The study protocol of: 'initiating end of life care in stroke: clinical decision- making around prognosis'

 Background: The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.
Methods/design: This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.
Discussion: This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

‘Moral luck’ and the question of autonomy, choice, and control in end-of-life decision making

It is commonly assumed that, in the realm of ethical decision making at the end-of-life, ‘luck’ and ‘risk’ do not intrude. Nonetheless ‘moral luck’ (where happenstance makes a moral difference) does intrude and can have an unanticipated impact on the ultimate moral outcomes of end-of-life care. In the interests of upholding the ethical standards of end-of-life care, healthcare providers have increasingly relied on ethical principlism as a rational decision-guiding frame in the sincere belief that such an approach will enable patient selfdetermination and control over treatment decisions when needing end-of-life care. Due to contextual variables and associated uncertainties in end-of-life care, however, the intended moral outcomes of appeals to commonly accepted ethical principles (in particular the principle of autonomy) are not always realized. What is not always appreciated is that whether ‘good’ or ‘bad’ moral outcomes are achieved can be as much a matter of chance as of choice. This essay explores the relevance and possible implications of moral luck in end-of-life decision making and care. A key conclusion of the paper is that the notion of moral luck needs to be taken seriously in end-of-life care contexts since it can have an unanticipated impact on the outcomes of the decisions that are made and thereby on the moral interests of patients facing the end of their lives.

Critically impaired infants and end of life decision making : resource allocation and difficult decisions

Decisions to withdraw or withhold life-sustaining treatment are contentious, and offer difficult moral dilemmas to both medical practitioners and the judiciary. This issue is exacerbated when the patient is unable to exercise autonomy and is entirely dependent on the will of others.This book focuses on the legal and ethical complexities surrounding end of life decisions for critically impaired and extremely premature infants. Neera Bhatia explores decisions to withdraw or withhold life-sustaining treatment from critically impaired infants and addresses the controversial question, which lives are too expensive to treat? Bringing to bear such key issues as clinical guidance, public awareness, and resource allocation, the book provides a rational approach to end of life decision making, where decisions to withdraw or withhold treatment may trump other competing interests.The book will be of great interest and use to scholars and students of bioethics, medical law, and medical practitioners.

The experiences and needs of family carers of people with diabetes at the end of life

ABSTRACT
Diabetes is a common, increasingly prevalent chronic disease. Many people requiring palliative care have diabetes. Diabetes requires lifelong self-care tasks. Family carers frequently perform these tasks when the person with diabetes is no longer able to perform them, but there is a lack of information about carers’ needs to enable them to undertake their new care tasks. The study aimed to collect information from family carers of people with diabetes requiring palliative care about their views and experiences of managing a family member’s diabetes at the end of life and identify their needs to enable them to undertake diabetes care tasks. Data were collected during individual, semistructured interviews with 10 family members caring for a person with diabetes receiving palliative care. The 4 key themes identified were as follows: I didn’t know what to do: it’s a big responsibility; I need education; and it’s important to manage diabetes. Family members/carers feel anxious about their increasing responsibility when caring for their family member’s diabetes and need information and education to help them monitor and interpret blood glucose levels, mange high or low blood glucose levels, and administer glucose-lowering medicines safely and confidently.

Palliative and end-of-life care for patients with diabetes

Diabetes complications are common and can contribute to unpleasant symptoms, depression and reduced quality of life. A palliative approach to diabetes care in patients with complications, including modified metabolic targets, can reduce symptoms and hospital admissions and improve quality of life and care transitions. GPs have a key role in co-ordinating palliative and end-of-life care in these patients.

Costs and advance directives at the end of life: a case of the ‘Coaching Older Adults and Carers to have their preferences Heard (COACH)’ trial

BACKGROUND: Total costs associated with care for older people nearing the end of life and the cost variations related with end of life care decisions are not well documented in the literature. Healthcare utilisation and associated health care costs for a group of older Australians who entered Transition Care following an acute hospital admission were calculated. Costs were differentiated according to a number of health care decisions and outcomes including advance directives (ADs).

METHODS: Study participants were drawn from the Coaching Older Adults and Carers to have their preferences Heard (COACH) trial funded by the Australian National Health and Medical Research Council. Data collected included total health care costs, the type of (and when) ADs were completed and the place of death. Two-step endogenous treatment-regression models were employed to test the relationship between costs and a number of variables including completion of ADs.

RESULTS: The trial recruited 230 older adults with mean age 84 years. At the end of the trial, 53 had died and 80 had completed ADs. Total healthcare costs were higher for younger participants and those who had died. No statistically significant association was found between costs and completion of ADs.

CONCLUSION: For our frail study population, the completion of ADs did not have an effect on health care utilisation and costs. Further research is needed to substantiate these findings in larger and more diverse clinical cohorts of older people.

End-of-life care in an Australian rehabilitation facility for older people: staff focus groups

A qualitative study of staff experiences of end-of-life care for older people in a subacute rehabilitation facility was undertaken using three focus groups with senior multidisciplinary staff (5), junior nurses (8), and junior allied health staff (7). Content analysis revealed four major themes: being a key contact person; the quality of end–of-life care; referring to off-site service providers; and differing perspectives. These data have implications for multidisciplinary practice including staff education and capacity to change focus of care in facilities for older people dedicated to rehabilitation rather than palliation or end-of-life care.

Vulnerability at the end of life: Australian veterans requiring home-based palliative care

In Australia, veterans are a vulnerable group, because of ageing, and high rates of chronic or life-threatening illnesses and poor mental health .This retrospective pilot study explored the home-based palliative care needs of veterans as they face the end of their life, compared to non-veterans. Medical records of ten deceased veterans and ten non-veterans in a home-based palliative care service were analyzed both for demographic data, and qualitative content. Veterans had significantly more comorbidities and were older at death. Qualitative data indicated common concerns, including the role of families and practical aspects of care. Some differences were found between veterans and non-veterans in their end-of-life care requirements. More awareness of veterans’ status may assist in care more tailored to their specific needs.

End-of-life care in a rehabilitation centre for older people in Australia

Aim
To investigate processes at the end of life for patients who died in a subacute evaluation and management facility for older people.

Methods
A retrospective chart audit for patients (n = 55) who died in the previous 2 years was undertaken, recording a number of significant variables.


Results
Despite diagnosis of comorbid medical conditions, most participants were admitted for improved functioning or assessment for alternative accommodation. Consistent with this focus, the key contact person was most often an allied health team member. Not For Resuscitation order and/or power of attorney documents on admission were uncommon (<30%) as were referrals to palliative care specialist staff (13%), although an end-of-life discussion was recorded (90%) and often included as a new goal of care (71%).

Conclusion
Factors likely to improve end-of-life care include advance care planning, earlier recognition of short prognosis and staff education.