... growing practice specialty for highly trained physicians, nurses, social workers, chaplains, and others. Palliative medicine is the medical specialty dedicated to excellence in palliative care. Palliative care specialists typically work in teams and usually are needed when the ...
In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids. PMID:20443298
Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu
This study examined the current level of palliative care services at the Minneapolis Veterans Affairs Medical Center (MVAMC). The findings of the study suggest that current palliative care services do not fully meet the palliative care needs of the existi...
M. M. Mylan
Little is known of the palliative care needs and experiences of older adults. This study explored whether these needs differed from those of younger patients. We performed a retrospective data analysis of 1184 palliative care consultations in a major teaching hospital. There were statistically significant differences across age groups in patient demographic and clinical characteristics, advance care planning, and service
Martin M Evers; Diane E Meier; R. Sean Morrison
Palliative day care has expanded rapidly in the recent years, but the types of care available vary. To understand more about the different models of day care we conducted a questionnaire survey of the 43-day care centres in North and South Thames Regions in England (total population 13.75 million). The questionnaire covered: management, staffing and organizational policies; the numbers, types and reasons for referral; and the services and care provided. Forty (93%) centres responded. Centres had operated for between 1 and 16 years, mean 8 years. A total of 2268 day care places (mean per centre, 57) were available per week--with an estimated 1.77 places per 10,000 population. Twenty centres had never had a waiting list or had to prioritize patients; 30 had a discharge policy. The mean time the longest patient had been attending was 4.5 years, range 1-12 years. There were a total of 3627 new referrals per year or 3.06 per 10,000 population. Of the 2054 patients recorded by day care centres during a week of detailed monitoring, 1850 (90%) had cancer and 204 had other diseases--most commonly HIV or AIDS, motor neurone disease or stroke. Thirty-four centres were managed by nurses, two by social work or social service professionals, and the remainder by people with other backgrounds. Most units had doctors, nurses, chaplains, managers, aromatherapists and hairdressers, but occupational therapists, social workers, chiropodists, dietitians and music and art therapists were much more varied, as was whether these posts were paid. The most common activities were: review of patients' symptoms or needs, monitoring symptoms, bathing, wound care, physiotherapy, hairdressing and aromatherapy. Centres describing themselves as more or mostly social were less likely to undertake daily assessment of new symptoms and wound care (chi-squared 13.0, 10.1, respectively, df 4, P < 0.05). However, we found no significant differences between centres describing themselves as more medical or more social in reported levels of staffing, who was in charge, funding or most activities. The findings suggest that there are core activities offered in palliative day care, but also variations in medical assessments, nurse-led clinics, trips, art and music therapy, and artistic activities. PMID:10974979
Higginson, I J; Hearn, J; Myers, K; Naysmith, A
Objectives This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described. Data Sources Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed. Conclusion Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models. Implications for nursing practice Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer.
Bakitas, Marie; Bishop, Margaret Firer; Caron, Paula; Stephens, Lisa
Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes.
Nelson, Judith E.; Weissman, David E.; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Cortez, Therese B.; Curtis, J. Randall
Jersey Hospice Care, established in 1982, provides a care and support service for the community. The service includes provision of palliative care, focusing on pain assessment and control. Mainly a home-care service, it is supported by a day hospice, lymphoedema service, the provision of complementary therapies, a six-bed in-patient unit and a bereavement service. PMID:12030064
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.
Cinnamon, Jonathan; Schuurman, Nadine; Crooks, Valorie A
This systematic review evaluates the evidence underpinning the provision of palliative day care services (PDS) to determine whether such services have a measurable effect on attendees' wellbeing. The majority of studies reviewed were qualitative and elicited individual perceptions of the benefits PDS. Although it was difficult to determine the quality of many studies, it would appear that attendance at PDS had a positive impact on attendees' quality of life. Fewer studies utilized validated outcome measures to determine the effect of PDS on attendees' wellbeing and small sample sizes combined with high attrition rates influenced the significance of some the results. However little quantitative evidence was offered to prove that PDS had an impact on attendees' quality of life or wellbeing. The review concludes that dying people find attending PDS a valuable experience that allows them to engage with others and to be supported in a restorative environment. However, further well-powered empirical studies are required to provide quality evidence to determine whether or not attendance at PDS does indeed have a positive impact on the wellbeing of attendees. PMID:20929930
Stevens, Elaine; Martin, Colin R; White, Craig A
Background The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers Aim To explore factors that support partnership working between specialist and generalist palliative care providers. Design Systematic review. Method A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Results Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Conclusion Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.
Gardiner, Clare; Gott, Merryn; Ingleton, Christine
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
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila; Candy, Bridget
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.
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila
Objective To understand perceptions of palliative care in acute care hospitals and identify barriers to earlier use of palliative care in the illness trajectory. Methods We conducted semistructured interviews with 120 providers involved in decision making or discharge planning and “shadowed” health care providers on intensive care unit rounds in 11 Pennsylvania hospitals, and then used qualitative methods to analyze field notes and transcripts. Results Most participants characterized palliative care as end-of-life or hospice care that is initiated after the decision to limit treatment is made. Few recognized the role of palliative care in managing symptoms and addressing the psychosocial needs of patients with chronic illnesses other than cancer. Participants viewed earlier and broader palliative care consultations less in terms of clinical benefits than in terms of cost savings accrued from shorter terminal hospitalizations. In general, participants thought nurses were most likely to facilitate palliative care consults, surgeons were most likely to resist them, and intensive care specialists were most likely to view palliative care as within their own scope of practice. Suggestions for increasing and broadening palliative care integration and utilization included providing workforce development, education, and training; improving financial reimbursement and sustainability for palliative care; and fostering a hospital culture that turns to high -intensity care only if it meets the individual needs and goals of patients with chronic illnesses. Conclusions Initiating palliative care consultations earlier during hospitalization will require an emphasis on patient benefits and assurances that palliative care will not threaten provider autonomy.
RODRIGUEZ, KERI L.; BARNATO, AMBER E.; ARNOLD, ROBERT M.
To provide a detailed description of the recommendations of a Palliative Care Service (PCS) and to describe the impact of these recommendations on the care of terminally ill patients in an academic medical center, we describe data from all consecutive patients referred by their attending physicians to the PCS of an academic teaching hospital over a 15-month period. All patients
Paolo L Manfredi; R. Sean Morrison; Jane Morris; Suzanne L Goldhirsch; John M Carter; Diane E Meier
BACKGROUND: General practitioners (GPs) have become more responsible for budget allocation over the years. The 1997 White Paper has signalled major changes in GPs' roles in commissioning. In general, palliative care is ranked as a high priority, and such services are therefore likely to be early candidates for commissioning. AIM: To examine the different commissioning priorities within the primary health care team (PHCT) by ascertaining the views of GPs and district nurses (DNs) concerning their priorities for the future planning of local palliative care services and the adequacy of services as currently provided. METHOD: A postal questionnaire survey was sent to 167 GP principals and 96 registered DNs in the Cambridge area to ascertain ratings of service development priority and service adequacy, for which written comments were received. RESULTS: Replies were received from 141 (84.4%) GPs and 86 (90%) DNs. Both professional groups agreed that the most important service developments were urgent hospice admission for symptom control or terminal care, and Marie Curie nurses. GPs gave greater priority than DNs to specialist doctor home visits and Macmillan nurses. DNs gave greater priority than GPs to Marie Curie nurses, hospital-at-home, non-cancer patients' urgent hospice admission, day care, and hospice outpatients. For each of the eight services where significant differences were found in perceptions of service adequacy, DNs rated the service to be less adequate than GPs. CONCLUSION: The 1997 White Paper, The New NHS, has indicated that the various forms of GP purchasing are to be replaced by primary care groups (PCGs), in which both GPs and DNs are to be involved in commissioning decisions. For many palliative care services, DNs' views of service adequacy and priorities for future development differ significantly from their GP colleagues; resolution of these differences will need to be attained within PCGs. Both professional groups give high priority to the further development of quick-response clinical services, especially urgent hospice admission and Marie Curie nurses.
Barclay, S; Todd, C; McCabe, J; Hunt, T
Due to the changing pattern of disease and ageing population with chronic diseases, palliative care, a much neglected area of Medicine, has now become an important public health issue worldwide. Palliative care is applicable throughout the course of chronic life threatening illnesses and aims at reducing pain and suffering associated with these conditions. It provides pain and symptom control, psychosocial and spiritual support for patients and their families so that patients can enjoy the best quality of life till the end. Bereavement support is also provided following death and this encompasses care of orphans in conditions such as HIV/AIDS. Palliative care is provided by a team of multidisciplinary professionals (doctors, nurses, social workers etc) and volunteers working with patients and families in the hospital, home and hospices within the community. WHO policies on palliative care development contain the essential ingredients of Education, Drug Availability And Effective Government Policy. These are relevant for development of palliative care service and Research activities in Nigeria as clinicians, government officials and health educators can work together to achieve measurable outcomes. PMID:20229741
Soyannwo, O A
There are too few palliative care services for children in resource poor countries. Health carers are overwhelmed with cases of acute illness that need their urgent attention, and chronically ill children with life-limiting diseases have been sidelined. The HIV epidemic in southern Africa revealed the huge needs in our own hospital, and in 2002, we started a hospital-based paediatric palliative care service. It was the first in Africa. We describe here how it developed and expanded in the ensuing years and how it has affected our staff, the children and their families in our care. PMID:23898158
Molyneux, Elizabeth M; Lavy, Vicky; Bunn, Mary; Palmer, Zoe; Chiputula, Fred
A sample of 248 individuals aged 75 years or more were assessed to ascertain their opinions and attitudes with regards to palliative podiatric care. 48% of the sample received no formal podiatric care. The podiatric service provision offered to the remaining 52% is reported.
V. L. S Crawford; R. L Ashford; B McPeake; R. W Stout
Evidence suggests that the utilisation of community palliative care services varies considerably according to different patient characteristics. Most literature describes this variability, but does not address why such differences exist. Exploring the processes underpinning referral making rather than simply describing the outcomes of referrals may further our understanding of this variability. The aim of this article was to investigate the influences on referral decisions made within community palliative care services. A qualitative case study strategy was adopted, studying three Primary Care Trusts in England, UK. Data collection used multiple methods (interviews, observation and documentary analysis) from multiple perspectives (including general and specialist palliative care professionals, patients, managers and commissioners). Two core influences on the way health care professionals made referral decisions are identified. First, their perception of their own role in providing palliative care; autonomous professionals make independent judgements about referrals, influenced by their expertise, workload, the special nature of palliative care and the relationship they develop with patients. Second, their perception about those to whom they may refer; professionals report needing to know about services to refer to, and then make a complex judgement about the professionals involved and what they could offer the referrer as well as the patient. These findings indicate that many more factors than an assessment of patients' clinical need affect referrals within community palliative care services. It appears that personal, inter-personal and interprofessional factors have the potential to shape referral practices. Practitioners could be more explicit about influences on decision making, and policy makers take account of these complex influences on referrals rather than just mandating change. PMID:18433963
Walshe, Catherine; Chew-Graham, Carolyn; Todd, Chris; Caress, Ann
Palliative care is medical care focused on the relief of suffering and support for the best possible quality of life for patients facing serious, life-threatening illness and their families. It aims to identify and address the physical, psychological, and practical burdens of illness. Palliative care may be delivered simultaneously with all appropriate curative and life-prolonging interventions. In practice, palliative care
Diane E. Meier
Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life-altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non-pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones. PMID:18491833
Geoghan, Darlene A
Palliative care has been challenged to share its message with a wider audience, and for many years it has been articulating an approach that is suitable for all patients. However, it is not clear how widely this message has been accepted. As part of a study into end-of-life care for heart failure, we conducted seven focus groups with doctors in general practice, palliative medicine, cardiology, geriatrics and general medicine. In these, we explored doctors' understanding of palliative care. Participants displayed a reasonable grasp of the wider concept of palliative care, but the specialists' role was ill-defined, reflected in scepticism about their place outside of cancer. Perceptions of palliative care fell into three broad areas: it was more than a service, about managing dying, and the concern of nurses, rather than doctors. Palliative care was welcomed as providing permission to fail, whilst representing a dilemma between quantity and quality of life for the interviewees. Our work suggests that specialist palliative care has been partially successful in getting their message across, and poor understanding or receptivity are not major barriers to implementing palliative care. Educational or other interventions to implement change in palliative care need to acknowledge the complex interaction of factors influencing physicians' behaviour. PMID:16903402
Hanratty, Barbara; Hibbert, Derek; Mair, Frances; May, Carl; Ward, Chris; Corcoran, Ged; Capewell, Simon; Litva, Andrea
Evidence suggests that the utilisation of community palliative care services varies considerably according to different patient characteristics. Most literature describes this variability, but does not address why such differences exist. Exploring the processes underpinning referral making rather than simply describing the outcomes of referrals may further our understanding of this variability. The aim of this article was to investigate the
Catherine Walshe; Carolyn Chew-Graham; Chris Todd; Ann Caress
Most of the research in palliative medicine is of a descriptive nature. Clinical practice is based upon clinical experience rather than upon research. The level of appropriate research reduces the chance for improvement of palliative care. Ethical and methodological obstacles seem to be prominent in palliative care research. The Declaration of Helsinki is generally accepted as an ethical code of
S Kaasa; F De Conno
In many countries, specialist palliative day care for patients with life-limiting conditions is provided by specific teams of professionals from a range of relevant disciplines. During 2006 to 2007, the day care services at a hospice in the U.K. were redesigned so that specialist palliative care sessions replaced the existing long-established, traditional day care model. The purpose of this study was to enhance the understanding of those aspects of the service that the users valued most (the "X-factor"). Qualitative data were collected via semistructured interviews with 29 patients and eight carers. These data were subjected to a framework analysis. The users of the service used poignant and powerful words to describe the special qualities that they valued, some phrasing it as the X-factor. The data are presented under three themes: the quality of the staff; the sense of community; and relationships. Of these, the relationships between and within the staff and patient groups held the greatest significance for the patients. Service providers need to recognize that opportunities for the formation of relationships between the patients, staff, and carers are of utmost importance when designing palliative day care services. PMID:21595812
Hyde, Val; Skirton, Heather; Richardson, Janet
The goals of the work described in this paper were to describe palliative day care from the patient's perspective. Five palliative day care centres in the UK are described. The study subjects were new referrals to the five palliative day care centres, which provided facilities for medical and nursing assessment and also for social and therapeutic activities. This reflects the range of palliative day care services provided in the London region. Three interviews were carried out with each patient over a 3-month period. The descriptive data were examined for content, and the themes were analysed for the frequency of responses within and between interviews. The responses were also examined within three different models of day care (defined by the services). In all, 120 day care patients were recruited from the five centres. Patients attending for day care were mainly white, over 65 years old, retired, and with a cancer diagnosis. These were a representative sample of day care patients in the London region. Patients attended day care to 'meet people' and 'get them out of home' and found the environment 'nice and friendly'. The relationships with the staff and volunteers were also important, and they enjoyed the various activities. At each interview the most important theme identified was 'meeting people'. For this to be supported it would mean encouraging the activities within day care that provide patients with an environment in which they can meet people. This will mean different things to different people, as highlighted in the different philosophies obtained at individual centres. PMID:12324811
Goodwin, Danielle M; Higginson, Irene J; Myers, Kathy; Douglas, Hannah-Rose; Normand, Charles E
Numerous accounts document the difficulty in obtaining accurate data regarding the extent and composition of palliative care services. Compounding the problem is the lack of standardisation regarding categorisation and reporting across jurisdictions. In this study, we gathered both quantitative and spatial--or geographical--data to develop a composite picture that captures the extent, composition and depth of palliative care in the Canadian province of British Columbia (BC). The province is intensely urban in the southwest and is rural or remote in most of the remainder. For this study, we conducted a detailed telephone survey of all palliative care home care teams and facilities hosting designated beds in BC. We used geographic information systems to geocode locations of all hospice and hospital facilities. In-home care data was obtained individually from each of five BC regional health authorities. In addition, we purchased accurate road travel time data to determine service areas around palliative facilities and to determine populations outside of a 1-hour travel time to a facility. With this data, we were able to calculate three critical metrics: (i) the population served within 1 hour of palliative care facilities--and more critically those not served; (ii) a matrix that determines access to in-home palliative care measured by both diversity of professionals as well as population served per palliative team member; and (iii) a ranking of palliative care services across the province based on physical accessibility as well as the extent of in-home care. In combination, these metrics provide the basis for identifying areas of vulnerability with respect to not meeting potential palliative care need. In addition, the ranking provides a basis for rural/urban comparisons. Finally, the protocol introduced can be used in other areas and provides a means of comparing palliative care service provision amongst multiple jurisdictions. PMID:20561070
Schuurman, Nadine; Crooks, Valorie A; Amram, Ofer
Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included. PMID:21628042
Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie
A telephone survey was conducted to gather preliminary data in order to identify the nature of palliative day care provision in the UK. A random sample of 131 day centres was taken from 17 regional locations in the UK. providing a 60% representation out of a total of 215 adult day care facilities. A combination of a structured and semistructured interview schedule was used to collect the data. The results obtained from this preliminary survey provided further information on the nature, range, and types of services that are currently provided by UK palliative day care centres; management and organizational issues; and the nature of common problems and care issues of patients attending day centres. Data from the study provided further information on the current status of day care services. The implications for future evaluative research are discussed, particularly in the area of the impact and cost-effectiveness of day care services and the potential work with regard to different models of service provision. PMID:9743835
Copp, G; Richardson, A; McDaid, P; Marshall-Searson, D A
The aim of this paper was to examine the use of palliative care services by members of black/minority ethnic communities. Referral patterns of hospital consultants and general practitioners (GPs) to Birmingham St Mary's Hospice were examined. Semistructured interviews were carried out to explore doctors' perceptions of the benefits and limitations of hospice services for their black/minority ethnic patients and to identify potential barriers to referral. In total, 27 doctors were interviewed: 15 hospital consultants and 12 GP. The GPs were selected according to size of practice within areas of Birmingham with significant black/minority ethnic populations. Referrals received by the hospice for the period April 1996 to November 1997 were collected from the Hospice's computerized database. Results show that, compared to white Europeans, there was an underutilization of day care and inpatient hospice services by members of black/minority ethnic communities. Doctors did, however, refer their black/minority ethnic patients for hospice home-care services: 8.5% of referrals received by the hospice were for nonwhite patients. This referral rate increased to 19.3% in specific postcode areas known to have significant black/minority ethnic communities. Further research is needed to establish levels of awareness, explore attitudes towards palliative care services and assess the demand for specific services within various black/minority ethnic communities. PMID:11219877
Karim, K; Bailey, M; Tunna, K
Abstract Posthumous reproduction is an issue fraught with legal, ethical, religious, and moral debate. The involvement of the hospice and palliative care community in this debate may be peripheral due to the fact that other health care professionals would be actually delivering the services. However, the hospice and palliative care community are more likely to treat patients considering posthumous reproduction as they near the end of their lives. This article provides the hospice and palliative care community with a review of the medical, ethical, and legal considerations associated with posthumous reproduction. Having knowledge of these issues, and a list of available resources, will be useful if hospice and palliative care staff find themselves facing a patient or family that is considering posthumous reproduction.
Quinn, Gwendolyn; Bower, Bethanne; Zoloth, Laurie
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.
Home care (HC) is important for patients with cancer as performance status declines. Our study of 1224 patients at a Canadian cancer center examined the impact of an oncology palliative care clinic (OPCC) on HC referral. The HC referral frequency was calculated before and after the first OPCC consultation, in total and according to performance status (Palliative Performance Scale, PPS). Characteristics associated with HC referral were investigated. After the first OPCC consultation, there was an increase in HC referral from 39% (477 of 1224; 49% of those with PPS ?60) to 69% (841 of 1224; 88% of those with PPS ?60). Factors independently associated with HC referral were poor PPS (P < .001) and older age (P = .003). Thus OPCC involvement resulted in markedly increased HC referrals, particularly for older patients with poor performance status. PMID:22777408
Jang, Raymond W; Burman, Debika; Swami, Nadia; Kotler, Jennifer; Banerjee, Subrata; Ridley, Julia; Mak, Ernie; Bryson, John; Rodin, Gary; Le, Lisa W; Zimmermann, Camilla
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…
Pollens, Robin D.
... address specific palliative care issues, such as lymphedema , pain management, sexual functioning, or psychosocial issues. A patient may ... of Cancer Survivorship sponsors research that addresses symptom management for patients ... neuropathy , pain, and sleep problems. Trials that are designed to ...
BACKGROUND: As the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are
Valorie A Crooks; Heather Castleden; Nadine Schuurman; Neil Hanlon
The author worked as a clinical nurse specialist (CNS) in community palliative care in the Central Lancashire area of England when the CNS service was extended to a 9am-to-5pm 7-day service. A project group was set up to canvas some of the key stakeholders for their views on the extension of the service. The group undertook a literature search, a telephone survey of services in other areas that were providing this level of service, and interviews to ascertain the views of district nurses in the locality of the proposed service extension. The extension of service has long been advocated and was one of the key recommendations in the UK Department of Health's peer-review process. Such an extension was implemented following the research phase and was then evaluated by the project lead and the community services manager. The extension was found to be effective in the ongoing monitoring and support of patients. Anecdotally, the CNS team also felt it had been proactive in preventing unnecessary hospital admissions, although this specific aspect is difficult to quantify. This article looks at how the service was developed, how it has evolved over time, and how it works today. Consideration is also given to benefits and limitations. PMID:24356506
The Zimbabwe Rural Palliative Care Initiative is a program to increase access and expand palliative care in rural Zimbabwe. The goal was to add palliative care to existing home-based care teams comprising indigenous rural volunteers. Palliative care expertise is being developed through training and ongoing mentorship provided by Island Hospice Service, headquartered in the capital city of Harare. Specific outcomes relative to palliative care are reported, using the African Palliative Care Association African Palliative Outcome Scale, the Karnofsky Performance Scale, and a Supervision and Mentorship Checklist. Positive impact is documented, and there is significant opportunity for similar outcomes on a national scale. PMID:20619208
Di Sorbo, Philip G; Chifamba, Dickson D; Mastrojohn, John; Sisimayi, Chenjerai N; Williams, S H
Background Palliative care has been proposed for progressive non-cancer conditions but there have been few evaluations of service developments. We analysed recruitment, compliance and follow-up data of a fast track (or wait list control) randomised controlled trial of a new palliative care service – a design not previously used to assess palliative care. Methods/Design An innovative palliative care service (comprising a consultant in palliative medicine, a clinical nurse specialist, an administrator and a psychosocial worker) was delivered to people severely affected by multiple sclerosis (MS), and their carers, in southeast London. Our design followed the MRC Framework for the Evaluation of Complex Interventions. In phase II we conducted randomised controlled trial, of immediate referral to the service (fast-track) versus a 12-week wait (standard best practice). Main outcome measures were: compliance (the extent the trial protocol was adhered to), recruitment (target 50 patients), attrition and missing data rates; trial outcomes were Palliative Care Outcome Scale and MS Impact Scale. Results 69 patients were referred, 52 entered the trial (26 randomised to each arm), 5 refused consent and 12 were excluded from the trial for other reasons, usually illness or urgent needs, achieving our target numbers. 25/26 fast track and 21/26 standard best practice patients completed the trial, resulting in 217/225 (96%) of possible interviews completed, 87% of which took place in the patient's home. Main reasons for failure to interview and/or attrition were death or illness. There were three deaths in the standard best practice group and one in the fast-track group during the trial. At baseline there were no differences between groups. Missing data for individual questionnaire items were small (median 0, mean 1–5 items out of 56+ items per interview), not associated with any patient or carer characteristics or with individual questionnaires, but were associated with interviewer. Conclusion This is the first time a fast track (or wait list) randomised trial has been reported in palliative care. We found it achieved good recruitment and is a feasible method to evaluate palliative care services when patients are expected to live longer than 3–6 months. Home interviews are needed for a trial of this kind; interviewers need careful recruitment, training and supervision; and there should be careful separation from the clinical service of the control patients to prevent accidental contamination. Trial Registration Clinical Trials.Gov NCT00364963
Higginson, Irene J; Hart, Sam; Burman, Rachel; Silber, Eli; Saleem, Tariq; Edmonds, Polly
... Practice For Patients and Families Partner Sponsor Palliative Care Tools, Training & Technical Assistance The Center to Advance ... The Joint Commission (TJC) Advanced Certification for Palliative Care Programs Learn More Access Featured Resources DY 2012 ...
The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices) and two based at home (the so-called home-based hospitalization and integrated home-based care programs). Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.
Benini, Franca; Spizzichino, Marco; Trapanotto, Manuela; Ferrante, Anna
How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five
David Field; Julia Addington-Hall
The provision of comprehensive cancer care in an increasingly complex landscape necessitates that oncology providers familiarize themselves with the application of palliative care. Palliative care is a learnable skill. Recent endeavors in this arena have demonstrated that providing palliative care is part and parcel with providing compassionate and high-quality cancer care, specifically as it pertains to physical and emotional outcomes for patients and their caregivers alike. The basic tenets of providing palliative care emphasize: frequent and honest communication, routine and systematic symptom assessment, integration of spiritual assessments, and early integration of specialized hospice and palliative care resources as a patient’s circumstances evolve. This article will endeavor to review and synthesize recent developments in the palliative care literature, specifically as they pertain to the oncologist as a primary palliative care provider.
Rangachari, Deepa; Smith, Thomas J.
Since the early days of the discipline, the fundamental principles of palliative care have been focusing on recognizing patient "overall suffering" and the necessity for caregivers to work as a team. Besides curative medicine, it becomes necessary to acknowledge a caring medicine which, based on the relationship to the sick one, aims at establishing with the latter a real life project until their very last days. To the patient, considered as a "subject of care", a man or a woman living up to the very last breath, the team will offer supportive care, quality of life, individualized care, in a climate of real confidence, an essential component of any relationship. In palliative supportive care, techniques, therapies and specific, effective and quality knowledge are indispensable. Moreover, palliative and supportive care cannot be separated from doubt and questioning, nor limited to a fulfilled and completed mission, since the other's life is and will remain, from their own personal assessment, that of the dying patient who sometimes, in my role of caregiver and witness, I have the privilege to meet. PMID:19642436
Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: A retrospective cohort study.
Background: It has been demonstrated that most patients in the terminal stages of cancer would benefit from palliative home-care services. Aim: The aim of this study was to assess the effectiveness of appropriate palliative home-care services in reducing hospital admissions, and to identify factors predicting the likelihood of patients treated at home being hospitalized. Design: Retrospective cohort study. Setting/participants: We enrolled all 402 patients listed by the Local Health Authority No. 5, Veneto Region (North-East Italy), as dying of cancer in 2011. Results: Of the cohort considered, 39.9% patients had been taken into care by a palliative home-care team. Irrespective of age, gender, and type of tumor, patients taken into care by the palliative home-care team were more likely to die at home, less likely to be hospitalized, and spent fewer days in hospital in the last 2 months of their life. Among the patients taken into care by the palliative home-care team, those with hematological cancers and hepatocellular carcinoma were more likely to be hospitalized, and certain symptoms (such as dyspnea and delirium) were predictive of hospitalization. Conclusions: Our study confirms the effectiveness of palliative home care in enabling patients to spend the final period of their lives at home. The services of a palliative home-care team reduced the consumption of hospital resources. This study also provided evidence of some types of cancer (e.g. hematological cancers and hepatocellular carcinoma) being more likely to require hospitalization, suggesting the need to reconsider the pathways of care for these diseases. PMID:24367058
Riolfi, Mirko; Buja, Alessandra; Zanardo, Chiara; Marangon, Chiara Francesca; Manno, Pietro; Baldo, Vincenzo
Numerous barriers exist to the timely introduction of palliative care in patients with advanced chronic obstructive pulmonary disease (COPD). The complex needs of patients with advanced COPD require the integration of curative-restorative care and palliative care. Palliative care and pulmonary rehabilitation are both important components of integrated care for patients with chronic respiratory diseases. Pulmonary rehabilitation provides the opportunity to introduce palliative care by implementing education about advance care planning. Education about advance care planning addresses the information needs of patients and can be an effective strategy to promote patient-physician discussion about these issues. PMID:24874135
Janssen, Daisy J A; McCormick, James R
Objectives To operationalise the concept of 'advanced practice roles' in pharmacy within the new integrated regionalised palliative care service model outlined in the Palliative Care Services Plan 2009-2016, SA Health. Methods A working group was established under the auspices of the Palliative Care Clinical Network to progress the development of advanced practice pharmacist roles for regionalised palliative care services. A pharmacy stakeholder forum was conducted in December 2010 to provide further guidance on the advanced practice pharmacist roles in the following domains: education; network links and partnerships; quality and safety; and research. Results Advanced practice pharmacist positions were created for each of the three regionalised palliative care services in South Australia (SA). Funding was obtained for a Statewide Palliative Care Pharmacy Network project, to build a sustainable community-based palliative care pharmacy network. Advanced practice pharmacists commenced in the regionalised palliative care services of SA on 4 October 2011. Conclusions The Statewide Palliative Care Clinical Network and the SA Palliative Care Plan provided a policy framework that supported involvement and advocacy in the planning of the advanced practice pharmacist roles. Collaboration between leaders in workforce reform, service planners, specialist palliative care providers and the pharmacy sector was a key enabler for developing the advanced practice pharmacist positions for regionalised palliative care services. What is known about the topic? The advanced practice palliative care pharmacist role reflects a new direction for the discipline of pharmacy and has been embraced at a time when a nationally endorsed Advanced Pharmacy Practice Framework has been published, while recognising that registration for pharmacists in Australia currently does not have specific endorsement for advanced practice. What does this paper add? This paper outlines the value of collaboration across settings and sectors. There is an opportunity for these roles to align with the new nationally endorsed framework for advanced practice in pharmacy. What are the implications for practitioners? These new positions strengthen the links between the hospital and community pharmacy sectors to enhance a quality use of medicines approach with improved access to end-of-life medicines for home-based palliative care clients, which actively facilitates a home death for those who choose it. PMID:24670916
Swetenham, Kate; Rowett, Debra; Stephenson, David
Context Despite rapid proliferation of hospital-based palliative care consultation services (PCCS) across the country, there is little description of the dynamic processes that the PCCS and the non-PCCS hospital cultures experience during the institutionalization of a successful PCCS. Objectives To describe the institutionalization of a new PCCS in a quaternary care academic medical center (AMC) and highlight two themes, cost and quality, that pervaded the dynamics involved from the inception to the successful integration of the service. Methods Ethnography using longitudinal field observations, in-depth interviews, and the collection of artifacts. The study was performed in a 750-bed quaternary care ACM in the northeastern region of the U.S. Participants were a purposefully selected sample (n = 79) of (a) senior-level institutional administrators, including clinical leaders in nursing, medicine, and social work, (b) clinicians who used the PCCS, either commonly or rarely, and (c) members of the PCCS core and extended teams. Results Key infrastructure components that contributed to the successful integration of the PCCS included: top level interprofessional administrative buy-in to the quality and cost arguments for PCCS, PCCS leadership selection, robust data collection strategies emphasizing quality outcome data, the adoption of the “physician referral only” rule, and incremental and sustainable growth. The PCCS service has grown an average of 23% per year from 2003–2009. Conclusion An in-depth understanding of the dynamic interaction of the infrastructures and processes of a successful institutionalization, in their unique complexity, may help other PCCSs identify and negotiate attributes of their own circumstances that will increase their chances for successful and sustainable implementation.
Norton, Sally A.; Powers, Bethel Ann; Schmitt, Madeline H.; Metzger, Maureen; Fairbanks, Eileen; DeLuca, Jane; Quill, Timothy E.
... Questions Frequently Asked Questions 1. What is palliative care and when is it provided? Palliative care is ... Does my child have to be in hospice care to receive palliative care? No, your child does ...
Palliative care is developed primarily outside academic institutions and with a primary focus upon service development. Initiatives to formalise the research structure were taken in Europe in 1996 by the European Association for Palliative Care (EAPC) through the establishment of the EAPC research network, and in 1998 in United Kingdom through the establishment of a palliative care research society.Most studies
Stein Kaasa; Lukas Radbruch
Nutrition in palliative care and at the end of life should be one of the goals for improving quality of life. It is important to address issues of food and feeding at this time to assist in the management of troublesome symptoms as well as to enhance the remaining life. While this paper focuses upon the nutritional aspects of cancer in palliative care, the sentiments are applicable to other serious chronic illnesses such as advanced cardiac failure, chronic obstructive pulmonary disease and dementia. Cancer and its treatments exert a major impact upon physical and psychological reserves and at the end of life problems with appetite and the ability to eat and drink compound such impact. The aims of nutritional care minimize food-related discomfort and maximize food enjoyment. Identification of any nutritional problems can facilitate the employment of strategies which need to be discussed with the patient and their families and reviewed regularly as conditions change. Ethical questions will be raised concerning the provision of food and fluids to a person nearing the end of their life. Nurses need to acknowledge that food has greater significance than the provision of nutrients. PMID:19966682
The aim of palliative care is to improve the quality of life (QOL) of patients with a limited life expectancy in a comprehensive multidisciplinary approach. It encompasses consideration of medical, physical, psychosocial and spiritual problems, including treatment and help from a team of various professionals. Palliative care often extents to the patient's families and may continue after the death of the patient. Half of all head and neck cancer patients will die of their malignancy within 5 years of diagnosis. The primary medical issues affecting QOL at the end of life are communication problems due to laryngectomy or tracheostomy, disturbed eating and drinking due to surgery and radiotherapy, edematous changes of the face and neck with resultant functional and cosmetic consequences, as well as strong-smelling ulcerated wounds, which often lead to social isolation. General symptoms occurring at the end of life include pain, anxiety, different types of dyspnea and acute bleeding. All therapeutic approaches applied during the last phase of life must be questioned regarding their real efficacy and side effects. Consideration of the patient's wishes is of the highest priority. PMID:24718562
The author, former chief of a medical department and experienced in quality management, describes the development of quality standards by palliative ch, the Swiss Society for Palliative Care. These standards are the basis for explicit quality-criteria. The performance of an institution for palliative care is evaluated against these criteria, during an audit and peer review. Further information is given concerning the label Quality in Palliative Care. The author describes the importance oft the PDCA-cycle as an instrument for permanent improvement. Institutions with little experience in quality management are adviced to start on a smaller scale and use internal audits. Finally the author gives some thoughts as to the limitations of quality management in palliative care. PMID:22334204
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
Addington-Hall, Julia M; Karlsen, Saffron
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Summary The confluence of enhanced attention to primary care and palliative care education presents educators with an opportunity\\u000a to improve both (as well as patient care) through integrated teaching. Improvements in palliative care education will have\\u000a benefits for dying patients and their families, but will also extend to the care of many other primary care patients, including\\u000a geriatric patients and those
Susan D. Block; George M. Bernier; LaVera M. Crawley; Stuart Farber; David Kuhl; William Nelson; Joseph O’Donnell; Lewis Sandy; Wayne Ury
A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care. PMID:23689367
Beng, Tan Seng; Guan, Ng Chong; Jane, Lim Ee; Chin, Loh Ee
This article defines palliative care for swallowing disorders as treatment for severe and chronic dysphagia or intractable aspiration when the recovery of normal swallowing is not anticipated and attempts to restore normal swallowing have been unsuccessful. Palliative treatment for dysphagia is not only for the dying patient because patients with difficulty swallowing can live for a long time. Palliative care for dysphagia is aimed at maximizing swallowing function, maintaining pulmonary health, and supporting healthy nutrition despite the impaired ability to swallow. When despite all attempts at intervention a patient becomes totally unable to swallow, the goal of therapy changes toward finding ways to provide adequate nutrition for the patient. PMID:19134493
Langmore, Susan E; Grillone, Gregory; Elackattu, Alphi; Walsh, Michael
Advanced dementia is a terminal condition; however, research has revealed that affected individuals are subjected to multiple intrusive and burdensome interventions. Individuals with advance dementia require palliative care long before their death. This article reviews selected approaches that support personhood, explain behavior management principles, assure meaningful connections for activities of daily living, minimize weight loss, and explain advance directives and medical management best practices in palliative care for advanced dementia. PMID:19904852
Long, Carol O
... years. Portraits of Life, Love and Legacy through Pediatric Palliative Care February, 2013 This project was inspired ... film is to increase awareness and understanding of pediatric palliative care. It showcases what care can be ...
A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness. PMID:23977778
Daly, Donnelle; Matzel, Stephen Chavez
The heart failure illness trajectory is both complex and unpredictable, which makes providing palliative care services to patients with heart failure a challenge. As a result, although services are needed, few tend to be offered beyond basic medical management. The traditional model of palliative care is typically based on palliative care being considered a system of care delivery most appropriate for patients with a predictable illness/death trajectory, such a terminal cancer. This type of model, which is based on the ability to predict the course of a terminal disease, does not fit the heart failure trajectory. In this paper, we propose a new model of palliative care that conceptualizes palliative care as a philosophy of care that encompasses the unpredictable nature of heart failure.
Hupcey, Judith E.; Penrod, Janice; Fenstermacher, Kimberly
Abstract Background Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Objective Our objective was to obtain in-depth information about palliative care clinics. Methods We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Results Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked “pain management” and “determining goals of care” as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Conclusions Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices must plan for increased staffing and develop a sustainable financial model.
Thai, Julie N.; Bakitas, Marie A.; Meier, Diane E.; Spragens, Lynn H.; Temel, Jennifer S.; Weissman, David E.; Rabow, Michael W.
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.
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.
Michelson, Kelly Nicole; Steinhorn, David M.
End of life care: a discursive analysis of specialist palliative care nursing Aim. The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. Background.
Julie K. Skilbeck; Sheila Payne
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.
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
Downing, J; Marston, J; Muckaden, Ma; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P
... to some form of palliative medicine,” said Robert Holloway, M.D., M.P.H., lead author of ... in the area of palliative care so far,” Holloway said. Nearly 800,000 people have strokes annually. ...
Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice.
Muckaden, Maryann; Dighe, Manjiri; Balaji, PD; Dhiliwal, Sunil; Tilve, Prajakta; Jadhav, Sunita; Goswami, Savita
Home care nursing occurs in a complex care environment. Nurses working in this setting care for a wide array of individuals who often are sicker and more complex than ever before. The high prevalence of wounds among these individuals requires that home care nurses have a certain level of knowledge to provide excellent care. Many times, individuals with wounds do not have the capacity to heal or are burdened with numerous symptoms affecting quality of life. In these cases, the home care nurse must understand concepts of palliative wound care to alleviate symptoms with the goal of improving quality of life. PMID:24326475
Dale, Barbara; Emmons, Kevin R
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario for the 12-month period both before and after services at Roger's House (RH, a paediatric hospice) was made available. The opening and operation of RH for providing respite care resulted in a minimization of operational costs (n = 66 patients, mean decrease of $4,251.95 per month per patient). PMID:21739841
Pascuet, Elena; Cowin, Lloyd; Vaillancourt, Régis; Splinter, William; Vadeboncoeur, Chris; Dumond, Lynn Grandmaison; Ni, Andy; Rattray, Marion
Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten. PMID:21419263
Huffman, Joan L
Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten. PMID:22405433
Huffman, Joan L
ABSTRACT OBJECTIVE To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members. DESIGN Phenomenologic approach using qualitative in-depth interviews. SETTING A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients. PARTICIPANTS Ten recently bereaved aboriginal family members. METHODS Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness. MAIN FINDINGS First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences. CONCLUSION Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care.
Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris
The popularity of complementary and alternative medicine (CAM) has increased tremendously in recent years. Thus, it is imperative to distinguish between alternative therapies that can be dangerous and complementary therapies that are primarily palliative and augment conventional treatment. Memorial Sloan-Kettering Cancer Center's Integrative Medicine Service offers complementary therapies to patients in an attempt to improve quality of life and provide symptom management. In addition to clinical services, it also provides education to health care professionals and the public and performs clinical and laboratory research on complementary modalities and the antitumor properties of botanicals. If CAM is to be accepted by mainstream medicine, research must be done usingstandard research methodologies. PMID:12518835
Zappa, Simone B; Cassileth, Barrie R
Caring is an attribute of palliative nursing that is assumed to be fundamental. However, as the sophistication of palliative care increases, the liberal art of caring has become submerged under the weight of medical and pharmacological sciences. The nursing profession defends caring as the essence of its practice yet caring work in the palliative environment receives relatively little attention in research or in literature generally. Although it is accepted that nurses' caring work sometimes involves intimate and private aspects of patient care, the value and positive outcomes of caring should not remain hidden. Palliative nurses have special but tentative opportunities to prove the value of caring and define the complexity of caring work. This article argues that nurses need to reclaim the caring ethic and demonstrate its worth. PMID:11951402
The gold standards framework (GSF) is a practice-based system aimed at improving the organisation and quality of palliative care services for patients who are at home in their last 12 months of life. The aim is for patients to receive a better quality service with greater control over their care and an increased likelihood they will die where they choose. PMID:15631387
Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques allow the diversity of objectives in treating patients such as reducing anxiety and stress, relaxation, pain control, reducing confusion spiritual, emotional expression, experience, self-awareness, encourage creative expression, causing mood swings - emotional, cognitive and behavioral, inducing the patient's imagination, enabling patient's chronological classification of life experiences, and the elaboration of unresolved pain, sorrow or errors. Adequate selection and use of musical techniques in palliative care in the service of achieving the best possible quality of life for patients at the end of life. PMID:22994012
Skrbina, Dijana; Simunovi?, Dubravka; Santek, Vjerocka; Njegovan-Zvonarevi?, Tatjana
In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or
Barry M. Kinzbrunner
A new study suggests that introducing palliative care consultations while patients are still in the ED, rather than waiting until after patients have been admitted, can significantly reduce inpatient length of stay. Experts say the approach may also improve quality of care while patients are in the hospital, and do a better job of meeting patient goals. *Researchers analyzed 1,435 palliative care consults, including 50 that took place in the ED over a four-year period. They found that consultation in the ED was associated with hospital stays that were 3.6 days shorter, on average, than the hospital stays of patients who received palliative care consults following admission to the hospital. * Palliative care typically includes an extensive goals-of-care discussion with patients and families, symptom management, and other services focused on meeting patient needs and improving quality of life. * Experts say the top four groups of patients who can benefit from goals-of-care discussions are patients with metastatic cancer, advanced congestive heart failure, advanced chronic obstructive pulmonary disease, and advanced dementia. *ED administrators interested in making improvements in their approach to palliative care should perform a needs assessment, forge partnerships with community resources, and identify a champion, according to palliative care experts. PMID:24640289
Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)
Sherman, Deborah Witt
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.
McNeil, Ryan; Dilley, Laura B; Guirguis-Younger, Manal; Hwang, Stephen W; Small, Will
Abstract Background: The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. Objective: This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. Results: At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. Conclusions: Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care. PMID:24432817
Ela, Sara; Espinosa, Jose; Martínez-Muñoz, Marisa; Lasmarías, Cristina; Beas, Elba; Mateo-Ortega, Dolors; Novellas, Anna; Gómez-Batiste, Xavier
Palliation has been an essential, if not the primary, activity of surgery during much of its history. However, it has been only during the past decade that the modern principles and practices of palliative care developed in the nonsurgical specialties in the United States and abroad have been introduced to surgical institutions, widely varied practice settings, education, and research. PMID:22405429
Dunn, Geoffrey P
Palliation has been an essential, if not the primary, activity of surgery during much of its history. However, it has been only during the past decade that the modern principles and practices of palliative care developed in the nonsurgical specialties in the United States and abroad have been introduced to surgical institutions, widely varied practice settings, education, and research. PMID:21419251
Dunn, Geoffrey P
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
Zeinah, Ghaith F Abu; Al-Kindi, Sadeer G; Hassan, Azza Adel
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
Johannigman, Suzanne; Eschiti, Valerie
Home care and hospice nurses provide invaluable care for patients with Alzheimer's Disease and related disorders. Often these patients have advanced disease and may be approaching the end of life. This article describes a palliative care approach to providing comprehensive assessment, care planning, and interventions enhancing the functioning and quality of life for both the patient and family coping with this illness. PMID:12544465
Palliative care in the U.S. has evolved from a system primarily reliant on community-based hospices to a combined model that includes inpatient services at most large hospitals. However, these two dominant approaches leave most patients needing palliative care-those at home (including nursing homes) but not yet ready for hospice-unable to access the positive impacts of the palliative care approach. We propose a community-based palliative care (CPC) model that spans the array of inpatient and outpatient settings in which palliative care is provided and links seamlessly to inpatient care; likewise, it would span the full trajectory of advanced illness rather than focusing on the period just before death. Examples of CPC programs are developing organically across the U.S. As our understanding of CPC expands, standardization is needed to ensure replicability, consistency, and the ability to relate intervention models to outcomes. A growing body of literature examining outpatient palliative care supports the role of CPC in improving outcomes, including reduction in symptom burden, improved quality of life, increased survival, better satisfaction with care, and reduced health care resource utilization. Furthermore the examination of how to operationalize CPC is needed before widespread implementation can be realized. This article describes the key characteristics of CPC, highlighting its role in longitudinal care across patient transitions. Distinguishing features include consistent care across the disease trajectory independent of diagnosis and prognosis; inclusion of inpatient, outpatient, long-term care, and at-home care delivery; collaboration with other medical disciplines, nursing, and allied health; and full integration into the health care system (rather than parallel delivery). PMID:23159685
Kamal, Arif H; Currow, David C; Ritchie, Christine S; Bull, Janet; Abernethy, Amy P
Palliative care is multidimensional care of patients with life-limiting diseases concurrent with active disease management, together with support for their caregivers. Components of primary palliative care include management of physical and psychological symptoms and discussions about goals of care and end of life wishes. Primary care physicians and all specialty physicians should provide primary palliative care for their chronically ill patients. This paper reviews the benefits of palliative care and provides resources for its implementation. PMID:25011328
Honeycutt, Pamela J; Bickel, Denise
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
Low, J A; Pang, W S
Abstract Background Cancer causes significant symptom burden and diminished quality of life. Despite the expansion of supportive and palliative care services (SPCS), little is known about rates of utilization and barriers to access to these services among oncology outpatients. Methods We performed a cross-sectional survey in three outpatient medical oncology clinics. Patients with a diagnosis of breast, lung, or gastrointestinal (GI) cancer and a Karnofsky score of ?60 were included. Patients reported their use of SPCS and any perceived barriers. Multivariable logistic regression was used to identify factors associated with SPCS use. Results Among 313 participants, (50.5%) had not used SPCS since cancer diagnosis. The most common services used were nutrition (26.5%), psychiatric/psychological counseling (29.7%), and physical therapy (15.1%). Pain/palliative care and cancer rehabilitation consultations were used by 8.5% and 4.1% of participants, respectively. In multivariate analysis, graduate education was associated with greater SPCS use (adjusted odds ratio [AOR] 2.14, 95% confidence interval [CI] 1.08-4.26) compared with those with high school or less, whereas having lung cancer was associated with less SPCS use (AOR 0.48, 95% CI 0.24-0.96) when compared with those having breast cancer. The biggest reported barriers to using SPCS were a lack of awareness (22.4%) and lack of physician referral (23%). Conclusions Approximately half of these patients had not accessed SPCS since cancer diagnosis and cite lack of awareness and physician nonreferral as barriers. Further research is needed to understand patients' needs and beliefs regarding SPCS, and how to integrate SPCS into conventional treatments to improve cancer care.
Kumar, Pallavi; Casarett, David; Corcoran, Amy; Desai, Krupali; Li, Qing; Chen, Jinbo; Langer, Corey
Abstract Background: Cancer causes significant symptom burden and diminished quality of life. Despite the expansion of supportive and palliative care services (SPCS), little is known about rates of utilization and barriers to access to these services among oncology outpatients. Methods: We performed a cross-sectional survey in three outpatient medical oncology clinics. Patients with a diagnosis of breast, lung, or gastrointestinal (GI) cancer and a Karnofsky score of ?60 were included. Patients reported their use of SPCS and any perceived barriers. Multivariable logistic regression was used to identify factors associated with SPCS use. Results: Among 313 participants, (50.5%) had not used SPCS since cancer diagnosis. The most common services used were nutrition (26.5%), psychiatric/psychological counseling (29.7%), and physical therapy (15.1%). Pain/palliative care and cancer rehabilitation consultations were used by 8.5% and 4.1% of participants, respectively. In multivariate analysis, graduate education was associated with greater SPCS use (adjusted odds ratio [AOR] 2.14, 95% confidence interval [CI] 1.08-4.26) compared with those with high school or less, whereas having lung cancer was associated with less SPCS use (AOR 0.48, 95% CI 0.24-0.96) when compared with those having breast cancer. The biggest reported barriers to using SPCS were a lack of awareness (22.4%) and lack of physician referral (23%). Conclusions: Approximately half of these patients had not accessed SPCS since cancer diagnosis and cite lack of awareness and physician nonreferral as barriers. Further research is needed to understand patients' needs and beliefs regarding SPCS, and how to integrate SPCS into conventional treatments to improve cancer care. PMID:22731514
Kumar, Pallavi; Casarett, David; Corcoran, Amy; Desai, Krupali; Li, Qing; Chen, Jinbo; Langer, Corey; Mao, Jun J
There is a great need for palliative care in Uganda. The framework for the development of such services has been the World Health Organization's (WHO) public health strategy for palliative care, including policy, drug availability, education and implementation. In this model and in much of the literature it is accepted that education has a part to play in the development of palliative care; yet, there is a lack of evaluative literature or an understanding as to the steps required alongside education to develop palliative care services. An evaluation was undertaken of an HIV/AIDS palliative care education strategy in rural Uganda. It aimed to determine the effectiveness of the education strategy and to explore what had taken place in order for any change in practice to be seen. The impact of the programme was seen in different areas and a grounded theory approach was used to look at the emerging themes from the evaluation. Throughout the process it was possible to identify key milestones and changes that had to occur within the district where the training was taking place, in order to help develop palliative care services. To achieve these milestones and make the changes it was necessary not only to provide palliative care training, but also to advocate for palliative care at the district and national levels and work with other stakeholders in the area. Out of this, a model for the development of palliative care in the rural African context has emerged called the 'Nankya model of palliative care development'. Further work needs to be done on validating the model although it appears that the Nankya model is congruent with the WHO's public health approach to palliative care and it is anticipated that it will help stakeholders to understand the process of developing palliative care in the rural setting. PMID:19060798
Background The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification. Aim To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death. Design and setting Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. Method Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed. Results In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital. Conclusion Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.
Harrison, Nadine; Cavers, Debbie; Campbell, Christine; Murray, Scott A
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.
Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)
Strauss, Gerald; Nelson, Barbara J.
Little research has been conducted on nursing home social service staff and end-of-life care in nursing homes. To address this gap, a cross-sectional study on end-of-life issues for people with dementia in nursing homes was conducted in New York State, in which 138 nursing home social service staff participated. This exploratory study examined issues such as perceived confidence, perceived influence,
Supportive and palliative care research tests interventions to improve the quality of life of patients and their families when facing problems associated with a life-threatening illness. Interventions are aimed at the prevention and relief of suffering by means of early identification, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.
Clinical trials for supportive and palliative care explore ways to improve the comfort and quality of life of cancer patients and cancer survivors, such as studying ways to help people prevent or manage nausea, pain, sleep disorders, depression, or other effects from cancer or its treatment.
The emerging role of the advanced practice nurse (APN) as a palliative care provider is gain- ing increased recognition in the United States. The APN' s ability to perform comprehensive physical evaluations, order and interpret diagnostics, and prescribe appropriate medications while receiving reimbursement allow this provider to become a valuable and important dis- cipline in the patient' s plan of
Kim K. Kuebler
Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)
Summary Pancreatic cancer is one of the most lethal malignancies. An estimated 32,300 patients will die of pancreatic cancer in year 2006. It is the tenth most common malignancy in the United State. Despite recent advances in pathology, molecular basis and treatment, the overall survival rate remains 4% for all stages and races. Palliative care represents an important aspect of
Salman Fazal; Muhammad Wasif Saif
Our objective in this study was to summarize the relevant knowledge on depression in palliative care and to provide a framework for clinical, scientific and educational efforts at improving its management. The Research Steering Committee (RSC) of the European Association of Palliative Care (EAPC) established an Expert Working Group (EWG) to address the issue of depression in palliative care. Each
Friedrich Stiefel; Maria Die Trill; Alexandre Berney; Juan Olarte; Darius Razavi
Patients with dementia are an important target group for palliative care since particularly in advanced stages and at the end of life they often have complex health care and psychosocial needs. However, people with dementia have inappropriate access to palliative care. So far, palliative care focuses on cancer patients. Among other reasons, this is due to the different illness trajectories: while in cancer a relatively clear terminal phase is typical, in dementia functional decline is gradual without a clear terminal phase, making advanced care planning more difficult. Good communication among health care providers and with the patient and his/her family is essential to avoid unnecessary or even harmful interventions at the end of life (e.g., inserting a percutaneous endoscopic gastrostomy, PEG). To maintain the patient's autonomy and to deliver health care according to the individual preferences, it is important to appropriately inform the patient and the family at an early stage about the disease and problems that may occur. In this context, advanced directives can be helpful. PMID:22278007
Zieschang, T; Oster, P; Pfisterer, M; Schneider, N
Background Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services. Methods Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically. Results 189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful. Conclusions The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain’ in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.
Palliative care is a treatment model that aims to relieve patient suffering and improve quality of life, and is essential for those living with chronic cancer. However, most palliative care referrals are made as a last resort when all other treatment options have failed. This article argues that social workers have an important role in early palliative care discussions because of their unique skill set. Techniques for early introduction of palliative care are addressed, as are ways for empowering patient advocacy. A case narrative of a young woman with chronic cancer is included as an example of the need for ongoing palliative care conversations. PMID:24405240
Palliative care in The Netherlands is growing and the climate for further development is favourable. Although there is a great deal of consensus on the current debates within palliative care, important disagreements persist. These disagreements relate to the history of palliative care within the country, the scope of palliative care, its values, the appropriate institutional context, and the moral acceptability of euthanasia in palliative care. In this paper, the consensus and the disagreements are described and discussed. It is concluded that many disagreements emerge from so-called external goals of palliative care. It is recommended that the debate should refocus on the internal goal of palliative care, which is the quality of life of the patient and his or her loved ones. PMID:12403505
Janssens, R J; ten Have, H A
Dementia accounts for one in three deaths among people aged 65 and over, but end-of-life care for people with dementia is often sub-optimal. Palliative care for people with dementia poses particular challenges to those providing services, and current policy initiatives recommend education and training in palliative care for those working with patients with dementia. However, there are few evaluations of the effectiveness of dementia education and training. This paper presents a narrative review undertaken in 2011-2012 of evaluations of palliative care education for those working with people with dementia at the end of life. A total of eight papers were identified that described and evaluated such palliative care education; none reported benefits for people with dementia. There is a clear need to develop and evaluate educational interventions designed to improve palliative and end-of-life care for people with dementia. Some suggestions for educationally sound approaches are discussed. PMID:24339062
Raymond, Mareeni; Warner, Alex; Davies, Nathan; Baishnab, Elora; Manthorpe, Jill; Iliffe, Steve
Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.
Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert
The number of people with dementia will rise dramatically over the next 20 years. Currently, one in three people over the age of 65 will die with dementia. A PubMed search using MeSH headings for 'dementia' AND 'palliative care' and for specific areas, i.e. enteral feeding. National reports, UK guidelines and policies were also consulted. Advanced dementia is now being perceived as a 'terminal illness' with a similar symptom burden and prognosis to advanced cancer. People with dementia have poor access to good quality end-of-life care. Interventions such as antibiotics, fever management policies and enteral tube feeding remain in use despite little evidence that they improve quality of life or other outcomes. Research is required on the effectiveness of 'holistic' palliative care, outcome measures and the impact on carers and families. PMID:20675657
Sampson, Elizabeth L
Social objectives are poorly specified and evaluated in cancer care. Palliative day care is an example where social objectives are often identified but research has focused on health-care outcomes. A literature review identifies four types of social objective: emotional and spiritual care, general social care, services for families and carers and creative arts. Social objectives include: distinguishing between therapeutic work and leisure and supportive interventions, promoting service continuity, reducing social isolation, increasing social interaction, reassuring introduction to palliative care, rehearsal of reactions to illness with a sympathetic audience, integration of families and carers into care services, respite for carers and creative work for three separable objectives. It is argued that interventions to achieve social objectives may be defined and evaluated in a measurable way. Similarly, social objectives and interventions can be specified at other stages in the cancer journey. PMID:17177900
The Patient Care Travelling Record© (PCTR) is a passport-like health-care summary that, in previous research by the authors, has been found to be a feasible and acceptable tool to convey important clinical information about the palliative care patient. This randomized controlled trial was conducted to determine the effectiveness and efficiency of this Record in improving patient mood, decreasing uncertainty, improving
Elizabeth J. Latimer; Mary Ruth Crabb; Jacqueline G. Roberts; Marion Ewen; Jeremy Roberts
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.
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.
OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine.
Brown, J. B.; Sangster, M.; Swift, J.
Crdoba is a city with 1,300,000 inhabitants located in the center of Argentina. Although Palliative Medicine is a discipline\\u000a that has been present for a little over 10 years, it has not developed in step with demand, owing to lack of political will\\u000a and insufficient support from the Health Administration. However, the existing units have expanded, thanks to the efforts
L. A. Rubio
The use of complementary and alternative medicine (CAM) has grown in popularity both among the general population and among the cancer patients. Cancer patients often use CAM, which is a treatment that is not commonly used in the conventional setting. However, the prevalence of CAM use appears to vary substantially, with reported frequency of use of at least one CAM therapy ranging from 20% to 83.3%. Complementary medicine has become an important aspect of palliative cancer care. Acupuncture, aromatherapy, homeopathy, hypnotherapy, massage, reflexology, relaxation techniques, and spiritual healing are frequently used forms of treatment. The purpose of this article is to provide information about some complementary therapies that are commonly used by cancer patients in the palliative care. PMID:16783665
Yildirim, Yasemin Kuzeyli; Fadilo?lu, Ciçek; Uyar, Meltem
Clinical trials for supportive and palliative care explore ways to improve the comfort and quality of life of cancer patients and cancer survivors. These trials study ways to help people who are experiencing symptoms related to cancer and its treatment, such as nausea, pain, weight loss, sleep disorders, and depression. Some of these trials also look at nutrition, group therapy, and other interventions to help cancer patients and survivors.
Effective delivery of high-quality palliative care requires effective interprofessional team working by skilled healthcare professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional team working in early professional undergraduate medical education. Integrating palliative medicine in undergraduate medical education curricula seems to be a must. In this review, we present as an example the Palliative and End-of-Life Care Curriculum (PEOLC) used in Canada for undergraduate medical education and underline the need for such a national curriculum in Lebanon. One must keep in mind that medical education does not stop at the end of the medical school, ongoing learning needs exist. Continuous medical education in palliative care should also be emphasized; the overall goal is promoting palliative medicine. Respecting and protecting human dignity is the right of every patient. PMID:19534074
Naccache, Nicole; Abou Zeid, Hicham; Nasser Ayoub, Eliane; Antakly, Marie-Claire
Advanced heart failure (HF) is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. Despite a growing body of evidence supporting the integration of palliative care into the overall care of patients with HF and some recent evidence of increased use, palliative therapies remain underused in the treatment of advanced HF. Review of the literature reveals that although barriers to integrating palliative care are not fully understood, difficult prognostication combined with caregiver inexperience with end-of-life issues specific to advanced HF is likely to contribute. In this review, we have outlined the general need for palliative care in advanced HF, detailed how palliative measures can be integrated into the care of those having this disease, and explored end-of-life issues specific to these patients.
LeMond, Lisa; Allen, Larry A.
Purpose/Objectives: To quantify the characteristics of patients who die in the hospital from relapse after allogeneic hematopoietic stem cell transplantation (alloHSCT), explore palliative care integration and end-of-life (EOL) care, and benchmark standards of care.Design: Retrospective chart review cohort study; a cross-sectional survey design guided a national survey.Setting: A chart review was conducted in a large tertiary hospital in Australia. The survey was distributed to leading alloHSCT centers in Australia and New Zealand.Sample: The chart review sample group was patients in the hematology department who had received an alloHSCT, relapsed, and died in the hospital (N = 40). The survey sample group was the most advanced nurse involved in patient care at each facility (N = 14).Methods: A quantitative data collection tool created for chart review, as well as patient notes written by the physician, were examined. The quantitative data collection tool was created for the survey, which was conducted via email or telephone.Main Research Variables: The chart review measured patient demographics, palliative care integration, EOL care, and symptoms. Survey topics included services available, referrals to palliative care services, EOL discussions, and symptom management.Findings: About half of the patients were seen by the palliative care service. Many patients experienced severe symptoms in the terminal phase. Survey participants felt EOL discussions were left until the terminal phase. Participants believed early palliative care integration was beneficial for patients and their family.Conclusions: The chart review demonstrated late integration of palliative care and poor standards of EOL care. Survey results reiterated this and reflected that nurses are supportive of earlier integration of palliative care and improving EOL care.Implications for Nursing: Palliative care should be integrated earlier, and nursing roles have the potential to address unmet needs for these patients. PMID:24969247
Button, Elise B; Gavin, Nicole C; Keogh, Samantha J
Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation. PMID:12725481
Mathew, Alison; Cowley, Sarah; Bliss, Julie; Thistlewood, Gillian
Mrs. Serrano is an 83 year old resident of a Nursing Home. She has been widowed for many years and has lived in the Nursing Home for the past 5 years. Mrs. Serrano has multiple chronic illnesses’ which contribute to her weakness and her inability to care for herself. She also exhibits mild dementia. Her primary caretakers in the facility,
The Emergency Department (ED) is the place where people most frequently seek urgent care. For patients living with chronic disease or malignancy who may be in a crisis, this visit may be pivotal in determining the patients’ trajectory. There is a large movement in education of emergency medicine physicians, hospitalists, and intensivists from acute aggressive interventions to patient-goal assessment, recognizing last stages of life and prioritizing symptom management. Although the ED is not considered an ideal place to begin palliative care, hospital-based physicians may assist in eliciting the patient’s goals of care and discussing prognosis and disease trajectory. This may help shift to noncurative treatment. This article will summarize the following: identification of patients who may need palliation, discussing prognosis, eliciting goals of care and directives, symptom management in the ED, and making plans for further care. These efforts have been shown to improve outcomes and to decrease length of stay and cost. The focus of this article is relieving “patient” symptoms and family distress, honoring the patient’s goals of care, and assisting in transition to a noncurative approach and placement where this may be accomplished.
Mierendorf, Susanne M; Gidvani, Vinita
Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres. PMID:11695096
Crul, B J; van Weel, C
Stroke is the leading cause of disability and one of the most common causes of death worldwide. Outside the setting of acute management, secondary prevention and stroke rehabilitation, little has been written to address the ongoing symptomatic and palliative needs of these patients and their families. In this literature review, we look beyond secondary prevention with the aim of providing evidence-informed management guidelines for the myriad and often under-recognized symptomatic and palliative care needs of stroke survivors. Some of the most common and disabling post-stroke symptoms that are reviewed here include central post-stroke pain, hemiplegic shoulder pain, painful spasticity, fatigue, incontinence, post-stroke seizures, sexual dysfunction, sleep-disordered breathing, depression and emotionalism. We review the role of caregivers and explore ways to support them and, lastly, remind the reader to be perceptive to the patient's spiritual needs. The literature is most robust, including controlled trials, for central post-stroke pain and depression. Synthesis and discussion outside these areas are frequently limited to smaller studies, case reports and expert opinion. While some data exists to guide informed decision-making, there is an urgent need to document best practice and identify appropriate clinical standards for the full spectrum of symptoms experienced by stroke survivors. We present the current and established data to aid health care providers in symptomatic and palliative management of stroke survivors. PMID:22258916
Creutzfeldt, Claire J; Holloway, Robert G; Walker, Melanie
Little attention has been accorded to the terminal course and end-of-life care of patients after dialysis discontinuation. This prospective cohort observational study involves six dialysis clinics in the United States and two clinics in Canada. Data were collected on 131 patients who were undergoing maintenance dialysis and died after treatment discontinuation. Seventy-nine of the patients (60%) were prospectively studied until
Lewis M. Cohen; Michael Germain; David M. Poppel; Anne Woods; Carl M. Kjellstrand
Abstract With global aging and scientific advances extending survival, the number of adults experiencing multiple chronic conditions has grown substantially and is projected to increase by another third between 2000 and 2030. Among the many challenges posed by multimorbidity, some of the most pressing include how to characterize and measure comorbid conditions, understand symptoms and illness burden, and provide person-centered care in the context of competing health care priorities and increasing complexity. In this white paper emanating from a National Institute on Aging supported conference to discuss research gaps at the geriatrics–palliative care interface, the authors review common definitions of multimorbidity; describe the association between multimorbidity and quality of life, functional status, quality of care, and health care utilization; note content and methodological gaps in multimorbidity evidence; and make recommendations regarding research priorities in this area of expanding public health impact.
Zulman, Donna M.
The relief of suffering is one of the aims of health care. Pain relief is a moral obligation in health care, not an optional extra. Doctors have moral obligations to strive to relieve pain, to be competent in basic pain control, and to endeavour to give patients an adequate understanding of their illness and painkillers. The most common moral problem in pain control in terminally ill patients is the conflict between the obligation to relieve suffering and the obligation to prolong life. The law prohibits intentionally causing the death of another person. Debates follow as to what constitutes an intention to cause death, and what actually constitutes a cause of death. At present, doctors are legally permitted to give sedatives and analgesics to terminally ill patients with the intention of relieving suffering, even if life is shortened. The moral principle of the 'double effect' relates to this and is explained. It relies on a distinction between intended and foreseen effects of treatment. Some people dispute the distinction between intended and foreseen effects and claim that the principle of double effect allows doctors who intend euthanasia to carry it out under cover of the law. This debate is explored in the article. Finally, is it ever morally justifiable to end the patient's life on the grounds that this is the only way to end pain? Even if it is, should euthanasia be legalised? A brief comment on these issues, and the roles of law and morality, are made. PMID:10522743
Randall, F M
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.
Hearn, J.; Higginson, I. J.
BACKGROUND: Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study. METHODS: Validation was conducted across 5 African services and
Richard Harding; Lucy Selman; Godfrey Agupio; Natalya Dinat; Julia Downing; Liz Gwyther; Thandi Mashao; Keletso Mmoledi; Tony Moll; Lydia Mpanga Sebuyira; Barbara Panjatovic; Irene J Higginson
Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients.
Given that such a substantial proportion of oncology patients have advanced and/or incurable cancer oncologists invariably face enormous challenges in maintaining or improving the quality of life of this cohort of their practice. The provision of supportive and palliative care for these patients is a core element of quality cancer care. As the primary professional health care provider to the cancer patient, the oncologist has a special, significant, and challenging role in the care of these patients and their families. This article addresses the scope of these responsibilities and challenges and provides some introductory insights relating to practice that will be elaborated upon in the other contributions in this special issue of the Cancer Journal. PMID:20890137
In part 1 of this 2-part series, we discussed principles of palliative care to help understand the goals of treatment in developing a plan of care. This article, Part 2, aims to provide knowledge of practical topical wound management by common wound etiologies and symptoms among persons who would benefit from palliative wound care. PMID:24685751
Emmons, Kevin R; Dale, Barbara; Crouch, Cathy
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
Formica, Marco; Marazzi, Federico; Tamagnone, Michela; Falconi, Daniela; Marengo, Marita; Tattoli, Fabio; Gherzi, Maurizio; Serra, Ilaria; De Prisco, Ornella; Gristina, Giuseppe
In Germany, palliative care has developed rapidly since the establishment of the first palliative care unit in 1983. More improvements in patient-centered care are only possible if legal requirements as well as education of physicians, nurses, and other professionals involved in palliative care are adapted to current needs. This paper provides an overview of legal and regulatory requirements including a critical appreciation of their influence on palliative care in Germany. Only recently has medical education in palliative medicine been implemented as an integral part of medical studies at German universities. Starting in 2014, physicians applying for a license to practice medicine will have to provide a certificate of basic training in this field. The challenge in upcoming years will be the establishment and enhancement of comprehensive, standardized, and quality-controlled education at the universities. Only six universities have established chairs for palliative medicine, and it will be essential to not only establish more chairs but also to involve medical students in the development of the education. Only minimal requirements are specified for education of nurses in palliative care in the legislation. However, standardized and quality-controlled advanced training courses are available. This training is frequently requested as a prerequisite for nurses working in palliative care. Only limited education programs exist for other professional groups that are an important part of the palliative care team. In addition to the development of palliative care for inpatients with an increasing number of palliative care units, hospices, and first chairs of palliative medicine, different forms of ambulant palliative care services have been developed. Changes in the legislation have influenced the situation for home care enormously in the last 5 years, also making it more complex. With the Law for the Consolidation of the Competition in Compulsory Health Insurance ("Gesetz zur Stärkung des Wettbewerbs in der gesetzlichen Krankenversicherung"), a legal claim for palliative home care has been implemented in the fifth book of the social law in 2007. The ambitious goal of full coverage with comprehensive palliative home care has still not been achieved in most locations. However, after initial negotiation difficulties between palliative care providers and health insurance funds, an increasing number of contracts have been made. As a consequence-in addition to more than 240 palliative care units in Germany-more than one hundred palliative care teams have begun work in the field of specialized palliative home care. Legal regulations for the supply of opioids and other medications for the treatment of patients at home have been adapted recently, thus, facilitating fast and comprehensive medical treatment in emergency situations. Overall, the legislation has been adapted significantly, hence, contributing to improvements for patients requiring palliative care. It remains to be seen whether additional adjustments are required in the future. PMID:22290167
Cremer-Schaeffer, P; Radbruch, L
Objectives To identify those factors which adversely affected recruitment to a large multicentre palliative care study. Methods Patient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility—did the patient fulfil the study entry criteria? (2) Accessibility—was it possible to access the patient to be able to inform them about the study? (3) Consent—did the patient agree to participate in the study? The reasons why patients were ineligible, inaccessible or refused consent were recorded. Results 12?412 consecutive referrals to participating clinical services were screened for study inclusion of whom 5394 (43%) were deemed to be ineligible. Of the remaining patients 4617/7018 (66%) were inaccessible to the research team. The most common reasons being precipitous death, ‘gatekeeping’ by clinical staff or rapid discharge. Of the 2410 patients who were visited by the research team and asked to participate in the study 1378 (57%) declined. Overall 8.2% (1018/12?412) of patients screened participated in the study. There were significant differences in recruitment patterns between hospice inpatient units, hospital support and community palliative care teams. Conclusions Systematic monitoring and analysis of patient flows through the clinical trial accrual process provided valuable insights about the reasons for failure to recruit patients to a clinical trial and may help to improve recruitment in future studies.
Stone, Patrick C; Gwilliam, Bridget; Keeley, Vaughan; Todd, Chris; Kelly, Laura C; Barclay, Stephen
Objectives To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change. Design Qualitative study with focus groups. Setting North west England. Participants General practitioners and consultants in cardiology, geriatrics, palliative care, and general medicine. Results Doctors supported the development of palliative care for patients with heart failure with the general practitioner as a central figure. They were reluctant to endorse expansion of specialist palliative care services. Barriers to developing approaches to palliative care in heart failure related to three main areas: the organisation of health care, the unpredictable course of heart failure, and the doctors' understanding of roles. The health system was thought to work against provision of holistic care, exacerbated by issues of professional rivalry and control. The priorities identified for the future were developing the role of the nurse, better community support for primary care, and enhanced communication between all the health professionals involved in the care of patients with heart failure. Conclusions Greater consideration should be given to the care of patients dying with heart failure, clarifying the roles of doctors and nurses in different specialties, and reshaping the services provided for them. Many of the organisational and professional issues are not peculiar to patients dying with heart failure, and addressing such concerns as the lack of coordination and continuity in medical care would benefit all patients. What is already known on this topicPatients with heart failure have unmet needs for health care at the end of lifeSpecialist palliative care services see few patients with heart failureThe national service framework for coronary heart disease endorses the provision of palliative care for heart failureLittle evidence exists on how this care should be provided, and doctors' views are not knownWhat this study addsBarriers to adopting a palliative care approach in heart failure care relate to the current organisation of health services, the difficulties of prognostication, and doctors' understanding of roles and responsibilitiesDoctors believe that the general practitioner should be the central figure in palliative care for heart failure, supported by specialistsDoctors' future priorities are developing the role of nurses, increasing essential community services, such as district nursing, and improving communication with colleagues
Hanratty, Barbara; Hibbert, Derek; Mair, Frances; May, Carl; Ward, Christopher; Capewell, Simon; Litva, Andrea; Corcoran, Ged
In a unique collaboration between palliative care and aged care the Australian government produced Guidelines for a palliative approach in residential aged care, endorsed by the National Health & Medical Research Council in 2006. Specific guidelines for Advance Care Planning (ACP) fit within the broader palliative approach with its emphasis on holistic assessment early in the course of life-threatening disease.
Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers.
Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.
Palliative day care is an expanding service which remains under-researched. Study designs need to be developed to evaluate the costs and outcomes of the service in ways which are meaningful to patients, clinicians and policy-makers. At the same time, these must be open to the same criteria for rigour and reliability as techniques used elsewhere in health and social service evaluation. To this end, a developmental stage of exploratory research was undertaken at the start of a major multicentre trial of palliative day care to meet two clear aims: to understand more about the structure and processes of palliative day care, and to identify ways in which service outcomes could be evaluated and measured. In-depth observations at five palliative day care centres were undertaken across one health region. This provided a better understanding of the models, outcomes and processes of palliative day care in five different environments. Centres represented the spectrum of medical and social care models and findings were analysed using an organisational systems approach. The findings showed that, despite the lack of a national strategic approach to developing the service, the centres all provided a core set of services which were broadly similar. However, differences in philosophy, ownership, and organisation affected how the services were provided and may have an impact on the costs of the service. The study has provided a more in-depth understanding of palliative day care services in order to design an effective research strategy for evaluating a service which crosses the boundaries of health and social care. PMID:11560704
Douglas, Hannah-Rose; Higginson, Irene J.; Myers, Kathryn; Normand, Charles
The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Palliative Care recommend screening all patients for palliative care (PC) needs and to call a PC consult when referral criteria are met. The goal of this pilot project was to evaluate the feasibility of implementing the screening and referral components of the NCCN Guidelines for Palliative Care in patients admitted to the Gastrointestinal Oncology Service (GIOS) at a comprehensive cancer center (CCC). Floor nurses performed the initial screening of all patients admitted to the 2 teams-Team A and Team B-of the GIOS on one floor of Memorial Hospital for 3 months. In addition, only the patients admitted to Team A were evaluated according to the referral criteria, triggering a PC consult if results were positive. Nurses were surveyed regarding satisfaction with and the acceptability of screening. During the study period, 229 (90%) total admissions were screened, with 169 (73%) having positive results. Of the Team A admissions, 72 (64%) met the referral criteria. More consults occurred for patients in Team A (47 vs 15; P=.001). In 30% of the referral criteria-triggered consults, the PC needs were manageable by the primary team. Nurses reported screening to be easy and quick (<5 minutes per patient) but only somewhat helpful. Being unfamiliar with many patients and families, floor nurses often felt unable to screen them accurately for some issues. In conclusion, screening was feasible, increasing access to PC, but accuracy and usefulness are concerns. With a consult indicated in 64% patients, yet with 30% being manageable by the primary team, the current criteria may be too sensitive for the inpatient environment of a CCC. More evaluation is needed before widespread implementation can be recommended. PMID:24029124
Glare, Paul; Plakovic, Kathy; Schloms, Anna; Egan, Barbara; Epstein, Andrew S; Kelsen, David; Saltz, Leonard
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.
Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
Palliative care is in the early stages of development in Lebanon. The National Committee for Pain Control and Palliative Care (NCPCPC) was established under the Ministry of Public Health to work towards the development of palliative care. This paper summarizes the recommendations of the Subcommittee on Practice of the NCPCPC regarding hospital standards and provider competencies in palliative care. The authors propose actions that should be taken to implement these recommendations to help move palliative care forward in the country. PMID:24428073
Osman, Hibah; Abboud, Miguel; El Zein, Lama; Ghusn, Husam; Hanna, Janane; Kanazi, Ghassan
The learning experiences of student nurses undertaking clinical placement are reported widely, however little is known about the learning experiences of health professionals undertaking continuing professional development (CPD) in a clinical setting, especially in palliative care. The aim of this study, which was conducted as part of the national evaluation of a professional development program involving clinical attachments with palliative care services (The Program of Experience in the Palliative Approach [PEPA]), was to explore factors influencing the learning experiences of participants over time. Thirteen semi-structured, one-to-one telephone interviews were conducted with five participants throughout their PEPA experience. The analysis was informed by the traditions of adult, social and psychological learning theories and relevant literature. The participants' learning was enhanced by engaging interactively with host site staff and patients, and by the validation of their personal and professional life experiences together with the reciprocation of their knowledge with host site staff. Self-directed learning strategies maximised the participants' learning outcomes. Inclusion in team activities aided the participants to feel accepted within the host site. Personal interactions with host site staff and patients shaped this social/cultural environment of the host site. Optimal learning was promoted when participants were actively engaged, felt accepted and supported by, and experienced positive interpersonal interactions with, the host site staff. PMID:20850915
Connell, Shirley E; Yates, Patsy; Barrett, Linda
Nausea and vomiting in patients with advanced disease are debilitating symptoms that reduce the quality of life for patients, their families and carers. These symptoms are common in patients with both malignant and non-malignant disease. Palliative care intervention has been shown to improve them significantly, thereby improving patient experience of end-of-life care. This article discusses systematic and thorough assessment of patients to identify possible causes, and how these can be corrected where possible. Simple measures to manage symptoms can be effective in improving nausea and vomiting without the need for medication, and these should be considered in the first instance. We give also explain the pathophysiology of nausea, including the neurotransmitters involved, to help guide appropriate prescribing. PMID:24303613
Kelly, Brendan; Ward, Kate
Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. Settings and Design: This was a systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs. Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
Kumar, Senthil P
Purpose. To analyze pattern of care and survival after palliative radiotherapy (RT) in patients managed exclusively by regular oncology staff or a multidisciplinary palliative care team (MPCT) in addition. Methods. Retrospective analysis of 522 RT courses. Comparison of Two Groups: MPCT versus none. Results. We analyzed 140 RT courses (27%) with MPCT care and 382 without it. The following statistically significant differences were observed: 33% of female patients had MPCT care versus only 23% of male patients and 37% of patients <65 years had MPCT care versus only 22% of older patients. MPCT patients were more likely to have poor performance status and liver metastases. In the MPCT group steroid and opioid use was significantly more common. Dose-fractionation regimens were similar. Median survival was significantly shorter in the MPCT group, 3.9 versus 6.9 months. In multivariate analysis, MPCT care was not associated with survival. Adjusted for confounders, MPCT care reduced the likelihood of incomplete RT by 33%, P > 0.05. Conclusions. Patterns of referral and care differed, for example, regarding age and medication use. It seems possible that MPCT care reduces likelihood of incomplete RT. Therefore, the impact of MPCT care on symptom control should be investigated and objective referral criteria should be developed.
Dalhaug, Astrid; Pawinski, Adam; Aandahl, Gro; Haukland, Ellinor; Engljahringer, Kirsten
Objectives There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care.
Davies, Nathan; Maio, Laura; van Riet Paap, Jasper; Mariani, Elena; Jaspers, Birgit; Sommerbakk, Ragni; Grammatico, Daniela; Manthorpe, Jill; Ahmedzai, Sam; Vernooij-Dassen, Myrra; Iliffe, Steve
OBJECTIVES To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN Telephone and Web-based surveys. SETTING U.S. hospice and PC programs from the National Hospice and Palliative Care Organization’s program list. PARTICIPANTS Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care. CONCLUSION Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.
Torke, Alexia M.; Holtz, Laura R.; Hui, Siu; Castelluccio, Peter; Connor, Stephen; Eaton, Matthew A.; Sachs, Greg A.
Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs.
Dementia is a progressive, life-limiting illness. People with the condition who move into a care home deserve palliative care. This article discusses an interprofessional pilot workshop for direct care providers held in a care home in British Columbia, Canada. The workshop aimed to incorporate a palliative approach into dementia care for residents. Workshop development, teaching strategies, evaluation and outcomes are shared. The four-hour workshop was structured to promote critical reflection and challenge participants to consider that people with dementia and their families need palliative care much earlier than during the last days of life. Commitment to change statements gathered as part of the workshop indicated that participation increased knowledge, skill and confidence to incorporate a palliative approach into care for people with advanced dementia and their families. PMID:23581223
Roberts, Della; Gaspard, Gina
Objective. To illustrate distinctions and intersections of palliative care (PC) and end-of-life (EOL) services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences) and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses.
Powers, Bethel Ann; Norton, Sally A.; Schmitt, Madeline H.; Quill, Timothy E.; Metzger, Maureen
Objective: Palliative care requires nurses to be knowledgeable about different aspects of the care that they provide for dying patients. This study, therefore, was conducted to examine oncology and intensive care nurses' knowledge about palliative care in Southeast Iran. Method: Using the Palliative Care Quiz for Nursing (PCQN), 140 oncology and intensive care unit (ICU) nurses' knowledge about palliative care in three hospitals supervised by Kerman University of Medical Sciences was assessed. Results: In PCQN, the mean score was 7.59 (SD: 2.28). The most correct answers were in the category of management of pain and other symptoms (46.07%). The lowest correct answers were in the category of psychosocial and spiritual care (19.3%). Significance of results: These findings suggest that nurses' knowledge about palliative care can be improved by establishing specific palliative care units to focus on end-of-life care. This establishment requires incorporation of an end-of-life nursing education curriculum into undergraduate nursing studies. PMID:23905678
Iranmanesh, Sedigheh; Razban, Farideh; Tirgari, Batool; Zahra, Ghazanfari
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The aim of hospice palliative education care is to train nurses in hospice philosophy, terminal care skills, nursing care competencies, and professional reliability. Student nurses, staff nurses, and advanced practice nurses must be taught through a proper sequence, from novice to expert. Working together with patients and their families, nurses can educate and care for the physical, social and spiritual needs of terminally ill patients. Currently, problems faced in hospice palliative care education include: 1. The lack of a systematic plan focusing on hospice palliative care and terminal care in nursing schools; 2. The absence of comfort care, communications, ethics, and other relevant issues in extant education and training; 3. The limited number of institutes that currently provide in-service training; 4. The shortage of teachers proficient in both hospice care knowledge and practice; and 5. The current overdependence on traditional nursing education models, which hinders student nurse originality and delays staff nurse growth. Faced with the present issues, self-reflection, localization, and multiple teaching strategies should be the critical developmental directions of hospice palliative education. In order to improve terminal care quality, it is also important to integrate practice, education, and research in order to train more hospice palliative nurses. PMID:19221995
Lai, Wei-Shu; Ying, Wan-Ping; Chao, Co-Shi Chantal
Even though palliative care of dementia and care at home are key NHS priorities, services that set out specifically to support palliative care of dementia at home are virtually non-existent. We studied a novel service that has supported many people with advanced dementia at home through till death. Key factors for success include the right equipment, expertise around relevant medication,
Adrian Treloar; Monica Crugel; Dimitrios Adamis
Palliative care has appropriately been receiving increased attention in recent years. From the surgeon’s standpoint, therapy is considered palliative when resection of all known tumor sites is no longer possible or advisable. Since a cure, as commonly defined, is not possible, the goal of treatment and eventually the success of therapy becomes judged by the control of symptoms and alleviation
Matthew R. Dixon; Michael J. Stamos
Enteral feeding is indicated in patients unable to ingest sufficient nutrients but whose gastrointestinal function is adequate for digestion and absorption. Indications in palliative care include patients with radical esophageal surgery, upper gastrointestinal tract obstruction, anorexia, and dysphagia. As the oral route is the preferred method of palliative drug delivery, the enteral feeding tube can become an important tool for
Peter J Gilbar; Dip Hosp Clin Pharm Pract
Background Knowledge about the quality of end-of-life care in the elderly patient in Europe is fragmented. The European Union Geriatric\\u000a Medicine Society (EUGMS) Geriatric Palliative Medicine (GPM) Interest Group set as one of its goals to better characterize\\u000a geriatric palliative care in Europe.\\u000a \\u000a \\u000a \\u000a \\u000a Objective The goal of the current study was to map the existing palliative care structures for geriatric patients, the
R. Piers; S. Pautex; V. Curale; M. Pfisterer; M.-C. Van Nes; L. Rexach; M. Ribbe; N. Van Den Noortgate
To evaluate the effectiveness of palliative day care in improving pain, symptom control, and quality of life (QOL), 120 consecutive new referrals to five specialist palliative day care centers were recruited into a prospective comparative study. Fifty-three comparison patients were identified as those patients receiving usual palliative care services (home care, inpatient care), but did not attend day care. Patients were assessed at 3 interviews (baseline, 6-8 weeks, and 12-15 weeks) using measures of health-related quality of life: McGill Quality of Life Questionnaire (MQOL) and Palliative Care Outcome Scale (POS). There were two main analyses: 1) patient demographic data were analyzed using chi-square (chi(2)), and 2) QOL data were compared, based on distribution of scores, using the Mann-Whitney test (MQOL and POS), and Wilcoxon Signed Rank for within group differences (POS data only); P < 0.05 was taken as significant. The patients were representative of those attending palliative day care in the UK. At baseline, the day care group were (non-significantly) worse than the comparison group in the MQOL support domain (P = 0.065). The comparison group had marginally more severe pain at baseline (P = 0.053) and more severe symptoms at second assessment (P = 0.025). Both patient groups maintained overall health-related quality of life during the three months of the study. Palliative day care was not found to improve overall health-related quality of life. The limitations of the QOL measures in identifying the effects (patient outcomes) of palliative day care and the differences between the two patient groups (age, employment, unequal sample sizes) were limitations of the study and indicate the need for further research in this area. PMID:12614955
Goodwin, Danielle M; Higginson, Irene J; Myers, Kathy; Douglas, Hannah-Rose; Normand, Charles E
The transfer to a palliative care unit requires the acceptance of the patient and their family. Resistance to the transfer can arise and both the patient and their family have to relinquish certain things. PMID:24754129
Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team. PMID:24918885
Queiroz, Ana Carolina de Castro Mendonça; Mota, Dálete Delalibera Corrêa de Faria; Bachion, Maria Marcia; Ferreira, Ana Cássia Mendes
Lung cancer patients face poor survival and experience co-occurring chronic physical and psychological symptoms. These symptoms can result in significant burden, impaired physical and social function and poor quality of life. This paper provides a review of evidence based interventions that support best practice supportive and palliative care for patients with lung cancer. Specifically, interventions to manage dyspnoea, one of the most common symptoms experienced by this group, are discussed to illustrate the emerging evidence base in the field. The evidence base for the pharmacological management of dyspnoea report systemic opioids have the best available evidence to support their use. In particular, the evidence strongly supports systemic morphine preferably initiated and continued as a once daily sustained release preparation. Evidence supporting the use of a range of other adjunctive non-pharmacological interventions in managing the symptom is also emerging. Interventions to improve breathing efficiency that have been reported to be effective include pursed lip breathing, diaphragmatic breathing, positioning and pacing techniques. Psychosocial interventions seeking to reduce anxiety and distress can also improve the management of breathlessness although further studies are needed. In addition, evidence reviews have concluded that case management approaches and nurse led follow-up programs are effective in reducing breathlessness and psychological distress, providing a useful model for supporting implementation of evidence based symptom management strategies. Optimal outcomes from supportive and palliative care interventions thus require a multi-level approach, involving interventions at the patient, health professional and health service level.
Schofield, Penelope; Zhao, Isabella; Currow, David
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.
Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
In all the major medical centers throughout the Middle East, there is a functioning pediatric hematology oncology department. In almost all countries, opioids such as morphine, oxycodone, and fentanyl are available. Pediatric palliative care services are still in their infancy and await further recognition and development. Unfortunately, there are still countries in the Middle East where children with cancer are diagnosed when the disease is already at stage III or IV, when the only option left is palliation. To decrease the incidence of late presentation, more effort is needed concerning public awareness, and concomitantly, an urgent need to develop hospital-based and community-based palliative and supportive care services. The initial step in this direction would involve more training of health care providers: Pediatricians, Pediatric Oncologists, Oncology Nurses, and Social Workers with updated pharmacological and nonpharmacological modalities of treatment. PMID:22357142
Silbermann, Michael; Al-Hadad, Salma; Ashraf, Shamvil; Hessissen, Laila; Madani, Abdellah; Noun, Peter; Khayat, Claudia; Al-Rimawi, Hala; Kebudi, Rejin; Yaniv, Isaac
Emergency medical service (EMS) is frequently called to care for a seriously ill patient with a life-threatening or life-limiting illness. The seriously ill include both the acutely injured patients (for example in mass casualty events) and those who suffer from advanced stages of a chronic disease (for example severe malignant pain). EMS therefore plays an important role in delivering realistic, appropriate, and timely care that is consistent with the patient's wishes and in treating distressing symptoms in those who are seriously ill. The purpose of this article is to; 1) review four case scenarios that relate to palliative care and may be commonly encountered in the out-of-hospital setting and 2) provide a road map by suggesting four things to do to start an EMS-palliative care initiative in order to optimize out-of-hospital care of the seriously ill and increase preparedness of EMS providers in these difficult situations. PMID:23968313
Lamba, Sangeeta; Schmidt, Terri A; Chan, Garrett K; Todd, Knox H; Grudzen, Corita R; Weissman, David E; Quest, Tammie E
Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects. This critique aims to appraise the need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research.
This paper provides a discussion of some of the issues surrounding the provision of palliative care for Alzheimer's sufferers and their families during the final stages of the disease. Five nurses working in dementia care institutions in Australia were invited to tell their story about the experience of caring for people in a twilight zone, where the sufferer is suspended
Katrina Breaden; Irene Coulson
Background While the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs) by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service. Methods The study was undertaken (February March 2009-June 2010) in three phases. Development (Phase 1) involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3) of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs. Results The pharmacist screened most patients (88.4%, 373/422) referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52), and a variety of DRPs (113) were detected at this point, the most common being "patient requests drug information" (25%, 28/113) and "condition not adequately treated" (22%, 25/113). The pharmacist made 120 recommendations in relation to her interventions. Fifty percent of online survey respondents (10/20) had interacted 10 or more times with the pharmacist for advice. All felt that the pharmacist's role was helpful, improving their knowledge of the different medications used in palliative care. The six team members who participated in the focus group indicated that there were several benefits of the pharmacist's contributions towards medication screening and review. Conclusions The inclusion of a pharmacist in a community palliative care team lead to an increase in the medication-related knowledge and skills of its members, improved patients' medication management, and minimised related errors. The model of care created can potentially be duplicated by other palliative care services, although its cost-effectiveness was unable to be accurately tested within the study.
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.
Background Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures. Methods A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire. Results Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs. Conclusions Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care.
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
Javier, Noel S C; Montagnini, Marcos L
Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.
Hudson, Peter; Quinn, Karen; O'Hanlon, Brendan; Aranda, Sanchia
How to design and implement palliative care public health programmes: foundation measures. An operational paper by the WHO Collaborating Centre for Public Health Palliative Care Programmes at the Catalan Institute of Oncology.
This paper summarises the recommendations of the WHO Collaborating Centre for Palliative Care Public Health Programmes with respect to design and implementation of palliative care national or regional public health palliative care programmes in their initial phases. We describe the elements of a programme (leadership and aims; needs and context assessment; definition of the target patients; general measures in conventional services; specialist services in different settings; sectorised networks; education and training; availability and accessibility of opioids and essential drugs; legislation; standards; budget; valuation and improvement of quality; and evaluation of results and indicators) and the specific recommendations to implement the first steps of each component. Palliative care planning needs to be systematic, inserted in all levels of the healthcare system and adapted to the cultural and organisational status of the system. Coverage for all types of patients in need, together with equity and quality, are the main aims of programmes. PMID:24644323
Gómez-Batiste, Xavier; Stjernsward, Jan; Espinosa, Jose; Martínez-Muñoz, Marisa; Trelis, Jordi; Constante, Carles
Background Children’s palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. Methods The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007. Results 1590 diagnoses from children’s hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions. Conclusion The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care.
Palliative care aims to improve quality of life by early identification, impeccable assessment, and treatment of symptoms while meeting other needs of patients with advanced and progressive disease. It comprises disease-specific and symptom-guided interventions, with emphasis on preparing patients and their relatives for foreseeable, highly distressing clinical problems. Use of inappropriate mechanisms and algorithms in standard emergency treatment might be avoidable for the sake of patient-centred inpatient and outpatient palliative care during the last phase of life. This Review reflects a clinical attitude in palliative care that differs from oncological emergency management. We give examples of typical clinical crises at the end of life and discuss treatment to aid care before, during, and after such crises. PMID:19012857
Nauck, Friedmann; Alt-Epping, Bernd
...Enter Into Provider Agreements for Extended Care Services AGENCY: Department of Veterans...provider agreements to obtain extended care services from non-VA providers. In addition...rulemaking proposes to include home health care, palliative care, and...
Palliative care started in Hong Kong in 1982. It gradually established an increasingly important role in cancer care. Hong Kong is fortunate because analgesic drugs and expertise from various disciplines and specialties in pain management are readily available. A holistic approach to pain management has been adopted; various dimensions of pain are assessed and managed, and outcomes evaluated. Despite efforts in public education, patient-related barriers to pain management still exist, and it is important that misconceptions of patients be corrected. To promote the quality of palliative care and pain management, efforts have been made to provide training of healthcare professionals, and on formation of professional societies for palliative care doctors and nurses. In Hong Kong, palliative medicine achieved medical specialty status in 1998, with a curriculum and a structured training program designed for doctors interested in this field. Efforts are underway to further improve palliative care and pain management in Hong Kong through the formation of consultative teams in general hospitals, enhanced liaison with nursing homes, and possibly by redefining the role of traditional Chinese medicine in pain management. PMID:15022952
Sham, Mau Kwong Michael
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.
Brueckner, Torben; Schumacher, Martin; Schneider, Nils
Background The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and non-malignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. Methods Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. Results The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n?=?185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p?.05) and psychological burden (OR 2.88; p?.05), being female was a predictor of psychological burden (OR 2.00; p?.05). Conclusion The paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden.
... Families Take the Quiz Step 2: Meet the Palliative Care Team The palliative care team will spend a lot of time with ... are some suggestions: What can I expect from palliative care? Where will my care be provided (e.g., ...
Patients with advanced gynecologic malignancies have a multitude of symptoms; pain, nausea, and vomiting, constipation, anorexia, diarrhea, dyspnea, as well as symptoms resulting from intestinal obstruction, hypercalcemia, ascites, and\\/or ureteral obstruction. Pain is best addressed through a multimodal approach. The optimum palliative management of end-stage malignant intestinal obstruction remains controversial, with no clear guidelines governing the choice of surgical versus
Youssef Rezk; Patrick F. Timmins; Howard S. Smith
We review the literature on family conflict in palliative care. The prevalence and common sources of conflict are discussed, including historical issues of tension, differing coping styles, the division of labour, and the presence of acute or chronic mental illness within the family. Assessment and intervention strategies used in Family Focused Grief Therapy (FFGT), a family-centred preventive intervention that begins during palliative care and continues during bereavement, are presented, with special consideration given to research on treatment decision-making, cultural issues, special-needs populations, and the management of crises within the family. We conclude with a discussion of challenges that frequently impede conflict resolution and with suggestions for addressing these difficulties in the palliative care setting.
Lichtenthal, Wendy G.; Kissane, David W.
Depression is a significant symptom for 25% of patients admitted to a palliative care unit, but many of these symptoms are not identified and therefore not treated. Reasons for failure to diagnose depression are misconceptions regarding low mood as being a normal part of a terminal illness and also the patients' reluctance to disclose their thoughts and feelings. Medical and nursing staff working within palliative care may also find difficulty in distinguishing between what could be called appropriate sadness and a treatable depressive illness. In an effort to improve the detection of depression, many professionals are using rating scales or tools in order to improve the diagnosis and treatment. This review discusses the complex issues of diagnosis of depression and highlights why certain tools may not be so useful or applicable in the palliative care population. PMID:11827265
In the clinical practice of palliative medicine, recommended communication models fail to approximate the truth of suffering associated with an impending death. I provide evidence from patients' stories and empiric research alike to support this observation. Rather than attributing this deficiency to inadequate training or communication skills, I examine the epistemological premises of the biomedical language governing the patient-physician communication. I demonstrate that the contemporary biomedicine faces a fundamental aporetic occlusion in attempting to examine death. This review asserts that the occlusion defines, rather than simply complicating, palliative care. Given the defining place of aporia in the care for the dying, I suggest that this finding shape the clinicians' responses to the needs of patients in clinical care and in designing palliative research. Lastly, I briefly signal that a genuinely apophatic voice construing the occlusion as a mystery rather than an aporia may be superior to the present communication and empathy models. PMID:16464768
Okon, Tomasz R
Increasing ethnic or cultural diversity in the population served by health-care services requires improved competence and updated provision. Both individual staff and institutions need to reflect on and prepare to meet new challenges. Three key elements-reflective self-awareness, knowledge of others, and skills in managing difference-must be developed. Recognition of diversity and a database of appropriate information are essential for both workers and management of organisations. Above all, some preparedness for continual change and learning is essential. This article provides some suggestions and examples to assist with this. PMID:24514110
McGee, Paula; Johnson, Mark R D
Palliative care services for patients with life-limiting conditions enhance their quality of life. Most palliative care services, however, are located in hospitals with limited transitional care for patients who live in distant locations. The long-term goal of this program of research is to use existing technology for virtual visits to provide transitional care for patients initially hospitalized in an urban setting by a nurse practitioner located closer to patients' homes in distant, rural settings. The purpose of this proof-of-concept study was to determine the resources needed to use the system (efficiency) and the quality of the audio and visual components (effectiveness) to conduct virtual visits between a clinician at an academic center and community-dwelling adults living in rural locations. Guided by the Technology Acceptance Model, a mixed-methods field design was used. Because of the burden of testing technology with patients with life-limiting conditions, the sample included eight healthy adults. Participant satisfaction and perceptions of the ease of using the technology were also measured. Virtual visits were conducted using a 3G-enabled Apple iPad, cellular phone data service, and a Web-based video conference service. Participants and clinicians perceived the technology as easy to use. Observations revealed the importance of the visual cues provided by the technology to enhance communication, engagement, and satisfaction. Findings from this study will inform a subsequent study of technology-enhanced transitional care with palliative care patients. PMID:24814998
Holland, Diane E; Vanderboom, Catherine E; Ingram, Cory J; Dose, Ann Marie; Borkenhagen, Lynn S; Skadahl, Phyllis; Pacyna, Joel E; Austin, Christine M; Bowles, Kathryn H
Abstract Background: Prognostication is an important element of palliative care consultations. Research has shown that estimated survivals offered by clinicians are often inaccurate; however, few of these studies have focused on the documentation and prognostic accuracy of palliative care providers. Objective: Our aim was to determine whether palliative care clinicians document specific estimates of survival in the electronic medical record and whether these survival estimates are accurate. Methods: We retrospectively analyzed 400 consecutive, new palliative care consults at an urban, academic medical center from October 1, 2009 to December 31, 2010. Descriptive statistics were used to summarize patient demographics, median patient survival, documented estimated survival, agreement between estimated and actual survival, and agreement differences among disease groups. Results: The inpatient consult note template was utilized by the clinicians in 94.2% of the patients analyzed, and 69.4% of the patients analyzed had a specific survival estimate documented. Of the patients with specific survival estimates documented, 42.6% died in the time frame estimated. Weighted kappa coefficients and Kaplan survival estimators showed fair to moderate agreement between actual survival and estimated survival offered by palliative care clinicians. Survival groups with the shortest prognosis had the most accurate estimates of prognosis. Cancer had the least agreement between estimated and actual survival among disease types. Overestimation of survival was the most common prognostic error. Use of a template resulted in significantly greater documentation of a specific estimated survival. Conclusions: The prognostic accuracy of palliative care physicians in this study was similar to physician accuracy in other studies. Trends toward overestimation were also similar to those seen in previous research. Use of a template in the electronic medical record (EMR) increases documentation of estimated prognosis. PMID:24720384
Zibelman, Matthew; Xiang, Qun; Muchka, Sandra; Nickoloff, Sarah; Marks, Sean
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.
Glare, Paul; Miller, Jeanna; Nikolova, Tanya; Tickoo, Roma
\\u000a Interventions in oncology are targeted toward three possible goals: cure, life extension, or palliation. In curative treatment,\\u000a disease eradication is the primary target. Treatment decisions are largely based on data gathered from a number of objective\\u000a tests, e.g., laboratory and radiographic procedures. Primary outcome measures include disease-free survival time and tumor\\u000a response. While there is usually a high degree of
Marianne J. Brady; David Cella
Background: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of de- ceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medi- cal Center, Palo Alto, Calif. Methods: Sixty-eight
Nancy Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey Cohen
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…
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
...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...
Like any other speciality, palliative care needs a scientific foundation on which to base its practice. Research in palliative care is particularly difficult because of the characteristics of the patient population under study (e.g. advanced disease, poor performance status and limited prognosis). The aim of this paper was to highlight the challenges of recruitment into clinical trials in palliative care.
J Ling; E Rees; J Hardy
Chronic heart failure (HF) is a growing public health concern in Western nations. Incidence of HF increases with age, and demographics in the United States support a growing HF population. Annually, more than 100,000 people are admitted to hospitals because of HF. Patients with chronic HF experience a highly morbid and life-limiting illness while suffering from substantial physical and psychosocial burdens. What is the state of the science regarding the use of palliative care for community-dwelling adult patients with HF? A review of the scientific literature was conducted using the key words "palliative care" and "heart failure" in several electronic databases (CINAHL, Medline, Proquest) from October 15 to November 15, 2011. Eleven of the 16 articles found indicated that palliative care is underused by HF patients. There is a large unmet care need for adults with chronic HF and their family caregivers. Home healthcare professionals develop and maintain relationships with community-dwelling patients with chronic HF over the course of their HF illness trajectory. Home healthcare professionals are in a unique position to identify HF patients who may benefit from palliative care programs delivered across care settings in the community. By developing ongoing relationships with patients and their family caregivers, we are able to focus on the complete care needs of this patient population and assist them with advanced care planning, psychological and social issues, and symptom management. We can also improve communication among care providers and patients/families to identify goals of care along the trajectory of HF illness. PMID:23238621
Pastor, Diane K; Moore, Geraldine
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…
Logue, Barbara J.
This update is devoted to discussion of optimal sup- portive and palliative care of patients with pancreatic cancer. Approximately 33,000 new cases of pancreatic cancer are predicted for the U.S. in 2002. Because diag- nosis and intervention occur late in the course of this disease, the vast majority of patients already have metastatic disease at the time of diagnosis. These
FRANCOIS G. EL KAMAR; MICHAEL L. GROSSBARD; PETER S. KOZUCH
INTRODUCTION: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. METHODS: The national register of the consultations of the PCC teams was
A. Kuin; L. Deliens; L. van Zuylen; A. M. Courtens; M. J. F. J. Vernooij-Dassen; B. van der Linden; G. van der Wal
Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…
Boss, Renee D.
A postgraduate course on palliative nursing includes four class sessions and four peer review meetings in which students discuss case studies and assignments. The course is intended to prepare nurses for the bureaucratic, biomedical, social-therapeutic, and informal roles of terminal care. (SK)
Adriaansen, Marian J. M.; Frederiks, Carla M. A.
Background People living in rural and remote locations are disadvantaged in accessing palliative care. This can be attributed to several factors including the role diversity and the low numbers of patients with specific conditions, as well as the difficulties rural health practitioners have in accessing opportunities for professional education. A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address this problem. Method The educational content of the video conferences was developed from participant responses to an educational needs assessment. Following cycles of four consecutive video conferences, 101 participants completed evaluative on-line surveys. The quantitative data were analysed using frequencies and analysis of variance tests with post-hoc analyses where appropriate, and an accessibility and remoteness index was used to classify their practice location. Results All participants found the content useful regardless of their remoteness from the tertiary centre, their years of experience caring for palliative care patients or the number of patients cared for each year. However, change in confidence to provide palliative care as a result of attending the video conferences was significant across all disciplines, regardless of location. Doctors, medical students and allied health professionals indicated the greatest change in confidence. Conclusions The provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas. However, more attention should be directed to the diverse educational needs of allied health professionals.
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
Davies, Nathan; Maio, Laura; Vedavanam, Krish; Manthorpe, Jill; Vernooij-Dassen, Myrra; Iliffe, Steve
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
McDonald, Aileen; Burjan, Elene; Martin, Sue
Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating\\u000a value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and\\u000a performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly\\u000a competitive environment. Mounting expectations by patients,
Arif H. Kamal; David C. Currow; Christine Ritchie; Janet Bull; Jane L. Wheeler; Amy P. Abernethy
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.
Context Palliation in patient care is under-utilized in part because many patients have insufficient knowledge about this management option. Information technology can improve awareness by providing access to numerous sources of trustworthy information. Evidence Acquisition To estimate what a patient interested in palliation might find online, online resources were searched in July 2010, using terms relevant to palliation. PubMed was searched for publications relevant to discussed topics. Evidence Synthesis Search engines returned vast numbers of hits, and identifying trustworthy sites was difficult. Products judged as trustworthy were classified as information, decision tool, or extended interaction tool. Sites with useful educational material were relatively plentiful; decision guides and interactive tools were much rarer. Available consumer informatics did not address well some terminal illnesses, and some subpopulations such as children, nor was there sufficient attention to literacy levels or principles of instructional design. Online or published information about usage numbers, effectiveness, and cost/benefit considerations was scant. Many sectors, including commercial, government, healthcare, research, and wellness/advocacy groups, have created consumer informatics for palliation. Conclusions Online information about palliation is available, although identifying trustworthy sources can be problematic. General information sites are relatively plentiful, but more tools for decision making, and interaction would increase value of web resources. More attention to literacy levels, instructional principles, and needs of special populations would improve products. Research to measure usage of such tools, ability to influence behavior, and cost/benefit issues is needed.
Corn, Milton; Gustafson, David H.; Harris, Linda M.; Kutner, Jean S.; McFarren, Ann E.; Shad, Aziza T.
The work of palliative day care extends the philosophy and practice of palliative care to patients in the community. It supports the needs of patients who have a diminished ability to fulfil their family and societal roles. The extent to which these aims reflect current practice, however, has not been fully assessed, particularly in Australia. There is also a lack of research on patients' experiences of palliative day care. The key aim of this study was, therefore, to explore patients' experiences of palliative day care in a Western Australian context. Eight patients (two males and six females) with ages ranging from 44 to 82 years were interviewed. Four broad themes emerged from the data, related to patients' experiences: being bounded physically; temporally; and socially; and the role of palliative day care in supporting patients. This study highlighted the potential for palliative day care to provide a therapeutic community space. Implications of these findings for palliative day care are discussed. PMID:18414335
Fisher, Colleen; O'Connor, Moira; Abel, Kaye
Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline. PMID:21811364
Background The need for palliative care in sub-Saharan Africa is staggering: this region shoulders over 67% of the global burden of HIV/AIDS and cancer. However, provisions for these essential services remain limited and poorly integrated with national health systems in most nations. Moreover, the evidence base for palliative care in the region remains scarce. This study chronicles the development and evaluation of DataPall, an open-source electronic medical records system that can be used to track patients, manage data, and generate reports for palliative care providers in these settings. DataPall was developed using design criteria encompassing both functional and technical objectives articulated by hospital leaders and palliative care staff at a leading palliative care center in Malawi. The database can be used with computers that run Windows XP SP 2 or newer, and does not require an internet connection for use. Subsequent to its development and implementation in two hospitals, DataPall was tested among both trained and untrained hospital staff populations on the basis of its usability with comparison to existing paper records systems as well as on the speed at which users could perform basic database functions. Additionally, all participants evaluated this program on a standard system usability scale. Results In a study of health professionals in a Malawian hospital, DataPall enabled palliative care providers to find patients’ appointments, on average, in less than half the time required to locate the same record in current paper records. Moreover, participants generated customizable reports documenting patient records and comprehensive reports on providers’ activities with little training necessary. Participants affirmed this ease of use on the system usability scale. Conclusions DataPall is a simple, effective electronic medical records system that can assist in developing an evidence base of clinical data for palliative care in low resource settings. The system is available at no cost, is specifically designed to chronicle care in the region, and is catered to meet the technical needs and user specifications of such facilities.
Palliative care involves an approach in the field of care for terminal patients and their families that seeks to assure them better quality of life by establishing good communication. The scope of this study was to verify how nurses use communication in the field of palliative care when assisting patients in the terminal phase. This is exploratory research of a qualitative nature in which 28 nurses working in wards of a hospital in the city of Joao Pessoa in the State of Paraíba participated in the period from August to October 2012. A form was used for data collection that was then analyzed using the content analysis technique. Three categories emerged from the analysis of the material: "palliative care and communication - interpersonal relationship between the nurse and the terminal patient"; "communication in palliative care as a strategy for strengthening the bond between the nurse and the terminal patient"; and "the importance of communication between the nurse and the family of the terminal patient under palliative care." The conclusion reached was that communication is seen to be an effective element of care for the patient in the terminal phase and it is extremely important for the promotion of palliative care. PMID:23989558
de Andrade, Cristiani Garrido; da Costa, Solange Fátima Geraldo; Lopes, Maria Emília Limeira
Objectives The objectives of this study were to determine the prevalence of pain, describe its treatment, and determine factors associated with any pain in older residents assigned to a hospice specialty unit bed or receiving services from a hospice/palliative care/end-of-life special program in US nursing homes. Design Cross-sectional study of data from the 2004 National Nursing Home Survey. Setting The setting was 1174 US nursing homes. Participants Participants were 303 sampled patients, 65 years or older, representing 33,413 individuals receiving hospice/palliative care. Measurements Facility staff was asked if, in the past 7 days, the resident had reported or shown evidence of pain. Medication use data were derived from medication administration records. Information about demographics and health status was derived from Minimum Data Set records. Results Cancer was the primary diagnosis in only 11.4% of residents. Overall 36.6% had any pain in the previous week. Among those with any pain, 86.4% received some analgesic; specifically, 65.5% received opioids, whereas 31.7% received acetaminophen. Those with any pain compared with those without pain had shorter lengths of stay in hospice/palliative care (mean 123 days versus 161 days, P < .01), were more likely to be incontinent of bowel (76.2%, versus 60.3%, P < 0.01) and bladder (84.5% versus 71.8%, P = 0.01). Conclusions Pain symptoms were present in more than one third of older nursing home hospice/palliative care residents despite the use of opioids in two thirds of those who had reported or shown evidence of any pain. Additional future studies are needed to improve the management of pain in older residents receiving hospice/palliative care in US nursing homes.
Hanlon, Joseph T.; Perera, Subashan; Sevick, Mary Ann; Rodriguez, Keri L.; Jaffe, Emily J.
The authors describe the utilisation of a quality assessment tool for palliative care administered at home. The questionnaire entitled Support Team Assessment Schedule (STAS) was translated from English for this study. It was then utilised comparatively with different quality of life evaluation instruments. Only the results of the STAS are described here. The approach allows for the unresolved problems in the care to come to the surface week after week. The STAS comprises nine items pertaining to the patient and his/her family, and seven items concerning the services provided. The study exhibits the results of 107 evaluations completed from 50 patients stricken with cancer or AIDS in an advanced phase. The availability of this auto clinical audit tool, employable at home or in a hospital, constitutes an essential initial step in the field of French-speaking clinical evaluation of palliative care. PMID:11826845
Lagabrielle, D; Guyot, F; Jasso, G; Couturier, P; Poussin, G; Frossard, M; Szabo, P; Franco, A
Objective To evaluate the impact on place of death of a hospital at home service for palliative care. Design Pragmatic randomised controlled trial. Setting Former Cambridge health district. Participants 229 patients referred to the hospital at home service; 43 randomised to control group (standard care), 186 randomised to hospital at home. Intervention Hospital at home versus standard care. Main outcome measures Place of death. Results Twenty five (58%) control patients died at home compared with 124 (67%) patients allocated to hospital at home. This difference was not significant; intention to treat analysis did not show that hospital at home increased the number of deaths at home. Seventy three patients randomised to hospital at home were not admitted to the service. Patients admitted to hospital at home were significantly more likely to die at home (88/113; 78%) than control patients. It is not possible to determine whether this was due to hospital at home itself or other characteristics of the patients admitted to the service. The study attained less statistical power than initially planned. Conclusion In a locality with good provision of standard community care we could not show that hospital at home allowed more patients to die at home, although neither does the study refute this. Problems relating to recruitment, attrition, and the vulnerability of the patient group make randomised controlled trials in palliative care difficult. While these difficulties have to be recognised they are not insurmountable with the appropriate resourcing and setting. Key messagesTerminally ill patients allocated to hospital at home were no more likely to die at home than patients receiving standard careAlthough the subsample of patients actually admitted to hospital at home did show a significant increase in likelihood of dying at home, whether this was due to the service itself or the characteristics of patients admitted to hospital at home could not be determinedThe need to balance ideal research design against the realities of evaluation of palliative care had the effect that the trial achieved less statistical power than originally plannedParticular problems were that many patients failed to receive the allocated intervention because of the unpredictable nature of terminal illness, inclusion of other service input alongside hospital at home, and the wide range of standard care availableThe trial illustrated problems associated with randomised controlled trials in palliative care, none of which are insurmountable but which require careful consideration and resourcing before future trials are planned
Grande, Gunn E; Todd, Chris J; Barclay, Stephen I G; Farquhar, Morag C
With current healthcare reform and calls for improving care quality and safety, there is renewed emphasis on high-value care. Moreover, given the significant healthcare resource utilization for patients with chronically progressive illnesses or for patients at the end of life, innovative and efficient care delivery models are urgently needed. We propose here the concept of a sentinel hospitalization, defined as a transitional point in the patient's disease course that heralds a need to reassess prognosis, patient understanding, treatment options and intensities, and goals of care. Hospitalists are well positioned to recognize a patient's sentinel hospitalization and use it as an opportunity for active integration of palliative care that provides high-quality and cost-saving care through its patient- and family-oriented approach, its interdisciplinary nature, and its focus on symptom control and care coordination. PMID:24474682
Lin, Richard J; Adelman, Ronald D; Diamond, Randi R; Evans, Arthur T
Patients with chronic obstructive pulmonary disease experience a substantial symptom burden, high levels of psychosocial need and significant mortality. This epidemiological study reveals that the majority of patients are cared for in the public hospital system (64%) and generally die in hospital (72%) with a number of identifiable predictors of 6-month mortality. Our results suggest that palliative care services need to be redirected from a community-based admission focus to a model that is responsive to emergency and acute care hospital systems. PMID:24020345
Philip, J; Lowe, A; Gold, M; Brand, C; Miller, B; Douglass, J; Sundararajan, V
Corneal donation occurs infrequently within palliative care, even though the majority of the public say they are in favour of donating organs and tissue after death. One of the roles of the health professional is to provide patients with the necessary information to make choices, and this should include the option of donating their corneas should they so wish. This literature review explores how the subject can be raised in a systematic manner within palliative care. It looks at the potential benefits and dangers of involving the patient in such discussions, and the effects on the families. Practical issues, such as when to raise the issue, are also considered. Finally, the review discusses the implications for nursing practice and research. PMID:16215527
The University of Notre Dame Australia’s Sydney Campus has joined with The University of New South Wales (UNSW) to help establish a multidisciplinary academic centre in palliative care.\\u000aThis recently launched facility, the Cunningham Centre, will also be supported by St Vincents and Mater Health Sydney (SV&MHS) and the NSW Cancer Institute.\\u000aIt will be based at the Sacred Heart
Intrathecal analgesia is an interventional form of pain relief with definite advantages and multiple complications. Administration of intrathecal analgesia needs a good resource setting and expertise. Early complications of intrathecal analgesia can be very distressing and managing these complications will need a high degree of knowledge, technical expertise and level of experience. Pain control alone cannot be the marker of quality in palliative care. A holistic approach may need to be employed that is more person and family oriented.
Salins, Naveen S; Crawford, Gregory B
The Research Network of the European Association for Palliative Care (EAPC) performed a survey of 3030 cancer patients from 143 palliative care centres in 21 European countries. The survey addressed pain intensity and the use of non-opioid analgesics, adjuvant analgesics and opioids. Patients were treated with analgesics corresponding to the WHO pain ladder step I (n \\/855), step II (n
Pål Klepstad; Stein Kaasa; Nathan Cherny; Geoffrey Hanks; Franco de Conno
An Expert Working Group was convened under the auspices of the Steering Committee of the Research Network of the European Association of Palliative Care to review the status of the use of pain measurement tools (PMTs) in palliative care research conducted in a multilingual- multicenter setting. Based on a literature review and on the experts' opinion, the present work recommends
Augusto Caraceni; Nathan Cherny; Robin Fainsinger
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.
Muller, Jakob; Frick, Eckhard; Petersen, Yvonne; Mauer, Christine
The culture of pediatric intensive care units (PICUs) is focused on curative or life-prolonging treatments for seriously ill children. We present empirically-based approaches to family-centered palliative care that can be applied in PICUs. Palliative care in these settings is framed by larger issues related to the context of care in PICUs, the stressors experienced by families, and challenges to palliative care philosophy within this environment. Innovations from research on family-centered communication practices in adult ICU settings provide a framework for development of palliative care in PICUs and suggest avenues for social work support of critically ill children and their families.
DOORENBOS, ARDITH; LINDHORST, TARYN; STARKS, HELENE; AISENBERG, EUGENE; CURTIS, J. RANDALL; HAYS, ROSS
Seventy percent of people in the United States who have dementia die in the nursing home. This article addresses the following topics on palliative care for patients with dementia in long-term care: (1) transitions of care, (2) infections, other comorbidities, and decisions on hospitalization, (3) prognostication, (4) the evidence for and against tube feeding, (5) discussing goals of care with families/surrogate decision makers, (6) types of palliative care programs, (7) pain assessment and management, and (8) optimizing function and quality of life for residents with advanced dementia. PMID:21641503
Fulton, Ana Tuya; Rhodes-Kropf, Jennifer; Corcoran, Amy M; Chau, Diane; Castillo, Elizabeth Herskovits
Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges. PMID:24188227
Swetz, Keith M; Mansel, J Keith
Background Delivering palliative care to elderly, dying patients is a present and future challenge. In Germany, this has been underlined\\u000a by a 2009 legislation implementing palliative care as compulsory in the medical curriculum. While the number of elderly patients\\u000a is increasing in many western countries multimorbidity, dementia and frailty complicate care. Teaching palliative care of\\u000a the elderly to an interprofessional group
Johannes M Just; Christian Schulz; Maren Bongartz; Martin W Schnell
In order to explore possible differences in the scope of end-of-life decisions and attitudes toward advance directives (AD) in palliative care, we conducted a survey of 159 patients in palliative care institutions and 93 health-care professionals experienced in palliative care in the United States, Germany, and Japan. Giving an AD in this clinical setting was considered important by patients and
Raymond Voltz; Akira Akabayashi; Carol Reese; Gen Ohi; Hans-Martin Sass
Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.
Kumar, Senthil P
We report a systematic appraisal of definitions and approaches to needs assessment in palliative care. Electronic databases were searched, and relevant individuals and organizations were contacted to identify needs assessments in palliative care. Over 200 articles were identified giving general information on needs assessment, and 77 articles comprised palliative care-related needs assessment reports. The reports originated from Africa (37), Australia (1), Europe (including former central/eastern European states) (35), USA (1), Latin America (5), and Asia (7). Two underpinning definitions of need were identified, that of Maslow from the field of psychology, and that of Bradshaw from sociology. However, in conducting needs assessments, these definitions were operationalized, and here the National Health Service Executive definition of need as "the ability to benefit from health care" is helpful. We identified three main categories of approach to needs assessment--epidemiological, corporate, and comparative--that can be used in combination. Careful consideration must be paid to any needs assessment data to ensure that the assessment is implemented. PMID:17482037
Higginson, Irene J; Hart, Sam; Koffman, Jonathan; Selman, Lucy; Harding, Richard
... serious or life-threatening illness is difficult for pediatric patients and their families. However, there is special care ... state http://www.getpalliativecare.org National Cancer Institute Pediatric Supportive Care for Children ... comprehensive, and caring Palliative care works along ...
End-of-life programs that provide an option for patients to die at home are available in most U.S. communities. However, Alaska Natives living in remote Alaska villages often die alone in hospitals and nursing homes hundreds of miles away from home. The Bristol Bay Area Health Corporation (BBAHC), a tribal organization, is the sole provider of comprehensive primary care services to 34 Alaska Native villages located within a 46,000 square mile area in southwest Alaska. The closest tertiary care hospital is 329 air miles away in Anchorage. Because of the high cost of, and difficulties encountered in trying to deliver end-of-life care services to remote communities, a village-focused, culturally sensitive, volunteer and primary care program combined with a regionally based physician and home health nurse to deliver multi-disciplinary palliative care was developed. The Helping Hands Program blends cultural practices with contemporary palliative care medicine to allow Alaska Natives and others living in remote communities to be cared for at home through the end of life. Since the program was implemented in 1999, the percentage of home deaths for selected causes has changed from 33% in 1997 to 77% in 2001. The Anchorage-based Alaska Native Tribal Health Consortium (ANTHC) and the Alaska Native Medical Center (ANMC) have recognized the importance and success of the BBAHC program and are investigating expanding the program to other parts of Alaska. Centralizing the program in Anchorage will allow staff trained in palliative care to travel to regional Alaska Native hospitals to help train health care professionals. PMID:14509499
DeCourtney, Christine A; Jones, Kristina; Merriman, Melanie P; Heavener, Nina; Branch, P Kay
Assessment in palliative care is very important. The assessment is a structured and goal oriented procedure. Both is important - structure and goal - because of the patient's vulnerability and in respect to his life-threatening illness. Assessment instruments play a limited role in the process of assessment because many values in palliative care are individual, subjective and their comparison to each other and their measure are limited. It isn't scientific to measure values which aren't measureable. Values become less measureable when complexity grows. Complexity can't be simplified because simplification destroys complexity. It makes sense to ask oneself which outcome an assessment instrument will measure before we use it. PMID:22334196
Büche, Daniel J
Substantial shortfalls in the quality of palliative care of the elderly can be attributed to 5 fundamental flaws in the way end-of-life care is currently delivered. First, palliative care is viewed as a terminal event rather than a longitudinal process, resulting in a reactive approach and unnecessary preterminal distress in elderly patients suffering from chronic, slowly progressive illnesses. Second, palliative care is defined in terms of a false dichotomy between symptomatic and disease-focused treatment, which distracts attention from the proper focus of healing illness. Third, the decision about whether the focus of care should be palliative is not negotiated among patients, family members, and providers. Fourth, patient autonomy in making treatment choices is accorded undue prominence relative to more salient patient choices, such as coming to terms with their place in the trajectory of chronic illness. Fifth, palliative care is a parallel system rather than an integrated primary care process. A new theoretical framework--the TLC model--addresses these flaws in the provision of palliative care for elderly persons. In this model, optimal palliative care is envisioned as timely and team oriented, longitudinal, collaborative and comprehensive. The model is informed by the chronic illness care, shared decision making, and comprehensive geriatric assessment research literature, as well as previous palliative care research. Preliminary results of an intervention for elderly assisted living residents based on the TLC model support its promise as a framework for optimizing palliative care of elders. PMID:15053284
Jerant, Anthony F; Azari, Rahman S; Nesbitt, Thomas S; Meyers, Frederick J
Substantial shortfalls in the quality of palliative care of the elderly can be attributed to 5 fundamental flaws in the way end-of-life care is currently delivered. First, palliative care is viewed as a terminal event rather than a longitudinal process, resulting in a reactive approach and unnecessary preterminal distress in elderly patients suffering from chronic, slowly progressive illnesses. Second, palliative care is defined in terms of a false dichotomy between symptomatic and disease-focused treatment, which distracts attention from the proper focus of healing illness. Third, the decision about whether the focus of care should be palliative is not negotiated among patients, family members, and providers. Fourth, patient autonomy in making treatment choices is accorded undue prominence relative to more salient patient choices, such as coming to terms with their place in the trajectory of chronic illness. Fifth, palliative care is a parallel system rather than an integrated primary care process. A new theoretical framework—the TLC model—addresses these flaws in the provision of palliative care for elderly persons. In this model, optimal palliative care is envisioned as timely and team oriented, longitudinal, collaborative and comprehensive. The model is informed by the chronic illness care, shared decision making, and comprehensive geriatric assessment research literature, as well as previous palliative care research. Preliminary results of an intervention for elderly assisted living residents based on the TLC model support its promise as a framework for optimizing palliative care of elders.
Jerant, Anthony F.; Azari, Rahman S.; Nesbitt, Thomas S.; Meyers, Frederick J.
Notes that International Work Group on Death, Dying, and Bereavement recognizes wide variation of attitudes, beliefs, and behaviors pertaining to childhood death, dying, and bereavement. Statement identifies set of assumptions which can serve as guidelines, across cultures, in care of children with terminal illness and their families. (Author/NB)
Death Studies, 1993
The U.S. Department of Veterans Affairs (VA) has been a leader in program development and service delivery in the areas of geriatrics, hospice and palliative care for decades. Zelda Foster, MSW, serving as the Chief of Social Work Services at the Brooklyn VA Hospital for almost 20 years, was a force in the early days of the palliative care and hospice movement in the United States, publishing a seminal article in 1965, and contributing through educational initiatives, program development, information dissemination and mentorship of countless social workers. With an early recognition of the demographic imperative of aging veterans, the VA established a number of innovative programs which have been widely replicated outside of the VA. Zelda Foster was a central figure in the evolution of these programs and a strong and effective advocate for the inclusion of social workers. She deserves much credit for the fact that social workers are now centrally involved in an array of leadership activities in palliative and end-of-life care both within and outside of VA. PMID:18072661
Daratsos, Louisa; Howe, Judith L
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
Puchalski, Christina M; Dorff, Rabbi Elliot; Hendi, Imam Yahya
A strong and often polarized debate has taken place during recent years concerning the consequences of dehydration in the terminally ill patient. When a patient has a severely restricted oral intake or is found to be dehydrated, the decision to administer fluids should be individualized and made on the basis of a careful assessment that considers problems related to dehydration, potential risks and benefits of fluid replacement, and patients' and families' wishes. This review discusses the assessment of hydration status in the terminal cancer patient and the options for fluid administration in the cases where evaluation of the patients' condition has led to this indication. These include different modes of hypodermoclysis, intravenous hydration, use of the nasogastric route, and proctoclysis. Arguments for and against rehydration have been previously addressed by other authors and fall outside the scope of this review. PMID:9686490
Steiner, N; Bruera, E
As valuable members of the oncology team, acute care nurse practitioners (ACNPs) are in the perfect position to deliver high-quality palliative care. They are instrumental in coordinating the palliative care needs of their patients. Through proper training, ACNPs are able to assess, plan, implement, and evaluate palliative care interventions. Along with oncology-certified nurses, ACNPs help their patients navigate the complexities of the healthcare system. The skills that the American College of Surgeons Commission on Cancer identified in its standard for palliative care are skills possessed by ACNPs, making them the perfect fit to carry out these standards in healthcare institutions around the United States. PMID:24480663
In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care. PMID:22771130
Background. Development of a pediatric palliative care program was preceded by a needs assess- ment that included a staff survey and family interviews regarding improving pediatric palliative care. Methods. Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were
Nancy A. Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey J. Cohen
Background Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. Methods Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed) to GPs (n = 524) and through a special interest group to palliative care nurses (n = 122) in both rural and urban areas. Results Questionnaires were returned by 114 GPs (22%) and 52 nurses (43%). The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC) Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources. Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. Conclusion While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good communication between members of multidisciplinary teams, which include the GP, may enhance after hours service provision for patients receiving palliative care at home. The role of locums in after PC is an area for further research
Tan, Heather M; O'Connor, Margaret M; Miles, Gail; Klein, Britt; Schattner, Peter
Specialist palliative care (SPC) has expanded recently in Ireland to incorporate diseases other than cancer, including dementia. Two care areas that pose specific challenges for SPC nurses when caring for people with advanced dementia are pain and nutrition/hydration. Assessment and management of pain for a patient who has advanced dementia differs greatly from that for a typical palliative care patient. Similarly, nutrition and hydration pose extraordinary ethical and practical dilemmas not encountered when caring for a patient without dementia. This paper reports a literature review which revealed that although evidence-based information related to each of these areas is available, it tends to be written from the perspective of health professionals with an interest in dementia rather than from the perspective of the SPC nurse. SPC nurses require evidence-based palliative care research to guide their practice, but such research appears to be limited for patients with advanced dementia. Knowledge from specialists in both dementia care and palliative care needs to be combined if we are to provide these patients with the best possible end-of-life care. Further research is required and evidenced-based guidelines need to be formulated. PMID:22240740
Barber, Jean; Murphy, Kathleen
Competency development among acute and critical care nurses has focused primarily on the provision of life-sustaining care and less on the care of patients who fail to respond to life-prolonging treatments. Examining nurses' beliefs, perceptions, and experiences with patients' palliative care needs may improve continuing education programs, practice resources, educational curricula, and professional nursing practice. Survey methodology was used to conduct this pilot study. Forty-nine nurses completed a 33-item survey instrument in 2012. Respondents consisted of nurses attending a critical care continuing education event and graduate nursing students in an acute care nurse practitioner program. Statistical tests were used to examine differences in perceived importance of core competencies in palliative care. Findings from this study demonstrate variation in palliative care knowledge and perceived relative importance of core competencies needed in palliative care practice. This study provides preliminary data about knowledge differences among different nursing groups and a foundation for further study. J Contin Educ Nurs. 2014;45(6):265-277. PMID:24877548
White, Kenneth R; Roczen, Marisa L; Coyne, Patrick J; Wiencek, Clareen
In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick's observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at the price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients' life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever ("total pain" or critical suffering). Only in the fourth circle are people hedonists. PMID:19449128
Barilan, Y Michael
The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement. PMID:21811377
Kulkarni, Priya Darshini
The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use of a communication tool provides documentation for conversations, treatment plans, and specific desires related to care. This paper describes communication theory, portrays the use of this theory to develop a communication tool, and illustrates the use of this tool by multidisciplinary members of a healthcare team to provide pediatric palliative care.
Hubble, Rosemary; Trowbridge, Kelly; Hubbard, Claudia; Ahsens, Leslie; Ward-Smith, Peggy
... in a variety of ways. Together with your primary health care provider, your palliative care team combines vigorous pain and ... include: • Will I have to give up my primary health care provider? • What do I say if there is resistance ...
Abstract Background: The Carolinas Center for Medical Excellence launched the PEACE project in 2006, under contract with the Centers for Medicare & Medicaid Services (CMS), to identify, develop, and pilot test quality measures for hospice and palliative care programs. Objectives: The project collected pilot data to test the usability and feasibility of potential quality measures and data collection processes for hospice and palliative care programs. Settings/subjects: Twenty-two hospices participating in a national Quality Improvement Collaborative (QIC) submitted data from 367 chart reviews for pain care and 45 chart reviews for nausea care. Fourteen additional hospices completed a one-time data submission of 126 chart reviews on 60 potential patient-level quality measures across eight domains of care and an organizational assessment evaluating structure and processes of care. Design: Usability was assessed by examining the range, variability and size of the populations targeted by each quality measure. Feasibility was assessed during the second pilot study by surveying data abstractors about the abstraction process and examining the rates of missing data. The impact of data collection processes was assessed by comparing results obtained using different processes. Results: Measures shown to be both usable and feasible included: screening for physical symptoms on admission and documentation of treatment preferences. Methods of data collection and measure construction appear to influence observed rates of quality of care. Conclusions: We successfully identified quality measures with potential for use in hospices and palliative care programs. Future research is needed to understand whether these measures are sensitive to quality improvement interventions. PMID:24921162
Schenck, Anna P; Rokoske, Franziska S; Durham, Danielle; Cagle, John G; Hanson, Laura C
In response to a 2005 solicitation from the U.S. National Institutes of Health, 16 investigators received funding to test interventions that would reduce the barriers that prevent cancer patients from receiving adequate and appropriate symptom management therapies. Since the awards have been issued, the investigators have met two times and have identified a number of challenges to implementing their respective studies. A survey was conducted that focused on their experiences with hiring and retaining study personnel, gaining Institutional Review Board approval, incurring unexpected costs, challenges to accruing participants, and a listing of standard measures used in the study. The survey was completed online by the Principal Investigator for each project in late 2006 and the initial results were confirmed one year later by resending the initial survey and by a follow-up telephone call. All but one Principal Investigator completed the survey. Obtaining Institutional Review Board approval, hiring and recruiting research personnel, establishing subcontracts, and accruing research subjects were the primary challenges experienced by the investigators. This palliative care solicitation achieved more than its original intent of stimulating research in overcoming barriers to delivering cancer symptom management, palliative care and end-of-life care. From a survey on the challenges and issues that emerged from their projects, grantees were able to identify specific hurdles and their unique solutions that may help other investigators as they plan their program of research. PMID:18715749
O'Mara, Ann M; St Germain, Diane; Ferrell, Betty; Bornemann, Tami
This article describes the research strategy for the development of a computerized assessment tool as part of a European Union (EU)-funded project, the European Palliative Care Research Collaborative (EPCRC). The EPCRC is funded through the Sixth Framework Program of the EU with major objectives to develop a computer-based assessment and classification tool for pain, depression, and cachexia. A systematic approach will be applied for the tool development with emphasis on multicultural and multilanguage challenges across Europe. The EPCRC is based on a long lasting collaboration within the European Association for Palliative Care Research Network. The ongoing change in society towards greatly increased use of communication as well as information transfer via digital systems will rapidly change the health care system. Therefore, patient-centered outcome assessment tools applicable for both clinic and research should be developed. Report of symptoms via digital media provides a start for face-to-face communication, treatment decisions, and assessment of treatment effects. The increased use of electronic media for exchange of information may facilitate the development and use of electronic assessment tools and decision-making systems in oncology. In the future, patients may find that a combination of a face-to-face interview plus a transfer of information of subjective symptoms by electronic means will optimize treatment. PMID:18688054
Kaasa, Stein; Loge, Jon Håvard; Fayers, Peter; Caraceni, Augusto; Strasser, Florian; Hjermstad, Marianne Jensen; Higginson, Irene; Radbruch, Lukas; Haugen, Dagny Faksvåg
Accurate assessment and management of children's symptoms at the end of life is a vital part of the children's nurse role. Most children experience pain at this stage and opioids are the drug of choice in those requiring a palliative approach to care. Opioids are, however, not without side effects; the most common is constipation. This can cause additional stress and anxiety for children and their parents at what is already a difficult time. A number of assessment tools are available to assist nurses and other members of the care team to work with children and parents in identifying risk factors for constipation and its severity. Conventional management of opioid-induced constipation consists of stool softening or peristalsis stimulating laxatives, and often this is effective; however, laxatives also have side effects which can be distressing. This article looks at novel approaches to managing opioid-induced constipation that are beginning to come to the fore, although there is limited reference to their use in children's palliative care. PMID:22132558
Stewart, Grace; McNeilly, Patricia
Purpose: External beam radiotherapy (RT) is commonly indicated for the palliation of symptomatic bone metastases, but there is evidence of underutilization of this treatment modality in palliative care for cancer populations. This study was conducted to investigate factors that influenced the use of palliative RT services at a regional comprehensive cancer center. Methods and Materials: A cohort of patients with radiographically confirmed bone metastases and first-time users of palliative RT between 2003 and 2005 was retrospectively reviewed from the time of initial diagnosis of bone metastases to death or last follow-up. Type of radiation treatment service provider used (rapid access or routine access) and patient-, tumor-, and treatment-related factors were analyzed for their influences on the number of treatment courses given over the duration of disease. Results: A total of 887 patients received 1,354 courses of palliative RT for bone metastases at a median interval of 4.0 months between courses. Thirty-three percent of patients required more than one RT course. Increased age and travel distance reduced the likelihood and number of treatment courses, while service through a rapid access clinic was independently associated with an increase in subsequent use of palliative RT. Conclusions: A rapid access service model for palliative RT facilitated access to RT. Travel distance and other factors remained substantial barriers to use of palliative RT services. The pattern of practice suggests an unmet need for symptom control in patients with bone metastases.
Wu, Jackson S.Y., E-mail: email@example.com [Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Kerba, Marc [Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Wong, Rebecca K.S. [Department of Radiation Oncology, Radiation Medicine Program, Princess Margaret Hospital, University of Toronto, Toronto, Ontario (Canada); Mckimmon, Erin [Radiation Treatment Program Management, Tom Baker Cancer Centre, Calgary, Alberta (Canada); Eigl, Bernhard [Department of Oncology, Division of Medical Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Hagen, Neil A. [Department of Oncology, Division of Palliative Medicine, Tom Baker Cancer Centre, and Department of Clinical Neurosciences and Medicine, University of Calgary, Calgary (Canada)
Background Little is known about how GPs determine whether and when patients need palliative care. Little research has been done regarding the assumption underpinning Lynn and Adamson’s model that palliative care may start early in the course of the disease. This study was conducted to explore how GPs identify a need for palliative care in patients. Methods A qualitative interview study was performed among 20 GPs in the Netherlands. Results GPs reported that a combination of several signals, often subtle and not explicit, made them identify a need for palliative care: signals from patients (increasing care dependency and not recuperating after intercurrent diseases) and signals from relatives or reports from medical specialists. GPs reported differences in how they identified a need for palliative care in cancer patients versus those with other diseases. In cancer patients, the need for palliative care was often relatively clear because of a relatively strict demarcation between the curative and palliative phase. However, in patients with e.g. COPD or in the very old, GPs' awareness of palliative care needs often arises gradually, relatively late in the disease trajectory. GPs consider the diagnosis of a life-threatening illness as a key point in the disease trajectory. However, this does not automatically mean that a patient needs palliative care at that point. Conclusions GPs recognize a need for palliative care on the basis of various signals. They do not support the idea underlying Lynn and Adamson’s model that palliative care always starts early in the course of the disease.
BackgroundAmyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life.ObjectiveTo conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS.ResultsDespite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care
Peter Bede; David Oliver; James Stodart; Leonard van den Berg; Zachary Simmons; Doiminic Ó Brannagáin; Gian Domenico Borasio; Orla Hardiman
Background Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study. Methods Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets). Results The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit. Conclusions The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.
Palliative care improves the quality of life of patients and their families facing problems associated with life-threatening illnesses by promoting the prevention and relief of suffering. Palliative care in Japan has been developed mainly for cancer patients. At the National Center for Geriatrics and Gerontology, an end-of-life care team (EOLCT) has been developed to promote palliative care for patients without cancer. In the first 6 months of its operation, 109 requests were received by the team, 40% of which were for patients without cancer or related disease, including dementia, frailty due to advanced age, chronic respiratory failure, chronic heart failure, and intractable neurologic diseases. The main purpose of the EOLCT is to alleviate suffering. The relevant activities of the team include the use of opioids, providing family care, and giving support in decision-making (advance care planning) regarding withholding; enforcement; and withdrawal of mechanical ventilators, gastric feeding tubes, and artificial alimentation. The EOLCT is also involved in ongoing discussions of ethical problems. The team is actively engaged in the activities of the Japanese Geriatric Society and contributes to the development of decision-making guidelines for end-of-life by the Ministry of Health, Labour and Welfare. The EOLCT can be helpful in promoting palliative care for patients with diseases other than cancer. The team offers support during times of difficulty and decision-making. PMID:24047661
Nishikawa, Mitsunori; Yokoe, Yuriko; Kubokawa, Naomi; Hukuda, Koji; Hattori, Hideyuki; Hong, Young-Jae; Miura, Hisayuki; Shibasaki, Masataka; Endo, Hidetoshi; Takeda, Jun; Odate, Mitsuru; Senda, Kazuyoshi; Nakashima, Kazumitsu
Palliative cancer treatment is a system of care that seeks to relieve suffering in patients with progressive cancer. Given the intractable symptoms with which certain malignancies manifest, palliative care offers a practical approach towards improving the patient’s quality of life. However, there are an array of ethical issues associated with this treatment strategy such as particular methods of pain relief, a reliable assessment of suffering, autonomy, and multi-specialist care. While these principles are important to increase and improve the network of palliative care, the resource-poor Indian environments present numerous barriers for these principles to be practically applied. As the infrastructure of comprehensive cancer centers develop, paralleled with an increase in training of palliative care professionals, significant improvements need to be made in order to elevate the status of palliative cancer care in India.
Mudigonda, Tejaswi; Mudigonda, Parvathi
Palliative day care (PDC) provides individualized care to meet patients' needs and preferences and has posed problems for economic evaluation. Current methods are limited in their ability to capture relevant outcomes. The choice experiment elicits preferences for multiple aspects of care rather than a single outcome. A choice experiment was undertaken at four centers in England. A random effects probit model was used. Interaction terms relating to patient and service characteristics were explored. Seventy-nine patients participated. All characteristics of PDC except bathing and hairdressing were significant (P < 0.001). Access to specialist therapies was three times as important as medical support and twice as important as staying all day. Interaction terms were not significant, except for age and preference for specialist therapies, although the sample may not have been adequate to detect differences. Choice experiments provided useful insights by quantifying preferences for services, providing an alternative to cost-effectiveness analysis. PMID:15904746
Douglas, Hannah-Rose; Normand, Charles E; Higginson, Irene J; Goodwin, Danielle M
Patients attended by palliative care teams: are they always comparable populations? To answer this question we have compared the basic epidemiological characteristics of patients attended by home palliative care teams (HPCT) in two autonomous regions of Spain. We carried out a coordinated analytical, observational and prospective study in two Spanish autonomous regions: Aragon and Catalonia. Data were kept during each home care visit according to patients' needs. Inclusion criteria were: advanced cancer, over 18 years old and first contact with a HPCT. The recruitment period was 6 months. Variables included were: Survival time (days), age, sex, primary disease and extension, place of residence. Functional and cognitive state, and co-morbidity. 10 signs/symptoms: asthenia, anorexia, cachexia, dysphagia, xerostomy, dyspnoea, oedemas, level of consciousness, presence of delirium, presence of pressure ulcers and some treatment data. Others variables considered were: responsible team, origin, destination when discharge, date and place of death, number of visits made and duration of monitoring. We developed a comparison between groups by Chi-squared test or the non-parametric Mann-Whitney U test and a survival analysis by Kaplan-Meier curves and the logrank test to determine differences between factors. The SPSS version 15.0 software package was used. 698 patients were included, 56.2% from Aragon and 43.8% from Catalonia. 60.3% were males, without differences between the regions. Characteristics relative to age, sex, place of residence and extension of oncological diseases were similar for both groups. We found significant differences between the two populations relative to survival time, co-morbidity, functional state, presence and intensity of a number of symptoms and the treatments, patient monitoring and the their destination after discharge. We can conclude that palliative care teams cover different profiles of patients with regard to their co-morbidity, functional, cognitive and symptomatic states. It must be pointed that the organization of palliative care services and their experience appears to condition the profile of patients they attend. There is a need of consensus on the basic descriptors for palliative care patients in order to ensure that results will be comparable. PMID:23646293
Nabal, Maria; Barcons, Miquel; Moreno, Roberto; Busquets, Xavier; Trujillano, Javier J; Requena, Antonio
Background: In the past decade, the palliative care approach has been used in the care of frail older people living with debilitating chronic conditions, including dementia. Aim: To describe health professionals' experiences of assessing the symptoms of people with dementia using a cancer-patient-oriented symptom-assessment tool from a palliative care context. Method: This was a qualitative study that used semi-structured interviews (n=13) with clinical staff in three nursing homes prior to and following the implementation of the Minimal Documentation system for Palliative care (MIDOS) tool for assessing symptoms over a period of 6 weeks. Results: Baseline interviews showed specific concerns about symptom assessment, such as uncertainty about underlying symptoms in residents who appeared to be in distress. After the implementation of the MIDOS tool, participants reported that daily use of the tool was perceived as helpful in evaluating symptoms other than pain and improved internal communication between staff regarding clinical decision making. Conclusion: The MIDOS tool was perceived as a helpful and valuable complement to existing tools. Participants expressed some concerns regarding the subjective nature of perceiving symptoms and clinical decision making. The use of tools such as the MIDOS tool has the potential to enhance the quality of palliative care in dementia care. PMID:24763327
Krumm, Norbert; Larkin, Philip; Connolly, Michael; Rode, Peter; Elsner, Frank
An Expert Working Group was convened under the auspices of the Steering Committee of the Research Network of the European Association of Palliative Care to review the status of the use of pain measurement tools (PMTs) in palliative care research conducted in a multilingual-multicenter setting. Based on a literature review and on the experts' opinion, the present work recommends that
Augusto Caraceni; Nathan Cherny; Robin Fainsinger; Stein Kaasa; Philippe Poulain; Lukas Radbruch; Franco De Conno
Using an applied policy approach, we describe and discuss the policies and practice that influence access to palliative care and hospice to persons living in assisted living facilities (ALFs). We found that not many people, policy makers included, have a clear understanding of what palliative care is. We also found that very few regulations are in place to safeguard a
Julie C. Lima; Susan C. Miller; Renée R. Shield
Patients with advanced lung cancer who received early palliative care experienced longer median survival than those who only received palliative care near death, according to results of a randomized clinical trial published August 19, 2010, in the New England Journal of Medicine.
Inadequate physician knowledge, particularly in areas of pain assessment and use of analgesics, has been identified as a major factor contributing to poor pain management in cancer patients. In most medical schools, teaching in Palliative Care at both the undergraduate and postgraduate levels is limited or nonexistent.Baseline knowledge and changes in knowledge in areas relevant to Palliative Care were assessed
Doreen Oneschuk; Robin Fainsinger; John Hanson; Eduardo Bruera
According to the guidelines which were published by WHO in 2008, palliative care has been defined as “An approach that improves the quality of life of the patients and their families who face the problems which are associated with life-threatening illnesses, through the prevention and relief of suffering by means of an early identification, an impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual”. The intervention which is provided as a part of the palliative care has to be provided by health professionals who strictly work as a part of multidisciplinary team and have been specifically trained to an optimal level of competency in the field. The impairment of the physical function and pain are two key problem areas in palliative care, which a physiotherapist deals with. Is a physiotherapist who is trained in India, trained to work as an efficient member of the team in this field? This article deals with the following: What is palliative care and what is its importance?A multidisciplinary approach to palliative careThe scenario of palliative care in IndiaThe role of physiotherapy in palliative care.The current scenario of physiotherapy education vis a vis palliative care.
Currently, the extent of palliative care instruction varies considerably across and within the three major phases of the physician education and training process. This analysis of current educational efforts in palliative care is based on information obtained from a survey conducted of all United States medical schools, surveys conducted on United…
General Accounting Office, Washington, DC. Health, Education, and Human Services Div.
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)
Viney, Linda L.; And Others
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.
Abstract Background: Substantial agreement has been achieved on research priorities in palliative care over the past 15 years, as evidenced by consensus conferences and systematic reviews. Despite the presence of a widely endorsed research agenda, however, addressing the gaps in scientific knowledge has progressed slowly, suggesting that researchers face significant obstacles to conducting high-quality research on the most pressing topics in the field. Objective: To systematically identify barriers to improved and expanded palliative care research as reported by researchers. Design: Semistructured telephone interviews to solicit barriers to research in palliative care. Setting/Subjects: A purposive, interdisciplinary sample of 61 leading researchers in palliative care. Measurements: Interviews were transcribed and analyzed using standard qualitative methods. Results: Respondents named five barriers impeding progress: (1) funding, (2) institutional capacity, (3) researcher workforce, (4) challenges related to the topic and population (e.g., attrition, heightened human subjects protections), and (5) public and professional misunderstanding of palliative care and aversion to topics related to serious illness and end-of-life. Conclusions: Research in palliative care is being held back by significant barriers that require the attention of institutions and funders. The consensus within the interdisciplinary sample indicates that concentrated effort to address barriers related to funding and researcher workforce could facilitate progress on established research priorities. More research is needed on viable strategies for overcoming the identified barriers. PMID:24885960
Chen, Emily K; Riffin, Catherine; Reid, M Cary; Adelman, Ronald; Warmington, Marcus; Mehta, Sonal S; Pillemer, Karl
Progressive multifocal leukoencephalopathy (PML) is a rare but usually fatal demyelinating disease of the central nervous system in patients who are immunocompromised. It is characterized by rapid neurological deterioration associated with progressive white matter changes on imaging and is confirmed by isolation of the causative virus in the cerebrospinal fluid or brain tissue. Currently there are no effective treatments for PML and outcomes remain poor even after reversal of the immunocompromised state. This case series describes three patients with different underlying pathologies and varying presentations who were all diagnosed with PML and referred to a palliative care service. PMID:22740610
Cotton, Penelope Janet Helen; Le, Brian
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.
Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim
Abstract Background Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. Objective To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. Method A cross-sectional survey of nurses at a freestanding children's hospital in 2005. Results Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. Conclusions Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
Tubbs-Cooley, Heather L.; Santucci, Gina; Kang, Tammy I.; Feinstein, James A.; Hexem, Kari R.
Health care should make an attempt to understand the different religious principles that affect end-of-life decisions in patient care. With advanced illness, defining an ethical framework is essential to understanding sensitive issues. Compassionate care is crucial in all end-of-life care settings. Physician awareness is a key principle in inculcating the religious values of patients. Cultural and religious awareness on the part of the health-care team is needed to provide patients with effective end-of-life palliative and hospice care.
The St. Christopher's Hospice Palliative Care in Dementia Project, funded for 3 years by the King's Fund, aims to investigate the palliative care needs of patients with advanced dementia and their families; to clarify the role of specialist palliative care for this patient group; and to examine the usefulness of one model of working. This interim report outlines findings from
Sharon Scott; Victor Pace
Purpose In 1998, the American Society of Clinical Oncology (ASCO) published a special article regarding palliative care and companion recommendations. Herein we summarize the major accomplish- ments of ASCO regarding palliative cancer and highlight current needs and make recommenda- tions to realize the Society's vision of comprehensive cancer care by 2020. Methods ASCO convened a task force of palliative care
Frank D. Ferris; Eduardo Bruera; Nathan Cherny; Charmaine Cummings; David Currow; Deborah Dudgeon; Nora JanJan; Florian Strasser; Charles F. von Gunten; Jamie H. Von Roenn
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
Drugs are indispensable for the management of symptoms in palliative care patients, and account for a significant proportion of expenditures on a Tertiary Palliative Care Unit (TPCU). Drug expenditures for Edmonton's TPCU increased by 40% in 2002 compared to 2001. Fifty-five percent of the increase was attributable to injectable fentanyl, oral and injectable ondansetron, and total parenteral nutrition (TPN). As there was no increase in the unit cost of these drugs between 2001 and 2002, the increased expenditures reflected increased utilization. The hypothesis of this study was that the increased utilization of these drugs reflected appropriate prescribing. The objective was to compare the indications for prescribing these drugs in 2002 against evidence- and consensus-based criteria. Patients who received these drugs while admitted to the TPCU from January 1 to December 31, 2002 were identified through the pharmacy database. Evidence- and consensus-based criteria for drug utilization were developed. Prescribing indications were retrospectively compared against the criteria. Drug prescriptions were categorized as follows: (1) meeting criteria, (2) not meeting criteria, or (3) uncertain. The drugs under study were prescribed during 48 out of 234 admissions to the TPCU in 2002. Prescriptions for fentanyl met criteria in 26 of 29 cases. Indications were unsuccessful therapy with morphine, hydromorphone, and oxycodone (20), requirement for rapid titration from fentanyl patch (5), renal failure (2), and sublingual administration for breakthrough pain (1). Prescriptions for ondansetron met criteria in 19 of 21 cases. Indications were nausea refractory to metoclopramide and dexamethasone (13), and nausea related to radiotherapy or chemotherapy (6). Prescriptions for TPN met criteria for initiation in only one of five cases. However, in all cases, TPN had been started prior to admission. In cases where death was considered imminent, TPN was continued pending consultation with the patient and family regarding discontinuation. These data indicate that the increased prescribing of fentanyl and ondansetron on the TPCU satisfied evidence- and consensus-based criteria in most cases, apparently justifying the associated increase in drug expenditures. This type of analysis may be useful whenever increased drug utilization requires review. A cost effectiveness analysis would be the next step in evaluating the costs vs. the benefits. The issue of discontinuing TPN in palliative care patients requires further investigation. PMID:16716876
Llanes, Lea Renina; Fassbender, Konrad; Baracos, Vickie E; Watanabe, Sharon
Psychiatric issues are common among those with advanced illness referred to palliative care services. Psychiatric illness can cause considerable distress to both patients and their families. In order to improve end-of-life care for palliative patients, it is necessary to diagnose psychiatric conditions and to treat them appropriately. This review considers the more common issues of delirium, dementia, depression, anxiety, and
Damien McMullan; Clare White; Neil Jackson
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.
Klein, Carsten; Lang, Ute; Bukki, Johannes; Sittl, Reinhard; Ostgathe, Christoph
This paper analyzes the evolution and the definition, current use, and application of the concept of self-determination in palliative care research and practice. Undertaken as a foundation for the development of a palliative care research program, the analysis considers selected historical, bioethical, legal, clinical, and relevant medical and nursing health-care literature on adults with chronic and terminal illness. Based on a synthesis of the literature, a conceptual definition is proposed and ways of integrating the concept of self-determination into palliative care intervention research are identified. PMID:16092777
Bakitas, Marie A
Organ donation is generally accepted within the medical profession as a beneficial practice with demand continuing to exceed supply. For patients who are dying from cancer opportunities for organ donation are generally limited to eye donation. Between July 1, 2006 and 30 June 2007 over 2000 deaths occurred in nine palliative care units (PCUs) in metropolitan Sydney. Of these deaths only 50 patients became eye donors. Donors came from only four of the nine inpatient PCUs. Of these four, two provided nearly 90% of the eye donations. Only two PCUs in the Sydney metropolitan area provide significant numbers of eye donations. There are likely to be a number of factors contributing to the low rate of eye donation from PCUs and these are discussed in detail. PMID:19821700
Roach, Rebecca; Broadbent, Andrew M
Malignant pleural effusion (MPE) is a distressing condition for the patient, causing many symptoms such as shortness of breath, dry cough, an uncomfortable feeling of heaviness in the chest, and pleuritic pain. MPE reduces quality of life and functional status. It indicates that the disease is now advanced and life expectancy is generally short, with a median prognosis of 3-12 months depending on the stage of the disease and the underlying malignancy. This paper discusses the palliative treatment options for MPE, which include thoracentesis, medical pleurodesis, and indwelling pleural catheter. It is important that decisions about treatment are made within the multidisciplinary team and alongside the patient and family. Treatment goals are concerned with the relief or elimination of dyspnoea, restoration of near-normal activity and function, and avoidance of inpatient care. PMID:24273808
Arber, Anne; Clackson, Catherine; Dargan, Susan
Background:There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan.Aim:To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care.Design:Qualitative design based on semistructured interviews and content analysis.Setting/participants:Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions. RESULTS: Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service's relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services. PMID:23687213
Muta, Rieko; Sanjo, Makiko; Miyashita, Mitsunori; Wakabayashi, Rieko; Ando, Etsuko; Morita, Tatsuya; Tsuneto, Satoru; Shima, Yasuo
Troubling deficits exist in palliative care (PC) of older adults under the prevailing “terminal care”-oriented model. We previously described a PC model—TLC—that provides a blueprint for remedying these shortfalls. In this model, PC is envisioned as Timely and Team-oriented, Longitudinal, and Collaborative and Comprehensive. We present results of the Palliative Care in Assisted Living pilot, comparing two TLC model-based, facility
Anthony F. Jerant; Rahman S. Azari; Thomas S. Nesbitt; Adrienne Edwards-Goodbee; Frederick J. Meyers
High-grade malignant glioma patients face a poor prognosis, preceded by rapid functional and neurobehavioural changes, making multidisciplinary care incorporating supportive and palliative care important. This study aimed to quantify the association between symptoms,receipt of supportive and palliative care and site of death. We undertook a retrospective cohort study between 2003 and 2009 of incident malignant glioma cases who survived for at least 120 days between their first hospitalisation and their death (n = 678) in Victoria, Australia, using linked hospital, emergency department and death data. The median age of patients was 62 years, 40% were female, and the median survival was 11 months. Twenty-six percent of patients died outside of hospital, 49% in a palliative care bed/hospice setting and 25% in an acute hospital bed. Patients having 1 or more symptoms were more than five times as likely to receive palliative care. Patients who receive palliative care are 1.7 times more likely to die outside of hospital. In conclusion malignant glioma patients with a high burden of symptoms are more likely to receive palliative care and, in turn, patients who receive palliative care are more likely to die at home. PMID:24078175
Sundararajan, Vijaya; Bohensky, Megan A; Moore, Gaye; Brand, Caroline A; Lethborg, Carrie; Gold, Michelle; Murphy, Michael A; Collins, Anna; Philip, Jennifer
Background: cancer patients require palliative care. Aim: the purpose of this study was to explore the experiences of nurses, who provide palliative care for cancer patients, within the context of Iranian culture. Methods: we conducted a hermeneutic phenomenological study. Semi structured in-depth interviews with 10 nurses were audio taped and transcribed. The transcriptions were then analyzed by Van Manen’s method. Results: one of the most important themes that emerged was “human relationships”, which also contained the subthemes of “comprehensive acceptance” and “psychological support”. Conclusions: the results provide deep understanding of human relationships in palliative care of cancer patients in Iran.
Borimnejad, Leili; Mardani Hamooleh, Marjan; Seyedfatemi, Naimeh; Tahmasebi, Mamak
As jurists, doctors, and ethicists are increasingly engaged in the debate as to whether and how to legalize euthanasia as a matter of public policy, less debate takes place on what it is submitted ought naturally to come before, i.e. the affirmation of a legal right to palliative care. In Israel, the draft law The Terminally Ill Patient (2001) includes a palliative care provision. It is submitted that such provision, laudable as it is, appears within a euthanasia-oriented framework and is given too limited a scope. Hence the suggestion that palliative care be given an autonomous role, and be recognized as a positive legal right. PMID:15887623
Since the emergence of reports such as the and the , there continues to be a growing recognition of the multiple adverse effects of serious illness and chronic conditions, as well as the potential benefits of receiving palliative or end-of-life care. As modern technology expands its ability to support life, ethical dilemmas may be encountered in the provision of palliative or end-of-life care. Through integration of the precepts of palliative care and consideration of the relevant ethical principles, orthopaedic nurses may best meet their patients' comprehensive needs at an exceedingly difficult time. PMID:24845834
Petersen, Cheryl L; Breakwell, Susan; Callahan, Margaret
As members of the Association of Palliative Care CAM (complementary and alternative medicine) Task Group we set ourselves two tasks: the task of exploring different facets of holistic care relevant to the palliative care setting and then to review outcome measures that might assist in researching complex interventions such as complementary therapies. Complementary therapies often embrace holistic philosophy where mind and body are connected and the complexity of symptoms acknowledged. These holistic or complex interventions within the palliative care setting are important to research and research holistically. We therefore gathered together outcome measures in the areas of hope, spirituality, symptom control, self-concept, the therapeutic consultation and dignity which would assist in the design of clinical trials of complementary therapies in the palliative care setting. PMID:18243939
Thompson, Elizabeth Anita; Quinn, Tina; Paterson, Charlotte; Cooke, Helen; McQuigan, Deidre; Butters, Graeme
A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol
Background Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report palliative needs in a screening, will benefit from being referred to ‘early SPC’. Methods/Design DanPaCT is a clinical, multicentre, parallel-group superiority trial with balanced randomisation (1:1). The planned sample size is 300 patients. Patients are randomised to specialised palliative care (SPC) plus standard treatment versus standard treatment. Consecutive patients from oncology departments are screened for palliative needs with a questionnaire if they: a) have metastatic cancer; b) are 18 years or above; and c) have no prior contact with SPC. Patients with palliative needs (i.e. symptoms/problems exceeding a certain threshold) according to the questionnaire are eligible. The primary outcome is the change in the patients’ primary need (the most severe symptom/problem measured with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Secondary outcomes are other symptoms/problems (EORTC QLQ-C30), satisfaction with health care (FAMCARE P-16), anxiety and depression (the Hospital Anxiety and Depression scale), survival, and health care costs. Discussion Only few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based ‘early SPC’ for patients with a broad spectrum of cancer diagnosis. Trial registration Current controlled Trials NCT01348048
This small-scale 10-month study evaluated teamworking within a specialist palliative care team. The study aims were to: collect, analyse and summarize information on how team members perceive teamworking; compare team members' perceptions after a teambuilding workshop; and to evaluate the longer term effect of this training on the team. A group of practitioners from a local Marie Curie Cancer Care Centre was selected and included members from all available disciplines. A piloted questionnaire was used to obtain qualitative and quantitative input. The team as a whole scored themselves above average on almost all counts. Following the teambuilding workshop significant improvement was seen in areas such as role appreciation and communication but not all improvements were long lasting. A perception of understaffing was noted as being one of the largest negative influences on teamwork whereas the setting and maintaining of agreed team objectives and having sufficient education opportunity were positive influences. Although teambuilding sessions appear to have the potential to produce the desired benefits, they should not be initiated at a time when staff already feel anxiety over their workload. PMID:12514461
Donaghy, Kevin; Devlin, Breige
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.
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.
Abstract Background With the continuing growth of pediatric palliative care, there is an increasing need to develop effective training for health care professionals. Bereaved parents have participated in the training of health care professionals utilizing curriculum from the Initiative for Pediatric Palliative Care (IPPC), but the experience of bereaved parents as educators has not been studied. Objectives This qualitative research examined the experience of bereaved parents involved in pediatric palliative care education of health care professionals and the challenges and possible benefits for the health care professionals. Methods Nine bereaved parents and eleven health care professionals were interviewed about their experiences in a pediatric palliative care education program utilizing the IPPC curriculum. The interviews were recorded, transcribed, coded and analyzed for themes and subthemes. Results Major themes found were a sense of purpose for the parents and benefits and challenges for both parents and professionals. The experience for parents contributed to their meaning-making for both their children's lives and deaths. Parents and professionals identified mutual learning and increased mutual understanding. Some professionals noted that the presence of parents may have limited the openness of discussion of the professionals and parents acknowledged challenges of emotional management in their participation in the educational program. Both parents and professionals recognized and described challenges involved in working sensitively with patients and families without being overwhelmed by the intensity of situations where children die. Conclusion More benefits than burdens were experienced by both parents and health care professionals from the participation of bereaved parents in the palliative care trainings.
Green, Angela; Towe, Shannon; Huett, Amy
With the current shift to community care, the need for palliative care in the home involving the family physician has increased. Potential causes of crises in the home care of the dying are identified. Strategies to prevent crises are suggested that rely on a team's providing comprehensive and anticipatory care.
Howarth, G.; Willison, K. B.
Outcome measures are being increasingly used in palliative care. Palliative day care is significantly different to other specialist palliative care settings, as patients may attend for much longer periods of time. The aim of this study was to elicit patients' views on using an adapted version of the Palliative Care Outcome Scale (POS) and to determine its value in identifying their individual needs. This qualitative study involved a focus group of nine patients who had used POS weekly for a minimum of 3 months. The focus group discussion was tape recorded and transcribed verbatim. Data were analysed using an interpretive phenomenological approach. Participants found POS to be a useful communication tool, which helped them to identify their individual needs. PMID:15365487
Slater, Adrienne; Freeman, Elaine
Palliative care provides relief from distressing symptoms including pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep and many other symptoms. It can also help you deal with the side effects of the medical tre...
Objective. To identify barriers and personnel attitudes towards realization of palliative care principles in neonatological units. Study Design. An anonymous questionnaire was posted to all heads of departments and head nurses of all the 27 neonatological units in the Lodz area. Results. We received 46 (85%) questionnaires. Final analysis comprised 42 properly filled-in questionnaires (by 22 doctors and 20 nurses). In case of prenatal diagnosis of a lethal defect, 77.27% of doctors and 65% of nurses opted for informing the mother also about the possibility of pregnancy continuation and organization of palliative care after delivery. Most of respondents accepted conditions for abortion pointed by the Polish law. The most common barriers pointed out by both groups were insufficient knowledge of the personnel on palliative medicine and family preference for life sustaining treatment. Conclusions. Understanding attitudes of personnel towards palliative care and identification of barriers are a starting point for future efforts to improve the system of neonatological care.
Respondek-Liberska, Maria; Przyslo, Lukasz; Fendler, Wojciech; Mlynarski, Wojciech; Gulczynska, Ewa
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill. PMID:24488541
Jones, Barbara L; Contro, Nancy; Koch, Kendra D
This paper presents a qualitative analysis of a subsample of data from a larger investigation into general practitioner referrals to specialist palliative care services (SPCS). The aim was to identify the expectations and perceptions of patients with advanced cancer and their relatives. Twenty-nine individuals were interviewed (18 patients, 11 relatives). Qualitative analysis of the interview transcripts was undertaken using an approach based on interpretative phenomenological analysis. The results indicated that SPCS were perceived as providing psychosocial services, characterized as 'support' and 'someone to talk to'. SPCS were expected to have 'expertise in symptom control', particularly in relation to pain management. The study demonstrated that patients' and relatives' expectations of a referral to SPCS were of psychosocial support and symptom control. It is argued that the implications of this restricted view of SPCS may mean that other salient concerns are not raised by patients and relatives. PMID:10474696
Jarrett, N; Payne, S; Turner, P; Hillier, R
\\u000a In some patients with hematological malignancies and acute respiratory failure, the clinical emphasis shifts toward palliation.\\u000a In the palliative care phase, the goals of care move from cure of disease to improvement of the patient’s experience of living\\u000a and of dying, and optimization of the patient’s quality of life. Dyspnea, which frequently accompanies respiratory failure,\\u000a is particularly prevalent and distressing
Amy P. Abernethy; Jane L. Wheeler; David C. Currow
Palliative care aims at improving the patient’s quality of life. The assessment of this quality of life (QoL) is crucial for\\u000a the evaluation of palliative care outcome. Many patients require hospital admissions for symptom control during their cancer\\u000a journey and most of them die in hospitals, although they would like to stay at home until the end of their lives.
Hubert R. Jocham; Th. W. N. Dassen; G. A. M. Widdershoven; Ruud Halfens
Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available. The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care. The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support. PMID:23972474
Cleary, James; Ddungu, Henry; Distelhorst, Sandra R; Ripamonti, Carla; Rodin, Gary M; Bushnaq, Mohammad A; Clegg-Lamptey, Joe N; Connor, Stephen R; Diwani, Msemo B; Eniu, Alexandru; Harford, Joe B; Kumar, Suresh; Rajagopal, M R; Thompson, Beti; Gralow, Julie R; Anderson, Benjamin O
Synopsis The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians’ strong desire to provide compassionate, competent and sensitive care to the seriously ill child and the child’s family can be effectively translated into clinical practice through these processes. “To cure sometimes, to relieve often, to comfort always -- this is our work.” Author Unknown
Baker, Justin N; Hinds, Pamela S; Spunt, Sheri L; Barfield, Raymond C; Allen, Caitlin; Powell, Brent C; Anderson, Lisa H; Kane, Javier R
The goal of palliative care is to provide the best possible quality of life for patients and their families in the process of dying as well as before, during the course of illness. Emphasis is on the role of team approach in every aspect of patient care. The moral principles of sacredness of life and the right of personal autonomy may occasionally come in conflict. The basic principle of the respect of life prohibits killing, which has been accepted in one way or another by all societies - for the reasons of survival. Similar to this, modern morality supports the principle of respecting autonomy and self-management based on informed, conscious personality of an individual. Still, if the needs of another person appear to be more important or desirable than reaching certain individual goals, then the right of an individual regarding autonomy may be legitimately limited. Decisions on not applying or terminating certain procedures must be based on thorough discussion and consideration of the nature and expected result of treatment. If the patient is not competent, then the discussion should involve a team providing care for the patient and a representative of the patient. When the physician and the team can clearly see that unfavorable effects of treatment will outweigh therapeutic benefits, then, according to medical ethics of the respecting beneficiary, the team is not obliged to provide that form of treatment. Except for palliative care, there is no medical treatment that is always obligatory. A physician that does not accept the patient's request to be killed does not limit the patient's autonomy. Autonomy is self-management and capability of the patient to kill him/herself is not limited by the physician's refusal to do so. Even in those cases when patients for various reasons say that death will be a relief, it does not mean that the physician is obliged to terminate life. The superior obligation of physicians is to alleviate pain. If euthanasia would be legal, it would discourage those that work in the field of medical education and search for new ways to diminish pain. The progress in the development of palliative care would be stopped worldwide. Supporting the belief that killing is forbidden could increase the benefits for the society, whereas forbidding the concept of "allowing to die" despite the use of all-powerful technologies does not seem to maximize beneficial effects. In fact, if the latter be valid, then all patients at intensive care units with all the possible life sustaining facilities would have to die. Yet, members of the unit health care team would be accused of a deed considered equivalent to murder. For autonomy to be accomplished, competence is required, and that is something that varies, passing through different stages. In medical context, a person is competent when he/she is able to understand the basic information about the illness, including prognosis, if she/he is able to understand the treatment suggested, differentiate between the risk and benefit, and come to a rational decision. A partially competent person can, if he/she wants and is able to, reach joint decisions with the rest of the team. If the person is not competent and has not delegated a proxy (representative) and has not provided written instructions for the future, the health care team does not know what the patient would want if competent. Then the team handles according to the principles of doing good and no harm. The role of the "directive for the future" and proxy-decision-makers becomes problematic for the following reasons. By the time when the directives should be implemented many forms of medical treatment have been further developed, so that the illness may have become curable or treatment easier. Older and weak people that need care and feel they pose a burden could feel forced to sign directives for the future if they are legally obligatory. PMID:19382626
Given the essential role of volunteers in hospice palliative care, it would be beneficial to have a recruitment and retention tool that is reliable and valid. To address this gap, the current investigation sought to adapt and extend the Inventory of Motivations for Palliative Care Volunteerism (IMPCV) of Claxton-Oldfield, Jefferies, Fawcett, Wasylkiw, and Claxton-Oldfield.(1) The purpose of study 1 was to address methodological concerns of the IMPCV using 141 undergraduate students. After conceptually relevant items were added to the IMPCV, participants indicated the degree of influence each of the motivations would have on their, and another person's, decision to become a hospice palliative care volunteer. In both cases, 5 internally consistent subscales were identified through principal components analysis: altruism, civic responsibility, self-promotion, leisure, and personal gain. Convergent and discriminant validity were demonstrated using an established measure of empathy. In study 2, 141 hospice palliative care volunteers completed the revised and renamed Inventory of Motivations for Hospice Palliative Care Volunteerism (IMHPCV). Confirmatory factor analysis provided support for the 5-factor structure of the IMHPCV. The authors encourage other researchers to use the IMHPCV as a measurement tool in studying the motivations of hospice palliative care volunteers. PMID:20713424
Claxton-Oldfield, Stephen; Wasylkiw, Louise; Mark, Mariko; Claxton-Oldfield, Jane
Background: Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support. Aim: To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support. Design of study: Retrospective interviews. Setting: Primary care in Cambridgeshire. Method: Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support. Results: The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (?75 years), but this finding requires further investigation. Conclusion: Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home.
Grande, Gunn E; Farquhar, Morag C; Barclay, Stephen IG; Todd, Chris J
Background Palliative care in cancer aims at alleviating the suffering of patients. A previous study in patients with advanced non-small-cell lung cancer showed that adenosine 5'-triphosphate (ATP) infusions had a favourable effect on fatigue, appetite, body weight, muscle strength, functional status and quality of life. The present study was designed 1. To evaluate whether ATP has favourable effects in terminally ill cancer patients, 2. To evaluate whether ATP infusions may reduce family caregiver burden and reduce the use of professional health care services, and 3. To test the feasibility of application of ATP infusions in a home care setting. Methods/Design The study can be characterized as an open-labelled randomized controlled trial with two parallel groups. The intervention group received usual palliative care, two visits by an experienced dietician for advice, and regular ATP infusions over a period of 8 weeks. The control group received palliative care as usual and dietetic advice, but no ATP. This paper gives a description of the study design, selection of patients, interventions and outcome measures. Discussion From April 2002 through October 2006, a total of 100 patients have been randomized. Follow-up of patients will be completed in December 2006. At the time of writing, five patients are still in follow up. Of the 95 patients who have completed the study, 69 (73%) have completed four weeks of follow-up, and 53 (56%) have completed the full eight-week study period. The first results are expected in 2007.
Beijer, Sandra; van Rossum, Erik; Hupperets, Pierre S; Spreeuwenberg, Cor; van den Beuken, Marieke; Winkens, Ron A; Ars, Lisette; van den Borne, Ben E; de Graeff, Alexander; Dagnelie, Pieter C
Palliative care is still a topic under discussion in the Iranian healthcare system, and cancer patients require palliative care. Moreover, nursing ethics has an important role in caring for these patients. The purpose of this study was to identify the perception of Iranian nurses regarding ethics-based palliative care in cancer patients. This study was done with a qualitative approach and by using content analysis. In this study, 14 nurses were selected through purposive sampling, and a face-to-face semi structured interview was conducted with each of them. After data collection, all interviews were transcribed and reviewed, and categories were extracted. At first, similarities in meaning were reviewed and based on centralization arranged in sub-categories. Then, relevant sub-categories were arranged in a category after a second review. In general, original categories in the ethics-based palliative care in cancer patients encompass the following: “human dignity”, “professional truthfulness” and “altruism”. Human dignity has 3 sub-categories consisting of ‘respecting patients’, ‘paying attention to patient values’ and ‘empathizing’. Professional truthfulness has 2 sub-categories consisting of ‘truthful speech’ and ‘truthful action’. Lastly, altruism has 3 sub-categories consisting of ‘complete and multi-dimensional patient acceptance’, ‘supportive behavior’ and ‘responsibility’. Content analysis of ethics-based palliative care in cancer patients revealed the required conditions for this type of care based on the perception of nurses. The results of this study suggest that in nurses’ point of view, human dignity, professional truthfulness and altruism all have important roles in ethics-based palliative care in cancer. The findings of this study will give nurses a greater knowledge about ethics-based palliative care in cancer patients, leading to a better understanding of the ethical needs of these patients, and may ultimately help improve the nursing practice.
Hamooleh, Marjan Mardani; Borimnejad, Leili; Seyedfatemi, Naimeh; Tahmasebi, Mamak
Background: With an ageing population and changes to the UK process of commissioning health-care services, it is important that the role of the community palliative care clinical nurse specialist (CPC-CNS) is better understood. Aim: This study aimed to describe CPC-CNS activities during interactions with patients. Methods: Four CPC-CNSs were observed and audio-recorded during interactions with 34 patients. The data was assessed qualitatively using thematic analysis. Results: An enormous breadth of activities were observed, within a framework of assessment, planning, intervention, and evaluation. Cross-cutting themes were real-time decision making, leadership, ability to respond to and coordinate complex and varied situations, and communication techniques. Data saturation was not achieved. Conclusion: CPC-CNSs provide multifaceted care, requiring wide-ranging knowledge to enable them to act as liaison points in a complex health service, respond independently to the fluctuating needs of patients, and provide effective advance care planning, particularly to those with advanced disease, multi-morbidity, and frailty. PMID:24852032
Howell, Debra; Hardy, Beth; Boyd, Caroline; Ward, Chris; Roman, Eve; Johnson, Miriam
The terms palliative care, supportive care, and comfort care are used to describe individualized care that can provide a dying person the best quality of life until the end. The term “end-of-life care” is also used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition. While the concept of palliative care is not new, it has only recently been applied to the neonatal population. To the best of our knowledge, none of the neonatal intensive care units (NICUs) in Saudi Arabia have adopted a neonatal program for palliative care. We believe the main reason is lack of knowledge of such programs and the fear of being accused of being heartless and cruel by providing comfort care for dying babies. Comfort care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. In this perspective, our aim is to introduce these programs for caregivers in the NICUs in Saudi Arabia. For this purpose, we have reviewed the current recommendations in establishing neonatal palliative care programs and discussed some of the social and religious aspects pertaining to this issue.
Al-Alaiyan, Saleh; Al-Hazzani, Fahad
...care must include all services necessary for the palliation and management of the terminal illness and related conditions, including the following: (1) Interventions to manage pain and symptoms. (2) A detailed statement of the scope...
Background SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service), in Guipúzcoa (Autonomous Community of the Basque Country). In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients. The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals. The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU) results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. Method/design Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care. For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index), and of the outcomes of palliative care received (Palliative Outcome Scale). Ethical approval for the study was given by the Clinical Research Ethics Committee of Euskadi (CREC-C) on 10 Dec 2012. Discussion The results of this prospective study will assist in verifying or disproving the hypothesis that the in-home social care offered by SAIATU improves the efficiency of healthcare resource usage by these patients (quality of life, symptom control). This project represents a dramatic advance with respect to other studies conducted to date, and demonstrates how, through the provision of personnel trained to provide social care for patients in the advanced stages of illness, and through strengthening the co-ordination of such social services with existing healthcare system resources, the resulting holistic structure obtains cost savings within the health system and improves the efficiency of the system as a whole.
The aim of this paper was to provide a literature synthesis on current wound care practices for the management of chronic wounds in palliative care and end-of-life patients, focusing on the control of wound-related symptoms for comfort and improved quality of life. These wounds included pressure ulcers, venous and arterial leg ulcers, diabetic ulcers and fungating malignant wounds. Wound-related symptoms included pain, exudate, malodour, infection, bleeding, dressing comfort and negative psychological and social functioning. Best care wound practices were formulated for each wound type to ease suffering based on the literature review. Although symptom management strategies for comfort may work in tandem with healing interventions, it is important to recognise when efforts towards wound closure may become unrealistic or burdensome for the patient at end of life. Thus, unique aspects of palliative wound care feature clinical indicators for early recognition of delayed healing, quality of life measurement tools related to chronic wounds, and comfort care strategies that align with patient wishes and realistic expectations for wound improvement. PMID:20528993
Chrisman, Christine A
Developing effective communication and symptom assessment skills is an important component of palliative care training for advance practice nurses (APNs) and other health care providers. The purpose of this project was to develop and pilot test a three-station palliative care Observed Structured Clinical Examination (OSCE) for APN students and physician fellows. Three stations included discussing goals of care, breaking bad news, and assessing delirium. Measures included the Interpersonal Skills Tool, Station Checklists, the OSCE Evaluation Tool, and a focus group to solicit learners' perspectives about the experience. Findings showed that learners evaluated the exercise as appropriate for their level of training and that standardized patients were convincing and provided helpful feedback. Learner self-evaluation means were significantly lower than those of standardized patient or faculty, and faculty raters demonstrated low interrater reliability. Initial evaluation suggests a three-station palliative care OSCE exercise is effective for multidisciplinary learners, although additional refinement is necessary. PMID:23550548
Corcoran, Amy M; Lysaght, Susan; Lamarra, Denise; Ersek, Mary
In all, 119 hospice palliative care volunteers from 3 community-based hospice programs completed the Volunteer Retention Questionnaire (VRQ), a 33-item survey designed for this study. The VRQ asks volunteers to rate the importance of each item to their decision to continue volunteering. The items that received the highest mean importance ratings included enjoying the work they do, feeling adequately prepared/trained to perform their role, and learning from their patients' experiences/listening to their patients' life stories. Being recognized (eg, pins for years of service or being profiled in the hospice newsletter), receiving phone calls/cards from their volunteer coordinator on special occasions, and being reimbursed for out-of-pocket expenses were among the items that received the lowest mean importance ratings. Suggestions for improving volunteer retention are provided. PMID:22811213
Claxton-Oldfield, Stephen; Jones, Richard
Recent reviews conclude that the benefits of attending Specialist Palliative Day Care (SPDC) are likely to be in social, psychological and spiritual domains. However, these areas are not easily identified, leaving researchers and practitioners unclear as to what aspects of these domains patients most need and desire. The objective of this review was to systematically evaluate literature on patient-perceived psychosocial experiences of attendance at SPDC. Twelve studies were included. Evidence showed that patients value a person-centred approach that reduces isolation, increases social support, encourages communication and provides activities. Future research could focus on investigating why patients value the psychosocial experiences reported and how these experiences can be defined in a way that would be meaningful to clinical service commissioners. Once this has been done, clinicians can start to measure more effectively clinical effectiveness and devise justifiable interventions to help this patient group. PMID:21228097
Bradley, Sarah E; Frizelle, Dorothy; Johnson, Miriam
As patients with terminal disease enter into the final stage of their illness, psychiatric symptoms and psychological responses to the disease contribute to overall suffering of both patient and family. Until recently, no nationally accepted guidelines or practices had been established to support assessment and management of this type of suffering. In 2007, the National Quality Forum published A National Framework and Preferred Practices for Palliative and Hospice Care Quality that included a list of preferred practices for assessing and treating symptoms of psychiatric illness, anticipatory grief and psychologic distress prior to death, and bereavement after the death, of the patient. While specialized care may be provided to patient and families in the context of advanced disease, all clinicians involved in palliative and end-of-life care are responsible for having a basic understanding of effectively managing psychologic and psychiatric aspects of this care. Evidence from current literature supports these best practices. PMID:19294824
Hultman, Todd; Reder, Elizabeth A Keene; Dahlin, Constance M
We examined the use of ISDN video-phones by health professionals and two types of home care clients: those receiving palliative care and those receiving antenatal care. In the palliative care group, there were four female clients and 15 health professionals; these clients on average had the video-phones at home for six weeks and made 12.5 calls per week. The antenatal care group consisted of six female clients and eight female registered nurses; these clients on average also had the video-phones at home for six weeks and made 12.5 calls per week. Exit interviews were conducted with three clients and eight staff in the palliative care group, and with six clients and three staff in the antenatal care group. Palliative care clients and their families commented that the visual feature of the phone enhanced the care that they received. In the antenatal group, the video-phone was used mainly for booking appointments and arranging home visits. In general, the technology was well received by clients and care providers. PMID:12699575
Miyazaki, Masako; Stuart, Michelle; Liu, Lili; Tell, Sharon; Stewart, Marianne
Background: Palliative care is extremely important for human immunodeficiency virus (HIV)-infected clientele. The impact of HIV infection is significant in the city of New Orleans. As of September 2009, a cumulative total of 29 548 HIV\\/acquired immunodeficiency syndrome (AIDS) cases and 12 267 HIV-related deaths were reported in Louisiana. Methods: Retrospective review of charts of patients enrolled in our palliative
Marco Ruiz; Charles Cefalu
Much progress has been made in the provision of palliative care across sub-Saharan Africa, however much still remains to be done, particularly in the area of children’s palliative care (CPC). The Beacon Centres programme was set up in 2009, aimed at improving access to CPC in South Africa, Uganda and Tanzania through more and better-trained health professionals and CPC clinical services of a high standard. Having identified sites in each country to develop into CPC Beacon Centres, Navigators were identified who would be the ‘champions’ for CPC in those sites and lead a programme of training, mentorship and support. Five navigators (2 in Uganda and Tanzania and 1 in South Africa) were trained between September and December 2009. Following this they undertook CPC needs assessments at the 3 centres and set up and delivered a six-month CPC training programme, providing mentorship and support to students to enable them to integrate CPC into their workplaces. To date, 188 participants have commenced the six-month course, with 80 having completed it. CPC has been integrated into the activities of the centres and a CPC virtual resource centre set up in South Africa. The achievements from the Beacon project have been great and the work of the navigators immense, but as in all projects it has not been without its challenges. Lessons learnt include issues around: the focus of the project; the length and nature of the training; assessment; accreditation; the choice of navigators; mentoring; administrative support; co-ordination; the choice of project sites; and the integration of CPC into services. The need for CPC is not going to go away and it is therefore important that models of scaling-up are found that are not only practical, feasible, affordable and sustainable, but that focus on the outcome of improved CPC for all those who need it. It is hoped that the lessons shared from the Beacon Project will help in developing and implementing such models.
Palliative care provision varies widely, and the effectiveness of palliative and hospice care teams (PCHCT) is unproven. To determine the effect of PCHCT, 10 electronic databases (to 2000), 4 relevant journals, associated reference lists, and the grey literature were searched. All PCHCT evaluations were included. Anecdotal and case reports were excluded. Forty-four studies evaluated PCHCT provision. Teams were home care
Irene J Higginson; Ilora G Finlay; Danielle M Goodwin; Kerry Hood; Adrian G. K Edwards; Alison Cook; Hannah-Rose Douglas; Charles E Normand
The government of Quebec (Canada) is poised to adopt a proposition to legalize euthanasia in the form of "Medical Aid in Dying," which presents a new option for end-of-life care. This proposition arouses concerns among palliative care providers. The aim of this article is to provide a palliative care perspective on Quebec's proposition to legalize euthanasia. Based on the epistemological and methodological framework of critical theory, the following three questions are raised: First, in Quebec's current state of the law, is it possible to relieve the suffering of end-of-life patients? Second, can the Quebec proposition to legalize euthanasia in specific circumstances be harmful? Third, is the Quebec proposition on euthanasia compatible with palliative care and social values? In conclusion, recommendations and alternatives to the current Quebec proposition are suggested. PMID:24125960
Background Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area. Methods A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program. Results To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills. Conclusions The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site (www.cityofhope.org/ACEproject) for additional course information.
Otis-Green, Shirley; Ferrell, Betty; Spolum, Maren; Uman, Gwen; Mullan, Patricia; Baird, Reverend Pamela; Grant, Marcia
Palliative care medicine deals with the issue of death by listening to the story of patient's lives. There are several problems such as stress overload or burnout due to the difficulty in responding to all demands from patients and the shortness of time. These problems sometimes make doctors specializing in palliative care have less interest in patients, negative feelings or an indifferent attitude to them. In this report, two cases in which a psychosomatic medical doctor intervened were analyzed. The satisfaction of patients and the stress overload of doctors engaged in palliative care were examined retrospectively by investigation of patients' charts. Both factors were improved by such interventions, thus underscoring the possible contributions by these doctors in cancer medicine. Psychosomatic medicine is based on a biopsychosocial model and related to both physical and psychosocial factors. There are many similar viewpoints between psychosomatic medicine and palliative care medicine. Psychosomatic medical doctors have an advantage in that they can contribute to palliative care without stress overload or burnout because of their special training in communication skills to deal with patients from the standpoints of both mind and body. However, these doctors have not received psychiatric training so as to be able to diagnose precisely and treat psychiatric problems such as adjustment disorders, depression and delirium. Therefore, their further training in psychiatry for several months or years is an issue to be addressed in future. PMID:20154503
Matsuoka, Hiromichi; Otsuka, Masatomo; Koyama, Atsuko; Hatabe, Shigeru; Funai, Sadao; Tanaka, Akira
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.
High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented. PMID:21448033
Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D
BACKGROUND: There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will
Elizabeth L Sampson; Ingela Thuné-Boyle; Riitta Kukkastenvehmas; Louise Jones; Adrian Tookman; Michael King; Martin R Blanchard
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…
Supiano, Katherine P.; Berry, Patricia H.
Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.
Docherty, Sharron L.; Thaxton, Cheryl; Allison, Courtney; Barfield, Raymond C.; Tamburro, Robert F.
Summary Information generated using outcome measures to measure the effectiveness of palliative care interventions is potentially invaluable. Depending on the measurement tool employed the results can be used to monitor clinical care, carry out comparative research, provide audit data or inform purchas- ing decisions. However, the data collected can only ever be as good as the method used to obtain
Julie Hearn; Irene J. Higginson
Social workers, like other health care providers, may lack the necessary skills for effective pain and symptom management and to competently address the complex yet critical bio-psychosocial-spiritual needs facing seriously ill patients and their families. The purpose of this article is to describe the development of a national educational program designed to promote excellence in pain management and palliative care
Shirley Otis-Green; Sharon Lucas; Maren Spolum; Betty Ferrell; Marcia Grant
Objective To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes. Design Pooled analysis of a retrospective cohort study. Setting Ontario, Canada. Participants 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed). Intervention The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams’ role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day. Main outcome measures Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital. Results In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52). Conclusions Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.
Brazil, Kevin; Sussman, Jonathan; Pereira, Jose; Marshall, Denise; Austin, Peter C; Husain, Amna; Rangrej, Jagadish; Barbera, Lisa
Palliative care seems the right approach to dementia, except that it suggests a dichotomy between cure and care. As in cancer\\u000a care, supportive care provides a broader framework, viewing dementia from the time of diagnosis until death and bereavement.\\u000a The challenge is to find the right approach to the individual. This challenge arises in the person’s own home, in long-term
Anita-Luise Küpper; Julian C. Hughes
In the Rotterdam Cancer Institute, nurses from the palliative care unit take care of accessibility outside office hours for patients transferred home with technical equipment for symptoms control. The nurses use a predetermined assessment tool (PAT) for handling telephone calls. A retrospective evaluation on the registration forms used over the years 1997-1999 was performed to evaluate the telephone service. A total of 124 patients in need of technical support was transferred from the hospital during the study period: 52 in 1997, 33 in 1998, and 39 in 1999. Over the years, 157 calls were registered from 64 (52%) patients. In 1997, the majority of the calls (73%) came from the patient or the family. The frequency of calls from the general practitioner did not change, but calls from the district nurse increased from 12% in 1997 to 35% in 1998, and 48% in 1999. Professionals working in nursing homes have used the telephone service since 1998. The reasons for calling were pain (40%), symptoms other than pain (19%), technical problems (33%), general information and advice (6%), and logistic problems (2%). In 152 of the 157 telephone calls (97%), problems could be solved without admission. The mean time to answer a call was 16 minutes. The telephone service and the use of the PAT made it possible to solve 97% of problems without admission. PMID:12164098
Elfrink, E J; van der Rijt, C C D; van Boxtel, R J J; Elswijk-de Vries, P; van Zuijlen, L; Stoter, G
This article describes a pilot project involving training, case consultations, and administrative coaching over a period of 1 year aimed at introducing palliative care in 2 nursing homes among 31 residents with advanced dementia. Resident outcomes that examined numerous clinical measures were assessed at 3 points in time. Changes in the knowledge and attitudes of 80 staff members and 33 family members who participated in the multimodal intervention were also assessed at 3 points in time. Limited improvements were demonstrated on measures for residents, staff members, and family members at the first nursing home (site 1) and significant improvements were demonstrated at the other nursing home (site 2). Top leadership turned over 3 times at site 1 which limited the integration of palliative care, whereas leadership of site 2 remained stable. Implications for implementing a program of palliative care in nursing homes are discussed. PMID:22296910
Kuhn, Daniel R; Forrest, Jeannine M
There are many challenges in developing research projects in research-naïve clinical settings, especially palliative care where resistance to participate in research has been identified. These challenges to the implementation of research are common in nursing practice and are associated with attitudes towards research participation, and some lack of understanding of research as a process to improve clinical practice. This is despite the professional nursing requirement to conduct research into issues that influence palliative care practice. The purpose of this paper is to describe the process of implementing a clinical research project in collaboration with the clinicians of a palliative care community team and to reflect on the strategies implemented to overcome the challenges involved. The challenges presented here demonstrate the importance of proactively implementing engagement strategies from the inception of a research project in a clinical setting. PMID:24332958
Bullen, Tracey; Maher, Kate; Rosenberg, John P; Smith, Bradley
Terminally ill patients and their families experience many confusing and, at times, traumatic transitions. Examples of such transitions include transitions from cure to comfort care, transitions related to loss, changes in care settings, and psychosocial and spiritual transitions. The purpose of this article is to discuss the experiences of palliative patients and their families as they journey through transitions and how oncology nurses can provide support. Using a composite case study from actual clinical cases as a framework for discussion, the authors present examples of evidence-based strategies that can be used by oncology nurses. Critical points from the case study are Adjustment to death is a process and cannot be rushed. The needs of a palliative patient and family should be heard, honored, and not questioned or challenged. A patient and family should remain in control of decision making, with the hospice and palliative care team acting as guides and facilitators. PMID:16117209
Duggleby, Wendy; Berry, Patricia
Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website . Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166). Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers). Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.
Street, Annette F; Swift, Kathleen; Annells, Merilyn; Woodruff, Roger; Gliddon, Terry; Oakley, Anne; Ottman, Goetz
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.
Background Advances in technology have made the use of telehealth in the home setting a feasible option for palliative care clinicians to provide clinical care and support. However, despite being widely available and accessible, telehealth has still not been widely adopted either in Australia or internationally. The study aim was to investigate the barriers, enablers and perceived usefulness for an established home telehealth program in paediatric palliative care from the perspective of clinicians. Methods Semi-structured interviews (n?=?10) were undertaken with palliative care clinicians in a tertiary paediatric hospital to identify attitudes to, satisfaction with, and perceived benefits and limitations of, home telehealth in palliative care. Iterative analysis was used to thematically analyse data and identify themes and core concepts from interviews. Results Four themes are reported: managing relationships; expectations of clinicians; co-ordination, and the telehealth compromise. Core concepts that emerged from the data were the perceived ability to control clinical encounters in a virtual environment and the need to trust technology. These concepts help explain the telehealth compromise and low utilisation of the home telehealth program. Conclusions Effective communication between caregivers and clinicians is recognised as a core value of palliative care. Home telehealth has the potential to provide a solution to inequity of access to care, facilitate peer support and maintain continuity of care with families. However, significant limitations and challenges may impede its use. The virtual space creates additional challenges for communication, which clinicians and families may not intuitively understand. For home telehealth to be integrated into routine care, greater understanding of the nature of communication in the virtual space is required.
Goal Although the importance of the palliative care team (PCT) to university hospitals is widely accepted, the issues of palliative\\u000a care at the national level have not been clarified. We conducted a nationwide survey of the current status of PCTs in all\\u000a (123) Japanese university hospitals.\\u000a \\u000a \\u000a \\u000a Materials and methods In 2003, 2004 and 2005, the authors conducted a self-reporting cross-sectional survey. Questionnaires
Mitsunori Miyashita; Shigehito Nishida; Yurie Koyama; Rieko Kimura; Tomoyo Sasahara; Yuki Shirai; Masako Kawa
A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 15 palliative care informal caregivers in University Malaya Medical Centre. The data were thematically analyzed. Seven basic themes were generated (1) empathic suffering, (2) anticipatory grief, (3) obsessive-compulsive suffering, (4) helpless-powerless suffering, (5) obligatory suffering, (6) impedimental suffering, and (7) repercussion suffering. A model of compassion suffering was conceptualized from the analysis. This model may serve as a guide in the assessment and management of suffering in palliative care informal caregivers. PMID:23341445
Beng, Tan Seng; Guan, Ng Chong; Seang, Lim Kheng; Pathmawathi, Subramaniam; Ming, Moy Foong; Jane, Lim Ee; Chin, Loh Ee; Loong, Lam Chee
Constipation can cause unnecessary discomfort and suffering for patients, and there appears to be a lack of awareness among nurses and doctors about its cause, impact and management. A large proportion of the evidence for the assessment and management of constipation in the context of palliative care is derived from the perspective of advanced cancer and from guidelines developed at a European level. Although constipation remains a problem for palliative care patients, early intervention combined with continuous and impeccable assessment can assist in its management and improve patient comfort at the end of life. PMID:22306597
Connolly, Michael; Larkin, Philip
Background The introduction of paediatric palliative care and referral to specialised teams still occurs late in the illness trajectory of children with life-limiting diseases. The aim of this ongoing multipart study was to develop a screening instrument for paediatricians that would improve the timely identification of children who could benefit from a palliative care approach. Methods We used a qualitative study approach with semi-structured interviews (Part 1) and a focus group discussion (Part 2) to define the domains and items of the screening instrument. Seven international paediatric palliative care experts from the UK, France, USA, and Canada took part in face-to-face interviews, and eleven paediatric health professionals from the University Children’s Hospital, Zurich, participated in a subsequent focus group discussion. Results This preliminary phase of development and validation of the instrument revealed five domains relevant to identifying children with life-limiting diseases, who could benefit from palliative care: 1) trajectory of disease and impact on daily activities of the child; 2) expected outcome of disease-directed treatment and burden of treatment; 3) symptom and problem burden; 4) preferences of patient, parents or healthcare professional; and 5) estimated life expectancy. Where palliative care seems to be necessary, it would be introduced in a stepwise or graduated manner. Conclusions This study is a preliminary report of the development of an instrument to facilitate timely introduction of palliative care in the illness trajectory of a severely ill child. The instrument demonstrated early validity and was evaluated as being a valuable approach towards effective paediatric palliative care.
Many barriers, including being uninsured or having less than comprehensive health insurance coverage, reduce access to palliative and end-of-life care by inner city minorities. Medicaid or Medicare coverage alone can limit options for pain and symptom management, especially when late referrals make it more difficult to achieve symptom control. Patient affiliation with a religion could offset perceived difficulties with pain medication as well as negative pain and symptom attitudes. Data were analyzed from the most recent assessments of 146 African Americans and Latinos enrolled in an outpatient palliative care unit of an inner city hospital. Fifty-seven percent were receiving palliative care for cancer. Compared with other patients, patients with a religious affiliation did not differ regarding pain medication stress. Uninsured patients with a religious affiliation reported more hopeful pain and symptom attitudes, while patients with a religious affiliation covered only by Medicaid reported less hopeful pain and symptom attitudes. More hopeful pain and symptom attitudes by religious-affiliated, uninsured patients may reveal adequate coping, yet also conceal problem domains. Conversely, less hopeful attitudes by religious-affiliated patients covered only by Medicaid serve as clues to coping difficulties and problem domains. Palliative care programs should carefully consider how to integrate religious support networks as pipelines for program referrals and potential partners for care.
Francoeur, Richard B.; Payne, Richard; Raveis, Victoria H.; Shim, Hyunjung
This study sought to assess the perception of nurses with respect to cancer patients under palliative care. It is an exploratory study with a qualitative approach conducted with nurses from a hospital attending cancer patients under palliative care located in the city of João Pessoa, State of Paraíba. The study included nine nurses who worked in the hospital. The empirical material was collected using the technique of semi-structured interviews and analyzed using the content analysis technique. The interpretative analysis of the interviews led to the definition of three categories: Improving the quality of life through the alleviation of pain and suffering; Palliative Care: a multi-professional study of terminal patients and their families in the grieving process; Communication: a source of dignity in the terminal care process. The conclusion reached is that the study revealed that the nurses involved acknowledge the importance of the multidisciplinary team. It enables the nurses to reflect on the use of communication as an essential element of care for patient and family under palliative care. It is hoped that the data obtained may foster further research on the topic. PMID:23989565
Fernandes, Maria Andréa; Evangelista, Carla Braz; Platel, Indiara Carvalho dos Santos; Agra, Glenda; Lopes, Marineide de Souza; Rodrigues, Francileide de Araújo
Purpose: As palliative care further integrates into cancer care, descriptions of how supportive care quality measures improve patient outcomes are necessary to establish best practices. Methods: We assessed the relationship between conformance to 18 palliative care quality measures and quality of life from data obtained using our novel point-of-care, electronic quality monitoring system, the Quality Data Collection Tool for Palliative Care (QDACT-PC). All patients with cancer from January 2008 through March 2011 seen in the Carolinas Palliative Care Consortium were evaluated for demographic, disease, prognostic, performance status, and measure conformance variables. Using univariate and multivariate regression, we examined the relationship between these variable and high quality of life at the initial specialty palliative care consultation. Results: Our cohort included 459 patients, the majority of whom were over age 65 years (66%) and white (84%). Lung (29.1%) and GI (24.7%) cancers were most common. In univariate analyses, conformance to assessment of comprehensive symptoms, fatigue and constipation assessment, timely management of pain and constipation, and timely emotional well-being assessment were associated with highest levels of quality of life (all Ps < .05). In a multivariate model (C-stat = 0.66), performance status (odds ratio [OR], 5.21; P = .003), estimated life expectancy (OR, 22.6; P = .003), conformance to the measure related to emotional well-being assessment (OR, 1.60; P = .026), and comprehensive screening of symptoms (OR, 1.74, P = .008) remained significant. Conclusion: Oncology care pathways that routinely incorporate supportive care principles, such as comprehensive symptom and emotional well-being assessments, may improve patient outcomes.
Kamal, Arif H.; Bull, Janet; Stinson, Charles S.; Blue, Debra L.; Abernethy, Amy P.
Health reform in the United States must address both access to medical services and universal insurance coverage, as well as health care cost containment. Uncontrolled health care costs will undermine improvements in access and coverage in the long-run, and will also be detrimental to other important social programs and goals. Accordingly, the authors offer an ethical perspective on health care
Bruce Jennings; Mary Beth Morrissey
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.
Chaturvedi, Santosh K.; Loiselle, Carmen G.; Chandra, Prabha S.
Over 1 million people are living with HIV/AIDS in Uganda and there is a need for the provision of comprehensive palliative care. There is minimal literature with regard to the provision of palliative care in Uganda and there is no evaluation literature on the quality of palliative care education programmes. The aim of the study was to conduct an evaluation of a modular HIV/AIDS palliative care education programme undertaken in rural Uganda by the Mildmay Centre. The evaluation was based on a case study design where the researcher worked alongside the training team. It was undertaken in Rukungiri district and participants on the programme were drawn from four different health facilities within the district. The evaluation took place between January 2004 and December 2005 and multiple sources of data were used. Forty interviews and twenty focus group discussions were held, the work of the mobile training team was observed, documents reviewed and a research diary maintained by the researcher. A perceived and reported impact was seen at the patient and community level, participant level, health facility and district levels. An increase in access to care by people living with HIV/AIDS was seen as stigma was reduced and the attitudes of health workers towards people living with HIV/AIDS improved. Strengths and weaknesses of the programme were identified along with recommendations for future programmes. PMID:19060807
Downing, Julia; Kawuma, Esther
Background: Palliative care is an emerging area of medicine with potential to affect positively many chronically ill patients. This study investigated the knowledge and attitude of healthcare workers in a tertiary level hospital in Nigeria where a palliative care unit is being established. Material and Methods: The study was a cross-sectional questionnaire-based study carried out among healthcare workers in Ekiti State University Teaching Hospital, Ado-Ekiti, south-west Nigeria. The questionnaire had sections about definition of palliative care, its philosophy, communication issues, medications, and contexts about its practice. The information obtained from the questionnaire was coded, entered, and analyzed using IBM SPSS version 19. Results: A total of 170 questionnaires were returned within the stipulated time frame with response rate of 66.7%. Majority, (135, 86%) respondents felt palliative care was about the active management of the dying while 70.5% of respondents equated palliative care to pain management. Regarding the philosophy of palliative care, 70 (57.9%) thought that it affirms life while 116 (78.4%) felt palliative care recognizes dying as a normal process. One hundred and twenty-two (78.7%) respondents were of the opinion that all dying patients would require palliative care. The patient should be told about the prognosis according to 122 (83%) respondents and not doing so could lead to lack of trust (85%). Regarding the area of opioid use in palliative care, 76% of respondents agreed that morphine improves the quality of life of patients. Conclusion: There are plausible gaps in the knowledge of the healthcare workers in the area of palliative care. Interventions are needed to improve their capacity.
Fadare, Joseph O; Obimakinde, Abimbola M; Afolayan, Jide M; Popoola, Sunday O; Aduloju, Tolulope; Adegun, Patrick T
The Questionnaire on Palliative Care for Advanced Dementia (qPAD) is a 2-part instrument that measures long-term care staff knowledge, and beliefs, perceptions, and attitudes about palliative and end-of-life care for persons with advanced dementia. Factor analyses of the Knowledge Test (coefficient ? = .81) produced 3 factors: Anticipating Needs, Preventing Negative Outcomes, and Insight and Intuition (coefficient ? = .75, .73, and .58, respectively), explaining 67% of the total variance. Factor analyses of the Attitude Scale (coefficient ? = .83) produced 3 factors: Job Satisfaction, Perceptions and Beliefs, and Work Setting Support of Families (coefficient ? = .90, .64, and .67, respectively), explaining 68% of the total variance. These initial findings hold promise for an instrument that measures both knowledge and attitudes of long-term care staff in the care of persons with advanced dementia. PMID:23002199
Long, Carol O; Sowell, Evelyn J; Hess, Robert K; Alonzo, Tena R
Recent educational efforts in the US medical community have begun to address the critical issue of palliative care for terminally ill patients. However, a newly introduced bill in Congress, the Pain Relief Promotion Act of 1999 (PRPA), could dramatically hinder these efforts if enacted. The act criminally punishes the use of controlled substances to cause-or assist in causing-a patient's death. The primary purposes of PRPA are to override the physician-assisted suicide law currently in effect in Oregon and prohibit other states from enacting similar laws. The act also includes valuable provisions for better research and education in palliative care, but the benefits of those provisions are outweighed by the punitive sections of the act. Under PRPA, the quality of palliative care in the United States could be compromised when physicians, fearing criminal prosecution, err on the side of caution rather than risk their patients' deaths by using highly aggressive pain treatments. Furthermore, PRPA would put Drug Enforcement Administration officials, who have no medical expertise, in the position of regulating medical decisions. The act also would interfere with individual states' long-standing authority over medical practice. Finally, PRPA would discourage physicians from engaging in experimentation and innovation in palliative care, again out of concern for crossing the line between relief of suffering and physician-assisted suicide. Other bills have been introduced that go much further than PRPA to encourage palliative care, without its problematic provisions. Regardless of the controversy surrounding physician-assisted suicide in the United States, the need for quality end-of-life care will be far better served if Congress enacts one of these bills rather than PRPA. PMID:10634344
Orentlicher, D; Caplan, A
Background Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org. Methods A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality. Results A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies. Conclusions The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.
Background Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT), a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. Methods Data were collected from the 1986-2008 ANT archives and documents from the Emilia-Romagna Region Health Department, Italy. Outcomes of interest were changed in: number of patients served, performance status at admission (Karnofsky Performance Status score [KPS]), length of participation in the program (days of care provided), place of death (home vs. hospital/hospice), and satisfaction with care. Statistical methods included linear and quadratic regressions. A linear and a quadratic regressions were generated; the independent variable was the year, while the dependent one was the number of patients from 1986 to 2008. Two linear regressions were generated for patients died at home and in the hospital, respectively. For each regression, the R square, the unstandardized and standardized coefficients and related P-values were estimated. Results The number of patients served by ANT has increased continuously from 131 (1986) to a cumulative total of 69,336 patients (2008), at a steady rate of approximately 121 additional patients per year and with no significant gender difference. The annual number of home visits increased from 6,357 (1985) to 904,782 (2008). More ANT patients died at home than in hospice or hospital; this proportion increased from 60% (1987) to 80% (2007). The rate of growth in the number of patients dying in hospital/hospice was approximately 40 patients/year (p < 0.01), vs. approximately 177 patients/year for patients who died at home. The percentage of patients with KPS < 40 at admission decreased from 70% (2003) to 30% (2008); the percentage of patients with KPS > 40 increased. Mean days of care for patients with KPS > 40 exceeded mean days for patients with KPS < 40 (p < 0.001). Patients and caregivers reported high satisfaction with care in each year of assessment; in 2008, among 187 interviewed caregivers, 95% judged the quality of doctors' assistance, and 91% judged the quality of nurses' assistance, to be "optimal." Conclusions The ANT home care model of palliative care delivery has been well-received, with progressively growing numbers of patients served. It has resulted in a greater proportion of home deaths and in patients' accessing palliative care at an earlier point in the disease trajectory. Changes in ANT chronicle palliative care trends in general.
This article describes a pilot project involving training, case consultations, and administrative coaching over a period of 1 year aimed at introducing palliative care in 2 nursing homes among 31 residents with advanced dementia. Resident outcomes that examined numerous clinical measures were assessed at 3 points in time. Changes in the knowledge and attitudes of 80 staff members and 33
Daniel R. Kuhn; Jeannine M. Forrest
BACKGROUND: Based on positive findings from a randomized controlled trial, Kaiser Permanente's national executive leadership group set an expectation that all Kaiser Permanente and partner hospitals would implement a consultative model of interdisciplinary, inpatient-based palliative care (IPC). Within one year, the number of IPC consultations program-wide increased almost tenfold from baseline, and the number of teams nearly doubled. We report
Richard Penna; Helene Martel; Esther B Neuwirth; Jennifer Rice; Marta I Filipski; Jennifer Green; Jim Bellows
Background: Transdermal fentanyl is a widely used opioid for the treatment of cancer pain. Simplicity of use and high patient compliance are the main advantages of this opioid. However, based on our clinical experience, transdermal fentanyl is often not efficacious in terminally ill palliative care patients. We thus retrospectively examined the pain management and need for opioid switching in cancer
Katri Elina Clemens; Eberhard Klaschik
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…
O'Connor, Margaret; Abbott, Jo-Anne; Recoche, Katrina
Assessment in Palliative Care is a broad field trying to integrate various dimensions from physical, psychological, social and spiritual problems and suffering. Medical diagnosis alone may not successfully reflect this multidimensional aspects, as it may be true for nursing diagnosis. In addition, any assessment procedures in palliative care needs a) to be performed in an interprofessional way, i.e. integrating various perspectives, b) to avoid additional burden for the patient, and c) to allow repetitive longitudinal follow up in order to assess the outcomes of interventions. Derived from WHO definition of Palliative Care from 2002 we developed at our centre the problem- rather than diagnosis based SENS-Model and started its clinical implementation. This new tool to structure narratives from patients may facilitate not only to prioritize the various problems, but also to define tasks and responsibilities within the team including the evaluation of the intended benefit. Apart, SENS may help to avoid medicalisation and focus on pathological rather then salutogenetic interpretation. By this, SENS may develop towards a first problem - based ";classification and assessment system" in palliative care, possibly valuable for other chronic diseases and its multidimensional problems, too. PMID:22334197
Within the last decade, there has been a rapid expansion in the United Kingdom of clinical nurse specialists (CNSs), yet there has been limited evidence of their effectiveness. The clinical area of palliative care has one of the largest numbers of CNSs which has particularly started to escalate in the acute hospital setting. Following the Calman-Hine Report and the more
Barbara Jack; Jackie Oldham; Anne Williams
Objective: Social work's emphasis on the strengths and personal resources of clients can enrich our understanding of palliative care patients. In this study, availability of various personal resources to patients is examined. Also explored are differences in psychosocial outcome between patients with a particular personal resource and those without it.Methods: Clinical data mining was the research method. Clinical records of
Wallace C. H. Chan
One hundred patients admitted to an acute hospice\\/palliative care unit in a U.S. teaching hospital were evaluated using a standardized data acquisition tool that assessed the presence of physical symptoms and attitudes concerning admission to such a specialty unit. Patients entering the unit between June 1995 and October 1995 completed the tool within 24 hours of admission. Symptoms reported were
Kai Ng; Charles F. von Gunten
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…
Freeman, Shannon; Heckman, George; Naus, Peter J.; Marston, Hannah R.
Abstract Background: Undergraduate education in palliative care is essential if doctors are to be competent to care for dying patients and their families in a range of specialties and healthcare settings. However, creating space for this within existing undergraduate and foundation year curricula poses significant challenges. We aimed to develop consensus learning outcomes for palliative care teaching in the university medical schools in Scotland. Methods: The General Medical Council (GMC) outlines a number of learning outcomes with clear relevance to palliative care. Leaders from the five Scottish medical schools identified and agreed a small number of outcomes, which we judged most relevant to teaching palliative care and collated teaching resources to support these. Results: Consensus learning outcomes for undergraduate palliative care were agreed by our mixed group of clinician educators over a number of months. There were many secondary gains from this process, including the pooling of educational resources and best practice, and the provision of peer support for those struggling to establish curriculum time for palliative care. Discussion: The process and outcomes were presented to the Scottish Teaching Deans, with a view to their inclusion in undergraduate and foundation year curricula. It is through a strong commitment to achieving these learning outcomes that we will prepare all doctors for providing palliative care to the increasing numbers of patients and families that require it. PMID:24593771
Linklater, Gordon T; Bowden, Joanna; Pope, Lyndsey; McFatter, Fiona; Hutchison, Stephen M W; Carragher, Pat J; Walley, John; Fallon, Marie; Murray, Scott A
Background Knowledge about the quality and organisation of care to terminally ill cancer patients with a relatives' view in a primary health care setting is limited. The aim of the study is to analyse experiences and preferences of bereaved relatives to terminally ill cancer patients in a primary care setting to explore barriers and facilitators for delivery of good palliative home care. Methods Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results Three main categories of experience were identified: 1) The health professionals' management, where a need to optimize was found. 2) Shared care, which was lacking. 3) The relatives' role, which needs an extra focus. Conclusion Relatives experience insufficient palliative care mainly due to organizational and cultural problems among professionals. Palliative care in primary care in general needs improvement and attention should be drawn to the "professionalization" of the relatives and the need to strike a balance between their needs, wishes and resources in end-of-life care and bereavement.
Neergaard, Mette Asbjoern; Olesen, Frede; Jensen, Anders Bonde; Sondergaard, Jens
Background Today, prehospital emergency medical teams (EMTs) are confronted with emergent situations of cardiac arrest in palliative care patients. However, little is known about the out-of-hospital approach in this situation and the long-term survival rate of this specific patient type. The aim of the present investigation was to provide information about the strategic and therapeutic approach employed by EMTs in outpatient palliative care patients in cardiac arrest. Methods During a period of 2 years, we retrolectively analysed emergency medical calls with regard to palliative care emergency situations dealing with cardiac arrest. We evaluated the numbers of patients who were resuscitated, the prevalence of an advance directive or other end-of-life protocol, the first responder on cardiac arrest, the return of spontaneous circulation (ROSC) and the survival rate. Results Eighty-eight palliative care patients in cardiac arrest were analysed. In 19 patients (22%), no resuscitation was started. Paramedics and prehospital emergency physicians began resuscitation in 61 cases (69%) and in 8 cases (9%), respectively. A total of 10 patients (11%) showed a ROSC; none survived after 48 h. Advance directives were available in 43% of cases. The start of resuscitation was independent of the presence of an advance directive or other end-of-life protocol. Conclusions Strategic and therapeutic approaches in outpatient palliative care patients with cardiac arrest differ depending on medical qualification. Although many of these patients do not wish to be resuscitated, resuscitation was started independent of the presence of advance directive. To reduce legal insecurity and to avoid resuscitation and a possible lengthening of the dying process, advance directives and/or “Do not attempt resuscitation” orders should be more readily available and should be adhered to more closely.
Bartels, Utz E.; Zausig, York A.; Pfirstinger, Jochen; Graf, Bernhard M.; Hanekop, Gerd G.
Palliative and end-of-life care in England has undergone some remarkable transformations across the course of less than half a century and can be seen as a useful case study with which to understand international trends and challenges. This paper examines some of the long term influences which led to the emergence, for the very first time, of an End-of-Life Care
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
Daryl Bainbridge; Kevin Brazil; Paul Krueger; Jenny Ploeg; Alan Taniguchi
In Canada, the aging population with a rising incidence of chronic diseases-and thus more complex care needs-is putting significant pressure on the health care system, long-term care system, and family caregivers. Ten years ago, the Government of Canada appointed Canada's first Minister with Special Responsibility for Palliative Care. During that time, the federal government developed significant public policy goals for palliative care, including the Canadian Strategy on Palliative and End-of-Life Care. This strategy led to many policy improvements, particularly in the areas of research and data collection, education for health care professionals, and support for caregivers. In 2007, the Secretariat within the federal government supporting the Canadian strategy was defunded and disbanded. Four years later, progress in improving palliative care for Canadians has slowed. This article reviews some of the successes of palliative care policy and research in Canada and outlines several lessons to be learned for other jurisdictions developing public policy for palliative care. PMID:21872425
Carstairs, Sharon; MacDonald, Michelle L
Background Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team. In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations. Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation. Methods/design This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews,