Talking about end-of-life care

The purpose of the paper is to describe how residents express preferences for end-of-life (EOL) care | Geriatric Nursing

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For this qualitative study, we conducted semi-structured interviews and completed conventional content analysis to describe how residents’ expressed their preferences for care at the end of life. Sixteen residents from four nursing homes (NH) in southeastern Pennsylvania participated in this study. Residents were on average 88 years old, primarily non White, and widowed. Three key domains emerged from the analyses: Preferences for Today, Anticipating the End of My Life, and Preferences for Final Days. Residents linked their everyday living and EOL preferences by using ‘if and then’ logic to convey anticipation and readiness related to EOL. These findings suggest new strategies to start discussions of EOL care preferences with NH residents.

Full reference: Towsley, G.L. et al. (2017) Talking about end-of-life care: Perspectives of nursing home residents. Geriatric Nursing. Published online: 01 August 2017

The care of older people in care homes

National Institute for Health Research (NIHR) Themed Review: Advancing Care: Research with care homes

There are more than twice as many people living in care homes in England and Wales, than there are people staying in hospital. Yet we know far more about effective treatments in hospital and less about what works most effectively to improve care for older people in care homes. Research in care homes is a relatively new and emerging field.

Advancing Care provides an overview of recent NIHR research on improving the health and care of care home residents. It highlights current research taking place now and explores new approaches being developed in this important area.

The review brings together NIHR research on three themes relating to the care of older people in care homes: Living well – maintaining good health and quality of life, ageing well – managing long term conditions associated with ageing, and dying well – ensuring a good quality end of life. It features:

  • 23 published studies
  • 21 ongoing studies
  • Quotes from care home owners, managers, staff and researchers
  • Where next for care home research?

End of life care in a care home

About a fifth of all people who die in any one year in England die in a care home. This means that training for all staff in end of life care planning, and for some in palliative care is a priority.

Most care home residents are over 85 years old, with an average life expectancy of less than two and a half years. This means that caring for people approaching the end of their lives must be a large part of what care homes, with or without specialist nursing care, must provide.

The Social Care Institute for Excellence has produced, End of life care in a care home which includes a Checklist for owners and managers.

In addition, My Home Life has developed a step-by-step guide to good practice in end-of-life-care

Avoiding costly hospitalisation at end of life: findings from a specialist palliative care pilot in residential care for older adults

Chapman, M. et al. BMJ Supportive & Palliative Care. Published Online: 5 August 2016

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Image source: Rowena Dugdale – Wellcome Images // CC BY-NC-ND 4.0

Objectives: Specialist palliative care is not a standardised component of service delivery in nursing home care in Australia. Specialist palliative care services can increase rates of advance care planning, decrease hospital admissions and improve symptom management in such facilities. New approaches are required to support nursing home residents in avoiding unnecessary hospitalisation and improving rates of dying in documented preferred place of death. This study examined whether the addition of a proactive model of specialist palliative care reduced resident transfer to the acute care setting, and achieved a reduction in hospital deaths.

Methods: A quasi-experimental design was adopted, with participants at 4 residential care facilities. The intervention involved a palliative care nurse practitioner leading ‘Palliative Care Needs Rounds’ to support clinical decision-making, education and training. Participants were matched with historical decedents using propensity scores based on age, sex, primary diagnosis, comorbidities and the Aged Care Funding Instrument rating. Outcome measures included participants’ hospitalisation in the past 3 months of life and the location of death.

Results: The data demonstrate that the intervention is associated with a substantial reduction in the length of hospital stays and a lower incidence of death in the acute care setting. While rates of hospitalisation were unchanged on average, length of admission was reduced by an average of 3.22 days (p<0.01 and 95% CI −5.05 to −1.41), a 67% decrease in admitted days.

Conclusions: The findings have significant implications for promoting quality outcomes through models of palliative care service delivery in residential facilities.

Read the full article here

Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives?

Thomas, T. et al. Palliative Medicine. Published online: July 2016

Background: Transfers from hospital or ‘hospice palliative care units’ to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals.

Aim: To understand the experiences of patients discharged to care homes for end-of-life care.

Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care.

Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough’s weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one’s quality of life and that the process of finding a care home had been traumatic. No studies investigated patients’ views prospectively, the views of staff or the processes of decision-making.

Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.

Read the abstract here

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

Saini, G. et al. BMC Palliative Care. Published online: 7 July 2016

Background: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.

Methods: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.

Results: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.

Conclusions: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

Read the full article here

Education and training to enhance end-of-life care for nursing home staff

Anstey, S. et al. BMJ Supportive & Palliative Care. Published online 21 June

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Background: The delivery of end-of-life care in nursing homes is challenging. This situation is of concern as 20% of the population die in this setting. Commonly reported reasons include limited access to medical care, inadequate clinical leadership and poor communication between nursing home and medical staff. Education for nursing home staff is suggested as the most important way of overcoming these obstacles.

Objectives: To identify educational interventions to enhance end-of-life care for nursing home staff and to identify types of study designs and outcomes to indicate success and benchmark interventions against recent international guidelines for education for palliative and end-of-life care.

Design: Thirteen databases and reference lists of key journals were searched from the inception of each up to September 2014. Included studies were appraised for quality and data were synthesised thematically.

Results: Twenty-one studies were reviewed. Methodological quality was poor. Education was not of a standard that could be expected to alter clinical behaviour and was evaluated mainly from the perspectives of staff: self-reported increase in knowledge, skills and confidence delivering care rather than direct evidence of impact on clinical practice and patient outcomes. Follow-up was often short term, and despite sound economic arguments for delivering effective end-of-life care to reduce burden on the health service, no economic analyses were reported.

Conclusions: There is a clear and urgent need to design educational interventions that have the potential to improve end-of-life care in nursing homes. Robust evaluation of these interventions should include impact on residents, families and staff and include economic analysis.

Read the full article here