A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia in the acute hospital setting

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to endof-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions.This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care

Palliative Care and Dementia

This paper was commissioned by Alzheimer's Australia to promote discussion by people with dementia, their families and carers of the issues that may be faced as people with terminal dementia move towards death. A palliative care approach will also be appropriate when a person with dementia has another terminal condition

End of Life Care: The Importance of Culture and Ethnicity

Despite Australia's cultural diversity, there is little doubt that ethnic minority groups continue to have less access to health care systems, let alone culturally appropriate care, including palliative and end of life care. Such disparity of access for all individuals requiring such care ignores a basic human right to live and die in comfort. This article will discuss some barriers that may limit people of different cultural backgrounds receiving appropriate palliative and end of life care, and provides some generic approaches that may assist general practitioners when considering care needs of people from different cultural backgrounds. It also highlights care issues that GPs may need to consider when providing terminal care for someone from a different cultural background

EAPC task force on education for psychologists in palliative care

It is argued that psychological aspects of care and psychosocial problems are essential components of palliative care. However, the provision of appropriate services remains somewhat arbitrary. Unlike medical and nursing care, which are clearly delivered by doctors and nurses respectively, psychological and psychosocial support in palliative care are not assigned exclusively to psychologists. It is generally expected that all professionals working in palliative care should have some knowledge of the psychological dynamics in terminal illness, as well as skills in communication and psychological risk assessment. On the one hand, palliative care education programmes for nurses and doctors comprise a considerable amount of psychological and psychosocial content. On the other hand, only a few palliative care associations provide explicit information on the role and tasks of psychologists in palliative care. Psychologists’ associations do not deal much with this issue either. If they refer to it at all, it is in the context of the care of the aged, end-of-life care or how to deal with grief

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Abstract Background As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required

The provision of informal care in terminal illness: An analysis of carers? needs using a discrete choice experiment

There is an increasing expectation that families will provide care at home for those with chronic, acute and terminal illness. There is a range of services available to support the home care of these patients. Carers of those in the terminal phase of illness face different demands and challenges than those caring for the chronically ill, disabled or aging; the patient?s health is deteriorating, often rapidly, and death is imminent. Yet the needs and requirements of this group of carers has been far less studied than those caring for people with chronic and continuing conditions. We argue that considering the reciprocal nature of relationships is important in understanding the provision of informal care. Carers? feelings for which tasks and responsibilities are most difficult are not the same as their preferences for additional support services. Carers preferences are influenced by their relationship with the patient. This study investigates carers? preferences for services to support their caregiving role. Carer preferences were investigated using a discrete choice experiment, in which 168 carers were asked first to choose between two packages of care and then between the chosen package and their current support. Data were analysed using mixed logit. The DCE results showed that the support most wanted was palliative care nursing, general nursing, and telephone advice available 24 hours. Carers providing high levels of care wanted respite care provided at home and help with the patient?s personal care. Where the care-giving need was relatively low, carers wanted help with household tasks, transport and a case co-ordinator. Overall, carers appeared to be satisfied with the support they received from palliative care services, but this varied with the personal circumstances of the carer. This study provides useful insights for those who plan and deliver palliative care in the community. It supports the view that effective support for carers must recognise the differing needs of individual carers. While our results do not provide any insight into how the pre-existing relationship between carer and recipient may affect preferences for care, it points to the need to explore further differences in preferences across respondents both in discrete choice work in general, and in designing services to support rather than replace informal carers.Informal care; carer's perspective; discrete choce experiment

A qualitative study of the health experience of gypsy travellers in the UK with a focus on terminal illness

Aim To understand the experience of terminal care and health care access for Gypsy Travellers, to inform palliative and primary care service provision. Background Little contemporary research of UK English Romany Gypsy Travellers is available. This ethnic group is often overlooked in ethnic minority health research. Methods Access to Gypsy Traveller communities was through non-health care channels and required the development of trust through repeated contact over time. English Romany Gypsy Travellers at two Traveller sites participated in face-to-face contacts. Data collection was through field observation and seven semistructured interviews with Gypsy Traveller women who had experience of caring for relatives who were dying. In addition, data were collected over two years through discussion in a members-only Gypsy and Traveller interest e-mail forum. Findings The culture of Gypsy Travellers is distinct but diverse. Hygiene is important as is discretion and sensitivity to the information requirements of the patient and family. Gypsy Travellers are aware that their mobility (voluntary or enforced) can negatively impact on health care. Home care for the terminally ill is often preferred to hospital care often due to poor understanding of their cultural and personal needs by health care professionals and due to an aversion to ‘bricks and mortar’. Care may be provided by the extended family. Palliative care provision should consider the needs of Gypsy Travellers including respect for their culture and support for caring at home

The Value of Life Near its End and Terminal Care

Medical care at the end of life, which is often is estimated to contribute up to a quarter of US health care spending, often encounters skepticism from payers and policy makers who question its high cost and often minimal health benefits. It seems generally agreed upon that medical resources are being wasted on excessive care for end-of-life treatments that often only prolong minimally an already frail life. However, though many observers have claimed that such spending is often irrational and wasteful, little explicit and systematic analysis exists on the incentives that determine end of life health care spending. There exists no positive theory that attempts to explain the high degree of end-of life spending and why differences across individuals, populations, or time occur in such spending. This paper attempts to provide the first rational and systematic analysis of the incentives behind end of life care. The main argument we make is that existing estimates of the value of a life year do not apply to the valuation of life at the end of life. We stress the low opportunity cost of medical spending near ones death, the importance of keeping hope alive in a terminal care setting, the larger social value of a life than estimated in private demand settings, as well as the insignificance in quality of life in lowering its value. We derive how an ex-ante perspective in terms of insurance and R&D alters some of these conclusions.