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1

Practical guidelines for developing new palliative care services: resource management  

PubMed Central

The data are relatively clear cut that palliative care improves quality of life and symptom control, improves quality of care by reducing aggressive but unsuccessful end of life care, and reduces costs. That should be an easy message to deliver to the public, health care administrators, payers, and governments. In fact, the arguments to develop palliative care services must be clear and concise, and make the clinical and financial case for the services that the palliative care team wants to deliver. Here, we discuss some of the types of models including consult services, outpatient programs, and inpatient units; the important components; some easy to use screening tools; components of the consultation team; a model medical record that increases “prompts” to do best palliative care; and data to report to supervisors. PMID:22628420

Smith, T. J.; Coyne, P. J.; Cassel, J B.

2012-01-01

2

Palliative Care  

MedlinePLUS

Palliative care specialists are medical professionals who work with your child and the healthcare team to help make your child as comfortable as possible. Palliative care teams are called by different names at various ...

3

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

4

Palliative Care  

MedlinePLUS

... and your child, and are consistent with your personal values and beliefs. Palliative Care Basics Palliative means ... Kansas City Read More September 11, 2014 Funding Process Reaches Next Steps for Spinal Muscular Atrophy Clinical ...

5

Evaluation of a palliative care service: problems and pitfalls.  

PubMed Central

OBJECTIVE--To evaluate a palliative care home support team based on an inpatient unit. DESIGN--Randomised controlled trial with waiting list. Patients in the study group received the service immediately, those in the control group received it after one month. Main comparison point was at one month. SETTING--A city of 300,000 people with a publicly funded home care service and about 200 general practitioners, most of whom provide home care. MAIN OUTCOME MEASURES--Pain and nausea levels were measured at entry to trial and at one month, as were quality of life for patients and care givers' health. RESULTS--Because of early deaths, problems with recruitment, and a low compliance rate for completion of questionnaires, the required sample size was not attained. CONCLUSION--In designing evaluations of palliative care services, investigators should be prepared to deal with the following issues: attrition due to early death, opposition to randomisation by patients and referral sources, ethical problems raised by randomisation of dying patients, the appropriate timing of comparison points, and difficulties of collecting data from sick or exhausted patients and care givers. Investigators may choose to evaluate a service from various perspectives using different methods: controlled trials, qualitative studies, surveys, and audits. Randomised trials may prove to be impracticable for evaluation of palliative care. Images p1341-a PMID:7532501

McWhinney, I. R.; Bass, M. J.; Donner, A.

1994-01-01

6

Palliative day care: what do services do? Palliative Day Care Project Group.  

PubMed

Palliative day care has expanded rapidly in the recent years, but the types of care available vary. To understand more about the different models of day care we conducted a questionnaire survey of the 43-day care centres in North and South Thames Regions in England (total population 13.75 million). The questionnaire covered: management, staffing and organizational policies; the numbers, types and reasons for referral; and the services and care provided. Forty (93%) centres responded. Centres had operated for between 1 and 16 years, mean 8 years. A total of 2268 day care places (mean per centre, 57) were available per week--with an estimated 1.77 places per 10,000 population. Twenty centres had never had a waiting list or had to prioritize patients; 30 had a discharge policy. The mean time the longest patient had been attending was 4.5 years, range 1-12 years. There were a total of 3627 new referrals per year or 3.06 per 10,000 population. Of the 2054 patients recorded by day care centres during a week of detailed monitoring, 1850 (90%) had cancer and 204 had other diseases--most commonly HIV or AIDS, motor neurone disease or stroke. Thirty-four centres were managed by nurses, two by social work or social service professionals, and the remainder by people with other backgrounds. Most units had doctors, nurses, chaplains, managers, aromatherapists and hairdressers, but occupational therapists, social workers, chiropodists, dietitians and music and art therapists were much more varied, as was whether these posts were paid. The most common activities were: review of patients' symptoms or needs, monitoring symptoms, bathing, wound care, physiotherapy, hairdressing and aromatherapy. Centres describing themselves as more or mostly social were less likely to undertake daily assessment of new symptoms and wound care (chi-squared 13.0, 10.1, respectively, df 4, P < 0.05). However, we found no significant differences between centres describing themselves as more medical or more social in reported levels of staffing, who was in charge, funding or most activities. The findings suggest that there are core activities offered in palliative day care, but also variations in medical assessments, nurse-led clinics, trips, art and music therapy, and artistic activities. PMID:10974979

Higginson, I J; Hearn, J; Myers, K; Naysmith, A

2000-07-01

7

Providing Palliative Care to People with Intellectual Disabilities: Services, Staff Knowledge, and Challenges  

Microsoft Academic Search

People with intellectual disabilities require access to compassionate, quality, and effective palliative and end- of-life care when facing serious, life-limiting illness. This study was designed to document the degree to which hospice and palliative care services were provided to New Jersey residents with intellectual disabilities, and the challenges in providing this care. Surveys were designed to assess the provision of

Gary L. Stein

2008-01-01

8

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

9

Palliative care.  

PubMed Central

Though many of the treatment strategies used in palliative care have never been subjected to clinical trial, it has been argued that advances in palliative care have outstripped those in many other specialties. This article is not a comprehensive review of therapeutic options, nor even of recent advances in this topic, but concentrates on the latest developments and controversies in the pharmacological treatment of four frequent and important symptoms: neuropathic pain, anorexia and cachexia, intestinal obstruction, and breathlessness. It is difficult to perform blinded, randomised trials in patients with advanced disease and poor performance status, yet it is these patients who may gain most from the adoption of new well evaluated treatment strategies. Images p1360-a p1361-a p1361-b PMID:7517247

Davis, C. L.; Hardy, J. R.

1994-01-01

10

Provision of palliative care and pain management services for oncology patients.  

PubMed

Early initiation of palliative care to address pain and other symptoms offers the potential to improve quality of life for patients with cancer. The approaches to implementing and delivering palliative care and pain management services vary depending on patient needs, available resources, provider training, and clinical setting. This article describes the experiences in developing programs in which the need for early palliative care or pain management services for patients with cancer was recognized. In each case, collaborative efforts, careful planning, administrative support, and ample time were needed to implement such services. To tailor services based on the available resources, different approaches were taken, including structuring of services within oncology units; creation of an integrated partnership between oncology and palliative care departments; establishment of a multidisciplinary comprehensive service; and incorporation of nurse-based pain services to address acute, chronic, and cancer pain. These examples offer insights into how to optimize delivery of services in a variety of settings with varying resources. PMID:23520182

Marchetti, Paolo; Voltz, Raymond; Rubio, Carmen; Mayeur, Didier; Kopf, Andreas

2013-03-01

11

Treatment Approaches (Palliative Care)  

MedlinePLUS

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

12

Developing a successful palliative care service in an acute care setting.  

PubMed

Hospitalized patients with chronic illness require the same aggressive symptom management as those of hospice patients. Unfortunately, many individuals with chronic conditions require aggressive symptom management but they are not candidates for hospice admission. The authors discuss a palliative care service developed in a 371-bed community hospital to address this need. This consult service has improved patient care without draining hospital resources. PMID:18562832

Ross, Kay; Mathis, Sandy; Brockopp, Dorothy

2008-06-01

13

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

14

Palliative care - managing pain  

MedlinePLUS

Palliative care helps people with serious illnesses feel better. One of the problems a serious illness can cause ... Bookbinder M, McHugh ME. Symptom management in palliative care and ... Challenging pain problems. In: Walsh D, Caraceni AT, Fainsinger ...

15

Palliative Care in Cancer  

MedlinePLUS

... cancer.gov/cancertopics/factsheet/Support/hospice on the Internet. 6. Where do cancer patients receive palliative care? ... at http://www.getpalliativecare.org/providers on the Internet. The National Hospice and Palliative Care Organization’s Web ...

16

Developing a nurse led hospice outpatient clinic to improve palliative care services.  

PubMed

A team of palliative care clinical nurse specialists at the Phyllis Tuckwell Hospice in Farnham, Surrey, set up a hospice based outpatient clinic to improve services for patients with cancer. This article examines how the team used clinical audit, a staff questionnaire and patient feedback to evaluate the service and make recommendations for the future development of the clinic. PMID:20882827

Lawton, Catherine

17

Global Palliative Care Issues  

Microsoft Academic Search

\\u000a Palliative care for a patient is provided by an interdisciplinary team of health care professionals whose composition and\\u000a roles may vary but whose goal is to provide whole person care. Traditional research and evidence-based practice is an exciting\\u000a but very new development in palliative care. Therefore, research into the best practice in palliative care faces many unique\\u000a challenges. Grief is

Marissa Slaven

18

Making a case: creating a perinatal palliative care service using a perinatal bereavement program model.  

PubMed

This article explores the innovative approach of creating a perinatal palliative care service in an institution that already has a perinatal bereavement program. The proposed model focuses on the importance of establishing and maintaining relationship among and between nurses, other clinicians, and parents. The authors examine theoretical and clinical perspectives, recognizing the presence of both grief and hope from the moment of a life-threatening fetal diagnosis. The article identifies key program development processes, potential barriers, and practical implementation strategies as methods to ensure the delivery of seamless perinatal palliative care from diagnosis, through pregnancy, delivery, and the baby's living and dying. PMID:21311267

Kobler, Kathie; Limbo, Rana

2011-01-01

19

Palliative Care Education and  

E-print Network

of approximately 5,000­11,000 physicians to meet existing palliative care needs; this deficit is likely to increase. The American Academy of Hospice and Palliative Medicine states that, "students graduating from medical school, communication skills, and care coordination for patients with serious or life-threatening illness." As a result

Goodrich, Lisa V.

20

"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

21

Spirituality and Palliative Care  

PubMed Central

This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical) choices people make, respect their own conscience and worldview too and cultivate conscious compassion. PMID:21811369

Broeckaert, Bert

2011-01-01

22

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.

2014-01-01

23

[Loan of services developing palliative care skills based on the apprentice model].  

PubMed

For over 25 years, the Maison Michel-Sarrazin, a private palliative care institution in the Quebec City region, has had an original agreement with other establishments in the healthcare network (hospitals, long-term residential centres and CLSCs), in the form of the loan of nursing services. Based on the findings of a study as part of a research program, this article describes the loan of nursing services and qualitatively assesses its effects on the development of nurses' palliative care skills. An evaluative descriptive approach based on two conceptual frameworks (Giddens; Patton) was used to compile the views of 79 players. The findings demonstrate the innovative nature of the loan of nursing services and its considerable influence on the development of nursing skills, thanks to training based on the apprenticeship model (learning through observation and imitation), and on nursing practice at the Maison Michel-Sarrazin. Nevertheless, the controversy surrounding training using the apprenticeship model and the lack of recognition of this training on the part of the lending institutions raise questions despite the general satisfaction with the loan of nursing services. PMID:19266788

Dallaire, Clémence; Audet, Geneviève; L'Heureux, Michel; Saint-Laurent, Louise; Fillion, Lise; Morin, Diane; Dubé, Nathalie

2008-01-01

24

Specialized palliative care services are associated with improved short- and long-term caregiver outcomes  

Microsoft Academic Search

Goals of work  The goal of this study was to evaluate, at a population level, the association between specialized palliative care services\\u000a (SPCS) and short- and long-term caregiver outcomes.\\u000a \\u000a \\u000a \\u000a Patients and methods  The Health Omnibus Survey, a face-to-face survey conducted annually in South Australia since 1991, collects health-related\\u000a data from a rigorously derived, representative sample of 4,400 households. This study included piloted

Amy P. Abernethy; David C. Currow; Belinda S. Fazekas; Mary A. Luszcz; Jane L. Wheeler; Maragatha Kuchibhatla

2008-01-01

25

Visioning for secondary palliative care service hubs in rural communities: a qualitative case study from British Columbia's interior  

Microsoft Academic Search

BACKGROUND: As the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are

Valorie A Crooks; Heather Castleden; Nadine Schuurman; Neil Hanlon

2009-01-01

26

Extending specialist palliative care to all?  

Microsoft Academic Search

How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five

David Field; Julia Addington-Hall

1999-01-01

27

Practical Aspects of Palliative Care  

E-print Network

Practical Aspects of Palliative Care Course Directors September 4­6, 2014 Harvard Medical School and Harvard Medical School Center for Palliative Care Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care Attendance is limited to 120 participants. Register early! Guest Faculty Eva H

Goodrich, Lisa V.

28

Palliative Care Hospitalists and Intensivists  

E-print Network

Palliative Care for Hospitalists and Intensivists Course Directors Thursday­Saturday | April 3­5, 2014 Harvard Medical School and Harvard Medical School Center for Palliative Care Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care Attendance is limited to 120 participants

Goodrich, Lisa V.

29

The Program in Palliative Care  

E-print Network

;NickNixon Medicine and Nursing Need Leaders in Palliative Care Education Only 60% of hospitals have,000­11,000 physicians to meet existing palliative care needs; this deficit is likely to increase. The literature showsThe Program in Palliative Care Education and Practice April 17-24 and November 7-13, 2012 Provided

Datta, Sandeep Robert

30

Palliative Care Hospitalists and Intensivists  

E-print Network

to deal with challenging palliative and end-of-life situations in the hospital. Guest Faculty David Bates and skills needed to offer high-quality, specialist-level palliative care to inpatients with life Council of Graduate Medical Education competencies: · Patient care: Palliative care is compassionate

Chou, James

31

Integrating Palliative Care in Oncology  

PubMed Central

The provision of comprehensive cancer care in an increasingly complex landscape necessitates that oncology providers familiarize themselves with the application of palliative care. Palliative care is a learnable skill. Recent endeavors in this arena have demonstrated that providing palliative care is part and parcel with providing compassionate and high-quality cancer care, specifically as it pertains to physical and emotional outcomes for patients and their caregivers alike. The basic tenets of providing palliative care emphasize: frequent and honest communication, routine and systematic symptom assessment, integration of spiritual assessments, and early integration of specialized hospice and palliative care resources as a patient’s circumstances evolve. This article will endeavor to review and synthesize recent developments in the palliative care literature, specifically as they pertain to the oncologist as a primary palliative care provider. PMID:24051609

Rangachari, Deepa; Smith, Thomas J.

2014-01-01

32

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.

Moon, Paul J

2013-01-01

33

Palliative care and pulmonary rehabilitation.  

PubMed

Numerous barriers exist to the timely introduction of palliative care in patients with advanced chronic obstructive pulmonary disease (COPD). The complex needs of patients with advanced COPD require the integration of curative-restorative care and palliative care. Palliative care and pulmonary rehabilitation are both important components of integrated care for patients with chronic respiratory diseases. Pulmonary rehabilitation provides the opportunity to introduce palliative care by implementing education about advance care planning. Education about advance care planning addresses the information needs of patients and can be an effective strategy to promote patient-physician discussion about these issues. PMID:24874135

Janssen, Daisy J A; McCormick, James R

2014-06-01

34

Pediatric palliative care consultation.  

PubMed

Pediatric palliative care (PPC) is a relatively new and quickly growing pediatric subspecialty. It is generally provided using a consultative model, and is available in most specialized pediatric hospitals. This article discusses PPC consultation with specific focus on the added value of PPC, elements of a PPC consultation, and challenges to and opportunities for PPC consultation. Ongoing research, current publication, expert opinion, and institutional experience were compiled for this article. PMID:25084721

Moore, Dominic; Sheetz, Joan

2014-08-01

35

Who benefits from Palliative Care? Anyonewhohasaseriousillnessaffecting  

E-print Network

Who benefits from Palliative Care? ·Anyonewhohasaseriousillnessaffecting,physician'sassistants,nurses,social workersandchaplains.Thisteamworkswith yourdoctortoprovidethebestpossiblecare. What can I expect from Palliative Care.Itisbestintroducedearly,alongside curativetreatment. Is Palliative Care the same as hospice care? No

Goldman, Steven A.

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.

Escutia Gutierrez, Raymundo; Cortez Alvarez, Cesar R.; Alvarez Alvarez, Rosa M.; Flores Hernandez, Jorge LV.; Gutierrez Godinez, Jessica; Lopez Y Lopez, Jose G.

37

Practical Aspects of Palliative Care  

E-print Network

the informa- tion and skills needed to provide high quality, specialist-level palliative care to patients problems encountered in end-of-life care. Who Should Attend? We invite all physicians, nurses, and allied, participants will develop a toolbox of palliative care competencies and will learn from colleagues facing

Chou, James

38

Palliative sedation as part of a continuum of palliative care.  

PubMed

Three issues seem to animate those who advocate the move toward a broad allowance of physician-assisted death. The first is the supposed failure of palliative care in extreme cases. We challenge the notion that palliative care ever fails. When palliative sedation is understood to be a routine continuation of palliative care, as opposed to a last-ditch response to a dramatic failure, then palliative care will never fail. The second focuses on helping patients maintain a sense of control in their final days and hours. We believe that continued intimate involvement in each of the final stages that is essential in the palliative care-palliative sedation continuum will be more effective palliative care and still grant control to the patient under the principle of respect for autonomy. The third issue is the charge that palliative sedation is a euphemism for physician-assisted death. We reject that charge. PMID:18370896

Carr, Mark F; Mohr, Gina Jervey

2008-01-01

39

Patient Reports of Symptoms and Their Treatment at Three Palliative Care Projects Servicing Individuals with HIV\\/AIDS  

Microsoft Academic Search

Self-reports of 32 symptoms and their treatments were obtained from patients of three palliative care programs that provide services to seriously ill HIV patients (?95% AIDS) in Alabama (n=47), Baltimore (n=91), and New York City (n=117). On average, patients reported 10.9 (SD=7.6) to 12.7 (SD=6.2) symptoms. Pain, lack of energy, and worrying were reported by a majority of patients at

Daniel Karus; Victoria H. Raveis; Carla Alexander; Barbara Hanna; Peter Selwyn; Katherine Marconi; Irene Higginson

2005-01-01

40

Palliative Care Hospitalists and Intensivists  

E-print Network

needed to offer high quality palliative care to inpatients with life-threatening illnesses. Hospitalists and intensivists will acquire a toolbox of key competencies required to deal with challenging end-of-life: patient care, medical knowledge, practice-b

Paulsson, Johan

41

Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage. A national study using spatial analysis  

PubMed Central

Background A range of health outcomes at a population level are related to differences in levels of social disadvantage. Understanding the impact of any such differences in palliative care is important. The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. Methods All inpatient and community palliative care services nationally were geocoded (using postcode) to one nationally standardised measure of socio-economic deprivation – Socio-Economic Index for Areas (SEIFA; 2006 census data). Referral to palliative care services and characteristics of referrals were described through data collected routinely at clinical encounters. Inpatient location was measured from each person’s home postcode, and stratified by socio-economic disadvantage. Results This study covered July – December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a person’s home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. Conclusion These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge. PMID:23176397

2012-01-01

42

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar  

PubMed Central

Background Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings. PMID:23617814

2013-01-01

43

Palliative care in the patient-centered medical home.  

PubMed

There are few published data on the delivery of palliative care services in the outpatient setting and virtually none on either the integration of palliative care into primary care practice or its applicability to innovative models of health care delivery, such as the patient-centered medical home and accountable care organizations. In this article, new topics for health services delivery research are suggested. Because of the lack of data, the article draws on information collected from inpatient palliative care delivery and includes anecdotal experiences from the outpatient pain medicine and palliative care clinic of an academic department of family medicine. PMID:23148955

Wallenstein, David J

2012-12-01

44

Team Networking in Palliative Care  

PubMed Central

“If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

Spruyt, Odette

2011-01-01

45

Team networking in palliative care.  

PubMed

"If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

Spruyt, Odette

2011-01-01

46

Situational Analysis of Palliative Care Education in Thai Medical Schools  

PubMed Central

Objective The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. Methods A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. Results An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. Conclusions The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.

Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak

2013-01-01

47

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

48

Incorporating palliative care into primary care education  

Microsoft Academic Search

Summary  The confluence of enhanced attention to primary care and palliative care education presents educators with an opportunity\\u000a to improve both (as well as patient care) through integrated teaching. Improvements in palliative care education will have\\u000a benefits for dying patients and their families, but will also extend to the care of many other primary care patients, including\\u000a geriatric patients and those

Susan D. Block; George M. Bernier; LaVera M. Crawley; Stuart Farber; David Kuhl; William Nelson; Joseph O’Donnell; Lewis Sandy; Wayne Ury

1998-01-01

49

PALLIATIVE CARE FOR PATIENTS WITH ADVANCED CANCER  

PubMed Central

The increasing life expectancy in Saudi Arabia will be accompanied by an alteration of the patterns of disease similar to that in Western countries. One of these will be cancer, the second leading cause of death in the west at present, where 1:3 people develop cancer during their lifetime and 1:4 die of it. Cancer deaths are rarely easy. The distress particularly the pain it can cause is legendary. Palliative care is the care and study of patients with active progressive far advanced disease, where cure is impossible, the prognosis predictably short, and the focus of care is the patient's quality of life. A Palliative Care Program has been developed at KFSH&RC, since 1991. This has broadened the spectrum of health services available to cancer patients. Palliative care needs to be more widely available in the kingdom to relieve an important cause of human suffering. PMID:23008572

Gray, Alan; Ezzat, Adnan

1997-01-01

50

Evidencing cost efficiencies in specialist palliative care.  

PubMed

In this difficult economic climate there is an increasing need in health care not only to measure improvements in quality of care but also to evidence cost efficiencies in services. Although specialist palliative care (SPC) has historically been viewed as synonymous with provision of quality care for patients, this seems unlikely to be viewed in the future as an inherent guarantee of optimum efficiency. It looks as though the SPC fraternity is going to have to quantify its value for money. PMID:22240737

Mula, Carole; Raftery, Anne-Marie

2011-12-01

51

Policy analysis: Palliative care in Ireland.  

PubMed

Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation. PMID:23932413

May, Peter; Hynes, Geralyn; McCallion, Philip; Payne, Sheila; Larkin, Philip; McCarron, Mary

2014-03-01

52

Palliative Care: What You Should Know  

MedlinePLUS

Palliative Care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It is ... life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, ...

53

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; DeMers, Shaune; Vig, Elizabeth

2014-08-01

54

Mapping the literature: palliative care within adult and child neurology.  

PubMed

Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding palliative care within general neurology and child neurology. A literature review was conducted examining use of palliative care within child neurology. More than 100 articles and textbooks were retrieved and reviewed. Expert guidelines stress the importance of expertise in palliative care among neurologists. Subspecialties written about in child neurology include that of peripheral nervous system disorders, neurodegenerative diseases, and metabolic disorders. Adult and child neurology patients have a great need for improved palliative care services, as they frequently develop cumulative physical and cognitive disabilities over time and cope with decreasing quality of life before reaching the terminal stage of their illness. PMID:24717986

Dallara, Alexis; Meret, Anca; Saroyan, John

2014-12-01

55

Find a Hospice or Palliative Care Provider  

MedlinePLUS

... Name: Organization Type: Hospice Multi-Location Hospice Provider Palliative Care Provider or Sitemap Contact Us Privacy Informacion en Español Copyright National Hospice and Palliative Care Organization 1731 King Street, Suite 100 Alexandria, Virginia ...

56

Palliative care and neurology: time for a paradigm shift.  

PubMed

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

2014-08-01

57

The Diverse Landscape of Palliative Care Clinics  

PubMed Central

Abstract Background Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Objective Our objective was to obtain in-depth information about palliative care clinics. Methods We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Results Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked “pain management” and “determining goals of care” as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Conclusions Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices must plan for increased staffing and develop a sustainable financial model. PMID:23662953

Thai, Julie N.; Bakitas, Marie A.; Meier, Diane E.; Spragens, Lynn H.; Temel, Jennifer S.; Weissman, David E.; Rabow, Michael W.

2013-01-01

58

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.

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

2013-01-01

59

Public awareness and attitudes toward palliative care in Northern Ireland  

PubMed Central

Background The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. Results A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. Conclusions Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care. PMID:24044631

2013-01-01

60

Pediatric End-of-Life Issues and Palliative Care  

PubMed Central

Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information. PMID:18438449

Michelson, Kelly Nicole; Steinhorn, David M.

2007-01-01

61

Exhaustion syndrome in palliative care  

Microsoft Academic Search

Exhaustion syndrome is a potential risk for palliative-care workers and families because of their special contact with suffering. In this article we review its manifestations, the ways it affects every member of the team and other carers. It is possible to prevent it through an early recognition of job stress and the developing of strategies of self-control. It can be

Wilson Astudillo; Carmen Mendinueta

1996-01-01

62

Palliative health care: ancient wisdom.  

PubMed

An ancient story from Bhagavata Purana may be relevant to the psychology and spirituality of palliative care in modern medicine. This article brings an ancient Indian story that people still use during the grieving process. Symbolism of the old story is explained in a modern perspective. PMID:22811211

Mehta, Jay

2013-08-01

63

Pediatric palliative care: starting a hospital-based program.  

PubMed

The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success. PMID:22132573

Schmidt, Kaye

2011-01-01

64

Palliative Care Questions and Answers (Hospice Care Comparison)  

MedlinePLUS

Question Palliative Care Hospice Care Who can receive this care? Anyone with a serious illness, regardless of life expectancy, can receive palliative care Someone with an illness with a life expectancy ...

65

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

66

End of life care: a discursive analysis of specialist palliative care nursing  

Microsoft Academic Search

End of life care: a discursive analysis of specialist palliative care nursing Aim. The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. Background.

Julie K. Skilbeck; Sheila Payne

2005-01-01

67

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

68

Paediatric Palliative Care: Theory to Practice  

PubMed Central

Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice. PMID:21811373

Muckaden, Maryann; Dighe, Manjiri; Balaji, PD; Dhiliwal, Sunil; Tilve, Prajakta; Jadhav, Sunita; Goswami, Savita

2011-01-01

69

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

E-print Network

Department of Palliative Care, Policy & Rehabilitation School of Medicine at Guy's, King's College in Patients with Chronic Heart Failure 7 2.1.6 Improving Care and Services in Primary Palliative Care 7 2 and Culture 21 2.4.4 Better Palliative Care for Older People 21 3 Policy, Guidelines and Needs Assessments 23

Kühn, Reimer

70

[The main missions of the National Palliative Care Resource Centre].  

PubMed

The French National Palliative Care Resource Centre (CNDR) provides people impacted by the end of life, death and bereavement with a range of constantly evolving services. Spreading the palliative approach in order to enable everyone to benefit from it and appropriate it constitutes the main mission of the CNDR. PMID:22003798

Doré-Pautonnier, Delphine; Baussant-Crenn, Camille; Frattini, Marie-Odile; Mino, Jean-Christophe; Rennesson, Marina

2011-09-01

71

Music therapy in palliative care.  

PubMed Central

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

Munro, S.; Mount, B.

1978-01-01

72

Palliative Care through International Collaboration and  

E-print Network

care and have the tools for audit Survey of 48 end-of-life HIV care programs in SSA1 Priorities at Wits Palliative Care Goring D & Panatovic B at South Coast Hospice Mas.csi.kcl.ac.uk WHO Collaborating Centre for Palliative Care & Older People #12;www.csi.kcl.ac.uk Outline � Need

Kühn, Reimer

73

You are invited to take part in a research project called OPTCare Elderly `Optimising palliative care for older people in community  

E-print Network

Principal Investigator Clinical Lecturer in Palliative Care Professor of Palliative Care & Policy Clinical Nurse Specialist Palliative Care Honorary Consultant Palliative Care Patient/carer PIS phase 2 09-Oct with frailty could benefit from a new service with a specialist palliative care team providing an extra layer

Kühn, Reimer

74

The imperative for hospital-based palliative care: patient, institutional, and societal benefits.  

PubMed

Challenges in societal demographics, finances, and human suffering are pushing us towards a new paradigm in health care delivery. The palliative care paradigm is a necessary complement to existing acute care and chronic care paradigms. Palliative care does not replace prior paradigms; instead, it adds value and provides a shift in focus when appropriate. Baylor University Medical Center has all of the components needed for an effective palliative care program, including expertise in palliative medicine, pain management, ethics, geriatrics, oncology, other medical specialties, nursing, social work, and pastoral care. The palliative care consultation service will enhance patient care and improve financial performance in patients with serious life-limiting illnesses. PMID:16200109

Fine, Robert L

2004-07-01

75

Department of Palliative Care and Policy Guy's, King's and St Thomas' School of Medicine  

E-print Network

Department of Palliative Care and Policy Guy's, King's and St Thomas' School of Medicine King Supporting informal carers in palliative care: The 90 Minute Group 17 2.1.5 Publications 18 2.2 NON 2000 - 2003 28 2.2.4 IN FOCUS Developing and evaluating a palliative care service for people affected

Kühn, Reimer

76

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.

77

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

78

Palliative care work, between death and discharge.  

PubMed

This paper discusses a small study that was undertaken in a palliative care unit (PCU) to demonstrate reasons for the lengthy patient turnover time after the death of a patient. The study arose from a managerial challenge about the PCU's efficiency in comparison to other settings of care. While palliative care services in Australia are loosely funded on a per diem rate, casemix funding models for inpatient services in other settings reward efficiency in terms of length of stay (1). The aim of the study was to undertake a post-death survey, from the nursing perspective, of activities and the time required to deliver follow-up care, as required, to the deceased patient and his/her family. Details of the post-death episode for all patients who died in the PCU over two time periods were collected using a newly designed tool. This paper does not argue for the incorporation of post-death nursing work as a measure of efficiency or quality; rather, it is a demonstration of the type of work and the time involved in carrying out post-death work. This nursing work is an essential but hidden and generally unacknowledged element of palliative care and, not surprisingly, there is a dearth of literature describing the role of the nurse in providing care of the family and others after the patient has died. This project has provided important information about the factors that protract after-death care, and gives some insight into the role of the nurse after a death occurs in a PCU. PMID:16114808

O'Connor, Margaret; Peters, Louise; Lee, Susan; Webster, Cecilia

2005-01-01

79

Palliative care of First Nations people  

PubMed Central

ABSTRACT OBJECTIVE To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members. DESIGN Phenomenologic approach using qualitative in-depth interviews. SETTING A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients. PARTICIPANTS Ten recently bereaved aboriginal family members. METHODS Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness. MAIN FINDINGS First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences. CONCLUSION Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care. PMID:19366951

Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris

2009-01-01

80

Aufnahmeordnung fr den weiterbildenden Masterstudiengang ,,Palliative Care" der Universitt Bremen  

E-print Network

Aufnahmeordnung f�r den weiterbildenden Masterstudiengang ,,Palliative Care" der Universit�t Bremen Masterstudiengang ,,Palliative Care" in der nachstehenden Fassung genehmigt. � 1 Aufnahmevoraussetzungen und -verfahren (1) Aufnahmevoraussetzungen f�r den weiterbildenden Masterstudiengang ,,Palliative Care" mit einem

Bremen, Universität

81

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

82

The evolution of palliative care.  

PubMed

An encounter with one patient in 1948 was the catalyst for the Hospice Movement. The challenge to undertake appropriate pain and symptom control together with experience in further listening to patients in the small number of homes especially planned for dying people, finally came together during the 1960s as the impetus for the first modern hospice which opened in 1967. Since then, palliative care has been developing worldwide and has shown that the basic principles demonstrated in those early years can be interpreted in various cultures and with different levels of resources. Symptom control by a multi-professional team backed by research and education of both professionals and public has spread both into home care and into general hospitals. The family is seen as the unit of care as it finds its own potential, searches for meaning and makes the achievements possible at the end of life. PMID:10900362

Saunders, C

2000-08-01

83

The current status of palliative care in Cyprus: has it improved in the last years?  

PubMed

The oncology and palliative care services in Cyprus were reviewed looking especially on changes that occurred recently. Although there are encouraging signs in the management of palliative care patients, there is still room for improvement. Especially efforts should be made to improve communication between hospitals and palliative care organizations. The Ministry of Health should also take the initiative to get all palliative care organizations to work together under an official body and integrate palliative care into mainstream health service provision and education. PMID:21448034

Malas, Simon

2011-04-01

84

Ethical dilemmas in hospice and palliative care  

Microsoft Academic Search

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or

Barry M. Kinzbrunner

1995-01-01

85

[Use of music in palliative care].  

PubMed

Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques allow the diversity of objectives in treating patients such as reducing anxiety and stress, relaxation, pain control, reducing confusion spiritual, emotional expression, experience, self-awareness, encourage creative expression, causing mood swings - emotional, cognitive and behavioral, inducing the patient's imagination, enabling patient's chronological classification of life experiences, and the elaboration of unresolved pain, sorrow or errors. Adequate selection and use of musical techniques in palliative care in the service of achieving the best possible quality of life for patients at the end of life. PMID:22994012

Skrbina, Dijana; Simunovi?, Dubravka; Santek, Vjerocka; Njegovan-Zvonarevi?, Tatjana

2011-12-01

86

Overcoming Recruitment Challenges in Palliative Care Clinical Trials  

PubMed Central

Purpose: Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research—especially participant recruitment—is difficult. Major barriers include (1) patient factors, (2) “gatekeeping,” and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. Patients and Methods: The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of “social marketing,” an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. Results: From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Conclusion: Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing–based protocol shows the benefits of such an approach. PMID:24130254

LeBlanc, Thomas W.; Lodato, Jordan E.; Currow, David C.; Abernethy, Amy P.

2013-01-01

87

Palliative care for children with cancer.  

PubMed

Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome. PMID:23337915

Waldman, Elisha; Wolfe, Joanne

2013-02-01

88

Training Advanced Practice Palliative Care Nurses.  

ERIC Educational Resources Information Center

Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)

Sherman, Deborah Witt

1999-01-01

89

ACT--for pediatric palliative care.  

PubMed

There are approximately 400,000 children living in America with life-threatening conditions, and every year approximately 55,000 children die. Many of these children suffer at the time of their death due to lack of aggressive symptom management. While curative medicine is always the primary goal of treatment, there may come a time when parents must choose another option of care for their child. Aggressive Comfort Treatment (ACT) is the option that will make the difference in the life and loss of a child. ACT proposes aggressive symptom management with attention to psychosocial and spiritual needs. Allowing the individual and family to have a voice in the dying process, palliation is pursued just as aggressively as cure once was. In support of ACT, the American Academy of Pediatrics (AAP) recommends the development and broad availability of pediatric palliative care services (AAP, 2007). Promoting life enhancement rather than life extension, ACT will have a monumental impact on the care of a dying child. PMID:18196718

Calabrese, Carrie Lynn

2007-01-01

90

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

91

The Australian Palliative Care Outcomes Collaboration (PCOC)--measuring the quality and outcomes of palliative care on a routine basis.  

PubMed

Australia is leading the way in establishing a national system (the Palliative Care Outcomes Collaboration - PCOC) to measure the outcomes and quality of specialist palliative care services and to benchmark services across the country. This article reports on analysis of data collected routinely at point-of-care on 5939 patients treated by the first fifty one services that voluntarily joined PCOC. By March 2009, 111 services have agreed to join PCOC, representing more than 70% of services and more than 80% of specialist palliative care patients nationally. All states and territories are involved in this unique process that has involved extensive consultation and infrastructure and close collaboration between health services and researchers. The challenges of dealing with wide variation in outcomes and practice and the progress achieved to date are described. PCOC is aiming to improve understanding of the reasons for variations in clinical outcomes between specialist palliative care patients and differences in service outcomes as a critical step in an ongoing process to improve both service quality and patient outcomes. PMID:20497731

Eagar, Kathy; Watters, Prue; Currow, David C; Aoun, Samar M; Yates, Patsy

2010-05-01

92

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

93

Review article: palliative care in gynecologic oncology.  

PubMed

Patients with advanced gynecologic malignancies have a multitude of symptoms; pain, nausea, and vomiting, constipation, anorexia, diarrhea, dyspnea, as well as symptoms resulting from intestinal obstruction, hypercalcemia, ascites, and/or ureteral obstruction. Pain is best addressed through a multimodal approach. The optimum palliative management of end-stage malignant intestinal obstruction remains controversial, with no clear guidelines governing the choice of surgical versus medical management. Patient selection for palliative surgery, therefore, should be highly individualized because only carefully selected candidates may derive real benefit from such surgeries. There remains a real need for more emphasis on palliative care education in training programs. PMID:21187291

Rezk, Youssef; Timmins, Patrick F; Smith, Howard S

2011-08-01

94

Palliative care education: a global imperative  

Microsoft Academic Search

\\u000a Palliative care has primarily addressed the needs of patients with cancer during their last days of life. Indeed, in one country,\\u000a it is mandated that formal hospice programs can only enroll patients who are expected to die within 6 months. The model wherein\\u000a palliative care works only with cancer patients and their families towards the end of the patients’ existence

Neil MacDonald

95

Delivery systems of veterinary hospice and palliative care.  

PubMed

There is great flexibility in how palliative medicine and hospice care can be delivered to pet owners. The veterinarian needs to develop a plan based on the professional's individual preferences. Variations in the services that are offered, the location of where the services are delivered, and the composition of the professional team will vary with the veterinarians preferences. Marketing and legal issues must be addressed when considering to offer palliative and hospice care. An organizational worksheet is provided at the end of this article to help with planning. PMID:21601742

Shearer, Tamara S

2011-05-01

96

[Neonatal palliative care and culture].  

PubMed

The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. PMID:23896086

Bétrémieux, P; Mannoni, C

2013-09-01

97

Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic.  

PubMed

The National Service Framework for Renal Services Part 2 identifies quality requirements for end-of-life care for individuals with kidney failure, recognizing the potential to forge closer relationships between renal and specialist palliative care providers. This article describes a pilot project set up by two Clinical Nurse Specialists, one working in hospice specialist palliative care and the other in renal palliative care within an acute trust. The purpose of the pilot was to work in collaboration to run a streamlined nurse-led clinic that would meet the palliative care needs of chronic kidney disease (CKD) Stage 5 patients and their carers. To achieve this the clinic would have to provide optimal symptom management, empower patients to make their own choices, and support them with advance care planning underpinned by the End of Life Care Strategy. The partnership also aimed to promote service improvement and practice development using transference of knowledge, skills, and expertise. Initial informal feedback, including a very small patient survey, suggests that the clinic was well received by patients, carers, and other health professionals. The clinic is ongoing and deserves more formal evaluation to encourage future service development. PMID:21278673

Harrison, Kerry; Watson, Sarah

2011-01-01

98

Respect for persons, autonomy and palliative care.  

PubMed

This paper explores some of the values that underpin health care and how these relate more specifically to the values and ethics of palliative care. The paper focuses on the concept of autonomy because autonomy has emerged as a foundational concept in contemporary health care ethics and because this is an opportunity to scratch the surface of this concept in order to reveal something of its complexity, a necessary precaution when applying the concept to the context of palliative care. The paper begins with a theoretical discussion of autonomy exploring an aspect of its contemporary meaning and relevance to health care. The second part of the paper focuses more closely on how the principle of respect for autonomy can be applied in the context of palliative care. In this section an ethical framework is employed to explore a practical application of this principle within a broader context of respect for persons. PMID:16215803

Woods, Simon

2005-01-01

99

Pediatric Palliative Care: A Reflection on Terminology  

PubMed Central

The definition of palliative care is the cornerstone of a medical subspecialty that plays a particular role for all who need it, for all who practice it, and increasingly for those who try to understand it. The difficulties around the definition and terminology arise from problems in separating it from other concepts such as supportive care, constructs such as “palliative care is only about dying”, or, in children, the rather vague use of terms like life-threatening and life-limiting diseases. These weaknesses have been recognized and important steps have been taken. This review discusses current definitions as well as efforts to overcome their weaknesses and make the term palliative care—for both children and adults—more intelligible.

Bergstraesser, Eva

2013-01-01

100

Palliative Care Nursing Interventions in Thailand  

PubMed Central

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

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

2013-01-01

101

Palliative Care Enrichment in Geropsychology Fellowships.  

ERIC Educational Resources Information Center

Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)

Strauss, Gerald; Nelson, Barbara J.

1996-01-01

102

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

103

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

104

Evaluation of the Palliative Care Partnership: a New Zealand solution to the provision of integrated palliative care  

Microsoft Academic Search

Aims This study reports an external evaluation of a funded model of integrated palliative care the Palliative Care Partnership . Care is delivered by a partnership between palliative care coordinators (augmented by specialist hospice clinicians), general practitioners, practice nurses, and supported by community district nurses. Mandatory induction clinician education and other support is a prerequisite. Methods A mixed method approach

Eileen McKinlay; Lynn McBain

2007-01-01

105

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

106

[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

107

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

108

An Efficient Hybrid Classification Algorithm -an Example from Palliative Care  

E-print Network

An Efficient Hybrid Classification Algorithm - an Example from Palliative Care Tor Gunnar Houeland this hybrid classification algorithm to predict the pain classification for palliative care patients for pain classification in palliative care [9]. Our domain is open and changing, which is why we study

Aamodt, Agnar

109

Distress, Stress and Solidarity in Palliative Care.  

ERIC Educational Resources Information Center

Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)

deMontigny, Johanne

1993-01-01

110

Outcome Measurement in Palliative Care The Essentials  

E-print Network

Outcome Measurement in Palliative Care The Essentials Bausewein C, Daveson B, Benalia H, Simon ST Van den Eynden, Paul Vanden Berghe,Trudie van Iersel. PRISMA also thanks Barbara Antunes, Steve Rumble, andVicky Robinson for their comments on an earlier version of this guidance. The development

Kühn, Reimer

111

Understanding self-awareness in palliative care.  

PubMed

Exploring the spiritual and psychological realms is more difficult than simply addressing the physical dimension of palliative care. Knowing oneself is essential to align one's work within the hospice philosophy. Giving and receiving love are equally important. This case study examines importance of self-awareness in managing escalating suffering at the end of life. PMID:24215586

Goswami, Dinesh Chandra

2013-12-01

112

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

Microsoft Academic Search

Our objective in this study was to summarize the relevant knowledge on depression in palliative care and to provide a framework for clinical, scientific and educational efforts at improving its management. The Research Steering Committee (RSC) of the European Association of Palliative Care (EAPC) established an Expert Working Group (EWG) to address the issue of depression in palliative care. Each

Friedrich Stiefel; Maria Die Trill; Alexandre Berney; Juan Olarte; Darius Razavi

2001-01-01

113

Euthanasia and Palliative Care in Belgium: The Attitudes of Flemish Palliative Care Nurses and Physicians Toward Euthanasia  

Microsoft Academic Search

Little research has been carried out to determine the attitudes of palliative care professionals to euthanasia. This research aimed to find out how Flemish palliative care nurses and physicians think about euthanasia. An anonymous questionnaire was sent to all physicians (147) and nurses (589) employed in palliative care teams and institutions in Flanders (Belgium). The questionnaire contained a demographic part,

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

2010-01-01

114

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation  

PubMed Central

Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

115

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

116

The impact of a palliative medicine consultation service in medical oncology  

Microsoft Academic Search

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients\\/outpatients referred to the Palliative Medicine Program in a 4-month period were enrolled. Data were collected at the initial consultation using standardized forms with spaces for: reason for the consultation, referring service, demographics and history,

Jade Homsi; Declan Walsh; Kristine A. Nelson; Susan B. LeGrand; Mellar Davis; Elias Khawam; Chadi Nouneh

2002-01-01

117

Current funding and financing issues in the Australian hospice and palliative care sector.  

PubMed

This article overviews current funding and financing issues in the Australian hospice and palliative care sector. Within Australia, the major responsibilities for managing the health care system are shared between two levels of government. Funding arrangements vary according to the type of care. The delivery of palliative care services is a State/Territory responsibility. Recently, almost all States/Territories have developed overarching frameworks to guide the development of palliative care policies, including funding and service delivery structures. Palliative care services in Australia comprise a mix of specialist providers, generalist providers, and support services in the public, nongovernment, and private sectors. The National Palliative Care Strategy is a joint strategy of the Commonwealth and States that commenced in 2002 and includes a number of major issues. Following a national study in 1996, the Australian National Subacute and Nonacute Patient (AN-SNAP) system was endorsed as the national casemix classification for subacute and nonacute care. Funding for palliative care services varies depending on the type of service and the setting in which it is provided. There is no national model for funding inpatient or community services, which is a State/Territory responsibility. A summary of funding arrangements is provided in this article. Palliative care continues to evolve at a rapid rate in Australia. Increasingly flexible evidence-based models of care delivery are emerging. This article argues that it will be critical for equally flexible funding and financing models to be developed. Furthermore, it is critical that palliative care patients can be identified, classified, and costed. Casemix classifications such as AN-SNAP represent an important starting point but further work is required. PMID:19615629

Gordon, Robert; Eagar, Kathy; Currow, David; Green, Janette

2009-07-01

118

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

119

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

120

Gabapentin for intractable hiccups in palliative care.  

PubMed

Intractable hiccups are not common in the general population or in the palliative care population but can adversely impact quality of life and cause other complications such as weight loss and sleep disturbance. Many treatments have been proposed for intractable hiccups, but there is little consensus regarding treatment in the medical literature. This is partly because hiccups are relatively uncommon and many of the proposed treatments are unproven or have long-term side effects. Pharmacologic treatments rather than home remedies or surgical treatments are more appropriate for the palliative care patient. Gabapentin is a promising medication for the treatment of intractable hiccups for its safety, lack of serious side effects, and rapid onset of action. Further research is indicated to determine whether gabapentin is consistently effective. PMID:18292481

Tegeler, Monica L; Baumrucker, Steven J

2008-01-01

121

'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

122

Palliative care in amyotrophic lateral sclerosis  

Microsoft Academic Search

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

Gian Domenico Borasio; Raymond Voltz

1997-01-01

123

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

124

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.

125

Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities.  

PubMed

Objective: To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service. Methods: Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation Results: Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received. Significance of the research: Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution. PMID:23782917

Wallerstedt, Birgitta; Andershed, Birgitta; Benzein, Eva

2013-06-20

126

Palliative Care and Hospice in Advanced Heart Failure  

PubMed Central

Advanced heart failure (HF) is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. Despite a growing body of evidence supporting the integration of palliative care into the overall care of patients with HF and some recent evidence of increased use, palliative therapies remain underused in the treatment of advanced HF. Review of the literature reveals that although barriers to integrating palliative care are not fully understood, difficult prognostication combined with caregiver inexperience with end-of-life issues specific to advanced HF is likely to contribute. In this review, we have outlined the general need for palliative care in advanced HF, detailed how palliative measures can be integrated into the care of those having this disease, and explored end-of-life issues specific to these patients. PMID:21875515

LeMond, Lisa; Allen, Larry A.

2013-01-01

127

The impact of an aging population on palliative care.  

PubMed

By 2050, it is predicted that 26% of the population will be aged 80 and over. Although older people have much to contribute, one challenging aspect of an aging population is the increasing rate of dementia. Palliative care is now included as part of the care pathway of a wide variety of nonmalignant diseases. The European Association for Palliative Care (EAPC) and the European Union Geriatric Medicine Society (EUGMS) have jointly called for every older citizen with chronic disease to be offered the best possible palliative care approach wherever they are cared for. This report is adapted from paineurope 2013; Issue 2, ©Haymarket Medical Publications Ltd., and is presented with permission. paineurope is provided as a service to pain management by Mundipharma International LTD. and is distributed free of charge to healthcare professionals in Europe. Archival issues can be accessed via the website: http://www.paineurope.com at which European health professionals can register online to receive copies of the quarterly publication. PMID:24303834

O'Brien, Tony

2013-12-01

128

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

129

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

130

Palliative care in patients with lung cancer.  

PubMed

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

Farbicka, Paulina; Nowicki, Andrzej

2013-01-01

131

Palliative care in patients with lung cancer  

PubMed Central

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

Farbicka, Paulina

2013-01-01

132

Dialysis Discontinuation and Palliative Care  

Microsoft Academic Search

Little attention has been accorded to the terminal course and end-of-life care of patients after dialysis discontinuation. This prospective cohort observational study involves six dialysis clinics in the United States and two clinics in Canada. Data were collected on 131 patients who were undergoing maintenance dialysis and died after treatment discontinuation. Seventy-nine of the patients (60%) were prospectively studied until

Lewis M. Cohen; Michael Germain; David M. Poppel; Anne Woods; Carl M. Kjellstrand

2000-01-01

133

An Exploratory Analysis of Pediatric Hospice and Palliative Care  

E-print Network

An Exploratory Analysis of Pediatric Hospice and Palliative Care Dialogue on Social Media Lisa C and referral information by pediatric clinicians caring for terminally ill children about a critical end-of-life 2 #12;Overview qArea of research interest in pediatric hospice/ palliative care. q

Wang, Xiaorui "Ray"

134

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

135

Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care  

PubMed Central

Objective Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. Data Sources We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. Data Extraction and Synthesis We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Conclusions Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and “culture” in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit. PMID:22080644

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

2012-01-01

136

Factors affecting recruitment to an observational multicentre palliative care study  

PubMed Central

Objectives To identify those factors which adversely affected recruitment to a large multicentre palliative care study. Methods Patient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility—did the patient fulfil the study entry criteria? (2) Accessibility—was it possible to access the patient to be able to inform them about the study? (3) Consent—did the patient agree to participate in the study? The reasons why patients were ineligible, inaccessible or refused consent were recorded. Results 12?412 consecutive referrals to participating clinical services were screened for study inclusion of whom 5394 (43%) were deemed to be ineligible. Of the remaining patients 4617/7018 (66%) were inaccessible to the research team. The most common reasons being precipitous death, ‘gatekeeping’ by clinical staff or rapid discharge. Of the 2410 patients who were visited by the research team and asked to participate in the study 1378 (57%) declined. Overall 8.2% (1018/12?412) of patients screened participated in the study. There were significant differences in recruitment patterns between hospice inpatient units, hospital support and community palliative care teams. Conclusions Systematic monitoring and analysis of patient flows through the clinical trial accrual process provided valuable insights about the reasons for failure to recruit patients to a clinical trial and may help to improve recruitment in future studies. PMID:24644750

Stone, Patrick C; Gwilliam, Bridget; Keeley, Vaughan; Todd, Chris; Kelly, Laura C; Barclay, Stephen

2013-01-01

137

An exploration of dignity in palliative care.  

PubMed

This paper presents a qualitative study exploring the meaning of 'dignity' to patients, relatives and professionals. It examines the impact of advanced illness and treatment and the issues pertinent to caring for dignity. Depth interviews were conducted with eight patients, six relatives and seven members of the multiprofessional team. A phenomenological approach to data analysis was adopted. Dignity was found to be a complex phenomenon. It is composed of the dimensions 'being human', 'having control', 'relationship and belonging' and 'maintaining the individual self'. These dimensions seemed to be held in equilibrium by each individual. The importance of each may alter in response to threats to dignity such as advancing illness and how one is treated within it, in an attempt to cope and adapt. Caring for dignity is challenging because it involves balancing the multiple needs of both users and providers of palliative care and the different perceptions and dimensions of dignity itself. PMID:12725480

Enes, Sylvia Patricia Duarte

2003-04-01

138

Enhancing Palliative Care Education in Medical School Curricula: Implementation of the Palliative Education Assessment Tool.  

ERIC Educational Resources Information Center

Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…

Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.

2002-01-01

139

European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion  

Microsoft Academic Search

BACKGROUND: The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. DISCUSSION: We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically

Niklas Juth; Anna Lindblad; Niels Lynöe; Manne Sjöstrand; Gert Helgesson

2010-01-01

140

Are Undergraduate Nurses Taught Palliative Care during Their Training?  

ERIC Educational Resources Information Center

Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…

Lloyd-Williams, Mari; Field, David

2002-01-01

141

The Multidisciplinary Team in Palliative Care: A Case Reflection  

PubMed Central

This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH), AIIMS, New Delhi. PMID:25125872

Bowen, Liza

2014-01-01

142

Palliative care in the past decade and today  

Microsoft Academic Search

The essence, principles, and philosophy of palliative care are timeless. However, the evolution of new concepts and the development of new therapeutic approaches have enhanced our ability to translate the principles of palliative care into practice. For example, new insights into the different pathways of action of the two variants of the cyclo-oxygenase enzyme may ultimately permit the development of

Robert G. Twycross

1999-01-01

143

Palliative care professionals' perceptions of nutrition and hydration at the end of life.  

PubMed

The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses' and doctors' perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers' distress at the non-provision of MNH; palliative care doctors' and nurses' position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse's and doctor's role is one of education and communication, involving a team approach to manage this difficult issue. PMID:18414339

van der Riet, Pamela; Good, Philip; Higgins, Isabel; Sneesby, Ludmilla

2008-03-01

144

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; Engljahringer, Kirsten

2014-01-01

145

Critical palliative care: intensive care redefined.  

PubMed

In the area of end-of-life bioethical issues, patients, families, and health care providers do not understand basic principles, often leading to anguish, guilt, and anger. Providers lack communication skills, concepts, and practical bedside information. Linking societal values of the sanctity of life and quality of life with medical goals of preservation of life and alleviation of suffering respectively provides an essential structure. Medical care focuses on cure when possible but when the patient is dying, the focus switches to caring for patients and their families. Clinicians need to learn how to balance the benefits and burdens of medications and treatments, control symptoms, and orchestrate withdrawal of treatment. Finally, all need to learn more about the dying process to benefit society, their own families, and themselves. PMID:11406456

Civetta, J M

2001-01-01

146

The challenges of providing palliative care for people with intellectual disabilities: a literature review.  

PubMed

People with intellectual disabilities are often marginalised from mainstream health-care services because of the complexities of their disability. They are under-referred to specialist palliative care owing to a limited understanding of its role and little collaborative working. Furthermore, professionals caring for people with intellectual disabilities and palliative care services often lack knowledge about and confidence in their ability to meet the needs of people with an intellectual disability who require palliative care. This literature review explores the challenges of providing palliative care for people with intellectual disability. It highlights that training requirements need to be effectively identified, referrals between professional groups made, and the perspectives of patients understood to overcome the marginalisation of people with intellectual disability. There is a need for ongoing staff development focusing on staff confidence, collaborative working between professionals, and the empowerment of people with intellectual disability to be involved in decisions about their end-of-life care. Further research is needed to examine the most effective way of capturing the perspectives of those with intellectual disability and of enabling people with intellectual disability to access and engage with health surveillance, cancer screening, and palliative care services. PMID:25040863

Dunkley, Susie; Sales, Rachel

2014-06-01

147

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

148

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

149

Palliative Care in Acute Care Hospitals  

Microsoft Academic Search

Changes in the demographics and healthcare needs of the U.S. population have forced a shift in the types of healthcare services\\u000a that people want and need. Hospitals are faced with the challenge of meeting the needs of an increasingly older and frailer\\u000a population. An American born in 2000 can expect to live to nearly 77 years old; a 65 years

Randy Hebert; Nicole Fowler; Robert Arnold

150

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

151

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

E-print Network

1 Research Department of Palliative Care, Policy & Rehabilitation, School of Medicine at Guy 12 Palliative Care in Neurology 12 In Focus - A trial of a new model of short term palliative care of antidepressants in physical illness and palliative care 17 Depression 18 Spasticity 19 2.4 Patient

Kühn, Reimer

152

Paramedics' perceptions of their role in palliative care: analysis of focus group transcripts.  

PubMed

Paramedics play an important role in out-of-hospital health care. They provide unscheduled care, assisting both patients with minor injuries and those experiencing life-threatening emergencies. Increasingly, paramedics are called on to manage chronic and complex health needs, including symptom relief for patients at the end of life. However, paramedics may not be well prepared to offer palliative care, as practice guidelines and education tend to focus on the management of acute medical emergencies and major trauma. Emergency medical services that employ paramedics rarely have practice guidelines or protocols that deal specifically with palliative care. PMID:22582470

Lord, Bill; Récoché, Katrina; O'Connor, Margaret; Yates, Patsy; Service, Melinda

2012-01-01

153

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

154

Palliative and Curative Care Nurses' Attitudes Toward Dying and Death in the Hospital Setting.  

ERIC Educational Resources Information Center

Examined sociodemographic background, nursing unit, amount of experience caring for dying patients, death anxiety, and attitudes toward working with dying patients among 56 nurses in palliative, surgical, and pediatric services. Work setting was found to be a more significant force in shaping attitudes toward caring for the dying than was…

Thompson, Edward H.

1986-01-01

155

A model of palliative care: the palliative medicine program of the Cleveland Clinic Foundation  

Microsoft Academic Search

Patients with advanced diseases, both cancer and noncancer, experience high symptom prevalence and psychosocial distress.\\u000a Multiple unmet needs in the physical, psychosocial and spiritual domains are common. In the United States, palliative medicine\\u000a is an emerging discipline that focuses on meeting these needs to achieve optimal quality of life for the patient–family unit.\\u000a The majority of palliative care programs in

Donna S. Zhukovsky; Harry R. Horvitz

2000-01-01

156

[Successful intervention of a Palliative Liaison Service in case of ethical conflicts].  

PubMed

In multiprofessional teams, the processes underlying ethical decisions in Palliative Care often become complicated and could cause many conflicts. Different interests and ethical positions often slow down the necessary decision-making. The lack of resources, lack of managerial structures and deficits in competence and education make the situation more difficult. We demonstrated in our case report that an established Palliative Liaison Service could support the creation of consensual decisions by forming multiprofessional ethic round-ups. PMID:16830243

Hannesschläger, Heinz; Kopp, Martin; Holzner, Bernhard

2006-05-01

157

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

158

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

159

Palliative care physicians' practices and attitudes regarding advance care planning in palliative care units in Japan: a nationwide survey.  

PubMed

To clarify physicians' practices and attitudes regarding advance care planning (ACP) in palliative care units (PCUs) in Japan, we conducted a self-completed questionnaire survey of 203 certificated PCUs in 2010. Ninety-nine physicians participated in the survey. Although most Japanese palliative care physicians recognized the importance of ACP, many failed to implement aspects of patient-directed ACP that they acknowledged to be important, such as recommending completion of advance directives (ADs), designation of health care proxies, and implementing existing ADs. The physicians' general preference for family-centered decision making and their feelings of difficulty and low confidence regarding ACP most likely underlie these results. The discrepancy between physicians' practices and their recognition of the importance of ACP suggests an opportunity to improve end-of-life care. PMID:24113194

Nakazawa, Kazuhiro; Kizawa, Yoshiyuki; Maeno, Takami; Takayashiki, Ayumi; Abe, Yasushi; Hamano, Jun; Maeno, Tetsuhiro

2014-11-01

160

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

161

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

162

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

MedlinePLUS

... can also help you deal with the side effects of the medical treatments you’re receiving. Perhaps, most important, palliative care can help improve your quality of life. 3 Palliative care is different from hospice care. ...

163

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

PubMed Central

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

2013-01-01

164

Pain and symptom control in paediatric palliative care.  

PubMed

Important differences become evident in a comparison of cancer pain between children and adults. Management of pain in children is commonly multidisciplinary, is less dependent on invasive measures and relies more on systemic therapy. Children are not little adults: their immaturity, developing cognition and dependence all influence their experience and interpretation of pain. Much progress has been made in altering practices such as under-prescribing and underdosing that have adversely affected adequate control of pain in children. The challenge for paediatric health care providers in the mid 1990s is not only to be informed of current practices in pain and symptom control in paediatric palliative care, but also to remember to establish those practices in day to day management. Even though pain and its effects in children are now better understood, it is often still not managed optimally. Good management of pain in children depends on accurate assessment. In the past 10 years, assessment of pain in children has advanced considerably. However, assessment of pain in the preverbal child is still inadequate and in need of attention. Sedation, tolerance and involuntary movements may occur as side effects of opioids in children and may cause significant problems in management of the dying child. Psychostimulants can diminish sedation to some extent, but there is little information as yet on the value of these drugs in children. Tolerance to opioids may develop quickly, leading to poor control of pain and distress for the child. Strategies to improve management of tolerance include use of regional anaesthetic techniques such as the epidural/intrathecal route for opioid administration. Involuntary movements induced by opioids are uncommon but have the potential to cause significant distress. The mechanisms underlying these side effects of opioids need to be established. Strategies are needed for the effective treatment and prevention of these side effects. Neuropathic pain can be severe, distressing and difficult to treat. Experience of its treatment in terminally ill children is limited. Effective use of tricyclic antidepressants and systemically administered local anaesthetics is still to be determined. Regional anaesthetic techniques may be of great benefit when neuropathic pain cannot be controlled with systemic therapy. Procedural pain is more common than pain related to disease in the management of paediatric cancer. Further research is needed to identify the best approach to its management. We have found nitrous oxide to be of great benefit in management of procedural pain in children. Non-pharmacological methods of treatment of pain in children, such as transcutaneous electrical nerve stimulation or acupuncture, may also be useful and should receive continuing evaluation. There are significant and current issues in paediatric palliative care besides management of pain. There are difficulties in the provision of home nursing care for children with cancer in the terminal phase of their illness, including lack of community nursing services at night and on weekends and lack of adequate home help for parents. Attitudes of staff involved in the care of the child and family and their commitment to working as a multidisciplinary team strongly influence the quality and success of care given. Pain control and palliative medicine are evaluable by measures of quality assurance or outcome, and adoption of such evaluations should improve standards of care. Euthanasia in children is even more difficult as an ethical dilemma than in adults. Optimum symptom control with current techniques should almost always obviate its consideration. We are opposed to euthanasia. Psychosocial and cultural issues all influence the family's experience of palliative care. Further research is necessary in all of these areas.(ABSTRACT TRUNCATED) PMID:8564995

Stevens, M M; Dalla Pozza, L; Cavalletto, B; Cooper, M G; Kilham, H A

1994-01-01

165

Collaborative Care in NSCLC; the Role of Early Palliative Care  

PubMed Central

The management of non-small cell lung cancer (NSCLC) has evolved into a multidisciplinary team approach that traditionally has involved medical oncology, radiation oncology, and thoracic surgery. However, in the era of personalized medicine the importance of molecular diagnostics requires adequate tissue for histologic subtyping and molecular testing and thus requires the engagement of other subspecialties such as pathology, respirology, and interventional radiology. Unfortunately in 2014, the majority of patients presenting with NSCLC will succumb to their disease and the early integration of palliative care into the treatment strategy will improve the quality of life and end-of-life care of our patients and may in fact improve their overall survival. PMID:25126538

Howe, Marnie; Burkes, Ronald L.

2014-01-01

166

Stories and the longitudinal patient relationship: what can clinical ethics consultants learn from palliative care?  

PubMed

A case of conflict in pediatric end-of-life decision making is presented to compare the complementary roles of clinical ethics consultants and palliative care specialists. The progression of the case illustrates the differing structures, goals, and methods of the majority of such teams. The strengths of each of consultation are emphasized. Particularly in centers where palliative care services are not available, it can be important for careproviders and clinical ethics consultants to focus on alliance-building and a longitudinal relationship with patients and families. PMID:23256402

Morrison, Wynne; Derrington, Sabrina F

2012-01-01

167

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

168

Evaluating palliative care: facilitating reflexive dialogues about an ambiguous concept.  

PubMed

Palliation is a relatively new concept that is used in connection with the integral care provided to those who are unable to recover from their illness. The specific meaning of the concept has not been clearly defined. This article explores the possibilities offered by a responsive approach to evaluation that can facilitate a reflexive dialogue on this ambiguous concept. In doing so it draws on a case study of a palliative care project in a Dutch health care authority. The article begins with an overview of the characteristics of a responsive approach to evaluation and addresses interpretative, representational and practical dilemmas. It goes on to present a series of dialogues between health professionals, informal caregivers, patients and evaluators. These dialogues take the form of juxtaposed stories, transcribed conversations and interpretations. Finally, the learning experiences are summarised and the appropriateness of the responsive approach to evaluate palliative care is discussed. PMID:11760226

Abma, T A

2001-01-01

169

Clinical trials in palliative care: an ethical evaluation.  

PubMed

On first sight, clinical trials do not seem to fit well within the concept of palliative care. In palliative care, the needs and wishes of the patient set the norm while participation in experimental trials is potentially harmful for the patient. The dilemma seems hard to solve as optimal care for the dying and improvement of treatment for future patients are both imperative. Yet, the one seems to exclude the other. However, on closer examination it becomes less evident that clinical trials in palliative care confront us with an unsolvable dilemma. Some patients' lives may gain meaning through participation in trials out of solidarity with future patients. In order to clarify this, the notions of authenticity and hope can be illuminative. PMID:10900367

Janssens, R; Gordijn, B

2000-08-01

170

Life is uncertain. death is certain. Buddhism and palliative care.  

PubMed

It is part of a palliative care assessment to identify patients' spiritual needs. According to Buddhism, suffering is inherent to all human beings. Advice on how suffering can be reduced in the course of serious illness might be helpful to patients with incurable and progressive diseases. Palliative care could benefit from Buddhist insights in the form of compassionate care and relating death to life. Buddhist teachings may lead to a more profound understanding of incurable diseases and offer patients the means by which to focus their minds while dealing with physical symptoms and ailments. This might not only be beneficial to followers of Buddhism but to all patients. PMID:22871512

Masel, Eva K; Schur, Sophie; Watzke, Herbert H

2012-08-01

171

Training mid-level providers on palliative care: bringing advanced directives and symptom assessment and management to community oncology practices.  

PubMed

Palliative care services are not available in most outpatient oncology practices. A program training 11 mid-level providers from oncology practices on advanced directive discussions and supportive symptom assessment and management performed by palliative care specialists was completed. A follow-up session 9 months later identified barriers to implementation. Of the 11 mid-level providers, 8 participated in the follow-up session, and 9 of the 11 providers implemented advanced directive's discussions and symptom assessment and management for patients with metastatic cancer. Main barriers included uncertainties about reimbursement, patients' lack of knowledge about palliative care, and lack of access to supportive services. This program successfully promoted advanced directive discussions and supportive/palliative care symptom assessment and management to community oncology practices, which will hopefully translate into improved quality of life for patients with metastatic cancer. PMID:23616274

Lesperance, Mary; Shannon, Robert; Pumphrey, Phyllis K; Dunbar, Erin; Genther, Renee; Coleman, C Lynn; Tabano, Margaret; Maurer, Jennifer; Vazquez, Adrienne; Capp, Elizabeth; McMillan, Jessica; Wilkerson, Katie; Robbins, Gerald; Phillips, Dorothy Green; Howick, Priscilla; Solaun, Catherine; Sloan, Jeff; Colón-Otero, Gerardo

2014-05-01

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

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

E-print Network

pediatric palliative care at boston college How do you meet the needs of children with life-limiting illnesses? As a pediatric palliative care nurse, you will deliver innovative nursing interventions and treat CARE COURSES NU 640 Palliative Care 1: Foundations of Life- Threatening Illness, Disease Progression

Huang, Jianyu

174

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: Clinical ethics Informed consent Physician-patient relations Palliative care Community networks Words count applied to palliative care in the home, they facilitate overall care including medical, social

Paris-Sud XI, Université de

175

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 by improving cooperation, coordination and the continuity of care. When applied to palliative care in the home and the gap between the legislation and the nature of the physician-patient relationship in palliative care

Paris-Sud XI, Université de

176

Report on Impact of the Palliative care Outcome Scale (POS): A global perspective  

E-print Network

the work of palliative care support teams and consisted of 17 items, to be rated from zero (best) to four on their use of the Palliative care Outcome Scale (POS) and its impact on the care of patients. A separate there is no formal organised palliative care. Seven used the POS in a hospice setting (inpatient, day hospice

Kühn, Reimer

177

The management of family conflict in palliative care  

PubMed Central

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

Lichtenthal, Wendy G.; Kissane, David W.

2013-01-01

178

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

PubMed Central

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

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

2005-01-01

179

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

2014-01-01

180

Developing cultural competence in palliative care.  

PubMed

Increasing ethnic or cultural diversity in the population served by health-care services requires improved competence and updated provision. Both individual staff and institutions need to reflect on and prepare to meet new challenges. Three key elements-reflective self-awareness, knowledge of others, and skills in managing difference-must be developed. Recognition of diversity and a database of appropriate information are essential for both workers and management of organisations. Above all, some preparedness for continual change and learning is essential. This article provides some suggestions and examples to assist with this. PMID:24514110

McGee, Paula; Johnson, Mark R D

2014-02-01

181

Just palliative care: responding responsibly to the suffering of the poor.  

PubMed

The disproportionate suffering of the world's poor from AIDS and cancer has generated efforts to promote palliative care as an affordable alternative to expensive disease-modifying therapies. These well-intentioned efforts stem from a wish to respond to the suffering of the poor as quickly and widely as possible and from the view that only inexpensive interventions are feasible in poor settings. Such efforts also may be informed by the cautious attitude of palliative care in rich countries toward disease-modifying treatments for patients with advanced life-threatening illnesses. Yet, acceptance of unequal access for the poor to life-saving medical services that are badly needed and potentially feasible is unjust. Although palliative interventions to relieve the disproportionate physical, psychological, and social suffering of the poor are essential, they should be integrated with preventive and disease-modifying interventions for major killers, such as acquired immunodeficiency syndrome and cancer. PMID:18971074

Krakauer, Eric L

2008-11-01

182

Palliative care for patients with advance chronic kidney disease.  

PubMed

Over the past three decades there has been a dramatic rise in the number of patients with advanced chronic kidney disease. The fastest expanding group receiving dialysis has been the elderly. However, for those patients who are very elderly with co-morbidity, dialysis may not offer a survival advantage. Therefore, active conservative management is a growing service offered by many renal units in the UK and focuses on non-dialytic correction of fluid and electrolyes, management of renal anaemia, and assessment and management of symptoms. The five-year survival of a patient over 75 years of age starting dialysis is 20% and if a patient is over 75 years, has co-morbidity, or a poor performance status, dialysis may not offer any survival advantage. Whether a patient is managed by dialysis or by conservative management the symptom burden suffered is high. These symptoms are under-recognised and often managed poorly because of increased drug toxicity in renal failure. This complex group of patients require close working between renal, palliative care, medicine for the elderly, and community teams, to allow best quality of life and end of life care. This review describes some of the challenges in providing Advanced Care Planning for dialysis and conservatively managed patients, highlights the symptom burden of patients with advanced chronic kidney disease, and offers guidance in how to manage the symptoms effectively. PMID:25318401

Douglas, A A

2014-09-01

183

Palliative and End-of-Life Care in the Serious and Persistently Mentally Ill Population  

Microsoft Academic Search

Palliative and end-of-life care have become topics of considerable interest over the past decade. However, caring for the seriously mentally ill dying population is an area within the palliative care field that is consistently overlooked. This article explores the limited literature regarding persons with serious and persistent mental illness and end-of-life and palliative care. It examines existing barriers to palliative

Angela Baker

2005-01-01

184

Family Perspectives on the Quality of Pediatric Palliative Care  

Microsoft Academic Search

Background: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of de- ceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medi- cal Center, Palo Alto, Calif. Methods: Sixty-eight

Nancy Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey Cohen

2002-01-01

185

What influences participation in clinical trials in palliative care in a cancer centre?  

Microsoft Academic Search

Like any other speciality, palliative care needs a scientific foundation on which to base its practice. Research in palliative care is particularly difficult because of the characteristics of the patient population under study (e.g. advanced disease, poor performance status and limited prognosis). The aim of this paper was to highlight the challenges of recruitment into clinical trials in palliative care.

J Ling; E Rees; J Hardy

2000-01-01

186

URMC Palliative Care Fellowship OVERALL EDUCATIONAL GOALS OF THE FELLOWSHIP PROGRAM  

E-print Network

, and providing hospice care. 7. Develop familiarity with economic, ethical, and legal aspects of palliative of palliative care to trainees and learn from members of the interdisciplinary team. 12. Critically evaluate the literature in palliative care and use it as a guide in the assessment and management of patients

Goldman, Steven A.

187

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

Federal Register 2010, 2011, 2012, 2013

...Request; Pediatric Palliative Care Campaign Pilot Survey Summary...effect if received within 60-days of the date of this publication...Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National...developed a Pediatric Palliative Care Campaign to address the...

2012-12-26

188

Knowledge of and attitudes towards palliative care among multinational nurses in Saudi Arabia.  

PubMed

Background Palliative care is not yet integrated into the health-care system in Saudi Arabia. King Faisal Specialist Hospital and Research Centre-Riyadh (KFSH&RC-Riyadh) is a tertiary care facility and regional cancer centre in Saudia Arabia with a highly multinational nursing workforce. Little is known about these nurses' knowledge of and attitudes towards palliative care. Aim To determine the palliative care knowledge and attitudes of the nursing workforce of KFSH&RC-Riyadh and any influencing factors. Method A questionnaire including demographic data, the Palliative Care Quiz for Nurses (PCQN), and Frommelt Attitude Toward Care of the Dying scale (FATCOD) was completed by 395 staff nurses from 19 countries. Results The nurses scored a mean of 111.66 out of 150 on the FATCOD scale and of 9.06 out of 20 on the PCQN. These scores indicate moderate attitudes towards but a knowledge deficit regarding palliative care. The nurses' palliative care training and years of nursing experience significantly affected the scores. The level of palliative care integration in the nurses' home countries was the most significant factor in multiple regression tests. Conclusion Palliative care integration into the health-care system of the country in which nurses train significantly influences their knowledge of and attitudes towards palliative care. Incorporating palliative care into nursing education might promote positive attitudes towards palliative care in nurses while enhancing their knowledge and skills. PMID:25250548

Abudari, Gassan; Zahreddine, Hassan; Hazeim, Hassan; Assi, Mohammad Al; Emara, Sania

2014-09-01

189

Prospective Comparison of Prognostic Scores in Palliative Care Cancer Populations  

PubMed Central

Purpose. Predicting prognosis in advanced cancer aids physicians in clinical decision making and can help patients and their families to prepare for the time ahead. Materials and Methods. This multicenter, observational, prospective, nonrandomized population-based study evaluated life span prediction of four prognostic scores used in palliative care: the original Palliative Prognostic Score (PaP Score), a variant of PaP Score including delirium (D-PaP Score), the Palliative Performance Scale, and the Palliative Prognostic Index. Results. A total of 549 patients were enrolled onto the study. Median survival of the entire group was 22 days (95% confidence intervals [95% CI] = 19–24). All four prognostic models discriminated well between groups of patients with different survival probabilities. Log-rank tests were all highly significant (p < .0001). The PaP and D-PaP scores were the most accurate, with a C index of 0.72 (95% CI = 0.70–0.73) and 0.73 (95% CI = 0.71–0.74), respectively. Conclusion. It can be confirmed that all four prognostic scores used in palliative care studies accurately identify classes of patients with different survival probabilities. The PaP Score has been extensively validated and shows high accuracy and reproducibility in different settings. PMID:22379068

Scarpi, Emanuela; Pittureri, Cristina; Martini, Francesca; Montanari, Luigi; Amaducci, Elena; Derni, Stefania; Fabbri, Laura; Rosati, Marta; Amadori, Dino; Nanni, Oriana

2012-01-01

190

Defining hospice and palliative care: some further thoughts.  

PubMed

Widespread acceptance of hospice in the United States has contributed to increased public and professional interest in improved care, not only for dying persons, but for persons undergoing treatment for conditions that may not pose an immediate threat to their life. 'Palliative care' has been brought into use to denote care that covers a broader category of patients who do not necessarily have a medical condition that is not, at present, life threatening. The use of two related and overlapping terms by health care professionals is confusing and, in the absence of clear definitions, has contributed to needless controversy. Hospice has a specific meaning in the United States. Palliative care, once used as a euphemism for hospice, now has several meanings. This paper is designed to explore the historical evolution of both terms and to reduce the confusion and controversy surrounding their current application. PMID:14640357

Lamers, William M

2002-01-01

191

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

192

Palliative care volunteerism among college students in Canada.  

PubMed

The goal of Study 1 was to investigate whether young Canadian adults were interested in becoming involved in palliative care volunteer work. After reading a brief description of what volunteering in a palliative care environment typically involves, participants (undergraduate students) were asked to indicate whether they would be interested in this kind of volunteer experience and to provide a written explanation of their answer. Of the 105 participating students, only 39 (37.1 percent) expressed an interest in volunteering, while 66 (62.9 percent) were not interested. Not surprisingly, the results revealed that significantly more females than males were interested in palliative care volunteer work (45.9 percent and 25.0 percent, respectively). The most common reason students gave for wanting to become a palliative care volunteer was to help others; the reason given most often for not wanting to volunteer was that it would be too emotionally demanding. It is important to note that prior to taking part in this study the majority of the participating students (75.9 percent) did not know what palliative care was. The goal of Study 2 was to investigate undergraduate students' interest in volunteering in a nursing home, in a classroom, and at a food bank. Of the 111 participating students, 74 (66.7 percent) expressed an interest in volunteering at a food bank and in a nursing home, and 89 (80.2 percent) were interested in becoming a classroom volunteer. Together, the results of Studies 1 and 2 support the view that young people in Canada (especially males) are not interested in becoming involved in the care of dying persons. However, the results also indicate that they are very interested in volunteering with other populations (e.g., the elderly, school children) and in other settings (e.g., food bank). PMID:15853088

Claxton-Oldfield, Stephen; Tomes, Jennifer; Brennan, Michelle; Fawcett, Catherine; Claxton-Oldfield, Jane

2005-01-01

193

Design of a Postgraduate Course in Palliative Care.  

ERIC Educational Resources Information Center

A postgraduate course on palliative nursing includes four class sessions and four peer review meetings in which students discuss case studies and assignments. The course is intended to prepare nurses for the bureaucratic, biomedical, social-therapeutic, and informal roles of terminal care. (SK)

Adriaansen, Marian J. M.; Frederiks, Carla M. A.

2002-01-01

194

Networking of Palliative Care at the Corporate Level  

PubMed Central

This article is a story of networking of palliative care at the corporate level. This gives an insight that if you have will and dedication then you can imagine and make it true that networking can start even before the birth of an organization. PMID:21811363

Rao, Kishore; Simha, Nagesh

2011-01-01

195

Narrative Palliative Care: A Method for Building Empathy  

Microsoft Academic Search

We make meaning of illness, suffering, and death through narrative, by telling a story. In this article, the authors explore narrative and palliative care: how, at the end of life, narratives of patients, caregivers, and clinicians serve to connect to those still living, and how through each telling and listening, we honor and validate the experience of suffering. A discussion

Patricia Stanley; Marsha Hurst

2011-01-01

196

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

197

Symptom control in palliative care: essential for quality of life  

Microsoft Academic Search

The World Health Organisation (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering and the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. From this it can be seen that

Debbie Norval; David Cameron

2004-01-01

198

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

199

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

200

Preference for place of care and place of death in palliative care: are these different questions?  

PubMed

Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (kappa 0.33) and 36% (kappa 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored. PMID:18755830

Agar, M; Currow, D C; Shelby-James, T M; Plummer, J; Sanderson, C; Abernethy, A P

2008-10-01

201

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

202

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

203

Moral Distress in Pediatric Palliative Care: A Case Study  

Microsoft Academic Search

End-of-life decisions for children can be complicated by disagreements between families and health care teams. These conflicts can lead to moral distress in providers. In addition, difficulties in prognostication aggravate the problem. How teams and institutions address potential staff distress is essential to providing effective palliative care for children. Through a case study of a child with a severe life-limiting

Scott M. Klein

2009-01-01

204

Supportive and Palliative Care of Advanced Nonmalignant Lung Disease  

Microsoft Academic Search

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

Michael Kreuter; Felix J. F. Herth

2011-01-01

205

Palliative care has an expanding future in the heart of health care in New Zealand.  

E-print Network

on an interdisciplinary, patient centered model of care delivered in people's homes, hospice, residential care facilitiesPalliative care has an expanding future in the heart of health care in New Zealand. It is founded and hospital and cares for people across the life span. Students from different professional backgrounds

Hickman, Mark

206

Teaching Palliative Care Across Cultures: The Singapore Experience  

PubMed Central

Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline. PMID:21811364

Breaden, Katrina

2011-01-01

207

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

PubMed Central

Background The need for palliative care in sub-Saharan Africa is staggering: this region shoulders over 67% of the global burden of HIV/AIDS and cancer. However, provisions for these essential services remain limited and poorly integrated with national health systems in most nations. Moreover, the evidence base for palliative care in the region remains scarce. This study chronicles the development and evaluation of DataPall, an open-source electronic medical records system that can be used to track patients, manage data, and generate reports for palliative care providers in these settings. DataPall was developed using design criteria encompassing both functional and technical objectives articulated by hospital leaders and palliative care staff at a leading palliative care center in Malawi. The database can be used with computers that run Windows XP SP 2 or newer, and does not require an internet connection for use. Subsequent to its development and implementation in two hospitals, DataPall was tested among both trained and untrained hospital staff populations on the basis of its usability with comparison to existing paper records systems as well as on the speed at which users could perform basic database functions. Additionally, all participants evaluated this program on a standard system usability scale. Results In a study of health professionals in a Malawian hospital, DataPall enabled palliative care providers to find patients’ appointments, on average, in less than half the time required to locate the same record in current paper records. Moreover, participants generated customizable reports documenting patient records and comprehensive reports on providers’ activities with little training necessary. Participants affirmed this ease of use on the system usability scale. Conclusions DataPall is a simple, effective electronic medical records system that can assist in developing an evidence base of clinical data for palliative care in low resource settings. The system is available at no cost, is specifically designed to chronicle care in the region, and is catered to meet the technical needs and user specifications of such facilities. PMID:23941694

2013-01-01

208

Philosophizing social justice in rural palliative care: Hayek's moral stone?  

PubMed

Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques of social justice. Hayek has likened social justice to a 'moral stone' arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro-level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice. PMID:22176547

Pesut, Barbara; Beswick, Frances; Robinson, Carole A; Bottorff, Joan L

2012-01-01

209

CareSearch: finding and evaluating Australia's missing palliative care literature  

PubMed Central

Background Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. Results To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. Conclusion CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence. PMID:16083513

Tieman, Jennifer J; Abernethy, Amy P; Fazekas, Belinda S; Currow, David C

2005-01-01

210

The development of core competencies for palliative care educators.  

PubMed

This article outlines the conceptual thinking and development of core competencies for a palliative care educator. It is suggested that the process of defining a common core of key skills, personal qualities and attributes that reflect the unique role of a palliative care educator can provide an indicator of the diversity and complexity of this role, which can be used by the educator and employer in job planning, review and professional development. It can also potentially inform pay remuneration that is commensurate with both experience and responsibilities. For employers there is the opportunity to use the core competencies in the appointment of suitably able educators above and beyond the requirements of a standard job description. PMID:18018817

Becker, Robert

2007-08-01

211

Pain Measurement Tools and Methods in Clinical Research in Palliative Care: Recommendations of an Expert Working Group of the European Association of Palliative Care  

Microsoft Academic Search

An Expert Working Group was convened under the auspices of the Steering Committee of the Research Network of the European Association of Palliative Care to review the status of the use of pain measurement tools (PMTs) in palliative care research conducted in a multilingual- multicenter setting. Based on a literature review and on the experts' opinion, the present work recommends

Augusto Caraceni; Nathan Cherny; Robin Fainsinger

212

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

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

2013-01-01

213

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

214

Recent advances in palliative cancer care at a regional hospital in Japan.  

PubMed

More than 30 years have passed since the introduction of the concept of palliative care in cancer care in Japan. However, the majority of the estimated three million cancer patients in Japan do not receive palliative care. Higashi Sapporo Hospital was established in 1983 as a hospital specialized in cancer care. The palliative care unit of our hospital currently consists of 58 beds. Our hospital is one of the largest hospitals in Japan in terms of the number of palliative care beds. On admission to our hospital, all patients are evaluated for palliative care by a multi-disciplinary team and some patients who undergo anticancer therapy receive palliative care when necessary. There are about 65 patients on average (28.3%) who are receiving only palliative care. In 2011, 793 patients died of cancer while admitted at our hospital. This number of cancer deaths accounted for 15% of the 5,324 cancer deaths in Sapporo City in the same year. Our hospital has played an active role according to the philosophy that "palliative cancer care is part of cancer medical care". We here report the current status of the contribution of our hospital to overcoming problems in palliative care and cancer care in Japan. PMID:24023262

Terui, Takeshi; Koike, Kazuhiko; Hirayama, Yasuo; Kusakabe, Toshiro; Ono, Kaoru; Mihara, Hiroyoshi; Kobayashi, Kenji; Takahashi, Yuji; Nakajima, Nobuhisa; Kato, Junji; Ishitani, Kunihiko

2014-11-01

215

Palliative care for the elderly - developing a curriculum for nursing and medical students  

Microsoft Academic Search

Background  Delivering palliative care to elderly, dying patients is a present and future challenge. In Germany, this has been underlined\\u000a by a 2009 legislation implementing palliative care as compulsory in the medical curriculum. While the number of elderly patients\\u000a is increasing in many western countries multimorbidity, dementia and frailty complicate care. Teaching palliative care of\\u000a the elderly to an interprofessional group

Johannes M Just; Christian Schulz; Maren Bongartz; Martin W Schnell

2010-01-01

216

End-of-Life Decisions and Advance Directives in Palliative Care  

Microsoft Academic Search

In order to explore possible differences in the scope of end-of-life decisions and attitudes toward advance directives (AD) in palliative care, we conducted a survey of 159 patients in palliative care institutions and 93 health-care professionals experienced in palliative care in the United States, Germany, and Japan. Giving an AD in this clinical setting was considered important by patients and

Raymond Voltz; Akira Akabayashi; Carol Reese; Gen Ohi; Hans-Martin Sass

1998-01-01

217

Ethical issues and palliative care in the cardiovascular intensive care unit.  

PubMed

Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges. PMID:24188227

Swetz, Keith M; Mansel, J Keith

2013-11-01

218

Evaluating the impact of palliative or hospice care provided in nursing homes.  

PubMed

Palliative and hospice care are increasingly being provided in nursing home settings. The current article reviews the existing evidence relevant to nursing homes to provide practitioners with a greater understanding of the impact of palliative and hospice care on clinical care outcomes (e.g., pain, symptom management), processes of care outcomes (e.g., hospitalizations, cost of care), and family member or health care proxy perceptions of care. Overall, the provision of hospice or palliative care in nursing facilities can improve the clinical care residents receive, reduce hospitalizations, and improve family members' perception of care. [Journal of Gerontological Nursing, 40(10), 10-14.]. PMID:25275780

Cimino, Nina M; McPherson, Mary Lynn

2014-10-01

219

The TLC model of palliative care in the elderly: preliminary application in the assisted living setting.  

PubMed

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

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 Asbj?rn

2011-01-01

221

Position Statement: Palliative Care for Children.  

ERIC Educational Resources Information Center

Notes that International Work Group on Death, Dying, and Bereavement recognizes wide variation of attitudes, beliefs, and behaviors pertaining to childhood death, dying, and bereavement. Statement identifies set of assumptions which can serve as guidelines, across cultures, in care of children with terminal illness and their families. (Author/NB)

Death Studies, 1993

1993-01-01

222

Comparing Clinician Ratings of the Quality of Palliative Care in the Intensive Care Unit  

PubMed Central

Objective There are numerous challenges to successfully integrating palliative care in the ICU. Our primary goal was to describe and compare the quality of palliative care delivered in an ICU as rated by physicians and nurses working in that ICU. Design Multi-site study using self-report questionnaires. Setting Thirteen hospitals throughout the United States. Participants Convenience sample of 188 physicians working in critical care (attending physicians, critical care fellows, resident physicians) and 289 critical care nurses. Measurements Clinicians provided overall ratings of the care delivered by either nurses or physicians in their ICU for each of seven domains of ICU palliative care using a 0–10 scale (0 indicating the worst possible and 10 indicating the best possible care). Analyses included descriptive statistics to characterize measurement characteristics of the 10 items, paired Wilcoxon tests comparing item ratings for the domain of symptom management with all other item ratings, and regression analyses assessing differences in ratings within and between clinical disciplines. We used p<0.001 to denote statistical significance to address multiple comparisons. Main Results The ten items demonstrated good content validity with few missing responses, ceiling or floor effects. Items receiving the lowest ratings assessed spiritual support for families, emotional support for ICU clinicians, and palliative-care education for ICU clinicians. All but two items were rated significantly lower than the item assessing symptom management (p<0.001). Nurses rated nursing care significantly higher (p<0.001) than physicians rated physician care in five domains. In addition, while nurses and physicians gave comparable ratings to palliative care delivered by nurses, nurses’ and physicians’ ratings of physician care were significantly different, with nurse ratings of this care lower than physician ratings on all but one domain. Conclusion Our study supports the content validity of the 10 overall rating items and supports the need for improvement in several aspects of palliative care including spiritual support for families, emotional support for clinicians, and clinician education about palliative care in the ICU. Further, our findings provide some preliminary support for surveying ICU clinicians as one way to assess the quality of palliative care in the ICU. PMID:21283006

Ho, Lawrence A.; Engelberg, Ruth A.; Curtis, J. Randall; Nelson, Judith; Luce, John; Ray, Daniel E.; Levy, Mitchell M.

2011-01-01

223

Improving search filter development: a study of palliative care literature  

PubMed Central

Background It is difficult to systematically search for literature relevant to palliative care in general medical journals. A previously developed search filter for use on OVID Medline validated using a gold standard set of references identified through hand searching, achieved an unacceptably low sensitivity (45.4%). Retrieving relevant literature is integral to support evidence based practice, and understanding the nature of the incorrectly excluded citations (false negatives) using the filter may lead to improvement in the filter's performance. Methods The objectives were to describe the nature of subjects reflected in the false negative citations and to empirically improve the sensitivity of the search filter. A thematic analysis of MeSH terms by three independent reviewers was used to describe the subject coverage of the missed records. Using a frequency analysis of MeSH terms, those headings which could individually contribute at least 2.5% to sensitivity (occurring 19 or more times) were added to the search filter. All previously run searches were rerun at the same time as the revised filter, and results compared. Results Thematic analysis of MeSH terms identified thirteen themes reflected in the missing records, none of them intrinsically palliative. The addition of six MeSH terms to the existing search filter (physician-patient relations, prognosis, quality of life, survival rate, treatment outcome and attitude to health) led to an increase in sensitivity from 46.3% to 64.7%, offset by a decrease in precision from 72.6% to 21.9%. Conclusion The filter's sensitivity was successfully increased using frequency analysis of MeSH terms, offset by a decrease in precision. A thematic analysis of MeSH terms for the false negative citations confirmed the absence of any intrinsically palliative theme or term, suggesting that future improvements to search filters for palliative care literature will first depend on better identifying how clinicians and researchers conceptualise palliative care. It is suggested that a constellation of parameters: stage of disease (advanced or active), prospect of cure (little or none), and treatment goals (primarily quality of life) may ultimately inform search strategies. This may be similarly true for chronic diseases, which share the inherent passage of time which marks them apart from acute, and therefore more readily identifiable, episodes of care. PMID:17597549

Sladek, Ruth M; Tieman, Jennifer; Currow, David C

2007-01-01

224

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

225

Poverty and pediatric palliative care: what can we do?  

PubMed

It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work. PMID:24835385

Beaune, Laura; Leavens, Anne; Muskat, Barbara; Ford-Jones, Lee; Rapoport, Adam; Zlotnik Shaul, Randi; Morinis, Julia; Chapman, Lee Ann

2014-01-01

226

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

227

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

228

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

229

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

230

Hospital-based Palliative care: A Case for Integrating Care with Cure.  

PubMed

The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement. PMID:21811377

Kulkarni, Priya Darshini

2011-01-01

231

Hospital-based Palliative care: A Case for Integrating Care with Cure  

PubMed Central

The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement. PMID:21811377

Kulkarni, Priya Darshini

2011-01-01

232

Geriatric Palliative Care in Long-Term Care Settings with a Focus on Nursing Homes  

PubMed Central

Abstract Almost 1.7 million older Americans live in nursing homes, representing a large proportion of the frailest, most vulnerable elders needing long-term care. In the future, increasing numbers of older adults are expected to spend time and to die in nursing homes. Thus, understanding and addressing the palliative care needs of this population are critical. The goals of this paper are to describe briefly the current state of knowledge about palliative care needs, processes, and outcomes for nursing home residents; identify gaps in this knowledge; and propose priorities for future research in this area. PMID:23984636

Carpenter, Joan G.

2013-01-01

233

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

234

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

235

Understanding patient and family: holistic assessment in palliative care.  

PubMed

Symptom relief in palliative care is dependent on the nurse undertaking a holistic general and symptom assessment and integrating these findings into a logical plan of care that can be evaluated against a set of negotiated goals. This article outlines the nature of the holistic assessment and how the establishment and maintenance of the therapeutic relationship can help the nurse to relieve distress, restore hope and enable the patient and family to achieve a good quality of life. Careful attention to the fundamentals of nursing practice, coupled with effective communication, will be shown to enhance the prospect of the patient, their family and the nurse feeling valued and enriched by encounters associated with symptom relief. PMID:16010232

Maher, David; Hemming, Laureen

2005-07-01

236

A systematic review of teaching and learning in palliative care within the medical undergraduate curriculum.  

PubMed

End of life care or palliative care has been acknowledged as important over the last 30 years and it is essential that doctors have core training in palliative care during their undergraduate training. There is little knowledge of the nature of teaching of palliative care within the undergraduate curriculum. This review was undertaken to determine the evidence to create an effective and appropriate undergraduate curriculum in palliative care. All relevant databases were electronically searched from 1966 until 2001 and selected contemporary work included. Key authors were contacted and grey literature and conference abstracts were searched. Efforts were made to quality grade any evaluation studies of teaching, learning and assessment. Two hundred and eighty abstract citations were obtained--192 papers were excluded due to lack of relevance to this study. Eighty-eight abstracts were obtained and forty-nine papers included in the review. There were no randomized controlled trials of educational interventions or open effect studies. All studies included were descriptive and were graded as level of evidence C. The main findings include lack of consistency in what undergraduates are taught about palliative care. Teaching tends to be fragmented, ad hoc and lacks co-ordination. There are difficulties in recruiting appropriate teachers. Palliative care is rarely formally assessed. Teaching focused more on the acquisition of knowledge and skills rather than attitudes. It is suggested that guidelines should be established within each medical school to develop an integrated curriculum for palliative care with due reference to the multidisciplinary nature of palliative care. PMID:15763870

Lloyd-Williams, Mari; MacLeod, Rod D M

2004-12-01

237

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

238

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

Federal Register 2010, 2011, 2012, 2013

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

2013-03-13

239

Suicide Prevention: Efforts To Increase Research and Education in Palliative Care. Report to Congressional Requesters.  

ERIC Educational Resources Information Center

Currently, the extent of palliative care instruction varies considerably across and within the three major phases of the physician education and training process. This analysis of current educational efforts in palliative care is based on information obtained from a survey conducted of all United States medical schools, surveys conducted on United…

General Accounting Office, Washington, DC. Health, Education, and Human Services Div.

240

Spouses' grief before the patient's death: Retrospective experiences related to palliative home care in urban Sweden  

Microsoft Academic Search

Based on the lived experience research model, this study retrospectively explores the experiences of spouses of persons who died after being admitted to palliative home care, in order to achieve a deeper understanding of the meaning(s) of spouses' grief before the patient's death. The context for the study was palliative home care in urban Sweden. The transcripts from interviews with

Hans Gunnarsson; Joakim Öhlén

2006-01-01

241

Sexuality and Life-Threatening Illness: Implications for Social Work and Palliative Care  

ERIC Educational Resources Information Center

Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…

Cagle, John G.; Bolte, Sage

2009-01-01

242

Childhood Sexual Abuse in Advanced Cancer Patients in the Palliative Care Setting  

Microsoft Academic Search

Childhood sexual abuse (CSA) is a common, distressing, yet rarely discussed topic in palliative care. The long-term effects of CSA can have a significant impact on patients’ quality of life, particularly at the end of life. In this article, we aim to initiate a discussion regarding the need to address CSA in the palliative care setting, using the example of

Carmella Wygant; David Hui; Eduardo Bruera

243

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

244

Euthanasia and Palliative Care in the Netherlands: An Analysis of the Latest Developments  

Microsoft Academic Search

This article discusses the latest developments regarding euthanasia and palliative care in the Netherlands. On the one hand, a legally codified practice of euthanasia has been established. On the other hand, there has been a strong development of palliative care. The combination of these simultaneous processes seems to be rather unique. This contribution first focuses on these remarkable developments. Subsequently,

Bert Gordijn; Rien Janssens

2004-01-01

245

Attitudes toward palliative care, conceptions of euthanasia and opinions about its legalization among French physicians  

Microsoft Academic Search

We assume that actors of the professionalization process of palliative care make a special effort to demarcate it from euthanasia, and that such an effort has a significant impact on beliefs and attitudes toward euthanasia among the whole medical profession. We investigated concurrently attitudes toward palliative care, conceptions of euthanasia and opinion toward its legalization among a sample of 883

P. Peretti-Watel; M. K. Bendiane; J. P. Moatti

2005-01-01

246

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

247

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

PubMed

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

Mendes, Joana C C; Justo da Silva, Lincoln

2013-12-01

248

Emergency calls and need for emergency care in patients looked after by a palliative care team: Retrospective interview study with bereaved relatives  

PubMed Central

Background During the last stage of life, palliative care patients often experience episodes of respiratory distress, bleeding, pain or seizures. In such situations, caregivers may call emergency medical services leading to unwanted hospital admissions. The study aims to show the influence of our palliative care team to reducing emergency calls by cancer patients or their relatives during the last six month of life. Methods Fifty relatives of deceased patients who had been attended by our palliative care team were randomly selected. Data was obtained retrospectively during a structured interview. In addition to demographic data, the number of emergency calls made during the final six months of the patient's life, the reason for the call and the mental compound score (MCS-12) of the caregivers was registered. Results Forty-six relatives agreed to the interview. Emergency calls were placed for 18 patients (39%) during the final six months of their lives. There were a total of 23 emergency calls. In 16 cases (70%) the patient was admitted to the hospital. Twenty-one (91%) of the calls were made before patients had been enrolled to receive palliative care from the team, and two (9%) were made afterwards. The mean mental compound score of the caregivers at the time of the interview was 41 (range 28–57). There was a lack of correlation between MCS-12 and number of emergency calls. Conclusion Emergency calls were more likely to occur if the patients were not being attended by our palliative care team. Because of the lack of correlation between MCS-12 and the number of emergency calls, the MCS-12 cannot indicate that acutely stressful situations triggered the calls. However, we conclude that special palliative care programs can reduce psychosocial strain in family caregivers. Therefore, the number of emergency calls may be reduced and this fact allows more palliative patients to die at home. PMID:18694527

Wiese, Christoph HR; Vossen-Wellmann, Andrea; Morgenthal, Hannah C; Popov, Aron F; Graf, Bernhard M; Hanekop, Gerd G

2008-01-01

249

Future echoes in pediatric palliative care: becoming sensitive to language.  

PubMed

As the specialty of pediatric palliative care emerges and develops, finding language to describe the complexity of "living while dying" is a challenge. Terms such as "life-limiting" and "life-threatening" are commonly used, but may not be sensitive enough to capture the experience of children and their families due to the restrictions and power at play in the history of the words "limit" and "threat". The search for the right words to use when speaking of children who are living while dying takes us to the language of metaphor and poetry that speaks to us in a different way, a way that encompasses not only the suffering, but also the dreams, hopes, and joys of children and families. Our preferred use of language also provides more than factual statements ever can, by speaking to the hearts and souls of health care providers who share precious moments with these families. PMID:17265662

Rallison, Lillian; Limacher, Lori Houger; Clinton, Michael

2006-01-01

250

'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study  

PubMed Central

Background Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. Methods The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items’ content validity, and (2) quantitative data collection (n?=?285 patients) using the POS and the Spirit 8 to assess construct validity. Results (1) Peace was interpreted according to the themes ‘perception of self and world’, ‘relationship to others’, ‘spiritual beliefs’ and ‘health and healthcare’. Life worthwhile was interpreted in relation to ‘perception of self and world’, ‘relationship to others’ and ‘identity’. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r?=?0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r?=?0.18) (both p?palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population. PMID:23758738

2013-01-01

251

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

252

A Spider in the Web: Role of the Palliative Care Nurse Specialist in Uganda—An Ethnographic Field Study  

Microsoft Academic Search

Background: Palliative care is not a priority in developing countries. Hospice Africa Uganda (HAU), where nurses complete a course in clinical palliative care, is considered a model for other African countries. Aim: To explore the role of the palliative care nurse specialist (PCNS) in Uganda. Methods: This ethnographic field study uses observations, interviews, and group interviews. Participants: In total, 20

Christiane Schaepe; Ann-Mari Campbell; Ingrid Bolmsjö

2011-01-01

253

Food for life, love and hope: an exemplar of the philosophy of palliative care in action.  

PubMed

The World Health Organization's (1990) definition of palliative care describes an holistic approach to care for patients with advanced progressive illness. Issues relating to nutrition, lack of appetite and the subsequent weight loss the individuals may experience present a challenge to all concerned with providing both formal and informal care to this patient group. The philosophy of palliative care requires a multidisciplinary approach to the constellation of issues and problems related to food that are faced by both patients and carers in receipt of palliative care. The literature in this area is mainly related to those patients with a cancer diagnosis. The developing role of palliative care in patients with non-malignant disease provides further challenges for health care professionals. The present paper aims to reflect an entire philosophical approach to care through an examination of one area of practice. PMID:15373953

Hopkins, Katherine

2004-08-01

254

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

255

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

256

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

PubMed Central

Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. Conclusions The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants. This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention. Trial Registration German Clinical Trials Register DRKS00000694 PMID:21605381

2011-01-01

257

MSc Advanced Practice (Palliative Care) This multi-disciplinary award pathway is highly suitable for experienced practitioners who wish to extend their  

E-print Network

to Palliative Care or students can select two optional modules from the wide range available to support and their impact upon palliative care policy and strategy Assessing and managing complex needs in palliative care Care Palliative Care for Progressive and Life-Limiting Conditions Two optional modules from

Davidson, Fordyce A.

258

Palliative Care in Brazil: A Challenge to the HealthCare System  

Microsoft Academic Search

The global expansion of the modern hospice movement has been fast and impressive, and in developing countries this phenomenon has also been registered, despite the structural and operational diffi culties of their health systems. This article will address the scenario of palliative and hospice care in Brazil, pointing to the challenges and diffi culties for the implementation of this comprehensive

Ciro Augusto Floriani

2008-01-01

259

Geriatric-palliative care units model for improvement of elderly care.  

PubMed

The aim of this research was to indicate the necessity of a new organizational model of health and social care system for the geriatric population in Croatia. Modern geriatrics puts special emphasis on the idea that the care of the elderly should be performed through home care or long-term care institutions, rather than in the acute care hospital departments. The social healthcare of the elderly requires a multidisciplinary approach, as well as teamwork and coordination of institutional and non-institutional departments. Founding of palliative care units is clearly absent from the existing elderly care system. 33% of the total deceased geriatric population within the target area (2000-2002) has passed away in institutions (Dubrovnik General Hospital and nursing homes), what clearly indicates a need for organized palliative care on the stationary level. Nursing homes in Croatia should accept about 4% of the total number of older population (according to the gerontology research). Nevertheless, this research shows that the available capacity of the nursing homes in the Dubrovansko-Neretvanska County is 50% of the projected percentage. The solution might be setting up of palliative-geriatric units in already existing institutions, as shown by the SWOT analysis. PMID:16117336

Tomasovi?, Nada

2005-06-01

260

Pain Management and Symptom-Oriented Drug Therapy in Palliative Care  

PubMed Central

Summary Patients with advanced life-limiting disease often suffer from symptoms that considerably impair their quality of life and that of their families. Palliative care aims to alleviate these symptoms by a multidimensional approach. Pharmacotherapy is an essential component. The objective of this review is to give an overview of symptom-oriented drug therapy for the most important symptoms in palliative care. Leading symptoms that affect quality of life include pain, dyspnea, nausea and emesis, weakness and disorientation. Careful examination and history taking help to understand the individual mechanisms underlying these symptoms. Specific pharmacotherapy provides an efficient way to achieve symptom control in the context of palliative care. PMID:21547023

Klein, Carsten; Lang, Ute; Bukki, Johannes; Sittl, Reinhard; Ostgathe, Christoph

2011-01-01

261

Perception of Nurses about Palliative Care: Experience from South-West Nigeria  

PubMed Central

Background: Nurses play a major role all over the world in the palliative care team. Aim: The aim of this study was to investigate the knowledge and attitude of nurses toward palliative care in a tertiary level hospital in Nigeria. Subjects and Methods: Setting: This cross-sectional questionnaire-based study was carried out among nurses at a tertiary health care facility in Ado-Ekiti, South-West Nigeria. A cross-sectional questionnaire-based study was carried out. The questionnaire sought information about the sociodemographic profile of respondents, their knowledge of definition and philosophy of palliative care among other things. Descriptive statistics was used to obtain the general characteristics of the study participants, while Chi-square was used to determine the association between categorical variables. A two-sided P < 0.05 was considered as significant. Results: A total of 100 questionnaires were returned with a female preponderance among the respondents with F: M ratio of 9:1. Regarding the definition of palliative care, 71.8% (48/66) of the respondents understood palliative care to be about pain medicine, 55% (33/60) thought it to be geriatric medicine, while 90.2% (83/92) felt palliative care is about the active care of the dying. Exactly 80.5% (66/82) respondents agreed that palliative care recognizes dying as a normal process while 84.1% (74/88) respondents were of the opinion that all dying patients would require palliative care. The use of morphine would improve the quality of life of patients according to 68.9% (42/61) of respondents. Conclusion: There are gaps in the knowledge of healthcare workers in the area of palliative care and this call for a review of the current nursing curriculum and practice guidelines in Nigeria. PMID:25328782

Fadare, JO; Obimakinde, AM; Olaogun, DO; Afolayan, JM; Olatunya, O; Ogundipe, KO

2014-01-01

262

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

PubMed Central

Objective To explore how transitions to a palliative care approach are perceived to be managed in acute hospital settings in England. Design Qualitative study. Setting Secondary or primary care settings in two contrasting areas of England. Participants 58 health professionals involved in the provision of palliative care in secondary or primary care. Results Participants identified that a structured transition to a palliative care approach of the type advocated in UK policy guidance is seldom evident in acute hospital settings. In particular they reported that prognosis is not routinely discussed with inpatients. Achieving consensus among the clinical team about transition to palliative care was seen as fundamental to the transition being effected; however, this was thought to be insufficiently achieved in practice. Secondary care professionals reported that discussions about adopting a palliative care approach to patient management were not often held with patients; primary care professionals confirmed that patients were often discharged from hospital with “false hope” of cure because this information had not been conveyed. Key barriers to ensuring a smooth transition to palliative care included the difficulty of “standing back” in an acute hospital situation, professional hierarchies that limited the ability of junior medical and nursing staff to input into decisions on care, and poor communication. Conclusion Significant barriers to implementing a policy of structured transitions to palliative care in acute hospitals were identified by health professionals in both primary and secondary care. These need to be addressed if current UK policy on management of palliative care in acute hospitals is to be established. PMID:21447572

2011-01-01

263

[Anemia caused by cancer in the context of palliative care].  

PubMed

Tumor anemia is very common in patients with cancer. The causes are very diverse and the parameter value depends on several factors. If this however develops to be symptomatic it may adversely impact health related quality of life. Erythropoietin or blood transfusion provides options for treatment. However, these are not always uneventful. There could also be a lack of response to Erythropoietin. This case report describes the complexity of tumor anemia. It also includes a more detailed discussion on the Fatigue Syndrome, which is one of the most common symptoms of patients with cancer. In the context of palliative care there is often the question of alternatives for improving the quality of patients life. Some kinds of treatment may also cause the opposite effect. A multidimensional assessment should help to approach this difficult issue and to find ways for a meaningful treatment of the symptoms of anemia. PMID:22328049

Altinger, Marion; Strasser, Florian

2012-01-01

264

Using play therapy in paediatric palliative care: listening to the story and caring for the body.  

PubMed

To be truly comprehensive, palliative care for children must address more than pain control and symptom management. Holistic care also encompasses attention to the child's relationships, hopes, fears and wishes. Parents and caregivers of dying children are generally the primary decision-makers in the child's care and can find the transition from active, to palliative care, particularly difficult. Nurses who understand the parents' perspective can better support them. Children reveal their hopes and fears through play. By being attuned to symbols and themes in play, nurses can better interpret the dying child's journey. Nurses can facilitate communication and connection between parents and child and thereby promote healing during the dying process. PMID:20081723

van Breemen, Camara

2009-10-01

265

Communication and advanced care planning in palliative and end-of-life care.  

PubMed

Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and end-of-life care. Two focused Medline searches were conducted to locate articles that addressed ACP in the U.S. Content analysis was utilized to summarize and categorize the literature into five domains: (1) ADs, (2) ACP and communication, (3) Barriers to ACP, (4) Differential domains of ACP, and (5) Interventions to enhance the process. Policies and protocols for ACP and communication have been developed to facilitate the process in different patient populations and locations of care. Effective ACP is an essential component of person-centered end-of-life and palliative care. PMID:23141195

Waldrop, Deborah P; Meeker, Mary Ann

2012-01-01

266

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

Microsoft Academic Search

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

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

2011-01-01

267

Palliative and Aggressive End-of-Life Care for Patients With Dementia  

Microsoft Academic Search

Objectives: The goals of this study were to establish the frequency of palliative and aggressive treatment measures among patients with and without dementia during the last six months of life, to identify relation- ships between the severity of dementia and aggressive and palliative care, and to determine whether treatment patterns have changed over time. Methods: Antemortem data for 279 patients

Martin M. Evers; B. S. Dushyant Purohit; Daniel Perl; Khalid Khan; Deborah B. Marin

2002-01-01

268

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

269

Can Palliative Home Care Reduce 30-Day Readmissions? Results of a Propensity Score Matched Cohort Study  

PubMed Central

Abstract Objective This study examined the impact of palliative home nursing care on rates of hospital 30-day readmissions. Methods The electronic health record based retrospective cohort study was performed within home care and palliative home care programs. Participants were home care patients discharged from one of three urban teaching hospitals. Outcome measures were propensity score matched rates of hospital readmissions within 30 days of hospital discharge. Results Of 406 palliative home care patients, matches were identified for 392 (96%). Of 15,709 home care patients, 890 were used at least once as a match for palliative care patients, for a total final sample of 1282. Using the matched sample we calculated the average treatment effect for treated patients. In this sample, palliative care patients had a 30-day readmission probability of 9.1% compared to a probability of 17.4% in the home care group (mean ATT: 8.3%; 95% confidence interval [CI] 8.0%–8.6%). This effect persisted after adjustment for visit frequency. Conclusions Palliative home care may offer benefits to health systems by allowing patients to remain at home and thereby avoiding 30-day rehospitalizations. PMID:24007348

Ranganathan, Anjana; Dougherty, Meredith; Waite, David

2013-01-01

270

A Bimonthly Interdisciplinary State-wide Palliative Care Case Conference Promotes Education, Networking, and Emotional Support  

PubMed Central

Background: Meeting emotional, educational, and professional development needs for palliative care practitioners is a priority of clinical practice guidelines for quality palliative care. Here, we introduce and evaluate Palliative Pupus, a novel, state-wide, interdisciplinary, case conference designed to meet these needs. Methods: Palliative Pupus is a free, interdisciplinary case conference open to all hospice and palliative care clinicians in Hawai‘i. The conference has convened every other month since 2010 and is jointly sponsored by Hawai‘i's largest hospital-based palliative care program and Kokua Mau, Hawai‘i's hospice and palliative care organization. Twenty to forty participants typically meet on the island of O‘ahu and are joined by participants from other islands who attend remotely via audio or video conferencing technology. Attendees at the Palliative Pupus on May 15th, 2013 were asked to complete an anonymous evaluation tool designed for this purpose. Demographic data were analyzed using SPSS software (IBM, 1911) and inductive content analysis was carried out on open-ended questions. Results: Twenty-four attendees participated in the study. The majority of participants were women (75%). The leading disciplines of attendees were nursing (46%), medicine (25%), and chaplaincy (12.5%). The primary work settings were hospice (67%) and hospital (25%). Participants cited education (96%), networking (87%), and emotional support (37%) as reasons for attending. Inductive content analysis revealed the most valued benefits of attending were educational (71%), an enhanced sense of being part of a community of providers (24%), and emotional/psychological support (24%). Respondents agreed that the format of the conference would work in other communities (100%) and that they would recommend attending the conference to others (100%). Conclusions: Palliative Pupus is an innovative and sustainable state-wide approach to meeting diverse educational, emotional, and networking needs for practitioners in palliative care. Participants expressed confidence that this approach could be successfully disseminated to other states.

Freitas, Elizabeth; Fischberg, Daniel

2014-01-01

271

Establishing a Palliative Care Team (PCT) in Radiation Therapy: The British Columbia Cancer Agency Vancouver Center Experience  

Microsoft Academic Search

The radiation therapy department at the Vancouver Cancer Center, British Columbia, Canada, has introduced a Palliative Care Team (PCT). The PCT consists of a group of radiation therapists dedicated to the care of patients undergoing palliative radiation therapy. The PCT is responsible for the simulation, education, dose calculations, verification system data entry and treatment of each palliative patient. Participation in

Craig Elith

2006-01-01

272

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

273

Professional and educational needs of hospice and palliative care social workers.  

PubMed

In the past decade much growth has occurred in the numbers of patients and families served by hospices and palliative care services. Thus, not surprisingly, these services have also been subject to increasing regulation by governmental and accrediting entities. In order to stay up-to-date in this ever-changing environment and to continue to provide effective interventions, social workers must stay engaged in the professional community and continuing education. In this quantitative study, 1,169 practicing hospice and palliative care social workers provided information about their practice activities and agency characteristics, professional affiliations and certification, and ongoing educational needs. About one-half of respondents carried a caseload of 21-50 and were most engaged in communicating the psychosocial needs of the patient and family to other members of the team and assessing for grief and bereavement issues. The most important educational needs pertained to the psychological and social needs of patients and families and psychosocial interventions. Most were members of professional organizations and three-quarters were members of NASW. Although many were aware of the joint NASW-NHPCO social work hospice specialty certification, few held this certification yet. The results of this survey can be utilized in the design of continuing education programs and advocacy for programmatic and policy change within agencies and the industry. PMID:23438645

Weisenfluh, Sherri M; Csikai, Ellen L

2013-01-01

274

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

275

Specialized Pediatric Palliative Home Care: A Prospective Evaluation  

PubMed Central

Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness–Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children. PMID:24168349

Borasio, Gian Domenico; Nickolay, Carla; Bender, Hans-Ulrich; von Lüttichau, Irene; Führer, Monika

2013-01-01

276

Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care?  

PubMed

Hospice/palliative care is a critical component of cancer care. In Australia, more than 85% of people referred to specialized hospice/palliative care services (SHPCS) have a primary diagnosis of cancer, and 60% of people who die from cancer will be referred to SHPCS. The Palliative Care Outcomes Collaboration (PCOC) is an Australian initiative that allows SHPCS to collect nationally agreed-upon measures to better understand quality, safety, and outcomes of care. This article describes data (October 2006 through September 2007) from the first 22 SHPCS, with more than 100 inpatient admissions annually. Data include phase of illness, place of discharge, and, at each transition in place of care, the person's functional status, dependency, and symptom scores. Data are available for 5,395 people for 6,379 admissions. After categorizing by phase of illness and dependency, there remain at the end of each admission 12-fold differences (mean, 26%; range, 4% to 52%) in the percentage of patients who became stable after an unstable phase; seven-fold differences (mean, 22%; range, 6% to 41%) in the percentage of patients with improved symptom scores, five-fold differences (mean, 25%; range, 12% to 64%) in discharge back to the community, four-fold differences (mean, 10%; range, 4% to 16%) in improved function, and three-fold differences in the length of stay (mean, 14 days; range, 6 to 19 days). PCOC shows it is feasible to collect quality national palliative care outcome data voluntarily. Variations in outcomes justify continued enrollment of services. Benchmarking should include all patients whose cancer will cause death and explore observed variations. PMID:18688052

Currow, David C; Eagar, Kathy; Aoun, Samar; Fildes, Dave; Yates, Patsy; Kristjanson, Linda J

2008-08-10

277

Applying sociodramatic methods in teaching transition to palliative care.  

PubMed

We introduce the technique of sociodrama, describe its key components, and illustrate how this simulation method was applied in a workshop format to address the challenge of discussing transition to palliative care. We describe how warm-up exercises prepared 15 learners who provide direct clinical care to patients with cancer for a dramatic portrayal of this dilemma. We then show how small-group brainstorming led to the creation of a challenging scenario wherein highly optimistic family members of a 20-year-old young man with terminal acute lymphocytic leukemia responded to information about the lack of further anticancer treatment with anger and blame toward the staff. We illustrate how the facilitators, using sociodramatic techniques of doubling and role reversal, helped learners to understand and articulate the hidden feelings of fear and loss behind the family's emotional reactions. By modeling effective communication skills, the facilitators demonstrated how key communication skills, such as empathic responses to anger and blame and using "wish" statements, could transform the conversation from one of conflict to one of problem solving with the family. We also describe how we set up practice dyads to give the learners an opportunity to try out new skills with each other. An evaluation of the workshop and similar workshops we conducted is presented. PMID:22889858

Baile, Walter F; Walters, Rebecca

2013-03-01

278

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

279

Can we overcome the effect of conflicts in rendering palliative care? An introduction to the Middle Eastern Cancer Consortium (MECC).  

PubMed

The Middle East has been experiencing an ongoing political conflict for the past several decades. This situation has been characterized by hostility often leading to violence of all sources. At times, such a conflict led to the outbreak of a military war, which was followed by an enmity between religious, ethnic, cultural, and national populations. In such environmental situations, palliative care professionals often confront major challenges including bias, mistrust, and mutual suspicion between patients and their treating clinicians. In order to overcome such obstacles, while rendering palliative care services, all professionals involved need careful planning and execution of their treatment plans. The latter is however possible, and sometimes successful even across lines of conflict, thereby promoting understanding, mutual respect, and tolerance between the involved communities and individuals. PMID:21538041

Silbermann, Michael; Khleif, Amal; Tuncer, Murat; Pitsillides, Barbara; Shad, Aziza; Oberman, Amitai; Elshami, Mohammad; Gultekin, Murat; Daher, Michel; Tarawneh, Mohammed; Harford, Joe

2011-08-01

280

Preventing crises in palliative care in the home. Role of family physicians and nurses.  

PubMed Central

With the current shift to community care, the need for palliative care in the home involving the family physician has increased. Potential causes of crises in the home care of the dying are identified. Strategies to prevent crises are suggested that rely on a team's providing comprehensive and anticipatory care. PMID:7539653

Howarth, G.; Willison, K. B.

1995-01-01

281

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

PubMed

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

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

2014-01-01

282

End-of-Life Care  

MedlinePLUS

... of Help Geriatric care managers, grief counselors, and palliative care and hospice staff are trained to help make ... help you understand and deal with your feelings. Palliative care and hospice services provide care for a very ...

283

Valued aspects of primary palliative care: content analysis of bereaved carers' descriptions  

PubMed Central

Background: Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support. Aim: To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support. Design of study: Retrospective interviews. Setting: Primary care in Cambridgeshire. Method: Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support. Results: The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (?75 years), but this finding requires further investigation. Conclusion: Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home. PMID:15469677

Grande, Gunn E; Farquhar, Morag C; Barclay, Stephen IG; Todd, Chris J

2004-01-01

284

Project ENABLE: a palliative care demonstration project for advanced cancer patients in three settings.  

PubMed

At the end of the 1990s, based on data from two major studies of end-of-life (EOL) care, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), and the Hospitalized Elderly Longitudinal Project (HELP), a consensus panel report documented the problems and needs of patients with cancer and other life-limiting diagnoses at end-of-life. A national program of The Robert Wood Johnson Foundation (RWJF), Promoting Excellence in End-of-Life Care, attempted to address these needs by funding demonstration projects to test various approaches to improve identified deficits. In 1998, Project ENABLE (Educate, Nurture, Advise Before Life Ends), one of four RWJF-funded cancer center/hospice collaborations of the Promoting Excellence program, began to address these issues. The jointly sponsored Norris Cotton Cancer Center (NCCC)/Hospice of Vermont and New Hampshire (Hospice VNH) program provided an integrated approach to the management of life-limiting cancer. Project ENABLE was aimed at alleviating the symptoms of disease and treatment, enhancing clinician and patient/family communication, offering support for families, friends and other caregivers, addressing emotional and spiritual needs of dying people and providing conceptual and administrative structure to provide EOL care consistent with patients' values and preferences. Although patient symptom data is not yet available, other measures of success included improved access to hospice and palliative care services from the time of diagnosis and a sustained palliative care program at two of the three sites in which the program was implemented. PMID:15130218

Bakitas, Marie; Stevens, Marguerite; Ahles, Tim; Kirn, Marie; Skalla, Karen; Kane, Nancy; Greenberg, E Robert

2004-04-01

285

Principles of a paediatric palliative care consultation can be achieved with home telemedicine.  

PubMed

We compared the records of paediatric palliative consultations undertaken face-to-face, with telemedicine consultations undertaken in patients' homes. A convenience sample of consecutive paediatric palliative care patients was identified from the hospital's palliative care database. A total of 100 consultations was reviewed (50 telemedicine consultations during home visits and 50 face-to-face consultations) according to 14 established principles and components of a paediatric palliative care consultation. In the telemedicine group there was a higher proportion of patients in a stable condition (58% vs 7%), and a lower proportion of patients in terminal phase (2% vs 17%). Discussion about pain and anorexia were significantly more common in the telemedicine group. Discussion about follow up was significantly more common in the telemedicine group (86% vs 56%), whilst resuscitation planning was more common in deteriorating patients receiving inpatient care. All other components and principles of a palliative care consultation were documented equally regardless of method of consultation. The findings confirm that palliative consultations via telemedicine are just as effective as face-to-face consultations in terms of the documented components of the consultation. PMID:25399995

Bradford, Natalie K; Armfield, Nigel R; Young, Jeanine; Herbert, Anthony; Mott, Christine; Smith, Anthony C

2014-10-01

286

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

287

The ventilator-dependent infant requiring palliative care in the neonatal intensive care unit: A literature review  

Microsoft Academic Search

Aim: To review the literature relevant to palliative care of the ventilated infant and their family.\\u000aBackground: Impeccable symptom assessment and management is necessary to ensure the optimal quality of life for the ventilated palliative infant and their family. There is a plethora of literature regarding symptom assessment and care when a decision has been made to withdraw ventilatory support.

Christine Foster; Leanne Monterosso

2012-01-01

288

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

289

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

290

Impact of a home-based social welfare program on care for palliative patients in the Basque Country (SAIATU Program)  

PubMed Central

Background SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service), in Guipúzcoa (Autonomous Community of the Basque Country). In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients. The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals. The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU) results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. Method/design Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care. For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index), and of the outcomes of palliative care received (Palliative Outcome Scale). Ethical approval for the study was given by the Clinical Research Ethics Committee of Euskadi (CREC-C) on 10 Dec 2012. Discussion The results of this prospective study will assist in verifying or disproving the hypothesis that the in-home social care offered by SAIATU improves the efficiency of healthcare resource usage by these patients (quality of life, symptom control). This project represents a dramatic advance with respect to other studies conducted to date, and demonstrates how, through the provision of personnel trained to provide social care for patients in the advanced stages of illness, and through strengthening the co-ordination of such social services with existing healthcare system resources, the resulting holistic structure obtains cost savings within the health system and improves the efficiency of the system as a whole. PMID:23363526

2013-01-01

291

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

292

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

293

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

294

Failing the failing heart: a review of palliative care in heart failure.  

PubMed

Heart failure (HF) is the most common reason for hospital admission for patients older than 65 years. With an aging population and improving survival in heart failure patients, the number of people living with HF continues to grow. As this population increases, the importance of treating symptoms of fatigue, dyspnea, pain, and depression that diminish the quality of life in HF patients becomes increasingly important. Palliative care has been shown to help alleviate these symptoms and improve patients' satisfaction with the care they receive. Despite this growing body of evidence, palliative care consultation remains underutilized and is not standard practice in the management of HF. With an emphasis on communication, symptom management, and coordinated care, palliative care provides an integrated approach to support patients and families with chronic illnesses. Early communication with patients and families regarding the unpredictable nature of HF and the increased risk of sudden cardiac death enables discussions around advanced care directives, health care proxies, and deactivation of permanent pacemakers or implantable cardioverter defibrillators. Cardiologists and primary care physicians who are comfortable initiating these discussions are encouraged to do so; however, many fear destroying hope and are uncertain how to discuss end-of-life issues. Thus, in order to facilitate these discussions and establish an appropriate relationship, we recommend that patients and families be introduced to a palliative care team at the earliest appropriate time after diagnosis. PMID:23651985

Shah, Ankit B; Morrissey, Ryan P; Baraghoush, Afshan; Bharadwaj, Parag; Phan, Anita; Hamilton, Michele; Kobashigawa, Jon; Schwarz, Ernst R

2013-01-01

295

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

296

End of Life Care Policy for the Dying: Consensus Position Statement of Indian Association of Palliative Care  

PubMed Central

EXECUTIVE SUMMARY Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education. PMID:25191002

Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh

2014-01-01

297

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

PubMed

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

Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth

2014-01-01

298

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

299

Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention  

Microsoft Academic Search

BACKGROUND: There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will

Elizabeth L Sampson; Ingela Thuné-Boyle; Riitta Kukkastenvehmas; Louise Jones; Adrian Tookman; Michael King; Martin R Blanchard

2008-01-01

300

Outcome measures in palliative care for advanced cancer patients: a review  

Microsoft Academic Search

Summary Information generated using outcome measures to measure the effectiveness of palliative care interventions is potentially invaluable. Depending on the measurement tool employed the results can be used to monitor clinical care, carry out comparative research, provide audit data or inform purchas- ing decisions. However, the data collected can only ever be as good as the method used to obtain

Julie Hearn; Irene J. Higginson

301

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

302

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

ERIC Educational Resources Information Center

Research suggests that better educational preparation is necessary to assure that health care social workers have the competencies essential for high quality interdisciplinary palliative care practice. This study is a qualitative evaluation of those elements contributing to competence and confidence in interdisciplinary practice skills of second…

Supiano, Katherine P.; Berry, Patricia H.

2013-01-01

303

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, Nathalia Rodrigues; Santos, Franklin Santana

2014-01-01

304

Pain and Symptom Management in Palliative Care and at End of Life  

PubMed Central

The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptom are inadequately assessed and managed even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, still gaps remain. One approach of addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life. PMID:22985972

Ezenwa, Miriam O.

2012-01-01

305

What about the trach? Tracheotomy removal as a palliative care maneuver.  

PubMed

Tracheotomy is performed on patients with airway obstruction or prolonged mechanical ventilation. Tracheotomy patients are increasingly being referred to hospice and palliative care. This case series describes a process for evaluating the ongoing need for tracheotomy and the impact of tracheotomy removal. A retrospective cohort design was used in which charts were reviewed of all tracheotomy patients referred to the palliative care unit between November 1, 1998, and July 31, 2001. Tracheotomy was present in 13 of 791 palliative care unit admissions. Persistent airway obstruction contraindicated tracheotomy removal in 5 patients. The remaining patients had a successful "button" trial with subsequent tracheotomy removal. They incurred no complications and exhibited improved functional status and decreased symptom burden. Tracheotomy removal is safe and beneficial in this patient subset and should be considered an alternative to prolonged tracheotomy. PMID:17601830

Newman, Alfred J; Kvale, Elizabeth A; Williams, Beverly R; Bailey, F Amos

2007-01-01

306

A Palliative Cancer Care Flexible Education Program for Australian Community Pharmacists  

PubMed Central

Objective To implement and evaluate a flexible palliative care education program for Australian community pharmacists. Design After identifying pharmacists' education needs, the program content and format were developed. This included identifying expert writers to create modules, assigning education and palliative care specialists to review content, and designing Web hosting of materials. The program was comprised of 11 modules and 79 activities. Assessment An average of 28 responses was posted for each of the 20 noticeboard activities. Of the 60 pharmacists who began the program, 15 contributed to the discussion group, with an average of 3 posts each. Participants' responses to an online questionnaire indicated the program addressed their education needs and improved their knowledge and confidence in providing palliative cancer care. Conclusion A program that pharmacists could access at a time and place convenient to them via the Internet was developed. Pharmacists indicated the program positively impacted their practice. PMID:20414437

Marriott, Jennifer L.; Beattie, Jill; Nation, Roger L.; Dooley, Michael J.

2010-01-01

307

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

PubMed Central

Objective To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes. Design Pooled analysis of a retrospective cohort study. Setting Ontario, Canada. Participants 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed). Intervention The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams’ role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day. Main outcome measures Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital. Results In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52). Conclusions Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life. PMID:24906901

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

2014-01-01

308

Validation of the palliative prognostic index and palliative prognostic score in a palliative care consultation team setting for patients with advanced cancers in an acute care hospital in Japan.  

PubMed

This study aims to clarify the predictive value of two prognostic prediction tools, the palliative prognostic index (PPI) and the palliative prognostic score (PaPS), in a setting of general hospital palliative care team for patients with advanced cancers in an acute care hospital in Japan. The retrospective observational study includes 247 patients for the PPI analysis and 187 patients for the PaPS analysis, all patients are older than 18 years, hospitalized with an advanced cancer, and referred to the palliative care team in an acute care hospital in Japan. The study successfully show that both the PPI and PaPS have an ability to divide patients into three groups, each with significantly different survival length (p<0.001). However, there are discrepancies in the results for predicting the length of survival between the study and the original studies conducted in hospice settings. The results suggest that although PPI and PaPS successfully divide patients into three groups with significantly different survival times, discrepancies exist in predicting the actual length of survival. PMID:24071626

Sonoda, Hiroshi; Yamaguchi, Takashi; Matsumoto, Mina; Hisahara, Ko

2014-11-01

309

Dying in Palliative Care Units and in Hospital: A Comparison of the Quality of Life of Terminal Cancer Patients.  

ERIC Educational Resources Information Center

Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…

Viney, Linda L.; And Others

1994-01-01

310

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

Microsoft Academic Search

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,

Mark Taubert; Annmarie Nelson

2010-01-01

311

Resilience and well-being in palliative care staff: a qualitative study of hospice nurses' experience of work  

Microsoft Academic Search

Although working with cancer patients is considered stressful, palliative care staff experience similar levels of psychological distress and lower levels of burnout than staff working in other specialties. There are few empirical studies in palliative care to explain this. Since working in a stressful job does not inevitably lead to psychological distress, the antecedent factors that promote resilience and maintain

Janice R. Ablett; R. S. P. Jones

2007-01-01

312

Is the Principle of Equal Access for All Applied in Practice to Palliative Care for the Elderly?  

E-print Network

needing palliative care, since 62% of the patients in our study suffered from moderate to severe senile Examination (MMSE): the fewer cognitive problems the end-of-life patients had, the better the overallIs the Principle of Equal Access for All Applied in Practice to Palliative Care for the Elderly

Paris-Sud XI, Université de

313

Telephone consultation in palliative care for cancer patients: 5 years of experience in The Netherlands  

Microsoft Academic Search

Goals of work  To analyze cancer patient-related consultations of a telephone helpdesk (TH) for palliative care over a period of 5 years\\u000a in the region of Utrecht, The Netherlands.\\u000a \\u000a \\u000a \\u000a Materials and methods  A descriptive analysis was performed of consultations over a period of 5 years (2001–2006). The discipline and location of\\u000a requesting professionals, patient characteristics, reasons for calling, symptoms, palliative care problems and needs

S. C. C. M. Teunissen; E. H. Verhagen; M. Brink; B. A. van der Linden; E. E. Voest; A. de Graeff

2007-01-01

314

Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies  

Microsoft Academic Search

Background  Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the\\u000a impact of three community based palliative care interventions in sub-Saharan Africa.\\u000a \\u000a \\u000a \\u000a \\u000a Methods  Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each\\u000a country, triangulating data from three sources: interviews with key

Liz Grant; Judith Brown; Mhoira Leng; Nadia Bettega; Scott A Murray

2011-01-01

315

Gathering information to develop palliative care programs for Alaska's Aboriginal peoples.  

PubMed

Over an eight-year period, the authors conducted focus groups in six Alaska Aboriginal communities. They sought information about traditional ways of caring for the dying, current values and preferences surrounding death, the kind of support caregivers need, and how a palliative care program could assist families caring for loved ones in the community. Focus groups are a standard qualitative research tool for gathering information when a new program or service is planned. However, for Alaska's Aboriginal people living in remote settings, the standard focus group design is not useful. That design was modified to reflect cultural norms and communication methods while adhering to standards of qualitative research. Communities selected represented different groups of Alaska's Indigenous people; 84 Aboriginal elders participated. Culturally modified focus groups yielded rich and useful information about historical and traditional practices surrounding death. Participants also vocalized expectations and concerns regarding their own eventual deaths. The process of conducting six different focus groups throughout Alaska yielded valuable information about community engagement in Aboriginal communities. PMID:20402181

Decourtney, Christine A; Branch, P Kay; Morgan, Karen M

2010-01-01

316

Can curative or life-sustaining treatment be withheld or withdrawn? The opinions and views of Indian palliative-care nurses and physicians  

Microsoft Academic Search

Introduction: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms\\u000a which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care\\u000a physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians’\\u000a attitudes towards withholding and withdrawal of curative or

Joris Gielen; Sushma Bhatnagar; Seema Mishra; Arvind K. Chaturvedi; Harmala Gupta; Ambika Rajvanshi; Stef Van den Branden; Bert Broeckaert

2011-01-01

317

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

318

Palliative care in COPD--web survey in Sweden highlights the current situation for a vulnerable group of patients  

PubMed Central

Background Chronic obstructive pulmonary disease (COPD) is a common cause of death. Despite the heavy symptom burden in late stages, these patients are relatively seldom referred to specialist palliative care. Methods A web-based survey concerning medical and organizational aspects of palliative care in COPD was distributed to respiratory physicians in Sweden. There were 93 respondents included in the study. Results Palliative care issues were regularly discussed with the patients according to a third of the respondents. About half of the respondents worked in settings where established routines for co-operation with palliative units were available at least to some extent. Less than half of the respondents (39%) were aware of current plans to develop palliative care, either as a co-operative effort or within the facility. Palliative care is focused on physical, psychological, social, and existential dimensions, and the proportions of respondents providing support within these dimensions, ‘always' or ‘often', were 83%, 36%, 32%, and 11%, respectively. Thus, to treat the physical dimensions was perceived as much more obvious than to address the other dimensions. Conclusions The survey indicates that the priorities and resources for palliative care in COPD are insufficient in Sweden. The data, despite limitations, reveal a lack of established team-work with specialized palliative care units and actual plans for such co-operation. PMID:23710665

Ekberg-Jansson, Ann; Strang, Peter; Larsson, Lars-Olof

2013-01-01

319

Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer  

Microsoft Academic Search

Background Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease. Methods We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive

Jennifer S. Temel; Joseph A. Greer; Alona Muzikansky; Emily R. Gallagher; Sonal Admane; Vicki A. Jackson; Constance M. Dahlin; Craig D. Blinderman; Juliet Jacobsen; William F. Pirl; J. Andrew Billings; Thomas J. Lynch

2010-01-01

320

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

321

Mechanism-based Classification of Pain for Physical Therapy Management in Palliative care: A Clinical Commentary  

PubMed Central

Pain relief is a major goal for palliative care in India so much that most palliative care interventions necessarily begin first with pain relief. Physical therapists play an important role in palliative care and they are regarded as highly proficient members of a multidisciplinary healthcare team towards management of chronic pain. Pain necessarily involves three different levels of classification–based upon pain symptoms, pain mechanisms and pain syndromes. Mechanism-based treatments are most likely to succeed compared to symptomatic treatments or diagnosis-based treatments. The objective of this clinical commentary is to update the physical therapists working in palliative care, on the mechanism-based classification of pain and its interpretation, with available therapeutic evidence for providing optimal patient care using physical therapy. The paper describes the evolution of mechanism-based classification of pain, the five mechanisms (central sensitization, peripheral neuropathic, nociceptive, sympathetically maintained pain and cognitive-affective) are explained with recent evidence for physical therapy treatments for each of the mechanisms. PMID:21633629

Kumar, Senthil P; Saha, Sourov

2011-01-01

322

Physical Therapy in Palliative Care: From Symptom Control to Quality of Life: A Critical Review  

PubMed Central

Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients’ suffering. Physiotherapy treatment methods like therapeutic exercise, electrical modalities, thermal modalities, actinotherapy, mechanical modalities, manual physical therapy and assistive devices are useful for a range of life-threatening and life-limiting conditions like cancer and cancer-associated conditions; HIV; neurodegenerative disorders like amyotrophic lateral sclerosis, multiple sclerosis; respiratory disorders like idiopathic pulmonary fibrosis; and altered mental states. The professional armamentarium is still expanding with inclusion of other miscellaneous techniques which were also proven to be effective in improving quality of life in these patients. Considering the scope of physiotherapy in India, and in palliative care, professionals in a multidisciplinary palliative care team need to understand and mutually involve toward policy changes to successfully implement physical therapeutic palliative care delivery. PMID:21218003

Kumar, Senthil P; Jim, Anand

2010-01-01

323

Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies  

PubMed Central

Background Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa. Methods Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviews with key informants, observations of clinical encounters and the local health and social care context, and routine data from local reports and statistics. Results We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home. In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks. Conclusions Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision. PMID:21569423

2011-01-01

324

The Pain Relief Promotion Act of 1999: a serious threat to palliative care.  

PubMed

Recent educational efforts in the US medical community have begun to address the critical issue of palliative care for terminally ill patients. However, a newly introduced bill in Congress, the Pain Relief Promotion Act of 1999 (PRPA), could dramatically hinder these efforts if enacted. The act criminally punishes the use of controlled substances to cause-or assist in causing-a patient's death. The primary purposes of PRPA are to override the physician-assisted suicide law currently in effect in Oregon and prohibit other states from enacting similar laws. The act also includes valuable provisions for better research and education in palliative care, but the benefits of those provisions are outweighed by the punitive sections of the act. Under PRPA, the quality of palliative care in the United States could be compromised when physicians, fearing criminal prosecution, err on the side of caution rather than risk their patients' deaths by using highly aggressive pain treatments. Furthermore, PRPA would put Drug Enforcement Administration officials, who have no medical expertise, in the position of regulating medical decisions. The act also would interfere with individual states' long-standing authority over medical practice. Finally, PRPA would discourage physicians from engaging in experimentation and innovation in palliative care, again out of concern for crossing the line between relief of suffering and physician-assisted suicide. Other bills have been introduced that go much further than PRPA to encourage palliative care, without its problematic provisions. Regardless of the controversy surrounding physician-assisted suicide in the United States, the need for quality end-of-life care will be far better served if Congress enacts one of these bills rather than PRPA. PMID:10634344

Orentlicher, D; Caplan, A

2000-01-12

325

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

326

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

327

Symptoms and Attitudes of 100 Consecutive Patients Admitted to an Acute Hospice\\/Palliative Care Unit  

Microsoft Academic Search

One hundred patients admitted to an acute hospice\\/palliative care unit in a U.S. teaching hospital were evaluated using a standardized data acquisition tool that assessed the presence of physical symptoms and attitudes concerning admission to such a specialty unit. Patients entering the unit between June 1995 and October 1995 completed the tool within 24 hours of admission. Symptoms reported were

Kai Ng; Charles F. von Gunten

1998-01-01

328

The complexity of family caregiving: Use and perceptions of home telehealth in palliative cancer care  

Microsoft Academic Search

The purpose of this case study was to explore how telehomecare affects the process of family caregiving in palliative cancer care. The telehomecare intervention in the Randomized Controlled Trial from which study participants were selected consisted of specialist Registered Nurses who communicated with patients and families using videophones, with the option of remote monitoring. Qualitative data were collected from face-to-face

Anita Stern

2008-01-01

329

Communication with terminal cancer patients in palliative care: are there differences between nurses and physicians?  

Microsoft Academic Search

The aim of this study was to find whether there were interprofessional differences in specific elements of communication with terminal cancer patients and decision-making processes that concern such patients. Given that interdisciplinary team work is one of the basic values in palliative care, if there are conflicting views between professions on such important issues it is most important to know

A. Levorato; F. Stiefel; C. Mazzocato; E. Bruera

2001-01-01

330

A systematic review of psychosocial interventions for family carers of palliative care patients  

Microsoft Academic Search

BACKGROUND: Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal

Peter L Hudson; Cheryl Remedios; Kristina Thomas

2010-01-01

331

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

332

Nurse and physician inter-rater agreement of three performance status measures in palliative care outpatients  

Microsoft Academic Search

Introduction  Performance status (PS) scales are used widely in oncology practice and research. We compared inter-rater agreement, between\\u000a nurses and physicians, for three commonly used PS scales.\\u000a \\u000a \\u000a \\u000a \\u000a Materials and methods  Patients attending an oncology palliative care clinic were assessed by a physician and nurse who blindly completed Eastern\\u000a Cooperative Oncology Group (ECOG), Karnofsky PS (KPS), and palliative PS (PPS) scales. Patients completed

Camilla Zimmermann; Debika Burman; Shazeen Bandukwala; Dori Seccareccia; Ebru Kaya; John Bryson; Gary Rodin; Christopher Lo

2010-01-01

333

Hospital Variation and Temporal Trends in Palliative and End-of-Life Care in the ICU  

PubMed Central

Objectives Although studies have shown regional and interhospital variability in the intensity of end-of-life care, few data are available assessing variability in specific aspects of palliative care in the ICU across hospitals or interhospital variability in family and nurse ratings of this care. Recently, relatively high family satisfaction with ICU end-of-life care has prompted speculation that ICU palliative care has improved over time, but temporal trends have not been documented. Design/Setting Retrospective cohort study of consecutive patients dying in the ICU in 13 Seattle-Tacoma-area hospitals between 2003 and 2008. Measurements We examined variability over time and among hospitals in satisfaction and quality of dying assessed by family, quality of dying assessed by nurses, and chart-based indicators of palliative care. We used regression analyses adjusting for patient, family, and nurse characteristics. Main Results Medical charts were abstracted for 3,065 of 3,246 eligible patients over a 55-month period. There were significant differences between hospitals for all chart-based indicators (p < 0.001), family satisfaction (p < 0.001), family-rated quality of dying (p = 0.03), and nurse-rated quality of dying (p = 0.003). There were few significant changes in these measures over time, although we found a significant increase in pain assessments in the last 24 hours of life (p < 0.001) as well as decreased documentation of family conferences (p < 0.001) and discussion of prognosis (p = 0.020) in the first 72 hours in the ICU. Conclusions We found significant interhospital variation in ratings and delivery of palliative care, consistent with prior studies showing variation in intensity of care at the end of life. We did not find evidence of temporal changes in most aspects of palliative care, family satisfaction, or nurse/family ratings of the quality of dying. With the possible exception of pain assessment, there is little evidence that the quality of palliative care has improved over the time period studied. PMID:23518869

DeCato, Thomas W.; Engelberg, Ruth A.; Downey, Lois; Nielsen, Elizabeth L.; Treece, Patsy D.; Back, Anthony L.; Shannon, Sarah E.; Kross, Erin K.; Curtis, J. Randall

2013-01-01

334

You are being invited to take part in a research project called the "OptCare study". The purpose of this study is to create and test a  

E-print Network

of this study is to create and test a new palliative care service for frail older people living at home or in a care home. The OptCare study is being carried out in Sussex. It is intended to improve palliative care Principal Investigator Clinical Lecturer in Palliative Care Professor of Palliative Care & Policy King

Kühn, Reimer

335

Reducing Collusion Between Family Members and Clinicians of Patients Referred to the Palliative Care Team  

PubMed Central

Objective: Collusion refers to a secret agreement made between clinicians and family members to hide the diagnosis of a serious or life-threatening illness from the patient. Our goal was to reduce the rate of collusion among the family members of patients referred to our institution's palliative care service such that 80% of patients would be aware of their diagnosis within four weeks of referral to the service. We aimed to achieve this target within six months of starting the project. Methods: We undertook a clinical practice improvement project using the methodology of Brent James et al of Intermountain Health to see how we could reduce collusion among clinicians and family members of patients with advanced-stage cancers. This strategy included creating awareness among patients, family, and clinicians of the problems with collusion from the standpoint of each group; adopting an empathetic and compassionate approach to communication; using pamphlets; seeking patients’ views; empowering families to reveal the truth to patients; and supporting patients and families until the last moment of each patient's life. Results: Between December 2004 and June 2008, 655 patients with advanced-stage cancers were referred to us. We were able to maintain an average awareness rate of nearly 80% of patients starting in February 2005, when we implemented awareness measures. Conclusion: The deeply entrenched cultural practice of collusion can be changed with simple strategies based on the universal principles of medical ethics and best practices. PMID:20740097

Low, James Alvin; Kiow, Sim Lai; Main, Norhisham; Luan, Koh Kim; Sun, Pang Weng; Lim, May

2009-01-01

336

[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

337

'Palliative care': a contradiction in terms? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers  

Microsoft Academic Search

BACKGROUND: Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background. METHODS: A qualitative design was used as we were looking

Fuusje M de Graaff; Anneke L Francke; Maria ETC van den Muijsenbergh; Sjaak van der Geest

2010-01-01

338

Lessons learned from a collaborative meeting to construct a palliative care protocol.  

PubMed

As the treatment of advanced illness necessitates a multidimensional and culturally sensitive approach, a conference of international leaders in affected disciplines (quality of life research, ethno-cultural variability, palliative medicine, surgical oncology, gastroenterology, major consortium research, medical ethics, and patient advocacy/cancer survivors) was organized to provide the necessary expertise and broad ethnic and racial perspectives. During the course of the two-day conference, participants first deliberated in small groups focused on specific areas of concern to palliative care research: outcome measures, ethical dilemmas, barriers, and solutions, cross-cultural issues, palliative care study implementation, and protocol development. Each group presented the results of their meetings, and the conference as a whole worked out the final details of a research protocol for malignant bowel obstruction. Lessons learned in the process of conceiving and organizing the meetings, implementing, and disseminating the results of the conference provide insight into the usefulness of this method for developing workable palliative care research methodologies. PMID:17544248

Krouse, Robert S

2007-07-01

339

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

340

The Hospice: Experience of the Palliative Care Unit of Circolo di Busto Arsizio Hospital  

Microsoft Academic Search

Palliative care is a multidisciplinary therapeutic approach able to improve the quality of life of patients and family members\\u000a faced with an incurable disease through the control of symptoms and the psychophysical changes of accompaniment. The main\\u000a aim is to improve the life quality of rather than its duration by guaranteeing continuous and total care of the dying patient.\\u000a The

P. Zoia; V. Reina; R. Maimone Baronello

2009-01-01

341

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

PubMed Central

Background Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team. In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations. Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation. Methods/design This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations. PMID:22471327

2012-01-01

342

Building the palliative care evidence base: Lessons from a randomized controlled trial of oxygen vs room air for refractory dyspnea.  

PubMed

Palliative care is increasingly seen as a standard component of high-quality comprehensive cancer care. However, several challenges remain to its widespread integration into clinical oncology practice, including workforce problems, reimbursement concerns, and a fledgling evidence base. This article discusses issues surrounding evidence base development in palliative cancer care, using the example of a recently published randomized controlled trial of oxygen versus room air. The Oxygen Trial randomized patients with refractory dyspnea and adequate Pao2 to oxygen or room air, administered via nasal cannula. Both groups experienced improvements in self-rated dyspnea scores, but no statistical differences were seen between intervention arms. These results suggest that supplementary oxygen is often unnecessary in the palliative setting, and that room air is similarly efficacious. This example highlights the importance and need for ongoing development of the evidence base in palliative medicine. The Palliative Care Research Cooperative (PCRC) is a novel National Institute of Nursing Research-funded research infrastructure that seeks to expand the palliative care evidence base. Its first multisite trial was recently completed, assessing the pragmatic question of whether statin medications can be safely discontinued in end-of-life settings. The PCRC will be a vehicle through which a high-quality evidence base will continue to expand and develop. Such ongoing research efforts are needed to inform and improve palliative care practice. PMID:24994919

LeBlanc, Thomas W; Abernethy, Amy P

2014-07-01

343

In their own words: Patients and families define high-quality palliative care in the intensive care unit*  

PubMed Central

Objective Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important “stakeholders,” define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care. Design Qualitative study using focus groups facilitated by a single physician. Setting A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical–surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans’ Affairs hospital in a northeastern city. Patients Randomly-selected patients with intensive care unit length of stay ?5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit. Interventions None. Measurements and Main Results Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients’ preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important. Conclusions Efforts to improve intensive care unit palliative care quality should focus on domains and processes that are most valued by critically ill patients and their families, among whom we found broad agreement in a diverse sample. Measures of quality and effective interventions exist to improve care in domains that are important to intensive care unit patients and families. PMID:20198726

Nelson, Judith E.; Puntillo, Kathleen A.; Pronovost, Peter J.; Walker, Amy S.; McAdam, Jennifer L.; Ilaoa, Debra; Penrod, Joan

2011-01-01

344

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

345

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

PubMed

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

Huffman, Joan L

2005-04-01

346

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

347

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

Microsoft Academic Search

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

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

2010-01-01

348

Giving hope to families in palliative care and implications for practice.  

PubMed

Caring for a dying child and the family is one of the greatest nursing challenges. The way in which care is delivered will shape the experience they are about to face. Hope plays a crucial role in helping people cope, and healthcare professionals can foster appropriate hopes ethically, while maintaining open and honest communication. If palliative care is discussed with clients and families from the time of diagnosis, they can face realistic decisions better and not feel that they are 'giving up'. They need to know that everything possible is being done to improve the quality of the time left to them. PMID:24914668

Smith, Helen

2014-06-01

349

Parents' perceptions of a pediatric palliative program.  

PubMed

Reports of family satisfaction with pediatric palliative care have been limited. This knowledge is critical for both program development and furthering understanding of needs. The purpose of this study was to assess parents' perceptions about whether a pediatric palliative care program was providing key elements of pediatric palliative care as described in the literature and to assess parental satisfaction with services. Data were collected from 65 parents, using a tool developed for the project, whose children died while receiving services from Rainbow Kids Palliative Care, a program of Primary Children's Medical Center, and the Department of Pediatrics, University of Utah, Salt Lake City, Utah. Respondents reported that the Rainbow Kids team had provided emotional support, helped with decision making and communication, and that their children's symptoms were managed. Furthermore, parent respondents expressed high levels of satisfaction with services from the Rainbow Kids team. PMID:22696532

Sheetz, M Joan; Bowman, Mary-Ann Sontag

2013-05-01

350

Principles of Wound Care in Hospice and Palliative Medicine  

Microsoft Academic Search

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

Musharraf Navaid; Terry Melvin; Judy Berube; Sherri Dotson

2010-01-01

351

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

Microsoft Academic Search

BACKGROUND: General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a

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

2007-01-01

352

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care  

Microsoft Academic Search

Background: Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. Methods: As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's

Karen W. Carroll; Cynthia J. Mollen; Sarah Aldridge; Kari R. Hexem; Chris Feudtner

2012-01-01

353

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

354

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

PubMed

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

2014-02-01

355

Perspectives from the frontlines: palliative care providers' expectations of Canada's compassionate care benefit programme.  

PubMed

Recognising their valuable role as key informants, this study examines the perspectives of front-line palliative care providers (FLPCP) regarding a social benefit programme in Canada designed to support family caregivers at end-of-life, namely the Compassionate Care Benefit (CCB). The CCB's purpose is to provide income assistance and job security to family caregivers who take temporary leave from employment to care for a dying family member. Contributing to an evaluative study that aims to provide policy-relevant recommendations about the CCB, this analysis draws on semi-structured interviews undertaken in 2007/2008 with FLPCPs (n = 50) from across Canada. Although participants were not explicitly asked during interviews about their expectations of the CCB, thematic content analysis revealed 'expectations' as a key finding. Through participants' discussions of their knowledge of and familiarity with the CCB, specific expectations were identified and grouped into four categories: (1) temporal; (2) financial; (3) informational; and (4) administrative. Findings demonstrate that participants expect the CCB to provide: (1) an adequate length of leave time from work, which is reflective of the uncertain nature of caregiving at end-of-life; (2) adequate financial support; (3) information on the programme to be disseminated to FLPCPs so that they may share it with others; and (4) a simple, clear, and quick application process. FLPCPs hold unique expertise, and ultimately the power to shape uptake of the CCB. As such, their expectations of the CCB contribute valuable knowledge from which relevant policy recommendations can be made to better meet the needs of family caregivers and FLPCPs alike. PMID:20584086

Giesbrecht, Melissa; Crooks, Valorie A; Williams, Allison

2010-11-01

356

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 completed the course showed that the learning experience as well as retention was improved with the integrated mode of teaching. Integrating basic and clinical sciences in therapeutic courses is an effective learning strategy. PMID:23966724

Kullgren, Justin; Unni, Elizabeth; Hanson, Eric

2013-01-01

357

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

Przyslo, Lukasz; Kedzierska, Bogna; Stolarska, Malgorzata; Mlynarski, Wojciech

2013-01-01

358

Work and health conditions of nursing staff in palliative care and hospices in Germany  

PubMed Central

Aims of this representative study were to assess the relevant differences between the work and organisational characteristics as well as the subjective resources and health status of nurses occupied in hospice care, compared to nurses from palliative stations. Further, the assessment of the predictive correlations between the work situation of this nurses as a factor influencing their health and perceived strains was also a leading intention. Method: In a written survey conducted in Germany in 2001, 820 nursing staff of 113 palliative stations and stationary hospices were included. A qualified diagnostic procedure for the assessment of health promoting work was implemented. In order of obtaining a secure comparison, a sample of 320 nurses working in 12 homes for old people in Saxony was also considered. Results: The nurses referred generally to favourable working conditions, still they informed about deficiencies in the perceived participation, organizational benefits and experienced gratification. Hospice nurses experienced overall more favourable work conditions than palliative nurses or than the staff of homes for old people (regarding identification with the institution, organizational benefits, accurate gratification and little time pressure during work). Hospice personnel were psychologically and physically healthier than the staff of palliative stations. Important predictors for health stability that could be assessed by multiple regression analysis were: positively evaluated work contents, the identification with the institution, little time pressure and a positive working atmosphere. Conclusions: The assessed organisational framework is generally more favourable in the institutions of professional terminal care than in common hospitals and homes for old people. Therefore, the conditions in hospices could have a modelling function for the inner-institutional work organisation and for the anchorage of the intrinsic motivation of nurses in the health care system. PMID:19742056

Schroder, Christina; Bansch, Alexander; Schroder, Harry

2004-01-01

359

WHO Collaborating Centre for Palliative Care & Older People  

E-print Network

, cohort) � Quasi-experimental � acts as if experiment but not random allocation � Experimental studies � Epidemiology � Overview of designs � Examples to study access and care delivery (effects on older people, culture) � Cross sectional (especially analysis of large data sets) � Cohort � Quasi-experimental

Kühn, Reimer

360

Are Special Ethical Guidelines Needed For Palliative Care Research?  

Microsoft Academic Search

Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in

David J Casarett; Jason H. T Karlawish

2000-01-01

361

Expanding palliative care nursing education in California: the ELNEC Geriatric project.  

PubMed

In the past decade, the Robert Wood Johnson Foundation's 2002 report Means to a Better End: A Report on Dying in America Today and other studies brought attention to deficiencies in care of the dying in the USA. Palliative care's mandate is to promote a 'good death' through expert symptom management and compassionate care that addresses the psychosocial needs and dignity of persons at the end of life. The End-of-Life Nursing Education Consortium (ELNEC) Geriatric 'train-the-trainer' project was launched in 2007 to increase the knowledge and educational skills of nurses and unlicensed staff providing end-of-life care for older adults in nursing homes, skilled nursing facilities, long-term care, and hospices. From 2007 through 2009, 351 California-based nurses and nursing home staff attended one of four ELNEC Geriatric courses. This paper describes programme development, implementation, follow-up evaluations, and examples of participants' use of the ELNEC Geriatric curriculum. PMID:21537321

Kelly, Kathe; Thrane, Susan; Virani, Rose; Malloy, Pam; Ferrell, Betty

2011-04-01

362

Management of Non-Pain Symptoms in Pediatric Palliative Care  

Microsoft Academic Search

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

Stefan J. Friedrichsdorf; John J. Collins

2007-01-01

363

Emerging breast cancer epidemic: impact on palliative care  

Microsoft Academic Search

Imagine that you are poor and living in Africa, you develop breast cancer, your country has no oncology service, no prevention, early detection or treatment, and the strongest analgesic is paracetamol. You are lucky just to be found under these circumstances. Th is is the plight of thousands of women and some men in Africa today. And yet to control

Anne Merriman

2010-01-01

364

Measuring hospice care: the National Hospice and Palliative Care Organization National Hospice Data Set  

Microsoft Academic Search

Hospice has seen rapid growth in recent years, but there is a lack of consistency among hospices when it comes to compliance with standards of care. Consequently, hospices vary in performance and in services they provide. With state hospice organizations, the NHPCO developed a National Data Set (NDS) intended to understand demographics, practices, and outcomes; illustrate industry effectiveness; facilitate communication

Stephen R. Connor; Martha Tecca; Judi LundPerson; Joan Teno

2004-01-01

365

On the notion of home and the goals of palliative care.  

PubMed

The notion of home is well known from our everyday experience, and plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. This paper is based upon the intuitively positive connotation of the term "home." By metaphorically describing the goal of palliative care as "the patient's coming home," it wants to contribute to a medical humanities approach of medicine. It is argued that this metaphor can enrich our understanding of the goals of palliative care and its proper objectives. Four interpretations of "home" and "coming home" are explored: (1) one's own house or homelike environment, (2) one's own body, (3) the psychosocial environment, and (4) the spiritual dimension, in particular, the origin of human existence. Thinking in terms of coming home implies a normative point of view. It represents central human values and refers not only to the medical-technical and care aspects of health care, but also to the moral context. PMID:19943192

Dekkers, Wim

2009-01-01

366

Palliative care: views of patients and their families  

Microsoft Academic Search

OBJECTIVE--To investigate the current problems and needs of terminally ill cancer patients and their family members, and to discover their views of hospital, community, and support team services. DESIGN--Prospective study of patients and families by questionnaire interviews in the patients' homes. SETTING--Inner London and north Kent (London suburbs). SUBJECTS--65 Patients, each with a member of their family or a career.

I Higginson; A Wade; M McCarthy

1990-01-01

367

Perinatal and pediatric issues in palliative and end-of-life care from the 2011 Summit on the Science of Compassion.  

PubMed

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, Jonne M; Brooten, Dorothy

2012-01-01

368

Using a LISTSERV™ to Develop a Community of Practice in End-of-Life, Hospice, and Palliative Care Social Work  

Microsoft Academic Search

An e-mail discussion group (SW-PALL-EOL) connects the growing number of social workers interested in palliative and end-of-life care. The article discusses the concept of a technology supported “Community of Practice.” Using content analysis, the article shows empirically how this electronic discussion group has contributed to the growth and expansion of a Community of Practice dedicated to improving palliative and end-of-life

Susan A. Murty; Kaleigh Gilmore; Karen A. Richards; Terry Altilio

2012-01-01

369

Research priorities in geriatric palliative care: nonpain symptoms.  

PubMed

Research addressing the burden, assessment, and management of nonpain symptoms associated with advanced illness in older adults is limited. While nonpain symptoms such as fatigue, sleep, dyspnea, anxiety, depression, cognitive impairment, nausea, and anorexia-cachexia are commonly noted by patients and clinicians, research quantifying their effects on quality of life, function, and other outcomes are lacking and there is scant evidence regarding management. Most available studies have focused on relatively narrow conditions (e.g., chemotherapy-induced nausea) and there are almost no data relevant to patients with multiple morbidities or multiple concurrent symptoms. Assessment and treatment of nonpain symptoms in older adults with serious illness and multiple comorbidities is compromised by the lack of data relevant to their care. Recommended research priorities address the documented high prevalence of distressing symptoms in older adults with serious illness, the unique needs of this population due to coexistence of multiple chronic conditions along with physiologic changes related to aging, the lack of evidence for effective pharmacologic and nonpharmacologic interventions, and the need for validated measures that are relevant across multiple care settings. PMID:23888305

Combs, Sara; Kluger, Benzi M; Kutner, Jean S

2013-09-01

370

Research Priorities in Geriatric Palliative Care: Nonpain Symptoms  

PubMed Central

Abstract Research addressing the burden, assessment, and management of nonpain symptoms associated with advanced illness in older adults is limited. While nonpain symptoms such as fatigue, sleep, dyspnea, anxiety, depression, cognitive impairment, nausea, and anorexia-cachexia are commonly noted by patients and clinicians, research quantifying their effects on quality of life, function, and other outcomes are lacking and there is scant evidence regarding management. Most available studies have focused on relatively narrow conditions (e.g., chemotherapy-induced nausea) and there are almost no data relevant to patients with multiple morbidities or multiple concurrent symptoms. Assessment and treatment of nonpain symptoms in older adults with serious illness and multiple comorbidities is compromised by the lack of data relevant to their care. Recommended research priorities address the documented high prevalence of distressing symptoms in older adults with serious illness, the unique needs of this population due to coexistence of multiple chronic conditions along with physiologic changes related to aging, the lack of evidence for effective pharmacologic and nonpharmacologic interventions, and the need for validated measures that are relevant across multiple care settings. PMID:23888305

Combs, Sara; Kluger, Benzi M.

2013-01-01

371

Nursing management of nutrition in cancer and palliative care.  

PubMed

Malnutrition is prevalent in patients with cancer. This can have deleterious effects including reduced response to treatment, diminished quality of life, increased length of hospital stay and decreased survival. It is, therefore, imperative that thorough nutritional screening is carried out by nurses on patients' admission and during their hospital stay to detect those who are malnourished or at risk of malnutrition in order to plan their nutritional care effectively. Cancer cachexia is the progressive weight loss and emaciation seen in cancer patients, particularly in advanced disease, which can have a devastating effect on the physical, psychological, social and spiritual aspects of the patient's life. Therefore, the aims of nutritional care are identified depending on the stage of the patient's illness and recommendations made for nursing, pharmacological and nutritional intervention. These include nursing comfort strategies, the use of recommended pharmacological agents and dietary interventions such as experimenting with different foods, textures, portion sizes and nutritional supplements. The use of fish oil-enhanced nutritional supplements and artificial nutritional support is also discussed. Consideration is also given to the legal and ethical aspects of providing nutrition and nutritional support. PMID:12829966

Holder, Helen

372

Taking an "upstream" approach in the care of dying cancer patients: the case for a palliative approach.  

PubMed

Advances in technology and drug therapy have resulted in cancer patients living longer with malignant disease. However, most of these patients will face the end of life much sooner than the general population. Adopting a "palliative approach" is one innovation that has the potential to promote anticipatory planning and promote enhanced end-of-life care. Yet, in much of the western world, this upstream orientation has rarely been achieved. An emphasis on providing palliative care late in the illness trajectory has resulted in many challenges for the care of people with advanced cancer. We highlight a nursing research initiative, The Initiative for a Palliative Approach in Nursing: Evidence and Leadership (iPANEL), that aims to develop evidence to inform the integration of a palliative approach into the care of people with advancing chronic life-limiting conditions. Oncology nurses have an important role to play in facilitating a palliative approach, transforming the ways in which cancer patients are cared for within our health care system. PMID:25189052

Stajduhar, Kelli I; Tayler, Carolyn

2014-01-01

373

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

PubMed Central

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

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

2013-01-01

374

Utilizing participation in meaningful occupation as an intervention approach to support the acute model of inpatient palliative care.  

PubMed

Palliative care is a model of care that aims to improve quality of life (QOL) for patients and their families/carers who are facing the challenges associated with a life limiting illness (WHO, 2012). Until recently, palliative care has been seen to be largely focused on the medical management of specific symptoms, with little or no consideration given to the patient's occupational identity and goals. Occupational therapy is a profession whose core philosophy is grounded in occupational participation. Occupational therapists have the skills and expertise to incorporate an individual's occupational performance goals into their treatment plan, thereby helping people to participate in personally meaningful occupations, within the limitations of their illness and physical capacity. The present article aims to illustrate (using case-study examples) how personally meaningful occupational participation can better support an acute model of palliative care practice, resulting in better patient outcomes and improved quality of life for both patients and their carers. PMID:24138834

Ashworth, Erin

2014-10-01

375

Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers.  

PubMed

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. PMID:15334529

Milberg, Anna; Strang, Peter

2004-09-01

376

Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy  

PubMed Central

Background Patients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations. Methods/design This mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of ?0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context. Discussion The data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa. ClinicalTrials.gov Identifier: NCT01608802 PMID:23130740

2012-01-01

377

[The role of home palliative care by health insurance pharmacy].  

PubMed

Our Pharmacy has been practicing pharmaceutical management guidance for 69 homecare patients in the last 13 years. After we started a home parenteral nutrition service, an opportunity to work with the end-stage cancer patient was increased. To contribute to the patient and community health team, we have practiced pharmaceutical management guidance for homecare patient based on the medical and pharmacology point of view with other area of occupational people. We distributed a pain diary and medical usage of drug guidance to the end-stage cancer outpatients. We also made a drug instructional manual and provided a proper prescription to the patient. Because of our efforts, we believe that we had good consistent results from the end-stage cancer outpatients. On the other hand, we have a lot of problems that have to be resolved. They are associated with medical treatment fee, drug dispensing fee, pharmacy management pressure felt from a low dispensing fee, poor quality stocked narcotic drugs and a low recognition of the pharmacist from the patients and regional community medical team. We believe that we can contribute more to the patients, if we can overcome these problems. PMID:22189320

Kato, Taneko

2011-12-01

378

Service quality in health care.  

PubMed

Although US health care is described as "the world's largest service industry," the quality of service--that is, the characteristics that shape the experience of care beyond technical competence--is rarely discussed in the medical literature. This article illustrates service quality principles by analyzing a routine encounter in health care from a service quality point of view. This illustration and a review of related literature from both inside and outside health care has led to the following 2 premises: First, if high-quality service had a greater presence in our practices and institutions, it would improve clinical outcomes and patient and physician satisfaction while reducing cost, and it would create competitive advantage for those who are expert in its application. Second, many other industries in the service sector have taken service quality to a high level, their techniques are readily transferable to health care, and physicians caring for patients can learn from them. PMID:10029131

Kenagy, J W; Berwick, D M; Shore, M F

1999-02-17

379

Demographic, Symptom, and Medication Profiles of Cancer Patients Seen by a Palliative Care Consult Team in a Tertiary Referral Hospital  

Microsoft Academic Search

In this retrospective study, the charts of 100 consecutive cancer patients who had been referred to a palliative care consult team within a tertiary acute care hospital were reviewed. Demographic characteristics, including reason for admission and disease status upon admission, length of stay, and discharge and admission location, were recorded. Symptom acuity, cognitive status, and risk for substance abuse were

Catherine A Jenkins; Margot Schulz; John Hanson; Eduardo Bruera

2000-01-01

380

Palliative Care and the Need for Education--Do We Know What Makes a Difference? A Limited Systematic Review  

ERIC Educational Resources Information Center

Caring for patients with progressive illness who need symptomatic and palliative care involves professionals as well as non-professionals. Within the variety of settings that may exist around a patient, education will be constantly needed. A limited systematic review was therefore conducted in order to highlight factors that influence informal…

Bugge, Ellen; Higginson, Irene J.

2006-01-01

381

Development and Evaluation of a Staff Training Program on Palliative Care for Persons with Intellectual and Developmental Disabilities  

ERIC Educational Resources Information Center

Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop,…

Hahn, Joan E.; Cadogan, Mary P.

2011-01-01

382

[Voluntary Refusal of Food and Fluid in palliative care: a mapping literature review].  

PubMed

Voluntary Refusal of Food and Fluid (VRFF) is one possibility for patients in palliative situations to hasten death and avoid further suffering. By means of a mapping literature review this article describes the medical, nursing, ethical and legal perspective of care for people who wish to hasten death using VRFF. The results show that the wish to die is affected by psychological, social, spiritual and physical factors. VRFF is a little-known, legal and independently viable method to hasten death. Reducing fluid intake to 40 ml daily, the dying process takes one to three weeks. VRFF can be regarded as a natural death, foregoing treatment or as suicide. In contrast to physician assisted suicide or euthanasia, patients dying by VRFF experience a "natural" dying process and the decision is reversible in the first few days. As authority to act lies with the person wishing to die professionals and family caring for the dying are practicing palliative care, as opposed to assisted suicide or euthanasia. Professionals and family involved in the decision-making process are confronted with various ethical problems. Further research concerning VRFF and its implications for practice is necessary. PMID:24297830

Klein Remane, Ursula; Fringer, André

2013-12-01

383

Embrace: addressing anticipatory grief and bereavement in the perinatal population: a palliative care case study.  

PubMed

Anticipatory grief is experienced by families who are informed that their unborn child may not survive in utero or during or after delivery. The child who survives delivery, but is critically ill, brings a combination of emotions to the family: joy in welcoming a new life and fear for the future. The healthcare team members caring for the patient and family often witness this grief and are impacted. In the perinatal setting, the care continuum for these patients begins at diagnosis, typically in the prenatal setting, and continued support extends beyond the presumed life expectancy of the child. This case study is provided to demonstrate the utilization of a palliative care interdisciplinary approach to meeting the complex bereavement needs of a family who was expecting a child with a life-impacting congenital condition. PMID:21311273

Bennett, Joann; Dutcher, Janet; Snyders, Michele

2011-01-01

384

Good palliative care for a patient with schizophrenia dying of emphysema and heart failure.  

PubMed

Psychiatrists can offer much to the care of people who are chronically mentally ill and who are dying of a medical illness. In community psychiatry, the psychiatrist and other members of the treatment team often care for patients over many years, and gradually learn about patients' wishes and preferences, strengths and limitations, and areas of support and lack thereof. This database joins together with the psychiatrist's capacity for empathy to provide many of the necessary elements for palliative care during the final phases of these patients' lives. This composite case illustrates the treatment of a gentleman whose chronic schizophrenia was fairly well controlled until his pulmonary and cardiac disease began to progress rapidly. PMID:20532029

Griffith, Linda J

2007-08-01

385

'Palliative care': a contradiction in terms? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers  

PubMed Central

Background Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background. Methods A qualitative design was used as we were looking for the personal views of 'very ill' cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 83 people, involved in 33 cases to obtain information about their views, values and norms on 'good care'. Results The main concerns about 'good care' expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient. Conclusions Patients and their families with a Turkish or Moroccan background often have different ideas about 'good care' than their Dutch care providers. As many of them are aiming at cure until the end of life, they find 'good palliative care' a contradiction in terms. PMID:20831777

2010-01-01

386

Music therapy in palliative medicine  

Microsoft Academic Search

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

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

2001-01-01

387

Concepts and definitions for "supportive care," "best supportive care," "palliative care," and "hospice care" in the published literature, dictionaries, and textbooks  

PubMed Central

Purpose Commonly used terms such as “supportive care,” “best supportive care,” “palliative care,” and “hospice care” were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms. Methods We searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched. Results Nine of 32 “SC/BSC,” 25 of 182 “PC,” and 12 of 42 “HC” articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. “SC” focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, “HC” focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both “PC” and “SC/BSC” were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for “SC/BSC,” “PC,” and “HC,” respectively. “SC/BSC” was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings. Conclusion We identified defining concepts for “SC/BSC,” “PC,” and “HC” and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions. PMID:22936493

Hui, David; De La Cruz, Maxine; Mori, Masanori; Parsons, Henrique A.; Kwon, Jung Hye; Torres-Vigil, Isabel; Kim, Sun Hyun; Dev, Rony; Hutchins, Ronald; Liem, Christiana; Kang, Duck-Hee; Bruera, Eduardo

2013-01-01

388

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

PubMed Central

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

2014-01-01

389

Palliative Care  

MedlinePLUS

... ALS Alzheimer’s Disease Breast Cancer Cancer Chronic Obstructive Pulmonary Disease (COPD) Colon Cancer Congestive Heart Failure Dementia Head ... ALS Alzheimer’s Disease Breast Cancer Cancer Chronic Obstructive Pulmonary Disease (COPD) Colon Cancer Congestive Heart Failure Dementia Head ...

390

Palliative Care  

Microsoft Academic Search

An 85-year-old man with New York Heart Association class IV heart failure, hyperten- sion, and moderate Alzheimer's disease is admitted to the hospital after a hip fracture. His postoperative course is complicated by pneumonia, delirium, and pressure ulcers on his heels and sacrum. He is losing weight and is unable to participate in rehabilita- tion because of his confusion. This

R. Sean Morrison; Diane E. Meier

2004-01-01

391

Exploring States of Panacea and Perfidy of Family and Community Volunteerism in Palliative Care Giving in Kanye CHBC Program, Botswana  

PubMed Central

Aim: The study aims to explore the attitudes and perceptions of family and community palliative care givers pertaining to volunteerism. Objective: The main objective is to involve palliative caregivers and their supervisors in assessing their contribution to care and evaluate their state of volunteerism. Materials and Methods: The study attracted qualitative design and involved 82 palliative caregivers in 10 focus group discussions; one-to-one interviews with the nurses supervising them. Two slightly different interview guides were used as research instruments. Results: Findings indicate that palliative care giving volunteerism is motivated and sustained by: (1) Principles of love emanating from blood and kinship relations; (2) Patriotism and community responsibility over one another; (3) Adherence and respect of their culture and government call. Volunteerism was also found challenged by: (1) Predominance of the elderly and lowly educated women; (2) Poverty and heavy caseload; (3) Being shunned by the youth; (4) And lack of morale, recognition and motivation. Recommendations: The study recommends: (1) Socializing boys early enough in life into care giving; (2) Offering incentives to the caregivers; (3) Use of public forums to persuade men to accept helping women in carrying out care giving duties; (4) And enlisting support of all leaders to advocate for men’s involvement in care giving. PMID:20859466

Kangethe, Simon

2010-01-01

392

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

PubMed Central

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

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

2014-01-01

393

Relationships between the characteristics of oncohematology services providing palliative care and the sociodemographic characteristics of caregivers using health indicators: social support, perceived stress, coping strategies, and quality of work life  

Microsoft Academic Search

Objective  The aim of this study was to analyze the relationships between the characteristics of the management of oncohematology services\\u000a and the psychosocial determinants of caregivers’ health at work including social support, stress, and coping strategies.\\u000a \\u000a \\u000a \\u000a \\u000a Design  Investigation using questionnaires was carried out about nurses and nurse aides in hematology and oncology services.\\u000a \\u000a \\u000a \\u000a Setting  All hematology and oncology services of Western France were

Anne-Marie Pronost; Amélie Le Gouge; Daniele Leboul; Martine Gardembas-Pain; Christian Berthou; Bruno Giraudeau; Evelyne Fouquereau; Philippe Colombat

394

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

PubMed Central

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

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

2013-01-01

395

Palliative care: a case study and reflections on some spiritual issues.  

PubMed

Being aware of notions of spirituality and ethnicity are perhaps at no time as important in nursing as at the end of a patient's life. This paper reflects on a case study of a patient receiving palliative care who was a nurse from Africa. One key reflection that arose from this case is 'what is spirituality?' How this is expressed is a dynamic process, and cannot necessarily be captured by a one-off question and answer session. The following case study highlights that what we want at the end of life, or may think we would want is not at all fixed. Therefore, nurses caring for dying patients need to be open-minded, and check regularly that the patient's chosen pathway is being followed. Also, there must be space for patients to change their minds. Tools are available and might be usefully adapted to suit individual patients' needs. PMID:20220674

Ireland, Jillian

396

Amyotrophic lateral sclerosis and palliative care: where we are, and the road ahead.  

PubMed

Patients with amyotrophic lateral sclerosis (ALS) have high symptom burdens, including pain, fatigue, dyspnea, and sialorrhea, and they must make difficult decisions about the use of life-prolonging therapies, such as long-term mechanical ventilation. The impact of ALS is also felt by family caregivers who often struggle to meet the heavy physical, financial, and emotional demands associated with the illness. Expert multidisciplinary care may improve both quality and length of life of patients with ALS. However, although advances have been made in the treatment of some symptoms, others, including pain management, remain poorly studied. Involvement of palliative care specialists as part of the ALS multidisciplinary team is recommended, as we continue to work toward improving the quality of life for patients and their families. PMID:22334165

Blackhall, Leslie J

2012-03-01

397

42 CFR 440.140 - Inpatient hospital services, nursing facility services, and intermediate care facility services...  

Code of Federal Regulations, 2011 CFR

...false Inpatient hospital services, nursing facility services, and intermediate care facility services for individuals...140 Inpatient hospital services, nursing facility services, and intermediate care facility services for...

2011-10-01

398

42 CFR 440.140 - Inpatient hospital services, nursing facility services, and intermediate care facility services...  

Code of Federal Regulations, 2013 CFR

...false Inpatient hospital services, nursing facility services, and intermediate care facility services for individuals...140 Inpatient hospital services, nursing facility services, and intermediate care facility services for...

2013-10-01

399

42 CFR 440.140 - Inpatient hospital services, nursing facility services, and intermediate care facility services...  

Code of Federal Regulations, 2010 CFR

...false Inpatient hospital services, nursing facility services, and intermediate care facility services for individuals...140 Inpatient hospital services, nursing facility services, and intermediate care facility services for...

2010-10-01

400

42 CFR 440.140 - Inpatient hospital services, nursing facility services, and intermediate care facility services...  

Code of Federal Regulations, 2012 CFR

...false Inpatient hospital services, nursing facility services, and intermediate care facility services for individuals...140 Inpatient hospital services, nursing facility services, and intermediate care facility services for...

2012-10-01

401

[Concepts for a demand-oriented structuring of palliative care in the German Health Care System: the example of Lower Saxony].  

PubMed

Palliative care can be considered a holistic care approach for patients faced with incurable and progressive diseases in their last period of life. In this context, structural, cultural and content-related deficits are increasingly taken into account in the German health care system, however, there is a lack of scientific data. Therefore, it was the objective of an expert team at Hannover Medical School to analyse the current situation of palliative care in Lower Saxony from the perspective of health system research and to give recommendations for its further development, based on empirical studies in Lower Saxony and on a systematic national and international literature review. The study revealed that the main shortcomings were an unclear structuring and an inadequate definition with respect to other areas of care, a fundamental lack of integration in regard of routine processes of care and a lack of thorough tools for needs assessments. Therefore, a concept for the integration of palliative care in the care processes of cancer patients was developed and the specific need for hospice beds in regional districts was calculated by using parameters representing provision-related and epidemiological/demographic conditions. In comparison to current structures, an assessment of over- and undersupply as well as specific recommendations how to optimize palliative care were provided for politicians, payers and providers in Lower Saxony. PMID:16308806

Schneider, N; Buser, K; Janus, K; Brandes, I; Amelung, V E

2005-11-01

402

We are pleased to announce a McGill University-wide call for applications for the David McCutcheon Fellowship in Pediatric Palliative Care. Applications are due July 1, 2012 for funds to be taken up by  

E-print Network

Cutcheon Fellowship in Pediatric Palliative Care. Applications are due July 1, 2012 for funds to be taken up by September 2012. ********* David McCutcheon Fellowship in Pediatric Palliative Care A fellowship to develop research excellence in pediatric palliative care CALL FOR APPLICATIONS GOAL OF THE FELLOWSHIP This Mc

Shoubridge, Eric

403

The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): Views About Legalization of Death With Dignity and Euthanasia Among the Bereaved Whose Family Member Died at Palliative Care Units  

Microsoft Academic Search

There has been a debate in appropriateness of legalization of death with dignity and euthanasia in Japan. To clarify views about these issues, we conducted a large nationwide study of the bereaved whose family member died at palliative care units. The percentages of 429 bereaved family members (response rate 65%) who affirmed legal authorization were 52 for death with dignity

Nao Okishiro; Mitsunori Miyashita; Satoru Tsuneto; Kazuki Sato; Yasuo Shima

2009-01-01

404

Consumerism in Health Care Services  

ERIC Educational Resources Information Center

Discusses the current trend toward a corporate health care system in which services are often paid for by a third party (insurance company or government). Says this results in the consumer's loss of control over the quality and type of health care rendered. Recommends adoption of a federated health care system. (GC)

Carmichael, Lynn P.

1977-01-01

405

[Nursing staff's knowledge and attitudes concerning preventive oral hygiene in palliative care].  

PubMed

Preventive mouth care is essential for the well-being of palliative care patients, though it is not performed enough outside units devoted to these patients. Our study aimed at getting a better knowledge of carers' attitudes and knowledge regarding this basic care. A validated questionnaire was sent anonymously to nurses and nursing aides working in the medical units of ten hospitals in Brittany. Of the 2,467 questionnaires sent, 54% were validated for use. The years of experience have little influence on nursing staff's answers. One in twenty does not think that preventive mouth care is part of his/her duties. This care is considered unpleasant, and difficult, by 11% and 22% of nurses, and 13.5% and 20.5% of nursing aides, respectively. A lack of knowledge is openly expressed with regards to oral diseases and dental prostheses. More than one in four cannot say if he/she knows the functions of the mouth, or he/she can identify a healthy mouth. These results show the scope for improvement as well as the priorities. They will be used as baseline for our future program assessment. PMID:25080626

Belloir, Marie-Noëlle; Riou, Françoise

2014-06-01