Specialist palliative care in nonmalignant disease

Addington‐Hall, Julia; Fakhoury, Walid K. H.; McCarthy, Mark

doi:10.1191/026921698676924076

Cited by 152 publications

(124 citation statements)

References 18 publications

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“…109 Older people are proportionally more likely to die from conditions other than cancer and hence are disadvantaged by diagnosis in terms of access to specialist palliative care. 3 The findings also suggest that there are particular barriers to making the transition to a palliative care approach for people with dementia.…”

Section: Discussionmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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BackgroundImproving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guidance has been published regarding the management of palliative care transitions within this setting.Aims(1) to explore how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspective of clinicians and service users; (2) to examine the extent of potentially avoidable hospital admissions amongst hospital inpatients with palliative care needs.DesignA mixed-methods design was adopted in two hospitals in England, serving diverse patient populations. Methods included (1) two systematic reviews; (2) focus groups and interviews with 58 health-care professionals to explore barriers to, and facilitators of, palliative care transitions in hospital; (3) a hospital inpatient survey examining palliative care needs and aspects of management including a self-/proxy-completed questionnaire, a survey of medical and nursing staff and a case note review; (4) in-depth interviews with 15 patients with palliative care needs; (5) a retrospective case note review of all inpatients present in the hospital at the time of the survey who had died within the subsequent 12 months; and (6) focus groups with 83 key decision-makers to explore the implications of the findings for service delivery and policy.ResultsOf the 514 patients in the inpatient survey sample, just over one-third (n = 185, 36.0%) met one or more of the Gold Standards Framework (GSF) prognostic indicator criteria for palliative care needs. The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Agreement between medical and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor. In focus groups, health professionals reported difficulties in recognising that a patient had entered the last 12 months of life. In-depth interviews with patients found that many of those interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. The retrospective case note review found that 35 (7.2%) admissions were potentially avoidable. The potential annual cost saving across both hospitals of preventing these admissions was approximately £5.3M. However, a 2- or 3-day reduction in length of stay for these admissions would result in an annual cost saving of £21.6M or £32.4M respectively.ConclusionsPatients with palliative care needs represent a significant proportion of the hospital inpatient population. There is a significant gap between NHS policy regarding palliative and end-of-life care management in acute hospitals in England and current practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Discussionmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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“…4,5 This philosophy of generalization of palliative care independent from the underlying disease is emphasized again by the current World Health Organization (WHO) definition. 6 Accordingly, expertise within palliative care is focussing on needs rather than disease, and it has been suggested that there is a common pathway at the end of life independent from the underlying illness.…”

Section: Introductionmentioning

confidence: 99%

Non-cancer patients in specialized palliative care in Germany: What are the problems?

et al. 2010

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To determine the role of non-cancer palliative care in inpatient services in Germany, data from the Hospice and Palliative Care Evaluation (HOPE) were analysed. Since 1999, a three-month census has been conducted annually in German palliative care units. Pooled data from 2002-2005 were tested for differences between non-cancer patients (NCs) and cancer patients (Cs). A total of 4182 patients (NC: 3.5%; C: 96.5%) were documented; functional status (using Eastern Cooperative Oncology Group (ECOG) measures) in NCs was lower compared to Cs (p ¼ 0.009). NCs suffered more often from dyspnoea (40%; C: 29%; p ¼ 0.004), weakness (92,3%; C: 84,5%; p ¼ 0.011) and tiredness (75.4%; C: 66.7%; p ¼ 0.03) and less from nausea (17.1%; C: 28.9%; p ¼ 0.002), vomiting (8.2%; C: 19.4%; p ¼ 0.001) or loss of appetite (55.5%; C: 67.9%; p ¼ 0.002). There were no differences in pain and constipation. Other problems (nursing, psychological) were more frequent for NCs, in particular the need for support in the activities of daily life (90.3%; C: 72.8%; p < 0.001) and disorientation/confusion (32.1%; C: 17.2%; p < 0.001). There were no differences in social problems. NCs are still rare in specialized inpatient palliative care institutions in Germany. The palliative care needs in patients with nonmalignant disease will challenge the health care system as the workload for these services will grow over proportionally.

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“…In recent years, palliative care services have increasingly recognised the needs of non-cancer patients, 2,3 especially in rapidly fatal neurological conditions such as motor neurone disease (MND). 4,5 However, there are some major differences between the palliative care needs of people with LTNC and those of people with cancer.…”

Section: Introductionmentioning

confidence: 99%

From diagnosis to death: exploring the interface between neurology, rehabilitation and palliative care in managing people with long-term neurological conditions

et al. 2007

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-This article reports a parallel survey of consultants working in the fields of neurology, rehabilitation and palliative medicine, and explores the interface between the three specialties in providing services for people with longterm neurological conditions. There was general agreement with respect to the core contributions offered by each specialty. However, there were also important areas of overlap which highlight the need for collaborative working practice, and for clinicians to respect the expertise of others in related areas. The survey highlighted a general shortfall in service provision for both palliative care and rehabilitation services for people with long-term neurological conditions, particular in the community. There was also a marked lack of coordination between services. Perhaps not surprisingly, each specialty reported greater ease of access to services within their own field, which further emphasises the need to work closely together.KEY WORDS: neurology, palliative care, postal survey, rehabilitation, service coordination IntroductionThe UK National Service Framework for Long Term Conditions 1 advocates life-long care for people with long-term neurological conditions (LTNC). It highlights the need for provision of specialist neurology, rehabilitation and palliative care services to support people throughout their illness and to the end of their lives.In recent years, palliative care services have increasingly recognised the needs of non-cancer patients, 2,3 especially in rapidly fatal neurological conditions such as motor neurone disease (MND). 4,5 However, there are some major differences between the palliative care needs of people with LTNC and those of people with cancer. 3,6,7 In general, neurological conditions have a longer and more variable time courseit is often hard to determine exactly when a patient is entering the terminal stages of life. Symptoms are diverse, and many patients have complex disabilities which include cognitive, behavioural and communication problems as well as physical deficits. For these reasons, guidelines increasingly recommend early referral to palliative care services. 8,9 On the other hand, long-term disability management and symptom control in LTNC have always been a core element of many rehabilitation servicesespecially those based in the community and able to support people in their own homes. In addition, many neurology departments now have specialist nurses with specific experience in the management of specific neurological conditions, who also provide long-term support for patients and their families. 10,11 In the context of current financial pressures on the NHS, an understanding of the interface between neurology, rehabilitation and palliative care is critical to ensuring that services work together to provide coordinated care for people with LTNC, rather than duplicating care provision and then competing for the scarce resources. 1 The principal aim of this study was to explore the interaction between specialist palliative care and neurolog...

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Specialist palliative care in nonmalignant disease

Cited by 152 publications

References 18 publications

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Non-cancer patients in specialized palliative care in Germany: What are the problems?

From diagnosis to death: exploring the interface between neurology, rehabilitation and palliative care in managing people with long-term neurological conditions

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