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1

How and why do GPs use specialist palliative care services?  

PubMed

This study presents findings on the interaction of generalists and specialists within palliative care. General practitioners (GPs) are central to community palliative care as most of the last year of a patient's life is spent at home under the care of the primary health care team. GPs see few palliative care patients each year, however, and access to specialist palliative care services for support, advice and referral can be important particularly to support patients who wish to die at home. The aim of this study was to explore GP use of and attitudes towards specialist palliative care services through semi-structured interviews in inner city, urban and rural areas. It was part of a longitudinal evaluation of an educational intervention, and the quantitative components are reported elsewhere. Sixty-three GPs were interviewed, having been sampled randomly from inner city, urban and rural health authority district lists. While most interviewees reported using specialist palliative care services as a resource, other models of use included working together as an extended team, seldom using such services and handing over care or responsibility entirely. Availability of services clearly shaped use, but previous experience and expectations of easy access were also important. Patterns of use were not necessarily fixed, but dependent also on the differing needs of and wishes of patients and carers. Specialist palliative care services need to be aware of such variations in ways of working and to consider the implications for the capacity and flexibility of both primary care and specialist service provision. PMID:12047001

Shipman, Catherine; Addington-Hall, Julia; Barclay, Stephen; Briggs, Jill; Cox, Ivan; Daniels, Lilian; Millar, David

2002-05-01

2

Palliative care services for patients with heart failure  

Microsoft Academic Search

As the broader needs of patients with heart failure become more widely recog- nised (see Chapter 1), so further challenges arise - how best to provide the supportive and palliative care that is so clearly needed, and how should the specialist palliative care (SPC) services be involved? This chapter will discuss some of the barriers to SPC involvement, and offers

Miriam Johnson

3

[eLearning service for home palliative care].  

PubMed

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

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

2008-12-01

4

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

5

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 ...

6

Palliative Care  

MedlinePLUS

... patient will cope adequately with the rigors of therapy and maintain a satisfying level of physical and psychosocial functioning. For the dying patient, optimal palliative care addresses the traditional concerns of the hospice movement. Comfort for the ...

7

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

8

Developing Successful Models of Cancer Palliative Care Services  

PubMed Central

Objectives This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described. Data Sources Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed. Conclusion Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models. Implications for nursing practice Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer. PMID:20971407

Bakitas, Marie; Bishop, Margaret Firer; Caron, Paula; Stephens, Lisa

2010-01-01

9

4 Palliative and Terminal Care  

Microsoft Academic Search

1 Summary This chapter provides assistance for those purchasing palliative care services. The analysis is based on current research evidence and national and local population and health services utilization data. ? Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual

I Higginson

1997-01-01

10

Perceptions and Utilization of Palliative Care Services in Acute Care Hospitals  

PubMed Central

Objective To understand perceptions of palliative care in acute care hospitals and identify barriers to earlier use of palliative care in the illness trajectory. Methods We conducted semistructured interviews with 120 providers involved in decision making or discharge planning and “shadowed” health care providers on intensive care unit rounds in 11 Pennsylvania hospitals, and then used qualitative methods to analyze field notes and transcripts. Results Most participants characterized palliative care as end-of-life or hospice care that is initiated after the decision to limit treatment is made. Few recognized the role of palliative care in managing symptoms and addressing the psychosocial needs of patients with chronic illnesses other than cancer. Participants viewed earlier and broader palliative care consultations less in terms of clinical benefits than in terms of cost savings accrued from shorter terminal hospitalizations. In general, participants thought nurses were most likely to facilitate palliative care consults, surgeons were most likely to resist them, and intensive care specialists were most likely to view palliative care as within their own scope of practice. Suggestions for increasing and broadening palliative care integration and utilization included providing workforce development, education, and training; improving financial reimbursement and sustainability for palliative care; and fostering a hospital culture that turns to high -intensity care only if it meets the individual needs and goals of patients with chronic illnesses. Conclusions Initiating palliative care consultations earlier during hospitalization will require an emphasis on patient benefits and assurances that palliative care will not threaten provider autonomy. PMID:17298258

RODRIGUEZ, KERI L.; BARNATO, AMBER E.; ARNOLD, ROBERT M.

2014-01-01

11

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

12

Palliative Care Services for Indian Migrants in Australia: Experiences of the Family of Terminally Ill Patients  

PubMed Central

Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups. PMID:20606861

Shanmugasundaram, Sujatha; O'Connor, Margaret

2009-01-01

13

Palliative or Comfort Care  

MedlinePLUS

... www.ninr. nih.gov/files/palliative-care-brochure.pdf Spanish Brochure: http://www.ninr.nih.gov/sites/www.ninr. nih.gov/files/cuidadospaliativos.pdf Palliative Care, What You Should Know Center to ...

14

Palliative Care in Cancer  

MedlinePLUS

... cancer.gov/cancertopics/factsheet/Support/hospice on the Internet. Where do cancer patients receive palliative care? Cancer ... at http://www.getpalliativecare.org/providers on the Internet. The National Hospice and Palliative Care Organization’s Web ...

15

Development of a rural palliative care program in the Calgary Zone of Alberta Health Services.  

PubMed

Specialized rural models of palliative care are greatly needed to address the challenges rural communities face in providing palliative care services and to ensure that their unique strengths and needs are considered. In late 2005, a Rural Palliative Care Program was developed to support primary care providers in delivering palliative care to patients in rural communities outside of Calgary, Alberta, Canada. The program was grounded in the needs of individual communities, incorporated integral roles for local champions, and adopted pre-existing, accepted rural structures and processes. Needs and gaps in rural palliative care service delivery were identified and prioritized. The following actions were taken to address the top six priorities: 1) more accessible palliative care education opportunities with a rural focus were provided to health care professionals; 2) linkages with rural and urban resources were strengthened and access to specialists and procedures was improved; 3) strategies were implemented to improve psychosocial support for patients and families; 4) resources were developed to facilitate rural home deaths; 5) opportunities were expanded for education and utilization of volunteers; and 6) a mobile specialist consultation team was developed to support rural health care professionals and their patients in their rural communities. In its first four years, the team consulted on 640 patients, nearly three-quarters of whom died in their rural communities. Rather than imposing an urban outreach strategy, the development of a rural-based program through respectful engagement of local providers has proven to be crucial to the success of this rural palliative care program. PMID:22560359

Spice, Ron; Read Paul, Linda; Biondo, Patricia D

2012-05-01

16

Palliative Care  

MedlinePLUS

... Making Decisions About End-of-Life Care DNR/DNI/AND End of Life Immediately After Death Months ... Making Decisions About End-of-Life Care DNR/DNI/AND End of Life Immediately After Death Months ...

17

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

18

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

Microsoft Academic Search

ContextDespite rapid proliferation of hospital-based palliative care consultation services (PCCSs) 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.

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

2011-01-01

19

[Palliative care, health and region].  

PubMed

With the advent of the HPST (Hospital, Patients, Health and Regions) law, the area of Le Voironnais (Isère) and its healthcare institutions provide a structured health service favouring patients' access to palliative care whatever their age. To achieve this, they set up a management committee to which they integrated very early on a mobile palliative care team (EMSP). Despite their diversity, the institutions follow a common strategy in which the needs of elderly patients requiring palliative care are recognised in all accommodation sectors. PMID:20560273

Bertrand, Malik; Mallon, Anne-Catherine

2010-01-01

20

Center to Advance Palliative Care  

MedlinePLUS

... Course Demos Membership Brochure Join Registry National Palliative Care Registry™ The National Palliative Care Registry™ collects operational ... ET (Members Only) Enhancing Access to Rural Palliative Care with Marie A. Bakitas and Dr.Elizabeth A. ...

21

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

22

“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

23

NICU perspectives on palliative care.  

PubMed

Few health care professionals have received palliative care training to comfort dying infants and their families. One institution's development of a palliative care program in the neonatal intensive care unit setting is discussed in this column. PMID:22849627

Thibeau, Shelley; Naquin, Lori

2012-08-01

24

Characteristics of a palliative care consultation service with a focus on pain in a German university hospital  

PubMed Central

Background A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments. The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy. Methods We retrospectively analysed the PCCS documentation of three years. Results Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice. Conclusion This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support symptom control and may give the required advice to patients, their carers, and their families. PMID:25276095

2014-01-01

25

Palliative Care Hospitalists and Intensivists  

E-print Network

(e.g., heart failure, pulmonary disease, dementia), challenging sce- narios (e.g., withholding fluids of Education, Palliative Care Service, Massachusetts General Hospital Assistant Professor of Medicine, Harvard Medical School Kristen G. Schaefer, MD Director of Medical Student and Resident Education, Division

Goodrich, Lisa V.

26

Palliative care for Sikhs.  

PubMed

This article provides an overview of the palliative care needs of Sikh patients. It describes the basis of Sikh beliefs and practices and discusses practical aspects of caring for terminally ill Sikh patients and their families. Issues before and after death are considered and the importance of an individual approach is highlighted. PMID:14676727

Gatrad, Rashid; Panesar, Sukhmeet Singh; Brown, Erica; Notta, Hardev; Sheikh, Aziz

2003-11-01

27

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.

28

Oncologist Factors That Influence Referrals to Subspecialty Palliative Care Clinics  

PubMed Central

Purpose: Recent research and professional guidelines support expanded use of outpatient subspecialty palliative care in oncology, but provider referral practices vary widely. We sought to explore oncologist factors that influence referrals to outpatient palliative care. Methods: Multisite, qualitative interview study at three academic cancer centers in the United States with well-established palliative care clinics. Seventy-four medical oncologists participated in semistructured interviews between February and October 2012. The interview guide asked about experiences and decision making regarding outpatient palliative care use. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine themes related to palliative care referral decisions. Results: We identified three main oncologist barriers to subspecialty palliative care referrals at sites with comprehensive palliative care clinics: persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy, a predominant belief that providing palliative care is an integral part of the oncologist's role, and a lack of knowledge about locally available services. Participants described their views of subspecialty palliative care as evolving in response to increasing availability of services and positive referral experiences, but emphasized that views of palliative care as valuable in addition to standard oncology care were not universally shared by oncologists. Conclusions: Improving provision of palliative care in oncology will likely require efforts beyond increasing service availability. Raising awareness of ways in which subspecialty palliative care complements standard oncology care and developing ways for oncologists and palliative care physicians to collaborate and integrate their respective skills may help. PMID:24301842

Schenker, Yael; Crowley-Matoka, Megan; Dohan, Daniel; Rabow, Michael W.; Smith, Cardinale B.; White, Douglas B.; Chu, Edward; Tiver, Greer A.; Einhorn, Sara; Arnold, Robert M.

2014-01-01

29

Grief and Palliative Care: Mutuality  

PubMed Central

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

Moon, Paul J

2013-01-01

30

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

31

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

32

The pharmacology of palliative care.  

PubMed

Various medications are available for symptom management during palliative care of the neonate. Neonatal nurses are knowledgeable about the use of these agents as a part of curative care and should become familiar with them as an essential aspect of palliative care. Pharmacologic symptom management is only one facet of peaceful, pain-free, family-centered palliative care. For an overview of a complete protocol for end-of-life care for neonates and their families, review Catlin and Carter's article, "Creation of a Neonatal End-of-Life Palliative Care Protocol," which appeared in an earlier issue of Neonatal Network (Vol. 21, No. 4). PMID:15612421

Bell, Susan Givens

2004-01-01

33

Frequently Asked Questions (Palliative Care: Conversations Matter)  

MedlinePLUS

... Questions Frequently Asked Questions 1. What is palliative care and when is it provided? Palliative care is ... Does my child have to be in hospice care to receive palliative care? No, your child does ...

34

The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.  

PubMed

With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. PMID:23758771

Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C

2014-01-01

35

Palliative Care Hospitalists and Intensivists  

E-print Network

in advanced illness; diverse diseases (e.g., heart failure, pulmonary disease, dementia), challenging sce Harvard Medical School Department of Continuing Education and Center for Palliative Care Dana Council of Graduate Medical Education competencies: · Patient care: Palliative care is compassionate

Chou, James

36

Pharmaceutical services in a Mexican pain relief and palliative care institute  

PubMed Central

Neither the purchase nor the distribution of pharmaceuticals in hospitals and community pharmacies in Mexico is under the care of pharmacists. Some are under control of physicians. This report presents the results of the implementation of somef pharmaceutical services for the Jalisco Pain Relief, and Palliative Care Institute (Palia Institute), under the direction of the Secretary of Health, Government of Jalisco. The services implemented were drug distribution system, Drug Information Service, Pharmacovigilance Program, and home pharmacotherapy follow-up pilot program for patients with advanced illness, with the ultimate using the appropriate medication. The drug distribution system included dispensing of opioid pain medications, antidepressants, anticonvulsants, NSAIDs, anxiolytic drugs, steroid drugs, laxatives, and anti-emetics. The frequently used drugs were morphine sulfate (62%), amitriptyline (6.4%), and dextropropoxyphene (5.8%). The Drug Information Service answered 114 consultations, mainly asked by a physician (71%) concerned with adverse drug reactions and contraindications (21%). The pharmacovigilance program identified 146 suspected adverse drug reactions and classified them reasonably as possible (27%), probable (69%), and certain (4%). These were attributed mainly to pregabalin and tramadol. The home pharmacotherapy follow-up pilot program cared patients with different cancer diagnoses and drug-related problems (DRP), which were identified and classified (according to second Granada Consensus) for pharmaceutical intervention as DRP 1 (5%), DRP 2 (10%), DRP 3 (14%), DRP 4 (19%), DRP 5 (24%), or DRP 6 (28%). This report provides information concerning the accurate use of medication and, above all, an opportunity for Mexican pharmacists to become an part of health teams seeking to resolve drug-related problems. PMID:25170355

Escutia Gutiérrez, Raymundo; Cortéz Álvarez, César R.; Álvarez Álvarez, Rosa M.; Flores Hernández, Jorge LV.; Gutiérrez Godínez, Jéssica; López Y López, José G.

37

EXAMINING PALLIATIVE CARE NETWORKS IN ENHANCING COMMUNITY PALLIATIVE CARE  

Microsoft Academic Search

Introduction\\u000aDespite increasing global interest in regional palliative care networks (PCN) to integrate care, little explicit direction exists to guide their evaluation. The first step of this research was to develop a comprehensive conceptual framework using a systems approach for evaluating integrated palliative care. This framework was then used to guide a rigorous examination of a selected PCN.\\u000aMethods\\u000aThe

Daryl Bainbridge

2011-01-01

38

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

39

Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer.  

PubMed

Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. PMID:25492970

Rassouli, Maryam; Sajjadi, Moosa

2014-12-01

40

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

41

Competing discourses in palliative care  

Microsoft Academic Search

Background  Palliative care focuses on early identification as well as prevention and alleviation of suffering. Previous studies have\\u000a established that palliative care is a disciplinary area in a state of transformation due to the involvement of different professional\\u000a categories and that nursing care in the palliative context is influenced by the dominance of the medical perspective.\\u000a \\u000a \\u000a \\u000a \\u000a Aim  This study aimed to describe

Elisabeth Dahlborg-Lyckhage; Eva Lidén

2010-01-01

42

The challenge of palliative care  

Microsoft Academic Search

.  ?Palliative care is patient-centered, rather than disease-focused; accepts the inevitability of death while simultaneously\\u000a is life-affirming; addresses psychological, social, and spiritual concerns as well as physical ones; and is best delivered\\u000a by a multiprofessional team working in partnership with patients and their families. Palliative care stresses the importance\\u000a of “appropriate treatment” and the need for doctors not to prescribe a

R. G. Twycross

2002-01-01

43

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

44

Treatment Approaches (Palliative Care)  

MedlinePLUS

... that address feelings of disappointment, remorse, and loss of personal identity. Some patients receive comfort from talking to a chaplain or minister about such topics as religion, death, and afterlife. ... Academy of Hospice and Palliative Medicine American Board of Hospice ...

45

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

PubMed

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

Daly, Donnelle; Matzel, Stephen Chavez

2013-01-01

46

Palliative care in advanced dementia.  

PubMed

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

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

2014-08-01

47

[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, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff. PMID:25595087

Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu

2014-12-01

48

Practical Aspects of Palliative Care  

E-print Network

populations (e.g., pediatrics, geriatrics), different diseases (e.g., heart failure, pulmonary disease Medical School Center for Palliative Care and Department of Continuing Education Dana-Farber Cancer Medical Education competencies: Patient Care, Medical Knowledge, Practice-Based Learning and Improvement

Chou, James

49

Impact of Specialist Home-Based Palliative Care Services in a Tertiary Oncology Set Up: A Prospective Non-Randomized Observational Study  

PubMed Central

Background: Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. Materials and Methods: Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters. Results: Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. Conclusion: Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction. PMID:25709182

Dhiliwal, Sunil R; Muckaden, Maryann

2015-01-01

50

Palliative Care Questions and Answers (Hospice Care Comparison)  

MedlinePLUS

... plans have a hospice benefit Is this a package deal? No, there is no ‘palliative care’ package, the services are flexible and based on the patient’s needs Medicare and Medicaid hospice benefits are package deals How long can I receive care? This ...

51

The Program in Palliative Care  

E-print Network

;NickNixon Medicine and Nursing Need Leaders in Palliative Care Education Only 60% of hospitals have experiences for physician and nurse educators who wish to become expert in the clinical practice and teaching of leaders and edu- cators who can train the next generation of clinicians, and lead new programs to improve

Datta, Sandeep Robert

52

The Israel Cancer Association's role as a volunteer organization in forecasting, establishing, implementing and upgrading palliative care services in Israel.  

PubMed

The Israel Cancer Association has contributed, as a key player, to the establishment and upgrade of palliative care in Israel. The aim of this article is to describe the involvement and contribution of the ICA, as a volunteer organization, from a clinical, educational, legal, and organizational perspective. Another main goal of this survey is to shed light on the palliative care network in Israel, in each one of these infrastructures. PMID:23171783

Kislev, Livia; Yaffe, Aliza; Ziv, Miri; Waller, Alexander

2013-10-01

53

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

54

Providing palliative care for newborns.  

PubMed

Palliative care principles may be applied in the NICU, may be necessary, and may benefit from the contributions of community pediatricians who have a relationship with families undergoing these tragic circumstances. Clinicians across varied disciplines can cooperate to provide an environment in the delivery room or NICU where palliative care can be integrated into patient and family care plans regardless of whether the treatment goal is obtaining a cure, prolonging life, or exclusively palliation and comfort until an expected death. Regardless of the site of care, the best interests of the patient remain the focus of such care. This care should be consistent with the goals and preferences of the family, and respectful of their culture and faith traditions. The physical comfort of the infant and the emotional, psychosocial, and spiritual well-being of his/her family (including siblings and grandparents) all require active management and support. Finally, bereavement support should be provided following an infant's death to help families integrate their loss into their lives. PMID:15559703

Carter, Brian S

2004-11-01

55

Program assessment framework for a rural palliative supportive service.  

PubMed

Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation. PMID:25278757

Pesut, Barbara; Hooper, Brenda; Sawatzky, Richard; Robinson, Carole A; Bottorff, Joan L; Dalhuisen, Miranda

2013-01-01

56

Program Assessment Framework for a Rural Palliative Supportive Service  

PubMed Central

Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation. PMID:25278757

Pesut, Barbara; Hooper, Brenda; Sawatzky, Richard; Robinson, Carole A; Bottorff, Joan L; Dalhuisen, Miranda

2013-01-01

57

Palliative Care: What You Should Know  

MedlinePLUS

... whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative ... In short, you can expect the best possible quality of life. 6 ? Palliative care is provided by a team ...

58

Palliative Care Doula: an innovative model.  

PubMed

Walking the journey of serious illness is very difficult and stressful for patients and families. A universal principle of palliative care is caring for the patient/ family unit. This article introduces a model for the Palliative Care Doula for experienced and advanced practice palliative care nurses to support patients and families during the traumatic and vulnerable period of end-of-life care. PMID:25296488

Lentz, Judy C

2014-01-01

59

Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives  

Microsoft Academic Search

BACKGROUND: Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In

Saskia Jünger; Andrea E Vedder; Sigurd Milde; Thomas Fischbach; Boris Zernikow; Lukas Radbruch

2010-01-01

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:22405433

Huffman, Joan L

2012-03-01

61

Update in Hospital Palliative Care  

PubMed Central

Background Seriously ill patients frequently receive care in hospitals, and palliative care is a core competency for hospitalists. We aimed to summarize and critique recent research that has the potential to impact the clinical practice of palliative care in the hospital. Methods We reviewed articles published between January 2012 and May 2013, identified through hand-search of leading journals and PubMed. The authors collectively selected 9 articles based on their scientific rigor and relevance to hospital practice. We review their findings, strengths and limitations and make recommendations for practice. Results Key finding include: Indwelling pleural catheters and talc pleurodesis provide similar relief of dyspnea in patients with malignant pleural effusions; Oxygen many not be needed to prevent dyspnea in many dying patients; Docusate may not be needed in addition to sennosides to treat opioid-induced constipation; Atropine is no more effective than placebo in treating respiratory rattles in dying patients; Many older adult survivors of in-hospital CPR are alive up to one year after discharge; Observing CPR may decrease family post-traumatic stress; Surrogates of ICU patients often interpret prognostic information optimistically; Many patients with metastatic cancer feel that chemotherapy may cure their disease; Viewing a goals of care video may decrease preference for CPR in patients being admitted to skilled nursing facilities. Conclusions Recent research provides important insights into the effectiveness of medications and interventions for symptom management, outcomes of CPR for patients and families, and communication and advance care planning in the hospital. PMID:24214838

Anderson, Wendy G.; Flint, Lynn A.; Horton, Jay R.; Johnson, Kimberly; Mourad, Michelle; Sharpe, Bradley A.

2013-01-01

62

The e-Hospice - Beyond traditional boundaries of palliative care  

Microsoft Academic Search

The term palliative care refers to the care for patients with terminal conditions. Tradition- ally, much of this end-of-life care has been provided by hospices or acute care centres. As healthcare systems face aging patient demographics and struggle with the need to deliver qual- ity services with fewer resources, we must find new approaches to healthcare delivery. Some of the

Craig E. Kuziemsky; Jens H. Jahnke; Francis Lau

2006-01-01

63

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.

64

Palliative care in the fetus and newborn  

Microsoft Academic Search

The changing environment in neonatology and perinatology has led to the examination of issues surrounding palliative care. Newborn palliative care should be considered in three general areas: (1) Neonates at the limits of viability. As advances in technology and outcomes become available, it is the responsibility of the health-care community and society to reach a consensus regarding the limits of

J Bhatia

2006-01-01

65

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

66

Palliative care and hematologic oncology: the promise of collaboration.  

PubMed

Palliative medicine provides active evaluation and treatment of the physical, psychosocial and spiritual needs of patients and families with serious illnesses, regardless of curability or stage of illness. The hematologic malignancies comprise diverse clinical presentations, evolutions, treatment strategies and clinical and quality of life outcomes with dual potential for rapid clinical decline and ultimate improvement. While recent medical advances have led to cure, remission or long-term disease control for patients with hematologic malignancy, many still portend poor prognoses and all are associated with significant symptom and quality of life burden for patients and families. The gravity of a diagnosis of a hematologic malignancy also weighs heavily on the medical team, who typically develop close and long-term relationships with their patients. Palliative care teams provide an additional layer of support to patients, family caregivers, and the primary medical team through close attention to symptoms and emotional, practical, and spiritual needs. Barriers to routine palliative care co-management in hematologic malignancies include persistent health professional confusion about the role of palliative care and its distinction from hospice; inadequate availability of palliative care provider capacity; and widespread lack of physician training in communicating about achievable goals of care with patients, family caregivers, and colleagues. We herein review the evidence of need for palliative care services in hematologic malignancy patients in the context of a growing body of evidence demonstrating the beneficial outcomes of such care when provided simultaneously with curative or life-prolonging treatment. PMID:22874874

Epstein, Andrew S; Goldberg, Gabrielle R; Meier, Diane E

2012-11-01

67

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

68

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

69

[Specialized palliative home care : An interprofessional network].  

PubMed

Specialized palliative home care ("Spezialisierte Ambulante Palliativversorgung", SAPV) denotes an intensified, multi-professional support system at home for patients suffering from complex symptoms and needs associated with severe and advanced illness. In 2007, a change in legislation guaranteed SAPV to any patient (covered by public health insurance) in need of specialized palliative care. Despite further specifications by federal institutions, SAPV has been transferred into German clinical practice in a very regionally diverse manner. This contribution describes the legislative and conceptual framework of SAPV, the financial and clinical aspects, and its future perspectives for the comprehensive palliative care of patients with complex demands. PMID:25673015

Alt-Epping, Bernd; Nauck, F

2015-04-01

70

Middle East experience in palliative care.  

PubMed

Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country. PMID:22495789

Zeinah, Ghaith F Abu; Al-Kindi, Sadeer G; Hassan, Azza Adel

2013-02-01

71

Palliative medicine in neonatal and pediatric intensive care.  

PubMed

Patients and families in NICU and PICU settings can be well served by fundamental palliative care approaches during curative and end-of-life care.A wide variety of patients are suitable for these services. Although barriers exist to implementing these teams within the ICU, the concepts remain sound,and models for successful integration of practices in these settings exist. PMID:16797448

Carter, Brian S; Hubble, Chris; Weise, Kathryn L

2006-07-01

72

Issues in Rural Palliative Care: Views from the Countryside  

ERIC Educational Resources Information Center

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

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

2010-01-01

73

Cultural and religious aspects of palliative care  

PubMed Central

For most clinicians and patients, the discussion of palliative care is a difficult topic. It is complicated by both the clinician's and patient's belief systems, which are frequently heavily influenced by cultural and religious upbringing. This article discusses the impact of some of those differences on attitudes toward end of life decisions. Several different religions and cultures have been evaluated for their impact on perceptions of palliative care and the authors will share some examples. PMID:22229141

Steinberg, Steven M

2011-01-01

74

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

75

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

PubMed

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

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

2015-01-01

76

[Palliative care: interfaces, conflicts and necessities].  

PubMed

The kind of care delivered to patients with advanced and terminal diseases has been under intense debate in the specialized literature. This paper describes and analyzes, on the basis of a bibliographic review, medical care practices at the end of life, with special emphasis to palliative care, a model expanding worldwide. It analyzes, from the perspective of bioethics, some morally relevant aspects involving these practices, that tend to conflict among themselves. Specifically in the field of palliative care the paper emphasizes certain difficulties and challenges involving autonomy, considered one of the cornerstones of good end of life care practices. PMID:19039396

Floriani, Ciro Augusto; Schramm, Fermin Roland

2008-12-01

77

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

PubMed

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

Stilos, Kalli; Daines, Pat

2013-03-01

78

The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography.  

PubMed

Objective: Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center. Method: In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families. Results: Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support. Significance of results: The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program. PMID:24168724

Williams-Reade, Jackie; Lamson, Angela L; Knight, Sharon M; White, Mark B; Ballard, Sharon M; Desai, Priti P

2013-10-29

79

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

PubMed Central

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

80

Is euthanasia compatible with palliative care?  

PubMed

There has been a gradual shift in the attitude of the medical community as well as the lay public towards greater acceptance of euthanasia as an option for care of the terminally ill and dying. There have also been calls by certain groups to actually legalize voluntary euthanasia and physician-assisted suicide for patients who meet certain conditions, some of which are as follows: that the patient be of a sound mind, suffering from an incurable or terminal illness, experiencing unbearable suffering and uncontrollable pain. The rationale for legalizing euthanasia is based on the principle of the patient's right of self-determination and the duty of doctors to relieve pain and suffering at all times. A few within the medical community quickly saw certain similarities in terms of goals and aims between euthanasia and palliative care and, thus, proposed that euthanasia be an option or choice for difficult palliative care cases. Some even went as far as to suggest that euthanasia and palliative care be part of the continuum of care for terminally ill patients. When palliative medicine fails to fully control pain and suffering for the patient, euthanasia can be the logical next step in the continuum of care. This article seeks to discuss why the rationale for legalizing euthanasia is flawed, why euthanasia goes against the fundamental principles of Medicine in general and why it is incompatible with the practice of palliative medicine. PMID:10489499

Low, J A; Pang, W S

1999-05-01

81

Providing palliative care in primary care: how satisfied are GPs and district nurses with current out-of-hours arrangements?  

PubMed

The complex needs of palliative care patients require an informed, expert, and swift response from out-of-hours general medical services, particularly if hospital admission is to be avoided. Few general practitioners (GPs) reported routinely handing over information on their palliative care patients, particularly to GP co-operatives. District nurses and inner-city GPs were least satisfied with aspects of out-of-hours care. Most responders wanted 24-hour availability of specialist palliative care. This indicates a need to develop and evaluate out-of-hours palliative care procedures and protocols, particularly for GP co-operatives, and to improve inter-agency collaboration. PMID:10962787

Shipman, C; Addington-Hall, J; Barclay, S; Briggs, J; Cox, I; Daniels, L; Millar, D

2000-06-01

82

Pediatric palliative and hospice care: Pennsylvania's model of collaboration.  

PubMed

In the state of Pennsylvania, a collaborative model has been developed for improving pediatric palliative care and end-of-life care services to children with life-limiting conditions and their families. The inspiration and efforts of several bereaved parents provided the initial impetus for this encouraging model. Pennsylvania's model involves cooperation and collaboration among several groups and initiatives across the state, as well as the integration of parent-professional collaboration at all levels and in each initiative. The collaborating groups include 1) a volunteer grassroots resource and education initiative, Helping Hands-Healing Hearts; 2) the Pittsburgh Pediatric Palliative Care Coalition, a coalition of concerned parents and experienced palliative and hospice care providers working together to improve service availability; and 3) the Pennsylvania Children's Hospice and Palliative Care Coalition, which developed as an outcome of a state-level Pennsylvania Pediatric Hospice Care Task Force, and which, among other activities, works with the Pennsylvania Department of Public Welfare and several Pennsylvania legislators on pertinent policy and legislative initiatives. PMID:20361447

Hawley, Betsy

2010-01-01

83

Modelling the landscape of palliative care for people with dementia: a European mixed methods study  

PubMed Central

Background Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. PMID:23937891

2013-01-01

84

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

85

Speech and language therapists in palliative care: what do we have to offer?  

PubMed

Speech and language therapists (SLTs) are specialists in the management of communication and swallowing disorders (dysphagia); however, few are members of acute and community specialist palliative care teams in the UK. Although numbers of SLTs working in palliative care are increasing, there is a need for education and research to support service development and promote understanding of their role. This profile piece outlines what SLTs have to offer patients with palliative care needs and describes how their role in palliative care is increasing in the UK. PMID:15924034

Eckman, Samantha; Roe, Justin

2005-04-01

86

Teaching small groups in palliative care.  

PubMed

Small group learning (i.e., tutorial, seminar, or small problem-solving class) is uniquely suited to transformative change as the ultimate goal of education, and especially appropriate for use in teaching about palliative care. The small group can be a fertile environment for both individual and communal development on both personal and professional levels by recognizing the unique needs of small group facilitation, and developing necessary faculty skills, and by modeling thoughtful preparation, reflective execution, and perceptive feedback. The small group learning approach focuses on learning facilitation and enhancing students' communications skills, which are vital to providing effective, patient-centered palliative care. PMID:21244259

Macauley, Robert; Billings, J Andrew

2011-01-01

87

Intercultural palliative care: do we need cultural competence?  

PubMed

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

Gunaratnam, Yasmin

2007-10-01

88

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

PubMed

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

Hermes, Hélida Ribeiro; Lamarca, Isabel Cristina Arruda

2013-09-01

89

Five Policies to Promote Palliative Care for Patients with ESRD  

PubMed Central

Summary 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

Meier, Diane E.

2013-01-01

90

European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care.  

PubMed

The European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review. PMID:19858355

Cherny, Nathan I; Radbruch, Lukas

2009-10-01

91

Processes of consent in palliative care research  

E-print Network

Processes of consent in palliative care research Dr Gareth Owen Wellcome Trust Fellow in bioethics and consultant psychiatrist Department of Psychological Medicine Institute of Psychiatry #12;Informed consent relationship #12;The "no" principle · Consent to research premised on agreement · This makes the ethics

Kühn, Reimer

92

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.

93

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.

94

Palliative care for Parkinson's disease: has the time come?  

PubMed

Although Parkinson's disease (PD) is traditionally viewed as a movement disorder which affects quality of life, recent literature has revealed an increased mortality, a high burden of difficult-to-manage non-motor symptoms (e.g., pain, fatigue), high caregiver distress, and a high utilization of medical services especially in the last year of life. Current medical systems have yet to adequately respond to this mounting evidence through the adoption of palliative care practices and through the provision of palliative care services to both PD patients and to affected families. This holistic, interdisciplinary approach to practice would enhance care delivery, identify and address unmet needs, and avoid interventions and hospitalizations especially in the last months of life. As we approach an era of increased life expectancy, increasing comorbidities among patients, and escalating healthcare costs, physicians must be proactive in focusing on quality of life, reducing medical interventions, and respecting patient autonomy. PMID:25795037

Miyasaki, Janis M; Kluger, Benzi

2015-05-01

95

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

96

Informed consent in palliative care clinical trials: challenging but possible.  

PubMed

Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. The inclusion of patients who are seriously ill, and therefore potentially vulnerable, requires careful exploration of ethical and legal principles that underpin informed consent. Specific challenges in obtaining informed consent for randomised clinical trials (RCTs) in clinically unstable populations such as hospice and palliative care include higher rates of people with impaired cognitive capacity as well as interventional studies in clinical situations which may present as a sudden change in condition. None of these challenges is unique to hospice and palliative care research, but the combination and frequency with which they are encountered require systematic and considered solutions. This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced); a proxy (or legally authorised representative); or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability. PMID:23631612

Agar, Meera; Ko, Danielle N; Sheehan, Caitlin; Chapman, Michael; Currow, David C

2013-05-01

97

The oncology palliative care clinic at the Princess Margaret Cancer Centre: an early intervention model for patients with advanced cancer.  

PubMed

Several recently published randomized controlled trials have demonstrated the benefits of early palliative care involvement for patients with advanced cancer. In the oncology outpatient setting, palliative care clinics are an ideal site for the provision of early, collaborative support, which can be maintained throughout the cancer trajectory. Despite this, access to ambulatory palliative care clinics is limited, even at tertiary cancer centres. Existing programs for outpatient palliative care are variable in scope and are not well described in the literature. We describe the development and expansion of an outpatient palliative care clinic at the Princess Margaret Cancer Centre, Toronto, Canada, demonstrating how the clinic functions at a local and regional level. This clinic served as the intervention for a recent large cluster-randomized trial of early palliative care. The model for this service can be adapted by other palliative care programs that aim to provide early, integrated oncology care. PMID:25281230

Hannon, Breffni; Swami, Nadia; Pope, Ashley; Rodin, Gary; Dougherty, Elizabeth; Mak, Ernie; Banerjee, Subrata; Bryson, John; Ridley, Julia; Zimmermann, Camilla

2015-04-01

98

Cultural competency and diversity among hospice palliative care volunteers.  

PubMed

This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers. PMID:21636588

Jovanovic, Maja

2012-05-01

99

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

100

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

101

Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.  

PubMed

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units. PMID:22990428

Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

2012-09-01

102

Palliative cancer care in Middle Eastern countries: accomplishments and challenges †  

PubMed Central

Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family. PMID:22628412

Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.

2012-01-01

103

Supportive and palliative care of pancreatic cancer.  

PubMed

Pancreatic cancer is one of the most lethal malignancies. An estimated 32,300 patients will die of pancreatic cancer in year 2006. It is the tenth most common malignancy in the United States. Despite recent advances in pathology, molecular basis and treatment, the overall survival rate remains 4% for all stages and races. Palliative care represents an important aspect of care in patient with pancreatic malignancy. Identifying and treating disease related symptomology are priorities. As a physician taking care of these patients it is essential to know these symptoms and treatment modalities. This review discusses symptom management and supportive care strategies. Common problems include pain, intestinal obstruction, biliary obstruction, pancreatic insufficiency, anorexia-cachexia and depression. Success is needed in managing these symptoms to palliate patients with advanced pancreatic cancer. Pancreatic cancer is a model illness to learn the palliative and supportive management in cancer patient. It is important for oncologists to recognize the importance of control measures and supportive measures that can minimize the symptoms of advanced disease and side effects of cancer treatment. PMID:17356251

Fazal, Salman; Saif, Muhammad Wasif

2007-01-01

104

Late Effects of Treatment and Palliative Care  

Microsoft Academic Search

\\u000a Identifying late effects of treatment and integrating palliative care when appropriate, are increasingly recognized as important\\u000a elements of childhood tumor management. Patients with CNS tumors are at high risk for mortality, and survivors have high morbidity\\u000a rates related to the late effects of treatment. While intensified therapy has improved survival in patients with pediatric\\u000a brain tumors (Packer et al. 1999,

Denah Taggart; Robert Goldsby; Anuradha Banerjee

105

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.

106

Hospice palliative care volunteers: The benefits for patients, family caregivers, and the volunteers.  

PubMed

Objective: Terminally ill patients and family caregivers can benefit greatly from the support and care provided by trained hospice palliative care volunteers. The benefits of doing this kind of volunteer work also extend to the volunteers themselves, who often say they receive more than they give from the patients/families they are "privileged" to be with. The purpose of this article is to demonstrate how hospice palliative care volunteerism benefits both the patients and families who utilize this service as well as the volunteers. Method: A review of studies demonstrating how terminally ill patients, and especially family caregivers, can benefit from the use of hospice palliative care volunteers and how the volunteers themselves benefit from their experiences. Results: Terminally ill patients and families receive many benefits from using the services of hospice palliative care volunteers, including emotional support, companionship, and practical assistance (e.g., respite or breaks from caregiving). Volunteering in hospice palliative care also provides many benefits for the volunteers, including being able to make a difference in the lives of others, personal growth, and greater appreciation of what is really important in life. Significance of results: More needs to be done to promote the value of hospice palliative care volunteers to those who can really benefit from their support and care (i.e., patients and their families) as well as to help people recognize the potential rewards of being a hospice palliative care volunteer. It is a win-win situation. PMID:24901841

Claxton-Oldfield, Stephen

2014-06-01

107

Measuring outcomes in randomized prospective trials in palliative care.  

PubMed

Palliative care aims to improve the quality of life of patients and their families and reduce suffering from life-threatening illness. In assessing palliative care efficacy, researchers must consider a broad range of potential outcomes, including those experienced by the patient's family/caregivers, clinicians, and the health care system. The purpose of this article is to summarize the discussions and recommendations of an Outcomes Working Group convened to advance the palliative care research agenda, particularly in the context of randomized controlled trials. These recommendations address the conceptualization of palliative care outcomes, sources of outcomes data, application of outcome measures in clinical trials, and the methodological challenges to outcome measurement in palliative care populations. As other fields have developed and refined methodological approaches that address their particular research needs, palliative care researchers must do the same to answer important clinical questions in rigorous and credible ways. PMID:17532180

Mularski, Richard A; Rosenfeld, Kenneth; Coons, Stephen Joel; Dueck, Amylou; Cella, David; Feuer, David J; Lipscomb, Joseph; Karpeh, Martin S; Mosich, Tom; Sloan, Jeff A; Krouse, Robert S

2007-07-01

108

Palliative care in the emergency department.  

PubMed

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

109

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

110

'My dreams are shuttered down and it hurts lots’–a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda  

PubMed Central

Background Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services. Methods Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically. Results 189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful. Conclusions The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain’ in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids. PMID:24098941

2013-01-01

111

From margins to centre: a review of the history of palliative care in cancer.  

PubMed

Palliative care and hospices have developed rapidly since the late 1960s. The pioneering work of Cicely Saunders was instrumental in drawing attention to the end-of-life care needs of patients with advanced malignant disease. Palliative care began to be defined as a subject of activity in the 1970s and came to be synonymous with the physical, social, psychological, and spiritual support of patients with life-limiting illness, delivered by a multidisciplinary team. Palliative care services have developed in many settings and have often been closely related to oncology. The worldwide need for this type of care remains much greater than the available provision, but there are encouraging signs of recognition by policymakers and influential bodies, and interest in palliative care has never been greater. This paper charts the modern history of such care around the world and concludes on some current issues and future challenges. PMID:17466900

Clark, David

2007-05-01

112

Palliative care consultation versus palliative care unit: which is associated with shorter terminal hospitalization length of stay among patients with cancer?  

PubMed

Hospital length of stay (LoS) may be used to assess end-of-life care aggressiveness and health care delivery efficiency. We describe the terminal hospitalization LoS of patients with cancer managed by a hospital-based palliative care (PC) program comprising a palliative care consultation (PCC) service and an inpatient palliative care unit (PCU). A total of 328 in-hospital cancer deaths were divided into 2 groups. The PCU group included patients admitted by the PC team directly to the PCU. The PCC group included patients admitted by other specialties and referred to the PCC team. The LoS of the PCU group was significantly shorter than that of the PCC group (9.9 [±9.4] vs 17.8 [±19.7] days, respectively; P < .001). Direct terminal hospitalization to PCU is not associated with longer LoS among cancer deaths managed by a hospital-based PC service. PMID:24301082

Alsirafy, Samy A; Abou-Alia, Ahmad M; Ghanem, Hafez M

2015-05-01

113

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

PubMed

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

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

2015-04-01

114

Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients  

PubMed Central

Abstract Background Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patient's death. Purpose To develop clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. Methods (1) Literature review; (2) focus groups and structured interviews with key stakeholders within Australia; (3) national and international expert opinion to further develop and refine the guidelines using a modified Delphi process; and (4) endorsement of the guidelines from key palliative care, caregiver, and bereavement organizations (national and international). Results The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. These consensus-based guidelines have been endorsed key Australian and international organizations. Conclusions The guidelines may prove valuable for the international palliative care community and for generalist health care providers who occasionally care for palliative care patients. Research is recommended to explore the uptake, implementation, and effectiveness of the guidelines. PMID:22385026

Remedios, Cheryl; Zordan, Rachel; Thomas, Kristina; Clifton, Di; Crewdson, Michael; Hall, Christopher; Trauer, Tom; Bolleter, Amanda; Clarke, David M.; Bauld, Catherine

2012-01-01

115

[Palliative care in the light of legal and regulatory requirements in Germany].  

PubMed

In Germany, palliative care has developed rapidly since the establishment of the first palliative care unit in 1983. More improvements in patient-centered care are only possible if legal requirements as well as education of physicians, nurses, and other professionals involved in palliative care are adapted to current needs. This paper provides an overview of legal and regulatory requirements including a critical appreciation of their influence on palliative care in Germany. Only recently has medical education in palliative medicine been implemented as an integral part of medical studies at German universities. Starting in 2014, physicians applying for a license to practice medicine will have to provide a certificate of basic training in this field. The challenge in upcoming years will be the establishment and enhancement of comprehensive, standardized, and quality-controlled education at the universities. Only six universities have established chairs for palliative medicine, and it will be essential to not only establish more chairs but also to involve medical students in the development of the education. Only minimal requirements are specified for education of nurses in palliative care in the legislation. However, standardized and quality-controlled advanced training courses are available. This training is frequently requested as a prerequisite for nurses working in palliative care. Only limited education programs exist for other professional groups that are an important part of the palliative care team. In addition to the development of palliative care for inpatients with an increasing number of palliative care units, hospices, and first chairs of palliative medicine, different forms of ambulant palliative care services have been developed. Changes in the legislation have influenced the situation for home care enormously in the last 5 years, also making it more complex. With the Law for the Consolidation of the Competition in Compulsory Health Insurance ("Gesetz zur Stärkung des Wettbewerbs in der gesetzlichen Krankenversicherung"), a legal claim for palliative home care has been implemented in the fifth book of the social law in 2007. The ambitious goal of full coverage with comprehensive palliative home care has still not been achieved in most locations. However, after initial negotiation difficulties between palliative care providers and health insurance funds, an increasing number of contracts have been made. As a consequence-in addition to more than 240 palliative care units in Germany-more than one hundred palliative care teams have begun work in the field of specialized palliative home care. Legal regulations for the supply of opioids and other medications for the treatment of patients at home have been adapted recently, thus, facilitating fast and comprehensive medical treatment in emergency situations. Overall, the legislation has been adapted significantly, hence, contributing to improvements for patients requiring palliative care. It remains to be seen whether additional adjustments are required in the future. PMID:22290167

Cremer-Schaeffer, P; Radbruch, L

2012-02-01

116

Palliative care in Córdoba: experience of the Marie Curie Foundation and the Oncology Service of Sanatorio del Salvador  

Microsoft Academic Search

Crdoba is a city with 1,300,000 inhabitants located in the center of Argentina. Although Palliative Medicine is a discipline\\u000a that has been present for a little over 10 years, it has not developed in step with demand, owing to lack of political will\\u000a and insufficient support from the Health Administration. However, the existing units have expanded, thanks to the efforts

L. A. Rubio

1998-01-01

117

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

118

Palliative care and pain treatment in the global health agenda.  

PubMed

The Global Atlas of Palliative Care at the End of Life, published by the Worldwide Palliative Care Alliance (WPCA) jointly with the World Health Organization (WHO) estimated that every year >20 million patients need palliative care (PC) at the end of life. Six percent of these are children. According to the Atlas, in 2011, approximately 3 million patients received PC and only 1 in 10 people in need is currently receiving it. Although most PC is provided in high-income countries (HIC), almost 80% of the global need is in low- and middle-income countries (LMIC). Only 20 countries have PC well integrated into their health-care systems. In regards to opioids, >5 billion people (83% of the world's population) live in countries with low to nonexistent access, 250 million (4%) have moderate access, and only 460 million (7%) have adequate access. In order for PC and pain treatment strategies to be effective, they must be incorporated by governments into all levels of their health care systems. In 1990, the WHO pioneered a public health strategy to integrate PC into existing health care systems which includes four components: (1) appropriate policies, (2) adequate availability of medications, (3) education of health care workers and the public, and (4) implementation of PC services at all levels throughout the society. This topical review describes the current status of the field, and presents several initiatives by United Nations (UN) organizations and the civil society to improve access to PC and to pain treatment for patients in need. PMID:25789428

De Lima, Liliana

2015-04-01

119

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

Microsoft Academic Search

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

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

2009-01-01

120

High Burden of Palliative Needs among Older Intensive Care Unit Survivors Transferred to Post–Acute Care Facilities. A Single-Center Study  

PubMed Central

Rationale: Adults with chronic critical illness (tracheostomy after ? 10 d of mechanical ventilation) have a high burden of palliative needs, but little is known about the actual use and potential need of palliative care services for the larger population of older intensive care unit (ICU) survivors discharged to post–acute care facilities. Objectives: To determine whether older ICU survivors discharged to post–acute care facilities have potentially unmet palliative care needs. Methods: We examined electronic records from a 1-year cohort of 228 consecutive adults ? 65 years of age who had their first medical-ICU admission in 2009 at a single tertiary-care medical center and survived to discharge to a post–acute care facility (excluding hospice). Use of palliative care services was defined as having received a palliative care consultation. Potential palliative care needs were defined as patient characteristics suggestive of physical or psychological symptom distress or anticipated poor prognosis. We examined the prevalence of potential palliative needs and 6-month mortality. Measurements and Main Results: The median age was 78 years (interquartile range, 71–84 yr), and 54% received mechanical ventilation for a median of 7 days (interquartile range, 3–16 d). Six subjects (2.6%) received a palliative care consultation during the hospitalization. However, 88% had at least one potential palliative care need; 22% had chronic wounds, 37% were discharged on supplemental oxygen, 17% received chaplaincy services, 23% preferred to not be resuscitated, and 8% were designated “comfort care.” The 6-month mortality was 40%. Conclusions: Older ICU survivors from a single center who required postacute facility care had a high burden of palliative care needs and a high 6-month mortality. The in-hospital postcritical acute care period should be targeted for palliative care assessment and intervention. PMID:23987743

Wunsch, Hannah; Reyfman, Paul A.; Narain, Wazim R.; Blinderman, Craig D.; Schluger, Neil W.; Reid, M. Cary; Maurer, Mathew S.; Goldstein, Nathan; Lederer, David J.; Bach, Peter

2013-01-01

121

The International Association for Hospice and Palliative Care Website.  

PubMed

The Website of the International Association for Hospice and Palliative Care is reviewed. The Association newsletter, resources, links, access to the IAHPC Manual of Palliative Care 2nd Edition, frequently asked questions, and other useful information are provided on this site. PMID:16061464

Gavrin, Jonathan R

2005-01-01

122

Negotiating palliative care expertise in the medical world  

Microsoft Academic Search

This paper explores the relationship between palliative medicine and the wider medical world. It draws on data from a focus group study in which doctors from a range of specialties talked about developing palliative care for patients with heart failure. In outlining views of the organisation of care, participants engaged in a process of negotiation about the roles and expertise

Derek Hibbert; Barbara Hanratty; Carl May; Frances Mair; Andrea Litva; Simon Capewell

2003-01-01

123

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

124

Reporting of Pediatric Palliative Care: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals  

PubMed Central

Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. Settings and Design: This was a systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs. Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care. PMID:22347775

Kumar, Senthil P

2011-01-01

125

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

126

Survey on Pediatric Palliative Care Care For Healthcare Providers (SPPCHP): Identifying Knowledge, Barriers, and Support Needs  

Microsoft Academic Search

Objective: A significant number of children suffer from life-limiting illnesses, with many dying each year in the U.S. Services, beyond standard medical care, aimed at increasing overall quality of life for children with life-limiting illnesses, are greatly needed within and outside of our hospitals. Palliative care is conceptualized as treatment provided to relieve symptoms and improve quality of life. Despite

Mary E Grimley

2011-01-01

127

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

128

Strategies for Development of Palliative Care From the Perspectives of General Population and Health Care Professionals: A Japanese Outreach Palliative Care Trial of Integrated Regional Model Study.  

PubMed

This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population. PMID:24907123

Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji

2014-06-01

129

Indonesia: status of cancer pain and palliative care.  

PubMed

Indonesia is a large archipelago with an estimated 203,000-365,400 new cancer cases a year. Most cases present in the advanced stage. Pain is the chief complaint in 89% of the patients of the palliative care unit at Dr. Soetomo hospital. The program is a community-based, family-oriented, and culturally adapted home care, widely applicable throughout the country. The service and medication should be affordable, simple, and available. The WHO three-step ladder has been adopted as the method of choice in cancer pain relief. Facilities supportive for the program are the existing health-care delivery system and non-formal support system (Indonesian Cancer Foundation and Organization for Family Welfare Promotion, PKK). The chief constraints for program implementation are the geographical and population problems, lack of resources and funding for the training of health-care workers, and limited availability of oral morphine. PMID:8754994

Soebadi, R D; Tejawinata, S

1996-08-01

130

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

131

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

132

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

133

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

PubMed

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

Feudtner, Chris; Nathanson, Pamela G

2014-02-01

134

Pediatric pain management in palliative care.  

PubMed

The management of pain in pediatric palliative care (PPC) is essential. Whilst the field of pain management has developed over the years, much of what is done in PPC is based on anecdotal evidence or adult studies. This review explores recent developments in pain management in PPC, in particular the WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. Key issues discussed include the definition, assessment, pharmacological and integrative management of pain, availability of medications, education and research. Whilst advances have been made, including publication of the guidelines, significant gaps exist in terms of the evidence base, education and access to essential medications and both interdisciplinary and international collaboration are required to meet these gaps. PMID:25537696

Downing, Julia; Jassal, Satbir Singh; Mathews, Lulu; Brits, Hanneke; Friedrichsdorf, Stefan J

2015-01-01

135

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

136

A Measure of Palliative Care in Nursing Homes  

PubMed Central

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

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

2010-01-01

137

A Guide to Enteral Drug Administration in Palliative Care  

Microsoft Academic Search

Enteral feeding is indicated in patients unable to ingest sufficient nutrients but whose gastrointestinal function is adequate for digestion and absorption. Indications in palliative care include patients with radical esophageal surgery, upper gastrointestinal tract obstruction, anorexia, and dysphagia. As the oral route is the preferred method of palliative drug delivery, the enteral feeding tube can become an important tool for

Peter J Gilbar; Dip Hosp Clin Pharm Pract

1999-01-01

138

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

139

Designing Clinically Valuable Telehealth Resources: Processes to Develop a Community-Based Palliative Care Prototype  

PubMed Central

Background Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype. PMID:25189279

Morgan, Deidre Diane; Swetenham, Kate; To, Timothy Hong Man; Currow, David Christopher

2014-01-01

140

Department of Palliative Care, Policy & Rehabilitation School of Medicine at Guy's, King's College  

E-print Network

for People with Chronic Heart Failure: Translation of Heart Failure Study to Clinical Setting 25 5 Education in Patients with Chronic Heart Failure 7 2.1.6 Improving Care and Services in Primary Palliative Care 7 2 and Outreach 27 5.1 General Education: Seminars, Masterclasses and Targeted Programmes 27 5.2 MSc, Postgraduate

Kühn, Reimer

141

Experience with neonatal palliative care consultation at the Medical College of Wisconsin-Children's Hospital of Wisconsin.  

PubMed

At Children's Hospital of Wisconsin there is a pediatric palliative care consultation service that serves a diverse patient population, including infants. However, the value of a palliative care consultation for infants has not been well evaluated. We performed a retrospective, case series, descriptive chart review of infants in our neonatal intensive care unit (NICU) who received palliative care consults between January 1996 and June 1998. We specifically looked at their diagnoses, the timing of consults, reasons that consultations were ordered, what recommendations were made, and the subsequent outcomes. During the series period there were 898 admissions to the NICU, 51 neonatal deaths, and 12 neonatal palliative care consultations. The diagnostic categories for those with a palliative care referral included prematurity, lethal anomalies, and catastrophic or overwhelming illness. Reasons for the consultations were organization of home hospice, facilitation of medical options, such as do-not-resuscitate (DNR) orders and treatment withdrawal, facilitation of comfort measures, and grief/loss issues. Recommendations that the palliative care staff made fell into four categories: advance directive planning, the optimal environment for supporting neonatal death, comfort and medical care, and psychosocial support. This series is a description of what a palliative care service can offer for terminally ill infants in an NICU. We speculate that such consults can more consistently and comprehensively provide appropriate end-of-life care for these patients and their families. PMID:11291393

Leuthner, S R; Pierucci, R

2001-01-01

142

The interaction of medications used in palliative care.  

PubMed

Palliative care uses several classes of drugs, which are handled by the CYP P450 system. Interaction of drugs in this setting requires ongoing vigilance by the physician. Phenocopying may be more common than previously realized. PMID:12170573

Bernard, Stephen A

2002-06-01

143

[The current state, the possibilities and difficulties of palliative and hospice care in Hungary].  

PubMed

Hospice-palliative care has existed in Hungary for more than 20 years but physicians know very little about it. The objective of the study is to give detailed practical information about the possibilities and the reasonability of hospice care and the process of how to have access to it. The authors review and analyze the database of the national Hospice-Palliative Association database to provide most recent national data on hospice-palliative care. In addition, legal, financial and educational issues are also discussed. At present there are 90 active hospice providers in Hungary, which provide service for more than 8000 terminally ill cancer patients. According to WHO recommendations there would be a need for much more service providers, institutional supply and more beds. There are also problems concerning the attitude and, therefore, patients are admitted into hospice care too late. Hospice care is often confused with chronic or nursing care due to lack of information. The situation may be improved with proper forms of education such as palliative licence and compulsory, 40-hour palliative training for residents. The authors conclude that a broad dissemination of data may help to overcome misbeliefs concerning hospice and raise awareness concerning death and dying. PMID:25217766

Heged?s, Katalin; Lukács, Miklós; Schaffer, Judit; Csikós, Agnes

2014-09-21

144

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

145

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

146

Audit of referrals to a hospital palliative care team: role of the bilingual health-care worker.  

PubMed

There is much interest in whether the needs of ethnic minority patients are being met by palliative care services. Bradford has a population that includes people from several different ethnic minorities, the largest number of whom originate from Pakistan. In May 2000 a bilingual health-care worker (BHCW) was appointed to work with the local palliative care teams to improve service provision for patients from South Asia. An audit of referrals to Bradford teaching hospitals palliative care team from October 2001 to September 2002 looked at the role of the BHCW. It was found that the BHCW was involved in 41% of referrals from ethnic minorities. In addition to aiding communication, the BHCW also provided an important link between the community and the hospital for patients and had a role in bereavement and family support. This audit indicates the BHCW role can be successful and may be useful for other population groups. PMID:12968121

Ackroyd, Rajeena

2003-08-01

147

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. PMID:25624872

Gafer, Nahla; Elhaj, Ahmed

2014-01-01

148

Palliative care for cancer patients in Sudan: an overview.  

PubMed

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. PMID:25624872

Gafer, Nahla; Elhaj, Ahmed

2014-01-01

149

Research Priorities in Geriatric Palliative Care: Informal Caregiving  

PubMed Central

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

2013-01-01

150

Reflections on Palliative Care from the Jewish and Islamic Tradition  

PubMed Central

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

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

2012-01-01

151

Clinical supervision in the palliative care team setting: a concrete approach to team wellness.  

PubMed

Clinical supervision is a structured, case-based approach to learning that is used most often in the mental health field. An established palliative care consultation service at a large, academic medical center implemented a modified clinical supervision model in an effort to improve team members' awareness of their own emotions and the way those emotions impact behavior during, primarily, clinical encounters. This report discusses clinical supervision in detail and, by way of a case, illustrates the power of this intervention as a source of self-care and a concrete approach to managing palliative care team well-being. PMID:25517027

Edmonds, Kyle P; Yeung, Heidi N; Onderdonk, Christopher; Mitchell, William; Thornberry, Kathryn

2015-03-01

152

Palliative and end-of-life care in the global response to multidrug-resistant tuberculosis.  

PubMed

Multidrug-resistant (MDR) tuberculosis is costly, difficult to treat, and poses a global threat to tuberculosis control. The high burden of disease and treatment for patients, poor cure rates, and high mortality bring distress to patients, families, and caregivers. Despite guidance to improve treatment outcomes, little attention has been paid to palliative care of patients and families, such as for physical, psychosocial, social, and spiritual difficulties. An international expert symposium was convened to articulate an appropriate palliative care response for people with MDR tuberculosis. Several policies should be updated to ensure that palliative and end-of-life care is in place alongside treatment should cure be achieved, and to the end of life if not. Many services have been developed that exemplify integrated palliative care (ie, provided from within existing tuberculosis care). We recommend that existing expertise within palliative care can be used, which will improve management of problems such as dyspnoea, cachexia, and haemoptysis for patients across care settings, including at home, and enhance performance of control programmes. PMID:22691837

Harding, Richard; Foley, Kathleen M; Connor, Stephen R; Jaramillo, Ernesto

2012-08-01

153

The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic  

PubMed Central

BACKGROUND A multidisciplinary outpatient clinic at a tertiary care children’s hospital supported and staffed by a children’s hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program. PMID:20592973

Siden, Harold; Straatman, Lynn; Miller, Tanice; Ham, Jennifer

2009-01-01

154

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

155

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

PubMed

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

Malakoff, Marion

2006-01-01

156

The role and significance of nurses in managing transitions to palliative care: a qualitative study  

PubMed Central

Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. Design Qualitative study using semistructured interviews. Setting Two health services with public as well as private clinical environments in a major metropolitan area of Australia. Participants Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care. Results Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time. Conclusions The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care. PMID:25270859

Kirby, Emma; Broom, Alex; Good, Phillip

2014-01-01

157

IMhPaCT: an education strategy for cross-training palliative care and mental health clinicians.  

PubMed

The Australian Integrated Mental Health and Palliative Care Task (IMhPaCT) project aimed to improve the quality of palliative care for people with a severe and persistent mental illness and those who develop mental health issues as a response to their diagnosis of a life-limiting illness. These patients and families are generally cases of high complexity and require strong collaboration and cooperation across various service sectors. Education across both palliative care and mental health services was identified as a key objective in improving palliative care service delivery in this patient population. This article specifically addresses one aspect of the project-the education strategy. The processes of development, implementation, and evaluation of outcomes are discussed. PMID:22885902

Taylor, Janet; Swetenham, Kate; Myhill, Karin; Picot, Sharon; Glaetzer, Karen; Loon, Antonia van

2012-06-01

158

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

PubMed Central

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

Onyeka, Tonia C

2011-01-01

159

Developing targets for public health initiatives to improve palliative care  

PubMed Central

Background Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. Methods Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets). Results Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. Conclusions To systematically develop palliative care, it makes sense to define fields of action with individual targets. For Germany, it can be recommended to give priority to the targets that were highlighted as the most relevant in this study. The next step will be to develop, implement and evaluate tangible measures to achieve these targets. PMID:20429901

2010-01-01

160

Implementing patient reported outcome measures (PROMs) in palliative care - users' cry for help  

PubMed Central

Background Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures. Methods A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire. Results Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs. Conclusions Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care. PMID:21507232

2011-01-01

161

Family meetings in palliative care: Multidisciplinary clinical practice guidelines  

PubMed Central

Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined. PMID:18710576

Hudson, Peter; Quinn, Karen; O'Hanlon, Brendan; Aranda, Sanchia

2008-01-01

162

Measuring the diffusion of palliative care in long-term care facilities – a death census  

Microsoft Academic Search

BACKGROUND: The dissemination of palliative care for patients presenting complex chronic diseases at various stages has become an important matter of public health. A death census in Swiss long-term care facilities (LTC) was set up with the aim of monitoring the frequency of selected indicators of palliative care. METHODS: The survey covered 150 LTC facilities (105 nursing homes and 45

Sophie Paroz; Brigitte Santos-Eggimann

2009-01-01

163

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

164

A bedside food cart as an alternate food service for acute and palliative oncological patients  

Microsoft Academic Search

Patients with advanced cancer experience various problems with eating, and their meals should be tailored to meet their specific needs. Two methods of food service were compared in a shared acute oncology\\/palliative care unit; an electrical food cart allowing patients to select their food types and portions at the bedside, and a traditional food tray delivery service that relied on

Patti Pietersma; Sandra Follett-Bick; Brenda Wilkinson; Nancy Guebert; Kim Fisher; Jose Pereira

2003-01-01

165

Palliative Care for a Mentally Incompetent End Stage Renal Failure Patient: Why Is It Important?  

PubMed Central

People with intellectual disabilities are among the most disadvantaged groups in society. Here we report a mentally incompetent end stage renal failure (ESRF) patient with frequent emergency visits who made a significant improvement in symptoms control and reduction in casualty visits after introduction of renal palliative care service. Multidisciplinary approach would be useful in this case.

Chan, Kwok-Ying; Yip, Terence; Sham, Mau-Kwong; Cheng, Benjamin Hon-Wai; Li, Cho-Wing; Wong, Yim-Chi; Lau, Vikki Wai-Kee

2015-01-01

166

[Palliative Care Network - 20 years of experiences from Ticino / Southern Switzerland].  

PubMed

The PC program of the Italian speaking part of Switzerland (Ticino) has been developed bottom up since 1990. It was started with a palliative homecare service, called Hospice Ticino. Six years later PC consultant teams were introduced in the public hospitals. Finally in 2003 an acute palliative care unit was opened. Few resources are still lacking to ensure a comprehensive network, especially in the private clinics and in the elderly homes. Through the newly implemented National Strategy in PC 2010 - 12, the government of Canton Ticino has been charged with promoting a comprehensive, strategic and operative program in PC in order to guarantee access to high quality PC to every patient wherever he choses to be cared for. The article describes the history of Ticino's palliative care program, highlighting some of its controversial issues. PMID:22334205

Neuenschwander, Hans; Gamondi, Claudia

2012-02-01

167

Identifying Key Priorities for Future Palliative Care Research Using an Innovative Analytic Approach  

PubMed Central

Using an innovative approach, we identified research priorities in palliative care to guide future research initiatives. We searched 7databases (2005–2012) for review articles published on the topics of palliative and hospice–end-of-life care. The identified research recommendations (n = 648) fell into 2 distinct categories: (1) ways to improve methodological approaches and (2) specific topic areas in need of future study. The most commonly cited priority within the theme of methodological approaches was the need for enhanced rigor. Specific topics in need of future study included perspectives and needs of patients, relatives, and providers; underrepresented populations; decision-making; cost-effectiveness; provider education; spirituality; service use; and inter-disciplinary approaches to delivering palliative care. This review underscores the need for additional research on specific topics and methodologically rigorous research to inform health policy and practice. PMID:25393169

Riffin, Catherine; Pillemer, Karl; Chen, Emily K.; Warmington, Marcus; Adelman, Ronald D.; Reid, M. C.

2015-01-01

168

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

169

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

170

Integration of palliative care in chronic critical illness management.  

PubMed

Palliative care is an essential component of comprehensive care for all patients with chronic critical illness, including those receiving restorative or life-sustaining therapies. Core elements include alleviation of symptom distress, communication about care goals, alignment of treatment with the patient's values and preferences, transitional planning, and family support. Here we address strategies for assessment and management of symptoms, including pain, dyspnea, and depression, and for assisting patients to communicate while endotracheally intubated. We also discuss approaches to optimize communication among clinicians, patients, and families about care goals. Challenges for supporting families and planning for transitions between care settings are identified, while the value of interdisciplinary input is emphasized. We review "consultative" and "integrative" models for integrating palliative care and restorative critical care. Finally, we highlight key ethical issues that arise in the care of chronically critically ill patients and their families. PMID:22663973

Nelson, Judith E; Hope, Aluko A

2012-06-01

171

Alternative and Complementary Medicine Internet Resources for Palliative Care  

Microsoft Academic Search

Because of its focus, palliative care offers a fertile milieu in which to apply complementary or alternative therapies. Guided imagery, hypnosis, therapeutic touch, reflexology, acupuncture, massage, acupressure, music therapy, art therapy, aromatherapy, meditation, prayer, biofeedback, humor therapy, and Reiki are all examples of a wide range of complementary therapies used to provide comfort care and to better the quality of

Rhada J. Hartmann

2008-01-01

172

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

173

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

MedlinePLUS

... order to get palliative care. The palliative care team and your health care provider work together. Most clinicians appreciate the extra time and ... or any medications, talk to your palliative care team. They can tell you about how various medications work, what their side effects are and how to ...

174

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

PubMed Central

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

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

2015-01-01

175

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

176

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

PubMed

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

2011-05-01

177

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

178

Acute and critical care nurses' perceptions of palliative care competencies: a pilot study.  

PubMed

Competency development among acute and critical care nurses has focused primarily on the provision of life-sustaining care and less on the care of patients who fail to respond to life-prolonging treatments. Examining nurses' beliefs, perceptions, and experiences with patients' palliative care needs may improve continuing education programs, practice resources, educational curricula, and professional nursing practice. Survey methodology was used to conduct this pilot study. Forty-nine nurses completed a 33-item survey instrument in 2012. Respondents consisted of nurses attending a critical care continuing education event and graduate nursing students in an acute care nurse practitioner program. Statistical tests were used to examine differences in perceived importance of core competencies in palliative care. Findings from this study demonstrate variation in palliative care knowledge and perceived relative importance of core competencies needed in palliative care practice. This study provides preliminary data about knowledge differences among different nursing groups and a foundation for further study. PMID:24877548

White, Kenneth R; Roczen, Marisa L; Coyne, Patrick J; Wiencek, Clareen

2014-06-01

179

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

180

Feelings of rewards among family caregivers during ongoing palliative care.  

PubMed

Objectives: Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources. PMID:24128643

Henriksson, Anette; Carlander, Ida; Arestedt, Kristofer

2013-10-16

181

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. PMID:25624871

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

2014-01-01

182

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

183

[Role and missions of the French Society of Support and Palliative Care].  

PubMed

The French Society for Support and Palliative Care brings together professionals and volunteers working in the area of palliative care and signed up to its social project. It is a learned society which develops and passes on practices, knowledge and research. It is the mouthpiece for people concerned by and involved in palliative care and support. PMID:22003796

Lacour, Frédérique; Hérisson, Brigitte

2011-09-01

184

pediatric palliative care at boston college How do you meet the needs of  

E-print Network

(DHHS) under grant number D09HP07456 and title Advanced Education Nursing Grants. The information-limiting illnesses? As a pediatric palliative care nurse, you will deliver innovative nursing interventions and treat: Palliative Care and the Advanced Practice Nursing Role NU 647 Palliative Care III: Pediatric Practicum

Huang, Jianyu

185

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

186

Initiating palliative care conversations: lessons from Jewish bioethics.  

PubMed

What are the ethical responsibilities of the medical staff (doctors, nurses, social workers, and chaplains) regarding the preservation of meaningful life for their patients who are approaching the end of life (EOL)? In particular, what is the staff's ethical responsibility to initiate a conversation with their patient regarding palliative care? By subjecting traditional Jewish teachings to an ethical analysis and then exploring the underlying universal principles, we will suggest a general ethical duty to inform patients of the different care options, especially in a manner that preserves hope. The principle that we can derive from Jewish bioethics teaches that the medical staff has a responsibility to help our patients live in a way that is consistent with how they understand their task or responsibility in life. For some patients, the best way to preserve a meaningful life in which they can fulfill their sense of purpose in the time that remains is to focus on palliation. For this reason, although palliative and supportive care are provided from the time of diagnosis, it is critical we make sure our patients realize that they have the opportunity to make a decision between either pursuing additional active treatments or choosing to focus primarily on palliative therapies to maximize quality of life. The Jewish tradition and our experience in spiritual care suggest the importance of helping patients preserve hope while, simultaneously, honestly acknowledging their situation. Staff members can play a vital role in helping patients make the most of this new period of their lives. PMID:23089233

Schultz, Michael; Bar-Sela, Gil

2013-03-01

187

Pain, music creativity and music therapy in palliative care  

Microsoft Academic Search

An analysis of the music therapy literature yields numerous reports to support the role of music in the alleviation of pain in palliative care. Four theoretical perspectives that support why many patients report reduced pain sensation after music therapy include: the psychological relationship between music and pain; the psychophysiological theory; spinal mechanisms involved in pain modulation; and the role of

Clare C. O’Callaghan

1996-01-01

188

When Hospice Fails: The Limits of Palliative Care.  

ERIC Educational Resources Information Center

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

Logue, Barbara J.

1994-01-01

189

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

190

[The perception of time in a palliative care unit].  

PubMed

Time is perceived differently depending on whether it is experienced by the patient, his or her family, friends, volunteer helpers or caregivers. It also differs according to the institute. In palliative care, it is still a time of life, accompanied to its end. PMID:23167130

Tocheport, Pascale; Tambouras, Valérie; Azemard, Alain

2012-10-01

191

Management of delirium in palliative care: a review.  

PubMed

Delirium is a complex but common disorder in palliative care with a prevalence between 13 and 88 % but a particular frequency at the end of life (terminal delirium). By reviewing the most relevant studies (MEDLINE, EMBASE, PsycLit, PsycInfo, Cochrane Library), a correct assessment to make the diagnosis (e.g., DSM-5, delirium assessment tools), the identification of the possible etiological factors, and the application of multicomponent and integrated interventions were reported as the correct steps to effectively manage delirium in palliative care. In terms of medications, both conventional (e.g., haloperidol) and atypical antipsychotics (e.g., olanzapine, risperidone, quetiapine, aripiprazole) were shown to be equally effective in the treatment of delirium. No recommendation was possible in palliative care regarding the use of other drugs (e.g., ?-2 receptors agonists, psychostimulants, cholinesterase inhibitors, melatonergic drugs). Non-pharmacological interventions (e.g., behavioral and educational) were also shown to be important in the management of delirium. More research is necessary to clarify how to more thoroughly manage delirium in palliative care. PMID:25663153

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

2015-03-01

192

Psychiatric Issues in Palliative Care: Assessing Mental Capacity  

PubMed Central

Issues surrounding capacity to consent to or refuse treatment are increasingly receiving clinical and legal attention. Through the use of 3 case vignettes that involve different aspects of mental health care in palliative care settings, mental capacity issues are discussed. The vignettes tackle capacity in a patient with newly developed mental illness consequent to physical illness, capacity in a patient with mental illness but without delirium and capacity in a patient with known impairment of the mind. These discussions give credence to best practice position where physicians act in the best interests of their patients at all times. It is important to emphasize that capacity decisions have to be made on a case by case basis, within the remit of legal protection. This is a fundamental requirement of the Mental Capacity Act 2005, England & Wales (MCA). The later is used as the legal basis for these discussions. The psychiatric liaison service is a useful resource to provide consultation, advice and or joint assessment to clinicians encountering complex dilemmas involving decision-making capacity. PMID:25278761

Udo, Itoro; Mohammed, Zeid; Gash, Amanda

2013-01-01

193

Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations  

PubMed Central

Background People living in rural and remote locations are disadvantaged in accessing palliative care. This can be attributed to several factors including the role diversity and the low numbers of patients with specific conditions, as well as the difficulties rural health practitioners have in accessing opportunities for professional education. A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address this problem. Method The educational content of the video conferences was developed from participant responses to an educational needs assessment. Following cycles of four consecutive video conferences, 101 participants completed evaluative on-line surveys. The quantitative data were analysed using frequencies and analysis of variance tests with post-hoc analyses where appropriate, and an accessibility and remoteness index was used to classify their practice location. Results All participants found the content useful regardless of their remoteness from the tertiary centre, their years of experience caring for palliative care patients or the number of patients cared for each year. However, change in confidence to provide palliative care as a result of attending the video conferences was significant across all disciplines, regardless of location. Doctors, medical students and allied health professionals indicated the greatest change in confidence. Conclusions The provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas. However, more attention should be directed to the diverse educational needs of allied health professionals. PMID:24947941

2014-01-01

194

Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues  

PubMed Central

Background Out-of-hours general practitioners (GPs) cover the community over a significant proportion of a given week, and palliative care patients are seen as a priority. Little is known about how well these GPs feel supported in their line of work and whether communication exchanges work well for the proportion of their patients who have palliative care needs. For this study, GPs who provide out-of-hours care were interviewed in order to explore factors that they identified as detrimental or beneficial for good communication between themselves, patients, relatives and other professionals, specifically to palliative care encounters. Methods Nine GPs were interviewed using face-to-face semi-structured interviews. All nine GPs worked regular out-of-hours sessions. Data from transcripts was analysed using Interpretative Phenomenological Analysis. Results A predominant theme expressed by GPs related to constraints within the system provided by the local private company owned out-of-hours provider. A strong feeling of 'being alone out there' emerged, with some GPs more willing to call for help than others, and others expressing their concern at access to pharmacies and medication being very inconsistent. Out-of-hours GPs felt left alone on occasion, unable to access daytime services and not knowing who to call for advice. Information hand-over systems from in-hours to out-of-hours with regard to palliative care were felt to be inadequate. Out-of-hours doctors interviewed felt left out of the care loop; handover sheets from specialist palliative care providers were a rarity. Conclusions Out-of-hours services need to be mindful of the needs of the GPs they employ, in particular relating to the palliative care they provide in this setting. Other healthcare professionals should aim to keep their local out-of-hours service informed about palliative care patients they may be called to see. PMID:20704741

2010-01-01

195

Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences  

PubMed Central

Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews (n = 7 and n = 6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway. PMID:24372976

Davies, Nathan; Maio, Laura; Vedavanam, Krish; Manthorpe, Jill; Vernooij-Dassen, Myrra; Iliffe, Steve

2014-01-01

196

A review of paediatric palliative care nursing education in Latin America.  

PubMed

Around the world, children suffering from catastrophic illnesses need quality palliative nursing care. However, unstable economic, social, and political structures in developing nations have delayed the advancement of paediatric palliative care programs in some regions. This systematic literature review primarily focuses on paediatric palliative care in Latin American countries. The aim is to identify existing support structures and possible barriers to paediatric palliative care nursing education. This review provides the background for a proposed collaborative paediatric palliative care nursing education initiative between a children's research hospital in the United States and a Chilean partner site. PMID:19773701

Bishop, Kendra; Mele, Nancy; Koppmann, María José Errázuriz; Day, Sara

2009-08-01

197

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

PubMed Central

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

Fairman, Nathan

2013-01-01

198

[Assessment of the spiritual needs of patients in palliative care].  

PubMed

The appraisal and the right diagnostics of all needs and problems of patients, including the spiritual needs, are unavoidable for increase of the quality of the all-embracing nursing care. In the case of satisfying of the needs of the patients, it is important to have view the person as a unity of thebody and the soul. Identification and satisfying of the spiritual needs are not uncomplicated; moreover, spirituality does not have a target--ed and clear definition. In the palliative care, the solution and saturation of spiritual needs have a great priority, and it can be the key aspect of psychological activity. Also, medical experts are becoming aware of the meaning of spirituality as the part of psychological contentment more and more. Smaller importance is attached to measurement of spiritual needs, and in many medical institutions ends at the case history with the questions: "Are you a believer?", "Do you have any spiritual needs?". Spirituality and religion are very personal matters of every human. Many patients turn to religion to find answers to difficult questions while others find support through the spiritual beliefs outside the scope of organized religion. Mistaking of meanings of the spirituality and religionism can lead to many misunderstandings. The basic condition for the right diagnostics and satisfaction of spiritual needs are the definition of the used terms and using of standardized measurement devices in the clinical praxis. The target of summarizing study was to define the term of spirituality, to describe a lot of measurement devices these are suitable for the evaluation of human spiritual needs. For methodology for acquiring of the results of research works that are concerned with the questions of spiritual needs in case of the incurable patients, the following databases were used (2005-2013): EBSCO, Bibliographia Medica ?echoslovaca, Google Scholar, Solen - www.solen.cz, Profese on-line as the source of the data. The choice of studies were as follows the systematic overview, the summarizing essay, the qualitative and quantitative study.Key words: spirituality - religion - spiritual needs - palliative care The authors declare they have no potential conflicts of interest concerning drugs, products, or?services used in the study. The Editorial Board declares that the manuscript met the ICMJE "uniform requirements" for biomedical papers.Submitted: 16. 6. 2014Accepted: 27. 11. 2014. PMID:25692750

Hajnová Fukasová, E; Bužgová, R; Feltl, D

2015-01-01

199

Designing research with hospice and palliative care populations.  

PubMed

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

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

2012-08-01

200

Perspectives of an international education initiative in children's palliative care.  

PubMed

Education is viewed as central to improving future palliative care for children and families across all countries. International education initiatives will ensure practitioners are aware of global health issues and can provide culturally sensitive care. Creative and innovative means of meeting such directives are required to achieve meaningful student learning. This paper focuses on one innovation, a children's palliative care workshop using case studies as a teaching method, with nursing students from the USA and nursing and midwifery students from the UK. Key learning points arising from student evaluation were recorded under three main themes, these were: differences across countries, similarities across countries, and making learning fun and memorable. Findings indicated that this joint learning activity was viewed positively by all students and has enabled them to learn with and from each other, potentially impacting on their future practice. PMID:25426881

Price, Jayne; Janicki, Jacqueline S; McKee, Heather; Nurse, Sharon; Gray, Eileen

2014-11-01

201

Palliative care in Germany from a public health perspective: qualitative expert interviews  

PubMed Central

Background Improving palliative care is a public health priority. However, little is known about the views of public health experts regarding the state of palliative care in Germany and the challenges facing it. The main aim of this pilot study was to gather information on the views of internationally experienced public health experts with regard to selected palliative care issues, with the focus on Germany, and to compare their views with those of specialist palliative care experts. Qualitative guided interviews were performed with ten experts (five from palliative care, five from public health). The interviews were analysed using qualitative content analysis. Findings Older people and non-cancer patients were identified as target groups with a particular priority for palliative care. By contrast to the public health experts, the palliative care experts emphasized the need for rehabilitative measures for palliative patients and the possibilities of providing these. Significant barriers to the further establishment of palliative care were seen, amongst other things, in the powerful lobby groups and the federalism of the German health system. Conclusion The findings suggest that from the experts' point of view (1) palliative care should focus on the needs of older people particularly in view of the demographic changes; (2) more attention should be paid to rehabilitative measures in palliative care; (3) rivalries among different stakeholders regarding their responsibilities and the allocation of financial resources have to be overcome in Germany. PMID:19566946

Behmann, Mareike; Lückmann, Sara Lena; Schneider, Nils

2009-01-01

202

Equity of use of specialist palliative care by age: cross-sectional study of lung cancer patients.  

PubMed

The equitable provision of care is a core principle of the National Health Service. Previous research has suggested that older cancer patients may be less likely to use specialist palliative care, but such research has been limited by retrospective design and the failure to measure clinical need. The objective of this study was to examine the extent to which the use of specialist palliative care in lung cancer patients varies by age, after accounting for need. A cross-sectional survey of patients and their carers attending four hospital lung cancer clinics in London was conducted between June 2006 and April 2007. Two hundred and fifty-two patients and 137 carers participated in the study. Thirty-nine percent of participants received specialist palliative care. Metastatic disease, global quality of life and the clinic where treatment was provided were associated with use of specialist palliative care. Age, gender, deprivation, living alone, current or most recent line of treatment, number of co-morbidities and carer stress were not associated with receipt of such services. This suggests that, for patients within the specialist cancer care system, access to specialist palliative care is offered on the basis of need. PMID:20395355

Burt, Jenni; Plant, Hilary; Omar, Rumana; Raine, Rosalind

2010-09-01

203

National Hospice and Palliative Care Organization  

MedlinePLUS

... Caring Connections Clinical Topics Grief and Bereavement Hospice Manager Development Psychosocial/Spiritual Management and Leadership Volunteer and ... Quality Pediatric Care Webcasts Courses A-Z Hospice Manager Development Program 2015 MDP Courses Hospice Executive Leadership ...

204

Transitions to palliative care in acute hospitals in England: qualitative study  

Microsoft Academic Search

ObjectiveTo explore how transitions to a palliative care approach are perceived to be managed in acute hospital settings in England.DesignQualitative study.SettingSecondary or primary care settings in two contrasting areas of England.Participants58 health professionals involved in the provision of palliative care in secondary or primary care.ResultsParticipants identified that a structured transition to a palliative care approach of the type advocated in

Merryn Gott; Christine Ingleton; Michael I Bennett; Clare Gardiner

2011-01-01

205

Palliative care, Version 1.2014. Featured updates to the NCCN Guidelines.  

PubMed

The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. These NCCN Guidelines Insights summarize the NCCN panel's discussions and guideline updates from 2013 and 2014. These include modifications/additions to palliative care screening and assessment protocols, new considerations for discussing the benefits and risks of anticancer therapy, and approaches to advance care planning. Recent updates focus on enhanced patient-centered care and seek to promote earlier integration of palliative care and advance care planning in oncology. PMID:25313178

Levy, Michael H; Smith, Thomas; Alvarez-Perez, Amy; Back, Anthony; Baker, Justin N; Block, Susan; Codada, Shirley N; Dalal, Shalini; Dans, Maria; Kutner, Jean S; Kvale, Elizabeth; Misra, Sumathi; Mitchell, William; Sauer, Todd M; Spiegel, David; Sutton, Linda; Taylor, Robert M; Temel, Jennifer; Tickoo, Roma; Urba, Susan G; Van Zyl, Carin; Weinstein, Sharon M; Bergman, Mary Anne; Scavone, Jillian L

2014-10-01

206

The Sir Halley Stewart Trust Spiritual care in palliative care: recent European research and  

E-print Network

' and carers' spiritual needs & preferences regarding spiritual care Spiritual care in community and nursing home settings Professional training in spiritual care for healthcare staff The assessment of spiritual Teaching Hospitals, UK; Dr. Enric Benito Balearic Strategy of Palliative Care, ES; Prof. Carlo Leget

Kühn, Reimer

207

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

208

Psychiatric aspects of chronic palliative care: waiting for death.  

PubMed

This article emphasizes the shifting paradigm of palliative care from cancer patients to vital organ failure in chronic diseases. It offers a view about a type of palliative care for patients reaching the pre-terminal phase of a chronic illness. Unlike cancer patients, time is not as sharply delineated and physical pain is not a major factor, but psychological distress is often a major component of the clinical condition. Starting from the perspective of a psychiatric consultant on medical and surgical wards, I present short clinical vignettes to introduce a discussion about psychological manifestations in patients with chronic vital organ failure. The objective is to help patients find meaning to the last stage of their life. To that effect, four key sensitive areas are presented for clinicians to assess end-of-life coping: pressure on character organization, the management of hope, mourning problems, and ill health as a screen for psychological distress. PMID:22935080

Sirois, François

2012-09-01

209

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.

210

Home palliative care as a cost-saving alternative: evidence from Catalonia.  

PubMed

The aim of this study was to provide a comparative assessment of the health care resources consumed during the final month of life of patients undergoing palliative treatment and who died from cancer in the town of Mataró, Spain, in 1998, with respect to whether they benefited from home care teams or not. Relevant differences in the use of health care resources were found between the groups. Patients in the standard care group presented more hospital care admissions and longer length of stay, higher use of emergency and outpatient visits, and greater use of palliative care units within nursing homes than patients in the home care group. The monetary quantification of the use of the above-mentioned resources showed a 71% increase in the cost per patient in the standard care when compared to home care. According to the results of this study, home care teams for terminal cancer patients allow for savings to the health care system. A series of policy making and health services research implications are discussed. PMID:12054144

Serra-Prat, M; Gallo, P; Picaza, J M

2001-07-01

211

Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology  

Microsoft Academic Search

Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as refractory multifaceted symptoms, communication and decision making issues and the requirement for family support. The

Tiny Jaarsma; James M. Beattie; Mary Ryder; Frans H. Rutten; Theresa McDonagh; Paul Mohacsi; Scott A. Murray; Thomas Grodzicki; Ingrid Bergh; Marco Metra; Inger Ekman; Marcia Leventhal; Antonis Pitsis; Stefan D. Anker; Antonello Gavazzi; Piotr Ponikowski; Kenneth Dickstein; Etienne Delacretaz; Florian Strasser; John McMurray

212

Implementing a palliative care program in a newborn intensive care unit.  

PubMed

In the United States the majority of infants who die in the first 27 days end their lives in the neonatal intensive care unit (NICU). This article describes the implementation of a NICU-based team approach to providing end-of-life care to dying infants and their families. Timeline, activities, and resultant improvements in family care and staff support are described. Moral distress among nurses caring for dying infants is discussed. A case study, neonatal palliative care policy, palliative care pathway, and lactation suppression guidelines for mothers following infant death are presented. More research is needed to verify improvements in neonatal, family, and staff support with palliative care programs in the NICU. PMID:16458249

Gale, Gay; Brooks, Alison

2006-02-01

213

[Palliative care in pediatrics, ethics and relations with the patient].  

PubMed

The extension of the Belgian law on euthanasia to minors during the course of 2014 raises questions with regard to the needs of children in the context of paediatric palliative care. These needs concern essentially the focus given to the interrelations between the child, their family and the caregiving team as well as to the relief of the physical, psychological and spiritual pain. Ethical guidelines help to fuel the discussions surrounding professional practices. PMID:25608370

Friedel, Marie

2014-01-01

214

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

215

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

216

Reporting Characteristics of Cancer Pain: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals  

PubMed Central

Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model. PMID:21633623

Kumar, Senthil P

2011-01-01

217

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

218

Improving HIV management in sub-Saharan Africa: How much palliative care is needed?  

Microsoft Academic Search

The WHO advocates palliative care as an essential component of HIV care from the point of diagnosis (when the burden of pain and symptoms may be first experienced) to the end of life and into bereavement (World Health Organisation, 2006). However, in the field of African HIV care where mortality is high, palliative care has been shown to be largely

K. Collins; R. Harding

2007-01-01

219

The TLC Model of Palliative Care in the Elderly: Preliminary Application in the Assisted Living Setting  

PubMed Central

Substantial shortfalls in the quality of palliative care of the elderly can be attributed to 5 fundamental flaws in the way end-of-life care is currently delivered. First, palliative care is viewed as a terminal event rather than a longitudinal process, resulting in a reactive approach and unnecessary preterminal distress in elderly patients suffering from chronic, slowly progressive illnesses. Second, palliative care is defined in terms of a false dichotomy between symptomatic and disease-focused treatment, which distracts attention from the proper focus of healing illness. Third, the decision about whether the focus of care should be palliative is not negotiated among patients, family members, and providers. Fourth, patient autonomy in making treatment choices is accorded undue prominence relative to more salient patient choices, such as coming to terms with their place in the trajectory of chronic illness. Fifth, palliative care is a parallel system rather than an integrated primary care process. A new theoretical framework—the TLC model—addresses these flaws in the provision of palliative care for elderly persons. In this model, optimal palliative care is envisioned as timely and team oriented, longitudinal, collaborative and comprehensive. The model is informed by the chronic illness care, shared decision making, and comprehensive geriatric assessment research literature, as well as previous palliative care research. Preliminary results of an intervention for elderly assisted living residents based on the TLC model support its promise as a framework for optimizing palliative care of elders. PMID:15053284

Jerant, Anthony F.; Azari, Rahman S.; Nesbitt, Thomas S.; Meyers, Frederick J.

2004-01-01

220

[Nursing collaboration with palliative care volunteers in critical care medicine departments].  

PubMed

Palliative care remains associated with images of death and generates fears. It is difficult to envisage supporting patients at the end of life anywhere other than in specialised places. With situations of critical care, professionals and volunteers use their complementary skills to work together in caring for the patient. PMID:22003793

Héron, Myriam

2011-09-01

221

Who is the key worker in palliative home care?  

PubMed Central

Objective Palliative home care involves coordination of care between the professionals involved. The NICE guideline on supportive and palliative care (UK) recommends that teams, regardless of their base, should promote continuity for patients. This may involve nomination of a coordinating “key worker”. This study aimed to explore who acts as key worker and who ought to take on this role in the views of patients, relatives, and primary care professionals. Furthermore, it aimed to explore the level of agreement on this issue between study participants. Design Interview and questionnaire study. Setting Former County of Aarhus, Denmark (2008–2009). Subjects Ninety-six terminally ill cancer patients, their relatives, general practitioners (GPs), and community nurses (CNs). Main outcome measures Actual key worker as valued by patients, relatives, and primary care professionals; ideal key worker as valued by patients and relatives. Results Patients, relatives, GPs, and CNs most often saw themselves as having been the key worker. When asked about the ideal key worker, most patients (29%; 95%CI: 18;42) and relatives (32%; 95%CI: 22;45) pointed to the GP. Using patients’ views as reference, we found very limited agreement with relatives (47.7%; k = 0.05), with GPs (30.4%; k = 0.01) and with CNs (25.0%; k = 0.04). Agreement between patients and relatives on the identity of the ideal key worker was of a similar dimension (29.6%; k = 0.11). Conclusion Poor agreement between patients, relatives, and professionals on actual and ideal key worker emphasizes the need for matching expectations and clear communication about task distribution in palliative home care. PMID:21861601

Brogaard, Trine; Jensen, Anders Bonde; Sokolowski, Ineta; Olesen, Frede; Neergaard, Mette Asbjørn

2011-01-01

222

[Essential psychological care in palliative medicine].  

PubMed

Because of progress in cancer treatment, the development of cancer is not necessarily a death sentence. On the other hand, approximately half of patients actually die from cancer even today, and many cancer patients require care for psychological distress. From the viewpoint of psychiatric diagnosis, the most common psychiatric conditions experienced by cancer patients are adjustment disorders and/or major depression. From the viewpoint of psychological status, however, cancer patients without psychiatric disorders may still suffer from fears of recurrence during the survival period and psycho-existential distress or death denial during the terminally ill phase. Concerning psychological symptoms related to cancer treatment, anticipatory nausea and vomiting is a well-documented condition among patients receiving high doses of emetogenic chemotherapeutic agents. Thus, most cancer patients experience some form of psychiatric disorder and/or psychological distress and should receive appropriate management and care during the course of their illness. Mental health professionals are expected to play a role in managing patients' distress. In general, because cancer patients are more likely to prefer psychotherapeutic intervention to pharmacological therapy for the management of their distress, mental health professionals must rely on psychotherapeutic approaches. Thus, mental health professionals need to provide care for cancer patients based on an understanding of the course of disease. This review focuses on the psychological distress experienced by cancer patients and provides an overview of essential psychological care, focusing on psychological interventions for ameliorating the psychological distress of cancer patients. Furthermore, the novel system of registered psycho-oncologists established by the Japan Psycho-oncology Society to foster psycho-oncology professionals who can provide appropriate specialized care to cancer patients and/or their families is also introduced. PMID:21179667

Akechi, Tatsuo

2010-01-01

223

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

224

Palliative Care for Patients with Malignancy and End-Stage Renal Failure on Peritoneal Dialysis  

PubMed Central

Background: Many patients on peritoneal dialysis experience a poor quality of life because of a high burden of comorbid conditions. Dialysists must pay more attention to reducing a patient's pain and suffering, both physical and psychological and improve the quality of life for the patients as much as possible. A consensus regarding eligibility for palliative care and the delivery of these inventions does not currently exist. Objective: The present study aimed to describe the implementation of palliative care for end-stage renal failure patients on peritoneal dialysis. Design: A report on three cases. Materials and Methods: This study included three outpatients on peritoneal dialysis who received palliative care and died between January 2008 and June 2010. Measurements: The patients' comorbidities, nutritional status, and functional status were evaluated using the Charlson comorbidity score, subjective global assessment, and Karnofsky Performance Score index, respectively. The Hamilton depression and Hamilton anxiety scales were also employed. The patients' clinical manifestations and treatments were reviewed. Results: Each patient displayed 11-16 symptoms. The Charlson comorbidity scores were from 11 to 13, the subjective global assessment indicated that two patients were class assigned to “C” and one to class “B”, and the mean Karnofsky index was <40. Among these patients, all experienced depression and two experienced anxiety, Low doses of hypertonic glucose solutions, skin care, psychological services, and tranquillizers were intermittently used to alleviate symptoms, after making the decision to terminate dialysis. The patients died 5 days to 2 months after dialysis withdrawal. Conclusion: The considerable burden associated with comorbid conditions, malnutrition, poor functional status, and serious psychological problems are predictors of poor patient prognoses. Withdrawal of dialysis, palliative care, and psychological interventions can reduce patient distress and improve the quality of life before death, with the care provided. PMID:25125871

Jing, Lv; Wu-Jun, Xue; Feng, Tan

2014-01-01

225

Volunteers trained in palliative care at the hospital: An original and dynamic resource.  

PubMed

Objective: Volunteers trained in palliative care are increasingly present in acute care units in general hospitals. Nevertheless, there still are few available data on this topic, especially concerning the integration of volunteers outside the palliative structures. Our present study aimed to describe the experience of volunteers trained in palliative care in the context of a primary care hospital. In particular, the difficulties and the benefits of this specific position were evaluated according to volunteers' own perceptions and words. Method: We employed a qualitative method. Various aspects of the volunteer's role were explored by means of semistructured questions, addressing their activity, their motivations, and their feelings. Participants were volunteers (n = 19) trained in palliative care and working at a university hospital. After giving written consent, they completed the semistructured questionnaire at home. Content analysis was used to identify the main categories of answers and the principal themes reported by the volunteers. Results: The main difficulties were related to uncertainty of the context. As every situation is different, volunteers could not define their role once and for all. However, they derived great satisfaction from their activity. A supporting frame and a good balance between constraints and autonomy were facilitating factors. Besides, the complexity related to the context contributed to make the position valuable and challenging. Significance of results: Integrating a voluntary service in a primary care hospital is partly based on active participation of the volunteers in developing their position in a more adequate way. In return, this relative autonomy implies a rigorous and supportive attitude from the institution. PMID:24762324

Delaloye, Sylvette; Escher, Monica; Luthy, Christophe; Piguet, Valérie; Dayer, Pierre; Cedraschi, Christine

2014-04-24

226

Palliative care for patients with end-stage liver disease.  

PubMed

Liver disease results in over four million physician visits and over 750,000 hospitalizations per year in the USA. Those with chronic liver disease frequently progress to cirrhosis, end-stage liver disease (ESLD), and death. Patients with ESLD experience numerous complications, including muscle cramps, confusion (hepatic encephalopathy), protein calorie malnutrition, muscle wasting, fluid overload (ascites, edema), bleeding (esophagogastric variceal hemorrhage), infection (spontaneous bacterial peritonitis), fatigue, anxiety, and depression. Despite significant improvements in palliation of these complications, patients still suffer reduced quality of life and must confront the fact that their disease will often inexorably progress to death. Liver transplantation is a valid option in this setting, increasing the duration of survival and palliating many of the symptoms. However, many patients die waiting for an organ or are not candidates for transplantation due to comorbid illness. Others receive a transplant but succumb to complications of the transplant itself. Patients and families must struggle with simultaneously hoping for a cure while facing a life-threatening illness. Ideally, the combination of palliative care with life-sustaining therapy can maximize the patients' quality and quantity of life. If it becomes clear that life-sustaining therapy is no longer an option, these patients are then already in a system to help them with end-of-life care. PMID:25855211

Larson, Anne M

2015-05-01

227

Spirituality, religion, and healing in palliative care.  

PubMed

In end-of-life care, attending to spiritual needs ensures that a dying patient has the opportunity to find meaning in the midst of suffering and to have the opportunity for love, compassion, and partnership in their final journey. This article summarizes some of the beliefs and traditions from Judaism, Islam, and Christianity that affect people as they face their own dying and mortality. People who do not participate in any formal religion also have a drive to find meaning in the midst of suffering and dying. They may find this in personal ways. This article presents some practical tools to help clinicians address and respect spiritual and religious issues of patients. It is crucial that our culture and our systems of care for the dying include a spiritual approach so that dying can be meaningful and even filled with hope. PMID:15541620

Puchalski, Christina M; Dorff, Rabbi Elliot; Hendi, Imam Yahya

2004-11-01

228

Dignity and palliative care in dementia.  

PubMed

Care for patients with dementia poses multiple challenges to the caretaker, including issues concerning maintaining patient dignity. In this paper, we discuss dignity in the context of patient autonomy, self-respect and appreciation, and explore issues that relate to dignity of patients in dementia care. As patients become incapacitated by the disease, it becomes the caretaker's responsibility to assure that the patient continues to live with dignity. The uniform manifestation of dementia symptoms across individuals allows for implementation of patient-friendly activities to address their special needs and allow them to express the remaining autonomy. In advanced dementia, a beneficial long-term care outcome becomes secondary and should give way to strategies to maintain patient comfort and dignity. Although it may be challenging to stress dignity in a patient with advanced dementia, where multiple serious health problems are likely to co-exist, it remains important to realize that dignity can be, should be and must be supported, maintained and, in some situations, regained. PMID:17985065

Holmerová, I; Jurasková, B; Kalvach, Z; Rohanová, E; Rokosová, M; Vanková, H

2007-01-01

229

Ethical dilemmas in palliative care in traditional developing societies, with special reference to the Indian setting  

Microsoft Academic Search

Background:There are intriguing and challenging ethical dilemmas in the practice of palliative care in a traditional developing society.Objective:To review the different ethical issues involved in cancer and palliative care in developing countries, with special reference to India.Methods:Published literature on pain relief and palliative care in the developing countries was reviewed to identify ethical issues and dilemmas related to these, and

S K Chaturvedi

2008-01-01

230

preliminary Report of a pilot Tele-Health palliative care and Bioethics program for Residents in skilled nursing Facilities  

Microsoft Academic Search

Currently about 25% of Americans die in nursing homes, many with poorly controlled pain and other symptoms, with minimal provisions for psychosocial support. New models are necessary to lessen structural and process barriers to give effective end-of-life care in nursing homes. Objectives: 1) To extend hospital-based Bioethics Consultation Services (BCS) and Palliative Care Services (PCS) at Montefiore Medical Center (MMC)

Tia Powell

2009-01-01

231

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

PubMed

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

Johnstone, Megan-Jane

2012-12-01

232

[Models of communication to integrate early palliative care in thoracic oncology].  

PubMed

The recent development in optimising palliative care standards in thoracic oncology is associated with an increased demand in specialized communication skills. Standardised and integrated assessments of the palliative care need of the patient is met by limited health care resources. The model of communication described in this article emphasizes the need to structure palliative distress assessment of the patient. Communication pathways are shown as a platform to evaluate and support patient and caregivers. Standards to establish algorithms of communication in palliative care will improve the very important interaction between patient and caregivers. PMID:25668607

Tessmer, G; Tessmer, A; Kurz, S; Blankenburg, K; Grohé, C

2015-02-01

233

Clinical aspects of palliative care in advanced Parkinson’s disease  

PubMed Central

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

2012-01-01

234

The RAI-PC: An assessment instrument for palliative care in all settings  

Microsoft Academic Search

Large numbers of persons in most types of healthcare settings have palliative care needs that have considerable impact on their quality of life. Therefore, InterRAI, a multinational consortium of researchers, clinicians, and regulators that uses assessment systems to improve the care of elderly and disabled persons, designed a standardized assessment tool, the Resident Assessment Instrument for Palliative Care (RAI-PC). The

K. Steel; G. Ljunggren; E. Topinková; J. N. Morris; C. Vitale; J. Parzuchowski; S. Nonemaker; D. H. Frijters; T. Rabinowitz; K. M. Murphy; M. W. Ribbe; B. E. Fries

2003-01-01

235

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

ERIC Educational Resources Information Center

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

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

2008-01-01

236

Educational opportunities in palliative care: what do general practitioners want?  

PubMed

It is important to support general practitioners (GPs) in maintaining and developing their palliative care skills as most of the final year of a patient's life is spent at home under the care of the primary health care team. The training needs and uptake of GPs have been explored, but little is known about how GP educational preferences vary. The aim of this study was to explore the current educational preferences of GPs in different geographical locations as part of an evaluation of an educational intervention. The methods used included postal questionnaires sent to 1061 GPs. Results from 640 (60%) of GPs revealed that half (51%) wanted education in symptom control for non-cancer patients. More inner-city GPs wanted education in opiate prescribing (43%), controlling nausea and vomiting (45%), and using a syringe driver (38%) than their urban and rural colleagues (26%, 29% and 21%, respectively). Increased educational preference and increased difficulty in accessing information was associated with reduced confidence in symptom control. To maximize educational uptake it will be important for educational strategies to be developed and targeted according to variations in demand, and in particular to respond to the need for palliative care education in symptom control for patients suffering from advanced non-malignant disease. PMID:11407190

Shipman, C; Addington-Hall, J; Barclay, S; Briggs, J; Cox, I; Daniels, L; Millar, D

2001-05-01

237

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

238

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

PubMed Central

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

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

2008-01-01

239

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

240

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

241

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

242

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. PMID:25628893

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

2015-01-01

243

Is there a model for demonstrating a beneficial financial impact of initiating a palliative care program by an existing hospice program?  

PubMed

The value of integrating palliative with curative modes of care earlier in the course of disease for people with life threatening illnesses is well recognized. Whereas the now outdated model of waiting for people to be actively dying before initiating palliative care has been clearly discredited on clinical grounds, how a better integration of modes of care can be achieved, financed and sustained is an ongoing challenge for the health care system in general as well as for specific institutions. When the initiative comes from a hospital or academic medical center, which may, for example, begin a palliative care consultation service, financial benefits have been well documented. These palliative care services survive mainly by tracking cost savings that can be realized in a number of ways around a medical center. We tried to pilot 3 simple models of potential cost savings afforded to hospice by initiating a palliative care program. We found that simple models cannot capture this benefit (if it in fact exists). By adding palliative care, hospice, while no doubt improving and streamlining care, is also taking on more complex patients (higher drug costs, shorter length of stay, more outpatient, emergency room and physician visits). Indeed, the hospice was absorbing the losses associated with having the palliative care program. We suggest that an avenue for future exploration is whether partnering between hospitals and hospice programs can defray some of the costs incurred by the palliative care program (that might otherwise be passed on to hospice) in anticipation of cost savings. We end with a series of questions: Are there financial benefits? Can they be modeled and quantified? Is this a dilemma for hospice programs wanting to improve the quality of care but who are not able on their own to finance it? PMID:16594406

Passik, Steven D; Ruggles, Carol; Brown, Gretchen; Snapp, Janet; Swinford, Susan; Gutgsell, Terrence; Kirsh, Kenneth L

2004-12-01

244

A comparison of palliative care outcome measures used to assess the quality of palliative care provided in long-term care facilities: a systematic review.  

PubMed

Provision of palliative care in long-term care (LTC) facilities is important, but limited research has been undertaken to investigate the most appropriate outcome measure for use in this setting. In this systematic review we aimed to measure the psychometric properties (reliability/validity) and feasibility of palliative outcome measures used to assess the quality of palliative care provided in LTC. For identification of outcome measures we undertook systematic searches of electronic databases from 1 January 2000 to 12 September 2008. Included studies were assessed by two independent reviewers for methodological quality prior to inclusion in the review using an appraisal checklist developed for the review to evaluate validity, reliability and feasibility. Ten articles were included in the final review and these provided specific information on the psychometric properties of 10 outcome measures. Four of these measures reported data specifically for residents in LTC facilities, while the remaining six measures reported a sub-set of data for residents in LTC facilities. The Family Perceptions of Care Scale is considered by the authors as the most suitable outcome measure for use in LTC facilities. Of the remaining nine measures, a further two were also considered suitable for measuring the quality of palliative care in residential aged care facilities. These are the Quality of Dying in Long-term Care scale and the Toolkit Interview. PMID:20817748

Parker, Deborah; Hodgkinson, Brent

2011-01-01

245

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

246

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

247

Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study  

PubMed Central

Background In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries. Methods and design Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. Conclusion Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care. PMID:23394401

2013-01-01

248

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

249

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

MedlinePLUS

... Palliative Care: Increasing the quality of life for patients and families… Past Issues / Spring 2014 Table of ... hesitate to recommend palliative care for their youngest patients, and parents and caregivers are often unaware of ...

250

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

251

Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer  

Cancer.gov

Patients with advanced lung cancer who received early palliative care experienced longer median survival than those who only received palliative care near death, according to results of a randomized clinical trial published August 19, 2010, in the New England Journal of Medicine.

252

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

253

Department of Palliative Care, Policy & Rehabilitation, School of Medicine at Guy's, King's College  

E-print Network

Report 2008-2011 #12;i CONTENTS 1 Highlights 3 2 Research 5 2.1 Living and Dying in Society 6 In Focus 12 Palliative Care in Neurology 12 In Focus - A trial of a new model of short term palliative care and Support in Kenya and Uganda 15 2.3 Symptom-led Research 16 Breathlessness 16 In Focus - Cochrane Review

Kühn, Reimer

254

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

255

Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology  

Microsoft Academic Search

Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a\\u000acomparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care\\u000aneeds, such as refractory multifaceted symptoms, communication and decision making issues and the requirement for family support. The

T. Jaarsma; J. M. Beattie; M. Ryder; F. H. Rutten; T. McDonagh; P. Mohasci; S. A. Murray; T. Grodzicki; I. Bergh; M. Metra; I. Ekman; C. E. Angermann; M. Leventhal; A. Pitsis; S. D. Anker; A. Gavazzi; P. Ponikowski; K. Dickstein; E. Delacretaz; L. Blue; F. Strasser; J. J. McMurray

2009-01-01

256

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

257

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

258

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

259

Factors predicting the effectiveness of palliative care in patients with advanced cancer.  

PubMed

Objective: The purpose of this study was to assess the factors that predict the effectiveness of palliative care in patients with advanced cancer. Method: Cross-sectional data were collected from 240 patients recruited from three tertiary care hospitals in Bangkok and suburban Thailand aged 18 years or older who were willing to participate; able to speak, read, and write Thai; were not receiving aggressive cancer treatment; and had been diagnosed with advanced-stage cancer. Participants were asked to complete a Personal Information Questionnaire (PIQ), a Palliative Care Assessment Form (PCAF), and the Spiritual Well-Being Scale (SWBS). Results: The significant predictors of the effectiveness of palliative care in patients with advanced cancer were found to be spiritual well-being (p = 0.000) and palliative care strategies: a combination of pharmacological and psychosocial care, mind-body intervention, and spiritual care; physical management; and traditional medicine, herbal treatment, and diet management (p = 0.027). The likelihood of effectiveness for patients whose spiritual well-being and palliative care strategies scores increased by an average of one point increased by factors of 1.058 and 2.271, respectively. Significance of Results: These findings suggest that patients who experienced better spiritual well-being and who employed a variety of palliative care strategies also experienced enhanced effectiveness of palliative care. PMID:25090913

Chaiviboontham, Suchira

2014-08-01

260

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

PubMed Central

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

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

2013-01-01

261

Pediatric Nurses' Individual and Group Assessments of Palliative, End-of-Life, and Bereavement Care  

PubMed Central

Abstract Background Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. Objective To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. Method A cross-sectional survey of nurses at a freestanding children's hospital in 2005. Results Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. Conclusions Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs. PMID:21476885

Tubbs-Cooley, Heather L.; Santucci, Gina; Kang, Tammy I.; Feinstein, James A.; Hexem, Kari R.

2011-01-01

262

Care of the Terminally Ill from Religious Perspectives: Role of Palliative and Hospice Care  

PubMed Central

Health care should make an attempt to understand the different religious principles that affect end-of-life decisions in patient care. With advanced illness, defining an ethical framework is essential to understanding sensitive issues. Compassionate care is crucial in all end-of-life care settings. Physician awareness is a key principle in inculcating the religious values of patients. Cultural and religious awareness on the part of the health-care team is needed to provide patients with effective end-of-life palliative and hospice care. PMID:23610503

Mir, Tanveer

2012-01-01

263

Palliative critical care in the intensive care unit: A 2011 perspective  

PubMed Central

Pain relief and palliative care play an increasingly important role in the overall approach to critically ill and injured patients. Despite significant progress in clinical patient care, our understanding of death and the dying process remains limited. For various reasons, people tend to delay facing questions associated with end-of-life, and the fear of the unknown often creates an environment of avoidance and an atmosphere of taboo. The topic of end-of-life care is multifaceted. It incorporates medical, ethical, spiritual, and religious aspects, among many others. Our ability to sustain the lives of the critically ill may be complicated by continuing life support in medically futile scenarios. This article, as well as the remainder of the IJCIIS Symposium on End-of-Life in Trauma/Intensive Care Unit, will explore the most important issues in the field of modern end-of-life care and palliative medicine, with a focus on critically ill and injured patients. PMID:22229140

Adolph, Michael D; Frier, Kimberly A; Stawicki, Stanislaw PA; Gerlach, Anthony T; Papadimos, Thomas J

2011-01-01

264

Effectiveness of eHealth Interventions and Information Needs in Palliative Care: A Systematic Literature Review  

PubMed Central

Background One of the key components in palliative care is communication. eHealth technologies can be an effective way to support communications among participants in the process of palliative care. However, it is unclear to what extent information technology has been established in this field. Objective Our goal was to systematically identify studies and analyze the effectiveness of eHealth interventions in palliative care and the information needs of people involved in the palliative care process. Methods We conducted a systematic literature search using PubMed, Embase, and LILACS according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We collected and analyzed quantitative and qualitative data regarding effectiveness of eHealth interventions and users’ information needs in palliative care. Results Our search returned a total of 240 articles, 17 of which met our inclusion criteria. We found no randomized controlled trial studying the effects of eHealth interventions in palliative care. Studies tended to be observational, noncontrolled studies, and a few quasi-experimental studies. Overall there was great heterogeneity in the types of interventions and outcome assessments; some studies reported some improvement on quality of care, documentation effort, cost, and communications. The most frequently reported information need concerned pain management. Conclusions There is limited evidence around the effectiveness of eHealth interventions for palliative care patients, caregivers, and health care professionals. Focused research on information needs and high-quality clinical trials to assess their effectiveness are needed. PMID:24610324

Ganzinger, Matthias; Perez-Lu, Jose; Knaup, Petra

2014-01-01

265

Palliative care nursing: Ensuring competent care at the end of life  

Microsoft Academic Search

Major advances in enabling function and symptom management have occurred in the past decade. Older adults who would have been bed-bound at the end of life now can be offered interventions to help them live well until they die. People who once would have suffered from pain can expect to be kept comfortable with aggressive symptom management. Palliative care nursing

Marianne L. Matzo; Deborah Witt Sherman

2001-01-01

266

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

267

[Hospice Palliative Care is a Universal Value and the Essence of Nursing].  

PubMed

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

Chao, Co-Shi Chantal

2015-04-01

268

Use of amniotic membrane in bullous keratopathy palliative care  

PubMed Central

Background: Assessment of efficiency of amniotic membrane covering in the improvement of bullous keratopathy symptoms. Material and method: The paper represents a clinical prospective study, which includes 42 patients diagnosed with bullous keratopathy and operated between January 2009 and November 2013 in the Department of Clinical Ophthalmology from “Dr. Carol Davila” Central Military Emergency Hospital. Follow up between 6 and 48 months, with an average of 22 months. Subject to research: corneal re-epithelisation, epithelial bullae, pain and photophobia relapse. Results: In 37 cases, the symptoms improved, in 8 cases the minimum symptoms persisted and in 29 cases the symptoms completely disappeared. In 5 cases, there were no significant improvements, symptoms reappeared briefly after membrane resorption. Conclusions: Amniotic membrane covering represents an efficient palliative care means in oedematous keratopathy.

Stefaniu, GI; Chiotoroiu, SM; Secureanu, FA; Purcarea, VL; Zemba, M

2014-01-01

269

The use of palliative care to promote autonomy in decision making.  

PubMed

This article explores barriers to informed decision making in health care, and it proposes palliative care as one means of responding to the challenge of a widespread lack of autonomy in decision making. Through an exploration of research in the fields of autonomy and palliative care, the advantages of informed decision making and advance care planning by patients with advanced illness are discussed, and the implications for clinical practice and patient outcomes are described. Continuity, collaboration, and communication have a synergistic effect on autonomy. The expectation that the palliative care team will be in constant communication with the attending physician, nurses, and other specialists also promotes autonomous decision making. Patients who receive palliative care may have multiple advantages, including increased survival, improved quality of life, and opportunities for the exercise of autonomy. PMID:25427706

Zalonis, Ruth; Slota, Margaret

2014-12-01

270

Palliative Care Needs of Patients With Cancer Living in the Community  

PubMed Central

Purpose: With improved effectiveness of early detection and treatment, many patients with cancer are now living with advanced disease and associated symptoms. As cancer becomes a chronic illness, adequate attention to patients' symptoms and psychosocial needs in the community setting requires positioning of palliative care alongside cancer care. This article describes the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice. Methods: This secondary analysis used quality-monitoring data collected in three community-based palliative care organizations. Analyses focused on people with cancer-related diagnoses who were receiving palliative care during 2008 to 2011. Results: The analytic data set included 4,980 people, 10% of whom had cancer. Median age was 71 years. Forty-eight percent had been hospitalized at least once in the 6 months before palliative care referral. Forty-nine percent had a Palliative Performance Score (PPS) of 40% to 60%; 40% had PPS ? 30%. Although 81% had an estimated prognosis of ? 6 months, 58% were expected to live weeks to months. Thirty-three percent had no identified healthcare surrogate; 59% had no do-not-resuscitate order despite declining functional status and limited prognosis. Ninety-five percent reported ? 1 symptom, and 67% reported ? 3 symptoms; a substantial proportion did not receive treatment for symptoms. Conclusions: Patients referred to community-based palliative care experience multiple often-severe symptoms that have been insufficiently addressed. They tend to have declining performance status. Earlier palliative care intervention could improve outcomes but will require delivery models that better coordinate inpatient/outpatient oncology and community-based palliative care. PMID:22379422

Kamal, Arif H.; Bull, Janet; Kavalieratos, Dio; Taylor, Donald H.; Downey, William; Abernethy, Amy P.

2011-01-01

271

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

PubMed Central

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

272

Early palliative care in advanced lung cancer: a qualitative study.  

PubMed

BACKGROUND Early ambulatory palliative care (PC) is an emerging practice, and its key elements have not been defined. We conducted a qualitative analysis of data from a randomized controlled trial that demonstrated improved quality of life, mood, and survival in patients with newly diagnosed metastatic non-small cell lung cancer who received early PC integrated with standard oncologic care vs standard oncologic care alone. Our objectives were to (1) identify key elements of early PC clinic visits, (2) explore the timing of key elements, and (3) compare the content of PC and oncologic visit notes at the critical time points of clinical deterioration and radiographic disease progression. METHODS We randomly selected 20 patients who received early PC and survived within 4 periods: less than 3 months (n = 5), 3 to 6 months (n = 5), 6 to 12 months (n = 5), and 12 to 24 months (n = 5). We performed content analysis on PC and oncologic visit notes from the electronic health records of these patients. RESULTS Addressing symptoms and coping were the most prevalent components of the PC clinic visits. Initial visits focused on building relationships and rapport with patients and their families and on illness understanding, including prognostic awareness. Discussions about resuscitation preferences and hospice predominantly occurred during later visits. Comparing PC and oncologic care visits around critical time points, both included discussions about symptoms and illness status; however, PC visits emphasized psychosocial elements, such as coping, whereas oncologic care visits focused on cancer treatment and management of medical complications. CONCLUSIONS Early PC clinic visits emphasize managing symptoms, strengthening coping, and cultivating illness understanding and prognostic awareness in a responsive and time-sensitive model. During critical clinical time points, PC and oncologic care visits have distinct features that suggest a key role for PC involvement and enable oncologists to focus on cancer treatment and managing medical complications. PMID:23358690

Yoong, Jaclyn; Park, Elyse R; Greer, Joseph A; Jackson, Vicki A; Gallagher, Emily R; Pirl, William F; Back, Anthony L; Temel, Jennifer S

2013-02-25

273

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

274

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

PubMed

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

Yang, Y Tony; Mahon, Margaret M

2012-11-01

275

Use of Epidural and Peripheral Nerve Blocks at End of Life in Children and Young Adults with Cancer: The Collaboration between a Pain Service and a Palliative Care Service  

PubMed Central

Background Clinicians may avoid continuous pain blocks in pediatric cancer patients at the end of life for fear of complications or of interfering with the desired location of death. Objectives To examine the impact of epidural or peripheral nerve catheters on pain control in children and young adults with cancer within the last three months of life. Methods We retrospectively reviewed the medical records to assess pain scores, systemic opioid requirements, and impact on death at the preferred location. Results Ten patients (4.4 to 21.3 years of age), 9 with solid tumors, 1 with lymphoma, had 14 devices (11 epidural, 3 peripheral nerve catheters) for a range of 3 to 81 days. Twelve of 13 catheters provided improvement by at least one of three criteria: improved mean pain scores at 24 hours (8 of 13) and decreased opioid requirement at 24 hours in 9 cases and at day 5 in 9 cases. Eight patients died in their preferred setting. Six patients had catheters (5 epidural, 1 peripheral) until death, including 2 who died at home. In some cases, typical contraindications for indwelling catheters (spinal metastasis, vertebral fracture, thrombocytopenia, fever) were superseded by palliative care needs. We found no bleeding, infectious, or neurological complications. Conclusions Our findings suggest that continuous catheter-delivered pain blockade at the end of life contributes to analgesia, moderates opioid requirements, and usually does not preclude death at the preferred location. PMID:21199115

Anghelescu, Doralina L.; Faughnan, Lane G.; Baker, Justin N.; Yang, Jie; Kane, Javier R.

2015-01-01

276

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

277

A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol  

PubMed Central

Background Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report palliative needs in a screening, will benefit from being referred to ‘early SPC’. Methods/Design DanPaCT is a clinical, multicentre, parallel-group superiority trial with balanced randomisation (1:1). The planned sample size is 300 patients. Patients are randomised to specialised palliative care (SPC) plus standard treatment versus standard treatment. Consecutive patients from oncology departments are screened for palliative needs with a questionnaire if they: a) have metastatic cancer; b) are 18 years or above; and c) have no prior contact with SPC. Patients with palliative needs (i.e. symptoms/problems exceeding a certain threshold) according to the questionnaire are eligible. The primary outcome is the change in the patients’ primary need (the most severe symptom/problem measured with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Secondary outcomes are other symptoms/problems (EORTC QLQ-C30), satisfaction with health care (FAMCARE P-16), anxiety and depression (the Hospital Anxiety and Depression scale), survival, and health care costs. Discussion Only few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based ‘early SPC’ for patients with a broad spectrum of cancer diagnosis. Trial registration Current controlled Trials NCT01348048 PMID:24152880

2013-01-01

278

Effectively training the hospice and palliative medicine physician workforce for improved end-of-life health care in the United States.  

PubMed

The widening gap between the demand for palliative care services and the supply of trained palliative care professionals has resulted in considerable end-of-life distress for patients. Without formal training in palliative medicine and end-of-life symptom management, physicians in the United States are less equipped to competently address seriously ill and dying patients' medical, emotional, and spiritual needs. Recent attempts within graduate medical education training deliberately seek to prepare a critical mass of physicians as the new hospice and palliative medicine workforce in the United States. In addition, healthcare reform proposals may re-define the National Health Service Corps (NHSC) post-graduate training over the next five years and the Hospice Medicare Benefit altogether. Healthcare policy options include steady changes at multiple levels of medical training -namely, medical school curriculum mandates, requiring all graduate physician residency training to foster patient-centered communication skills and discussions about advanced directives, and instituting palliative medicine proficiency Continuing Medical Education (CME) requirements for all states' medical licensing boards. Attracting qualified physicians to serve patients at the end of life, innovative medical school loan repayment programs and scholarships will also foster excellence in the field of hospice and palliative medicine. Correcting our current paucity of formal training in palliative medicine better utilizes hospice and restores patients' dignity at the end of life. PMID:22174315

Bui, Thomas

2012-09-01

279

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 ...

280

Prevalence and risk factors of depressive symptoms in a Canadian palliative home care population: a cross-sectional study  

PubMed Central

Background Depression in palliative care patients is important because of its intrinsic burden and association with elevated physical symptoms, reduced immunity and increased mortality risk. Identifying risk factors associated with depression can enable clinicians to more readily diagnose it, which is important since depression is treatable. The purpose of this cross-sectional study was to determine the prevalence of depressive symptoms and risk factors associated with them in a large sample of palliative home care patients. Methods The data come from interRAI Palliative Care assessments completed between 2006 and 2012. The sample (n?=?5144) consists of adults residing in Ontario (Canada), receiving home care services, classified as palliative, and not experiencing significant cognitive impairment. Logistic regression identified the risk factors associated with depressive symptoms. The dependent variable was the Depression Rating Scale (DRS) and the independent variables were functional indicators from the interRAI assessment and other variables identified in the literature. We examined the results of the complete case and multiple imputation analyses, and found them to be similar. Results The prevalence of depressive symptoms was 9.8%. The risk factors associated with depressive symptoms were (pooled estimates, multiple imputation): low life satisfaction (OR?=?3.01 [CI?=?2.37-3.82]), severe and moderate sleep disorders (2.56 [2.05-3.19] and 1.56 [1.18-2.06]), health instability (2.12 [1.42-3.18]), caregiver distress 2.01 [1.62-2.51]), daily pain (1.73 [1.35-2.22]), cognitive impairment (1.45 [1.13-1.87]), being female (1.37 [1.11-1.68]), and gastrointestinal symptoms (1.27 [1.03-1.55]). Life satisfaction mediated the effect of prognostic awareness on depressive symptoms. Conclusions The prevalence of depressive symptoms in our study was close to the median of 10-20% reported in the palliative care literature, suggesting they are present but by no means inevitable in palliative patients. Most of the factors associated with depressive symptoms in our study are amenable to clinical intervention and often targeted in palliative care programs. Designing interventions to address them can be challenging, however, requiring careful attention to patient preferences, the spectrum of comorbid conditions they face, and their social supports. Life satisfaction was one of the strongest factors associated with depressive symptoms in our study, and is likely to be among the most challenging to address. PMID:24636452

2014-01-01

281

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

282

Radiofrequency ablation in palliative supportive care: early clinical experience.  

PubMed

We report our early experience with radiofrequency ablation (RFA) in palliative supportive care. The medical files of eight patients were retrospectively reviewed. Four patients had a renal tumor, and nephrectomy was contraindicated in each patient since they had a poor general status. The fifth patient had a local recurrence in the site of a previous nephrectomy with a pancreatic tail extension, and surgical resection was contraindicated because of abdominal carcinomatosis. Two other patients had bone metastasis, one with a painful metastasis of mammary carcinoma in the head of the humerus resistant to radiotherapy, and the other with metastasis of the tibia of cutaneous melanoma. The last patient had a local recurrence of a sacral chordoma. Management, outcomes and complications were evaluated with 13.1+/-0.3 months follow-up. All five patients with renal carcinomas did not have local recurrence. The two patients treated for bone metastases had no pain 8 weeks after RFA and remained stable over time. One complication occurred 2 months after using the procedure to treat the chordoma, and this patient was hospitalized for a fistula between the sigmoid and hypogastric artery false aneurysm and subsequently died. In conclusion, RFA can be a safe and useful adjuvant treatment in supportive care or unresponsive cancer pain patients. However, the destruction of tumoral tissues in contact with sensitive structures using RFA should be done with caution due to potentially severe complications. PMID:16391875

Marchal, Frédéric; Brunaud, Laurent; Bazin, Christophe; Boccacini, Hervé; Henrot, Philippe; Troufleau, Philippe; Krakowski, Ivan; Regent, Denis

2006-02-01

283

Psychosocial screening and assessment in oncology and palliative care settings  

PubMed Central

Psychiatric and psychosocial disorders among cancer patients have been reported as a major consequence of the disease and treatment. The problems in applying a pure psychiatric approach have determined the need for structuring more defined methods, including screening for distress and emotional symptoms and a more specific psychosocial assessment, to warrant proper care to cancer patients with psychosocial problems. This review examines some of the most significant issues related to these two steps, screening and assessment of psychosocial morbidity in cancer and palliative care. With regard to this, the many different variables, such as the factors affecting individual vulnerability (e.g., life events, chronic stress and allostatic load, well-being, and health attitudes) and the psychosocial correlates of medical disease (e.g., psychiatric disturbances, psychological symptoms, illness behavior, and quality of life) which are possibly implicated not only in “classical” psychiatric disorders but more broadly in psychosocial suffering. Multidimensional tools [e.g., and specific psychosocially oriented interview (e.g., the Diagnostic Criteria for Psychosomatic Research)] represent a way to screen for and assess emotional distress, anxiety and depression, maladaptive coping, dysfunctional attachment, as well as other significant psychosocial dimensions secondary to cancer, such as demoralization and health anxiety. Cross-cultural issues, such as language, ethnicity, race, and religion, are also discussed as possible factors influencing the patients and families perception of illness, coping mechanisms, psychological response to a cancer diagnosis. PMID:25709584

Grassi, Luigi; Caruso, Rosangela; Sabato, Silvana; Massarenti, Sara; Nanni, Maria G.; the UniFe Psychiatry Working Group Coauthors

2014-01-01

284

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

MedlinePLUS

... symptoms, and provide important emotional support to the child and family throughout the course of an illness. It is called palliative care, and it is a central part of treatment. Find Out More American ...

285

Knowledge and attitude of final - year medical students in Germany towards palliative care - an interinstitutional questionnaire-based study  

PubMed Central

Background To care for terminally ill and dying patients requires a thorough medical education, encompassing skills, knowledge, and attitudes in the field of palliative care. Undergraduate medical students in Germany will receive mandatory teaching in palliative care in the near future driven by recent changes in the Medical Licensure Act. Before new curricula can be implemented, the knowledge of medical students with respect to palliative care, their confidence to handle palliative care situations correctly, their therapeutic attitude, and their subjective assessment about previous teaching practices have to be better understood. Method We designed a composite, three-step questionnaire (self estimation of confidence, knowledge questions, and opinion on the actual and future medical curriculum) conducted online of final - year medical students at two universities in Germany. Results From a total of 318 enrolled students, 101 responded and described limited confidence in dealing with specific palliative care issues, except for pain therapy. With regard to questions examining their knowledge base in palliative care, only one third of the students (33%) answered more than half of the questions correctly. Only a small percentage of students stated they had gained sufficient knowledge and experience in palliative care during their studies, and the vast majority supported the introduction of palliative care as a mandatory part of the undergraduate curriculum. Conclusion This study identifies medical students' limited confidence and knowledge base in palliative care in 2 German universities, and underlines the importance of providing a mandatory palliative care curriculum. PMID:22112146

2011-01-01

286

Social Work Competencies in Palliative and End-of-Life Care  

Microsoft Academic Search

Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed

Lisa P. Gwyther; Terry Altilio; Susan Blacker; Grace Christ; Ellen L. Csikai; Nancy Hooyman; Betty Kramer; Julie M. Linton; Mary Raymer; Judith Howe

2005-01-01

287

What are motives of family members who take responsibility in palliative cancer care?  

Microsoft Academic Search

Background and aim.?Some studies show that the family members willingly take great responsibility in palliative care. However, their motives for doing so have not been much explored and the aim of this study is to investigate that further.Method.?Twenty family members of patients enrolled in palliative care were interviewed in depth. The interviews were taped, transcribed and analysed using a qualitative,

Lisa Sand; Mariann Olsson; Peter Strang

2010-01-01

288

A Timely Referral to Palliative Care Team Improves Quality of Life  

PubMed Central

In the trajectory of disease progress and treatment plan, patients and the family members are confronted with challenging situations like unsurmountable physical distress, inadequate coping patterns, unanswered spiritual issues in the background of serious threat to very existence of life leads to a debilitating Quality of life.The Palliative Care team approach addresses all the issues and also sees the patient to go through the protocols of Palliative care management as well as Oncological treatment plan. Further, this fecilitates a smooth transition from the hospital to home and hospice care. Various studies conducted globally revealed that patients received palliative care intervention along with oncological treatments had higher scores of Quality of life compared to patients received onlyoncology care alone.This article discusses the various factors contributing to late referrals to palliative care team and also care giver’s views pertaining to need for early referral. Timely referral to palliative care minimises the patient’s and care giver’s distress, ensures modest Quality of life and appropriate measures at the end of life care. PMID:21811360

Devi, P Saraswathi

2011-01-01

289

Estimates of the Need for Palliative Care Consultation across United States Intensive Care Units Using a Trigger-based Model  

PubMed Central

Rationale: Use of triggers for palliative care consultation has been advocated in intensive care units (ICUs) to ensure appropriate specialist involvement for patients at high risk of unmet palliative care needs. The volume of patients meeting these triggers, and thus the potential workload for providers, is unknown. Objectives: To estimate the prevalence of ICU admissions who met criteria for palliative care consultation using different sets of triggers. Methods: Retrospective cohort study of ICU admissions from Project IMPACT for 2001–2008. We assessed the prevalence of ICU admissions meeting one or more primary palliative care triggers, and prevalence meeting any of multiple sets of triggers. Measurements and Main Results: Overall, 53,124 (13.8%) ICU admissions met one or more primary triggers for palliative care consultation. Variation in prevalence was minimal across different types of units (mean 13.3% in medical ICUs to 15.8% in trauma/burn ICUs; P = 0.41) and individual units (mean 13.8%, median 13.0%, interquartile range, 10.2–16.5%). A comprehensive model combining multiple sets of triggers identified a total of 75,923 (19.7%) ICU admissions requiring palliative care consultation; of them, 85.4% were captured by five triggers: (1) ICU admission after hospital stay greater than or equal to 10 days, (2) multisystem organ failure greater than or equal to three systems, (3) stage IV malignancy, (4) status post cardiac arrest, and (5) intracerebral hemorrhage requiring mechanical ventilation. Conclusions: Approximately one in seven ICU admissions met triggers for palliative care consultation using a single set of triggers, with an upper estimate of one in five patients using multiple sets of triggers; these estimates were consistent across different types of ICUs and individual units. These results may inform staffing requirements for providers to ensure delivery of specialized palliative care to ICU patients nationally. PMID:24261961

Li, Guohua; Blinderman, Craig D.; Wunsch, Hannah

2014-01-01

290

Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care  

PubMed Central

Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals. PMID:23997951

Cook, Karen; Jack, Susan; Thabane, Lehana; Browne, Gina

2013-01-01

291

Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature.  

PubMed

Improvement in treatment has led to decreased death in youth with human immunodeficiency virus (HIV) in developed countries. Despite this, youth with HIV are still at risk for increased mortality and morbidity compared with their uninfected counterparts. In developing countries, high numbers of youth die from acquired immune deficiency syndrome (AIDS)-related illnesses due to lack of access to consistent antiretroviral treatment. As a result, pediatric palliative care is a relevant topic for those providing care to youth with HIV. A systematic review was conducted to gather information regarding the status of the literature related to pediatric palliative care and medical decision-making for youth with HIV. The relevant literature published between January 2002 and June 2012 was identified through searches conducted using PubMed, CINAHL, Scopus, and PSYCInfo databases and a series of key words. Articles were reviewed by thematic analysis using the pillars of palliative care set out by the National Consensus Project. Twenty-one articles were retained after review and are summarized by theme. In general, few empirically based studies evaluating palliative care and medical decision-making in youth with HIV were identified. Articles identified focused primarily on physical aspects of care, with less attention paid to psychological, social, ethical, and cultural aspects of care. We recommend that future research focuses on broadening the evaluation of pediatric palliative care among youth with HIV by directly evaluating the psychological, social, ethical, and cultural aspects of care and investigating the needs of all involved stakeholders. PMID:23930080

Wilkins, Megan L; Dallas, Ronald H; Fanone, Kathleen E; Lyon, Maureen E

2013-01-01

292

Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial  

PubMed Central

Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815 PMID:22050863

2011-01-01

293

A 4-year integrated curriculum in palliative care for medical undergraduates.  

PubMed

In order to graduate physicians prepared to effectively address clinical issues in palliative medicine and to comply with LCME requirements, the Northeastern Ohio Universities Colleges of Medicine and Pharmacy (NEOUCOM) integrated a coordinated four-year palliative care (PC) curriculum. This report describes the development of the longitudinal curriculum and provides helpful resources and strategies to guide clinicians and administrators undertaking similar efforts. This is a retrospective, descriptive report based on data collected throughout development of the new curriculum. A Palliative Care Advisory Committee initiated development of curricula in PC. An Office of Palliative Care was established to assess and coordinate offerings. Curriculum transformation was based on best practices. Two cornerstone pieces are highlighted: a mandatory hospice experience and a case based small group discussion prior to graduation. PMID:21518705

Radwany, Steven M; Stovsky, Erica J; Frate, Dean M; Dieter, Kevin; Friebert, Sarah; Palmisano, Barbara; Sanders, Margaret

2011-12-01

294

Perception of Iranian nurses regarding ethics-based palliative care in cancer patients  

PubMed Central

Palliative care is still a topic under discussion in the Iranian healthcare system, and cancer patients require palliative care. Moreover, nursing ethics has an important role in caring for these patients. The purpose of this study was to identify the perception of Iranian nurses regarding ethics-based palliative care in cancer patients. This study was done with a qualitative approach and by using content analysis. In this study, 14 nurses were selected through purposive sampling, and a face-to-face semi structured interview was conducted with each of them. After data collection, all interviews were transcribed and reviewed, and categories were extracted. At first, similarities in meaning were reviewed and based on centralization arranged in sub-categories. Then, relevant sub-categories were arranged in a category after a second review. In general, original categories in the ethics-based palliative care in cancer patients encompass the following: “human dignity”, “professional truthfulness” and “altruism”. Human dignity has 3 sub-categories consisting of ‘respecting patients’, ‘paying attention to patient values’ and ‘empathizing’. Professional truthfulness has 2 sub-categories consisting of ‘truthful speech’ and ‘truthful action’. Lastly, altruism has 3 sub-categories consisting of ‘complete and multi-dimensional patient acceptance’, ‘supportive behavior’ and ‘responsibility’. Content analysis of ethics-based palliative care in cancer patients revealed the required conditions for this type of care based on the perception of nurses. The results of this study suggest that in nurses’ point of view, human dignity, professional truthfulness and altruism all have important roles in ethics-based palliative care in cancer. The findings of this study will give nurses a greater knowledge about ethics-based palliative care in cancer patients, leading to a better understanding of the ethical needs of these patients, and may ultimately help improve the nursing practice. PMID:24427489

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

2013-01-01

295

[Qualitative analysis of palliative care and support in medical practices in DRC].  

PubMed

This work aims at documenting the representations that health professionals in Kinshasa have of palliative care and end-of-life support. This qualitative study was conducted among 30 doctors and 90 nurses with at least one year of experience in six hospitals in Kinshasa that receive patients at the end of life. The results show that health professionals believe that this care is time-consuming and that the inability to say some things to patients and families generates misunderstandings and concerns likely to prevent the application of palliative care. For them, it is often a futile therapeutic obstinacy, added hygienic care, and neglect of the patient. The obstacles to implementing this care might be linked to the lack of training about this approach and a health system based essentially on curative approaches. The representation of health professionals about palliative care and support are many and varied. They are, however, more structured among physicians than nurses. PMID:24686531

Lofandjola Masumbuku, J; Coppieters, Y

2014-01-01

296

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

297

Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias  

PubMed Central

Background: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. Aim: To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents’ experiences of advance care planning (ACP). Design: We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service’s clinical database. Setting: Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N?=?519) or had died 6–10?months previously having received care from the service (Group B; N?=?73). Results: Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p?palliative care studies. PMID:25519146

Crocker, Joanna C; Beecham, Emma; Kelly, Paula; Dinsdale, Andrew P; Hemsley, June; Jones, Louise

2015-01-01

298

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

PubMed Central

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

299

A Survey of the Use of Complementary and Alternative Medicine in Illinois Hospice and Palliative Care Organizations.  

PubMed

This research assesses complementary and alternative medicine (CAM) use and administration for patients and family caregivers in Illinois hospice and palliative care organizations. An online survey was administered to a sample of 108 contacts of Illinois organizations listed in the National Hospice and Palliative Care Organization website, and 90.3% of the responding organizations offered some type of CAM. The top 5 most frequently offered CAM modalities to patients were pet therapy (64.5%), music therapy (61.3%), massage therapy (54.8%), art therapy (29.0%), and energy therapies (25.8%); these were the same top 5 offered to families but with different frequencies. Findings regarding utilization, administration, financing, and spiritual/cultural competency are discussed with policy recommendations for data collection, administrative improvements, and integration of CAM providers into service delivery. PMID:23943631

Van Hyfte, Gregory J; Kozak, Leila E; Lepore, Michael

2013-08-12

300

Perinatal and Pediatric Issues in Palliative and End-of-Life Care from the 2011 Summit on Compassionate Care  

PubMed Central

More than 25,000 infants and children die in US hospitals annually; 86% occur in the NICU or PICU. Parents see the child’s pain and suffering and, near the point of death, must decide whether to resuscitate, limit medical treatment and/or withdraw life support. Immediately after the death parents must decide whether to see and/or hold the infant/child, donate organs, agree to an autopsy, make funeral arrangements, and somehow maintain functioning. Few children and their families receive pediatric palliative care services, especially those from minority groups. Barriers to these programs include lack of services, difficulty identifying the dying point, discomfort in withholding or withdrawing treatments, communication problems, conflicts in care among providers and between parents and providers, and differences in cultural beliefs about end-of-life care. The 2011 NIH Summit on the Science of Compassion provided recommendations in family involvement, end-of-life care, communication, health care delivery, and transdisciplinary participation. PMID:23036690

Youngblut, JoAnne M.; Brooten, Dorothy

2012-01-01

301

Examining the Effects of an Outpatient Palliative Care Consultation on Symptom Burden, Depression, and Quality of Life in Patients With Symptomatic Heart Failure  

PubMed Central

Background We conducted this prospective comparative study to examine the feasibility and effectiveness of a palliative care consultation along with standard heart failure care in an outpatient setting regarding symptom burden, depression, and quality of life (QOL). Methods and Results Thirty-six patients (53.6 ± 8.3 years old) were referred for an outpatient palliative care consultation after discharge. Changes in symptom burden, depression, and QOL at 3 months were compared with 36 patients with symptomatic heart failure matched on age, sex, race, and New York Heart Association functional class. Improvements were observed in symptom burden, depression, and QOL in both groups over time (all P <.005), but were more pronounced in patients receiving a palliative care consultation (all P <.035). Conclusions A palliative care consultation may reduce symptom burden and depression and enhance QOL in patients with symptomatic heart failure. Larger-scale randomized controlled trials sufficiently powered to assess clinical outcomes are warranted to determine the efficacy of palliative care services in outpatient settings regarding symptom distress, depression, and QOL in patients with symptomatic heart failure. PMID:23207076

EVANGELISTA, LORRAINE S.; LOMBARDO, DAWN; MALIK, SHAISTA; BALLARD-HERNANDEZ, JENNIFER; MOTIE, MARJAN; LIAO, SOLOMON

2014-01-01

302

Annual Midwest Regional Palliative Care Conference Thursday, April 16, 2015  

E-print Network

(registration required) A. A Natural Death..is it Possible Any More?, Sean Marks, MD B. Factitious Disorders. Multiculturalism at End-Of-Life, Allyn Swan, M.Div. MAR B. Skin Issues in the Palliative Patient, Barbara Wilson

303

[The role of neonatal nursing in palliative care of the newborn].  

PubMed

Nursing dying newborns is an inherent part of working in a neonatal intensive care (NICU). Holistic care involves recognizing the physical, emotional and spiritual needs of the dying infant and the family. The present article aims to explore how nurses can provide the best practices in neonatal palliative care. Palliative care is composed of three components: assistance with end-of-life decision making; pain and comfort management, and bereavement support with cultural competence. These issues have implications for improving nursing practice. PMID:17683690

Herranz-Rubia, Nuria

2007-01-01

304

Mandatory Palliative Care Education for Surgical Residents: Initial Focus on Teaching Pain Management  

PubMed Central

Background Knowledge concerning palliative care and the associated skills, including effective pain control, is essential for surgeons who treat cancer patients in daily practice. This study focuses on a palliative care training course that has been mandatorily conducted for all surgical residents of our hospital since 2009. Methods We evaluated the effectiveness of our mandatory palliative care training course by conducting a retrospective study of the patients' medical records and participants' questionnaire results and discussed the importance of palliative care education for surgical residents. Results All 12 surgical residents who participated in the course in 2009 had graduated 4–9 years back. They were assigned to look after a total of 92 cases (average, 7.66 cases per resident) during the course. The purpose of care in most cases (92.3%) was to mitigate pain. Introducing analgesic adjuvants such as gabapentin or amitriptyline accounted for the largest part of initial interventions (23.9%) aimed at controlling cancer pain, followed by changes in route of administration or doses of prior opioid analgesics (21.7%). Interventions with opioid analgesics were conducted most frequently (47.7%). The overall pain improvement rate was 89.1%. We used a questionnaire after the course to evaluate its effectiveness. Conclusions The surgical residents stated that it was a meaningful course through which they gained practical knowledge on palliative care and that the experience would change their approach to home care. PMID:23275645

Oya, Hisaharu; Matoba, Motohiro; Murakami, Satoshi; Ohshiro, Taihei; Kishino, Takayoshi; Satoh, Yuya; Tsukahara, Tetsuo; Hori, Syutarou; Maeda, Masahiro; Makino, Takashi; Maeda, Takashi

2013-01-01

305

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

306

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

307

Cannabis in palliative medicine: improving care and reducing opioid-related morbidity.  

PubMed

Unlike hospice, long-term drug safety is an important issue in palliative medicine. Opioids may produce significant morbidity. Cannabis is a safer alternative with broad applicability for palliative care. Yet the Drug Enforcement Agency (DEA) classifies cannabis as Schedule I (dangerous, without medical uses). Dronabinol, a Schedule III prescription drug, is 100% tetrahydrocannabinol (THC), the most psychoactive ingredient in cannabis. Cannabis contains 20% THC or less but has other therapeutic cannabinoids, all working together to produce therapeutic effects. As palliative medicine grows, so does the need to reclassify cannabis. This article provides an evidence-based overview and comparison of cannabis and opioids. Using this foundation, an argument is made for reclassifying cannabis in the context of improving palliative care and reducing opioid-related morbidity. PMID:21444324

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

2011-08-01

308

Palliative medicine in Britain.  

PubMed

In Britain, Palliative Medicine was recognized as a subspecialty of Internal Medicine exactly 20 years after Cicely Saunders founded St Christopher's, at exactly the same time that government was at last recognizing the worth and the needs of general practice. Both had far-reaching effects and implications for patients, doctors, and the future of medicine. For Palliative Medicine it meant units wishing to train specialists going through a rigorous selection process; the development of an equally rigorous training program for the doctors who had already gained a higher qualification before starting Palliative Medicine, demonstrating the need for and benefits of palliative medicine to the sceptics in the profession and, now, continuing to recruit the staff for the steadily increasing number of new services. Today there are more Palliative Medicine consultants/specialists than there are oncologists and neurologists combined, with Hospital Palliative Care Teams in every major hospital and cancer center. With nine Chairs in Palliative Medicine, there is now a drive for research and professional education. The specialty faces major challenges, however, ranging from training to care for patients with non-malignant disease to enabling patients to die in the place of their choice-something that rarely happens today; from defining what is distinctive or unique about palliative medicine to clarifying the respective place of general practice and the specialty. Most would agree that the biggest challenge for the young, thriving specialty is how to share its principles with other doctors wherever they work. PMID:18051021

Doyle, Derek

309

[Specialised Out-patient Palliative Care (SAPV) in Bavaria: Efficiency, Structural and Process-Related Effects and Rural Care.  

PubMed

Empirical indications show that specialised out-patient palliative care (SAPV), introduced in Germany in 2007, allows critically ill and dying patients to pass away within their own home even under complex symptoms. SAPV avoids emergency and hospital interferences, and the patient's wish to stay at home until the very end can be respected in most cases. The performance of SAPV is not solely focused on medical and patient-care aspects. It includes consulting and coordination work and also psycho-social support both of patients and family members. Within this framework, different active factors could be identified that are essential for high-quality care. Furthermore, the results show that the general ambulant care commodities on site determine the need, the extent and even the efficiency of SAPV. At the same time, SAPV changes also the respective care environment: it changes the roles of previous care providers and offers new resources, though not all existing resources (e.?g., hospice services) are taken into account. PMID:25137307

Schneider, W; Eichner, E; Thoms, U; Stadelbacher, S; Kopitzsch, F

2014-08-19

310

Holding on to what you have got: keeping hospice palliative care volunteers volunteering.  

PubMed

In all, 119 hospice palliative care volunteers from 3 community-based hospice programs completed the Volunteer Retention Questionnaire (VRQ), a 33-item survey designed for this study. The VRQ asks volunteers to rate the importance of each item to their decision to continue volunteering. The items that received the highest mean importance ratings included enjoying the work they do, feeling adequately prepared/trained to perform their role, and learning from their patients' experiences/listening to their patients' life stories. Being recognized (eg, pins for years of service or being profiled in the hospice newsletter), receiving phone calls/cards from their volunteer coordinator on special occasions, and being reimbursed for out-of-pocket expenses were among the items that received the lowest mean importance ratings. Suggestions for improving volunteer retention are provided. PMID:22811213

Claxton-Oldfield, Stephen; Jones, Richard

2013-08-01

311

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

312

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

313

Is There Evidence That Palliative Care Teams Alter End-of-Life Experiences of Patients and Their Caregivers?  

Microsoft Academic Search

Palliative care provision varies widely, and the effectiveness of palliative and hospice care teams (PCHCT) is unproven. To determine the effect of PCHCT, 10 electronic databases (to 2000), 4 relevant journals, associated reference lists, and the grey literature were searched. All PCHCT evaluations were included. Anecdotal and case reports were excluded. Forty-four studies evaluated PCHCT provision. Teams were home care

Irene J Higginson; Ilora G Finlay; Danielle M Goodwin; Kerry Hood; Adrian G. K Edwards; Alison Cook; Hannah-Rose Douglas; Charles E Normand

2003-01-01

314

What challenges good palliative care provision out-of-hours? A qualitative interview study of out-of-hours general practitioners  

Microsoft Academic Search

BackgroundNot much is known about how general practitioners (GPs) who work regular out-of-hours shifts in the community feel about prescribing medication for symptom control in end-of-life care patients, how they gain palliative care experience and what they perceive as benefits and hindrances within service delivery to this vulnerable patient and carer group.ObjectivesTo determine, by interviewing GPs who provide out-of-hours care,

Mark Taubert; Simon I R Noble; Annmarie Nelson

2011-01-01

315

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

316

Challenges to participation in paediatric palliative care research: a review of the literature.  

PubMed

It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team. PMID:17901103

Tomlinson, Deborah; Bartels, Ute; Hendershot, Eleanor; Constantin, Julie; Wrathall, Glynis; Sung, Lillian

2007-07-01

317

Quebec proposition of Medical Aid in Dying: a palliative care perspective.  

PubMed

The government of Quebec (Canada) is poised to adopt a proposition to legalize euthanasia in the form of "Medical Aid in Dying," which presents a new option for end-of-life care. This proposition arouses concerns among palliative care providers. The aim of this article is to provide a palliative care perspective on Quebec's proposition to legalize euthanasia. Based on the epistemological and methodological framework of critical theory, the following three questions are raised: First, in Quebec's current state of the law, is it possible to relieve the suffering of end-of-life patients? Second, can the Quebec proposition to legalize euthanasia in specific circumstances be harmful? Third, is the Quebec proposition on euthanasia compatible with palliative care and social values? In conclusion, recommendations and alternatives to the current Quebec proposition are suggested. PMID:24125960

Vachon, Mélanie

2013-01-01

318

Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis  

Microsoft Academic Search

Objectives  We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various\\u000a sources of information, including terminal cancer patients, their families, physicians, and nurses.\\u000a \\u000a \\u000a \\u000a Materials and methods  There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative\\u000a care and acute care cancer settings from five regional

Mitsunori Miyashita; Kei Hirai; Tatsuya Morita; Makiko Sanjo; Yosuke Uchitomi

2008-01-01

319

Development of a set of process and structure indicators for palliative care: the Europall project  

PubMed Central

Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs. PMID:23122255

2012-01-01

320

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

321

Implementing a quality improvement programme in palliative care in care homes: a qualitative study  

PubMed Central

Background An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care. Methods Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole. Results Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death. Conclusions Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions. PMID:21658253

2011-01-01

322

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

323

Mediating conflict and control: practice challenges for nurses working in palliative care  

Microsoft Academic Search

A work-based professional development program was offered to a group of registered nurses working in palliative care. The goal of the program was to improve skills in psychosocial care (Yates et al., 1996). Participants were encouraged to reflect critically on their practice experience within a group setting. The focus of the group discussion and reflection were shared practice incidents. Each

Gail Hart; Patsy Yates; Michael Clinton; Carol Windsor

1998-01-01

324

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

ERIC Educational Resources Information Center

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…

Howe, Judith L.; Sherman, Deborah Witt

2006-01-01

325

Ethical issues arising from the requirement to provide written information in palliative care  

E-print Network

1 Ethical issues arising from the requirement to provide written information in palliative care Plu.1177/0269216306073699 #12;2 Abstract French Healthcare Networks aim to help healthcare workers to take care of patients when they enter a Healthcare Network. Ethical problems arise from this legislation with regard

Paris-Sud XI, Université de

326

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

327

Bed care for patients in palliative settings: considering risks to caregivers and bed surfaces.  

PubMed

Ensuring patients are comfortable in bed is key to effective palliative care, but when moving and positioning patients in bed, health professionals face an occupational risk of injury. The turning and positioning (TAP) system is a new method of moving patients in bed, that evidence has shown to reduce the risk of injury to caregivers. Providing the correct bed surface is another aspect of bed care essential to the comfort of the palliative patient, and to aid wound prevention and treatment. It is important to take a patient-centred approach when considering the most appropriate bed surface patients. This article provides an overview and discussion of these two aspects of bed care for palliative patients. PMID:25715161

Fragala, Guy

2015-02-01

328

[Severe hypoplastic left heart syndrome: palliative care after prenatal diagnosis].  

PubMed

We analyzed 16 cases of hypoplastic left heart syndrome (HLHS) submitted to the multidisciplinary center at Rennes Teaching Hospital from 2006 to 2010 for prenatal diagnosis. The information given to parents at the moment of choice is capital for them to make their own decision: in our team the real choice for parents stands between termination of pregnancy (TOP) and palliative care (PC). The Norwood procedure is rarely proposed to parents in France and it is performed in very few centers. Heart transplant is never proposed nor done at this age. The objectives of our study were to understand the reasons for the choice of PC, take stock of our experience of PC, and relate the benefits but also the disadvantages of PC. Over the 16 patients whose fetus had HLHS, 9 requested TOP, while 7 others wanted to live their pregnancy and meet their child at birth, therefore requesting neonatal PC. No family asked for the Norwood procedure. Four children died within the first days (D1, D2, D4, D9), 2 others died at 5 and 7 months, 1 child was operated on for coarctation of the aorta (unknown before birth) and is still alive 1.5 years later. Maternal motivations to continue the pregnancy were clearly described for 2 of the 7 cases: religious prohibition of TOP in 1 case, negative experiences of previous abortions in the second case. In another case, the parents hesitated between PC and Norwood surgery. For the other women, the reasons were less clearly expressed. In our series, HLHS is the first indication for PC from prenatal diagnosis (7/16 cases in the same period) while in the literature, heart diseases are the second cause of TOP after the neurological causes. The overrepresentation of this pathology in the families who opt for PC may be due to the unconscious image that both professionals and families have of HLHS: severity of an inevitably fatal disease, rapid postnatal death, and no suffering. Our study may change this view: a child was in fact carrying a curable defect which was discovered 12 days after birth, 2 children died at 5 and 7 months, and 5 of 6 children had major analgesics at the end of life. Nevertheless, the families were supported and followed by the PC network, except 1 who ruptured all contacts in a context of presumed intense suffering, but the other 6 do not regret their choice despite the difficulties. PMID:22397767

Noseda, C; Mialet-Marty, T; Basquin, A; Letourneur, I; Bertorello, I; Charlot, F; Le Bouar, G; Bétrémieux, P

2012-04-01

329

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

PubMed

The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation. PMID:25624873

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

2014-01-01

330

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. PMID:25624873

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

2014-01-01

331

HUMAN SERVICES Direct Care  

E-print Network

Services Physical Health and Wellness Crisis Work Art Therapy Music Therapy Administration: AdvocacyPSYCHOLOGY HUMAN SERVICES Direct Care: Counseling Psychotherapy Case Management Mental Health specialties exist at the graduate level, for example school counseling, mental health counseling, counseling

Mountziaris, T. J.

332

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

333

Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study  

PubMed Central

Background According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. PMID:23866928

2013-01-01

334

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

335

Helping patients with serious illness live well through the promotion of adaptive coping: a report from the improving outpatient palliative care (IPAL-OP) initiative.  

PubMed

Continuity outpatient palliative care practice is characterized by long relationships between patients, families, and palliative care clinicians and by periods of relative stability when the disease and resultant symptoms are less active. Compared to inpatient palliative care, outpatient practice requires a greater focus on encouraging healthy coping and on helping patients to live well with serious illness. This paper discusses the opportunities to promote adaptive coping in the delivery of outpatient palliative care. PMID:24579823

Jacobsen, Juliet; Kvale, Elizabeth; Rabow, Michael; Rinaldi, Simone; Cohen, Susan; Weissman, David; Jackson, Vicki

2014-04-01

336

Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions  

PubMed Central

Background Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking. This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies. Methods A semi-structured expert meeting and qualitative, open interviews were deployed to explore professionals’ assumptions and wishes, which are considered to contain latent presumptions about the practice’s physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach. Results Respondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as “real contact” with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional “gray” network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists. Conclusions Professionals assume teleconsultation co-defines a new patient–professional relationship by extending hospital-based caregivers’ perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities. PMID:23497307

2013-01-01

337

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

338

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

339

Communication with Relatives and Collusion in Palliative Care: A Cross-Cultural Perspective  

PubMed Central

Handling collusion among patients and family members is one of the biggest challenges that palliative care professionals face across cultures. Communication with patients and relatives can be complex particularly in filial cultures where families play an important role in illness management and treatment decision-making. Collusion comes in different forms and intensity and is often not absolute. Some illness-related issues may be discussed with the patient, whereas others are left unspoken. Particularly in palliative care, the transition from curative to palliative treatment and discussion of death and dying are often topics involving collusion. Communication patterns may also be influenced by age, gender, age, and family role. This paper outlines different types of collusion and how collusion manifests in Indian and Western cultures. In addition, promising avenues for future research are presented. PMID:20606848

Chaturvedi, Santosh K.; Loiselle, Carmen G.; Chandra, Prabha S.

2009-01-01

340

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

341

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

342

Training the next generation of doctors in palliative care is the key to the new era of value-based care.  

PubMed

There is a common misperception that palliative care is just another term for hospice care. Although it includes hospice, palliative care is also the long-term coordinated care of the chronically ill, which is delivered at a cost savings. Why does it matter that the average American understand what palliative care means? Because the evidence shows that U.S. patients near the end of life are spending exorbitant amounts of money on health care they do not want and the country cannot afford.To better understand why palliative care is an important issue in the current debate about health care reform, the authors first briefly review landmark legal cases in the area of end-of-life care. They then discuss the role of palliative care in conversations in the current health care climate and conclude by emphasizing the importance of integrating palliative care into the standard medical curriculum.The authors predict that palliative care will be accepted in the United States as a much-needed and desirable field of medicine. Getting there, however, will require a multifaceted approach including payment reform, encouraging an open conversation among the U.S. public, and training physicians to offer the best possible care and guidance until a patient's last breath. PMID:25551861

Frist, William H; Presley, Martha K

2015-03-01

343

Bereaved informal cancer carers making sense of their palliative care experiences at home.  

PubMed

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones' death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care. PMID:19207604

Wong, W K Tim; Ussher, Jane

2009-05-01

344

Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.  

PubMed

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors. PMID:25124983

Bernheim, Jan L; Distelmans, Wim; Mullie, Arsène; Ashby, Michael A

2014-12-01

345

Health Care Costs in End-of-Life and Palliative Care: The Quest for Ethical Reform  

Microsoft Academic Search

Health reform in the United States must address both access to medical services and universal insurance coverage, as well as health care cost containment. Uncontrolled health care costs will undermine improvements in access and coverage in the long-run, and will also be detrimental to other important social programs and goals. Accordingly, the authors offer an ethical perspective on health care

Bruce Jennings; Mary Beth Morrissey

2011-01-01

346

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

347

Perinatal Palliative Care: Barriers and Attitudes of Neonatologists and Nurses in Poland  

PubMed Central

Objective. To identify barriers and personnel attitudes towards realization of palliative care principles in neonatological units. Study Design. An anonymous questionnaire was posted to all heads of departments and head nurses of all the 27 neonatological units in the Lodz area. Results. We received 46 (85%) questionnaires. Final analysis comprised 42 properly filled-in questionnaires (by 22 doctors and 20 nurses). In case of prenatal diagnosis of a lethal defect, 77.27% of doctors and 65% of nurses opted for informing the mother also about the possibility of pregnancy continuation and organization of palliative care after delivery. Most of respondents accepted conditions for abortion pointed by the Polish law. The most common barriers pointed out by both groups were insufficient knowledge of the personnel on palliative medicine and family preference for life sustaining treatment. Conclusions. Understanding attitudes of personnel towards palliative care and identification of barriers are a starting point for future efforts to improve the system of neonatological care. PMID:24288459

Respondek-Liberska, Maria; Przys?o, ?ukasz; Fendler, Wojciech; M?ynarski, Wojciech; Gulczy?ska, Ewa

2013-01-01

348

The difficulties assessing spiritual distress in palliative care patients: a qualitative study  

Microsoft Academic Search

This paper reports on a focus group study aimed at exploring the difficulties that palliative care healthcare professionals encounter while assessing the spiritual distress of their patients. Three focus groups were conducted in a hospice (n = 15). Participants were all healthcare professionals working in the hospice in-patient unit. Interviews were taped and later transcribed. The data was analysed through

S. Q. Abbas; S. Dein

2011-01-01

349

Getting the Message Across: Does the Use of Drama Aid Education in Palliative Care?  

ERIC Educational Resources Information Center

Drama is a promising means of delivering educational messages in palliative care. Research studies have found drama to be an effective means of delivering educational messages in other domains of learning, such as teaching health education to children and adults and engaging the general public in health policy development. This paper discusses the…

O'Connor, Margaret; Abbott, Jo-Anne; Recoche, Katrina

2012-01-01

350

Can Personal Resources Make a Difference? An Exploratory Study of Chinese Cancer Patients in Palliative Care  

Microsoft Academic Search

Objective: Social work's emphasis on the strengths and personal resources of clients can enrich our understanding of palliative care patients. In this study, availability of various personal resources to patients is examined. Also explored are differences in psychosocial outcome between patients with a particular personal resource and those without it.Methods: Clinical data mining was the research method. Clinical records of

Wallace C. H. Chan

2009-01-01

351

Next of kin’s experience of powerlessness and helplessness in palliative home care  

Microsoft Academic Search

Goals of work Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications. Patients and methods The study design was cross-sectional and targeted next of kin during

Anna Milberg; Peter Strang; Maria Jakobsson

2004-01-01

352

Bring on the Angels—H. L. Mencken, Death and Palliative Care  

Microsoft Academic Search

H. L. Mencken (1880-1956) was a brilliant American writer and journalist. He wrote the classic 3-volume The American Language. One topic he explored was the nature of death. This article examines Mencken’s thoughts on death and dying, Mencken’s own death, and the parallels between Mencken’s writing and the discipline of Palliative Care.

Frank Brennan

2011-01-01

353

Spiritual Concerns in Hindu Cancer Patients Undergoing Palliative Care: A Qualitative Study  

PubMed Central

Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care. PMID:24049350

Simha, Srinagesh; Noble, Simon; Chaturvedi, Santosh K

2013-01-01

354

Palliative care teaching in medical residency: a review of two POGO-e teaching products.  

PubMed

This is a comparison review of GeriaSims and Care of the Aging Medical Patient (CHAMP) modules addressing issues in palliative and hospice medicine found in the Portal of Geriatric Online Education, a free on-line repository of geriatric educational materials for medical educators. GeriaSims is a self-directed teaching module designed to systematically address many of the important questions involved in caring for individuals with chronic progressive and life-limiting illnesses. It is well suited for physicians, particularly medical residents and fellows in-training, who provide care for medically complicated elderly and terminally ill individuals. The CHAMP module is designed to familiarize physician educators with palliative and hospice medicine basics to teach residents and fellows through didactic slides, although it can probably be adapted for use by residents and fellows if audio commentary accompanies the slides. Both modules address practical approaches to addressing palliative care in patients and their families. They are useful teaching tools that address an important learning need and can be readily used to supplement current residency curriculum in hospice and palliative medicine. PMID:22642506

Lim, Lionel S; Kandavelou, Karthikeyan; Khan, Nabeela

2012-06-01

355

Creating Discursive Order at the End of Life: The Role of Genres in Palliative Care Settings  

ERIC Educational Resources Information Center

This article investigates an emerging practice in palliative care: dignity therapy. Dignity therapy is a psychotherapeutic intervention that its proponents assert has clinically significant positive impacts on dying patients. Dignity therapy consists of a physician asking a patient a set of questions about his or her life and returning to the…

Schryer, Catherine; McDougall, Allan; Tait, Glendon R.; Lingard, Lorelei

2012-01-01

356

Breaking Down Barriers: Hospice Palliative Care as a Human Right in Canada  

ERIC Educational Resources Information Center

The need to attend to terminally ill persons and provide improved quality of living and dying should be a national priority in Canada. Hospice palliative care (HPC), a person-centered approach that addresses the needs of the whole person, improves the quality of living and dying of persons facing a life-threatening illness. To ensure Canadians are…

Freeman, Shannon; Heckman, George; Naus, Peter J.; Marston, Hannah R.

2013-01-01

357

ETHICAL ISSUES ARISING FROM THE REQUIREMENT TO SIGN A CONSENT FORM IN PALLIATIVE CARE  

E-print Network

1 ETHICAL ISSUES ARISING FROM THE REQUIREMENT TO SIGN A CONSENT FORM IN PALLIATIVE CARE Authors://jme.bmjjournals.com/ifora/licence.dtl). inserm-00270886,version1-7Apr2008 #12;3 ABSTRACT French Healthcare Networks aim to help healthcare the functioning of the Network should be given to patients when they enter a Healthcare Network. The signature

Paris-Sud XI, Université de

358

[Perceptions of the multi-professional team on the implementation of palliative care in intensive care units].  

PubMed

The scope of this paper was to analyze the perceptions of the multi-professional team on the implementation of palliative care in an adult intensive care unit. An exploratory-descriptive study using a qualitative approach was conducted with 14 health professionals from a public teaching hospital. The information was collected between February and April 2012, by means of semi-structured interviews and non-participatory observation interpreted using content analysis. Three thematic categories were identified: Care for terminal patients in an ICU fostering physical comfort; Lack of preparation of the team in dealing with terminal patients; and Challenges of palliative care practices in the intensive care environment. The interviewed parties reported having some knowledge of the proposal for palliative care though divergences were observed in the therapeutic conduct of the team in the care provided, demonstrating a lack of interaction and communication among the professionals. The drafting of a national policy to promote care for terminally ill patients is necessary, as well as ongoing training of professionals and the creation of care protocols for promoting the comfort of the patients and their families during the end of life phase. PMID:23989566

da Silva, Ceci Figueredo; Souza, Dalila Melo; Pedreira, Larissa Chaves; dos Santos, Manuela Ribeiro; Faustino, Tássia Nery

2013-09-01

359

Nonconvulsive status epilepticus in a palliative care unit: when delirium is a seizure.  

PubMed

The search for an underlying cause of altered mental status not uncommonly becomes more challenging in the hospice and palliative care setting. Due to multiple coexisting conditions that affect mental status and shifting goals of care, discerning that single cause in this venue can become frustrating and even nonbeneficial at times. We present a case of nonconvulsive status epilepticus (NCSE), which multiple reports have shown to be a rarely contemplated cause of impaired consciousness. A concise review of NCSE follows, with emphasis on conditions that present similarly, precipitating factors, diagnostic and therapeutic considerations, and prognostic implications. Nonconvulsive status epilepticus is a reversible cause of altered consciousness, particularly when recognized promptly. In a palliative care unit, treatment should ultimately be guided by the patient's goals of care. PMID:24249828

Samala, Renato V; Parala-Metz, Armida; Davis, Mellar P

2015-03-01

360

A proposed systems approach to the evaluation of integrated palliative care  

Microsoft Academic Search

BACKGROUND: There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of

Daryl Bainbridge; Kevin Brazil; Paul Krueger; Jenny Ploeg; Alan Taniguchi

2010-01-01

361

A preliminary study into stress in palliative care: Optimism, self-efficacy and social support  

Microsoft Academic Search

Caring for the terminally ill is a demanding, but rewarding area of health care. Stressors unique to this working environment—dealing with patient death rather than cure, and supporting entire family units, for example—put caregivers at risk from stress related illness. This study investigated the buffering effects of optimism, self-efficacy and social support against two measures of stress within the palliative

N. J. Hulbert; V. L. Morrison

2006-01-01

362

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

PubMed Central

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

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

2015-01-01

363

Grasping Smoke: An Exploration of Health Care Professionals' Perceptions of the Concept of Spirituality as Applied to Palliative Care  

Microsoft Academic Search

Coupled with the contextual issues for HCP involvement in the spiritual sphere are the conceptual parameters, which informed this study. An examination of the objectives of this study identifies that it is rooted not only within the palliative care paradigm, but also within the language of discourse, used in the English-speaking societies. The conceptual framework for this study was therefore

Rob Murphy

364

An evaluation of Hospice New Zealand's interprofessional fundamentals of palliative care program at a single site.  

PubMed

Objective: To study the efficacy of two modules within the Fundamentals of Palliative Care educational program within a single site. The modules included the concepts of Essence of Palliative Care and Pain and Symptom Management. Method: A mixed-methods approach incorporating questionnaires and interviews was implemented. Two phases were included. First, a purposive sample of 22 workshop participants were invited to fill out evaluation questionnaires on two occasions (immediately after the session and four weeks as follow-up). Second, semistructured interviews were conducted and interviews transcribed and analyzed using content analysis. Results: Participants felt they gained further knowledge in palliative patient management and refined their clinical practice. The questionnaire feedback revealed that the Essence of Palliative Care module provided a breadth of content but had difficulties in capturing the diverse needs of all attendees. The Pain and Symptom Management module was perceived as more technical and clinical, and this suited health professionals with an informed background. The interviewee feedback (three nurses, three nurse educators, one manager) suggested that the learning outcomes were comprehensive but needed to be more sensitive to learner needs. The teaching and learning activities were perceived as useful and encouraging. However, learners came from diverse contexts, and it was difficult to suit all learning preferences. Assessment and evaluation processes required more psychometric attention. Significance of Results: The piloting of the Fundamentals of Palliative Care program at this single site was of benefit and relevance to participants in their clinical practice. Overall, participants felt the course was useful to them and that they were able to gain valuable knowledge and skills. Several areas could be refined to optimize the learning, including: (1) knowing attendee learning potentialities and prior experiences, (2) considering a more inclusive and formal assessment process, (3) creating diverse mechanisms for disseminating knowledge and skills, and (4) improving methods of evaluation. PMID:24852572

Henning, Marcus; Hu, Julie; Webster, Craig; Brown, Hadley; Murphy, Jo

2014-05-23

365

Palliative oncology: identity, progress, and the path ahead  

PubMed Central

Palliative care is a rapidly growing subspecialty of medicine entailing expert and active assessment, evaluation and treatment of the physical, psychological, social and spiritual needs of patients and families with serious illnesses. It provides an added layer of support to the patient's regular medical care. As cancer is detected earlier and its treatments improve, palliative care is increasingly playing a vital role in the oncology population. Because of these advances in oncology, the role of palliative care services for such patients is actively evolving. Herein, we will highlight emerging paradigms in palliative care and attempt to delineate key education, research and policy areas that lie ahead for the field of palliative oncology. Despite the critical need for improving multi-faceted and multi-specialty symptom management and patient–physician communication, we will focus on the interface between palliative care and oncology specialists, a relationship that can lead to better overall patient care on all of these levels. PMID:22628415

Epstein, A. S.; Morrison, R. S.

2012-01-01

366

[Palliative care birth plan: a field of perinatal medicine to build].  

PubMed

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan. PMID:23578964

Tosello, B; Le Coz, P; Payot, A; Gire, C; Einaudi, M-A

2013-04-01

367

Improving cultural competency among hospice and palliative care volunteers: recommendations for social policy.  

PubMed

This case study of 14 hospice and palliative care volunteers looked for recommendations and suggestions on how to increase cultural competency among hospice volunteers. In-depth interviews were conducted with a hospice in Toronto, Canada, and findings reveal that volunteers have very specific and diverse recommendations on how they prefer to be briefed and educated on cultural competency issues surrounding their patients. Findings also reveal hospice volunteers want more cultural competency training and acknowledge the importance of being culturally competent. This article concludes with a précis on recommendations for increasing cultural competency in hospice and palliative care for both volunteers and agencies and discusses the top 4 future trends in cultural competency for hospice care. PMID:21727150

Jovanovic, Maja

2012-06-01

368

The lived experience of constipation in cancer patients in palliative hospital-based home care.  

PubMed

Constipation is a common and well-studied symptom in palliative care. Most previous studies have focused on the frequency and management of constipation. The current study aimed to investigate the lived experience of constipation among cancer patients in palliative hospital-based home care. Eleven cancer patients admitted to a hospital-based home care unit in Sweden who had experienced constipation participated in this study. Semi-structured interviews were conducted and a qualitative, phenomenological approach was used. Three themes emerged: bodily suffering; mental preoccupation and a reminder of death; and avoidance and social isolation. The experience of constipation was described as an extensive complete person-experience that must be prevented. To prevent unnecessary suffering nurses need to be proactive in the assessment of constipation. PMID:15365483

Friedrichsen, Maria; Erichsen, Eva

2004-07-01

369

A Canadian Experience of Integrating Complementary Therapy in a Hospital Palliative Care Unit  

PubMed Central

Abstract Background The provision of complementary therapy in palliative care is rare in Canadian hospitals. An Ontario hospital's palliative care unit developed a complementary therapy pilot project within the interdisciplinary team to explore potential benefits. Massage, aromatherapy, Reiki, and Therapeutic Touch™ were provided in an integrated approach. This paper reports on the pilot project, the results of which may encourage its replication in other palliative care programs. Objectives The intentions were (1) to increase patients'/families' experience of quality and satisfaction with end-of-life care and (2) to determine whether the therapies could enhance symptom management. Results Data analysis (n=31) showed a significant decrease in severity of pain, anxiety, low mood, restlessness, and discomfort (p<0.01, 95% confidence interval); significant increase in inner stillness/peace (p<0.01, 95% confidence interval); and convincing narratives on an increase in comfort. The evaluation by staff was positive and encouraged continuation of the program. Conclusions An integrated complementary therapy program enhances regular symptom management, increases comfort, and is a valuable addition to interdisciplinary care. PMID:24020920

Tavares, Marianne; Berger, Brian

2013-01-01

370

Clinical Practice Guidelines for Delirium Management: Potential Application in Palliative Care  

PubMed Central

Context Delirium occurs in patients across a wide array of health care settings. The extent to which formal management guidelines exist or are adaptable to palliative care is unclear. Objectives This review aims to 1) source published delirium management guidelines with potential relevance to palliative care settings, 2) discuss the process of guideline development, 3) appraise their clinical utility, and 4) outline the processes of their implementation and evaluation and make recommendations for future guideline development. Methods We searched PubMed (1990–2013), Scopus, U.S. National Guideline Clearinghouse, Google, and relevant reference lists to identify published guidelines for the management of delirium. This was supplemented with multidisciplinary input from delirium researchers and other relevant stakeholders at an international delirium study planning meeting. Results There is a paucity of high-level evidence for pharmacological and non-pharmacological interventions in the management of delirium in palliative care. However, multiple delirium guidelines for clinical practice have been developed, with recommendations derived from “expert opinion” for areas where research evidence is lacking. In addition to their potential benefits, limitations of clinical guidelines warrant consideration. Guidelines should be appraised and then adapted for use in a particular setting before implementation. Further research is needed on the evaluation of guidelines, as disseminated and implemented in a clinical setting, focusing on measurable outcomes in addition to their impact on quality of care. Conclusion Delirium clinical guidelines are available but the level of evidence is limited. More robust evidence is required for future guideline development. PMID:24766743

Bush, Shirley H.; Bruera, Eduardo; Lawlor, Peter G.; Kanji, Salmaan; Davis, Daniel H.J.; Agar, Meera; Wright, David; Hartwick, Michael; Currow, David C.; Gagnon, Bruno; Simon, Jessica; Pereira, José L.

2014-01-01

371

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

372

Access to Palliative Care Among Patients Treated at a Comprehensive Cancer Center  

PubMed Central

Background. Palliative care (PC) is a critical component of comprehensive cancer care. Previous studies on PC access have mostly examined the timing of PC referral. The proportion of patients who actually receive PC is unclear. We determined the proportion of cancer patients who received PC at our comprehensive cancer center and the predictors of PC referral. Methods. We reviewed the charts of consecutive patients with advanced cancer from the Houston region seen at MD Anderson Cancer Center who died between September 2009 and February 2010. We compared patients who received PC services with those who did not receive PC services before death. Results. In total, 366 of 816 (45%) decedents had a PC consultation. The median interval between PC consultation and death was 1.4 months (interquartile range, 0.5–4.2 months) and the median number of medical team encounters before PC was 20 (interquartile range, 6–45). On multivariate analysis, older age, being married, and specific cancer types (gynecologic, lung, and head and neck) were significantly associated with a PC referral. Patients with hematologic malignancies had significantly fewer PC referrals (33%), the longest interval between an advanced cancer diagnosis and PC consultation (median, 16 months), the shortest interval between PC consultation and death (median, 0.4 months), and one of the largest numbers of medical team encounters (median, 38) before PC. Conclusions. We found that a majority of cancer patients at our cancer center did not access PC before they died. PC referral occurs late in the disease process with many missed opportunities for referral. PMID:23220843

Kim, Sun-Hyun; Kwon, Jung Hye; Tanco, Kimberson Cochien; Zhang, Tao; Kang, Jung Hun; Rhondali, Wadih; Chisholm, Gary; Bruera, Eduardo

2012-01-01

373

The Project ENABLE II Randomized Controlled Trial to Improve Palliative Care for Patients with Advanced Cancer  

PubMed Central

Context There are few randomized controlled trials of the effectiveness of palliative care. Objective To determine the effect of a palliative care intervention on quality of life (QOL), symptom intensity, mood, and resource utilization. Design, Setting, and Participants Randomized controlled trial (November 2003-May 2008) of 322 patients with advanced cancer and an identified caregiver in a rural, NCI-designated comprehensive cancer center (the Norris Cotton Cancer Center, Lebanon, NH) and affiliated outreach clinics and Veteran’s Affairs Medical Center (White River Junction, VT). Intervention A multi-component, psycho-educational, palliative care intervention (Project ENABLE) conducted by an advanced practice nurse consisting of 4 weekly educational sessions and monthly follow-up until death or study completion. Main Outcome Measures (1) The Functional Assessment of Chronic Illness Therapy-Palliative (range: 0 to 184; higher scores indicate better QOL), (2) Edmonton Symptom Assessment Scale (range: 0 to 900; higher scores indicate greater symptom intensity), (3) Center for Epidemiological Studies-Depression (range: 0 to 60; higher scores indicate more depressive symptoms), completed at baseline, 1 month and every 3 months until death or study completion, (4) days in hospital, intensive care unit (ICU), and emergency department visits recorded in the medical record. Results 322 participants with gastrointestinal (41%), lung (36%), genitourinary (12%), and breast (10%) cancer were randomized. Estimated treatment effects (intervention minus usual care) for all subjects were 4.6 (P = .02) for QOL, ?27.8 (P = .06) for symptom intensity, and ?1.8 (P = .02) for depressed mood. Estimated average treatment effects in the sample of participants who died during the study were 8.6 (P = .02) for QOL, ?24.2 (P = .24) for symptom intensity, and ?2.7 (P = .03) for depressed mood. Days in hospital, intensive care unit, and emergency department visits were not different between groups. Conclusions Compared to participants receiving usual oncology care, participants receiving a palliative care intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher QOL and mood; comparisons of symptom intensity and days in hospital, ICU, and emergency department visits were not statistically significant. Trial Registration clinicaltrials.gov Identifier: NCT00253383 PMID:19690306

Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Balan, Stefan; Brokaw, Frances C.; Seville, Janette; Hull, Jay G.; Li, Zhongze; Tosteson, Tor; Byock, Ira R.; Ahles, Tim A.

2013-01-01

374

Principles of wound care in hospice and palliative medicine.  

PubMed

The author presents a case report of an elderly patient who was extremely frail and debilitated. The patient was a resident of a skilled care facility because of advanced chronic illnesses that included end-stage Alzheimer, dementia, and Parkinson disease. This patient had acquired multiple stages III to IV pressure ulcers. Aggressive wound care treatment was initiated with partial success, but the patient passed away before the wound could completely heal. Medical literature was reviewed to offer the best possible wound care approach in providing care to patients who are terminally ill without compromising the patient's dignity and comfort and at the same time delivering cost-effective quality care. PMID:20167837

Navaid, Musharraf; Melvin, Terry; Berube, Judy; Dotson, Sherri

2010-08-01

375

The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.  

PubMed

The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings. PMID:24813483

Gonçalves-Pereira, Manuel; Zarit, Steven H

2014-01-01

376

Palliative care research on the island of Ireland over the last decade: a systematic review and thematic analysis of peer reviewed publications  

PubMed Central

Background As palliative care research continues to expand across Europe, and the world, questions exist about the nature and type of research undertaken in addition to the research priorities for the future. This systematic review, which is the first stage of a larger scale study to identify the research priorities for palliative care on the island of Ireland, examined palliative care research conducted on the island over the last decade. Methods A comprehensive search strategy was implemented and strict eligibility criteria were applied in order to identify relevant peer-reviewed journal articles. Inclusion criteria were all of the palliative care studies undertaken on the island of Ireland and published between January 2002 and May 2012. These were assessed in relation to year, setting, sample size, research methodology, and relevant findings. Results 412 publications were identified for screening and their abstracts obtained. After eliminating articles that did not meet the inclusion criteria, 151 remained for further analysis. A thematic analysis of 128 studies published between 2006 and 2012 revealed eight core themes: (1) specific groups/populations; (2) services and settings; (3) management of symptoms (physical, psychological, social); (4) bereavement; (5) communication and education; (6) death and dying; (7) spirituality; and (8) complementary and alternative medicine/intervention (CAM). There was an upward trend in the number of publications in palliative care research over the last ten years with over 72% of studies being published within the previous four years. A slightly higher number of studies were quantitative in nature (surveys, questionnaires, standardised assessments) followed by qualitative (individual and focus group interviews, case studies, documentary analysis and retrospective case note reviews), mixed methods, and systematic reviews. Conclusions Whilst there has been a welcome growth in palliative care research across Ireland, this has largely been needs-based and small scale studies. In contrast, international researchers and decision makers recommend the need for more outcomes focused multidisciplinary research. An examination of palliative care research is an essential first step in seeking to develop future priority areas for further research, highlighting opportunities for future collaboration both nationally and internationally. PMID:24006932

2013-01-01

377

Burnout in nurses working in Portuguese palliative care teams: a mixed methods study.  

PubMed

Repeat contact with suffering, dying, and death is considered to be a risk factor for burnout among health professionals, particularly nurses working in palliative care. A mixed methods study was conducted to identify burnout levels, risk and protective factors, prevention strategies, and the emotional impact of working in palliative care among nurses in Portugal. A quantitative questionnaire was completed by nursing members of nine different palliative care teams and was supported by interviews and observation. Although the participants were exposed to risk factors, such as work overload, disorganisation, difficult relationships within the team and with patients' relatives, they showed a low risk of burnout. These results appear to be related both to the protective factors identified-namely the ethic of care in the relationship the nurses establish with patients, families, and within their teams-and to the preventive strategies they actively adopt for burnout prevention. The positive aspects of the nurses' roles help them to build a positive view of their work, which also promotes their own personal and professional development. PMID:23123982

Fonseca, Antonio; Pereira, Sandra; Carvalho, Ana Sofia

2012-08-01

378

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

Federal Register 2010, 2011, 2012, 2013, 2014

...Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs...Dr. Amanda Greene, Office of Science Policy and Public Liaison, NINR, NIH...September 16, 2011. Amanda Greene, Science Evaluation Officer, NINR, National...

2011-09-23

379

[Palliative care in patients with advanced chronic kidney disease (stage 5) not amenable to dialysis treatment].  

PubMed

- Palliative care is not "the absence of KRT", but an alternative to it in very selected cases. Both the patient and the family should have the absolute certainty that noninclusion or for KRT does not imply a reduction in the medical care received by the patient or a survival of worse quality. - The two main causes for deselection are the patient's refusal to enter dialysis and the presence of severe associated comorbidity. - Each center should assess these figures, their own estimates, the availability of resources and their organizational capacity to determine whether to initiate or not a specific program of palliative care in end-stage (PCU-ACKD). - Follow-up will be made both in the hospital and at home. Home care of the end-stage uremic patient will require involvement of the family and especially of a primary caregiver to support the process, centralize patient care and handle relations with the care team. Appropriate information and training of the caregiver will allow patient care to be carried out in the patient's usual home environment and reduce the anxiety and overload of the person taking on the main responsibility for care. PMID:19018751

Tejedor, A; de Las Cuevas Bou, X

2008-01-01

380

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.

381

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

Microsoft Academic Search

Background  Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients'\\u000a levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South\\u000a Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with

Lucy E Selman; Irene J Higginson; Godfrey Agupio; Natalya Dinat; Julia Downing; Liz Gwyther; Thandi Mashao; Keletso Mmoledi; Tony Moll; Lydia Mpanga Sebuyira; Barbara Ikin; Richard Harding

2011-01-01

382

[Psychiatric disorders in palliative care and at the end of life].  

PubMed

Patients confronted to advanced organic diseases at a palliative stage can present psychological distress that might announce the occurrence of genuine psychiatric disorders. Some frequent and comprehensible symptoms such as sadness, mild agitation, anxiety or more disturbing such as hallucinations, delusions or suicidal ideations must alert the clinician who should not minimize them by attributing them in a reactive way to the consequences of the evolution of physical disease or treatment's side effects. Literature data regarding psychiatric disorders (mainly anxiety disorders, delirium and depressive disorders) in palliative care are emerging and can guide clinicians in their role to detect them and providing early and efficient management. Occurrence of warning symptoms of psychiatric disorders can impaired quality of life and impact the prognosis of patients already weakened by the context of an advanced physical disease. The clinician will have to be careful to any psychiatric prodromic symptom and not hesitate to treat and to refer if necessary to a heath mental professional. PMID:25767042

Reich, Michel

2015-04-01

383

Interdisciplinary palliative care, including massage, in treatment of amyotrophic lateral sclerosis.  

PubMed

Amyotrophic lateral sclerosis (ALS) is a progressive fatal neurological disease that affects approximately 20,000 Americans. Symptoms include muscle weakness, fatigue, twitching, atrophy, spasticity, pain, oropharyngeal dysfunction, pseudobulbar affect, weight loss, and respiratory impairment. Death occurs within 3-5 yr after onset of symptoms, with diagnosis taking from 11 to 17.5 months. The only FDA-approved drug for ALS is Riluzole, which only increases the life expectancy by a few months. All other treatments for ALS provide symptom management to improve the patient's quality of life. An interdisciplinary palliative care team for the ALS patient helps to reduce the stress that the illness places on families. Massage can be a useful adjunctive treatment for spasticity and pain when medication side effects are unwanted. A holistic interdisciplinary palliative care team supports both the patient and the family improving their quality of life. PMID:19761955

Blatzheim, Kendra

2009-10-01

384

Home-based functional walking program for advanced cancer patients receiving palliative care: a case series  

PubMed Central

Background Although meta-analyses have demonstrated that physical activity can positively impact quality of life outcomes in early stage cancer patients, it is not yet known whether these benefits can be extended to patients with advanced cancer. In a previous pilot survey of patients with advanced cancer with a median survival of 104 days, participants felt willing and able to participate in a physical activity intervention, and reported a strong preference for walking and home-based programming. Here, we report on the initial development and feasibility of a home-based functional walking program in patients with advanced cancer receiving palliative care. Methods Nine adult patients were recruited from outpatient palliative care clinics and palliative home care. A pilot intervention trial was conducted over a 6-week period. The McGill Quality of Life Questionnaire (MQOL), Late Life Function and Disability Instrument (LLFDI), Edmonton Symptom Assessment System (ESAS), Seniors Fitness Test, four-test balance scale, and grip strength, were performed pre- and post-intervention. Participants wore activPAL™ accelerometers to monitor ambulatory activity levels. Results Of the nine recruited participants, three participants dropped out prior to baseline testing due to hospital admission and feeling overwhelmed, and three participants dropped out during the intervention due to severe symptoms. Only three participants completed the intervention program, pre- and post-intervention assessments: two reported improvements in total MQOL scores, yet all three shared an overall trend towards worsening symptom and total fatigue scores post-intervention. Two participants passed away within 90 days of completing the intervention. Conclusions This case series demonstrates the challenges of a physical activity intervention in patients with advanced cancer receiving palliative care. Further feasibility research is required in this patient population. Trial registration This study is registered under ClinicalTrials.gov as NCT00438620. PMID:23663868

2013-01-01

385

Hopeful Thinking and Level of Comfort Regarding Providing Pediatric Palliative Care: A Survey of Hospital Nurses  

Microsoft Academic Search

OBJECTIVE. The purpose of this work was to test the hypothesis that individual nurses' level of hope is associated with greater self-reported comfort and competence in providing palliative care. METHODS. We conducted a Web-based cross-sectional survey at the Children's Hos- pital of Philadelphia, a large referral hospital, during the spring of 2005 with all of the employed nurses. The response

Chris Feudtner; Gina Santucci; James A. Feinstein; C. Rick Snyder; Mary T. Rourke; Tammy I. Kang

2010-01-01

386

Development, implementation and evaluation of a pain management and palliative care educational seminar for medical students  

PubMed Central

BACKGROUND: Despite calls for the development and evaluation of pain education programs during early medical student training, little research has been dedicated to this initiative. OBJECTIVES: To develop a pain management and palliative care seminar for medical students during their surgical clerkship and evaluate its impact on knowledge over time. METHODS: A multidisciplinary team of palliative care and pain experts worked collaboratively and developed the seminar over one year. Teaching methods included didactic and case-based instruction, as well as small and large group discussions. A total of 292 medical students attended a seminar during their third- or fourth-year surgical rotation. A 10-item test on knowledge regarding pain and palliative care topics was administered before the seminar, immediately following the seminar and up to one year following the seminar. Ninety-five percent (n=277) of students completed the post-test and 31% (n=90) completed the follow-up test. RESULTS: The mean pretest, post-test and one-year follow-up test scores were 51%, 75% and 73%, respectively. Mean test scores at post-test and follow-up were significantly higher than pretest scores (all P<0.001). No significant difference was observed in mean test scores between follow-up and post-test (P=0.559), indicating that students retained knowledge gained from the seminar. CONCLUSIONS: A high-quality educational seminar using interactive and case-based instruction can enhance students’ knowledge of pain management and palliative care. These findings highlight the feasibility of developing and implementing pain education material for medical students during their training. PMID:24851239

Paneduro, Denise; Pink, Leah R; Smith, Andrew J; Chakraborty, Anita; Kirshen, Albert J; Backstein, David; Woods, Nicole N; Gordon, Allan S

2014-01-01

387

Trends in Canadian hospital standardised mortality ratios and palliative care coding 2004–2010: a retrospective database analysis  

PubMed Central

Background The hospital standardised mortality ratio (HSMR), anchored at an average score of 100, is a controversial macromeasure of hospital quality. The measure may be dependent on differences in patient coding, particularly since cases labelled as palliative are typically excluded. Objective To determine whether palliative coding in Canada has changed since the 2007 national introduction of publicly released HSMRs, and how such changes may have affected results. Design Retrospective database analysis. Setting Inpatients in Canadian hospitals from April 2004 to March 2010. Patients 12?593?329 hospital discharges recorded in the Canadian Institute for Health Information (CIHI) Discharge Abstract Database from April 2004 to March 2010. Measurements Crude mortality and palliative care coding rates. HSMRs calculated with the same methodology as CIHI. A derived hospital standardised palliative ratio (HSPR) adjusted to a baseline average of 100 in 2004–2005. Recalculated HSMRs that included palliative cases under varying scenarios. Results Crude mortality and palliative care coding rates have been increasing over time (p<0.001), in keeping with the nation's advancing overall morbidity. HSMRs in 2008–2010 were significantly lower than in 2004–2006 by 8.55 points (p<0.001). The corresponding HSPR rises dramatically between these two time periods by 48.83 points (p<0.001). Under various HSMR scenarios that included palliative cases, the HSMR would have at most decreased by 6.35 points, and may have even increased slightly. Limitations Inability to calculate a definitively comparable HSMR that include palliative cases and to account for closely timed changes in national palliative care coding guidelines. Conclusions Palliative coding rates in Canadian hospitals have increased dramatically since the public release of HSMR results. This change may have partially contributed to the observed national decline in HSMR. PMID:23131397

Chong, Christopher AKY; Nguyen, Geoffrey C; Wilcox, M Elizabeth

2012-01-01

388

How can I help you? A study of the perceived importance of different kinds of hospice palliative care volunteer support.  

PubMed

A total of 143 adults were asked to imagine that they had recently been diagnosed with a life-threatening illness. After reading about the roles of hospice palliative care volunteers, participants were asked whether they would use the services of a volunteer to help them and their loved ones get through this difficult time. The vast majority (94.4%) of the participants said they would choose to have a volunteer. These participants were then asked to rate the importance of 23 different supportive tasks that volunteers can perform. These tasks reflected the different kinds of support--emotional, social, practical, informational, and religious/spiritual--that hospice palliative care volunteers typically provide. Overall, the practical support category (eg, ''Having the volunteer run errands for me'') received the highest mean importance rating. Significant gender differences were found for the categories of emotional support (eg, ''Having the volunteer hold my hand'') and social support (eg, ''Having the volunteer share hobbies and interests with me''), with females rating both of these kinds of support as being more important to them than males did. The findings of this study may have practical implications for volunteer program coordinators. PMID:21051783

Claxton-Oldfield, Stephen; Gosselin, Natasha

2011-06-01

389

The response of a Swiss university hospital's palliative care consult team to assisted suicide within the institution.  

PubMed

In January 2006 the Centre Hospitalier Universitaire Vaudois (CHUV), a large university hospital in Lausanne, Switzerland, became the first hospital in Switzerland to allow assisted suicide (AS) in exceptional cases within its walls. However, euthanasia is illegal. This decision has posed several ethical and practical dilemmas for the hospital's palliative care consult service. To address these, the team embarked on a formal process of open dialogue amongst its members with the goal of identifying a collective response and position. This process involved meetings every 4 to 6 weeks over the course of 10 months. An iterative process unfolded. One of the principal dilemmas relates to finding a balance between the team's position against AS and the patient's autonomy and the institution's directive. Although all team members expressed opposition to AS, there were mixed opinions as to whether or not the team members should be present during the act if requested so by patients. Some thought this could be misinterpreted as complicity in the act and could send out mixed messages to the public and other health professionals about palliative care. Others felt that the team's commitment to nonabandonment obliged them to be present even if they did not provide the drug or give any advice or assistance. The implications of nonabandonment are explored, as are several other questions such as whether or not the teams are obliged to provide detailed information on AS when requested by patients. PMID:18612033

Pereira, J; Laurent, P; Cantin, B; Petremand, D; Currat, T

2008-07-01

390

Management of Ramsay Hunt Syndrome in an Acute Palliative Care Setting  

PubMed Central

Introduction: The Ramsay Hunt syndrome is characterized by combination of herpes infection and lower motor neuron type of facial nerve palsy. The disease is caused by a reactivation of Varicella Zoster virus and can be unrepresentative since the herpetic lesions may not be always be present (zoster sine herpete) and might mimic other severe neurological illnesses. Case Report: A 63-year-old man known case of carcinoma of gall bladder with liver metastases, post surgery and chemotherapy with no scope for further disease modifying treatment, was referred to palliative care unit for best supportive care. He was on regular analgesics and other supportive treatment. He presented to Palliative Medicine outpatient with 3 days history of ipsilateral facial pain of neuropathic character, otalgia, diffuse vesciculo-papular rash over ophthalmic and maxillary divisions of left trigeminal nerve distribution of face and ear, and was associated with secondary bacterial infection and unilateral facial edema. He was clinically diagnosed to have Herpes Zoster with superadded bacterial infection. He was treated with tablet Valacyclovir 500 mg four times a day, Acyclovir cream for local application, Acyclovir eye ointment for prophylactic treatment of Herpetic Keratitis, low dose of Prednisolone, oral Amoxicillin and Clindamycin for 7 days, and Pregabalin 150 mg per day. After 7 days of treatment, the rash and vesicles had completely resolved and good improvement of pain and other symptoms were noted. Conclusion: Management of acute infections and its associated complications in an acute palliative care setting improves both quality and length of life. PMID:25709192

Ostwal, Shrenik; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann

2015-01-01

391

Expert opinion on detecting and treating depression in palliative care: A Delphi study  

PubMed Central

Background There is a dearth of data regarding the optimal method of detecting and treating depression in palliative care. This study applied the Delphi method to evaluate expert opinion on choice of screening tool, choice of antidepressant and choice of psychological therapy. The aim was to inform the development of best practice recommendations for the European Palliative Care Research Collaborative clinical practice guideline on managing depression in palliative care. Methods 18 members of an international, multi-professional expert group completed a structured questionnaire in two rounds, rating their agreement with proposed items on a scale from 0-10 and annotating with additional comments. The median and range were calculated to give a statistical average of the experts' ratings. Results There was contention regarding the benefits of screening, with 'routine informal asking' (median 8.5 (0-10)) rated more highly than formal screening tools such as the Hospital Anxiety and Depression Scale (median 7.0 (1-10). Mirtazapine (median 9 (7-10) and citalopram (median 9 (5-10) were the considered the best choice of antidepressant and cognitive behavioural therapy (median 9.0 (3-10) the best choice of psychological therapy. Conclusions The range of expert ratings was broad, indicating discordance in the views of experts. Direct comparative data from randomised controlled trials are needed to strengthen the evidence-base and achieve clarity on how best to detect and treat depression in this setting. PMID:21619580

2011-01-01

392

The Impact of Pediatric Palliative Care Education on Medical Students' Knowledge and Attitudes  

PubMed Central

Purpose. Most undergraduate palliative care curricula omit pediatric palliative care (PPC) issues. Aim of the study was to evaluate the pilot education programme. Methods. All 391 students of Faculty of Medicine (FM) and 59 students of Division of Nursing (DN) were included in anonymous questionnaire study. Respondents were tested on their knowledge and attitude towards PPC issues before and at the end of the programme and were expected to evaluate the programme at the end. Results. For final analysis, authors qualified 375 double forms filled in correctly (320 FM and 55 DN). Before the programme, students' knowledge assessed on 0–100-point scale was low (FM: median: 43.35 points; 25%–75%: (40p–53.3p); DN: 26.7p; 13.3p–46.7p), and, in addition, there were differences (P < 0.001) between both faculties. Upon completion of the programme, significant increase of the level of knowledge in both faculties was noted (FM: 80p; 73.3–100; DN: 80p; 66.7p–80p). Participation in the programme changed declared attitudes towards some aspects of withholding of special procedures, euthanasia, and abortion. Both groups of students positively evaluated the programme. Conclusions. This study identifies medical students' limited knowledge of PPC. Educational intervention changes students' attitudes to the specific end-of-life issues. There is a need for palliative care curricula evaluation. PMID:24501581

Przys?o, ?ukasz; K?dzierska, Bogna; Stolarska, Ma?gorzata; M?ynarski, Wojciech

2013-01-01

393

Management of Hemichorea Hemiballismus Syndrome in an Acute Palliative Care Setting  

PubMed Central

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

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

2015-01-01

394

An Integrated Course in Pain Management and Palliative Care Bridging the Basic Sciences and Pharmacy Practice  

PubMed Central

Objective. To describe the development of an integrated pain and palliative care course and to investigate the long-term effectiveness of the course during doctor of pharmacy (PharmD) students’ advanced pharmacy practice experiences (APPEs) and in their practice after graduation. Design. Roseman University College of Pharmacy faculty developed a 3-week elective course in pain and palliative care by integrating relevant clinical and pharmaceutical sciences. Instructional strategies included lectures, team and individual activities, case studies, and student presentations. Assessment. Students who participated in the course in 2010 and 2011 were surveyed anonymously to gain their perception about the class as well as the utility of the course during their APPEs and in their everyday practice. Traditional and nontraditional assessment of students confirmed that the learning outcomes objectives were achieved. Conclusions. Students taking the integrated course on pain management and palliative care achieved mastery of the learning outcome objectives. Surveys of students and practicing pharmacists who comple