of burnout and connectedness in the job demands-resources (JD-R) model among palliative care volunteers. It was hypothesized that (a) exhaustion mediates the relationship between demands and depression, and between demands and retention; (b) cynicism mediates the relationship between resources and retention; and (c) connectedness mediates the relationship between resources and retention. Hypotheses were tested in 2 separate analyses: structural equation modeling (SEM) and path analyses. The first was based on volunteer self-reports (N = 204), while the second analysis concerned matched data from volunteers and their family members (N = 99). While strong support was found for cynicism and connectedness as mediators in both types of analyses, this was not altogether the case for exhaustion. Implications of these findings for the JD-R model and volunteer organizations are discussed. PMID:22207713
Widmer, Geraldine; And Others
Findings from a study of home care services in one New York district document the value and relatively modest costs of home health care for the chronically ill and dependent elderly. Professional nurses coordinated the care, but most of the direct services were provided by home health aides and housekeepers. (MF)
San Francisco Foundation, CA.
This handbook for child care centers that are expanding their support to parents of children in their programs begins by describing the Parent Services Project (PSP). The next section explains the many services available to parents and the variety of ways these services are provided at the PSP centers. Services include fun family events; parenting…
Batzlaff, Cassandra M.; Karpman, Craig; Afessa, Bekele; Benzo, Roberto P.
The objective of this study was to develop a model to aid clinicians in better predicting 1-year mortality rate for patients with an acute exacerbation of chronic obstructive pulmonary disease admitted to the medical intensive care unit (ICU) with the goal of earlier initiation of palliative care and end-of-life communications in this patient population. This retrospective cohort study included patients from a medical ICU from April 1, 1995, to November 30, 2009. Data collected from the Acute Physiology and Chronic Health Evaluation III database included demographic characteristics; severity of illness scores; noninvasive and invasive mechanical ventilation time; ICU and hospital length of stay; and ICU, hospital, and 1-year mortality. Statistically significant univariate variables for 1-year mortality were entered into a multivariate model, and the independent variables were used to generate a scoring system to predict 1-year mortality rate. At 1-year follow-up, 295 of 591 patients died (50%). Age and hospital length of stay were identified as independent determinants of mortality at 1 year by using multivariate analysis, and the predictive model developed had an area under the operating curve of 0.68. Bootstrap analysis with 1000 iterations validated the model, age, and hospital length of stay, entered the model 100% of the time (area under the operating curve=0.687; 95% CI, 0.686–0.688). A simple model using age and hospital length of stay may be informative for providers willing to identify patients with chronic obstructive pulmonary disease with high 1-year mortality rate who may benefit from end-of-life communications and from palliative care. PMID:24656805
Background Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. Methods A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. Results 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. Conclusions Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research. PMID:21477274
The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals
Murtagh, Fliss EM
Background: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients. Aim: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence. Design: Standard systematic review and narrative synthesis. Data sources: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies. Results: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care. Conclusions: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed. PMID:24821710
Devi, B. C. R.; Corbex, M.
Background: The provision of palliative care (PC) and opioids is difficult to ensure in remote areas in low- and middle-income countries. We describe here the set up of a home-care program in Sarawak (the Malaysian part of the Borneo Island), where half the population lives in villages that are difficult to access. Methods: The establishment of this program, initiated in 1994 by the Department of Radiotherapy of Sarawak General Hospital, consisted of training, empowering nurses, simplifying referral, facilitating access to medication, and increasing awareness among public and health professionals about PC. Results: The program has been sustainable and cost efficient, serving 936 patients in 2006. The total morphine usage in the program increased from <200 g in 1993 to >1400 g in 2006. The results show that pain medication can be provided even in remote areas with effective organization and empowerment of nurses, who were the most important determinants for the set up of this program. Education of family was also a key aspect. Conclusion: The authors believe that the experience gained in Sarawak may help other regions with low or middle resources in the set up of their PC program especially for their remote rural population. PMID:18641007
: A recent article in the BMJ highlighted the role of social media has in changing the way we talk about and respond to death and dying. There are so many social media channels do you know which ones are best for communicating about your work? for networking with peers? participating in journal clubs? disseminating research with the international community? What about your local community- how do you increase engagement online to promote your work and events? How can you use social media to source and access interesting content and information about the public health approach? This workshop is designed as a beginner level and new user workshop and is suitable for anyone wanting to be more active in social media. It is designed specifically to focus on social media in relation to the end of life, palliative care and death care online communities. Bring your social media device - your phone, ipad or computer and we will do the following: login and practice communicating with other users develop and implement basic social media goals apply strategies to increase your engagement and effectiveness on social media learn simple ways to measure your reach. Workshop participants will have an opportunity to build confidence and be more effective communicators in social media. You then get to practice your newly learned skills for the remainder of the PHPC Conference. PMID:25960469
McNeal, Gloria J
The purpose of this investigation, using case study methodology, was to explore the end of life issues and to give meaning to the biopsychosocial experiences of the study participant, an adult African American female patient diagnosed with Cystic Fibrosis. Two theoretical frameworks were used to guide the investigation of the study: Kubler-Ross Model of the Stages of Dying and the Conceptual Framework for Palliative Care Practice. Data analysis included review of medical records and patient journals, interviews, observations and clinical assessment. The findings indicated that end of life issues can be articulated within the context of a palliative care framework and that the biopsychosocial experiences of the dying person acquire meaning when situated within life history, ethical values and metaphysical belief systems. PMID:12674889
Chasen, M.R.; Feldstain, A.; Gravelle, D.; MacDonald, N.; Pereira, J.
Background After treatment, patients with active cancer face a considerable burden from the effects of both the disease and its treatment. The Palliative Rehabilitation Program (prp) is designed to ameliorate disease effects and to improve the patient’s functioning. The present study evaluated predictors of program completion and changes in functioning, symptoms, and well-being after the program. Methods The program received referrals for 173 patients who had finished anticancer therapy. Of those 173 patients, 116 with advanced cancer were eligible and enrolled in the 8-week interprofessional prp; 67 completed it. Measures of physical, nutritional, social, and psychological functioning were evaluated at entry to the program and at completion. Results Participants experienced significant improvements in physical performance (p < 0.000), nutrition (p = 0.001), symptom severity (p = 0.005 to 0.001), symptom interference with functioning (p = 0.003 to 0.001), fatigue (p = 0.001), and physical endurance, mobility, and balance or function (p = 0.001 to 0.001). Reasons that participants did not complete the prp were disease progression, geographic inaccessibility, being too well (program not challenging enough), death, and personal or unknown reasons. A normal level of C-reactive protein (<10 mg/L, p = 0.029) was a predictor of program completion. Conclusions Patients living with advanced cancers who underwent the interprofessional prp experienced significant improvement in functioning across several domains. Program completion can be predicted by a normal level of C-reactive protein. PMID:24311945
Gamblin, Vincent; Da Silva, Arlette; Villet, Stéphanie; El Hajbi, Farid
Malignant ascites, occurring in advanced stages of cancer, is linked with poor prognosis and can cause invalidating symptoms. Physiopathological mechanisms of ascites formation are complex and have yet to be fully elucidated. In most cases, ascites is due to peritoneal carcinomatosis in which vascular permeability is enhanced by VEGF production while lymphatic drainage decreases. Ascites can also be secondary to portal hypertension, for example in case of multiple liver metastases, or due to lymphatic obstruction. While paracentesis and diuretics are commonly used, their efficiency has never been compared in a randomized controlled study. Paracentesis brings immediate but temporary relief in over 90% of cases, and implies multiple hospitalizations. Literature reports ascites control by aldosterone alone or in association with furosemide. But, available data is controversial, and there is no predictive factor to identify patients that respond to diuretic treatment. The indication of diuretic treatment is left to the appreciation of physicians. Existing recommendations are old, and practices influenced by results obtained in non-neoplastic ascites. Additional evidences are required before guidelines can be established for the palliative management of malignant ascites. PMID:26477275
Götze, Heide; Brähler, Elmar; Gansera, Lutz; Schnabel, Astrid; Köhler, Norbert
Family caregivers of terminal ill cancer patients receiving home based palliative care were interviewed at 2 measurement points. Symptoms of exhaustion and overload (Copenhagen Burnout Inventory, CBI) and caregiver burden (German version of the "Burden Scale for Family Caregivers", BSFC-10) were assessed. The physical and emotional exhaustion of the family caregivers increased over the time of care, regardless of age, gender, education and religion. Caring partners as well as caregivers with financial burden due to the care situation were more exhausted and overloaded than other caregivers. The construct "exhaustion and overload" was closely associated with psychological distress, quality of life and sense of coherence. Offering psychological support for family caregivers should be an integral part of outpatient palliative care. Furthermore it is important to discuss the financial situation of family caregivers at the beginning of home care and refer them to appropriate support services if needed. PMID:25405873
Nthumba, Peter M.
Introduction. Palliative care in Kenya and the larger Sub-Saharan Africa is considered a preserve of hospices, where these exist. Surgical training does not arm the surgeon with the skills needed to deal with the care of palliative patients. Resource constraints demand that the surgeon be multidiscipline trained so as to be able to adequately address the needs of a growing population of patients that could benefit from surgical palliation. Patients and Methods. The author describes his experience in the management of a series of 31 palliative care patients, aged 8 to 82 years. There were a total of nine known or presumed mortalities in the first year following surgery; 17 patients experienced an improved quality of life for at least 6 months after surgery. Fourteen of these were disease-free at 6 months. Conclusion. Palliative reconstructive surgery is indicated in a select number of patients. Although cure is not the primary intent of palliative surgery, the potential benefits of an improved quality of life and the possibility of cure should encourage a more proactive role for the surgeon. The need for palliative care can be expected to increase significantly in Africa, with the estimated fourfold increase of cancer patients over the next 50 years. PMID:25530878
Aoun, Samar M.; Grande, Gunn; Howting, Denise; Deas, Kathleen; Toye, Chris; Troeung, Lakkhina; Stajduhar, Kelli; Ewing, Gail
Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain. PMID:25849348
Mangili, G; Aletti, G; Frigerio, L; Franchi, M; Panacci, N; Viganò, R; DE Marzi, P; Zanetto, F; Ferrari, A
Bowel obstruction is the most common complication in patients with ovarian cancer. Management of this situation is controversial. The aim of our retrospective study was to determine the best approach for managing bowel obstruction in recurrent ovarian cancer. A retrospective analysis of data on 47 patients with intestinal obstruction by ovarian cancer was performed. Twenty-seven patients were submitted to surgery, with 21 intestinal procedures performed, 2 gastrostomy tubes placed, and 4 patients deemed inoperable. Twenty patients were managed medically with Octreotide (mean dosage of 0.48 mg/day), of which 1 patient required a nasogastric tube. Age, performance status, diagnosis of tumor to occlusion time, obstruction site, previous chemotherapy or radiotherapy, presence of ascites, or palpable masses were the variables analyzed. Student's t-test and Pearson chi-square test were used to compare the two different groups of treatment (surgical vs medical therapy). Disease-free-survival curves were plotted according to the Kaplan-Meier method and analyzed by the log-rank test. Cox's proportional hazards model was used for multivariate analysis. Values less than or equal to 0.05 were considered significant. The mean age of the patients was 58.7 years. Perioperative mortality and morbidity were both 22%. All patients died with minimal distress. Performance status results were significantly different between the patients submitted to surgery and patients treated with Octreotide (P= 0.03). No significant differences were found in the other variables analyzed. In multivariate analysis, only type of treatment emerges as a strong predictor of poor outcome (P < 0.001). Both surgery and Octreotide therapy are able to control distressing symptoms in end-stage ovarian cancer. Survival was significantly longer in the surgical group, and surgical palliation should be considered first in patients with good performance status. PMID:16174232
... hospice or other health care setting. 10 If morphine is prescribed, will it be dangerous? If you ... team may recommend trying stronger medicines such as morphine. Simply stated, morphine is an opiate – a strong ...
Gordon, Theresa A.
This study is predominantly a quantitative investigation into the model of care received by deceased loved ones and its impact on the grief reactions of their caregiver. Grief is conceptualized to include both positive reactions, as finding comfort...
In an ideal world, all of us - patients, parents, family members, nurses, physicians, social workers, therapists, pastoral care workers, and others - would always work together in a collaborative manner to provide the best care possible. This article bases the framework for this ideal upon studies of communication between patients, families, and clinicians, as well as more general works on communication, collaboration, decision-making, mediation, and ethics, and is comprised of four parts: what is meant by collaborative communication; key concepts that influence how we frame the situations that children with life-threatening conditions confront and how these frameworks shape the care we provide; general topics that are important to the task of collaborative communication, specifically how we use heuristics when we set about to solve complicated problems; and three common tasks of collaborative communication, offering practical advice for patient care. PMID:17933613
Trial of Individual Psychosocial Interventions for Cancer Patients enhanced usual care (EUC), standard Individual Supportive Psychotherapy (ISP), Individual Meaning-Centered Psychotherapy (IMCP) NCT01323309 Memorial Sloan Kettering Cancer Center.
Mallory, Judy L.
A 6-week experiential course based on a model of death education and transformative learning prepared nursing students to care for dying patients. Pretest/posttest scores for 45 who received the intervention and 59 controls showed the intervention contributed to a significant positive increase in attitudes toward care of the dying. (Contains 27…
Guirimand, Frédéric; Sahut d'izarn, Marine; Laporte, Lucy; Francillard, Marie; Richard, Jean-François; Aegerter, Philippe
Dyspnea is a symptom that severely affects the quality of life of terminally ill patients. Its frequency differs considerably between studies. We aimed to characterize the frequency of dyspnea in a palliative care hospital (PCH) and to identify factors predisposing to dyspnea, particularly during the very last days of life, as a function of the underlying disease. Episodes of dyspnea were identified by the computerized extraction of prospectively collected data from the reports of care assistants or from medical observations recorded in the medical files for all stays at our PCH during the last 6 years. There were 6455 hospital stays, 88% ending in the death of the patient; 13,282 episodes of dyspnea were recorded during 2608 hospital stays (40%). Dyspnea was more frequently observed in cases of cancer than in other conditions (RR = 1.30; 95% CI: 1.14-1.48). Pulmonary metastasis increased the risk of dyspnea from 37% to 51% (RR = 1.37; 95% CI: 1.29-1.46). Dyspnea frequency varied with the primary cancer site, from 24% (brain cancer) to 60% (esophageal cancer). The data for cancer patients staying for more than 6 days who subsequently died indicated that 8% of patients experienced dyspnea exclusively during the last 4 days of the life, independently of the site of the primary cancer. Dyspnea during the last few days of life requires systematic assessment. Exclusively terminal dyspnea should be distinguished from more precocious dyspnea, as the pathophysiological mechanisms and treatments of these two forms are probably different. PMID:25644607
Guirimand, Frédéric; Sahut d'izarn, Marine; Laporte, Lucy; Francillard, Marie; Richard, Jean-François; Aegerter, Philippe
Dyspnea is a symptom that severely affects the quality of life of terminally ill patients. Its frequency differs considerably between studies. We aimed to characterize the frequency of dyspnea in a palliative care hospital (PCH) and to identify factors predisposing to dyspnea, particularly during the very last days of life, as a function of the underlying disease. Episodes of dyspnea were identified by the computerized extraction of prospectively collected data from the reports of care assistants or from medical observations recorded in the medical files for all stays at our PCH during the last 6 years. There were 6455 hospital stays, 88% ending in the death of the patient; 13,282 episodes of dyspnea were recorded during 2608 hospital stays (40%). Dyspnea was more frequently observed in cases of cancer than in other conditions (RR = 1.30; 95% CI: 1.14–1.48). Pulmonary metastasis increased the risk of dyspnea from 37% to 51% (RR = 1.37; 95% CI: 1.29–1.46). Dyspnea frequency varied with the primary cancer site, from 24% (brain cancer) to 60% (esophageal cancer). The data for cancer patients staying for more than 6 days who subsequently died indicated that 8% of patients experienced dyspnea exclusively during the last 4 days of the life, independently of the site of the primary cancer. Dyspnea during the last few days of life requires systematic assessment. Exclusively terminal dyspnea should be distinguished from more precocious dyspnea, as the pathophysiological mechanisms and treatments of these two forms are probably different. PMID:25644607
...2011-10-01 2011-10-01 false Priority for child care services. 98.44 Section 98...HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Program Operations (Child Care Services)-Lead Agency and...
...2012-10-01 2012-10-01 false Priority for child care services. 98.44 Section 98...HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Program Operations (Child Care Services)-Lead Agency and...
...2010-10-01 2010-10-01 false Priority for child care services. 98.44 Section 98...HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Program Operations (Child Care Services)-Lead Agency and...
...2014-10-01 2014-10-01 false Priority for child care services. 98.44 Section 98...Human Services GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Program Operations (Child Care Services)-Lead Agency and...
...2013-10-01 2013-10-01 false Priority for child care services. 98.44 Section 98...HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Program Operations (Child Care Services)-Lead Agency and...
... 2010-10-01 false Primary care case management services. 440.168 Section 440...Definitions § 440.168 Primary care case management services. (a) Primary care case management services means case management related...
Summary In an ideal world, all of us – patients, parents, family members, nurses, physicians, social workers, therapists, pastoral care workers, and others – would always work together in a collaborative manner to provide the best care possible to the patient: this article is committed to this ideal. The chapter will base the frameworks and suggestions in part upon studies of communication between patients, families, and clinicians, as well as more general works on communication, collaboration, decision-making, mediation, and ethics. This article unfolds in four parts. In Part I, we will explore what we mean by collaborative communication. In Part II, we will examine key concepts that influence how we frame the situations that children with life-threatening conditions confront and how these frameworks shape the care we provide. In Part III, we will consider a few general topics that are quite important to the task of collaborative communication, specifically how we use little “habits of thought”– called heuristics – when we set about to solve complicated problems; how emotion affects the exchange of information between people; and how we can avoid certain pitfalls when engaging in difficult conversations. In Part IV, we will proceed through three common tasks of collaborative communication offering practical advice for patient care. PMID:17933613
Hakim, Mumin; Burrier, Candice; Bhalla, Tarun; Raman, Vidya T; Martin, David P; Dairo, Olamide; Mayerson, Joel L; Tobias, Joseph D
Tumor progression during end-of-life care can lead to significant pain, which at times may be refractory to routine analgesic techniques. Although regional anesthesia is commonly used for postoperative pain care, there is limited experience with its use during home hospice care. We present a 24-year-old male with end-stage metastatic osteosarcoma who required anesthetic care for a right-sided above-the-elbow amputation. The anesthetic management was complicated by the presence of a large mediastinal mass, limited pulmonary reserve, and severe chronic pain with a high preoperative opioid requirement. Intraoperative anesthesia and postoperative pain management were provided by regional anesthesia using an interscalene catheter. He was discharged home with the interscalene catheter in place with a continuous local anesthetic infusion that allowed weaning of his chronic opioid medications and the provision of effective pain control. The perioperative applications of regional anesthesia in palliative and home hospice care are discussed. PMID:26442759
... Chaplains •Counselors •Child life specialists •Nutritionists •Art and music therapists 7 How can our family get palliative ... additional activities like video chats, social media, soothing music, and massage and art therapy that may help ...
Richardson, J; Grose, J
Background: An independent evaluation of changes to the delivery of Palliative Day Services was carried out during 2006-2007 using interviews with service users. The analysis found that the words and metaphors employed by users of services emphasized their emotional response to the changes, and helped to explain their depth of feeling about their experiences, warranting further investigation. Aim: To conduct a secondary analysis on interview data collected for the Day Services Evaluation Study in order to understand how patients and their carers use descriptive words and metaphor when talking about their experiences of palliative day services. Methods: Interview transcripts from 40 patients and 8 carers were subjected to secondary thematic analysis. These were read individually and coded where metaphor or descriptive words had been used to emphasize the effect of the illness and the experiences of the Day Services. Findings: Examples of the metaphorical expressions and words used described the service as a ‘secure rock in a changing world’; transition was felt as ‘sadness’, a ‘betrayal’, with feelings that the changes were ‘bitter and twisted;’ and left ‘a black hole’. Post transition the mood had changed to acceptance ‘When life throws lemons at you, you make lemonade’. Conclusions: The metaphors and descriptive words used act as what we describe as ‘emotional intensifiers’ which provide a measure of the impact of the effect of illness, the effect of the day services on users and carers and the intensity of feeling during the time of transition. PMID:19587796
Department of Surgery Acute Care Surgery Service 200 Hawkins Drive Iowa City, Iowa 52242-1086 319-356-2902 Clinic Scheduling 319-356-7892 Administrative Support 319-356-3392 Fax www.uihealthcare.org/surgery Acute Care Surgery Education Topics Burns: 1. Acute Burn Resuscitation 2. Necrotizing Acute Soft Tissue
Bernacki, Rachelle; Hutchings, Mathilde; Vick, Judith; Smith, Grant; Paladino, Joanna; Lipsitz, Stuart; Gawande, Atul A; Block, Susan D
Introduction Ensuring that patients receive care that is consistent with their goals and values is a critical component of high-quality care. This article describes the protocol for a cluster randomised controlled trial of a multicomponent, structured communication intervention. Methods and analysis Patients with advanced, incurable cancer and life expectancy of <12?months will participate together with their surrogate. Clinicians are enrolled and randomised either to usual care or the intervention. The Serious Illness Care Program is a multicomponent, structured communication intervention designed to identify patients, train clinicians to use a structured guide for advanced care planning discussion with patients, ‘trigger’ clinicians to have conversations, prepare patients and families for the conversation, and document outcomes of the discussion in a structured format in the electronic medical record. Clinician satisfaction with the intervention, confidence and attitudes will be assessed before and after the intervention. Self-report data will be collected from patients and surrogates approximately every 2?months up to 2?years or until the patient's death; patient medical records will be examined at the close of the study. Analyses will examine the impact of the intervention on the patient receipt of goal-concordant care, and peacefulness at the end of life. Secondary outcomes include patient anxiety, depression, quality of life, therapeutic alliance, quality of communication, and quality of dying and death. Key process measures include frequency, timing and quality of documented conversations. Ethics and dissemination This study was approved by the Dana-Farber Cancer Institute Institutional Review Board. Results will be reported in peer-reviewed publications and conference presentations. Trial registration number Protocol identifier NCT01786811; Pre-results. PMID:26443662
Background Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. Methods Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. Results Three dimensions were found to be crucial for understanding and analysing WTD statements: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical ‘meanings’ were identified in the study, including “to let death put an end to severe suffering”, “to move on to another reality”, and – more frequently– “to spare others from the burden of oneself”. Conclusions The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients. PMID:25161387
Street, Annette F; Love, Anthony W; Blackford, Jeanine
This paper compares the attitudes and practices of health professionals to the provision of family-centred bereavement care in different Australian inpatient settings: palliative care services, acute care and long stay residential aged care settings. Semi-structured interviews (88) were conducted with doctors, nurses, pastoral carers and allied health staff. Comprehensive bereavement care was not being provided or resourced in the acute and aged care hospitals to the same level as that provided in palliative care services. Residential care provided continuity of care and good support for grieving relatives and other residents. A structured bereavement program is needed in all inpatient settings with palliative care patients, along with resource and education support for health professionals. PMID:15551675
Storme, Laurent; de Mézerac, Isabelle
Following antenatal diagnosis of a lethal disorder, some parents are so overwhelmed by grief that therapeutic abortion is seen as the least traumatic option. However, the impending death and anticipated mourning create a particularly complex emotional situation. When faced with such dramatic circumstances, some parents seek to restore meaning to their parenthood by accompanying their baby through to the end of its life. Methods derived from hospice care may be appropriate in such situations, considering the unborn child as "a living being among the living ", pregnancy as the first chapter of every life, and death as a natural process. This approach, which may be adopted in maternity wards and neonatal intensive care units, requires the medical team to provide consistent information to the parents and to ensure their close involvement. These new parental demands must be clearly understood if they are to be met as effectively as possible. PMID:21513125
Wilson, Donna M.; Birch, Stephen; Sheps, Sam; Thomas, Roger; Justice, Christopher; MacLeod, Rod
The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs.…
Lewis, Robert Michael
Appendix 14-O 1 Health Care Services for Summer Camps Health Care Coverage Staffing: The athletic coverage of their camp. A proposal for health care service will be develop and the camp director must sign of health care services for a summer camp is a complimentary service and the camp director may choose
With the advance of Web Services technologies and the emergence of Web Services into the information space, tremendous opportunities for empowering users and organizations appear in various application domains including electronic commerce, travel, intelligence information gathering and analysis, health care, digital government, etc. In fact, Web services appear to be s solution for integrating distributed, autonomous and heterogeneous information sources. However, as Web services evolve in a dynamic environment which is the Internet many changes can occur and affect them. A Web service is affected when one or more of its associated information sources is affected by schema changes. Changes can alter the information sources contents but also their schemas which may render Web services partially or totally undefined. In this paper, we propose a solution for integrating information sources into Web services. Then we tackle the Web service synchronization problem by substituting the affected information sources....
...50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining after...
...50 Public Welfare Department of Health and Human Services GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining after...
...50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining after...
...50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining after...
Robbins, Catherine J; Rudsenske, Todd; Vaughan, James S
Sophisticated private equity investors in health services provide venture capital for early-stage companies, growth capital for mid-stage companies, and equity capital for buyouts of mid-stage and mature companies. They pursue opportunities in provider sectors that are large and have a stable reimbursement environment, such as acute care services; sectors with room to execute consolidation strategies, such as labs; alternative-site sectors, such as "storefront" medicine; and clinical services, such as behavioral health, that are subject to profitably increasing quality and lowering costs. The innovations created through private equity investments could challenge established health services organizations. PMID:18780929
... 45 Public Welfare 1 2013-10-01 2013-10-01 false Child care services. 98.50 Section 98.50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining...
... 45 Public Welfare 1 2014-10-01 2014-10-01 false Child care services. 98.50 Section 98.50 Public Welfare Department of Health and Human Services GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining...
... 45 Public Welfare 1 2011-10-01 2011-10-01 false Child care services. 98.50 Section 98.50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining...
... 45 Public Welfare 1 2010-10-01 2010-10-01 false Child care services. 98.50 Section 98.50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining...
... 45 Public Welfare 1 2012-10-01 2012-10-01 false Child care services. 98.50 Section 98.50 Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50 Child care services. (a) Of the funds remaining...
Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John
Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings…
Jette, Alan M.; And Others
Describes a diversified approach to delivering home care to vulnerable older people. This pilot program, funded by the Massachusetts Department of Elder Affairs, attempted to reduce the demand for scarce homemaker services. Results suggest homecare diversification did not alter consumer satisfaction but increased manager time. (Author/JAC)
... 42 Public Health 3 2010-10-01 2010-10-01 false Hospice care services. 417.531 Section 417.531... PREPAYMENT PLANS Medicare Payment: Cost Basis § 417.531 Hospice care services. (a) If a Medicare enrollee of... receive hospice care services, payment for these services is made to the hospice that furnishes...
... 42 Public Health 4 2011-10-01 2011-10-01 false Primary care case management services. 440.168 Section 440.168 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN... care case management services. (a) Primary care case management services means case management...
... 42 Public Health 4 2012-10-01 2012-10-01 false Primary care case management services. 440.168 Section 440.168 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN... care case management services. (a) Primary care case management services means case management...
... 42 Public Health 4 2010-10-01 2010-10-01 false Primary care case management services. 440.168 Section 440.168 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN... care case management services. (a) Primary care case management services means case management...
... 42 Public Health 4 2014-10-01 2014-10-01 false Primary care case management services. 440.168 Section 440.168 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN... care case management services. (a) Primary care case management services means case management...
Levy, J S
The author introduces the concept of service guarantees for application in health care and differentiates between explicit, implicit, and conditional vs. unconditional types of guarantees. An example of an unconditional guarantee of satisfaction is provided by the hospitality industry. Firms conveying an implicit guarantee are those with outstanding reputations for products such as luxury automobiles, or ultimate customer service, like Nordstrom. Federal Express and Domino's Pizza offer explicit guarantees of on-time delivery. Taking this concept into efforts to improve health care delivery involves a number of caveats. Customers invited to use exceptional service cards may use these to record either satisfaction or dissatisfaction. The cards need to provide enough specific information about issues so that "immediate action could be taken to improve processes." Front-line employees should be empowered to respond to complaints in a meaningful way to resolve the problem before the client leaves the premises. PMID:10711165
...officials, the Voluntary Service Report, Veterans Health Administration Update, and remarks by VA officials on suicide prevention, palliative care, medical home and social work service. Educational workshops will be held in the afternoon...
M., Sydney; Harman, Stephanie M.; Braun, Ursula K.; Howie, Lynn J.; Harris, Patricia F.; Jayes, Robert L.
Patients near the end of life often undergo invasive procedures, such as biliary stenting for obstructive jaundice, with the intent of relieving symptoms. We describe a case in which the medical team and a patient and family are considering a second palliative biliary stent despite the patient's limited life expectancy. We review available evidence to inform the decision, focusing on the specific question of whether the benefits of palliative biliary stents in patients with advanced cancer outweigh the risks. We then apply the evidence to the issue of how the primary and/or palliative care team and the interventionist communicate with patients and their families about the risks and benefits of palliative procedures. Review of the evidence found several prospective case series without control groups that measured patient-centered outcomes. Studies had high attrition rates, results for improvements in symptoms and quality of life were mixed, and rates of complications and short-term mortality were high. In conclusion, the limited evidence does not support that the benefits of palliative biliary stents in this population outweigh the risks. We propose that primary care teams consider and discuss the larger picture of the goals of care with patients and families when considering offering these procedures, as well as benefits and potential harms, and consider involving palliative care services early, before consultation with an interventionist. PMID:22464354
Tuffrey-Wijne, Irene; Hogg, James; Curfs, Leopold
Background: As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods: A range of databases and the World Wide Web were searched for relevant…
... 42 Public Health 4 2013-10-01 2013-10-01 false Primary care case management services. 440.168 Section 440.168 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS SERVICES: GENERAL PROVISIONS Definitions § 440.168 Primary care case management services. (a)...
Simms, Mark D.; Freundlich, Madelyn; Battistelli, Ellen S.; Kaufman, Neal D.
Describes the essential features of a health care system that can meet the special needs of children in out-of-home care. Discusses some of the major recent changes brought about by welfare and health care reform. Notes that it remains to be seen whether the quality of services will improve as a result of these reforms. (Author)