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1

The Griffith area palliative care service: a pilot project.  

PubMed

In September 2000 the Commonwealth released, as part of its National Palliative Care Strategy under the Australian Health Care Agreements, a National Framework for Palliative Care Service Development. The new National Framework stressed an important set of values to guide models of palliative care delivery. It notes that the challenge is to secure the place of palliative care as an integral part of health care across Australia, routinely available within local communities to those people who need it. Care and support for people who are dying and their families need to be built not only into health care services, but also into the fabric of communities and their support networks. While few would disagree with this, little is known about how best to achieve it in rural Australia. The Griffith Area Palliative Care Service (GAPS) is a two-year pilot project delivering a palliative care service through a truly integrated approach to care for patients, their carers and families within the Griffith Local Government Area and Carrathool Shire areas. This paper describes how GAPS is successfully meeting the challenges of service provision to rural and remote areas. PMID:15368831

Hatton, Ian; McDonald, Keith; Nancarrow, Lynette; Fletcher, Keith

2003-01-01

2

Palliative Care  

MedlinePLUS

... potentially extend to years, palliative care includes symptom management, therapy aimed at restoring function, practical support, and psychological interventions. At all stages of the disease, effective palliative ...

3

Considering Aboriginal palliative care models: the challenges for mainstream services.  

PubMed

This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The 'living model' coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government's National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples' community values, beliefs, cultural/ spiritual rituals, heritage and place. PMID:23651262

O'Brien, Anthony P; Bloomer, Melissa J; McGrath, Pam; Clark, Katherine; Martin, Tony; Lock, Mark; Pidcock, Tina; van der Riet, Pamela; O'Connor, Margaret

2013-01-01

4

Organizational Interventions concerning Palliation in Community Palliative Care Services: A Literature Study.  

PubMed

Background. Studies indicate problems between different professional groups working with palliative care and the organisation of palliative home care at nursing homes. The purpose of this study is to examine international experiences and cooperative development initiatives regarding the organisation of community palliative care services. Method. The study has been carried out as a literature study based on bibliographic searches in international databases with selected key words. Results and Conclusion. The study of the literature identified 19 studies described in 20 articles that relate to development efforts and interventions regarding the organisation of palliative care in communities. Nearly, all of the studies were based on health care professionals' assessments of users (the relatives). However, it is unknown whether or how patients and relatives experience a positive effect of the interventions. The literature study shows that it is a great methodological challenge to complete and evaluate studies concerning organisation and cooperation using methods that make the results useful for others. PMID:22919513

Raunkiær, Mette; Timm, Helle

2012-01-01

5

Organizational Interventions concerning Palliation in Community Palliative Care Services: A Literature Study  

PubMed Central

Background. Studies indicate problems between different professional groups working with palliative care and the organisation of palliative home care at nursing homes. The purpose of this study is to examine international experiences and cooperative development initiatives regarding the organisation of community palliative care services. Method. The study has been carried out as a literature study based on bibliographic searches in international databases with selected key words. Results and Conclusion. The study of the literature identified 19 studies described in 20 articles that relate to development efforts and interventions regarding the organisation of palliative care in communities. Nearly, all of the studies were based on health care professionals' assessments of users (the relatives). However, it is unknown whether or how patients and relatives experience a positive effect of the interventions. The literature study shows that it is a great methodological challenge to complete and evaluate studies concerning organisation and cooperation using methods that make the results useful for others. PMID:22919513

Raunkiær, Mette; Timm, Helle

2012-01-01

6

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

PubMed

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

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

2014-10-10

7

Palliative Care  

MedlinePLUS

... asked to make many difficult decisions about their child’s care. These decisions are especially urgent for parents of ... care can be an appropriate part of your child’s care plan. Palliative care will assist you in making ...

8

Palliative Care  

MedlinePLUS

Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...

9

A method to determine spatial access to specialized palliative care services using GIS  

Microsoft Academic Search

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

Jonathan Cinnamon; Nadine Schuurman; Valorie A Crooks

2008-01-01

10

Assessing Need for Palliative Care Services for Children in Mexico.  

PubMed

Abstract Background: Pediatric palliative care increasingly became integrated into health care institutions worldwide over the last decade. However, in Mexico and other developing countries with large populations of children, little is known regarding the need for palliative care services. We aimed to assess the need for palliative and end-of-life care for children dying in public hospitals affiliated with Secretaria de Salud in Mexico. Measurement: We conducted a retrospective review of deaths of children (1-17 years old) occurring during 2011 and determined deaths associated with underlying complex chronic conditions by reviewing the four causes of death listed in the death certificate. We collected sociodemographic and clinical data and utilized univariate and multivariate analyses to determine factors associated with complex chronic conditions. Results: A total of 2715 pediatric deaths were studied. We found 41% were associated with a complex chronic condition. The most frequent types of conditions were malignancies (47%), neuromuscular (18%), cardiovascular (12%), and renal (10%). Children with renal and malignant conditions died at an older age than children with other types of complex chronic conditions. Multivariate analysis indicated the independent predictors of death with complex chronic condition were no indigenous ethnicity, lack of admission to the intensive care unit during the final hospital stay, and having affiliation with an institution for health care. Conclusions: A large proportion of pediatric deaths are associated with complex chronic conditions indicating the provision of adequate funding for professional education and palliative care initiatives for children in Mexico, should be a topic of the national health care agenda. PMID:25353338

Cardenas-Turanzas, Marylou; Tovalin-Ahumada, Horacio; Romo, Carlos Guillermo; Okhuysen-Cawley, Regina

2014-10-29

11

An investigation of general practitioner referrals to palliative care services.  

PubMed

A cross-sectional interview study designed to elicit general practitioners' reasons for referral to palliative care services was conducted. Three groups of general practitioners (GPs) were sampled: frequent referrers, non-referrers and nurse referrers. Fifteen GPs from each group were interviewed. A structured interview was carried out either face-to-face or over the telephone. The results showed significant differences between groups of GPs relating to why they did and did not refer patients to palliative care services. The main difference was that the GPs who frequently referred did so most often for 'nursing support', while those in the non-referring group most commonly mentioned 'symptom control'. Fifty-three per cent of both frequent and non-referring GPs gave 'the carers coping well' as the commonest reason for not referring patients. Significant differences were also shown in what the GPs perceived was the most important thing they could offer cancer patients, with 60% of the GPs who had referred no patients answering 'my time'. The results also provided evidence that the majority of the GPs characterised a 'good death' as being 'pain free', and that they perceived themselves to have an important role in providing palliative care for their terminally ill patients. PMID:8817597

Pugh, E M

1996-07-01

12

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

PubMed

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

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

2012-03-01

13

Euthanasia in Palliative Care Journals  

Microsoft Academic Search

With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the

Maaike A Hermsen; Henk A. M. J ten Have

2002-01-01

14

Treatment Approaches (Palliative Care)  

MedlinePLUS

... about such topics as religion, death, and afterlife. Palliative Care Websites American Academy of Hospice and Palliative Medicine ... Life Physician Education Resource Center European Association for Palliative Care Growth House, Inc. Hospice Cares International Hospice Institute & ...

15

Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up  

Microsoft Academic Search

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

Irene J Higginson; Sam Hart; Rachel Burman; Eli Silber; Tariq Saleem; Polly Edmonds

2008-01-01

16

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review  

PubMed Central

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. PMID:22546595

Gardiner, Clare; Gott, Merryn; Ingleton, Christine

2012-01-01

17

Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom  

PubMed Central

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

2014-01-01

18

Patterns of access to community palliative care services: a literature review.  

PubMed

Policies state that access to palliative care should be provided according to principles of equity. Such principles would include the absence of disparities in access to health care that are systematically associated with social advantage. A review of the literature a decade ago identified that patients with different characteristics used community palliative care services in variable ways that appeared inequitable. The objective of this literature review was to review recent literature to identify whether such variability remains. Searching included the use of electronic databases, scrutinizing bibliographies, and hand searching journals. Articles were included if they were published after 1997 (the date of the previous review) up to the beginning of 2008, and if they reported any data that investigated the characteristics of adult patients in relation to their relative utilization of community palliative care services, with reference to a comparator population. Forty-eight studies met the inclusion criteria. Patients still access community palliative care services in variable ways. Those who are older, male, from ethnic minority populations, not married, without a home carer, are socioeconomically disadvantaged, and who do not have cancer are all less likely to access community palliative care services. These studies do not identify the reasons for such variable access, or whether such variability is warranted with reference to clinical need or other factors. Studies tend to focus on access to specialist palliative care services without looking at the complexities of service use. Studies need to move beyond description of utilization patterns, and examine whether such patterns are inequitable, and what is happening in the referral or other processes that may result in such patterns. PMID:19097748

Walshe, Catherine; Todd, Chris; Caress, Ann; Chew-Graham, Carolyn

2009-05-01

19

Primary care group commissioning of services: the differing priorities of general practitioners and district nurses for palliative care services.  

PubMed Central

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. PMID:10343419

Barclay, S; Todd, C; McCabe, J; Hunt, T

1999-01-01

20

Reaching out to Ray: delivering palliative care services to a homeless person in Melbourne, Australia.  

PubMed

Most terminally ill people express a preference for dying at home. Within established models of palliative care, achieving death at home is a particular challenge for homeless people. This paper describes a quality-improvement project undertaken by a community-based palliative care service in Melbourne, Australia, to understand homeless people's palliative care needs and the challenges that workers face. Six semi-structured interviews with workers in hospital and community-based settings were undertaken and a case study documented. The results were used to initiate discussion about how policy and protocols for the community-based palliative care service might serve this population more effectively. The findings confirmed that homeless people have complex psychosocial and medical needs. They may be periodically uncontactable or living in unsafe settings, experience isolation from social support networks, and have issues of compliance with treatment protocols exacerbated by mental health problems and/or substance abuse. Service providers had particular challenges in meeting the palliative care needs of homeless people. A flexible, compassionate, and coordinated response is required, and more work is needed to explore how the needs of this particular group can be met. PMID:24577214

MacWilliams, Judy; Bramwell, Michael; Brown, Sally; O'Connor, Margaret

2014-02-01

21

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

PubMed

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

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

2014-05-28

22

The status of complementary therapy services in Canadian palliative care settings  

Microsoft Academic Search

Goal of work  Little is known about complementary therapy services (CTs) available in Canadian palliative care settings.\\u000a \\u000a \\u000a \\u000a Materials and methods  An online survey was e-mailed to multiple Canadian palliative care settings to determine the types and frequency of CTs provided\\u000a and allowed, who are the CT providers, funding of CT services, and barriers to the provision of CTs.\\u000a \\u000a \\u000a \\u000a Main results  The response rate

Doreen Oneschuk; Lynda Balneaves; Marja Verhoef; Heather Boon; Craig Demmer; Lyren Chiu

2007-01-01

23

Pediatric Palliative Care  

PubMed Central

Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palliative care, but continued research into this important area of pediatrics will lead to improvements in the care of children with life-threatening illnesses. PMID:23118638

Johnston, Donna L.; Hentz, Tracy A.; Friedman, Debra L.

2005-01-01

24

Does it Matter What You Call It? A Randomized Trial of Language Used to Describe Palliative Care Services  

PubMed Central

Purpose Integration of palliative care into oncology practice remains suboptimal. Misperceptions about the meaning of palliative care may negatively impact utilization. We assessed whether the term and/or the description of palliative care services affected patient views. Methods 2×2 between-subject randomized factorial telephone survey of 169 patients with advanced cancer. Patients were randomized into 1 of 4 groups that differed by name (supportive care vs. palliative care) and description (patient-centered vs. traditional). Main outcomes (0–10 Likert scale) were patient understanding, impressions, perceived need, and intended use of services. Results When compared to palliative care, the term supportive care was associated with better understanding (7.7 vs. 6.8; p=0.021), more favorable impressions (8.4 vs. 7.3; p=0.002), and higher future perceived need (8.6 vs. 7.7; p=0.017). There was no difference in outcomes between traditional and patient-centered descriptions. In adjusted linear regression models, the term supportive care remained associated with more favorable impressions (p=0.003) and higher future perceived need (p=0.022) when compared to palliative care. Conclusions Patients with advanced cancer view the name supportive care more favorably than palliative care. Future efforts to integrate principles of palliative medicine into oncology may require changing impressions of palliative care or substituting the term supportive care. PMID:23942596

Maciasz, R.M.; Arnold, R.; Chu, E.; Park, S.Y.; White, D.B.; Borgenheimer, L.; Schenker, Y.

2013-01-01

25

Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives  

PubMed Central

Background Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to. Conclusions Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families. PMID:23140143

2012-01-01

26

“Not the ‘Grim Reaper Service’”: An Assessment of Provider Knowledge, Attitudes, and Perceptions Regarding Palliative Care Referral Barriers in Heart Failure  

PubMed Central

Background Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. Methods and Results We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF?related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Conclusions Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease?related burden. PMID:24385453

Kavalieratos, Dio; Mitchell, Emma M.; Carey, Timothy S.; Dev, Sandesh; Biddle, Andrea K.; Reeve, Bryce B.; Abernethy, Amy P.; Weinberger, Morris

2014-01-01

27

Comfort in the last 2 weeks of life: relationship to accessing palliative care services  

Microsoft Academic Search

Introduction  Specialised palliative care services (SPCS) aim to address the needs of patients and caregivers confronting life-limiting\\u000a illnesses but only half of the potential cohort are referred. Randomised controlled trials of SPCS provision can no longer\\u000a be ethically justified so there is a need to develop new methods to evaluate the net impact of SPCS for the whole community,\\u000a not just

David C. Currow; Alicia M. Ward; John L. Plummer; Eduardo Bruera; Amy P. Abernethy

2008-01-01

28

Palliative or Comfort Care  

MedlinePLUS

... at the National Institutes of Health English Brochure: http://www.ninr.nih.gov/sites/www.ninr. nih.gov/files/palliative-care-brochure.pdf Spanish Brochure: http://www.ninr.nih.gov/sites/www.ninr. nih. ...

29

Palliative Care in Cancer  

MedlinePLUS

... methods, such as nutrition therapy , physical therapy , or deep breathing techniques. Also, chemotherapy , radiation therapy , or surgery ... An expert in palliative care can help people explore their beliefs and values so that they can ...

30

What is palliative care?  

MedlinePLUS

... be offered for people with illnesses, such as: Cancer Heart disease Lung diseases Kidney failure Dementia HIV/AIDS ALS (amyotrophic lateral sclerosis) You do not need to give up your doctor or your treatments to get palliative care.

31

Impact of an oncology palliative care clinic on access to home care services.  

PubMed

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

2013-08-01

32

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

ERIC Educational Resources Information Center

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.

2012-01-01

33

Palliative Care in Cancer  

Cancer.gov

A fact sheet that describes the role of palliative care, which is comfort care given to a patient who has a serious or life-threatening disease, such as cancer, from the time of diagnosis and throughout the course of illness.

34

Turkish healthcare professionals' views on palliative care.  

PubMed

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

Turgay, Gulay; Kav, Sultan

2012-01-01

35

Center to Advance Palliative Care  

MedlinePLUS

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36

Pediatric palliative care  

PubMed Central

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

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

2008-01-01

37

[Palliative care in cardiology].  

PubMed

Palliative care is a subject which is not often broached in cardiology. Its development comes up against several difficulties. It is intended for patients suffering from heart failure and requires efficient and coherent communication between all the caregivers, the patient and his close relatives, in line with the principle of good treatment. PMID:21919294

Thoré, Véronique; Champion, Christine

2011-06-01

38

Palliative Care Education and  

E-print Network

today have very little, if any, training in the core precepts of pain and symptom man- agement causes of distress, psychosocial and spiritual assessment, ethical and cultural issues, palliative care in geriatric and pediatric populations, depression, and bereavement); teach about communication at the end

Goodrich, Lisa V.

39

Palliative care and pulmonary rehabilitation.  

PubMed

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

2014-06-01

40

Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service  

Microsoft Academic Search

BACKGROUND: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. METHODS\\/DESIGN: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a

Irene J Higginson; Bella Vivat; Eli Silber; Tariq Saleem; Rachel Burman; Sam Hart; Polly Edmonds

2006-01-01

41

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

PubMed

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

Gallagher, Jennifer

2013-12-01

42

Evaluation of clinical pharmacy services offered for palliative care patients in Qatar.  

PubMed

Palliative care is an emerging concept in the countries of the Gulf Cooperation Council, a political and economic union of Arab states bordering the Persian Gulf, namely Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates. Clinical pharmacy services have not yet been evaluated in this region. The objectives of this study were to create a baseline inventory of clinical pharmacy interventions in palliative care and to assess the perceived importance of interventions made. This was a prospective, single-center characterization study. Interventions were documented from September 30 to December 1, 2013. They were characterized into predetermined categories and analyzed using descriptive statistics. Physician acceptance rate and intervention rate per patient were calculated. Classification categories were sent to 10 practicing pharmacists in each of Qatar and Canada, who ranked the categories on the basis of perceived importance. A total of 96 interventions were documented, giving 3 interventions per patient and an acceptance rate of 81%. Discontinuing therapy (29%), initiating therapy (25%), and provision of education/counseling (13.5%) were most common. No differences were found between rankings from pharmacists in Qatar or Canada. Clinical pharmacy interventions are frequent, and those relating to alterations in drug therapy are most common. Interventions align with the perceived importance from pharmacists in both Qatar and Canada. PMID:25076019

Wilby, Kyle John; Mohamad, Alaa Adil; AlYafei, Sumaya AlSaadi

2014-09-01

43

A Framework for Generalizability in Palliative Care  

Microsoft Academic Search

Palliative medicine has only recently joined the ranks of evidence-based medical subspecialties. Palliative medicine is a rapidly evolving field, which is quickly moving to redress its historical paucity of high-quality research evidence. This burgeoning evidence base can help support the application of evidence-based principles in palliative and hospice clinical care and service delivery. New knowledge is generally taken into practice

David C. Currow; Jane L. Wheeler; Paul A. Glare; Stein Kaasa; Amy P. Abernethy

2009-01-01

44

Modern palliative care: an exercise in prevention and partnership.  

PubMed

Palliative care is no longer solely an excercise in controlling suffering at the end of life. If we are to apply the principles of palliative care throughout the course of illness, both the culture and the organization of palliative care services must change. New partners must be enlisted in more sophisticated, increasingly academic partnerships. This change, while welcome and necessary, must come about with perservation of the core values of palliative care. PMID:15807059

MacDonald, Neil

2005-02-01

45

How to Plan Research in Palliative Care  

PubMed Central

Research in palliative care has its challenges. However, research in different aspects of palliative care is important. This paper gives simple methods of planning and conducting a research in the area of palliative care in India. PMID:21811370

Chaturvedi, Santosh K

2011-01-01

46

Navigating Tensions: Integrating Palliative Care Consultation Services into an Academic Medical Center Setting  

PubMed Central

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. PMID:21620646

Norton, Sally A.; Powers, Bethel Ann; Schmitt, Madeline H.; Metzger, Maureen; Fairbanks, Eileen; DeLuca, Jane; Quill, Timothy E.

2011-01-01

47

Developing a physicians’ palliative care pain hotline in Maryland  

Microsoft Academic Search

Physicians have had relatively little formal training in pain management and palliative care. For this reason, a telephone consultation service was offered, the physicians’ palliative care pain hotline, that would allow physicians to call a toll-free number and, within 15 minutes, speak to a board-certified physician in hospice and palliative medicine. To our knowledge, this is the first program of

F. Michael Gloth; Jack Schwartz

2000-01-01

48

Palliative care situation in Palestinian Authority.  

PubMed

Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service available for cancer patients or their families, absence of organizations strategic planning for palliative care, No presence of educational resources for palliative care, No presence of communication or consultation to the clergy man, Absence of bereavement support group, no active follow up for the patient and the family, no standards for palliative care service or training programs in palliative care, no home care service for palliative care, absence of community awareness for palliative care And Absence of national standard for palliative care. The recommendations that we can conclude, depending on the needs assessment that we did, and according to the recommendations that come up through the workshop that was organized by Al-Sadeel Society and was attended by key personnel from the Palestinian MOH who summarized the conclusion, are as follows: 1.?The need for better quality care for the cancer patient.2.?The need for training of health professionals in palliative care.3.?The importance of networking and cooperation between the national NGO's and the MOH.4.?The need for public awareness regarding the early detection for cancer especially breast cancer.5.?The need for national policy and standards for palliative care and opioids legislations.6.?The importance of base line data and research. 7.?The need for interdisciplinary team work in the issue of cancer. 8.?To involve palliative care education within the curriculum of schools of health professions. PMID:21448041

Shawawra, Mousa; Khleif, Amal Dweib

2011-04-01

49

Palliative care in the intensive care unit.  

PubMed

Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of life-sustaining measures provided in the intensive care setting. The integration of palliative care into the intensive care unit (ICU) provides care, comfort, and planning for patients, families, and the medical staff to help decrease the emotional, spiritual, and psychological stress of a patient's death. Quality measures for palliative care in the ICU are discussed along with case studies to demonstrate how this integration is beneficial for a patient and family. Integrating palliative care into the ICU is also examined in regards to the complex adaptive system. PMID:25438896

Restau, Jame; Green, Pamela

2014-12-01

50

Palliative Care Hospitalists and Intensivists  

E-print Network

into their clinical practices a palliative approach to: multiple common symptoms in advanced illness; diverse diseases pain management and proper use of opioids into clinical practice. Who Should Attend? Hospitalists Institute, Department of Psychosocial Oncology and Palliative Care Attendance is limited to 120 participants

Goodrich, Lisa V.

51

Training Physicians in Palliative Care.  

ERIC Educational Resources Information Center

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.

1999-01-01

52

Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners  

PubMed Central

Background Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care. Methods Cross-national retrospective study. Over two years (2009–2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (?18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded. Results We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care. Conclusions Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies. PMID:24386381

Pivodic, Lara; Pardon, Koen; Van den Block, Lieve; Van Casteren, Viviane; Miccinesi, Guido; Donker, Gé A.; Alonso, Tomás Vega; Alonso, José Lozano; Aprile, Pierangelo Lora; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc

2013-01-01

53

The quality imperative for palliative care.  

PubMed

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

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

2015-02-01

54

[Assessment of our home care and home palliative care].  

PubMed

We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff. PMID:25595087

Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu

2014-12-01

55

Planning elderly and palliative care in Montenegro  

PubMed Central

Introduction Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management. PMID:19513178

McCarthy, Mark; Brajovic, Mina

2009-01-01

56

Complementary therapy and support services for formal and informal caregivers in Italian palliative care hospices: an exploratory and descriptive study  

Microsoft Academic Search

Purpose  The present study is aimed to assess the availability and use of complementary medicine (CM) therapies in Italian palliative\\u000a care hospices, and the support services available to caregivers and hospice staff.\\u000a \\u000a \\u000a \\u000a \\u000a Methods  A national sample of 30 hospices meeting study criteria provided data by means of telephone interviews.\\u000a \\u000a \\u000a \\u000a Results  All hospices offered spiritual assistance and at least one other form of CM,

Monia Belletti; Luca Mallia; Fabio Lucidi; Simona Reichmann; Chiara Mastroianni; Maria Grazia De Marinis; Giuseppe Casale

57

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

PubMed

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

2014-01-01

58

[Changing the collective impression of palliative care].  

PubMed

The general public and health professionals may have a mistaken impression of palliative care and the Leonetti law. Thanks to training and information on the measures taken by the government with regard to the development of palliative care, the palliative culture is gradually becoming integrated into healthcare structures and mentalities. PMID:22003790

de la Brière, Alice; Tocheport, Pascale

2011-09-01

59

Music therapy in palliative care.  

PubMed Central

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

Munro, S.; Mount, B.

1978-01-01

60

Surgical palliative care in Haiti.  

PubMed

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

2011-04-01

61

Conceptual Models for Integrating Palliative Care at Cancer Centers  

PubMed Central

Abstract Palliative care programs are rapidly evolving in acute care facilities. Increased and earlier access has been advocated for patients with life-threatening illnesses. Existing programs would need major growth to accommodate the increased utilization. The objective of this review is to provide an update on the current structures, processes, and outcomes of the Supportive and Palliative Care Program at the University of Texas M.D. Anderson Cancer Center (UTMDACC), and to use the update as a platform to discuss the challenges and opportunities in integrating palliative and supportive services in a tertiary care cancer center. Our interprofessional program consists of a mobile consultation team, an acute palliative care unit, and an outpatient supportive care clinic. We will discuss various metrics including symptom outcomes, quality of end-of-life care, program growth, and financial issues. Despite the growing evidence to support early palliative care involvement, referral to palliative care remains heterogeneous and delayed. To address this issue, we will discuss various conceptual models and practical recommendations to optimize palliative care access. PMID:22925157

Hui, David

2012-01-01

62

Growing Pains: Palliative Care Making Gains  

Cancer.gov

Palliative care has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care. The availability and role of palliative care varies tremendously, but acceptance among oncologists and other clinicians has never been greater.

63

Palliative Dental Care- A Boon for Debilitating  

PubMed Central

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

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

2014-01-01

64

Palliative Care for the Older Patient  

PubMed Central

Many older individuals living in long-term care facilities or in the community develop illnesses for which palliative care is appropriate. There are different approaches for providing such care within institutions, each with its own positive and negative attributes. Whichever formula or combinations of design are chosen, it is important to define the parameters by which patients are admitted to palliative care programs to make sure that their needs are met and that the program is as effective as possible. PMID:21221305

Gordon, Michael; Gutman, Ed

1992-01-01

65

Surgical palliative care: recent trends and developments.  

PubMed

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

2012-03-01

66

Surgical palliative care: recent trends and developments.  

PubMed

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

2011-04-01

67

The benefits of rehabilitation for palliative care patients.  

PubMed

Palliative care requires an interdisciplinary team approach to provide the best care for patients with life-threatening illnesses. Like palliative medicine, rehabilitation also uses an interdisciplinary approach to treating patients with chronic illnesses. This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives. PMID:24301083

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

2015-02-01

68

[Introduction to palliative care for the oncologist-history and basic principles of palliative care].  

PubMed

The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system. PMID:20948245

Shima, Yasuo

2010-10-01

69

Parenting and palliative care in paediatric oncology  

Microsoft Academic Search

Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better understanding of parenting, parental care-giving and decision-making and of the professional caregivers’ role

M. C. Kars

2012-01-01

70

Impact of supervised drug consumption services on access to and engagement with care at a palliative and supportive care facility for people living with HIV/AIDS: a qualitative study  

PubMed Central

Introduction Improvements in the availability and effectiveness of highly active antiretroviral therapy (HAART) have prolonged the lives of people living with HIV/AIDS. However, mortality rates have remained high among populations that encounter barriers to accessing and adhering to HAART, notably people who use drugs. This population consequently has a high burden of illness and complex palliative and supportive care needs, but is often unable to access these services due to anti-drug policies and discrimination. In Vancouver, Canada, the Dr. Peter Centre (DPC), which operates a 24-bed residential HIV/AIDS care facility, has sought to improve access to palliative and supportive care services by adopting a comprehensive harm reduction strategy, including supervised injection services. We undertook this study to explore how the integration of comprehensive harm reduction services into this setting shapes access to and engagement with care. Methods Qualitative interviews were conducted with 13 DPC residents between November 2010 and August 2011. Interviews made use of a semistructured interview guide which facilitated discussion regarding how the DPC Residence's model of care (a) shaped healthcare access, (b) influenced healthcare interactions and (c) impacted drug use practices and overall health. Interview transcripts were analysed thematically. Results Participant accounts highlight how the harm reduction policy altered the structural-environmental context of healthcare services and thus mediated access to palliative and supportive care services. Furthermore, this approach fostered an atmosphere in which drug use could be discussed without the risk of punitive action, and thus increased openness between residents and staff. Finally, participants reported that the environmental supports provided by the DPC Residence decreased drug-related risks and improved health outcomes, including HAART adherence and survival. Conclusions This study highlights how adopting comprehensive harm reduction services can serve to improve access and equity in palliative and supportive care for drug-using populations. PMID:24629844

McNeil, Ryan; Dilley, Laura B; Guirguis-Younger, Manal; Hwang, Stephen W; Small, Will

2014-01-01

71

Palliative care in Africa: a global challenge  

PubMed Central

We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said ‘in the middle of difficulty lies opportunity’ and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems.

Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare

2014-01-01

72

Young adult palliative care: challenges and opportunities.  

PubMed

Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult. PMID:24198063

Clark, Jennifer K; Fasciano, Karen

2015-02-01

73

The National Palliative Care Research Center and the Center to Advance Palliative Care: a partnership to improve care for persons with serious illness and their families.  

PubMed

The elimination of suffering and the cure of disease are the fundamental goals of medicine. While medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families. Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. Yet, multiple studies over the past decade suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems. Palliative care is interdisciplinary care focused on relief of pain and other symptoms and support for best possible quality of life for patients with serious illness, and their families. It is appropriate at the point of diagnosis of a serious illness. It goes beyond hospice care to offer patients and their families treatments focused on improving quality of life while they are receiving life-prolonging and curative treatments. Palliative care programs have been shown to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services. In the last 5 years alone the number of palliative care programs has more than doubled. This growth is in response to the increasing numbers and needs of Americans living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families. In order to ensure that all persons with serious illness and their families receive the quality of care they deserve, palliative care must become an integral part of the U.S. healthcare landscape. Specifically, persons facing serious illness and their families must know to request palliative care, medical professionals must have the knowledge and skills to provide palliative care, and hospitals and other healthcare institutions must be equipped to deliver and support palliative care services. The Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) are accomplishing this three-part mission by working in partnership to: 1) Develop research to serve as the knowledge base for quality clinical care and the foundation on which to build palliative care programs and systems; 2) Disseminate this knowledge to patients, families, professionals, and institutions throughout the United States and ensure that it is integrated within mainstream healthcare; and 3) Influence and collaborate with policy makers , regulatory bodies, and federal funding agencies to ensure that the healthcare infrastructure supports the continued growth and development of palliative care. PMID:21952569

Morrison, R Sean; Meier, Diane E

2011-10-01

74

Do rural primary health care nurses feel equipped for palliative care?  

PubMed

Community primary health care nurses in rural and remote settings are required to provide palliative care as part of their generalist role. They have limited access to specialist medical and nursing support and sometimes there are no resident GPs. A study consisting of a mailed survey and follow-up interviews was conducted to explore the experiences of these nurses and to determine how personally and professionally equipped they felt for palliative care service provision. Most participants were registered nurses experienced in nursing and in rural and remote settings, who juggled multiple generalist work roles. They had only occasional palliative care patients, and more than half had provided palliative care for a friend or family member. Some nurses found palliative care rewarding, others preferred not to have to do it. However, even those who did not enjoy working with palliative care patients often went beyond the 'call of duty' to support a home death if that was what the patient wanted. Three-quarters had attended palliative care education in the last 2 years but 88% wanted more education. Barriers to education included competing work roles, work load, geographical isolation and lack of backfill. Support from managers and peers was considered important, as was accessing timely and relevant clinical support. PMID:22950894

Cumming, M; Boreland, F; Perkins, D

2012-01-01

75

Palliative Care Nursing Interventions in Thailand  

PubMed Central

Purpose This study aimed to describe the nursing interventions that nurses in Thailand identify as most important in promoting dignified dying. Design This study used a cross-sectional descriptive design. Method A total of 247 Thai nurses completed a paper-and-pencil survey written in Thai. The survey included both demographic questions and palliative care interventions, listed with summative rating scales, from the International Classification for Nursing Practice (ICNP) catalogue Palliative Care for Dignified Dying. Descriptive statistics were used to analyze the data. Findings The five most important nursing interventions to promote dignified dying, ranked by average importance rating, were (a) maintain dignity and privacy, (b) establish trust, (c) manage pain, (d) establish rapport, and (e) manage dyspnea. Conclusions This research identified the palliative care nursing interventions considered most important by nurses in Thailand to promote dignified dying. Implications for Practice The ICNP catalogue Palliative Care for Dignified Dying can be used for planning and managing palliative nursing care in Thailand. PMID:24014487

Doorenbos, Ardith Z.; Juntasopeepun, Phanida; Eaton, Linda H.; Rue, Tessa; Hong, Elizabeth; Coenen, Amy

2013-01-01

76

Facilitating the provision of quality spiritual care in palliative care.  

PubMed

In 1948, Dame Cicely Saunders, the founder of the modem hospice movement, established a core principle of palliative care, Total Pain, which is defined as physical, spiritual, psychological, and social suffering. In 2009, a consensus panel (Puchalski, Ferrell, Virani, Otis-Green, Baird, Bull, et al., 2009) was convened to address the important issue of integrating spirituality in palliative care, which led to renewed efforts to focus on spiritual care as a critical component of quality palliative care. This project is a combination of advocacy for the importance of spiritual care, training chaplains, seminarians, community clergy, and healthcare professionals in palliative care, and creating a spiritual care curriculum which can be self-taught or taught to members of transdisciplinary teams. PMID:23977777

Bodek, Hillel

2013-01-01

77

Palliative Care Hospitalists and Intensivists  

E-print Network

of life. · Integrate into their clinical practices a palliative approach to: multiple common symptoms in the hospital. · Incorporate effective pain management and proper use of opioids into clinical practice.* Who in clinical practice support this goal, as do worksho

Chou, James

78

Practical Aspects of Palliative Care  

E-print Network

. Smith, MD, MPH Assistant Professor of Medicine, Division of Geriatrics, UCSF School of Medicine Staff Physician, San Francisco Veterans Affairs Medical Center Founder of GeriPal: A Geriatrics and Palliative approaches to working with diverse patient populations (e.g., pediatrics, geriatrics), different diseases (e

Goodrich, Lisa V.

79

URMC Palliative Care Fellowship OVERALL EDUCATIONAL GOALS OF THE FELLOWSHIP PROGRAM  

E-print Network

-threatening medical illnesses. 4. Learn the role of the interdisciplinary team, and what qualities help a team work of palliative care to trainees and learn from members of the interdisciplinary team. 12. Critically evaluate on the inpatient consultation service. Other team members include 2 palliative care nurse practitioners, medicine

Goldman, Steven A.

80

Five policies to promote palliative care for patients with ESRD.  

PubMed

Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure. PMID:23744000

Tamura, Manjula Kurella; Meier, Diane E

2013-10-01

81

Gabapentin for Intractable Hiccups in Palliative Care  

Microsoft Academic Search

Intractable hiccups are not common in the general population or in the palliative care population but can adversely impact quality of life and cause other complications such as weight loss and sleep disturbance. Many treatments have been proposed for intractable hiccups, but there is little consensus regarding treatment in the medical literature. This is partly because hiccups are relatively uncommon

Monica L. Tegeler; Steven J. Baumrucker

2008-01-01

82

Supportive and Palliative Care Clinical Trials  

Cancer.gov

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.

83

About Supportive and Palliative Care Research  

Cancer.gov

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.

84

Palliative Care: What You Should Know  

MedlinePLUS

... include cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer’s, HIV/AIDS, amyotrophic lateral sclerosis (ALS), multiple sclerosis and more. Palliative care can be provided at any stage of illness and along with treatment meant to cure you. 5 ? You can expect relief from symptoms ...

85

Depression in palliative care: a pragmatic report from the Expert Working Group of the European Association for Palliative Care  

Microsoft Academic Search

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

2001-01-01

86

A generative response to palliative service capacity in Canada  

Microsoft Academic Search

Purpose – This paper situates a large-scale learning and service development capacity-building initiative for hospice palliative care services within the current Canadian policy context for use by international readers. Design\\/methodology\\/approach – In 2000 a national initiative using action research as its design was crafted to support continuing professional development and knowledge management in primary-health care environments. Findings – The Canadian

Michael Aherne; José Pereira

2005-01-01

87

Elements of effective palliative care models: a rapid review  

PubMed Central

Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia’s health system. PMID:24670065

2014-01-01

88

Advance directives in action in a regional palliative care service: "road testing" the provisions of the Medical Treatment Act 1988 (VIC).  

PubMed

In order to explore the usefulness and acceptability of the provisions of the Medical Treatment Act 1988 (Vic) for palliative care patients in a rural region in Victoria, Australia, between July and December 2004 patients were given information explaining the Act and the opportunity to discuss it with the research officer. Grounded theory methodology was used to evaluate client responses. Findings suggested that palliative care patients are willing to engage in advance care planning but they have to be well enough and need skilled, practical, face-to-face assistance to complete the required legal forms. Written materials alone are not adequate, but provide the opportunity for medical staff to have conversations about death and dying. Doctors and nurses should understand the provisions of the Act to assist patients and families. It is recommended that advance care planning, appropriate to the jurisdiction, be an integral part of the palliative care assessment process. PMID:16304759

Brown, Margaret; Fisher, John W; Brumley, David J; Ashby, Michael A; Milliken, Jan

2005-11-01

89

Palliative Wound Care at the End of Life  

Microsoft Academic Search

Wound care, a form of palliative care, supports the health care needs of dying patients by focusing on alleviating symptoms. Although wound care can be both healing and palliative, it can impair the quality of the end of life for the dying if it is done without proper consideration of the patient’s wishes and best interests. Wound care may be

Ronda G. Hughes; Alexis D. Bakos; Ann O’Mara; Christine T. Kovner

2005-01-01

90

West Virginia Palliative Care Network 2011 Audio Conference Series  

E-print Network

West Virginia Palliative Care Network 2011 Audio Conference Series Target Audience - These courses care clinicians who wish to expand their knowledge of end-of-life care. Course Description - Hospital palliative care consultation teams have been shown to improve care for patients with serious illness

Mohaghegh, Shahab

91

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

PubMed Central

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

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

1998-01-01

92

Palliative care in patients with multiple sclerosis.  

PubMed

Multiple Sclerosis (MS) is an inflammatory demyelinating disease of the central nervous system (CNS) and can be characterized by acute exacerbations or gradual worsening of neurological function and disability. The course of the disease is highly variable and unpredictable, however, there are short and long-term favorable and unfavorable predictive factors, which may provide some information about the future pattern of the disease. Palliative care in MS is directed at symptom management, psychosocial support, and rehabilitation. The goal in palliative care is to achieve a high quality of life. The disease modifying agents, interferon beta, Glatiramer acetate and Mitoxantrone are the mainstay of treatment in MS. Symptomatic relief and counseling of patients with MS have a strong impact on quality of life. PMID:11854101

Ben-Zacharia, A B; Lublin, F D

2001-11-01

93

Clinical Trials for Supportive and Palliative Care  

Cancer.gov

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.

94

Palliative care in amyotrophic lateral sclerosis  

Microsoft Academic Search

The poor prognosis of amyotrophic lateral sclerosis (ALS) makes palliative care a challenge for the neurologist. Most disabilities\\u000a associated with progressive disease can be ameliorated by symptomatic treatment. Prognosis and treatment options should be\\u000a openly discussed with the patient and his\\/her relatives. Nutritional deficiency due to pronounced dysphagia can be efficiently\\u000a relieved by a percutaneous enterogastrostomy. Respiratory insufficiency can be

Gian Domenico Borasio; Raymond Voltz

1997-01-01

95

[Paediatric palliative care in Denmark should be strengthened.  

PubMed

Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family. PMID:25353997

Jespersen, Bodil Abild; Clausen, Niels; Sjøgren, Per

2014-10-27

96

Characteristics of Emergency Department Patients Who Receive a Palliative Care Consultation  

PubMed Central

Abstract Background A large gap exists between the practice of emergency medicine and palliative care. Although hospice and palliative medicine has recently been recognized as a subspecialty of emergency medicine, few palliative care teams routinely interact with emergency providers, and primary palliative care skills among emergency providers are lacking. Objective To identify the proportion and characteristics of patients who receive a palliative care consultation and arrive via the emergency department (ED). Methods A descriptive study of adult ED patients from an urban, academic tertiary care hospital who received a palliative care consultation in January 2005 or January 2009. Results In January 2005, 100 of the 161 consults (62%) arrived via the ED versus 63 of 124 consults (51%) in January 2009 (p=0.06). Mean days from admission to consultation in January 2005 were six days (standard deviation 11), versus nine days (SD 26) in January 2009 (p=0.35). Three of the 100 consultations (3%) in January 2005 were initiated in the ED, versus 4 of the 64 (6%) in January 2009. Conclusions At an urban academic medical center with a well-developed palliative care service, the majority of palliative care consultations were for patients who arrive via the ED. Despite this, only a small minority of consultations originated from emergency providers and consultation was on average initiated days into a patient's hospital stay. PMID:22468771

Hwang, Ula; Cohen, Jason A.; Fischman, Michael; Morrison, R. Sean

2012-01-01

97

Palliative Care in the Emergency Department  

PubMed Central

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

Mierendorf, Susanne M; Gidvani, Vinita

2014-01-01

98

Palliative care in patients with lung cancer  

PubMed Central

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

Farbicka, Paulina

2013-01-01

99

Palliative care: a challenge for orthopaedic nursing care.  

PubMed

Patients who face chronic, incurable, or life-ending musculoskeletal conditions often receive inadequate care either due to a lack of caregiver awareness or inattention to maintaining the highest quality at the end of life. Palliative care focuses on the comprehensive physical, psychological, social, spiritual, and existential needs of patients with life-threatening or debilitating illness. Orthopaedic nurses and all nurses in general are challenged to incorporate palliative care principles into care planned with patients and families facing end-of-life issues. This article addresses the leadership role the National Association of Orthopaedic Nurses (NAON) has taken to develop a consensus document which endorses the Last Acts Precepts of Palliative Care and affirms the need for palliative care with patients who experience life-threatening illness. A case study is used to illustrate the opportunity a multidisciplinary team has to center care on the individual, while remaining sensitive to the holistic needs of the patient for self-determination at the end of life. PMID:15722965

Watters, Carol L; Harvey, Carol V; Meehan, Anita J; Schoenly, Lorry

2005-01-01

100

Palliative wound care, part 2: application of principles.  

PubMed

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

2014-04-01

101

[Chronic uremia and palliative care].  

PubMed

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

2014-01-01

102

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

MedlinePLUS

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

103

Palliative care in long-term care: a system in change.  

PubMed

The provision of palliative care for older people within the next decade will need to be substantially different to that provided today. In long-term care settings the achievement of quality palliative care will require attention to all levels of the health and social care system, in both its formal and informal manifestations. We suggest that long-term care facilities will become the hospices of the future, caring for older people with chronic conditions with a long trajectory to death, the most common being dementia. We see this progression as inevitable and appropriate if the right support is provided. We discuss the impact that transferability and sustainability has had on the present provision of palliative care for older people and how that may affect the future. Four forces which are important factors in public policy; leadership, a culture that supports learning throughout the care process, an emphasis on effective team development and the use of information technologies for quality activities are used as a framework for our vision of social planning. We then go on to discuss the impact of costs, workforce, service planning and public awareness as vital areas where progress needs to be carefully tackled. We suggest some likely poor outcomes if this planning does not occur, but indicate that if planning and implementation is effective then services can provide the kind of care the baby boomer generation seeks. PMID:20925730

Abbey, Jennifer; Froggatt, K A; Parker, Deborah; Abbey, Brian

2006-03-01

104

Palliative medicine teaching program at the University of Cape Town: integrating palliative care principles into practice.  

PubMed

The article describes the development of the postgraduate palliative medicine programs at the University of Cape Town (UCT) through collaboration with the Palliative Medicine Division from the University of Wales College of Medicine in Cardiff, United Kingdom. The course is presented as a distance-learning program supported by web-based learning with three face-to-face teaching sessions during the course. UCT recognized the urgent need to assist African doctors in developing the medical skills required to care for an ever-increasing population of patients and their families who are faced with terminal illness and the physical, emotional, psychosocial, and spiritual distress associated with end-of-life issues. Since 2001, 139 postgraduate students have registered for the course, 10% of whom are from African countries other than South Africa. Using the experience from UCT in distance-learning programs, the Hospice Palliative Care Association developed an interdisciplinary course, "Introduction to Palliative Care." This course recognizes that, although improvement in patient care and palliative care will come as undergraduate training in palliative care is established, it is essential that previously qualified health care professionals are able to enhance their palliative care knowledge, skills, and attitudes. Trainers provide support to participants over a six-month period and assist in the transference of knowledge and skills into the workplace. PMID:17482047

Gwyther, Liz; Rawlinson, Fiona

2007-05-01

105

Leveraging External Resources To Grow and Sustain Your Palliative Care Program: A Call to Action  

PubMed Central

Abstract Hospital-based palliative care is becoming increasingly prevalent. There is growing evidence that it is having a positive impact on patients and their loved ones. In 2008, national data indicated that 58.5% of hospitals with 50 or more beds had a palliative care program. Data from a 2008 survey of California acute care hospitals showed that although 33% of sites had inpatient consultation services, one in five had been operational for only one year. As nascent palliative care programs grow, new issues arise and needs and plans change. Just as palliative care programs benefit from marketing and education plans, they also benefit from a plan to leverage external resources. Largely a missed opportunity, external resources such as organizations, networks, and experts can help palliative care service (PCS) leaders and team members gain information on everything from best practices to funding opportunities, while serving as sources for personal and professional support. The growing number of active PCSs and the increasing availability of support and expertise ensure that new programs no longer have to face challenges alone. Further, the steady increase in the number of new programs has created opportunities for those who are more experienced to serve as mentors for peers who are navigating the challenges of growing and sustaining a clinical service. The authors encourage both mentors and mentees to seek support from or provide support to others in the field. Leveraging the collective expertise and experiences in our field can ensure that palliative care continues to thrive and grow. PMID:22165898

Kerr, Kathleen M.; Kutner, Jean S.; Ferris, Frank D.; Rathfon, Megan A.; Rabow, Michael W.

2012-01-01

106

Current Status of Palliative Care, Education, and Research  

PubMed Central

Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. PMID:19729681

Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.

2010-01-01

107

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

MedlinePLUS

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

108

Research Priorities in Geriatric Palliative Care: Policy Initiatives  

PubMed Central

Abstract Coordinated palliative care matched to patient needs improves quality of care for vulnerable patients with serious illness and reduces costly use of hospitals and emergency departments. Unfortunately, there is a disconnect in translating geriatric palliative care models and principles into policy and widespread practice. Gaps in policy-relevant research are addressed, including implementation strategies to scale up existing care models, the role of palliative care and geriatrics in health care payment reform efforts, development of quality measures for complex patients, strategies to address workforce shortages, and an approach to hospice reform. PMID:24147877

Unroe, Kathleen T.

2013-01-01

109

Principles of skin and wound care: the palliative approach  

Microsoft Academic Search

The term 'palliative care' is used to describe care given to patients with advanced, life-limiting illness of any aetiology. It is a philosophy of care that is patient and family-centred, designed to meet the needs of the patient and family. Wound care for palliative care patients should be managed so that patient and family needs\\/concerns are the main focus of

Jane McManus

110

Ethical issues in palliative care: considerations.  

PubMed

Discussions on ethics in palliative care often concentrate on issues like patient autonomy or euthanasia. However, the reality in the developing world begs discussion on an entirely different set of problems altogether. One should have a good death, no doubt, but one should also have an opportunity for a good life. Globalization unfortunately seems to worsen many of the burdens of the developing world, like the negative influence of the mighty pharmaceutical industry. Continuing medical education offered only by the pharmaceutical industry instills bias into the minds of most medical professionals. Prescription practices by many professionals are influenced by the industry; so much so, inexpensive drugs or formulations are abandoned in favor of expensive ones, adding to the burden of a much-suffering individual. Palliative care should have been a major force against such evils, but it seems to get more clinical and institutionalized with time, with the social issues taking a back seat. Unethical research practices and preferential treatment in drug availability are practices that continue to marginalize the less privileged. Adoption of the dominant ideology from the West in the developing world also raises problems like cultural unsuitability. Considering that the bulk of the suffering in the world is in poorer countries, these issues need to be addressed. PMID:15022958

Manima, Abdulla

2003-01-01

111

Kampo medicine for palliative care in Japan.  

PubMed

Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumors in a dose-dependent manner and contributes to long-term survival. Hochuekkito has clinical effects on cachexia for genitourinary cancer and improves the QOL and immunological status of weak patients, such as postoperative patients. Daikenchuto increases intestinal motility and decreases the postoperative symptoms of patients with total gastrectomy with jejunal pouch interposition, suppresses postoperative inflammation following surgery for colorectal cancer, and controls radiation-induced enteritis. Rikkunshito contributes to the amelioration of anorectic conditions in cancer cachexia-anorexia syndrome. Goshajinkigan and Shakuyakukanzoto reduce the neurotoxicity of patients with colorectal cancer who undergo oxaliplatin and FOLFOX (5-fluorouracil/folinic acid plus oxaliplatin) therapy. Hangeshashinto has the effect of preventing and alleviating diarrhea induced by CPT-11(irinotecan) and combination therapy with S-1/CPT-11. O'rengedokuto significantly improves mucositis caused by anticancer agents. PMID:24447861

Okumi, Hirokuni; Koyama, Atsuko

2014-01-01

112

Kampo medicine for palliative care in Japan  

PubMed Central

Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumors in a dose-dependent manner and contributes to long-term survival. Hochuekkito has clinical effects on cachexia for genitourinary cancer and improves the QOL and immunological status of weak patients, such as postoperative patients. Daikenchuto increases intestinal motility and decreases the postoperative symptoms of patients with total gastrectomy with jejunal pouch interposition, suppresses postoperative inflammation following surgery for colorectal cancer, and controls radiation-induced enteritis. Rikkunshito contributes to the amelioration of anorectic conditions in cancer cachexia-anorexia syndrome. Goshajinkigan and Shakuyakukanzoto reduce the neurotoxicity of patients with colorectal cancer who undergo oxaliplatin and FOLFOX (5-fluorouracil/folinic acid plus oxaliplatin) therapy. Hangeshashinto has the effect of preventing and alleviating diarrhea induced by CPT-11(irinotecan) and combination therapy with S-1/CPT-11. O’rengedokuto significantly improves mucositis caused by anticancer agents. PMID:24447861

2014-01-01

113

Parkinson's disease, palliative care and older people: Part 1.  

PubMed

In the first of two articles on palliative care for people with Parkinson's disease, the authors revise the common features of the disease, its different stages and the nature of palliative care for people who suffer from it. Next month, they consider management of common problems in late-stage Parkinson's and various ethical issues that nurses may encounter. PMID:15045859

Thomas, Sue; MacMahon, Doug

2004-03-01

114

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

PubMed Central

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

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

2014-01-01

115

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

PubMed

This article describes a pilot model to increase palliative care (PC) knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential PC needs. Thirty health care providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. Palliative Performance Scale implementation added little burden on nurses and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent and resulted in targeted discussions about PC needs without generating additional burden on our PC consult service. This model shows promise for enhancing collaborative patient care and access to PC. PMID:24280188

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

2015-02-01

116

Quality palliative care for cancer and dementia in five European countries: some common challenges  

PubMed Central

Objectives There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. PMID:24131061

Davies, Nathan; Maio, Laura; van Riet Paap, Jasper; Mariani, Elena; Jaspers, Birgit; Sommerbakk, Ragni; Grammatico, Daniela; Manthorpe, Jill; Ahmedzai, Sam; Vernooij-Dassen, Myrra; Iliffe, Steve

2013-01-01

117

Palliative care and prehospital emergency medicine: analysis of a case series.  

PubMed

Palliative care, which is intended to keep patients at home as long as possible, is increasingly proposed for patients who live at home, with their family, or in retirement homes. Although their condition is expected to have a lethal evolution, the patients-or more often their families or entourages-are sometimes confronted with sudden situations of respiratory distress, convulsions, hemorrhage, coma, anxiety, or pain. Prehospital emergency services are therefore often confronted with palliative care situations, situations in which medical teams are not skilled and therefore frequently feel awkward.We conducted a retrospective study about cases of palliative care situations that were managed by prehospital emergency physicians (EPs) over a period of 8 months in 2012, in the urban region of Lausanne in the State of Vaud, Switzerland.The prehospital EPs managed 1586 prehospital emergencies during the study period. We report 4 situations of respiratory distress or neurological disorders in advanced cancer patients, highlighting end-of-life and palliative care situations that may be encountered by prehospital emergency services.The similarity of the cases, the reasons leading to the involvement of prehospital EPs, and the ethical dilemma illustrated by these situations are discussed. These situations highlight the need for more formal education in palliative care for EPs and prehospital emergency teams, and the need to fully communicate the planning and implementation of palliative care with patients and patients' family members. PMID:25437023

Carron, Pierre-Nicolas; Dami, Fabrice; Diawara, Fatoumata; Hurst, Samia; Hugli, Olivier

2014-11-01

118

Progress in palliative care in Israel: comparative mapping and next steps  

PubMed Central

Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs. PMID:22913773

2012-01-01

119

Palliative and supportive care for glioma patients.  

PubMed

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

Walbert, Tobias; Chasteen, Kristen

2015-01-01

120

Meaning and Practice of Palliative Care for Hospitalized Older Adults with Life Limiting Illnesses  

PubMed Central

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. PMID:21584232

Powers, Bethel Ann; Norton, Sally A.; Schmitt, Madeline H.; Quill, Timothy E.; Metzger, Maureen

2011-01-01

121

Improving the evidence base in palliative care to inform practice and policy: thinking outside the box.  

PubMed

The adoption of evidence-based hierarchies and research methods from other disciplines may not completely translate to complex palliative care settings. The heterogeneity of the palliative care population, complexity of clinical presentations, and fluctuating health states present significant research challenges. The aim of this narrative review was to explore the debate about the use of current evidence-based approaches for conducting research, such as randomized controlled trials and other study designs, in palliative care, and more specifically to 1) describe key myths about palliative care research; 2) highlight substantive challenges of conducting palliative care research, using case illustrations; and 3) propose specific strategies to address some of these challenges. Myths about research in palliative care revolve around evidence hierarchies, sample heterogeneity, random assignment, participant burden, and measurement issues. Challenges arise because of the complex physical, psychological, existential, and spiritual problems faced by patients, families, and service providers. These challenges can be organized according to six general domains: patient, system/organization, context/setting, study design, research team, and ethics. A number of approaches for dealing with challenges in conducting research fall into five separate domains: study design, sampling, conceptual, statistical, and measures and outcomes. Although randomized controlled trials have their place whenever possible, alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. Therefore, this article highlights "outside the box" approaches that would benefit both clinicians and researchers in the palliative care field. Ultimately, the selection of research designs is dependent on a clearly articulated research question, which drives the research process. PMID:24727305

Aoun, Samar M; Nekolaichuk, Cheryl

2014-12-01

122

A palliative care hotline for multiple sclerosis: A pilot feasibility study.  

PubMed

Objective: Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. Method: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). Results: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. Significance of results: Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers. PMID:25192425

Knies, Andrea K; Golla, Heidrun; Strupp, Julia; Galushko, Maren; Schipper, Sabine; Voltz, Raymond

2014-09-01

123

How to provide care for patients suffering from terminal non-oncological diseases: barriers to a palliative care approach.  

PubMed

Despite the seemingly evident pertinence of palliative care for patients suffering from non-oncological long-term life-threatening diseases, everyday clinical practice is far from that assumption. This study aims to explore palliative care service provision for these patients in Spain. Patients, family caregivers and healthcare professionals were interviewed, individually or in a group, aiming at identifying barriers in the provision of care and strategies to overcome them. Ritchie and Spencer's framework was used for data analysis. The barriers identified were as follows: lack of clarity about prognosis, the hegemony of the curative approach, avoiding words and the desire to cheat death. Provision of palliative care services for these patients should be guided by the characteristic trajectory of each type of disease. Even if healthcare systems were capable of providing specialized palliative care services to this large group of patients, other barriers should not be overlooked. It would then seem appropriate to provide therapeutic and palliative care simultaneously, thus facilitating adaptation processes for both patients and relatives. PMID:20817747

Mahtani-Chugani, Vinita; González-Castro, Inmaculada; de Ormijana-Hernández, Amaia Sáenz; Martín-Fernández, Roberto; de la Vega, Enrique Fernández

2010-12-01

124

Palliative care for end-stage heart failure  

Microsoft Academic Search

Heart failure is growing in prevalence. Despite an array of treatments targeting a complicated pathophysiology, heart failure\\u000a ultimately leads to death, and thus there is a clear need to provide palliative care to persons with end-stage heart failure.\\u000a Palliative care, or education and support of the patient and family and management of distressing symptoms, should be provided\\u000a throughout the course

Sarah J. Goodlin

2005-01-01

125

Gynaecological Malignancies from Palliative Care Perspective  

PubMed Central

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

Mishra, Kamlesh

2011-01-01

126

Palliative care for cancer patients in Sudan: an overview  

PubMed Central

Sudan is facing an increasing number of cancer patients every year, and cancer is now among the top ten killer diseases in the country. The majority of cancer patients are diagnosed with an advanced type of cancer where curative treatment has little, if any, effect. The need for palliative care (PC) is urgent. In spite of this, there is no established programme for comprehensive cancer control in the country. In this article we review the state of PC services available for cancer patients. A PC service started in 2010 as an outpatient service at the main oncology centre in Sudan. With the help of international bodies, several training activities in PC were held. Currently the service includes an outpatient clinic, a nine-bed ward, and a limited home-care service. PC has started to reach two other hospitals in the country. Unfortunately, the need is still great; the services provided are not fully supported by the hospital administration. And even now, thousands of patients outside the cities of Khartoum and Medani have no access to oral morphine.

Gafer, Nahla; Elhaj, Ahmed

2014-01-01

127

Adaptation, dissemination, and evaluation of a cancer palliative care curriculum for the Indian health system.  

PubMed

In 2006, the Indian Health Service (IHS) and the National Cancer Institute (NCI) collaborated to develop an interdisciplinary palliative training program for health professionals in the Indian health system. Their goal was to improve clinician knowledge and skills in palliative care, to train future trainers, and to increase access to palliative care for American Indians and Alaska Natives. The combined program of participant self-study utilizing a multimedia CD-ROM and train-the-trainer seminars followed the curriculum entitled Education in Palliative and End-of-Life Care for Oncology (EPEC-O) with American Indian and Alaska Native Cultural Considerations. Three seminars trained 89 interdisciplinary health providers from throughout the Indian health system. Evaluations demonstrated increased clinician self-reported knowledge and confidence to train and high satisfaction with training. Forty-two of 67 participants completed an anonymous post-conference Web questionnaire. Nearly half had conducted or definitively planned palliative education sessions, and 57 percent started new palliative services at their practice sites. PMID:20402180

Arenella, Cheryl; Finke, Bruce; Domer, Timothy; Kaur, Judith S; Merriman, Melanie P; Ousley, Anita

2010-01-01

128

Creating a research culture in a palliative care service environment: a qualitative study of the evolution of staff attitudes to research during a large longitudinal controlled trial (ISRCTN81117481).  

PubMed

This study investigated the impact of a three-year randomized control trial of different models of service provision on palliative care staff associated with the hospice where the trial was being conducted. Eleven open access de-identified qualitative focus groups were held over a period of three years: three months into the trial, one year after its inception, and at the end of the trial. Four staff groups were involved: inpatient hospice nurses, palliative care outreach nurses, medical palliative specialists, and administrative staff and social workers. Initially the impact of the trial produced high levels of staff stress which largely diminished over time, to be replaced by enthusiasm for the changes achieved and sadness that post trial the perceived benefits gained would be lost. When attempting to change a clinical culture to incorporate research, and in particular where increased staff workload is involved, highly interactive levels of communication and valuing of staff input are required to minimize the stress and burden of this imposition. PMID:18681246

Grbich, Carol; Abernethy, Amy P; Shelby-James, Tania; Fazekas, Belinda; Currow, David C

2008-01-01

129

A Qualitative Analysis of Patient and Family Perspectives of Palliative Care.  

PubMed

Abstract Background: To provide truly patient-centered palliative care services, there is a need to better understand the perspectives and experiences of patients and families. Increased understanding will provide insight into the development of health care team competencies and organizational changes necessary to improve patient care. Objective: Our aim was to explore patient and family perceptions of palliative care services at the end of life or during serious illness and to identify facilitators and barriers to receipt of palliative care services. Methods: In-depth, semi-structured patient and family interviews were conducted, transcribed, and independently reviewed using grounded theory methodology and preliminary interpretations. A combined deductive and inductive iterative qualitative approach was used to identify recurring themes. The study was conducted in a physician-led, not-for-profit, multispecialty integrated health system serving three large, western, rural states. A purposive sample of 14 individuals who received palliative care services were interviewed alone or with their families for a total of 12 interviews. Results: Presence, Reassurance, and Honoring Choices emerged as central themes linked to satisfaction with palliative care services. Themes were defined as including health care professional attributes of respect, approachability, genuineness, empathy, connectedness, compassion, sensitivity, an ability to listen, good communication, provision of information, empowerment, and timeliness. Honoring Choices included those pertaining to treatment, spirituality, and family needs. Conclusions: At end of life or during times of serious illness, patients and families identified behaviors of Presence, Reassurance, and Honoring Choices as important. According to patients/families, health care providers must be compassionate and empathetic and possess skills in listening, connecting, and interacting with patients and families. PMID:25299983

Ciemins, Elizabeth L; Brant, Jeannine; Kersten, Diane; Mullette, Elizabeth; Dickerson, Dustin

2014-10-01

130

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

PubMed

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

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

2015-03-01

131

Palliative care for Muslims and issues before death.  

PubMed

National and European directives have now enshrined within European law the requirement that healthcare professionals provide their patients with culturally appropriate and sensitive care. Although well intentioned, many health professionals find it difficult to translate these directives into practice. Barriers to providing culturally competent care include racism, institutional discrimination and gaps in our understanding of the interface between culture and health--this latter factor reflecting the lack of training in transcultural health care. In this paper, we concentrate on issues relating to the provision of palliative care near death to Muslims of South Asian origin in the UK, although much of what is said will equally be applicable to Muslims from other parts of the world. This is the first of two articles giving insights into the palliative care of Muslims. The second article 'Palliative care of Muslims and issues after death' will appear in a later issue. PMID:12514462

Gatrad, A R; Sheikh, A

2002-11-01

132

Palliative Care Integration Project (PCIP) quality improvement strategy evaluation.  

PubMed

This study evaluated the effectiveness of implementation of common assessment tools, collaborative care plans, and symptom management guidelines for cancer patients as a strategy to improve the quality, coordination, and integration of palliative care service across organizations and health care sectors. A pre-post design to measure the impact on symptom management, caregiver burden and satisfaction with care delivery, and service utilization was used. Two cohorts of eligible patients and caregivers completed Edmonton Symptom Assessment Scales, Caregiver Reaction Assessment and FAMCARE Scales and chart audits were conducted. Administrative data from each participating site were examined for utilization trends. Audits of 53 charts preimplementation and 63 postimplementation showed an increase in documentation of pain from 24.5% to 74.6% (P<0.001) of charts. Administrative data showed a decrease in the percentage of patients with at least one emergency room visit from 94.3% to 84.8% (P<0.001), in the percentage of patients with at least one admission to the acute care hospital (P<0.001), and deaths in acute care 43.1%-35.7% (P=0.133). There was minimal change in the intensity of symptoms (P=0.591), and no change in the burden on the caregiver (P=0.086) or caregiver satisfaction with care (P=0.942). This study showed that implementation of common assessment tools, collaborative care plans, and symptom management guidelines across health sectors can result in some increased documentation of symptoms and efficiencies in care. Future projects should consider imbedding a continuous quality improvement methodology and longer timelines into their projects to improve outcomes. PMID:18358693

Dudgeon, Deborah J; Knott, Christine; Eichholz, Mary; Gerlach, Jacqueline Lochhaas; Chapman, Cheryl; Viola, Raymond; Van Dijk, Janice; Preston, Sharon; Batchelor, Diane; Bartfay, Emma

2008-06-01

133

Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards.  

PubMed

Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work. PMID:24879998

Abernethy, Amy P; Capell, Warren H; Aziz, Noreen M; Ritchie, Christine; Prince-Paul, Maryjo; Bennett, Rachael E; Kutner, Jean S

2014-12-01

134

Pediatric palliative care instruction for residents: an introduction to IPPC.  

PubMed

A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain-symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience. PMID:22057208

Carter, Brian S; Swan, Rebecca

2012-08-01

135

The case for home based telehealth in pediatric palliative care: a systematic review  

PubMed Central

Background Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the electronic databases Medline, CINAHL and Google Scholar. The reference list of each paper was also inspected to identify any further studies. Results There were 33 studies that met the inclusion criteria of which only six were pediatric focussed. Outcome measures included effects on quality of life and anxiety, substitution of home visits, economic factors, barriers, feasibility, acceptability, satisfaction and readiness for telehealth. While studies generally identified benefits of using home telehealth in palliative care, the utilisation of home telehealth programs was limited by numerous challenges. Conclusion Research in this area is challenging; ethical issues and logistical factors such as recruitment and attrition because of patient death make determining effectiveness of telehealth interventions difficult. Future research in home telehealth for the pediatric palliative care population should focus on the factors that influence acceptance of telehealth applications, including goals of care, access to alternative modes of care, perceived need for care, and comfort with using technology. PMID:23374676

2013-01-01

136

Diet and Nutrition in Cancer Survivorship and Palliative Care  

PubMed Central

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

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

2013-01-01

137

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.  

PubMed

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

2013-03-01

138

What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties  

PubMed Central

Background We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. PMID:25075202

2014-01-01

139

Paediatric palliative care: development and pilot study of a ‘Directory’ of life-limiting conditions  

PubMed Central

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. PMID:24330676

2013-01-01

140

Palliative care research: trading ethics for an evidence base  

Microsoft Academic Search

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

A M Jubb

2002-01-01

141

Cultural and religious considerations in pediatric palliative care  

PubMed Central

Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care. PMID:22617619

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

2012-01-01

142

Is there a Role of Palliative Care in the Neonatal Intensive Care Unit in India?  

PubMed Central

Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies who are not going to “get better,” the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to “build a case” for palliative care in the Indian NICU setting. PMID:21976849

Dighe, Manjiri P; Muckaden, Maryann A; Manerkar, Swati A; Duraisamy, Balaji P

2011-01-01

143

The management of family conflict in palliative care  

PubMed Central

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

Lichtenthal, Wendy G.; Kissane, David W.

2013-01-01

144

Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial  

PubMed Central

Background Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients’ perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial. Methods A qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n?=?34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication. Results Three overarching themes emerged when asked whether receiving pain and palliative care services made them more likely to remain enrolled in their primary cancer clinical trial: patients’ past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams. Conclusions Our findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research. Trial registration NIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365 PMID:25276094

2014-01-01

145

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence  

PubMed Central

Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era. PMID:15681714

Harding, R; Karus, D; Easterbrook, P; Raveis, V; Higginson, I; Marconi, K

2005-01-01

146

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

PubMed

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

2014-06-01

147

A Descriptive, Retrospective Study of After-hours Calls in Hospice and Palliative Care  

PubMed Central

Aims Few studies have described after-hours calls in hospice patient care. This retrospective study examines the timing of after-hours telephone triage services; the reasons for access to after-hours hospice and palliative care services; and the predominant nursing interventions offered in after-hours calls in hospice and palliative care. Methods A fixed coding scheme was used to code a de-identified after-hours triage phone log of all calls between July 2005 and June 2006 (n=4,434) from a Pennsylvania hospice and palliative care services organization. Descriptive statistics were used to identify call timing pattern, call reasons, and predominant nursing interventions. Results Triage services were utilized most frequently to request assistance with signs and symptoms control (25.7%), report death (17.8%), and to request a home visit (15.3%). The top nursing interventions included updating case managers or supervisors about the needs of follow-up (29.5%), coordinating home visits (20.5%), and instructing caregivers or patients on how to control new signs and symptoms (19.8%). Conclusions A better understanding of when and why patients and their family caregivers utilize after-hours hospice triage services can assist in the design of future proactive interventions to improve care, and enhance training for new and existing hospice triage nurses. PMID:22773920

Jiang, Yun; Gentry, Amanda L.; Pusateri, Margaret; Courtney, Karen L.

2012-01-01

148

Treating nausea and vomiting in palliative care: a review  

PubMed Central

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

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

2011-01-01

149

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

ERIC Educational Resources Information Center

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

2011-01-01

150

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

Federal Register 2010, 2011, 2012, 2013

...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...

2012-12-26

151

Home-based palliative care for adult cancer patients in Ibadan—a three year review  

PubMed Central

Home-based palliative care is a recognised model of health service provision globally, but is just emerging in Nigeria. The aim of this study isto review the spectrum of adult cancer patients involved in home-based palliative care, the services provided, outcome and benefits. Methods Records of all adult cancer patients seen on home-based palliative care between March 2009 and January 2013 by the hospice and palliative care unit, University College Hospital (UCH), Ibadan were reviewed. Their biographical data, days on programme, diagnosis, stage of disease, major complaint, pain score, other symptoms, services offered, number of home visits, follow-up, and outcomes were extracted, reviewed, and analysed. The data were analysed using SPSS version 16.0. Results Sixty patients were enrolled during the study period: there were 20 (33.3%) males and 40 (66.7%) females out of a total of 787 patients. All of them reside within catchment area of the hospice. Breast and prostate cancer constitute 21.7% each, gastrointestinal 16.7%, liver 11.7%, and cervical cancer 10.0%. Homes were visited 1–23 times per person. Days on programme ranged from 9–1207 days (average: 286 days). Pain was reported by 52 (86.7%) with scores of 7 to10 in 26 (50.0%). Only eight (13.3%) were pain-free. Services offered included pain and other symptom control, counselling and training for carers at home, provision of funds and comfort packs, bereavement services. The cost of services was heavily subsidised by the Centre for Palliative Care, Nigeria (CPCN), a non-governmental organisation and UCH. Although all patients are now deceased, the compassionate care received at a subsidised cost was highly valued, as shown from the appreciative comments of relations and carers. Conclusion Home-based palliative care provided at low cost was beneficial to patients and their families. More can be achieved through the training of more health professionals, increased funding, and increased public awareness of the services.

Omoyeni, NE; Soyannwo, OA; Aikomo, OO; Iken, OF

2014-01-01

152

Assessment of the need for palliative care for children in South Africa.  

PubMed

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries' capacities to deliver children's palliative care (CPC). This report concerns the findings from South Africa. The study adopted a cross-sectional mixed-methods approach using both quantitative and qualitative data obtained from primary and secondary sources. CPC need was estimated using prevalence and mortality statistics. The response to the need and existing gaps were analysed using data obtained from a literature review, interviews with key persons, and survey data from service providers.The findings show very limited CPC service coverage for children in the public sector. In addition, services are mainly localised, with minimal reach. Less than 5% of the children needing care in South Africa are receiving it, with those receiving it being closer to the end of life. Barriers to the delivery of CPC include fear of opioid use, lack of education on CPC, lack of integration into the primary care system, lack of policies on CPC, and lack of community and health professional awareness of CPC needs and services. Estimating the need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage. PMID:24675539

Connor, Stephen; Sisimayi, Chenjari; Downing, Julia; King, Evelyn; Lim Ah Ken, Patricia; Yates, Rachel; Marston, Joan

2014-03-01

153

Management of nausea and vomiting in palliative care.  

PubMed

Nausea and vomiting are common symptoms in palliative care and can be highly distressing to patients. This review discusses the mechanisms by which nausea and vomiting are triggered, using case studies to highlight the most common scenarios and how to manage these. PMID:25040518

Neoh, Karen; Adkinson, Lucy; Montgomery, Victoria; Hurlow, Adam

2014-07-01

154

Palliative Care for Extremely Premature Infants and Their Families  

ERIC Educational Resources Information Center

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.

2010-01-01

155

The Evolving and Important Role of Anesthesiology in Palliative Care  

Microsoft Academic Search

A small but clinically significant proportion of dying patients experience severe physically or psychologi- cally distressing symptoms that are refractory to the usual first-line therapies. Anesthesiologists, currently poorly represented in the rapidly evolving specialties of hospice and palliative medicine, are uniquely quali- fied to contribute to the comprehensive care of patients who are in this category. Anesthesiologists' interper- sonal capabilities

Perry G. Fine

2005-01-01

156

78 FR 10117 - Use of Medicare Procedures To Enter Into Provider Agreements for Extended Care Services  

Federal Register 2010, 2011, 2012, 2013

...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...

2013-02-13

157

Supportive and Palliative Care of Advanced Nonmalignant Lung Disease  

Microsoft Academic Search

Supportive and palliative care is an interdisciplinary challenge with the aims of symptom relief and improvement of quality of life in end-stage patients. Main complaints of patients with advanced nonmalignant lung disease are depression and anxiety, dyspnea, pain, and coughing. The discomfort of many physicians, caregivers, and family members with discussions about end-of-life care is one obstacle for the timely

Michael Kreuter; Felix J. F. Herth

2011-01-01

158

Survey of Consumer Informatics for Palliation and Hospice Care  

PubMed Central

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. PMID:21521592

Corn, Milton; Gustafson, David H.; Harris, Linda M.; Kutner, Jean S.; McFarren, Ann E.; Shad, Aziza T.

2012-01-01

159

Novel open-source electronic medical records system for palliative care in low-resource settings  

PubMed Central

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. PMID:23941694

2013-01-01

160

Developing the Evidence Base for Palliative Care: Formation of the Palliative Care Research Cooperative and Its First Trial  

PubMed Central

The field of palliative care and hospice has gained accreditation, with a growing cadre of specialists being trained, but there is a dearth of robust research evidence to guide clinical practice. After 2 years of planning, a group of senior investigators convened in January 2010 to explore the possibility of forming a research cooperative group dedicated to advancing the evidence base in palliative care and hospice. The meeting launched the Palliative Care Research Cooperative (PCRC) with an initial national/international membership, and a plan for developing policies and procedures. Proof of the concept for the PCRC is being established through the design, conduct, and dissemination of a multi-site clinical trial targeting a consensually selected, clinically relevant research question: Should patients who are taking statins for primary or secondary prevention, and who have a prognosis of < 6 months, discontinue these medications? A core group of PCRC members have developed the flagship study for the PCRC, evaluating the discontinuation of statin medications in the palliative care setting. Using the proposed trial as a case study, we underscore several approaches to overcoming common research challenges in end-of-life settings, including: 1) study design, to ensure feasibility and timeliness; 2) strategies to overcome barriers to research in this population; 3) data collection and management, to reduce the burden on patients, caregivers, research personnel, and sites while maximizing quality and efficiency; and 4) agenda setting. This article describes the rationale for convening the PCRC and highlights core principles for developing the evidence base in palliative medicine. PMID:20890063

LeBlanc, Thomas W.; Kutner, Jean S.; Ko, Danielle; Wheeler, Jane L.; Bull, Janet; Abernethy, Amy P.

2014-01-01

161

Joining together to improve outcomes: integrating specialty palliative care into the care of patients with cancer.  

PubMed

This article addresses the misconception that patients with cancer should undergo a definitive "transition" to palliative care at some point in their trajectory, and instead proposes that a gradual shift should occur from primary palliative care provided by the oncologist to specialty palliative care when the need exists. The goal is to help practitioners identify which patients are in need of specialty palliative care, suggest when oncologists should consider making a referral, and offer a model for sharing the responsibilities of care once palliative care clinicians become involved. This model enhances the patient and family experience through improving symptom control and quality of life, and may even prolong survival. It also minimizes patients' perception of abandonment at the end of life, while reducing the risk of physician burnout in practicing oncologists. Lastly, the misconceptions of oncologists are addressed regarding how patients and families will accept the idea of a palliative care consultation, and suggestions are offered for responding to patient and/or family resistance to referral when it arises. PMID:24158970

Vergo, Maxwell T; Cullinan, Amelia M

2013-09-01

162

The sentinel hospitalization and the role of palliative care.  

PubMed

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

2014-05-01

163

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

PubMed

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

Larsen, Ann-Claire

2012-12-01

164

Unbearable Pain: India's Obligation to Ensure Palliative Care  

NSDL National Science Digital Library

The Human Rights Watch organization has written this report, which talks about the difficulties faced by patients in major cancer hospitals across India. Released in October 2009, this 102-page report takes an investigative look into the pain treatment situation in these hospitals. The report identifies three key obstacles to improving the availability of pain treatment and palliative care, including restrictive drug regulations and the failure to train doctors about pain treatment methods. Visitors will find that the report is divided into several major sections including "Palliative Care and Pain Treatment in India" and "The Plight of Patients". Additionally, interested parties can also view the appendices attached to the report. An online slide show and a video feature round out the site.

165

Dealing sensitively with sexuality in a palliative care context.  

PubMed

Sexuality is integral to a person's identity and is encompassed in holistic palliative care. Current directives emphasize psychosocial support that is sensitive to a variety of issues, including sexuality, and offer community nurses the mandate to facilitate expressing sexuality. Nurses fail to address sexuality for a variety of reasons. Appreciating patients' individuality and avoiding making assumptions are some of the requirements to enabling expression of sexuality. Nurses need wisdom and determination to discuss such issues, and it is important that they recognize opportunities and cues as they arise. This article provides an examination of the issues surrounding sexuality outlining an approach that captures' constant attention to details. This guides the 'what', 'how' and 'why' sexuality in palliative care can be addressed. Ethics and safety aspects are briefly discussed and implications for practice suggested. Educating staff and focused education for the patient can positively influence sexuality and individuals' quality of life. PMID:18399367

Woodhouse, Jan; Baldwin, Moyra A

2008-01-01

166

Palliative care and quality of life in neuro-oncology  

PubMed Central

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

Mummudi, Naveen

2014-01-01

167

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

PubMed Central

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

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

2013-01-01

168

A Strategy To Advance the Evidence Base in Palliative Medicine: Formation of a Palliative Care Research Cooperative Group  

PubMed Central

Abstract Background Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. Methods A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. Results : The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success. PMID:21105763

Aziz, Noreen M.; Basch, Ethan; Bull, Janet; Cleeland, Charles S.; Currow, David C.; Fairclough, Diane; Hanson, Laura; Hauser, Joshua; Ko, Danielle; Lloyd, Linda; Morrison, R. Sean; Otis-Green, Shirley; Pantilat, Steve; Portenoy, Russell K.; Ritchie, Christine; Rocker, Graeme; Wheeler, Jane L.; Zafar, S. Yousuf; Kutner, Jean S.

2010-01-01

169

Is Palliative Care Right for You?  

MedlinePLUS

... available Making medical decisions about treatment choices/options Matching your goals and values to your medical care ... Posts News Stories Quick Facts Donate Resources Links Videos, Podcasts & Livechats For the Media For Clinicians For ...

170

Enhancing Palliative Care for Low-Income Elders with Chronic Disease: Feasibility of a Hospice Consultation Model  

PubMed Central

Challenges exist in assimilating palliative care within community based services for nursing home eligible low-income elders with complex chronic illness as they approach the end of life. This study assessed the feasibility of a consultation model, with hospice clinicians working with three Care Wisconsin Partnership Program teams. Consults occurred primarily during team meetings and also informally and on joint patient visits and were primarily with the palliative care nurse addressing physical issues. 57% of consultant recommendations were implemented. Benefits of consultation were identified with focus groups of clinical staff as were opportunities and barriers to the implementation. Models of integration are proposed. PMID:25494931

Kramer, Betty J.; Cleary, Jim; Mahoney, Jane E.

2013-01-01

171

Needs assessments in palliative care: an appraisal of definitions and approaches used.  

PubMed

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

2007-05-01

172

Contacting Bereaved Relatives: The Views and Practices of Palliative Care and Oncology Health Care Professionals  

Microsoft Academic Search

There are few data on the interactions of health care professionals with bereaved relatives. The objective of this study was to explore the current practice of health care professionals in oncology and palliative care in contacting bereaved relatives, and to elicit their views regarding the purpose, the optimal means, the format, timing, and content of these contacts. We conducted 28

Silke Collins-Tracey; Josephine M. Clayton; Laura Kirsten; Phyllis N. Butow; Martin H. N. Tattersall; Richard Chye

2009-01-01

173

End of life/palliative care/ethics.  

PubMed

Palliative and end-of-life care, once the purview of oncologists and intensivists, has also become the responsibility of the emergency physician. As our population ages and medical technology enables increased longevity, it is essential that all medical professionals know how to help patients negotiate the balance between quantity and quality of life. Emergency physicians have the opportunity to educate patients and their loved ones on how to best accomplish their goals of care while also enhancing quality of life through treatment of symptoms. The emergency physician must be aware of the ethical and medico-legal parameters that govern decision making. PMID:25441045

Shreves, Ashley; Marcolini, Evie

2014-11-01

174

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

PubMed

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

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

2013-07-01

175

Physician practices for prescribing supplemental oxygen in the palliative care setting.  

PubMed

Dyspnea is a disturbing symptom frequently experienced by patients with advanced cancer. Supplemental oxygen is commonly used as palliative treatment in this setting. We undertook a telephone survey of physicians authorized to prescribe home oxygen according to eligibility criteria determined by publicly funded home care service. A clinical case was varied by addition of one to four factors: presence or absence of dyspnea, hypoxemia, private insurance, and a "dummy" factor to give 20 scenarios. Respondents decided whether to prescribe oxygen and rated degree of benefit oxygen would provide. Physician response rate was 81%. Respondents were in complete agreement in 44% of scenarios. The presence of breathlessness or hypoxemia affected the decision to prescribe oxygen; availability of private insurance did not. There was a wide range of perceived benefits to oxygen prescription. In conclusion, physician practices for prescribing supplemental oxygen in the palliative care setting are variable. Further research is needed. PMID:15690833

Stringer, Elizabeth; McParland, Colm; Hernandez, Paul

2004-01-01

176

[Treatment of constipation in the palliative care phase].  

PubMed

Constipation is a common problem with a considerable negative impact on quality of life in patients who receive palliative care. Over 35% of patients with heart failure, chronic obstructive pulmonary disease or cancer have constipation. In the palliative phase constipation often has multiple causes. Treatment of constipation consists of both medical treatment with laxatives and non-medical treatment. A specific recommendation for the use of laxatives cannot be made because of the lack of comparative trials. The choice of what laxative to use can only be made on the basis of clinical experience, mechanism of action, personal preference of the patient and costs. Prophylactic use of laxatives is indicated to prevent constipation when initiating constipation inducing medication such as opioids. In treatment-resistant constipation prucalopride, colchicine or misoprostol may be effective. Opioid-antagonists such as naloxone and methylnaltrexone are effective in patients with persistent opioid-induced constipation despite the use of laxatives. PMID:21176258

de Groot, Jan Willem B; Peters, Frans T M; Reyners, Anna K L

2010-01-01

177

Interdisciplinary Educational Approaches to Promote Team-Based Geriatrics and Palliative Care  

Microsoft Academic Search

Despite the increasing public demand for enhanced care of older patients and those with life-threatening illness, health professionals have had limited formal education in geriatrics and palliative care. Furthermore, formal education in interdisciplinary team training is limited. In order to remedy this situation, proactive interventions are being undertaken so that education and training in palliative care is being embedded within

Judith L. Howe; Deborah Witt Sherman

2006-01-01

178

Systematic review of specialist palliative day-care for adults with cancer  

Microsoft Academic Search

Goal of work: To inform future practice, research and policy in specialist palliative day-care by sys- tematically reviewing the evidence for how the structure and process of this form of care relate to outcomes for adults with cancer. Patients and methods: Medical, nursing and social science computerized databases were searched up until December 2003 for studies of palliative day-care report-

Elizabeth Davies; Irene J. Higginson

2005-01-01

179

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

PubMed

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

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

2010-09-01

180

Using social media in supportive and palliative care research.  

PubMed

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

Casañas I Comabella, Carolina; Wanat, Marta

2014-10-13

181

Living in the Memory of Loss: Exploring Aggressive, Palliative, and Hospice Care and Surviving Loved Ones  

E-print Network

in memories, and negative reactions, as becoming depressed. Guiding theoretical paradigms are studied with associations between positivism and aggressive care; social constructivism and palliative care; and transpersonal theory and hospice care reviewed. A...

Gordon, Theresa A.

2009-12-08

182

The relationship between providing neonatal palliative care and nurses' moral distress: an integrative review.  

PubMed

Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of this integrative review was to determine the relationship between the provision of palliative care in a NICU and nurses' moral distress. The evidence reviewed supports that moral distress does occur with the provision of neonatal palliative care. An interdisciplinary care team, an established protocol, and educational interventions may decrease moral distress in nurses providing end-of-life care to infants in the NICU. PMID:25022749

Cavinder, Christina

2014-10-01

183

GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study  

PubMed Central

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 PMID:19751527

Tan, Heather M; O'Connor, Margaret M; Miles, Gail; Klein, Britt; Schattner, Peter

2009-01-01

184

Integration of palliative care in the context of rapid response: a report from the improving palliative care in the ICU advisory board.  

PubMed

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

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

2015-02-01

185

Current challenges in palliative care provision for heart failure in the UK: a survey on the perspectives of palliative care professionals  

PubMed Central

Objective Palliative care (PC) in heart failure (HF) is beneficial and recommended in international HF guidelines. However, there is a perception that PC is underutilised in HF in the UK. This exploratory study aims to investigate, from a PC perspective, this perceived underutilisation and identify problems with current practice that may impact on the provision of PC in HF throughout the UK. Methods A prospective survey was electronically sent to PC doctors and nurses via the UK Association for Palliative Medicine and adult PC teams listed in the UK Hospice directory. Results We received 499 responses (42%—PC consultants). Although PC provision for patients with HF was widespread, burden on PC services was low (47% received less than 10 referrals annually). While PC was acknowledged to have a role in end-stage HF, there were differing views about the optimal model of care. Levels of interdisciplinary collaboration (58%) and mutual education (36%) were low. There were frequent reports that end-of-life matters were not addressed by cardiology prior to PC referral. Moreover, 24% of respondents experienced difficulties with implantable cardioverter defibrillator deactivation. Conclusions Low HF referrals despite widespread availability of PC services and insufficient efforts by cardiology to address PC issues may contribute to the perception that PC is underutilised in HF. The challenges facing PC and HF identified here need to be further investigated and addressed. These findings will hopefully promote awareness of PC issues in HF and encourage debate on how to improve PC support for this population.

Cheang, Mun Hong; Rose, Gabrielle; Cheung, Chi-Chi; Thomas, Martin

2015-01-01

186

Paediatric palliative care by video consultation at home: a cost minimisation analysis  

PubMed Central

Background In the vast state of Queensland, Australia, access to specialist paediatric services are only available in the capital city of Brisbane, and are limited in regional and remote locations. During home-based palliative care, it is not always desirable or practical to move a patient to attend appointments, and so access to care may be even further limited. To address these problems, at the Royal Children’s Hospital (RCH) in Brisbane, a Home Telehealth Program (HTP) has been successfully established to provide palliative care consultations to families throughout Queensland. Methods A cost minimisation analysis was undertaken to compare the actual costs of the HTP consultations, with the estimated potential costs associated with face-to face-consultations occurring by either i) hospital based consultations in the outpatients department at the RCH, or ii) home visits from the Paediatric Palliative Care Service. The analysis was undertaken from the perspective of the Children’s Health Service. The analysis was based on data from 95 home video consultations which occurred over a two year period, and included costs associated with projected: clinician time and travel; costs reimbursed to families for travel through the Patients Travel Subsidy (PTS) scheme; hospital outpatient clinic costs, project co-ordination and equipment and infrastructure costs. The mean costs per consultation were calculated for each approach. Results Air travel (n?=?24) significantly affected the results. The mean cost of the HTP intervention was $294 and required no travel. The estimated mean cost per consultation in the hospital outpatient department was $748. The mean cost of home visits per consultation was $1214. Video consultation in the home is the most economical method of providing a consultation. The largest costs avoided to the health service are those associated with clinician time required for travel and the PTS scheme. Conclusion While face-to-face consultations are the gold standard of care, for families located at a distance from the hospital, video consultation in the home presents an effective and cost efficient method to deliver a consultation. Additionally video consultation in the home ensures equity of access to services and minimum disruption to hospital based palliative care teams. PMID:25069399

2014-01-01

187

Ethical Challenges and Solutions Regarding Delirium Studies in Palliative Care  

PubMed Central

Context Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. Objectives Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. Methods Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. Results Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. Conclusion Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. PMID:24388124

Sweet, Lisa; Adamis, Dimitrios; Meagher, David; Davis, Daniel; Currow, David; Bush, Shirley H.; Barnes, Christopher; Hartwick, Michael; Agar, Meera; Simon, Jessica; Breitbart, William; MacDonald, Neil; Lawlor, Peter G.

2014-01-01

188

Integration of footprints information systems in palliative care: the case of Medical Center of Central Georgia.  

PubMed

Healthcare in America continues to be of paramount importance, and one of the most highly debated public policy issues of our time. With annual expenditures already exceeding $2.4 trillion, and yielding less than optimal results, it stands to reason that we must turn to promising tools and solutions, such as information technology (IT), to improve service efficiency and quality of care. Presidential addresses in 2004 and 2008 laid out an agenda, framework, and timeline for national health information technology investment and development. A national initiative was long overdue. This report we show that advancements in both medical technologies and information systems can be capitalized upon, hence extending information systems usage beyond data collection to include administrative and decision support, care plan development, quality improvement, etc. In this paper we focus on healthcare services for palliative patients. We present the development and preliminary accounts of a successful initiative in the Medical Center of Central Georgia where footprints information technology was modified and integrated into the hospital's palliative care service and existing EMR systems. The project provides evidence that there are a plethora of areas in healthcare in which innovative application of information systems could significantly enhance the care delivered to loved ones, and improve operations at the same time.. PMID:21057887

Tsavatewa, Christopher; Musa, Philip F; Ramsingh, Isaac

2012-06-01

189

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

PubMed Central

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

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

1995-01-01

190

Evidence-Based Palliative Care in the Intensive Care Unit: A Systematic Review of Interventions  

PubMed Central

Abstract Background: Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes. Methods: We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms “palliative care” and “intensive care unit” were mapped to MeSH subject headings and “exploded.” We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies. Results: Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention. Conclusions: Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality. PMID:24517300

Cheng, Jennifer; Vollenweider, Daniela; Galusca, Dragos; Smith, Thomas J.; Pronovost, Peter J.

2014-01-01

191

The Perspectives on Including Palliative Care in the Indian Undergraduate Physiotherapy Curriculum  

PubMed Central

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

Veqar, Zubia

2013-01-01

192

Ethical aspects of palliative care in lung cancer and end stage lung disease  

Microsoft Academic Search

Over 50 000 people die per year in England and Wales from lung cancer and chronic obstructive pulmonary disease (COPD). Current National Institute for Clinical Evidence guidelines for lung cancer and COPD recommend provision of palliative care for those that need it. Palliative care historically has accepted patients with cancer, but access to patients with non-malignant disease has been more

J Neerkin; J Riley

2006-01-01

193

Cancer, Palliative and End of Life Care ResearchProjects2012  

E-print Network

Cancer, Palliative and End of Life Care ResearchProjects2012 #12;2 5 4 Cancer, Palliative and End and students working together to transform care and improve outcomes for individuals affected by cancer, other the right questions to generate theory, influence policy and change practice. Cancer survivorship

Anderson, Jim

194

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

PubMed

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

Veqar, Zubia

2013-04-01

195

Desire for Euthanasia or Physician-Assisted Suicide in Palliative Cancer Care  

Microsoft Academic Search

Objective: To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death. Design: In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were

Keith G. Wilson; Harvey Max Chochinov; Christine J. McPherson; Merika Graham Skirko; Pierre Allard; Srini Chary; Pierre R. Gagnon; Karen Macmillan; Marina De Luca; Fiona O’Shea; David Kuhl; Robin L. Fainsinger; Andrea M. Karam; Jennifer J. Clinch

2007-01-01

196

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

ERIC Educational Resources Information Center

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

1994-01-01

197

Crossing the classroom-clinical practice divide in palliative care by using quality improvement methods  

Microsoft Academic Search

Palliative care has come of age. It is an established specialty with standards of practice and mechanisms to deliver them. Nonetheless, a gap continues to exist between the standards to which palliative care aspires and those that are achieved in practice. Education dissemination has \\

Linda Emanuel

2008-01-01

198

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

Federal Register 2010, 2011, 2012, 2013

...for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey...76053 and allowed 60-days for public comment. No...if received within 30 days of the date of this publication...Pediatric Palliative Care Campaign Pilot...

2013-03-13

199

Description of a teaching method for research education for palliative care healthcare professionals.  

PubMed

Objective: Despite the rapidly growing availability of palliative care services, there is still much to be done in order to better support clinicians who are starting research programs. Among the barriers identified in the literature, methodological issues and lack of research training programs are often reported. Our aim was to describe an educational research method for healthcare professionals working in palliative care and to report the result of a survey conducted among a three-year sample of students. Method: The course was provided for a multidisciplinary group and was open to all healthcare professionals involved in palliative care. It took place over a single session during a full day. We used a 20-question e-survey to assess student outcomes (e.g., satisfaction, current status of their project). Results: We received answers from 83 of the 119 students (70%) who took the course. The majority were physicians (n = 62, 75%), followed by nurses (n = 17, 21%). During the class, students assessed the role of the teacher as an information provider (n = 51, 61%), role model (n = 36, 43%), and facilitator (n = 33, 40%), and considered all of these roles as suitable, with a score of 3.9-4.7 out of 5. Participants reported a high level of support from the teacher, with a mean score of 8.2 (SD, 1.7) out of 10, and good overall satisfaction with a mean score of 7.6 (1.8). Finally, 51 participants (77%) were able to start their research project after the class, 27 (41%) to complete it, and 8 (12%) to submit their research to a journal or conference. Significance of results: Our results suggest that newer teaching methods such as roleplay, group work, and target acquisition are feasible and effective in a palliative research curriculum. Additional studies are needed to confirm the objective outputs of educational interventions, including research outputs. PMID:24763186

Rhondali, Wadih; My Thi Nguyen, Linh; Peck, Michelle; Vallet, Fabienne; Daneault, Serge; Filbet, Marilene

2014-04-24

200

Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal.  

PubMed

Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the transition to palliative care in the neonatal intensive care unit, and it was considered very important to raise their awareness and motivation about neonatal palliative care. Our research was based on Catlin and Carter's protocol from 2002 and the main goal was to assess neonatologists' willingness to build a palliative care and end-of-life protocol that could be acceptable nationwide. The survey used the Delphi technique and was developed in 3 rounds. The expert panel was composed of 57 participants who represented 41% of the Portuguese neonatologists. The study was conducted via the Internet, based in a researcher-created private Web site, and e-mail was used for data collection and feedback. Neonatologists agreed on 7 areas: (1) planning (medical education, resources, and local), (2) prenatal palliative care, (3) neonatal palliative care criteria, (4) the parents (presenting neonatal palliative care to parents, including then in the daily care of newborns and in family-centered care), (5) physicians' needs, (6) pain and symptom management, and (7) end-of-life care (withholding/withdrawing ventilation and hydration/nutrition). PMID:24300959

Mendes, Joana C C; Justo da Silva, Lincoln

2013-12-01

201

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

PubMed Central

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

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

2015-01-01

202

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

PubMed

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

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

2014-01-01

203

The experiences of stress of palliative care providers in malaysia: a thematic analysis.  

PubMed

A qualitative study was conducted with semistructured interviews to explore the experiences of stress in 20 palliative care providers of University Malaya Medical Centre in Malaysia. The results were thematically analyzed. Nine basic themes were generated: (1) organizational challenges, (2) care overload, (3) communication challenges, (4) differences in opinion, (5) misperceptions and misconceptions, (6) personal expectations, (7) emotional involvement, (8) death and dying thoughts, and (9) appraisal and coping. A total care model of occupational stress in palliative care was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of stress in palliative care. PMID:24023263

Beng, Tan Seng; Chin, Loh Ee; Guan, Ng Chong; Yee, Anne; Wu, Cathie; Pathmawathi, Subramaniam; Yi, Kweh Ting; Kuan, Wong Sook; Jane, Lim Ee; Meng, Christopher Boey Chiong

2015-02-01

204

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

PubMed

Objective: Optimal communication is essential in ensuring that the palliative care needs of patients are met. This continues to be an area of concern for healthcare providers. The goal of our present review was to gain a deeper understanding of the communication experiences of patients with palliative care needs that have been identified within the qualitative literature. Method: A systematic search for qualitative research papers was undertaken in February of 2012. Five databases (ASSIA, CINAHL, MEDLINE, PsychArticles, and PsychINFO) were searched using the search terms ["palliative care" OR "terminal care" OR "end of life care"] AND ["experience" OR "perspective" OR "qualitative" OR "interview"] AND ["patients" OR "clients" OR "service-user"]. Meta-synthesis was conducted on the data within the found papers. Results: A line-of-argument synthesis of 15 studies yielded four overarching themes: talking-facilitating and inhibiting factors; the importance of humanitarian qualities within communication encounters; perceptions of autonomy within communication experiences; and individual differences in preferences for honesty within interactions. Significance of results: Our findings are discussed in relation to existing literature and offer a deeper insight into the communication experiences of this clinical population. A number of clinical implications are offered for the healthcare professionals who are providing support to patients with palliative care needs. PMID:24784479

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

2014-05-01

205

76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...  

Federal Register 2010, 2011, 2012, 2013

...Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs Assessment...Proposed Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment...Information Collection: The NINR End-of-Life Science Palliative Care (EOL PC)...

2011-09-23

206

76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...  

Federal Register 2010, 2011, 2012, 2013

...Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs Assessment...Proposed Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment...Information Collection: The NINR End-of-Life Science Palliative Care (EOL PC)...

2011-06-16

207

Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life.  

PubMed

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients. PMID:16295285

Hopkinson, Jane B; Wright, David N M; Corner, Jessica L

2005-10-01

208

Smell and taste in palliative care: a systematic analysis of literature.  

PubMed

Little is known on the role of the senses smell and taste in end-of-life care. The presented systematic literature analysis investigates the significance of smell and taste in palliative care. The online databases PubMed, CINAHL, MEDLINE, Deutsche Nationalbibliothek and British National Library were searched for English and German literature published between 1970 and April 2013 containing any kind of original data on the impact of smell and taste in patients in a palliative care situation. All retrieved publications were screened for relevance and full text was obtained for all articles identified as relevant. We integrated 13 papers for further analysis (explorative surveys 5, clinical trials 3, case studies 2, qualitative study 1, brief report 1, clinical report 1). Prevalence of smell and taste alterations in palliative care ranges between 60 and 86 %. Existing literature reflects the significance of smells and tastes in palliative care setting in two main streams-smell and taste alterations as symptoms and malodorous wounds. Prevalence of smell and taste alterations in palliative care is high. However, in palliative care literature concepts for the assessment and fostering of subjective significance of smell and taste and the individual impact of significant smells and tastes are predominantly neglected. Available instruments should be characterized, validated and adapted for the use for palliative care patients. PMID:24705604

Heckel, Maria; Stiel, Stephanie; Ostgathe, Christoph

2015-02-01

209

Reform of drug control policy for palliative care in Romania.  

PubMed

Unrelieved pain from cancer and HIV/AIDS is a substantial worldwide public-health problem. Inadequate pain relief is partly due to excessively strict national drug-control policies that constrain medical use of essential medicines such as morphine. Romania's drug-control policies are more than 35 years old and impose an antiquated regulatory system that is based on inpatient post-surgical management of acute pain that restricts prescription authority and makes access to opioid treatment difficult for outpatients with severe chronic pain due to cancer or HIV/AIDS. A Ministry of Health palliative-care commission used WHO guidelines to assess and recommend changes to Romania's national drug control law and regulations. The Romanian parliament has adopted a new law that will simplify prescribing requirements and allow modern pain management. Achievement of adequate pain relief is a vital part of worldwide health and will be dependent on reform of antidrug regulations in many countries. PMID:16798394

Mosoiu, Daniela; Ryan, Karen M; Joranson, David E; Garthwaite, Jody P

2006-06-24

210

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians  

Microsoft Academic Search

Background  The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to\\u000a provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians\\u000a have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line\\u000a continuing medical education in terms

Marta Pelayo; Diego Cebrián; Almudena Areosa; Yolanda Agra; Juan Vicente Izquierdo; Félix Buendía

2011-01-01

211

Global warming in the palliative care research environment: adapting to change.  

PubMed

Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change. PMID:18541636

Fainsinger, R L

2008-06-01

212

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

PubMed

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

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

2013-01-01

213

Cannabis in Palliative Medicine: Improving Care and Reducing Opioid-Related Morbidity  

Microsoft Academic Search

Unlike hospice, long-term drug safety is an important issue in palliative medicine. Opioids may produce significant morbidity. Cannabis is a safer alternative with broad applicability for palliative care. Yet the Drug Enforcement Agency (DEA) classifies cannabis as Schedule I (dangerous, without medical uses). Dronabinol, a Schedule III prescription drug, is 100% tetrahydrocannabinol (THC), the most psychoactive ingredient in cannabis. Cannabis

Gregory T. Carter; Aaron M. Flanagan; Mitchell Earleywine; Donald I. Abrams; Sunil K. Aggarwal; Lester Grinspoon

2011-01-01

214

Human Relationships in Palliative Care of Cancer Patient: Lived Experiences of Iranian Nurses  

PubMed Central

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. PMID:24757399

Borimnejad, Leili; Mardani Hamooleh, Marjan; Seyedfatemi, Naimeh; Tahmasebi, Mamak

2014-01-01

215

Home Care Services  

MedlinePLUS

Home care is care that allows a person with special needs stay in their home. It might be for people who are getting ... chronically ill, recovering from surgery, or disabled. Home care services include Personal care, such as help with ...

216

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

PubMed Central

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

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

2014-01-01

217

Palliative care--transiting old tradition and values into the modern health care practice.  

PubMed

Care of the dying patient is care for the patient who is still living, it is helping that patient to live his or her life to the fullest whether at home or hospice, or in hospital. It is care that is not just centered on the individual but includes members of the family. It is focused on improving the quality of patients' life, by incorporating into the professional care most of unique human values, such as respect, empathy, compassion and tender loving care. Palliative care is a broad band of care of indeterminate length, and does not necessarily end with the death of the patient. Until life begins to glow again, some surviving relatives may need support during the bereavement period. Thanks to Dr Elisabeth Kübler-Ross and Dame Cicely Saunders, two great women visionaries and leaders of the emergence of Palliative Care, one of the best things that has happened to medicine in the 20th century, the development of care for dying patients and their families was possible. PMID:12898838

Krasuska, Ma?gorzata E; Stanis?awek, Andrzej; Mazurkiewicz, Maria; Daniluk, Jadwiga

2002-01-01

218

Health care professionals’ perceptions towards lifelong learning in palliative care for general practitioners: a focus group study  

PubMed Central

Background There is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care professionals and professionals from organizations who provide training and education. Methods Five focus groups were brought together in Belgium, with a total of 29 participants, including members of the three categories mentioned above. They were analysed using a constant comparison method. Results The analysis revealed that undergraduate education and continuing medical education (CME) while in practice, is insufficient to prepare GPs for their palliative work. Workplace learning (WPL) through collaboration with specialized palliative home-care nurses seems to be a valuable alternative. Conclusions The effectiveness of undergraduate education might be enhanced by adding practical experience. Providers of continuing medical education should look to organize interactive, practice-based and interprofessional sessions. Therefore, teachers need to be trained to run small group discussions. In order to optimize workplace learning, health care professionals should be trained to monitor each other’s practice and to provide effective feedback. Further research is needed to clarify which aspects of interprofessional teamwork (e.g. professional hierarchy, agreements on tasks and responsibilities) influence the effectiveness of workplace learning. PMID:24552145

2014-01-01

219

The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.  

PubMed

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

2014-02-01

220

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

MedlinePLUS

... to wait. Serious illnesses and their treatments can cause exhaustion, anxiety and depression. Palliative care teams understand that pain and other symptoms affect your quality of life and can leave ...

221

In the shadow of death: existential and spiritual concerns among persons receiving palliative care.  

PubMed

This study explores existential and spiritual concerns from the perspective of people receiving palliative care. It examines the meaning of these concerns, their influence on people's lives and investigates the connections between them. In-depth qualitative interviews were conducted with ten persons. Findings reveal existential and spiritual aspects as interconnected and an integral part of the participants' everyday existence. It concludes with a call for a better understanding of these phenomena in the palliative care context. PMID:25241482

Asgeirsdottir, Gudlaug Helga; Sigurbjörnsson, Einar; Traustadottir, Rannveig; Sigurdardottir, Valgerdur; Gunnarsdottir, Sigridur; Kelly, Ewan

2014-01-01

222

What neonatal intensive care nurses need to know about neonatal palliative care.  

PubMed

The purpose of this study was to identify and prioritize topics for a professional development program in neonatal palliative care. A total of 276 nurses and midwives who work in an Australian neonatal intensive care unit (NICU) and 26 international healthcare professionals working in NICU and palliative care served as participants. A Delphi technique was used, consisting of a series of rounds of data collection via interview and questionnaire, to identify and consolidate opinions of nurses and other healthcare professionals who work in neonatal intensive care units. The main outcome measures were: (1) Topics to be included in a professional development program for nurses working in neonatal intensive care units and (2) the preferred format of the program. Twenty-three high-priority topics were identified, which included preparing families when death is imminent, how to provide emotional support to grieving parents, advocating for a dying baby, and assessing and managing pain in a dying baby. Care of a dying infant requires the same skill set as caring for older terminally ill children internationally. A combination of face-to-face lectures and interactive workshops using case studies and audiovisual examples is the preferred format. PMID:23532030

Ahern, Kathy

2013-04-01

223

[Key ethic discussions in hospice/palliative care].  

PubMed

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

Jusi?, Anica

2008-12-01

224

Palliative care delivery in the NICU: what barriers do neonatal nurses face?  

PubMed

Despite the existence of a universal protocol in palliative care for dying babies and their families, provision of this type of care remains ad hoc in contemporary neonatal settings. Influential bodies such as the American Academy of Pediatrics and the World Health Organization support palliative care to this patient population, so why are such measures not universally adopted? Are there barriers that prevent neonatal nurses from delivering this type of care? A search of the literature reveals that such barriers may be significant and that they have the potential to prevent dying babies from receiving the care they deserve. The goal of this literature review is to identify these barriers to providing palliative care in neonatal nursing. Results of the research have been used to determine item content for a survey to conceptualize and address these barriers. PMID:17162999

Kain, Victoria J

2006-01-01

225

[The network of palliative care for persons with incurable disease in the Local Health Agency n. 7 of the Veneto region].  

PubMed

Only 20% of terminally ill people with cancer in Italy are assisted by a network of palliative care, whereas the majority of them die in the hospital, against their will, and with very low doses of opioids. A palliative care service, is offered by the Nucleus of Palliative care within the Operative Unit of District Primary Care in the local health agency n. 7 of Pieve di Soligo. This service takes charge of the patient from hospital discharge until his/her death, working in concert with the inpatieint hospitals and other territorial health care structures. In this way, the patient and his/her family are followed by a team of professionals working together in coordination and collaboration. In 2010 the percentage of terminally ill persons enrolled in the program was 52%, much greater than the standard of 45% required by ministerial law (DM no 43 del 2007) for the local health agencies without a hospice. The duration of time spent at home during the last phases of the illness was over 90% of time in care, with an in-home mortality of 63%. The consumption of major opioids was amongst the highest in Italy. Thanks to the opening of a hospice, already planned, we will be able to take charge within the network of palliative care thos sick people who cannot remain in the home and extend the service to ill persons without cancer in conditions of advanced incurable disease and end of life. PMID:22880385

Paludetti, P; De Chirico, C; Durante, M; Cinquetti, S

2012-01-01

226

A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases.  

PubMed

Palliative care should be part of integrated care for patients with end-stage respiratory diseases. An intensive inpatient interdisciplinary palliative care programme has been developed for patients with end-stage respiratory diseases in the Netherlands. This programme consists of the management of daily symptoms and care needs to support patients and their families, and maintain or improve quality of life of these patients and their loved ones. This article presents case studies which describe the clinical course and management of three patients admitted to the programme: a 77-year-old woman who died from chronic obstructive pulmonary disease (COPD); a 60-year-old woman with end-stage COPD who improved her daily functioning and was discharged home after 3 months; and a 74-year-old woman who died of pulmonary fibrosis. This article describes the characteristics of the programme and shows the possible benefits of an intensive patient-centred interdisciplinary palliative care programme for patients with end-stage respiratory diseases. Palliative care programmes can be the final step in the chain of care for patients with respiratory diseases. Further research is necessary to study whether, and to what extent, a patient-centred interdisciplinary palliative care programme for end-stage respiratory diseases may improve health status, daily symptom burden, patient satisfaction and quality of dying. PMID:20559181

Janssen, Daisy J A; Spruit, Martijn A; Alsemgeest, Ton P G; Does, Joan D; Schols, Jos M G A; Wouters, Emiel F M

2010-04-01

227

The need for hospital-based neonatal palliative care programs in Saudi Arabia.  

PubMed

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. PMID:19700889

Al-Alaiyan, Saleh; Al-Hazzani, Fahad

2009-01-01

228

PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire  

PubMed Central

Background PaTz (an acronym for ‘PAlliatieve Thuis Zorg’; palliative care at home) is an intervention to improve palliative care provision and strengthen the generalist knowledge of palliative care. In PaTz general practitioners and district nurses meet on a regular basis to identify patients with palliative care needs and to discuss care for these patients. This study explores experiences with regard to collaboration between general practitioners and district nurses, and perceived benefits of and barriers for implementation of PaTz. Methods This study is conducted within the primary care setting. Participants were 24 general practitioners who filled in a questionnaire, and seven general practitioners, five district nurses and two palliative care consultants who attended one of two focus groups. Results PaTz led to improved collaboration. Participants felt informational and emotional support from other PaTz participants. Also they felt that continuity of care was enhanced by PaTz. Practical recommendations for implementation were: meetings every 6 to 8 weeks, regular attendance from both general practitioners and district nurses, presence of a palliative care consultant, and a strong chairman. Conclusions PaTz is successful in enhancing collaboration in primary palliative care and easy to implement. Participants felt it improved continuity of care and knowledge on palliative care. Further research is needed to investigate whether patient and carer outcomes improve. PMID:24444024

2014-01-01

229

Managing beyond an uncertain illness trajectory: palliative care in advanced heart failure.  

PubMed

A lack of comprehensive and effective palliative care is clearly evident in a number of studies describing the end of life for patients with advanced heart failure. These patients have been portrayed as experiencing a wide array of poorly managed symptoms. The primary rationale for the lack of care has been the uncertain illness trajectory that characterizes living with advanced heart failure. Nurses must manage care beyond the illness trajectory from an emphasis of palliative care as each of these patients may face significant illness burden and even sudden death. The purpose of this paper is to: discuss the current status of palliative care for patients with advanced heart failure; explain the basic pathophysiology and resulting signs and symptoms of advanced heart failure; describe pharmacological and non-pharmacological symptom management strategies for patients with advanced heart failure. PMID:17353842

Zambroski, Cheryl Hoyt

2006-12-01

230

Pilot test of a three-station palliative care observed structured clinical examination for multidisciplinary trainees.  

PubMed

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

2013-05-01

231

Impact of a palliative care program on end-of-life care in a neonatal intensive care unit.  

PubMed

Objective:Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.Study design:Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan and staff education.Result:Eighty-two infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar (88% vs 81%; P =0.17), whereas benzodiazepines use increased in Era 2 (26% vs 43%; P=0.03). Withdrawal of life support (73% vs 63%; P=0.17) and do-not-resuscitate orders (46% vs 53%; P=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared with infants without activated orders (n=47).Conclusion:End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication.Journal of Perinatology advance online publication, 23 October 2014; doi:10.1038/jp.2014.193. PMID:25341195

Younge, N; Smith, P B; Goldberg, R N; Brandon, D H; Simmons, C; Cotten, C M; Bidegain, M

2014-10-23

232

Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care.  

PubMed

While palliative care is best delivered in an interdisciplinary format, courses teaching the interdisciplinary approach to palliative care are rare in healthcare education. This article describes a graduate-level course in palliative care for students in nursing, pharmacy, social work, and gerontology taught by faculty from each discipline. The overarching goals of this course are to convey core palliative care knowledge across disciplines, articulate the essential contribution of each discipline in collaborative care, and to define interdisciplinary processes learners need to understand and navigate interdisciplinary palliative care. Learning outcomes included increased knowledge in palliative care, enhanced attitudes in practice and application of skills to clinical practice settings, increased ability to contribute discipline-specific knowledge to their teams' discussions, and a sense of increasing confidence in participating in the care of complex patients, communicating with families, and contributing to the team as a member of their own discipline. PMID:23977797

Supiano, Katherine P

2013-01-01

233

Does a palliative care consult decrease the cost of caring for hospitalized patients with dementia?  

PubMed

Objective: Advanced dementia (AD) is a terminal disease. Palliative care is increasingly becoming of critical importance for patients afflicted with AD. The primary objective of this study was to compare pharmacy cost before and after a palliative care consultation (PCC) in patients with end-stage dementia. A secondary objective was to investigate the cost of particular types of medication before and after a PCC. Method: This was a retrospective study of 60 hospitalized patients with end-stage dementia at a large academic tertiary care hospital from January 1, 2010 to October 1, 2011, in order to investigate pharmacy costs before and after a PCC. In addition to demographics, we carried out a comparison of the average daily pharmacy cost and comparison of the proportion of subjects taking each medication type (cardiac, analgesics, antibiotics, antipsychotics and antiemetics) before and after a PCC. Results: There was a significant decrease in overall average daily pharmacy cost from before to after a PCC ($31.16 ± 24.71 vs. $20.83 ± 19.56; p < 0.003). There was also a significant difference in the proportion of subjects taking analgesics before and after PCC (55 vs. 73.3%; p < 0.009), with a significant average daily analgesic cost rise from pre- to post-PCC: $1.36 ± 5.07 (median = $0.05) versus. $2.35 ± 5.35 (median = $0.71), respectively, p < 0.011; average daily antiemetics cost showed a moderate increase from pre- to post-PCC: $0.08 ± 0.37 (median = $0) versus $0.23 ± 0.75 (median = $0), respectively, p < 0.047. Significance of results: Our findings indicate that PCC is associated with overall decreased medication cost in hospitalized AD patients. Additionally, receiving a PCC was related to greater use of pain medications in hospitalized dementia patients. Our study corroborates the benefits of palliative care team intervention in managing elderly hospitalized dementia patients. PMID:24139019

Araw, Marissa; Kozikowski, Andrzej; Sison, Cristina; Mir, Tanveer; Saad, Maha; Corrado, Lauren; Pekmezaris, Renee; Wolf-Klein, Gisele

2013-10-21

234

Complementary medicine in palliative care and cancer symptom management.  

PubMed

Complementary and alternative medicine (CAM) use among cancer patients varies according to geographical area, gender, and disease diagnosis. The prevalence of CAM use among cancer patients in the United States has been estimated to be between 7% and 54%. Most cancer patients use CAM with the hope of boosting the immune system, relieving pain, and controlling side effects related to disease or treatment. Only a minority of patients include CAM in the treatment plan with curative intent. This review article focuses on practices belonging to the CAM domains of mind-body medicine, CAM botanicals, manipulative practices, and energy medicine, because they are widely used as complementary approaches to palliative cancer care and cancer symptom management. In the area of cancer symptom management, auricular acupuncture, therapeutic touch, and hypnosis may help to manage cancer pain. Music therapy, massage, and hypnosis may have an effect on anxiety, and both acupuncture and massage may have a therapeutic role in cancer fatigue. Acupuncture and selected botanicals may reduce chemotherapy-induced nausea and emesis, and hypnosis and guided imagery may be beneficial in anticipatory nausea and vomiting. Transcendental meditation and the mindfulness-based stress reduction can play a role in the management of depressed mood and anxiety. Black cohosh and phytoestrogen-rich foods may reduce vasomotor symptoms in postmenopausal women. Most CAM approaches to the treatment of cancer are safe when used by a CAM practitioner experienced in the treatment of cancer patients. The potential for many commonly used botanical to interact with prescription drugs continues to be a concern. Botanicals should be used with caution by cancer patients and only under the guidance of an oncologist knowledgeable in their use. PMID:17034678

Mansky, Patrick J; Wallerstedt, Dawn B

2006-01-01

235

The relational model of spiritual engagement depicted by palliative care clients and caregivers.  

PubMed

This paper aims to explicate the essence of spiritual engagement from the perspective of palliative care clients and their caregivers. Van Manen's hermeneutic phenomenological approach guided this study. In-depth interviews of 14 rural Australian participants with experience of a life-limiting condition provided rich discourse of the lived experience of spiritual engagement. This research highlights spiritual engagement represented in a relational model developed from a creative synthesis of the emerging themes. Spiritual engagement is associated with 'personal transformation', 'human values of love, compassion and altruism', 'maintaining relationships', 'participating in religious practices' and 'culture'. The findings of this research are supported by Mayes' observations on spirituality, that is, the 'pursuit of a trans-personal and trans-temporal reality that serves as the ontological ground for an ethic of compassion and service'. PMID:23432887

Penman, Joy; Oliver, Mary; Harrington, Ann

2013-02-01

236

The Palliative care has an expanding future in the heart of health care in New Zealand. It is founded on an interdisciplinary, patient centered model of care delivered in people's homes, hospice,  

E-print Network

The Palliative care has an expanding future in the heart of health care in New Zealand Diploma in Health Sciences (Palliative Care) This qualification consists of four papers, HLTH401: Health and Health Systems, HLTH450: Palliative Care: Advanced theory and practice, Students who have the Whitiriea

Hickman, Mark

237

Assessment of palliative care training in gynecologic oncology: A gynecologic oncology fellow research network study  

PubMed Central

Objective Palliative care is recognized as an important component of oncologic care. We sought to assess the quality/quantity of palliative care education in gynecologic oncology fellowship. Methods A self-administered on-line questionnaire was distributed to current gynecologic oncology fellow and candidate members during the 2013 academic year. Descriptive statistics, bivariate and multivariate analyses were performed. Results Of 201 fellow and candidate members, 74.1% (n = 149) responded. Respondents were primarily women (75%) and white (76%). Only 11% of respondents participated in a palliative care rotation. Respondents rated the overall quality of teaching received on management of ovarian cancer significantly higher than management of patients at end of life (EOL), independent of level of training (8.25 vs. 6.23; p < 0.0005). Forty-six percent reported never being observed discussing transition of care from curative to palliative with a patient, and 56% never received feedback about technique regarding discussions on EOL care. When asked to recall their most recent patient who had died, 83% reported enrollment in hospice within 4 weeks of death. Fellows reporting higher quality EOL education were significantly more likely to feel prepared to care for patients at EOL (p < 0.0005). Mean ranking of preparedness increased with the number of times a fellow reported discussing changing goals from curative to palliative and the number of times he/she received feedback from an attending (p < 0.0005). Conclusions Gynecologic oncology fellow/candidate members reported insufficient palliative care education. Those respondents reporting higher quality EOL training felt more prepared to care for dying patients and to address complications commonly encountered in this setting. PMID:24887355

Eskander, Ramez N.; Osann, Kathryn; Dickson, Elizabeth; Holman, Laura L.; Rauh-Hain, J. Alejandro; Spoozak, Lori; Wu, Eijean; Krill, Lauren; Fader, Amanda Nickles; Tewari, Krishnansu S.

2014-01-01

238

Furry and Feathered Family Members-A Critical Review of Their Role in Palliative Care.  

PubMed

This article presents a comprehensive critical review of the peer-reviewed literature on palliative care and companion animals (CAs), reporting on the evidence and knowledge base regarding CAs and their role for people at end of life. PubMed, PsycINFO, Medline, Scopus, and Google Scholar were searched for studies pertaining to CAs, end of life, and hospice palliative care. Six studies dealt specifically with empirical research. The remaining literature addressed the topic peripherally or anecdotally. The evidence for efficacy and the knowledge base about the role of CAs at end of life in hospice and palliative care is weak. Further efforts are required to study the conditions under which CAs may be beneficial for patient care, including acceptability to staff, family, and other patients, and with consideration of welfare for the animals involved. PMID:23892336

Chur-Hansen, Anna; Zambrano, Sofia C; Crawford, Gregory B

2013-07-26

239

CE: continuing education article. Integration of palliative care for patients with stage 5 chronic kidney disease.  

PubMed

Patients with advanced chronic kidney disease (Stage 5 CKD) have palliative care needs similar to patients with cancer. The decision not to commence dialysis or to withdraw from active treatment can have a profound impact upon all those closely involved in the patient's care. It is essential that every effort is made to minimise the physical and psycho-social symptoms experienced by patients who require palliative care. Effective teamwork across professional boundaries and specialities will ensure that patients and their families are provided with maximum comfort during their final days. All members of the healthcare team must strive to ensure patient and family are actively encouraged in the decision-making process surrounding palliative care needs. PMID:20969741

Sedgewick, John; Noble, Helen; Ho, Tai Mooi; Kafkia, Theodora; Van Waeleghem, Jean-Pierre

2010-12-01

240

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

PubMed Central

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

Perez-Hoyos, Santiago; Agra-Varela, Yolanda

2013-01-01

241

Validation of a new instrument for self-assessment of nurses' core competencies in palliative care.  

PubMed

Competence can be seen as a prerequisite for high quality nursing in clinical settings. Few research studies have focused on nurses' core competencies in clinical palliative care and few measurement tools have been developed to explore these core competencies. The purpose of this study was to test and validate the nurses' core competence in palliative care (NCPC) instrument. A total of 122 clinical nurse specialists who had completed a postbachelor program in palliative care at two university colleges in Norway answered the questionnaire. The initial analysis, with structural equation modelling, was run in Mplus 7. A modified confirmatory factor analysis revealed the following five domains: knowledge in symptom management, systematic use of the Edmonton symptom assessment system, teamwork skills, interpersonal skills, and life closure skills. The actual instrument needs to be tested in a practice setting with a larger sample to confirm its usefulness. The instrument has the potential to be used to refine clinical competence in palliative care and be used for the training and evaluation of palliative care nurses. PMID:25132989

Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth

2014-01-01

242

How to attract more males to community-based hospice palliative care volunteer programs.  

PubMed

Two separate studies were conducted to better understand why so few middle-aged and older men volunteer in hospice palliative care; only about 10% of the patient/family care volunteers in New Brunswick's community-based hospice palliative care volunteer programs are men. In study 1, 15 (22%) of the 68 men who read a brief description about the kinds of things that hospice palliative care volunteers do expressed an interest in this type of volunteerism. The main reasons given for their lack of interest included ''being too busy'' and ''not being able to handle it emotionally.'' At least one third of the men who said ''No'' to becoming a hospice palliative care volunteer expressed an interest in 10 of 13 other common volunteer activities (eg, driving). In study 2, 59 men were presented with a list of 25 tasks that hospice palliative care volunteers might perform when providing emotional, social, practical, and administrative support. The men were asked to indicate which tasks they would be willing to perform if they were a hospice palliative care volunteer. The men were least willing to serve on the board of directors (28%), provide hands on patient care (38%), and work in the volunteer program's office (42%); they were most willing to talk to the patient (97%), share hobbies and interests with the patient (92%), listen to the patient's memories and life stories (90%), and provide friendship and companionship (88%). The results of these studies may have implications for the recruitment of male volunteers to work with dying patients and their families. PMID:19666891

Claxton-Oldfield, Stephen; Guigne, Simone; Claxton-Oldfield, Jane

243

Study of Nurses’ Knowledge about Palliative Care: A Quantitative Cross-sectional Survey  

PubMed Central

Context: Studies have documented that nurses and other health care professionals are inadequately prepared to care for patients in palliative care. Several reasons have been identified including inadequacies in nursing education, absence of curriculum content related to pain management, and knowledge related to pain and palliative care. Aims: The objective of this paper was to assess the knowledge about palliative care amongst nursing professionals using the palliative care knowledge test (PCKT). Settings and Design: Cross-sectional survey of 363 nurses in a multispecialty hospital. Materials and Methods: The study utilized a self-report questionnaire- PCKT developed by Nakazawa et al., which had 20 items (statements about palliative care) for each of which the person had to indicate ‘correct’, ‘incorrect’, or ‘unsure.’ The PCKT had 5 subscales (philosophy- 2 items, pain- 6 items, dyspnea- 4 items, psychiatric problems- 4 items, and gastro-intestinal problems- 4 items). Statistical Analysis Used: Comparison across individual and professional variables for both dimensions were done using one-way ANOVA, and correlations were done using Karl-Pearson's co-efficient using SPSS version 16.0 for Windows. Results: The overall total score of PCKT was 7.16 ± 2.69 (35.8%). The philosophy score was 73 ± .65 (36.5%), pain score was 2.09 ± 1.19 (34.83%), dyspnea score was 1.13 ± .95 (28.25%), psychiatric problems score was 1.83 ± 1.02 (45.75%), and gastro-intestinal problems score was 1.36 ± .97 (34%). (P = .00). The female nurses scored higher than their male counterparts, but the difference was not significant (P > .05). Conclusions: Overall level of knowledge about palliative care was poor, and nurses had a greater knowledge about psychiatric problems and philosophy than the other aspects indicated in PCKT. PMID:23093828

Prem, Venkatesan; Karvannan, Harikesavan; Kumar, Senthil P; Karthikbabu, Surulirajan; Syed, Nafeez; Sisodia, Vaishali; Jaykumar, Saroja

2012-01-01

244

Applying a palliative care approach in residential care: Effects on nurse assistants' work situation.  

PubMed

Objectives: The aim was to investigate the effects of an intervention that applies a palliative care approach in residential care upon nurse assistants' level of strain, job satisfaction, and view of leadership. Method: A quasi-experimental, pretest and posttest design was used. Study circles with workshops involving nurse assistants (n = 75) and their superiors (n = 9) focusing on emotional and existential issues in palliative care were evaluated using a questionnaire answered by the nurse assistants at baseline (November 2009), post-intervention (May 2010), and six-month follow-up (November 2010) in comparison with controls (n = 110). Results: Directly after the intervention, the job satisfaction of the nurse assistants decreased and they perceived the leadership more negatively than before the intervention. Six months later, strain as a result of criticism from residents and their superiors and having difficulty in balancing emotional involvement had decreased. Significance of results: The intervention initially seemed to decrease the well-being of the nurse assistants, which could be the result of their increased awareness of the residents' and relatives' needs, in combination with limited support. More emphasis should be placed on the role of leadership when implementing changes in practice. PMID:24138938

Beck, Ingela; Jakobsson, Ulf; Edberg, Anna-Karin

2013-10-21

245

Developing Interdisciplinary Skills and Professional Confidence in Palliative Care Social Work Students  

ERIC Educational Resources Information Center

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.

2013-01-01

246

The nursing dimension of providing palliative care to children and adolescents with cancer.  

PubMed

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. PMID:23641169

Docherty, Sharron L; Thaxton, Cheryl; Allison, Courtney; Barfield, Raymond C; Tamburro, Robert F

2012-01-01

247

Assistance to children in palliative care in the Brazilian scientific literature  

PubMed Central

Objective: To describe what has been published in Brazilian scientific literature regarding pediatric palliative care. Data sources: Bibliographic review with a descriptive approach. In LILACS and SciELO databases, the descriptors "palliative care", "child", "pediatrics", "terminal illness" and "death" were sought, from January 2002 to December 2011. The eight selected articles were analyzed according to year of publication, type of study, data collected, target population, pathology, professionals involved, types of care and main findings. Data synthesis: Regarding the year of publication, there was an increase in the number of publications related to pediatric palliative care. Regarding the type of study, four articles were literature reviews and four were qualitative researches. Data was collected mainly by semi-structured interviews. The participants of the majority of the studies were children's relatives and health professionals. The main pathology addressed was cancer and the nurses were the most frequently cited professionals. The types of care provided were related to physical aspects, general care and psychological, social and spiritual aspects (less emphasis). The main findings were: little emphasis on the children's needs, the importance of including the family in the care provided and the lack of preparation of the health team. Conclusions: Despite the difficulties and the challenges in establishing pediatric palliative care, many articles brought important considerations for the development of this practice in the country. PMID:24676197

Garcia-Schinzari, Nathália Rodrigues; Santos, Franklin Santana

2014-01-01

248

Bereaved Caregivers as Educators in Pediatric Palliative Care: Their Experiences and Impact  

PubMed Central

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. PMID:23725232

Green, Angela; Towe, Shannon; Huett, Amy

2013-01-01

249

Few U.S. Public Health Schools Offer Courses on Palliative and End-of-Life Care Policy  

PubMed Central

Abstract Background: Palliative care has been identified by the World Health Organization (WHO) as a critical policy element for the relief of suffering, yet palliative care policy receives minimal attention in mainstream U.S. public health journals, conferences, or textbooks. In the ’90s, documentation of the lack of attention to end-of-life and palliative care in medical and nursing curricula led to concerted efforts to improve medical and nursing education in palliative care. No such educational effort has yet been directed toward public health professionals. Objective: This study's objective was to quantify current course offerings covering palliative and end-of-life care from a public health and health policy perspective at accredited schools of public health. Design: Using a list of keywords about palliative and end-of-life care, the research team searched publicly accessible websites of all CEPH accredited and affiliated U.S. schools of public health to identify courses that included relevant content about palliative care. Results: For academic years 2011/12 and 2012/13, 3 (6%) of the 49 accredited U.S. schools of public health offered a full course covering public health issues in palliative care. Six schools (12%) included some palliative care content in related courses such as gerontology policy. Conclusions: Schools of public health are not preparing future policy experts with a basic knowledge of the components and systems of palliative care and hospice. Development and dissemination of appropriate curricular material to address the public health and policy aspects of palliative care is needed to address this gap. PMID:24256202

Deneszczuk, Caroline; Leystra, Tara; McKinnon, Rebecca; Seng, Victoria

2013-01-01

250

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis  

PubMed Central

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. PMID:24906901

Brazil, Kevin; Sussman, Jonathan; Pereira, José; Marshall, Denise; Austin, Peter C; Husain, Amna; Rangrej, Jagadish; Barbera, Lisa

2014-01-01

251

Therapeutic massage: an education program for rural and remote workers in the palliative care field.  

PubMed

This paper, drawing upon data from a Rural Health, Support, Education and Training (RHSET) funded project, focuses on the evaluation of a massage education program developed specifically for rural and remote palliative care workers. An 8 week pilot massage education course was run for palliative care workers in the Albury-Wodonga area and, from this course, an instructional video education package on massage has been developed. The program was evaluated by using a questionnaire, journals and focus group interviews. Feedback from participants was incorporated into both the pilot course and final education package, which was consistent with the action research framework. The major findings of the project were that skill development in the therapeutic use of massage was attained and that job satisfaction was indeed achieved by palliative care workers. PMID:10745734

van der Riet, P; Mackey, S

1999-08-01

252

Palliative and end-of-life care in pediatric solid organ transplantation.  

PubMed

End-of-life care is a component of palliative care and takes a holistic, individualized approach to patients, focusing on the assessment of quality of life and its maintenance until the end of life, and beyond, for the patient's family. Transplant teams do not always make timely referrals to palliative care teams due to various clinician and perceived family barriers, an important one being the simultaneous, active care plan each patient would have alongside an end-of-life plan. Application of findings and further research specific to the pediatric solid organ population would be of significant benefit to guide transplant teams as to the most effective time to introduce end-of-life care, who to involve in ongoing discussions, and important ethical and cultural considerations to include in care planning. Attention must also be paid to clinician training and support in this challenging area of health care. PMID:25422076

Fowler, Amy; Freiberger, Dawn; Moonan, Marilyn

2015-02-01

253

The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients  

PubMed Central

The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation.

Rawlinson, FM; Gwyther, L; Kiyange, F; Luyirika, E; Meiring, M; Downing, J

2014-01-01

254

Developing a web-based information resource for palliative care: an action-research inspired approach  

PubMed Central

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 [1]. 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. PMID:17854509

Street, Annette F; Swift, Kathleen; Annells, Merilyn; Woodruff, Roger; Gliddon, Terry; Oakley, Anne; Ottman, Goetz

2007-01-01

255

Home telehealth and paediatric palliative care: clinician perceptions of what is stopping us?  

PubMed Central

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. PMID:24963287

2014-01-01

256

Conformance With Supportive Care Quality Measures Is Associated With Better Quality of Life in Patients With Cancer Receiving Palliative Care  

PubMed Central

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. PMID:23942504

Kamal, Arif H.; Bull, Janet; Stinson, Charles S.; Blue, Debra L.; Abernethy, Amy P.

2013-01-01

257

Patient-centering approaches for the surgical oncologist: palliative care, patient navigation, and distress screening.  

PubMed

Surgeons can more effectively meet the public's increased expectation of patient-centered care by directing attention to pain, non-pain symptoms, including depression and anxiety, in addition to the patient's personal preferences, resources, and support needs. Patient navigation and palliative care, both pioneered by surgeons, provide complementary frameworks for the screening, assessment and intervention needed to achieve enhanced patient outcomes including adherence to care, improved quality of life and patient satisfaction. PMID:24995436

Dunn, Geoffrey P; Miller, Nina

2014-10-01

258

We would like to take this opportunity to invite you to the 4th Annual Great Lakes Regional Palliative Care Conference (formally known as Challenging Topics in Palliative Care) on April 17, 2015. This is a CME conference sponsored by the Palliative Care C  

E-print Network

We would like to take this opportunity to invite you to the 4th Annual Great Lakes Regional of Wisconsin. 4th Annual Great Lakes Regional Palliative Care Conference Save the date: April 17, 2015 and dessert. We look forward to seeing you at this year's 4th Annual Great Lakes Regional Palliative Care

259

Achieving palliative care research efficiency through defining and benchmarking performance metrics  

PubMed Central

Purpose of Review Research efficiency is gaining increasing attention in the research enterprise, including palliative care research. The importance of generating meaningful findings and translating these scientific advances to improved patient care creates urgency in the field to address well-documented system inefficiencies. The Palliative Care Research Cooperative Group (PCRC) provides useful examples for ensuring research efficiency in palliative care. Recent Findings Literature on maximizing research efficiency focuses on the importance of clearly delineated process maps, working instructions, and standard operating procedures (SOPs) in creating synchronicity in expectations across research sites. Examples from the PCRC support these objectives and suggest that early creation and employment of performance metrics aligned with these processes are essential to generate clear expectations and identify benchmarks. These benchmarks are critical in effective monitoring and ultimately the generation of high quality findings that are translatable to clinical populations. Prioritization of measurable goals and tasks to ensure that activities align with programmatic aims is critical. Summary Examples from the PCRC affirm and expand the existing literature on research efficiency, providing a palliative care focus. Operating procedures, performance metrics, prioritization, and monitoring for success should all be informed by and inform the process map to achieve maximum research efficiency. PMID:23080309

Lodato, Jordan E.; Aziz, Noreen; Bennett, Rachael E.; Abernethy, Amy P.; Kutner, Jean S.

2014-01-01

260

Opioid availability and palliative care in Nepal: influence of an international pain policy fellowship.  

PubMed

Globally, cancer incidence and mortality are increasing, and most of the burden is shifting to low- and middle-income countries (LMICs), where patients often present with late-stage disease and severe pain. Unfortunately, LMICs also face a disproportionate lack of access to pain-relieving medicines such as morphine, despite the medical and scientific literature that shows morphine to be effective to treat moderate and severe cancer pain. In 2008, an oncologist from Nepal, one of the poorest countries in the world, was selected to participate in the International Pain Policy Fellowship, a program to assist LMICs, to improve patient access to pain medicines. Following the World Health Organization public health model for development of pain relief and palliative care, the Fellow, working with colleagues and mentors, has achieved initial successes: three forms of oral morphine (syrup, immediate-release tablets, and sustained-release tablets) are now manufactured in the country; health-care practitioners are receiving training in the use of opioids for pain relief; and a new national palliative care association has developed a palliative care training curriculum. However, long-term implementation efforts, funding, and technical assistance by governments, philanthropic organizations, and international partners are necessary to ensure that pain relief and palliative care become accessible by all in need in Nepal and other LMICs. PMID:24768596

Paudel, Bishnu Dutta; Ryan, Karen M; Brown, Mary Skemp; Krakauer, Eric L; Rajagopal, M R; Maurer, Martha A; Cleary, James F

2015-01-01

261

An overview of hospice and palliative care nursing models and theories.  

PubMed

Current literature reports that nurses are the members of the health-care team who have the most contact with patients facing a life-threatening illness. The multidisciplinary palliative care approach means that hospice and palliative care nurses require a consistent theoretical foundation in order to be confident of and able to explain their role. The aim of this paper is to describe existing palliative care and hospice nursing models and theories and to identify their core concepts. Literature published between 2002 and 2012 on such models was reviewed and subjected to content analysis. Ten core concepts were identified that fell into three categories: patient, nurse, and therapeutic relationship. The themes and values identified in the end-of-life nursing models and theories are congruent with palliative care best practices based on a patient-centred and an interdisciplinary teamwork approach. In developing a therapeutic relationship with patients, nurses have a 'privileged' experience that may lead to existential growth and job satisfaction. PMID:24577213

Dobrina, Raffaella; Tenze, Maja; Palese, Alvisa

2014-02-01

262

Assessing and Responding to Palliative Care Needs in Rural Sub-Saharan Africa: Results from a Model Intervention and Situation Analysis in Malawi  

PubMed Central

Introduction Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences. Methods Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the NPCP’s first 9 months; 2) structured interviews with patients and caregivers; 3) semi-structured interviews with key stakeholders. Results The NPCP enrolled 63 patients in its first 9 months. Frequent diagnoses were cancer (n?=?50, 79%) and HIV/AIDS (n?=?37 of 61, 61%). Nearly all (n?=?31, 84%) patients with HIV/AIDS were on antiretroviral therapy. Providers registered 112 patient encounters, including 22 (20%) home visits. Most (n?=?43, 68%) patients had documented pain at baseline, of whom 23 (53%) were treated with morphine. A majority (n?=?35, 56%) had ?1 follow-up encounter. Mean African Palliative Outcome Scale pain score decreased non-significantly between baseline and follow-up (3.0 vs. 2.7, p?=?0.5) for patients with baseline pain and complete pain assessment documentation. Providers referred 48 (76%) patients for psychosocial services, including community health worker support, socioeconomic assistance, or both. We interviewed 36 patients referred to the NPCP after the chart review period. Most had cancer (n?=?19, 53%) or HIV/AIDS (n?=?10, 28%). Patients frequently reported needing income (n?=?24, 67%) or food (n?=?22, 61%). Stakeholders cited a need to make integrated palliative care widely available. Conclusions We identified a high prevalence of pain and psychosocial needs among patients with serious chronic illnesses in rural Malawi. Early NPCP results suggest that comprehensive palliative care can be provided in rural Africa by integrating disease-modifying treatment and palliative care, linking hospital, clinic, and home-based services, and providing psychosocial support that includes socioeconomic assistance. PMID:25313997

Kalanga, Noel; Keck, James W.; Wroe, Emily B.; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Beste, Jason A.; Tengatenga, Listern; Bazile, Junior

2014-01-01

263

Acting as standardized patients enhances family medicine residents' self-reported skills in palliative care.  

PubMed

Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory palliative care workshop in communication for incoming, first-year trainees. Four months later, FMR-SPs reflected upon their own experiences. Two independent researchers performed thematic analysis of these interviews. Most of the residents were satisfied with their roles. Twelve reported improved understanding of self, their patients, the doctor-patient relationship, and the underlying philosophy of palliative care. They also described improved verbal and non-verbal communication skills. Eleven of 14 residents reflected upon behavioral changes in problem coping styles. All residents indicated an intention to apply the learning in their future work. Encouraging Thai Family Medicine residents, in years one through three, to portray SPs in palliative care appears to be a valuable learning experience for the resident. Future studies to validate whether this learning has been applied in subsequent practice are planned. PMID:25256636

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

2014-09-26

264

Distribution and sharing of palliative care costs in rural areas of Canada.  

PubMed

Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time. PMID:25058986

Dumont, Serge; Jacobs, Philip; Turcotte, Véronique; Turcotte, Stéphane; Johnston, Grace

2014-01-01

265

Factors that influence physicians in providing palliative care in rural communities in Taiwan  

Microsoft Academic Search

Goals of work: To identify the willingness, influencing factors, and educational needs of community physicians in providing palliative care in the rural areas of Taiwan. Methods: A questionnaire was sent to all medical directors of the 140 government health stations assigned to the rural areas of Taiwan. Results: The overall response rate was 62.8% with 85 valid question- naires retrieved.

Wen-Jing Liu; Wen-Yu Hu; Yie-Fong Chiu; Tai-Yuan Chiu; Bee-Hong Lue; Ching-Yu Chen; Susumn Wakai

2005-01-01

266

The edmonton functional assessment tool: Preliminary development and evaluation for use in palliative care  

Microsoft Academic Search

The purpose of this article is to report the development and psychometric testing of the Edmonton Fanctional Assessment Tool (EFAT), The EFAT was developed as a functional outcome measure for use with a palliative care population. The assessment identified ten functional activities important to patients even in the terminal stage of their illness. In addition, a global performance status rating

Terry Kaasa; Joan Loomis; Kathy Gillis; Eduardo Bruera; John Hanson

1997-01-01

267

Clinical Experience with Transdermal and Orally Administered Opioids in Palliative Care Patients—A Retrospective Study  

Microsoft Academic Search

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

2007-01-01

268

How common are thoughts of self-harm in a UK palliative care population?  

Microsoft Academic Search

A prospective study was carried out to determine the incidence of thoughts of self-harm in a population of palliative care patients and to determine the association of thoughts of self harm with age, diagnosis and scoring above a prevalidated threshold for depression using the Edinburgh Depression Scale (EDS). Two hundred and forty-eight (108 male and 140 female) patients participated in

Mari Lloyd-Williams

2002-01-01

269

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

PubMed Central

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

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

2014-01-01

270

Researching "good death" in a Hong Kong palliative care program: a clinical data-mining study.  

PubMed

This study operationalizes and assesses the percentage of "good deaths" achieved among Chinese cancer patients in a palliative care program, the profile of these patients, the relationship between patients with a good death and psychosocial factors, and the differences in background factors, and physical and psychosocial conditions between patients who experienced a good death and those who did not. Clinical data mining was the research method used. Records of deceased cancer patients between 2003 and 2005 in a palliative care unit were the sole data source. Good death was operationally defined as the patient's record indicating no pain (physical) or anxiety (psychological), and having open and honest communication with family (social) in the final assessment by the Support Team Assessment Schedule (STAS) just before death. Using these criteria, about one-fifth of patients (21.5%; 137 out of 638) experienced a good death. Those with a good death were significantly older and were in palliative care longer. Their records also indicated lower levels of constipation, insomnia, oral discomfort, and family anxiety at their first and at their final STAS assessments. Good death was positively associated with recorded indicators of fullness in life, caregivers' acceptance and support, and negatively with reported feelings of upset about changes in the course of their illness. The results heighten awareness among social workers and other healthcare professionals about the value of good death in patients in palliative care. This empirically-based awareness can foster professionals' ability to set intervention objectives to help patients in palliative care achieve this universally accepted goal. PMID:22455106

Chan, Wallace C H; Epstein, I

271

Prehospital emergency treatment of palliative care patients with cardiac arrest: a retrolective investigation  

PubMed Central

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. PMID:19813029

Bartels, Utz E.; Zausig, York A.; Pfirstinger, Jochen; Graf, Bernhard M.; Hanekop, Gerd G.

2009-01-01

272

A Comparative Study to Assess the Awareness of Palliative Care Between Urban and Rural Areas of Ernakulum District, Kerala, India  

PubMed Central

Aim: To assess the knowledge and attitude toward palliative care among people residing in urban and rural areas. Materials and Methods: This cross-sectional study was conducted among 185 urban and 165 rural households. Senior-most member of the household present was interviewed using a questionnaire. Only those people who have heard about palliative care were included in the study. Results: Out of 350 people, 47 (13.4%) have heard about palliative care. Of these 38 (20.5%) belonged to urban and 9 (5.4%) belonged to rural areas (P < 0.0001).Twenty-nine (15.7%) participants in urban and 7 (4.2%) in rural areas had some knowledge about palliative care (P = 0.0002). Source of information for 25 (53.2%) participants was newspapers followed by television 17 (36.2%). Thirty-three (86.8%) participants in urban and 7 (77.8%) in rural areas felt that palliative care helps in improving quality of life. Twenty (52.6%) participants in urban and 4 (44.4%) participants in rural areas felt that palliative care can be better provided at homes than hospitals. Thirty (78.9%) urban participants felt that bad news about the patient's condition needs to be told to the patient first and then to their family members. In case of rural participants majority 7 (77.8%) said vice versa (P = 0.0039). Conclusion: Overall awareness of palliative care was poor. This calls for large-scale awareness campaigns. As home-based palliative care was preferred by many, home visits by care providers and training of family members of patient's needing palliative care needs to be practiced widely. PMID:20668590

Joseph, Nitin; S, Jayarama; Kotian, Shashidhar

2009-01-01

273

Developing children’s palliative care in Africa through beacon centres: lessons learnt  

PubMed Central

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. PMID:23419095

2013-01-01

274

A proposed systems approach to the evaluation of integrated palliative care  

PubMed Central

Background There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations. PMID:20459734

2010-01-01

275

Drugs in palliative care: results from a representative survey in Germany.  

PubMed

The development of palliative medicine in inpatient units in Germany has been impressive in the last years. As a first step of quality assurance, a core documentation form was developed in 1996. In 2001, 55 of the 83 palliative inpatient units in Germany and one unit each in Switzerland and Austria participated in the third phase of the evaluation of the core documentation. A total of 1304 patients were documented consecutively in the 57 units for a period of up to three months. This study investigates the frequency of drugs used in palliative care units in Germany. During inpatient treatment, the most common drug classes were strong opioids (68% of the patients), nonopioids (59%), corticosteroids (32%), laxatives (31%), antiemetics (27%), gastric protection agents (24%), neuroleptics (19%), sedatives/anxiolytics (18%), antidepressants (16%) and diuretics (15%). These ten drug classes made up for 72% of all prescriptions in the palliative care units. The substances used most frequently were dipyrone (47% of the patients), morphine (42%), fentanyl (28%), dexamethasone (27%), metoclopramide (21%), sodium picosulfate (15%), haloperidol (13%), pantoprazole (11%), macrogol (11%), amtriptyline (11%), furosemide (10%), omeprazole (9%), lactulose (8%), rofecoxib (8%) and lorazepam (7%). The 15 most commonly used drugs accounted for 54% of the prescriptions in the palliative care units in Germany. Drug treatment was related to sex, age and functional status of the patients. Patients who died in a palliative care unit had received significantly more frequent doses of neuroleptics (P < 0.001), corticosteroids (P < 0.001), sedatives/anxiolytics (P < 0.001) and strong opioids (P < 0.001). This study is the first representative and systematic evaluation of drug treatment in palliative care units in a European country. Many of the 'top 15' drugs were drugs included in the list of essential drugs of the World Health Organisation though availability and cultural differences have an effect on the use of drugs, e.g., the high usage of dipyrone in Germany. Age and sex-related differences in drug therapy were seen, and more research is needed to recognize possible undertreatment of symptoms in subgroups of patients, e.g., treatment of depression in older or male patients. PMID:15046406

Nauck, Friedemann; Ostgathe, Christoph; Klaschik, Eberhard; Bausewein, Claudia; Fuchs, Martin; Lindena, Gabriele; Neuwöhner, Karl; Schulenberg, Dieter; Radbruch, Lukas

2004-03-01

276

Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: study overview and protocol  

PubMed Central

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, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations. PMID:22471327

2012-01-01

277

Pediatric palliative care - The role of the patient’s family  

PubMed Central

Whenever a child suffers, what does she or he cry Mother! What does that mean Palliative care is not a type of medicine based on objective evidence or statistics. The only relevant standard is the very individual quality of life. Nobody knows better what this actually means but the patient himself. Thus, if the mother’s presence has the biggest impact on a child’s wellbeing or comfort, she herself is the most valuable treatment modality. In nearly every publication dealing with pediatric palliative care, it is stated that palliative care does not only imply care for the sick child but also for the parents and the whole family. Usually, it is pointed out that they are suffering a lot as well. But helping them does also mean: helping the child! Of course, it means higher efforts, obligations and costs for the healthcare system. Thus the justification of this effort may be put in question; in particular, it may be argued that disorders of family members should, if necessary, be treated as such. But this is only one side of the coin! In the following, we will, based on published literature, look at the role of mothers, fathers, and siblings for the wellbeing of an ill or even dying child. As a conclusion, we will learn that if it is our task to give a dying child the best available care, helping mothers, fathers and sibling is an inevitable part of it. PMID:25254162

Classen, Carl Friedrich

2012-01-01

278

Educating surgeons for the new golden hours: honing the skills of palliative care.  

PubMed

All surgeons should maintain a lifetime commitment to education and learning. Those who already are in practice need to make the effort to obtain or refresh their education in basic competencies in palliative care and to provide a measured balance between philosophy and practical skills. Many resources and teaching tools are available to assist in this continuing process: surgical peers (and peers from other medical specialties),journals, textbooks, CME conferences, surgical governance and educational organizations, and palliative care websites. A tremendous summary article on palliative care education for surgeons was published recently in JACS[24]. Surgeons must be competent in the following palliative care skills:communication, holistic patient evaluation, control of pain and symptoms,understanding legal/ethical issues, withdrawing care, and the continuum of acute to chronic to terminal care. If they cannot attend to all of these areas individually, they need to be aware of the local, regional, and national resources that are available to assist the patient (or their surrogate decision maker) and themselves in the end-of-life arena. Consultations and referrals should be accomplished in such a manner that the patient does not feel abandoned by his/her surgeon at such a critical point in his/her life. Practicing surgeons also must be involved actively in the education of resident and medical students in didactic and clinical situations. Most importantly, they must model the appropriate behaviors for their charges personally, whether it be in the consultation room breaking bad news compassionately or at the bedside easing the path to the next world. In these golden hours, the educated surgeon who wields new and mighty resources can be the greatest champion of the patient who is at the end of life. PMID:15833479

Huffman, Joan L

2005-04-01

279

A palliative care intervention for pain refractory to a percutaneous cordotomy.  

PubMed

Background: Intrathecal analgesia and radiofrequency techniques for tumor ablation are employed for palliation of symptoms. These interventions are efficacious in a select number of patients for controlling pain and improving quality of life. Careful selection of an appropriate candidate must be performed to prevent needless, invasive, and costly interventions, as interventional pain management alone will not treat total pain in cancer patients. We describe here a patient who experienced intractable pain and unsuccessfully underwent cordotomy but responded to the interdisciplinary (IDT) palliative care approach in an acute palliative care unit (APCU). Case: A middle-aged female with ovarian cancer metastatic to the left psoas muscle and the supraclavicular and retroperitoneal lymph nodes was admitted with severe left thigh and flank pain. She had been unsuccessfully treated with different opioid regimens, hypogastric nerve block, epidural steroid injection, and cordotomy. The palliative care team was consulted while awaiting placement of an intrathecal pump. The patient was subsequently transferred to the APCU for symptom management and transition to hospice. On admission, her morphine equivalent daily dose (MEDD) was 660 mg. Our IDT-composed of a physician, fellow, nurse practitioner, counselor, chaplain, social worker, and physical and occupational therapists-was able to identify several sources of distress that likely contributed to her expression of pain. Our IDT focused on frequent counseling, improving her function, provided medication education, discussed goals of care, and educated about hospice. She was discharged to hospice care with good pain control and an 85% reduction in her MEDD. Conclusion: An APCU approach involving an IDT alleviated the need for invasive interventions by diagnosing and treating the psychosocial, emotional, and spiritual distress contributing to the patient's total pain expression. Successful management must be reflective of rigorous assessment of the physical, psychological, spiritual, social, and practical aspects before consideration of more invasive treatments. PMID:24717241

de la Cruz, Maxine; Reddy, Akhila; Bruera, Eduardo

2014-04-01

280

Acting with dedication and expertise: Relatives' experience of nurses' provision of care in a palliative unit.  

PubMed

Objectives: Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward. Methods: A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background. Results: Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise." Significance of results: The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise. PMID:24182691

Grøthe, A; Biong, Stian; Grov, E K

2013-11-01

281

Working together. An interdisciplinary approach to dying patients in a palliative care unit.  

PubMed

Multiprofessional teams have become in recent years one of the distinguishing features of services, where professionals with different competences work together. The core of our interest is addressed to the équipe of a palliative care ward; in particular, to that series of working activities that consists of communicative acts, as équipe meetings, for instance. Our research focuses on the analysis of the process by which the development of knowledge in multiprofessional practice is built to establish more information on recurrent patterns in the interaction and connect them to the specific context that these are shaped by. In this sense we will underline how components of knowing are shared among team members in constructing medical prognosis and we will analyse the connection among language processes, cognitive activities and social structures. More specifically, we will study the role of language and the context in the definition of linguistic acts in cognitive activities and in hierarchies involved in decision-making processes by exploring and pointing out how it is organised and structured. In particular through the study of talk-in-interaction where interchange of information is realised, we will emphasise how, in the multiprofessional équipe meeting, the realisation of practices and the knowledge useful to collaborative management of ward working life are established. To reach this aim, we adopted an ethnographic approach connected to the analysis of the situated interaction. PMID:21947801

Minetti, Aurora

2011-12-01

282

Assessing Patients' Palliative Care Needs in the Final Stages of Illness During Hospitalization.  

PubMed

This study aimed to explore the palliative care needs of inpatients in the final stages of illness and to analyze the factors that influence them. The survey comprised 349 inpatients in the terminal stage of disease. Needs were assessed with the Patient Needs Assessment in Palliative Care (PNAP) questionnaire; mental status was evaluated using the Hospital Anxiety and Depression Scale (HADS) questionnaire. The importance of needs varied with respect to patients' diagnosis, age, gender, religion, and their levels of anxiety and depression. Most frequently, predictors of needs importance were lower age, poorer functional status, higher anxiety, and lower depression scores. Unmet needs were more likely to be indicated by nonreligious patients with better functional status and higher anxiety and depression scores. PMID:25361612

Buzgova, Radka; Sikorova, Lucie; Jarosova, Darja

2014-10-30

283

The challenges of managing cancer related venous thromboembolism in the palliative care setting  

PubMed Central

Cancer patients with venous thromboembolism (VTE) pose particular management challenges since they have an increased risk of bleeding and recurrent thrombosis compared to the non?cancer population. Also, as the disease progresses so do the hazards of anticoagulation, and patients in the palliative stages of their cancer could be viewed as a separate disease group with respect to diagnosis and management. As the focus from curative treatment moves towards symptom control, physicians face several challenges in providing the most appropriate care. Palliative care patients have rarely been included in research on VTE and the supporting evidence needs to be extrapolated cautiously. Quality of life aspects of VTE and their management may be a more appropriate outcome measure in this stage of disease than radiological end points. This paper looks at the challenges facing professionals in the management of VTE in the advanced cancer patient. PMID:17989265

Noble, S

2007-01-01

284

A Social Marketing-Based Recruitment Protocol for Clinical Trials in Palliative Care | accrualnet.cancer.gov  

Cancer.gov

Investigators of a large-scale palliative care trial developed a recruitment plan that combined lessons learned from multiple, published, evidence-based strategies with social marketing principles. Recruitment goals were exceeded, with 76 percent of patients referred to the study enrolling. This abstract may be useful for investigators of palliative care trials and may have relevance for other types of large trials as well.

285

Expanding the Reach of a Cancer Palliative Care Curriculum Through Web-Based Dissemination: A Public–Private Collaboration  

Microsoft Academic Search

Deficiencies in palliative and end-of-life care have been well documented by the Institute of Medicine. The National Cancer\\u000a Institute (NCI), in partnership with Northwestern University, developed an educational curriculum for clinicians who deal\\u000a with end-of-life issues, the Education in Palliative and End-of-Life Care for Oncology. A live meeting was held to distribute\\u000a the curriculum to institutional leaders who could take

Cheryl Arenella; Susan Yox; Daniel S. Eckstein; Anita Ousley

2010-01-01

286

Clinical nurse specialists in palliative care. Part 1. A description of the MacMillan Nurse caseload.  

PubMed

Macmillan Nurses play a significant role in specialist palliative care services in the UK, providing direct and indirect services to patients with complex palliative care needs and to their families. Existing literature shows a developing understanding of the role; however, little detailed data exist regarding the clinical work that they undertake. This paper provides evidence from a major evaluation study, commissioned by Macmillan Cancer Relief. It reports the methods of data collection for the study and then goes on to use data from the evaluation to describe the caseload of Macmillan Nurses. Between September 1998 and October 1999, a team of researchers worked alongside 12 Macmillan teams for a period of 8 weeks with each team. Prospective data were gathered on all new referrals to the services within the 8-week period. This included demographic details, timing of referral, the nature and purpose of contacts, and interventions, recorded from case notes and Macmillan Nurse records. Where possible, a date of death was obtained for all patients. A total of 814 new patients were referred during the study period (range 45-114 per site). The most common reasons for referral were emotional care for the patient (57%), pain control (27%), and other physical symptoms (33%). Thirteen per cent of the patients referred to the services died within 1 week of referral while 40% died within 6 weeks; thus, a significant proportion of patient work is focused on care at the end of life. It is also noteworthy that one-third of patients were still alive, indicating that some patients are being cared for earlier in the illness trajectory. On average, each new patient referral received two or more 'face-to-face' visits and two follow-up phone calls within the 8-week period. It would appear that Macmillan Nurse teams have been successful in getting access to relevant patients. As with any service that provides a complex set of interventions, the Macmillan teams have to adapt and develop the services in each setting. Whilst it is clearly important for the development of a Macmillan service to be tailored to the local conditions, the evidence on diversity suggests that in some cases, stronger guidance, in partnership with both Macmillan Cancer Relief and core providers, may be justified. PMID:12132541

Skilbeck, Julie; Corner, Jessica; Bath, Peter; Beech, Nicola; Clark, David; Hughes, Phillipa; Douglas, Hannah-Rose; Halliday, Deborah; Haviland, Jo; Marples, Rachael; Normand, Charles; Seymour, Jane; Webb, Tom

2002-07-01

287

Developing a web-based information resource for palliative care: an action-research inspired approach  

Microsoft Academic Search

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

Kathleen Swift; Merilyn Annells; Roger Woodruff; Terry Gliddon; Anne Oakley; Goetz Ottman

2007-01-01

288

Characteristics, Interventions, and Outcomes of Lung Transplant Recipients Co-Managed with Palliative Care.  

PubMed

Abstract Background: Lung transplantation (LT) recipients carry a high symptom burden. Palliative Care (PC) is a field of medicine focused on symptom control and psychosocial support, but transplant recipients are often referred to PC very late in the disease course, if at all. In our institution, the LT service has increasingly consulted PC to co-manage LT recipients with end-stage graft dysfunction or other terminal conditions. We present the characteristics, PC interventions used, and outcomes of these patients. Methods: We conducted a single-center, retrospective, cohort study of LT recipients referred for PC consultation between January 2010 and May 2012. We collected patient demographics, timing and location of PC consultation, PC interventions, and patient outcomes. Results: Twenty-four patients met the inclusion criteria. Sixteen (67%) had chronic allograft dysfunction. Reasons for referral were dyspnea (42%), end-of-life planning (42%), pain (29%), cough (4%), anxiety (4%), and depression (4%). Referral was made a median of 3.2 (range, 0.2 to 18) years from transplant and a median 14 days (range, 0 to 227 days) from death. Eighty-three percent of consultations occurred >48 hours from time of death. Ninety-two percent of patients were prescribed opioids over their course of treatment. Among the 12 (50%) who died in our center, 10 (83%) were receiving comfort medications. Eight patients (33%) initially requested full resuscitation at the time of PC consultation, but seven of these patients (or their surrogates) later agreed to a do not resuscitate (DNR) order; the eighth was still alive at last follow-up. No patient in this study received cardiopulmonary resuscitation (CPR) at the time of death. Conclusion: LT recipients referred for PC co-management typically receive comfort medications and avoid the aggressive end-of-life care usually reported for this population. The effect of PC interventions on patient quality of life requires further study. PMID:25162457

Colman, Rebecca; Singer, Lianne G; Barua, Reeta; Downar, James

2014-08-27

289

Palliative care and end of life issues in UK pre-registration, undergraduate nursing programmes.  

PubMed

Palliative and end of life care topics have traditionally not been in nursing school curricula. Only in recent years have these been included. The aim of this research was to determine the current status of such an emphasis in programmes in the United Kingdom (UK). A mailed survey in 2006 to the 66 undergraduate (pre-registration) nursing programmes in the UK (return rate of 79%) determined that palliative and end of life care play a significant role in these programmes. Forty-five teaching hours on average were devoted to these topics. All of the schools have some provision on palliative and end of life care, and over 95% of students participated in these courses. A nurse was usually the primary instructor, although non-nurses were sometimes used. Attitudes toward dying and death and communicating with terminally-ill patients and family members were emphasised. By highlighting dying and death in the curricula, nursing schools appeared to be giving nursing students an opportunity to face the issue of death, thus helping them to be better prepared to help their patients and their families to do so. PMID:17452066

Dickinson, George E; Clark, David; Sque, Magi

2008-02-01

290

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

PubMed

Considerable evidence is now available on the value of palliative care for lung cancer patients in all stages and at all times during the course of the disease. However, pneumologists and their institutions seem to be widely in arrears with the implementation of palliative care concepts and the development of integrated structures. This review focuses on the available evidence and experience of various frequently unmet needs of lung cancer patients, especially psychological, social, spiritual and cultural ones. A PubMed search for evidence on these aspects of palliative care as well as on barriers to the implementation, on outcome parameters and effectiveness, and on structure and process quality was performed with a special focus on lung cancer patients. As a consequence, this review particularly draws pneumologists' attention to improving their skills in communication with the patients, their relatives and among themselves, and to establish team structures with more far-reaching competences and continuity than existing multilateral cooperations and conferences can provide. Ideally, any process of structural and procedural improvement should be accompanied by scientific evaluation and measures for quality optimisation. PMID:25359341

Blum, Torsten; Schönfeld, Nicolas

2014-10-30

291

Asking questions of a palliative care nurse practitioner on a pancreatic cancer website.  

PubMed

Objective: Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. Method: Mixed-methods descriptive design. Results: There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people's questions. Significance of results: The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online. PMID:24909893

Grant, Marian S; Wiegand, Debra L; Dy, Sydney M

2014-06-01

292

[About palliative assistance for elderly patients (review)].  

PubMed

The State has the obligation to guarantee every person the right to palliative care access. Palliative care focuses on relieving the symptoms of the disease and preventing the patient's suffering at any stage of the illness. Comprehensive focus on patients' and families' emotional and spiritual needs as well as symptom management distinguishes palliative care from routine medical care. The aim of the study was to analyze the morbidity rate of the palliative patients in the Hospital of Nursing Care in Almaty. The investigation showed that all patients were hospitalized in accordance with the profile of the Hospital of Nursing Care. The medical and rehabilitation management of the patients is satisfactory. The research showed the necessity to develop and implement effective palliative care State programs to develop high quality hospice palliative care services in all towns of Kazakhstan with population over 100 thousands people. Thus every life-limited or life-threatened person in Kazakhstan will have access to high quality palliative care and support. PMID:24632650

2014-02-01

293

Measuring horizontal integration among health care providers in the community: an examination of a collaborative process within a palliative care network.  

PubMed

Abstract In many countries formal or informal palliative care networks (PCNs) have evolved to better integrate community-based services for individuals with a life-limiting illness. We conducted a cross-sectional survey using a customized tool to determine the perceptions of the processes of palliative care delivery reflective of horizontal integration from the perspective of nurses, physicians and allied health professionals working in a PCN, as well as to assess the utility of this tool. The process elements examined were part of a conceptual framework for evaluating integration of a system of care and centred on interprofessional collaboration. We used the Index of Interdisciplinary Collaboration (IIC) as a basis of measurement. The 86 respondents (85% response rate) placed high value on working collaboratively and most reported being part of an interprofessional team. The survey tool showed utility in identifying strengths and gaps in integration across the network and in detecting variability in some factors according to respondent agency affiliation and profession. Specifically, support for interprofessional communication and evaluative activities were viewed as insufficient. Impediments to these aspects of horizontal integration may be reflective of workload constraints, differences in agency operations or an absence of key structural features. PMID:25418319

Bainbridge, Daryl; Brazil, Kevin; Krueger, Paul; Ploeg, Jenny; Taniguchi, Alan; Darnay, Julie

2014-11-24

294

KernPaeP - a web-based pediatric palliative documentation system for home care.  

PubMed

KernPaeP is a new web-based on- and offline documentation system, which has been developed for pediatric palliative care-teams supporting patient documentation and communication among health care professionals. It provides a reliable system making fast and secure home care documentation possible. KernPaeP is accessible online by registered users using any web-browser. Home care teams use an offline version of KernPaeP running on a netbook for patient documentation on site. Identifying and medical patient data are strictly separated and stored on two database servers. The system offers a stable, enhanced two-way algorithm for synchronization between the offline component and the central database servers. KernPaeP is implemented meeting highest security standards while still maintaining high usability. The web-based documentation system allows ubiquitous and immediate access to patient data. Sumptuous paper work is replaced by secure and comprehensive electronic documentation. KernPaeP helps saving time and improving the quality of documentation. Due to development in close cooperation with pediatric palliative professionals, KernPaeP fulfils the broad needs of home-care documentation. The technique of web-based online and offline documentation is in general applicable for arbitrary home care scenarios. PMID:19745325

Hartz, Tobias; Verst, Hendrik; Ueckert, Frank

2009-01-01

295

Enabling the transition to hospice through effective palliative care  

Microsoft Academic Search

The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed by society as “failure” and even “optional.” Too often, referral to hospice has come too late to be sufficiently effective. While

Patricia A. Bomba

2005-01-01

296

The International Conference on Malignant Bowel Obstruction: A Meeting of the Minds to Advance Palliative Care Research  

Microsoft Academic Search

There is a dearth of well-designed clinical research focusing on palliative care in cancer patients, especially those who are near the end of life. Reasons for this include ethical dilemmas in conducting such trials, communication barriers between specialties, and unclear standards for best care practices. To ensure that patients with incurable illnesses are offered the best available care, it is

Robert S. Krouse

2007-01-01

297

Quality of life survey and palliative care in lung cancer patients  

PubMed Central

Aim. In patients with advanced and/or inoperable bronchial tumors, methods of palliative care such as radiotherapy, chemotherapy, brachytherapy and cryotherapy, singly and/or in combination, aiming at extending the survival time and improving the quality of life, were examined. Methods. One hundred and sixty three (163) patients, with mean age 67.9 yrs (range 22-25) and a male/female ratio at 1.34/1, treated between 2000-2004 were studied. Eighty one (81) patients receiving only cryotherapy presented a two-year survival rate at 19.3%, whilst eighty three (83) patients treated with radiotherapy or brachytherapy and/or chemotherapy showed a two-year survival rate at 25%. Sixty-five percent (65%) of patients only cryotreated had improvement in at least one or more Karnofsky and WHO indices. Results. Eighty percent (80%) of patients who received cryotherapy accompanied with supplementary palliative treatment showed amelioration of their clinical status. Conclusion. It seems that for patients with advanced or inoperable lung tumors, cryotherapy associated with additional palliative care may influence the survival time and improve their quality of life. PMID:22087054

Zoganas, L; Bablekos, G; Maiwand, M; Charalabopoulos, A; Andronadi, V; Batistatou, A; Vergoulas, G; Charalabopoulos, K

2006-01-01

298

Sickle Cell Disease: An Opportunity for Palliative Care across the Life Span  

PubMed Central

Sickle cell disease is a chronic illness that impacts patients physically and emotionally and can do so at an early age. An ecological model of palliative care that involves improved communication among the health care team, patients, and their families can be beneficial. Open and honest communication regarding advance care planning, disease management, relief of pain and other symptoms, and bereavement and grief are all important for the patient, family, and health care team. Given the multiple acute and chronic complications of sickle cell disease, an approach to care that is holistic and comprehensive may help to improve a patient’s biological function and the perceived health, functional status, and quality of life of the patient and family. PMID:20804884

Johnson, Bonnye; Mack, A. Kyle; Labotka, Richard; Molokie, Robert E.

2010-01-01

299

Management of Non-Pain Symptoms in Pediatric Palliative Care  

Microsoft Academic Search

The majority of children dying from a life-limiting condition suffer from distressing symptoms during their last weeks of life. The provision of current state-of-the-art symptom control is paramount for any health care professional working with dying children, but treatment guidelines are sparse. This article reviews the management of integrative and pharmacological therapies for acute seizure control, anorexia, death rattle, dyspnea,

Stefan J. Friedrichsdorf; John J. Collins

2007-01-01

300

National Hospice and Palliative Care Organization: Find a Hospice Program  

NSDL National Science Digital Library

The National Hospice Organization, "the oldest and largest nonprofit public benefit organization devoted exclusively to hospice care," provides a simple hospice database for the US. Enter the two letter postal abbreviation of the state you are interested in (or click on an interactive map), and hospice information is retrieved by county. Each entry contains hospice name, location, phone number, and contact information. National Hospice Organization members are indicated. State hospice organization contact information is also available. The NHO site provides background on the organization itself, a section on the basics of hospice, and twenty commonly asked questions about hospice.

301

Palliative care needs of HIV exposed and infected children admitted to the inpatient paediatric unit in Uganda  

PubMed Central

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-limiting conditions and also for their families. It is a response to the suffering and unique needs of such children. Globally there is limited documented data available on the palliative care needs of children with HIV. A retrospective review of data of all the HIV exposed and positive children who were admitted to the ward from January to December 2012 was done to document their palliative care needs. A total of 243 children were admitted to the ward during the stated period. Of these, 139 (57.2%) were female and 104 (42.8%) were male. Among them 131 (54%) were aged five years and below whereas 112 (46%) were above five years. Some of the identified palliative care needs documented included physical needs: pneumonia 46 (19%), severe acute malnutrition 38 (16%), mild and moderate acute malnutrition 23 (9.6%), and respiratory tract infections 22 (9.3%). Social needs: poor social support 21 (41%), financial instability 16 (31%), and child neglect 4 (8%). Psychological needs: antiretroviral treatment (ART) counselling 127 (36%), HIV counselling and testing for the child and family 63 (18%), adherence support 53 (15%), and others 11 (3%). Spiritual needs: discontinuing ART because of belief in spiritual healing 18 (81%), loss of hope because of severe ill health 1 (5%), and others 3 (14%). These results emphasise the need for palliative care in children with HIV even in the era of ART. The needs identified are in keeping with studies done elsewhere and are similar to the palliative care needs of children with other life-limiting illnesses such as cancer. Conclusion HIV positive and exposed children plus their families have vast palliative care needs and a holistic approach is the key in their management.

Nakawesi, Jane; Kasirye, Ivy; Kavuma, David; Muziru, Benjamin; Businge, Alice; Naluwooza, Jackie; Kabunga, Grace; Karamagi, Yvonne; Akankwasa, Edith; Odiit, Mary; Mukasa, Barbara

2014-01-01

302

The invisible homebound: setting quality-of-care standards for home-based primary and palliative care.  

PubMed

Approximately four million adults in the United States are homebound, and many of them cannot access office-based primary care. Home-based medical care can improve outcomes and reduce health care costs, but this care operates in a quality measurement desert, having been largely left out of the national conversation on care quality. To address this shortcoming, two of the authors created the National Home-Based Primary and Palliative Care Network, an organization whose members include exemplary home-based medical practices, professional societies, and patient advocacy groups. This article describes the current status of home-based medical care in the United States and offers a brief narrative of a fictional homebound patient and the health events and fragmented care she faces. The article then describes the network's quality-of-care framework, which includes ten quality-of-care domains, thirty-two standards, and twenty quality indicators that are being tested in the field. The same two authors also developed a practice-based registry that will be used for quality-of-care benchmarking, practice-based quality improvement, performance reporting, and comparative effectiveness research. Together, these steps should help bring home-based medical care further into the mainstream of US health care. PMID:25561640

Leff, Bruce; Carlson, Charlotte M; Saliba, Debra; Ritchie, Christine

2015-01-01

303

The net effect: spanning diseases, crossing borders—highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care  

PubMed Central

The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care. PMID:24222787

Downing, J; Namisango, E; Kiyange, F; Luyirika, E; Gwyther, L; Enarson, S; Kampi, J; Sithole, Z; Kemigisha-Ssali, E; Masclee, M; Mukasa, I

2013-01-01

304

[The need for palliative care treatment in pneumology in non-malignant diseases--a case report].  

PubMed

A 70-year-old pneumological patient with a COLD for many years, who was using long-term oxygen therapy, developed a complex clinical presentation. During his inpatient course over several weeks we treated severe physical symptoms such as shortness of breath, anxiety and pain. After the transfer to the palliative care ward only an inpatient final accompaniment was possible. In this case the palliative care expertise was integrated too late into the process of the therapy. The delay led to a poorer control of severe physical symptoms such as those named above. Also, the patients request for comprehensive ambulant care could not be realised because the severity of the disease was not detected soon enough. Instruments for the evaluation of the need for an additional palliative care treatment in patients with a non-malignant pneumological disease have not been established sufficiently. PMID:22477484

Nehls, W; Delis, S; Black, N; Gabrijel, S; Albrecht, H; Bauer, T T

2012-04-01

305

Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant.  

PubMed

Objective: When infants are at risk of being born at a very premature gestation (22-25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers. Methods: Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme "Quality of Interactions." These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions. Results: Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for). Significance of Results: Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement. PMID:24183005

Kavanaugh, Karen; Roscigno, Cecelia I; Swanson, Kristen M; Savage, Teresa A; Kimura, Robert E; Kilpatrick, Sarah J

2013-11-01

306

Intentions in wishes to die: analysis and a typology – A report of 30 qualitative case studies of terminally ill cancer patients in palliative care  

PubMed Central

Objective To investigate the variations in and intentions of wishes to die (WTD) of palliative care cancer patients. Methods Thirty terminally ill cancer patients, their caregivers and relatives in a hospice, an oncology palliative care ward of a general hospital, and an outpatient palliative care service. 116 semistructured qualitative interviews analyzed by a combined approach using Grounded Theory and Interpretive Phenomenological Analysis. Results A WTD is dynamic and interactive. Its subjective phenomenology can be described by three aspects: intentions, motivations, and interactions. In this article, we present a typology of the possible intentions. We identified nine different (ideal) types of intentions that WTD statements might have, other than wishing to live and accepting death. Many WTD statements do not imply a desire to hasten death. The intentions of statements differ according to whether a WTD is related to as imaginary or as an action. Often WTD statements contain several partial wishes, which can be in tension with each other and form a dynamic, sometimes unstable equilibrium. Conclusions Terminally ill persons' WTD statements differ in their intention, and deeper knowledge about these differences is ethically relevant. PMID:24706488

Ohnsorge, K; Gudat, H; Rehmann-Sutter, C

2014-01-01

307

Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.  

PubMed

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach. PMID:23336338

Bergdahl, Elisabeth; Benzein, Eva; Ternestedt, Britt-Marie; Elmberger, Eva; Andershed, Birgitta

2013-12-01

308

Emergency department-initiated palliative care for advanced cancer patients: protocol for a pilot randomized controlled trial  

PubMed Central

Background For patients with advanced cancer, visits to the emergency department (ED) are common. Such patients present to the ED with a specific profile of palliative care needs, including burdensome symptoms such as pain, dyspnea, or vomiting that cannot be controlled in other settings and a lack of well-defined goals of care. The goals of this study are: i) to test the feasibility of recruiting, enrolling, and randomizing patients with serious illness in the ED; and ii) to evaluate the impact of ED-initiated palliative care on health care utilization, quality of life, and survival. Methods/Design This is a protocol for a single center parallel, two-arm randomized controlled trial in ED patients with metastatic solid tumors comparing ED-initiated palliative care referral to a control group receiving usual care. We plan to enroll 125 to 150 ED-advanced cancer patients at Mount Sinai Hospital in New York, USA, who meet the following criteria: i) pass a brief cognitive screen; ii) speak fluent English or Spanish; and iii) have never been seen by palliative care. We will use balanced block randomization in groups of 50 to assign patients to the intervention or control group after completion of a baseline questionnaire. All research staff performing assessment or analysis will be blinded to patient assignment. We will measure the impact of the palliative care intervention on the following outcomes: i) timing and rate of palliative care consultation; ii) quality of life and depression at 12 weeks, measured using the FACT-G and PHQ-9; iii) health care utilization; and iv) length of survival. The primary analysis will be based on intention-to-treat. Discussion This pilot randomized controlled trial will test the feasibility of recruiting, enrolling, and randomizing patients with advanced cancer in the ED, and provide a preliminary estimate of the impact of palliative care referral on health care utilization, quality of life, and survival. Trial registration Clinical Trials.gov identifier: NCT01358110 (Entered 5/19/2011). PMID:24962353

2014-01-01

309

Palliative Care  

MedlinePLUS

... Treatment Life After Cancer Research Scientific Advisory Council Acceleration Initiative Young Investigators Clinical Trials Hospitals We Support ... Options Treatment Side Effects What is Cancer? Research Acceleration Initiative Clinical Trials Hospitals We Support Research in ...

310

Palliative Care  

MedlinePLUS

... Liver Disease Lung Cancer Multiple Myeloma Ovarian Cancer Pancreatic Cancer Parkinson’s Disease Prostate Cancer Stroke Stories Glossary FAQ ... Liver Disease Lung Cancer Multiple Myeloma Ovarian Cancer Pancreatic Cancer Parkinson’s Disease Prostate Cancer Stroke Stories Glossary FAQ ...

311

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

PubMed

This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population. PMID:22399044

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

2012-02-01

312

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

PubMed

Although the popularity of complementary indigenous Malay therapies (CIMT) in general healthcare is undeniable in the Malaysian context today, their usage within the palliative care scenarios remains unexplored. Our study was specifically embarked to determine CIMT’s usage pattern, reasons, attitudes, beliefs, perceptions and health-related quality of life (HRQoL) differences (users vs. non-users) in a sample of hospice-based palliative patients in Selangor, Malaysia. From the 39 consenting patients (mean age = 56 years; female = 56.4 percent; Malay = 53.8 percent), 38.5 percent were users of CIMT. Dried medicinal roots, herbs and sea cucumber products were the most preferred types of CIMT (53.3 percent). The most common reason cited for usage was because these were "easier and simpler to be administered" (46.7 percent). Although users' attitudes, beliefs and perceptions were more favourable than the non-users, between 30.0-73.3 percent of users remained unsure or had no knowledge regarding CIMT. They also exhibited significantly poorer Physical Symptoms than the non-users (p=0.006), a probable motive for seeking CIMT in the first place. Despite the small sample size, the findings provided some insight into the role of CIMT especially with regard to usage trends and overall well-being among the terminally-ill, of which healthcare professionals should constantly be vigilant of amidst their routine care responsibilities. PMID:22754943

Lua, Pei Lin

2011-01-01

313

Music therapy in palliative medicine  

Microsoft Academic Search

A partnership between The Cleveland Clinic Foundation and The Cleveland Music School Settlement has resulted in music therapy becoming a standard part of the care in our palliative medicine inpatient unit. This paper describes a music therapy program and its impact on patients, their families, and staff. A service delivery model is suggested for implementation and integration of music therapy

Lisa M. Gallagher; Molly J. Huston; Kristine A. Nelson; Declan Walsh; Anita Louise Steele

2001-01-01

314

Proactive Case Finding to Concurrently Improve Curative and Palliative Care in Patients with End-Stage Liver Disease.  

PubMed

Abstract Background: Palliative care and preparation for liver transplantation are often perceived as conflicting for patients with end-stage liver disease (ESLD). We sought to improve both simultaneously through a case finding and care coordination quality improvement intervention. Methods: We identified patients with cirrhosis using validated ICD-9 codes and screened them for ESLD by assessing medical records at a VA hospital for either a model for end-stage liver disease (MELD) ?14 or a diagnosis of hepatocellular carcinoma (HCC) between October 2012 and January 2013. A care coordinator followed veterans from the index hospitalization through April 2013 and encouraged treating physicians to submit liver transplant evaluation consults for all veterans with a MELD ?14 and palliative care consults for all veterans with a MELD ?20 or inoperable HCC. Results: We compared rates of consultation for 49 hospitalized veterans and compared their outcomes to 61 pre-intervention veterans. Veterans were more likely to be considered for liver transplantation (77.6% versus 31.1%, p<0.001) and receive palliative care consultation during the intervention period, although the latter finding did not reach statistical significance (62.5% versus 47.1%, p=0.38). Conclusions: Active case finding improved consideration for liver transplantation without decreasing palliative care consultation. PMID:25493552

Walling, Anne M; Schreibeis-Baum, Hannah; Pimstone, Neville; Asch, Steven M; Robinson, Linda; Korlekar, Sheri; Lorenz, Karl; Nwajuaku, Tracy; Rosenfeld, Kenneth

2014-12-10

315

An Analytical Framework for Delirium Research in Palliative Care Settings: Integrated Epidemiologic, Clinician-Researcher, and Knowledge User Perspectives  

PubMed Central

Context Delirium often presents difficult management challenges in the context of goals of care in palliative care settings. Objectives The aim was to formulate an analytical framework for further research on delirium in palliative care settings, prioritize the associated research questions, discuss the inherent methodological challenges associated with relevant studies, and outline the next steps in a program of delirium research. Methods We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting, relevant literature searches, focused input of epidemiologic expertise, and a meeting participant and coauthor survey to formulate a conceptual research framework and prioritize research questions. Results Our proposed framework incorporates three main groups of research questions: the first was predominantly epidemiologic, such as delirium occurrence rates, risk factor evaluation, screening, and diagnosis; the second covers pragmatic management questions; and the third relates to the development of predictive models for delirium outcomes. Based on aggregated survey responses to each research question or domain, the combined modal ratings of “very” or “extremely” important confirmed their priority. Conclusion Using an analytical framework to represent the full clinical care pathway of delirium in palliative care settings, we identified multiple knowledge gaps in relation to the occurrence rates, assessment, management, and outcome prediction of delirium in this population. The knowledge synthesis generated from adequately powered, multicenter studies to answer the framework’s research questions will inform decision making and policy development regarding delirium detection and management and thus help to achieve better outcomes for patients in palliative care settings. PMID:24726762

Ansari, Mohammed; Hosie, Annmarie; Kanji, Salmaan; Momoli, Franco; Bush, Shirley H.; Watanabe, Sharon; Currow, David C.; Gagnon, Bruno; Agar, Meera; Bruera, Eduardo; Meagher, David J.; de Rooij, Sophia E.J.A.; Adamis, Dimitrios; Caraceni, Augusto; Marchington, Katie; Stewart, David J.

2014-01-01

316

Symptom burden in hospitalized patients with cancer in kuwait and the need for palliative care.  

PubMed

We conducted this study to describe the symptom burden among hospitalized patients with cancer in a Kuwaiti cancer center. Twenty physical symptoms were assessed in 45 patients with cancer. The majority (82%) of patients had an advanced incurable cancer and 42% were receiving best supportive care only. The median number of symptoms per patient was 6.4 ± 2.8. The most common symptoms were pain (82%), weakness/fatigue (80%), anorexia (67%), weight loss (49%), and dyspnea (42%). Pain was the most distressing symptom in 31% of patients, followed by dyspnea (24%) and weakness/fatigue (11%). The high prevalence of advanced disease and the demonstrated high symptom burden mandate the initiation and development of culturally sensitive palliative care models, especially hospital-based ones, to relieve the suffering of patients with cancer in Kuwait. PMID:20228359

Alshemmari, Salem; Ezzat, Hanan; Samir, Zainab; Sajnani, Kamlesh; Alsirafy, Samy

2010-11-01

317

A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care.  

PubMed

Demoralization has been the subject of discussion in relation to end-of-life care. It is characterized by hopelessness and helplessness due to a loss of purpose and meaning. The purpose of this review was to consolidate the conceptual understanding of demoralization and argue for its existence as a psychiatric syndrome. The history of the construct is explored, including the nature of existential distress and related psychological conditions that precipitate demoralization. Recent definitions of demoralization are described and differentiated from similar constructs. Future directions are highlighted, specifically in relation to the assessment, diagnosis, and treatment of demoralization in palliative care. Overall, demoralization is a clinically useful construct for those facing existential threat, guiding the clinician toward efforts to restore morale, meaning, and purpose. PMID:25294224

Robinson, Sophie; Kissane, David W; Brooker, Joanne; Burney, Susan

2014-10-01

318

From Qualitative Work to Intervention Development in Pediatric Oncology Palliative Care Research  

PubMed Central

Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers. PMID:23632900

Gilmer, Mary Jo; Friedman, Debra L.; Given, Barbara; Hendricks-Ferguson, Verna L.; Hinds, Pamela S.

2013-01-01

319

Reflective practice and palliative care education: a clerkship responds to the informal and hidden curricula.  

PubMed

The authors discuss the damaging influence of informal and hidden curricula on medical students and describe a two-week clerkship in palliative care and clinical ethics at their school (Weill Medical College of Cornell University). This required clerkship, begun in 1999, uses reflective practice and a special pedagogic technique, participant observation, to counteract the influences of the informal and hidden curricula. This technique seeks to immerse the participant observer in the context of care. In their role as participant observers, students are relieved of any direct clinical responsibilities for two weeks so they have time for the careful observation and reflection required and also can consider the humanistic dimensions of practice, which are often displaced by the need to master diagnostic and therapeutic skills. Course objectives include identifying psychosocial and contextual factors that influence care, principles of pain and symptom management, and ethical and legal issues at the end of life. Students are expected to learn how to apply ethical norms to patient care, describe methods of pain and symptom management, communicate in an effective and humanistic manner, and articulate models of patient-centered advocacy. The clerkship fosters professionalism in patient care, appreciation of cultural diversity, and the student's ability to assume responsibility for developing competency in these areas. Although it is too early to know whether this clerkship will ultimately affect the practice patterns of students who experience it, short-term evaluation has been very favorable. PMID:12634214

Fins, Joseph J; Gentilesco, Bethany J; Carver, Alan; Lister, Philip; Acres, Cathleen A; Payne, Richard; Storey-Johnson, Carol

2003-03-01

320

Refractory pain, existential suffering, and palliative care: releasing an unbearable lightness of being.  

PubMed

Since the beginning of the hospice movement in 1967, "total pain management" has been the declared goal of hospice care. Palliating the whole person's physical, psychosocial, and spiritual states or conditions is central to managing the pain that induces suffering. At the end-stage of life, an inextricable component of the ethics of adjusted care requires recognition of a fundamental right to avoid cruel and unusual suffering from terminal illness. This Article urges wider consideration and use of terminal sedation, or sedation until death, as an efficacious palliative treatment and as a reasonable medical procedure in order to safeguard the "right" to a dignified death. Once the state establishes a human right to avoid refractory pain of whatever nature in end-stage illness, a coordinate responsibility must be assumed by health care providers to make medical judgments consistent with preserving the best interests of a patient's quality of life by alleviating suffering. The principle of medical futility is the preferred construct for implementing this professional responsibility. Rather than continue to be mired in the vexatious quagmire of the doctrine of double effect--all in an effort to "test" whether end-stage decisions by health care providers are licit or illicit--a relatively simple test of proportionality, or cost-benefit analysis, is proffered. Imbedded, necessarily, in this equation is the humane virtue of compassion, charity, mercy or agape. Assertions of state interest in safeguarding public morality by restricting intimate associational freedoms to accelerate death in a terminal illness are suspicious, if, indeed, not invalid. No terminally ill individual suffering from either intractable somatic or non-somatic pain, or both, should be forced to continue living. PMID:25330560

Smith, George P

2011-01-01

321

The model of palliative care in the perinatal setting: a review of the literature  

PubMed Central

Background The notion of Palliative Care (PC) in neonatal and perinatal medicine has largely developed in recent decades. Our aim was to systematically review the literature on this topic, summarise the evolution of care and, based on the available data, suggest a current standard for this type of care. Methods Data sources included Medline, the Cochrane Library, CINAHL, and the bibliographies of the papers retrieved. Articles focusing on neonatal/perinatal hospices or PC were included. A qualitative analysis of the content was performed, and data on the lead author, country, year, type of article or design, and direct and indirect subjects were obtained. Results Among the 1558 articles retrieved, we did not find a single quantitative empirical study. To study the evolution of the model of care, we ultimately included 101 studies, most of which were from the USA. Fifty of these were comments/reflections, and only 30 were classifiable as clinical studies (half of these were case reports). The analysis revealed a gradual conceptual evolution of the model, which includes the notions of family-centered care, comprehensive care (including bereavement) and early and integrative care (also including the antenatal period). A subset of 27 articles that made special mention of antenatal aspects showed a similar distribution. In this subset, the results of the four descriptive clinical studies showed that, in the context of specific programmes, a significant number of couples (between 37 and 87%) opted for PC and to continue with the pregnancy when the foetus has been diagnosed with a lethal illness. Conclusions Despite the interest that PC has aroused in perinatal medicine, there are no evidence-based empirical studies to indicate the best model of care for this clinical setting. The very notion of PC has evolved to encompass perinatal PC, which includes, among other things, the idea of comprehensive care, and early and integrative care initiated antenatally. PMID:22409881

2012-01-01

322

Comparing end-of-life care in hospitalized patients with chronic obstructive pulmonary disease with and without palliative care in Taiwan  

PubMed Central

Background: We investigated the difference of clinical practice pattern between end-stage chronic obstructive pulmonary disease (COPD) patients with and without palliative care at the end of life in Taiwan. Materials and Methods: A total of 91 COPD patients who died in an acute care hospital were enrolled from one community teaching hospital in northern Taiwan between September 1, 2007 and December 31, 2009. The patients were divided into palliative (n = 17) and non-palliative care (n = 74) groups. Demographics and medical care data obtained through retrospective review of medical records were analyzed to determine significant between-group differences. Results: There were no between-group differences in intensive care unit (ICU) utilization, duration of ICU stay, duration of ventilator usage, invasive diagnostic procedures, invasive treatments, medications, and total medical cost. Patients in the palliative group had longer hospital stays (median 26 days vs. 11 days, P < 0.01) and higher rate of do-not-resuscitate orders (100% vs. 51%, P < 0.001), but lower rates of ICU mortality (73% vs. 41%, P = 0.026), invasive ventilation (57% vs. 29%, P = 0.04), cardiopulmonary resuscitation (12% vs. 51%, P < 0.001), and daily medical cost (250 US dollars vs. 444 US dollars, P < 0.001). Conclusion: Palliative care was underutilized and referral was delayed for COPD patients. COPD patients are polysymptomatic approaching the end of life and this characteristic should be taken into account in providing appropriate end-of-life care in the same way as for cancer patients. Palliative care for COPD patients is urgently needed in Taiwan and should be promoted. PMID:24516493

Chou, Wen-Chi; Lai, Yu-Te; Hung, Yu-Shin

2013-01-01

323

It is Not Where You Die, But Who is With You When You Die: Evolving Palliative Care Practices Among Marshall Islanders in Hawai‘i  

PubMed Central

Introduction Many Marshall Islanders seek healthcare services in Hawai‘i. Little is known about traditional Marshallese palliative care practices. Our purpose was to learn about traditional Marshallese palliative care practices to provide culturally appropriate care. Methods We performed 2 focus groups in 2011–2012 among Marshall Islanders living in or visiting the island of Oahu, Hawai‘i. Group facilitators were uniformly trained to conduct focus groups using prepared script, with a native speaking interpreter. Data were analyzed using classical thematic triangulation methods to identify specific Marshallese palliative care practices and the effect of economic and social challenges in Hawai‘i. Results Six females and seven males, ages 46–79 years, participated. A “good death” was defined as “peaceful and pain free,” occurring naturally with avoidance of artificial life prolongation. Factors associated with a “good death” included gathering of family to absolve conflicts, and proper and timely cultural practices such as Ilomej (wake) and Eorak (post-burial memorial service). Dying at home is the norm among people living in the Marshall Islands. After migrating to Hawai‘i, having family present at the time of death was more important than the actual locale of death. Factors associated with “bad deaths” included young age, active suffering, accidents, suicides, or “black magic/curses,” lack of timely burial or proper burial site. Barriers included mortuary fees, cost of transporting bodies, US government policies, and wait times for death certificates. Conclusions There are many underlying cultural factors contributing to “good or bad” death. Overcoming identified barriers may facilitate cultural practices necessary for a good death.

Okamoto, Lauren; Riklon, Sheldon; Maskarinec, Gregory

2013-01-01

324

The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home  

PubMed Central

Background The focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death. The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention. Methods/Design DOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options. Discussion Programs that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients’ quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient’s preferred place of care and attempt to clarify challenges. Trial registration Clinicaltrials.gov Identifier: NCT01885637 PMID:25242890

2014-01-01

325

Role of the speech-language pathologist in palliative hospice care.  

PubMed

In reviewing the literature, there are few articles describing the role of the speech-language pathologist in hospice. Communication impairments can impact upon the hospice team's ability to provide symptom control and supportive psychosocial care, and diminish the patient's ability to guide the decision making process and maintain social closeness with family. Swallowing difficulties may result in discomfort for patients and concern from caregivers. Patient care provided by the speech-language pathologist can align with the framework of the World Health Organization's components of palliative care. Four primary roles of the speech-language pathologist in hospice can be described. (1) To provide consultation to patients, families, and members of the hospice team in the areas of communication, cognition, and swallowing function; (2) To develop strategies in the area of communication skills in order to support the patient's role in decision making, to maintain social closeness, and to assist the client in fulfillment of end-of-life goals; (3) To assist in optimizing function related to dysphagia symptoms in order to improve patient comfort and eating satisfaction, and promote positive feeding interactions for family members and (4) To communicate with members of the interdisciplinary hospice team, to provide and receive input related to overall patient care. Further development of the speech-language pathologist as a participating member of the hospice interdisciplinary team would support the overall goal of providing quality care for patients and families served by hospice. PMID:15588361

Pollens, Robin

2004-10-01

326

Does quality of life assessment in palliative care look like a complex screening program?  

PubMed Central

Background Palliative Care (PC) is an approach that improves the Quality of Life (QoL). A number of QoL assessment tools have been developed and validated in PC. It is not clear how QoL should be measured in PC practice. A procedure of QoL assessment in clinical practice can be defined as a clinical intervention focused on QoL assessment. This is a typical complex intervention that should be appropriately developed and described in all its components and assessed for its effectiveness. The aim of this study is to define a framework to help researchers to develop and evaluate clinical interventions focused on QoL assessment in PC. Methods A study group of experts in PC and in research methodology was set up to define a framework that would describe the principles of clinical interventions focused on QoL assessment in PC. The study group discussed the WHO Population Screening Principles as a possible useful framework. The new principles had to be developed taking into account the following criteria: 1) specific to PC practice; 2) address a single underlying characteristic; 3) anchored to relevant literature; 4) consistent with the WHO PC definition. With regard to contents and the format of the principles, discussions occurred among the study group members through a cognitive process. Results We reviewed each of the WHO Population Screening Principles and adapted them to QoL assessment, taking into account the defined criteria. As a result, a new framework, the QoL Assessment Principles in Palliative Care was developed. It consisted of 4 sections, for a total of 11 principles. Conclusions The WHO Screening Principles framework was used to outline the eleven essential principles to be considered in developing and/or evaluating clinical interventions focused on QoL assessment in PC. The QoL Assessment Principles in Palliative Care identified could represent a methodological and ethical standard to be considered when developing and evaluating a clinical intervention focused on QoL assessment in PC. PMID:23317347

2013-01-01

327

The effect and process evaluations of the national quality improvement programme for palliative care: the study protocol  

PubMed Central

Background The nationwide integration of palliative care best practices into general care settings is challenging but important in improving the quality of palliative care. This is why the Dutch National Quality Improvement Programme for Palliative Care has recently been launched. This four-year programme consists of about 70 implementation trajectories of best practices. A large evaluation study has been set up to evaluate this national programme and separate implementation trajectories. Methods/Design This paper presents the protocol of the evaluation study consisting of a quantitative effect evaluation and a qualitative process evaluation. The effect evaluation has a pre-test post-test design, with measurements before implementation (month 0) and after implementation (month 9) of a best practice. Patients are eligible if they have a life expectancy of less than six months and/or if they are undergoing palliative treatment and provided they are physically and mentally capable of responding to questionnaires. Bereaved relatives are eligible if they have been involved in the care of a deceased patient who died after a sickbed between six weeks and six months ago. Three types of measurement instruments are used: (1) numerical rating scales for six symptoms (pain, fatigue, breathlessness, obstipation, sadness and anxiety), (2) the Consumer Quality Index Palliative Care - patient version and (3) the version for bereaved relatives. The process evaluation consists of analysing implementation plans and reports of the implementation, and individual and group interviews with healthcare professionals. This will be done nine to eleven months after the start of the implementation of a best practice. Discussion This mixed-method evaluation study gives more insight into the effects of the total programme and the separate implementation trajectories. However, evaluation of large quality improvement programmes is complicated due to changing, non-controlled environments. Therefore, it is important that an effect evaluation is combined with a process evaluation. Trial registration NTR-4085 PMID:24555536

2014-01-01

328

Spirituality, psychotherapy and music in palliative cancer care: research projects in psycho-oncology at an oncology center in Switzerland  

Microsoft Academic Search

It is recognized as increasingly important in palliative care that spiritual needs of terminally ill patients should be acknowledged and addressed. Two research projects investigated the feasibility of psychotherapeutic and music therapeutic assistance offered to advanced cancer patients. The first project (1998–2000) sought to improve the understanding of the effect of therapeutic support given to 80 patients and the characteristics

Monika Renz; Miriam Schütt Mao; Thomas Cerny

2005-01-01

329

Crying in solitude or with someone for support and consolation--experiences from family members in palliative home care.  

PubMed

Crying has not been studied from the perspective of family members of patients in palliative care. The aim of this study was to explore the significance of family members crying in a palliative care context with special reference to factors that influence crying. Interviews were carried out with 14 family members of patients admitted to palliative care. A hermeneutic approach according to Gadamer was used. Three main categories emerged. (1) Before the start of crying, some prerequisites for crying had to be fulfilled, such as an allowing attitude and courage, time, feeling secure, honesty, and trusting relationships. These prerequisites did not cause crying themselves; rather crying emerged when triggering factors occurred. (2) Triggers for crying were circumstances that created uncertainty and turbulence (bad news), exhaustion due to lack of own time, and sympathy from others. (3) Family members tried to do the best possible by adopting or hiding their crying, to ease the patient's burden and to create a positive counterbalance to suffering and grief. As an interpretation of the whole, crying could be expressed as being shared with someone for support and consolation or escape to solitude for integrity and respite. As a conclusion, crying may be an efficient strategy for family members in palliative care to express their suffering and to gain new energy to continue. PMID:18772658

Rydé, Kerstin; Strang, Peter; Friedrichsen, Maria

2008-01-01

330

Depression means different things: A qualitative study of psychiatrists' conceptualization of depression in the palliative care setting.  

PubMed

Objective: Medical practitioners conceptualize depression in different ways, which adds to the challenges of its diagnosis and treatment, as well as research in the palliative care setting. Psychiatric assessment is often considered the "gold standard" for diagnosis, therefore how psychiatrists conceptualize depression in this setting is pertinent. Our study aimed to investigate this issue. Method: Psychiatrists working in palliative care in Australia were individually interviewed using a semistructured approach. Nine participants were interviewed to reach data saturation. Interview transcripts were analyzed for themes. Results: Three overarching themes were identified: (1) depression means different things; (2) depression is conceptualized using different models; and (3) depression is the same concept within and outside of the palliative care setting. Participants explicitly articulated the heterogeneous nature of depression and described a different breadths of concepts, ranging from a narrow construct of a depressive illness to a broader one that encompassed depressive symptoms and emotions. However, depressive illness was a consistent concept, and participants considered this in terms of phenotypic subtypes. Participants used three models (spectral, dichotomous, and mixed) to relate various depressive presentations. Significance of Results: Psychiatrists did not subscribe to a unitary model of depression but understood it as a heterogeneous concept comprised of depressive illness and other less clearly defined depressive presentations. Given the influence of psychiatric opinion in the area of depression, these findings may serve as a platform for further discussions to refine the concepts of depression in the palliative care setting, which in turn may improve diagnostic and treatment outcomes. PMID:25331292

Ng, Felicity; Crawford, Gregory B; Chur-Hansen, Anna

2014-10-21

331

What works for therapists conducting family meetings: treatment integrity in family-focused grief Therapy during palliative care and bereavement  

Microsoft Academic Search

The purpose of this study was to evaluate the treatment integrity of Family-Focused Grief Therapy (FFGT), a preventive intervention designed for families at high risk of poor functioning during palliative care and bereavement. From the 81 families participating in a randomized controlled trial (53 assigned to therapy), 28 were randomly selected for this study of treatment fidelity using the FFGT

Eunice K. H. Chan; Imogen O'Neill; Maria McKenzie; Anthony Love; David W. Kissane

2004-01-01

332

Outcomes 'out of africa': the selection and implementation of outcome measures for palliative care in Africa  

PubMed Central

Background End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa. Methods An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010. Results 168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use. Conclusion This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa. PMID:22221932

2012-01-01

333

Health care's service fanatics.  

PubMed

The Cleveland Clinic has long had a reputation for medical excellence. But in 2009 the CEO acknowledged that patients did not think much of their experience there and decided to act. Since then the Clinic has leaped to the top tier of patient-satisfaction surveys, and it now draws hospital executives from around the world who want to study its practices. The Clinic's journey also holds Lessons for organizations outside health care that must suddenly compete by creating a superior customer experience. The authors, one of whom was critical to steering the hospital's transformation, detail the processes that allowed the Clinic to excel at patient satisfaction without jeopardizing its traditional strengths. Hospital leaders: Publicized the problem internally. Seeing the hospital's dismal service scores shocked employees into recognizing that serious flaws existed. Worked to understand patients' needs. Management commissioned studies to get at the root causes of dissatisfaction. Made everyone a caregiver. An enterprisewide program trained everyone, from physicians to janitors, to put the patient first. Increased employee engagement. The Clinic instituted a "caregiver celebration" program and redoubled other motivational efforts. Established new processes. For example, any patient, for any reason, can now make a same-day appointment with a single call. Set patients' expectations. Printed and online materials educate patients about their stays--before they're admitted. Operating a truly patient-centered organization, the authors conclude, isn't a program; it's a way of life. PMID:23898737

Merlino, James I; Raman, Ananth

2013-05-01

334

Evaluation of an interprofessional practice placement in a UK in-patient palliative care unit.  

PubMed

This paper reports on undergraduate students' evaluation of a new hospice-based interprofessional practice placement (IPP) that took place in the voluntary sector from 2008 to 2009. Ward-based interprofessional training has been successfully demonstrated in a range of clinical environments. However, the multidisciplinary setting within a hospice in-patient unit offered a new opportunity for interprofessional learning. The development and delivery of the IPP initiative is described, whereby multidisciplinary groups of 12 students provided hands-on care for a selected group of patients, under the supervision of trained health care professionals. The placement was positively evaluated and students reported an increased understanding of both their own role and that of other professionals in the team. The evaluation also suggests that additional learning opportunities were provided by the in-patient palliative care unit. The results of this evaluation suggest that the in-patient unit of a hospice caring for patients with life-limiting illness provides a suitable environment to demonstrate and learn about interprofessional practice. PMID:21464121

Dando, Nicholas; d'Avray, Lynda; Colman, Jane; Hoy, Andrew; Todd, Jennifer

2012-03-01

335

Biofield Therapies for Symptom Management in Palliative and End-of-Life Care.  

PubMed

Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed. PMID:24259404

Henneghan, Ashley M; Schnyer, Rosa N

2015-02-01

336

Living with pain: the experience of children and adolescents in palliative care.  

PubMed

A qualitative study was conducted with semi-structured interviews with the aim of understanding the experience of children and adolescents under palliative care when managing pain daily and how they describe the intensity, quality and location of pain. We used Piaget's theory of cognitive development as a theoretical framework and oral history as a methodological framework. We found four themes: describing pain; seeking a life closer to normality, despite pain and disease; using a variety of alternatives for pain control; and living with damaged physical appearance. Although pain is a limiting factor in the lives of children and adolescents, we found that they faced their daily pain and still had a life beyond pain and illness. In addition, we highlight the relevance of nurses' understanding that effective management of pain in children is essential for a normal life and less suffering. PMID:25517837

Borghi, Camila Amaral; Rossato, Lisabelle Mariano; Damião, Elaine Buchhorn Cintra; Guedes, Danila Maria Batista; Silva, Ellen Maria Reimberg da; Barbosa, Silvia Maria de Macedo; Polastrini, Rita Tiziana

2014-08-01

337

Meanings of eating deficiencies for people admitted to palliative home care.  

PubMed

Objective: Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care. Method: This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method. Results: The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life. Significance of Results: Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating. PMID:25335943

Wallin, Viktoria; Carlander, Ida; Sandman, P-O; Håkanson, Cecilia

2014-10-22

338

Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome.  

PubMed

Objective: According to the World Health Organization (WHO), palliative care (PC) should be available to everyone suffering from life-threatening diseases and should be started early on in the illness trajectory. However, PC is often initiated much later and is restricted to cancer patients. There is a need for more knowledge about how early PC can be implemented in clinical practice. The purpose of our study was to document the best evidence on methods for early identification (EI) of palliative trajectories in cancer, chronic heart failure (CHF), and chronic obstructive pulmonary disease (COPD) populations, and to identify preconditions for early integration of general PC in hospitals and outcomes for patients and relatives. Method: A comprehensive systematic review of methods, preconditions, and outcomes was conducted via an electronic literature search of publications between 2002 and September 2012. A final sample of 44 papers was reviewed in detail. Results: Our study identified disease-specific and general methods for EI of patients who might benefit from PC. Prognostication of end-stage disease based on (holistic) clinical judgment, prognostic factors, and/or care needs are the most frequently recommended methods. A number of interacting disease-, staff-, user-, and organization-specific barriers need to be overcome in order to implement early integration of PC in clinical practice. Early integration of PC may lead to better symptom management, prolonged survival, and better quality of life. Significance of Results: No methods can be recommended for routine clinical practice without further validation. There is an urgent need to develop and evaluate methods based on the holistic assessment of symptoms or needs. The barriers to early integration of PC are most extensive with regard to CHF and COPD. Professional training and education are recommended to facilitate early implementation of PC. The evidence about outcome is sparse and mostly relates to cancer populations receiving specialized PC. PMID:24621947

Dalgaard, Karen Marie; Bergenholtz, Heidi; Nielsen, Marianne Espenhain; Timm, Helle

2014-03-13

339

Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies  

PubMed Central

Background Volunteers make a major contribution to palliative patient care, and qualitative studies have been undertaken to explore their involvement. With the aim of making connections between existing studies to derive enhanced meanings, we undertook a systematic review of these qualitative studies including synthesising the findings. We sought to uncover how the role of volunteers with direct contact with patients in specialist palliative care is understood by volunteers, patients, their families, and staff. Methods We searched for relevant literature that explored the role of the volunteer including electronic citation databases and reference lists of included studies, and also undertook handsearches of selected journals to find studies which met inclusion criteria. We quality appraised included studies, and synthesised study findings using a novel synthesis method, thematic synthesis. Results We found 12 relevant studies undertaken in both inpatient and home-care settings, with volunteers, volunteer coordinators, patients and families. Studies explored the role of general volunteers as opposed to those offering any professional skills. Three theme clusters were found: the distinctness of the volunteer role, the characteristics of the role, and the volunteer experience of the role. The first answers the question, is there a separate volunteer role? We found that to some extent the role was distinctive. The volunteer may act as a mediator between the patient and the staff. However, we also found some contradictions. Volunteers may take on temporary surrogate family-type relationship roles. They may also take on some of the characteristics of a paid professional. The second cluster helps to describe the essence of the role. Here, we found that the dominant feature was that the role is social in nature. The third helps to explain aspects of the role from the point of view of volunteers themselves. It highlighted that the role is seen by volunteers as flexible, informal and sometimes peripheral. These characteristics some volunteers find stressful. Conclusions This paper demonstrates how qualitative research can be sythnesised systematically, extending methodological techniques to help answer difficult research questions. It provides information that may help managers and service planners to support volunteers appropriately. PMID:24506971

2014-01-01

340

Predictors of emergency room visits or acute hospital admissions prior to death among hospice palliative care clients in Ontario: a retrospective cohort study  

PubMed Central

Background Hospice palliative care (HPC) is a philosophy of care that aims to relieve suffering and improve the quality of life for clients with life-threatening illnesses or end of life issues. The goals of HPC are not only to ameliorate clients’ symptoms but also to reduce unneeded or unwanted medical interventions such as emergency room visits or hospitalizations (ERVH). Hospitals are considered a setting ill-prepared for end of life issues; therefore, use of such acute care services has to be considered an indicator of poor quality end of life care. This study examines predictors of ERVH prior to death among HPC home care clients. Methods A retrospective cohort study of a sample of 764 HPC home care clients who received services from a community care access centre (CCAC) in southern Ontario, Canada. All clients were assessed using the Resident Assessment Instrument for Palliative Care (interRAI PC) as part of normal clinical practice between April 2008 and July 2010. The Andersen-Newman framework for health service utilization was used as a conceptual model for the basis of this study. Logistic regression and Cox regression analyses were carried out to identify predictors of ERVH. Results Half of the HPC clients had at least one or more ERVH (n?=?399, 52.2%). Wish to die at home (OR?=?0.54) and advanced care directives (OR?=?0.39) were protective against ERVH. Unstable health (OR?=?0.70) was also associated with reduced probability, while infections such as prior urinary tract infections (OR?=?2.54) increased the likelihood of ERVH. Clients with increased use of formal services had reduced probability of ERVH (OR?=?0.55). Conclusions Findings of this study suggest that predisposing characteristics are nearly as important as need variables in determining ERVH among HPC clients, which challenges the assumption that need variables are the most important determinants of ERVH. Ongoing assessment of HPC clients is essential in reducing ERVH, as reassessments at specified intervals will allow care and service plans to be adjusted with clients’ changing health needs and end of life preferences. PMID:25053920

2014-01-01

341

Latent Classes of Prognosis Conversations in Palliative Care: A Mixed-Methods Study  

PubMed Central

Abstract Background Prognosis conversations are complex phenomena of substantial importance to palliative care (PC), yet these remain poorly understood. This study empirically identifies and describes major types of prognosis conversations that occur in the natural setting of PC consultation. Methods We audio-recorded and coded 71 inpatient “goals of care” PC consultations at a large academic medical center in the northeastern United States. We used quantitative Latent Class Analyses for identifying discrete prognosis conversation types and qualitative Dimensional Analyses for more fully describing the process and content of the latent classes. Results and Conclusions We observed three discrete types of prognosis conversations, each placing different communication demands upon all participants for achieving goal-concordant care: Navigating Options & Goals (56% of consultations), Facilitating New Goals (23%) and Preparing for End-of-Life (21%). This study provides the first step for developing educational and clinical prognosis communication interventions that are tailored to common decision-making contexts facing seriously ill patients, their families, and PC clinicians. PMID:23659459

Norton, Sally; Ladwig, Susan; Winters, Paul; Metzger, Maureen; Quill, Timothy; Alexander, Stewart

2013-01-01

342

Analysis of Sociodemographic Parameters of Patients Admitted in a Newly Established Palliative Care Center in a Regional Cancer Institute of North-West India  

PubMed Central

Background: After 4 months of the establishment of palliative care center (PCC) in our institute, we present an audit of the sociodemographic parameters of admitted patients. Such an audit can help to recognize the lacuna in the management and thus help to identify the specific requirements of cancer patients that might be overlooked in a busy cancer center. Materials and Methods: A total of 234 patients were admitted in our PCC since its inception in October 2013. The study design was retrospective, collecting the data from the medical records of the patients. The descriptive statistics of all these data were calculated in terms of frequencies and percentage of categorical variables. Results: Out of 234 patients admitted in PCC, 156 (66%) were male. The median age of the patients was 54 years. A total of 44% patients had primary malignancy of head and neck, 14% of cervical, 17% of lung cancer, 6% of breast, and 5% of colon, respectively. Metastatic disease was present in 76% of the patients admitted in the PCC. Liver was the most common (46%) metastatic site. Total 13 symptoms were identified with mean number of symptoms per patient at admission in PCC being 5.17. Conclusions: Palliative care services are an indispensable part of a tertiary regional cancer care center. The oncologists should be made aware of the requirement of better relief of pain and other distressing symptoms to provide better quality of life to the patients suffering from advanced cancer. PMID:25191011

Singhal, Mukesh Kumar; Kapoor, Akhil; Bagri, Puneet Kumar; Singh, Daleep; Nirban, Raj Kumar; Kumar, Narender; Kumar, Harvindra Singh

2014-01-01

343

The Utility of Reflective Writing after a Palliative Care Experience: Can We Assess Medical Students' Professionalism?  

PubMed Central

Abstract Background Medical education leaders have called for a curriculum that proactively teaches knowledge, skills, and attitudes required for professional practice and have identified professionalism as a competency domain for medical students. Exposure to palliative care (PC), an often deeply moving clinical experience, is an optimal trigger for rich student reflection, and students' reflective writings can be explored for professional attitudes. Objective Our aim was to evaluate the merit of using student reflective writing about a PC clinical experience to teach and assess professionalism. Methods After a PC patient visit, students wrote a brief reflective essay. We explored qualitatively if/how evidence of students' professionalism was reflected in their writing. Five essays were randomly chosen to develop a preliminary thematic structure, which then guided analysis of 30 additional, randomly chosen essays. Analysts coded transcripts independently, then collaboratively, developed thematic categories, and selected illustrative quotes for each theme and subtheme. Results Essays revealed content reflecting more rich information about students' progress toward achieving two professionalism competencies (demonstrating awareness of one's own perspectives and biases; demonstrating caring, compassion, empathy, and respect) than two others (displaying self-awareness of performance; recognizing and taking actions to correct deficiencies in one's own behavior, knowledge, and skill). Conclusions Professional attitudes were evident in all essays. The essays had limited use for formal summative assessment of professionalism competencies. However, given the increasing presence of PC clinical experiences at medical schools nationwide, we believe this assessment strategy for professionalism has merit and deserves further investigation. PMID:23937062

Gill, Anne C.; Teal, Cayla R.; Morrison, Laura J.

2013-01-01

344

A survey of patients who were referred to our palliative care division from other hospitals and appeared to have obvious indications for cancer chemotherapies.  

PubMed

Higashi Sapporo Hospital is a cancer-specific hospital with palliative care doctors and certified oncologists. During case conferences held twice a week, we routinely evaluate the referred patients. In our case conferences, we selected patients who were referred to our palliative care division from other hospitals, with possible indications for cancer chemotherapies. We reviewed a total of 1215 patients who were referred to our palliative care division. We identified 18 cases as having indications for cancer chemotherapies. Among them, we identified 4 cases as having indications for standard cancer chemotherapies. All 4 patients tolerated the therapies well, responded to chemotherapy, and survived for more than 1 year. Conferences in which oncologists and palliative care doctors can discuss cases frequently and intimately are thought to be important. PMID:24132795

Hirayama, Yasuo; Terui, Takeshi; Kusakabe, Toshiro; Koike, Kazuhiko; Ono, Kaoru; Kato, Junji; Ishitani, Kunihiko

2014-12-01

345

Students, Severe Illness, and Palliative Care: Results From a Pilot Study on a School-Based Intervention.  

PubMed

This study was aimed at piloting a school-based intervention on severe illness, within a project focused on spreading knowledge of palliative care among high school students (phases 0-2 Medical Research Council Framework). The intervention entailed the screening of a topic-related movie, 2 classroom meetings, and the development of a class-based multimedia production. Five classes from 5 high schools participated in this study, and a before-after evaluation was used to assess intervention feasibility and impact. Valid questionnaires were filled in by 84% (before) and 79% (after) of the 89 students. Concerning students' knowledge on palliative care, the after evaluation showed a significantly higher paired proportions of students reporting on "improving patient quality of life" and "life-threatening illness." Intervention components were deemed helpful by students, and positive feedback on the experience was given. PMID:24928837

Beccaro, M; Gollo, G; Ceccon, S; Giordano, M; Salvini, E; Vignali, S; Costantini, M; Leo, Silvia Di

2014-06-13

346

Cancer Pain: A Critical Review of Mechanism-based Classification and Physical Therapy Management in Palliative Care  

PubMed Central

Mechanism-based classification and physical therapy management of pain is essential to effectively manage painful symptoms in patients attending palliative care. The objective of this review is to provide a detailed review of mechanism-based classification and physical therapy management of patients with cancer pain. Cancer pain can be classified based upon pain symptoms, pain mechanisms and pain syndromes. Classification based upon mechanisms not only addresses the underlying pathophysiology but also provides us with an understanding behind patient's symptoms and treatment responses. Existing evidence suggests that the five mechanisms – central sensitization, peripheral sensitization, sympathetically maintained pain, nociceptive and cognitive-affective – operate in patients with cancer pain. Summary of studies showing evidence for physical therapy treatment methods for cancer pain follows with suggested therapeutic implications. Effective palliative physical therapy care using a mechanism-based classification model should be tailored to suit each patient's findings, using a biopsychosocial model of pain. PMID:21976851

Kumar, Senthil P

2011-01-01

347

Effectiveness of the palliative care ‘Availability, Current issues and Anticipation’ (ACA) communication training programme for general practitioners on patient outcomes: A controlled trial  

PubMed Central

Background: Although communicating effectively with patients receiving palliative care can be difficult, it may contribute to maintaining or enhancing patients’ quality of life. Little is known about the effect of training general practitioners in palliative care–specific communication. We hypothesized that palliative care patients of general practitioners exposed to the ‘Availability, Current issues and Anticipation’ communication training programme would report better outcomes than patients of control general practitioners. Aim: To evaluate the effectiveness of the Availability, Current issues and Anticipation training programme for general practitioners on patient-reported outcomes. Design: In a controlled trial, general practitioners followed the Availability, Current issues and Anticipation programme or were part of the control group. Patients receiving palliative care of participating general practitioners completed the Palliative Care Outcome Scale, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative, the Rest & Peace Scale, the Patient Satisfaction Questionnaire–III and the Availability, Current issues and Anticipation Scale, at baseline and 12 months follow-up. We analysed differences between groups using linear mixed models. Trial registration: ISRCTN56722368. Setting/participants: General practitioners who attended a 2-year Palliative Care Training Course in the Netherlands. Results: Questionnaire data were available for 145 patients (89 in intervention and 56 in control group). We found no significant differences over time between the intervention and control groups in any of the five outcome measures. Ceiling effects were observed for the Rest & Peace Scale, Patient Satisfaction Questionnaire–III and Availability, Current issues and Anticipation Scale. Conclusion: General practitioner participation in the Availability, Current issues and Anticipation training programme did not have a measurable effect on any of the outcomes investigated. Patients reported high levels of satisfaction with general practitioner care, regardless of group assignment. Future research might focus on general practitioners without special interest in palliative care. PMID:24951633

Blankenstein, Annette H; Schweitzer, Bart PM; Knol, Dirk L; van der Horst, Henriëtte E; Aaronson, Neil K; Deliens, Luc

2014-01-01

348

Indian Health Service: Find Health Care  

MedlinePLUS

... Home Find Health Care Share This Page: Find Health Care IMPORTANT If you are having a health emergency ... services, continuous nursing services and that provides comprehensive health care including diagnosis and treatment. Health Locations An ambulatory ...

349

Expanding the reach of a cancer palliative care curriculum through Web-based dissemination: a public-private collaboration.  

PubMed

Deficiencies in palliative and end-of-life care have been well documented by the Institute of Medicine. The National Cancer Institute (NCI), in partnership with Northwestern University, developed an educational curriculum for clinicians who deal with end-of-life issues, the Education in Palliative and End-of-Life Care for Oncology. A live meeting was held to distribute the curriculum to institutional leaders who could take it back to their organizations for broader distribution. To further distribute the materials and ensure they were available whenever a clinician wanted to view them, NCI collaborated with a leading online medical education provider whose websites are visited by over 1,500,000 physicians per month ( http://cme.medscape.com ) to post one module of the curriculum as an online activity certified for physician and nurse continuing education credit. The module is entitled "Last Hours of Living: Practical Advice for Clinicians." A descriptive analysis of the first 7 months of publication was performed. Twenty thousand sixty-one health professionals completed the activity during this time period and earned continuing education credit. Eighty-four percent completed the post-activity evaluation survey. Satisfaction was very high among participants, and many indicated their intention to incorporate new knowledge into practice. Collaboration with a commonly used online medical education provider such as Medscape is effective at broadly disseminating palliative care education to health professionals. PMID:20237885

Arenella, Cheryl; Yox, Susan; Eckstein, Daniel S; Ousley, Anita

2010-09-01

350

[Potential of Information and Communications Technology to Improve Intersectoral Processes of Care: A Case Study of the Specialised Outpatient Palliative Care.  

PubMed

Objective: The added value of information and communications technologies should be demonstrated precisely in such areas of care in which the importance of intersectoral and interdisciplinary cooperation is particularly high. In the context of the accompanying research of a supply concept for palliative care patients, the potential of a digital documentation process was comparatively analysed with the conventional paper-based workflow. Methods: Data were collected in the form of a multi-methodological approach and processed for the project in 3 stages: (1) Development and analysis of a palliative care process with the focus on all relevant steps of documentation. (2) Questionnaire design and the comparative mapping of specific process times. (3) Sampling, selection, and analysis of patient records and their derivable insights of process iterations. Results: With the use of ICT, the treatment time per patient is reduced by up to 53% and achieves a reduction in costs and workload by up to 901?min. The result of an up to 213% increase in the number of patient contacts allows a higher continuity of care. Although the 16% increase in documentation loyalty improves the usability of cross-team documented information, it partially extends the workload on the level of individual actors. By using a digital health record around 31% more patients could be treated with the same staffing ratio. Conclusions: The multi-stage analysis of the palliative care process showed that ICT has a decisive influence on the process dimension of intersectoral cooperation. Due to favourable organisational conditions the pioneering work of palliative care also provides important guidance for a successful use of ICT technologies in the context of innovative forms of care. PMID:25148421

Meyer-Delpho, C; Schubert, H-J

2014-08-22

351

Herbal Medicine and Acupuncture for Breast Cancer Palliative Care and Adjuvant Therapy  

PubMed Central

Breast cancer is a life-threatening disease among women worldwide with annual rates of reported incidence and death increasing alarmingly. Chemotherapy is a recommended and effective treatment option for breast cancer; however, the narrow therapeutic indices and varied side effects of currently approved drugs present major hurdles in increasing its effectiveness. An increasing number of literature evidence indicate that complementary and alternative medicine (CAM) used in treatment-related symptom control and alleviation of side effects plays an important role in increasing survival rate and quality of life in breast cancer patients. This review focuses on the use of herbal medicines and acupuncture in palliative care and as adjuvants in the treatment of breast cancer. Herbal medicinal treatments, the correlation of clinical use with demonstrated in vitro and in vivo mechanisms of action, and the use of certain acupoints in acupuncture are summarized. The aim of this review is to facilitate an understanding of the current practice and usefulness of herbal medicine and acupuncture as adjuvants in breast cancer therapy. PMID:23840256

Liao, Guo-Shiou; Shyur, Lie-Fen

2013-01-01

352

Integrating POLST into palliative care guidelines: a paradigm shift in advance care planning in oncology.  

PubMed

Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is an essential process that should begin at the time of diagnosis, if not already initiated, to ensure that all patient and family rights are preserved. Communicating effectively with the patient and family and having the patient designate a surrogate decision-maker are critical. Attention must be paid to resolving conflicts among patient values and preferences and those of family and the health care team. Patient-centered goals for care and expectations should be elicited at first assessment and reassessed frequently as conditions change. As a disease progresses, advance directives are rarely precise enough to predict all possible scenarios and outline guidance for care. Therefore, for patients with advanced metastatic cancer and a potential life expectancy of less than 1 year, converting patient-centered treatment goals into actionable medical orders while the patient maintains capacity is a more effective way to ensure that patient preferences are honored. Physician Orders for Life-Sustaining Treatment (POLST) and similar medical order forms provide explicit direction about resuscitation status ("code status") if the patient is pulseless and apneic. POLST also includes directions about additional interventions the patient may or may not want. A decade of research in Oregon has proved that the POLST Paradigm Program more accurately conveys end-of-life preferences that are more likely to be followed by medical professionals than traditional advance directives alone. PMID:16948957

Bomba, Patricia A; Vermilyea, Daniel

2006-09-01

353

Barriers to effective palliative care for low-income patients in late stages of cancer: report of a study and strategies for defining and conquering the barriers.  

PubMed

The discipline of palliative care is growing rapidly in the United States but, as in many other areas of medical care, multiple barriers exist to providing such care to low-income patients with end-stage cancer and other diseases. Reports vary with regard to definition and scope of these and other barriers. This article briefly reports a pilot study of perceived barriers to palliative care and related issues in an urban cancer clinic, reviews the current literature, and suggest ways to identify and overcome such barriers in low-income patients with cancer. PMID:20804885

Lyckholm, Laurie J; Coyne, Patrick J; Kreutzer, Kathleen O; Ramakrishnan, Viswanathan; Smith, Thomas J

2010-09-01

354

Choosing a Doctor or Health Care Service  

MedlinePLUS

... health care provider or service is accredited The location of a service Hours that the service is available Whether you like a health care provider's personality On this page you'll find information to help you choose a health care provider or service.

355

Cultural understanding in the provision of supportive and palliative care: perspectives in relation to an indigenous population  

PubMed Central

Objectives The provision of supportive and palliative care for an indigenous people in Nova Scotia, Canada, was examined to further our understanding and thereby improve cultural competency. Most of Nova Scotia's indigenous people are Mi'kmaq. The Mi'kmaq Nation lives in Atlantic Canada as well as New England in the eastern USA. Methods Themes were identified in the literature and through discussion with seven experts who have Mi'kmaq health and cultural research expertise. This paper has been reviewed and approved by two Mi'kmaq consultants who frequently speak on behalf of the Mi'kmaq people in relation to health and cultural understanding. Recommendations for non-indigenous care providers are presented. Results The themes identified focused on jurisdictional issues and cultural understanding. They are interconnected and grounded in the historic Mi'kmaq context of colonialism. Jurisdictional issues experienced by the Mi'kmaq affect access, continuity and appropriateness of care. Cultural concepts were associated with worldview, spirituality, the role of family and community relationships and communication norms, and thereby with the alignment of values and language in the provision of care. Three Mi'kmaq concepts are noted: apiksiktatulti, nemu'ltus and salite. Conclusion Through reflection on the situation of Nova Scotia's Mi'kmaq, non-indigenous healthcare providers can assess how they might increase their cultural understanding in the provision of supportive and palliative care. Recommendations relate to the health system, relationships with individual persons and direction for research. PMID:23585926

Johnston, Grace; Vukic, Adele; Parker, Skylan

2013-01-01

356

How Parents of Children Receiving Pediatric Palliative Care Use Religion, Spirituality, or Life Philosophy in Tough Times  

PubMed Central

Abstract Background How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described. Methods Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times. Responses were coded and thematically organized utilizing qualitative data analysis methods. Any discrepancies amongst coders regarding codes or themes were resolved through discussion that reached consensus. Results Most parents of children receiving palliative care felt that RSLP was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents, however, did not wish to discuss the topic at all. For those who described their RSLP, their beliefs and practices were associated with qualities of their overall outlook on life, questions of goodness and human capacity, or that “everything happens for a reason.” RSLP was also important in defining the child's value and beliefs about the child's afterlife. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices influenced their perspectives on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt they received support from both their spiritual communities and from God, peace and comfort, and moral guidance. Some parents, however, also reported questioning their faith, feelings of anger and blame towards God, and rejecting religious beliefs or communities. Conclusions RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care. PMID:21244252

Hexem, Kari R.; Mollen, Cynthia J.; Carroll, Karen; Lanctot, Dexter A.

2011-01-01

357

The Dangers of Involving Children as Family Caregivers of Palliative Home-Based-Care to Advanced HIV/AIDS Patients  

PubMed Central

The aim of this research paper is to explore the dangers of involving children as family caregivers of palliative care and home-based-care to advanced HIV/AIDS patients, while its objective is to discuss the dangers or perfidiousness that minors especially the girl children face as they handle care giving of advanced HIV/AIDS patients. The article has relied on eclectic data sources. The research has foundminors disadvantaged by the following: being engulfed by fear and denied rights through care giving; being emotionally and physiologically overwhelmed; being oppressed and suppressed by caring duties; being at risk of contracting HIV/AIDS; and having their education compromised by care giving. The paper recommends: (1) strengthening and emphasizing on children’s rights; (2) maintaining gender balance in care giving; (3) implementation and domestication of the United Nations conventions on the rights of children; (4) community awareness on equal gender co participation in care giving; (5) and fostering realization that relying on child care giving is a negative score in fulfilling global Millennium Development Goals. PMID:21218000

Kangethe, Simon

2010-01-01

358

Massage therapy for cancer palliation and supportive care: a systematic review of randomised clinical trials  

Microsoft Academic Search

Introduction  Massage is a popular adjunct to cancer palliation. This systematic review is aimed at critically evaluating all available\\u000a randomised clinical trials of massage in cancer palliation.\\u000a \\u000a \\u000a \\u000a Materials and methods  Six databases were searched to identify all trials of classical massage for cancer patients. Studies of other types of massage,\\u000a e.g. reflexology, aromatherapy, were excluded. Fourteen trials met all inclusion criteria.\\u000a \\u000a \\u000a \\u000a Discussion  Collectively,

E. Ernst

2009-01-01

359

Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise  

PubMed Central

Abstract Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications. PMID:24195755

Preston, Nancy; Evans, Catherine J.; Grande, Gunn; Short, Vicky; Benalia, Hamid; Higginson, Irene J.; Todd, on behalf of MORECare, Chris

2013-01-01

360

Use of oxygen and opioids in the palliation of dyspnoea in hypoxic and non-hypoxic palliative care patients: a prospective study  

Microsoft Academic Search

Background  Dyspnoea is a complex experience of the body and the mind. Whereas the effects of opioids on dyspnoea in advanced disease\\u000a have been the focus of studies for management of dyspnoea in palliative medicine, the role of oxygen is still unclear. The\\u000a effects of symptomatic oxygen and opioid treatment on ventilation and palliation of dyspnoea in hypoxic (H) and non-hypoxic

Katri Elina Clemens; Ines Quednau; Eberhard Klaschik

2009-01-01

361

Implementation of palliative care as a mandatory cross-disciplinary subject (QB13) at the Medical Faculty of the Heinrich-Heine-University Düsseldorf, Germany  

PubMed Central

Background: By means of the revision of the Medical Licensure Act for Physicians (ÄAppO) in 2009, undergraduate palliative care education (UPCE) was incorporated as a mandatory cross sectional examination subject (QB13) in medical education in Germany. Its implementation still constitutes a major challenge for German medical faculties. There is a discrepancy between limited university resources and limited patient availabilities and high numbers of medical students. Apart from teaching theoretical knowledge and skills, palliative care education is faced with the particular challenge of imparting a professional and adequate attitude towards incurably ill and dying patients and their relatives. Project description: Against this background, an evidence-based longitudinal UPCE curriculum was systematically developed following Kern’s Cycle [1] and partly implemented and evaluated by the students participating in the pilot project. Innovative teaching methods (virtual standardised/simulated patient contacts, e-learning courses, interdisciplinary and interprofessional collaborative teaching, and group sessions for reflective self-development) aim at teaching palliative care-related core competencies within the clinical context and on an interdisciplinary and interprofessional basis. Results: After almost five years of development and evaluation, the UPCE curriculum comprises 60 teaching units and is being fully implemented and taught for the first time in the winter semester 2014/15. The previous pilot phases were successfully concluded. To date, the pilot phases (n=26), the subproject “E-learning in palliative care” (n=518) and the blended-learning elective course “Communication with dying patients” (n=12) have been successfully evaluated. Conclusion: All conducted development steps and all developed programmes are available for other palliative care educators (Open Access). The integrated teaching formats and methods (video, e-learning module, interprofessional education, group sessions for reflexive self-development) and their evaluations are intended to make a contribution to an evidence-based development of palliative care curricula in Germany.

Schulz, Christian; Wenzel-Meyburg, Ursula; Karger, André; Scherg, Alexandra; in der Schmitten, Jürgen; Trapp, Thorsten; Paling, Andreas; Bakus, Simone; Schatte, Gesa; Rudolf, Eva; Decking, Ulrich; Ritz-Timme, Stephanie; Grünewald, Matthias; Schmitz, Andrea

2015-01-01

362

Engineering natural language processing solutions for structured information from clinical text: extracting sentinel events from palliative care consult letters.  

PubMed

Despite a trend to formalize and codify medical information, natural language communications still play a prominent role in health care workflows, in particular when it comes to hand-overs between providers. Natural language processing (NLP) attempts to bridge the gap between informal, natural language information and coded, machine-interpretable data. This paper reports on a study that applies an advanced NLP method for the extraction of sentinel events in palliative care consult letters. Sentinel events are of interest to predict survival and trajectory for patients with acute palliative conditions. Our NLP method combines several novel characteristics, e.g., the consideration of topological knowledge structures sourced from an ontological terminology system (SNOMED CT). The method has been applied to the extraction of different types of sentinel events, including simple facts, temporal conditions, quantities, and degrees. A random selection of 215 anonymized consult letters was used for the study. The results of the NLP extraction were evaluated by comparison with coded sentinel event data captured independently by clinicians. The average accuracy of the automated extraction was 73.6%. PMID:23920625

Barrett, Neil; Weber-Jahnke, Jens H; Thai, Vincent

2013-01-01

363

Cancer-related pain in older adults receiving palliative care: Patient and family caregiver perspectives on the experience of pain  

PubMed Central

BACKGROUND: Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients’ cancer-related pain, despite its significance for pain management in the home setting. OBJECTIVES: To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers. METHODS: A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (?65 years of age) with advanced cancer receiving palliative care at home and their family caregivers. RESULTS: The main category ‘Experiencing cancer pain’ incorporated three themes. The theme ‘Feeling cancer pain’ included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, ‘Reacting to cancer pain’, included patients’ and family caregivers’ behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, ‘Living with cancer pain’ incorporated individual and social-relational changes that resulted from living with cancer pain. CONCLUSIONS: The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged. PMID:23957019

McPherson, Christine J; Hadjistavropoulos, Thomas; Lobchuk, Michelle M; Kilgour, Kelly N

2013-01-01

364

Effectiveness of the ACA (Availability, Current issues and Anticipation) training programme on GP-patient communication in palliative care; a controlled trial  

PubMed Central

Background Communicating effectively with palliative care patients has been acknowledged to be somewhat difficult, but little is known about the effect that training general practitioners (GPs) in specific elements of communication in palliative care might have. We hypothesized that GPs exposed to a new training programme in GP-patient communication in palliative care focusing on availability of the GP for the patient, current issues the GP should discuss with the patient and anticipation by the GP of various scenarios (ACA), would discuss more issues and become more skilled in their communication with palliative care patients. Methods In this controlled trial among GPs who attended a two-year Palliative Care Peer Group Training Course in the Netherlands only intervention GPs received the ACA training programme. To evaluate the effect of the programme a content analysis (Roter Interaction Analysis System) was performed of one videotaped 15-minute consultation of each GP with a simulated palliative care patient conducted at baseline, and one at 12 months follow-up. Both how the GP communicated with the patient (‘availability’) and the number of current and anticipated issues the GP discussed with the patient were measured quantitatively. We used linear mixed models and logistic regression models to evaluate between-group differences over time. Results Sixty-two GPs were assigned to the intervention and 64 to the control group. We found no effect of the ACA training programme on how the GPs communicated with the patient or on the number of issues discussed by GPs with the patient. The total number of issues discussed by the GPs was eight out of 13 before and after the training in both groups. Conclusion The ACA training programme did not influence how the GPs communicated with the simulated palliative care patient or the number of issues discussed by the GPs in this trial. Further research should evaluate whether this training programme is effective for GPs who do not have a special interest in palliative care and whether studies using outcomes at patient level can provide more insight into the effectiveness of the ACA training programme. Trial registration Current Controlled Trials ISRCTN56722368 PMID:23819723

2013-01-01

365

Integrating Traditional Services within Primary Health Care  

Microsoft Academic Search

This article critically reviews the current status of primary health care services in India. It was observed that medical services have primarily relied on Western medicine, and are incompatible with prevailing health beliefs and practices. The failure of Western medicine and, as a consequence, that of primary health care, calls for developing some culturally compatible health care models for India.

Ajit K. Dalal

2005-01-01

366

Treating an Established Episode of Delirium in Palliative Care: Expert Opinion and Review of the Current Evidence Base With Recommendations for Future Development  

PubMed Central

Context Delirium is a highly prevalent complication in patients in palliative care settings, especially in the end-of-life context. Objectives To review the current evidence base for treating episodes of delirium in palliative care settings and propose a framework for future development. Methods We combined multidisciplinary input from delirium researchers and other purposely selected stakeholders at an international delirium study planning meeting. This was supplemented by a literature search of multiple databases and relevant reference lists to identify studies regarding therapeutic interventions for delirium. Results The context of delirium management in palliative care is highly variable. The standard management of a delirium episode includes the investigation of precipitating and aggravating factors followed by symptomatic treatment with drug therapy. However, the intensity of this management depends on illness trajectory and goals of care in addition to the local availability of both investigative modalities and therapeutic interventions. Pharmacologically, haloperidol remains the practice standard by consensus for symptomatic control. Dosing schedules are derived from expert opinion and various clinical practice guidelines as evidence-based data from palliative care settings are limited. The commonly used pharmacologic interventions for delirium in this population warrant evaluation in clinical trials to examine dosing and titration regimens, different routes of administration, and safety and efficacy compared with placebo. Conclusion Delirium treatment is multidimensional and includes the identification of precipitating and aggravating factors. For symptomatic management, haloperidol remains the practice standard. Further high-quality collaborative research investigating the appropriate treatment of this complex syndrome is needed. PMID:24480529

Pereira, José L.; Davis, Daniel H.J.; Currow, David C.; Meagher, David; Rabheru, Kiran; Wright, David; Bruera, Eduardo; Hartwick, Michael; Gagnon, Pierre R.; Gagnon, Bruno; Breitbart, William; Regnier, Laura; Lawlor, Peter G.

2014-01-01

367

Evaluating an evidence-based curriculum in undergraduate palliative care education: piloting a phase II exploratory trial for a complex intervention  

PubMed Central

Background By 2013 Palliative Care will become a mandatory examination subject in the medical curriculum in Germany. There is a pressing need for effective and well-designed curricula and assessment methods. Debates are on going as how Undergraduate Palliative Care Education (UPCE) should be taught and how knowledge and skills should be assessed. It is evident by this time that the development process of early curricula in the US and UK has led to a plethora of diverse curricula which seem to be partly ineffective in improving the care for the seriously ill and dying offered by newly qualified doctors, as is demonstrated in controlled evaluations. The goals of this study were to demonstrate an evidence-based approach towards developing UPCE curricula and investigate the change in medical students’ self-perceived readiness to deal with palliative care patients and their families. Methods To evaluate the effects of the UPCE curriculum we chose a prospective, controlled, quasi-experimental, pre, retrospective-pre, post study design. A total of n?=?37 3rd and 4th –year medical students were assigned to the intervention group (n?=?15; 4th -year) and to the control group (n?=?22; 3rd-year). Resting on the self-efficacy concept of Bandura the measurement was conducted by a refined test-battery based on two independent measurements (the revised Collet-Lester-Fear-of-Death-Scale and the instrument of the “Program in Palliative Care Education and Practice” at Harvard Medical School) including 68 items altogether in a five-point Likert-scale. These items were designed to test elementary skills in caring for the dying and their relatives as perceived by medical undergraduates. Datasets from both groups were analysed by paired and independent two-sample t-test. The TREND statement for reporting non-randomized evaluations was applied for reporting on this quasi-experimental study. Results Three constructs showed statistically significant differences comparing the intervention group before and after. Willingness to accompany a dying patient increased from 21.40 to 37.30 (p?Palliative Care increased from 8.30 to 13.20 (p?=?.001). Conclusions This study is a small but systematic step towards rigorous curricular development in palliative care. Our manualised curriculum is available for scrutiny and scientific feedback to support an open and constructive process of best-practice comparison in palliative care. PMID:23286697

2013-01-01

368

The Meaning of the Music: The Role of Music in Palliative Care Music Therapy as Perceived by Bereaved Caregivers of Advanced Cancer Patients  

Microsoft Academic Search

In an earlier qualitative research study exploring the meaning of preloss music therapy to bereaved caregivers who participated in sessions through a home-based hospice program, various narrative accounts revealed the significance of music in music therapy sessions. In this study, the role of music in palliative care music therapy is examined and representatively summarized, followed by a review of strategies

Lucanne Magill

2009-01-01

369

The challenges of renal replacement therapy and renal palliative care in the elderly.  

PubMed

The main aim of this review is to let general practitioners and physicians understand what happens to older patients after referral to the renal service. Usually, most patients will be managed completely by the renal team, either because the patient requires dialysis or because conservative but specialised care is appropriate. The recent increase in dialysis rate can mostly be accounted for by older patients for whom such demanding treatment was previously thought to be contraindicated. The decision to dialyse the elderly still remains difficult, with recent data suggesting that if there are significant comorbidities the survival advantage of dialysis in patients over 75 years of age is unlikely to be more than four months. Towards the end of life, conservative treatment is not simply a decision not to dialyse, but comprises active disease management, including treatment of anaemia and other supportive care, which may become increasingly complex, e.g. pain relief with fentanyl and alfentanyl. Older patients who decide to accept dialysis treatment contend with all the usual end of life issues of older people. They have an additional option, denied to the rest of us, of dialysis withdrawal; this effectively allows them to die at a time of their choosing. PMID:21949923

Isles, C; Robertson, S; Almond, A; Donaldson, K; Clark, D

2011-09-01

370

[Translation and cross-cultural adaptation of the Edmonton Symptom Assessment System for use in Palliative Care].  

PubMed

The objective of the study was translation and cross-cultural adaptation into Brazilian Portuguese of the instrument Edmonton Symptom Assessment System (ESAS-r). The ESAS-r is a revised version of the instrument ESAS that assesses nine symptoms in Palliative Care. This is a methodological study based on a benchmark composed of six steps: translation, synthesis, backtranslation, expert committee, pre-test and submission of translated version for consideration of the authors. As a result changes were made to the title, statements and certain terms to ensure adequacy of grammar and vocabulary. In the pre-test the term 'nausea' raised doubts, and an additional explanation on this word was suggested. Standardization of instrument columns and the replacement of the term 'depression' for 'sadness' was also recommended. In this study, the ESAS-r instrument was translated and adapted to Brazilian Portuguese, and the next step will be testing the psychometric properties. PMID:24015476

Monteiro, Daiane da Rosa; Almeida, Miriam de Abreu; Kruse, Maria Henriqueta Luce

2013-06-01

371

Services in an Era of Managed Care  

Microsoft Academic Search

\\u000a The purpose of this chapter is to provide an overview of the organization, financing, and delivery of women’s mental health\\u000a services in the current managed care environment. This background on the essentials of managed care is critical to a full\\u000a understanding of women’s mental health services.

Elizabeth Levy Merrick; Sharon Reif

372

Physician attitudes toward palliative care for patients with pulmonary arterial hypertension: results of a cross-sectional survey  

PubMed Central

Abstract Pulmonary arterial hypertension (PAH) is a chronic, symptomatic, life-threatening illness; however, it is complex, with variable expression regarding impact on quality of life (QOL). This study investigated attitudes and comfort of physicians regarding palliative care (PC) for patients with PAH and explored potential barriers to PC in PAH. An internet-based, mixed-methods survey was distributed to Pulmonary Hypertension Clinicians and Researchers, a professional organization within the Pulmonary Hypertension Association. Only responses from physicians involved in clinical care of patients with PAH were analyzed. Of 355 clinicians/researchers, 79 (22%) returned surveys, including 76 (21%) providers involved in clinical care. Responding physicians were mainly pulmonologists (67%), practiced in university/academic medical centers (89%), had been in practice a mean of 12 ± 7 years, cared for a median of 100 PAH patients per year, and reported a high level of confidence in managing PAH (87%), advanced PAH-specific pharmacologic interventions (95%), and end-of-life care (88%). Smaller proportions were comfortable managing pain (62%) and QOL issues (78%). Most physicians (91%) reported utilizing PC consultation at least once in the prior year, primarily in the setting of end-of-life/active dying (59%), hospice referral (46%), or symptomatic dyspnea/impaired QOL (40%). The most frequent reasons for not referring patients to PC included nonapproval by the patient/family (51%) and concern that PC is “giving up hope” (43%). PAH may result in symptoms that impair QOL despite optimal PAH therapy; however, PC awareness and utilization for PAH providers is low. Opportunities may exist to integrate PC into care for PAH patients.

Fenstad, Eric R.; Shanafelt, Tait D.; Sloan, Jeff A.; Novotny, Paul J.; Durst, Louise A.; Frantz, Robert P.; McGoon, Michael D.

2014-01-01

373

Family Day Care Provider Support Services Directory.  

ERIC Educational Resources Information Center

This directory profiles numerous organizational support services for family day care providers in the Kansas City metropolitan area. The first chapter, on operating a family day care home, concerns licensing and registration, the processes of starting and marketing a day care business, zoning and municipal regulation, and substitute providers. The…

Galblum, Trudi W.; Boyer-Shesol, Cathy

374

Assessing the symptoms, anxiety and practical needs of HIV\\/AIDS patients receiving palliative care  

Microsoft Academic Search

We report the work of two community teams who care for people with AIDS\\/HIV related illness, the characteristics of patients referred, and the impact of the teams on four aspects of quality of life. Data was collected on 140 patients (85 St. Mary's Home Support Team, 55 Bloomsbury Community Care Team) who were referred to and remained in the care

E. Butters; I. Higginson; R. George; A. Smits; M. McCarthy

1992-01-01

375

Death is not always a failure: outcomes from implementing an online virtual patient clinical case in palliative care for family medicine clerkship  

PubMed Central

Background The dying patient is a reality of medicine. Medical students, however, feel unprepared to effectively manage the complex end-of-life (EOL) management issues of the dying patient and want increased experiential learning in Palliative Care. Aims To address the need for more formal curriculum in EOL care, we developed and implemented an online virtual patient (VP) clinical case in Palliative Care into the 2010–2011 Year Three Family Medicine Clerkship rotation curriculum. Methods A mixed-method design was used to measure the change in knowledge and perceived preparedness level in EOL care before and after completing the online VP case. A survey collected qualitative descriptions of the students’ educational experience of using this case. Results Ninety five percent (130/137) of the students voluntarily consented to have their results analyzed. The group knowledge score (n=127) increased significantly from a pre-course average of 7.69/16±2.27, to a post-course average of 10.02/16±2.39 (p<0.001). The students’ self-assessed comfort level increased significantly with all aspects of EOL management from pre-course to post-course (p<0.001). Nearly, 91.1% of the students rated the VP realism as ‘Good to Excellent’, 86% rated the case as educationally beneficial. Nearly 59.3% of students felt emotionally engaged with the VP. Qualitative feedback found that the case content was very useful and realistic, but that the interface was sometimes awkward to navigate. Conclusions The online VP case in Palliative Care is a useful teaching tool that may help to address the need for increased formal Palliative Care experience in medical school training programs. PMID:24267774

Tan, Amy; Ross, Shelley Paige; Duerksen, Kimberley

2013-01-01

376

Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study  

PubMed Central

Background Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. Methods A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. Results 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. Conclusions Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research. PMID:21477274

2011-01-01

377

The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals  

PubMed Central

Background: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients. Aim: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence. Design: Standard systematic review and narrative synthesis. Data sources: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies. Results: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care. Conclusions: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed. PMID:24821710

Murtagh, Fliss EM

2014-01-01

378

Is there a role for acupuncture in the symptom management of patients receiving palliative care for cancer? A pilot study of 20 patients comparing acupuncture with nurse-led supportive care  

Microsoft Academic Search

PurposeA pilot study to document changes in symptoms after acupuncture or nurse-led supportive care in patients with incurable cancer.MethodsPatients receiving palliative care with estimated survival of at least 3 months were screened with the Edmonton Symptom Assessment System (ESAS). Patients (n=20) with significant symptoms were randomised to receive weekly acupuncture or nurse-led supportive care for 4 weeks. ESAS scores were

Jan T W Lim; Erin T Wong; Steven K H Aung

2011-01-01

379

76 FR 37201 - Reimbursement Offsets for Medical Care or Services  

Federal Register 2010, 2011, 2012, 2013

...Part 17 Reimbursement Offsets for Medical Care or Services; Final Rule Federal Register...2900-AN55 Reimbursement Offsets for Medical Care or Services AGENCY: Department of Veterans...concerning the reimbursement of medical care and services delivered to veterans...

2011-06-24

380

End-of-life and palliative care issues in medical and nursing schools in the United States.  

PubMed

Medical and nursing schools in the United States have traditionally had a limited emphasis on end-of-life care. The present study is a comparison of these 2 professional programs' current offerings on death education. Data were gathered via a mailed survey from the 122 medical schools in 2005 and the 580 baccalaureate nursing programs in 2006. Return rates of 81% and 71%, respectively, were received. All medical schools and 99% of nursing schools reported offering something on death and dying, with over 90 % of students in these programs participating. The average number of hours offered in both professional programs is less than 15. Over 87% in both programs have offerings in palliative care. Whereas nursing programs rely almost solely on nurses for end-of-life course provisions, medical schools are more interdisciplinary by faculty. End-of-life issues are presented in both medical and nursing curricula, though on a limited basis. This emphasis exposes students to the issues, though not in an in-depth way. PMID:17853525

Dickinson, George E

2007-09-01

381

New Faculty WorkshopNew Faculty Workshop Animal Care Services / Research Compliance Services / Sponsored Programs Services  

E-print Network

New Faculty WorkshopNew Faculty Workshop Animal Care Services / Research Compliance ServicesOffice of the Vice President for Research #12;Animal Care ServicesAnimal Care Services · PHONE: 8604862907 · FAX and scholarship to ensure that it meets all regulatory standards involving research with human subjects, animals

Alpay, S. Pamir

382

Palliative Care Partnership: a successful model of primary\\/secondary integration  

Microsoft Academic Search

The health reforms of the 1990s and early 21st century have seen unheralded change in the delivery of health services in New Zealand, and the concept of integration of primary and specialist or secondary services into a seamless health delivery service is one of the key planks of national and regional healthcare planning in New Zealand. 1,2 This paper reports

Bruce Stewart; Simon Allan; Barry Keane; Bridget Marshall; Jane Ayling; Tai Luxford

2006-01-01

383

Bereavement services in acute care settings.  

PubMed

Families of acute care patients who die while receiving care face loss and grief in unfamiliar institutional environments. Informal bereavement assistance may occur in acute care settings, but formally organized service and planned follow-up work with bereaved family members is less common. A literature review revealed little discussion of acute care-related bereavement services. The detrimental effects of long-term, unresolved grief, however, are well documented. Bereavement services help to reduce immediate physical and emotional distress while ameliorating long-term morbidity associated with unresolved grief. They may also reduce eventual costs for services and discomfort of illness by reducing the likelihood of stress-related illnesses o