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Transitions at the end of life for older adults - patient, carer and professional perspectives

Transitions at the end of life for older adults - patient, carer and professional perspectives
Transitions at the end of life for older adults - patient, carer and professional perspectives
Background

The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective

The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting

England.

Participants

Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods

This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results

Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions

Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

Funding

The National Institute for Health Research Health Services and Delivery Research programme.
2050-4349
17
NIHR Journals Library
Hanratty, Barbara
b2aa3cd0-a1e2-485c-a60c-e735ffb5035d
Lowson, Elizabeth
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Grande, Gunn
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Payne, Sheila
d7c97f41-ec69-4157-9339-ca07c521fbcc
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8
Valtorta, Nicole
379a1002-2d46-4391-a8dc-6f10472be5e6
Seymour, Jane
b001b1f3-1ac4-495d-837f-10ca5154b5af
Hanratty, Barbara
b2aa3cd0-a1e2-485c-a60c-e735ffb5035d
Lowson, Elizabeth
5f1664ff-e3ad-46d1-b318-c89786a76404
Grande, Gunn
7335911a-ee7f-44cd-924e-c8b3c903fe6c
Payne, Sheila
d7c97f41-ec69-4157-9339-ca07c521fbcc
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8
Valtorta, Nicole
379a1002-2d46-4391-a8dc-6f10472be5e6
Seymour, Jane
b001b1f3-1ac4-495d-837f-10ca5154b5af

Hanratty, Barbara, Lowson, Elizabeth, Grande, Gunn, Payne, Sheila, Addington-Hall, Julia, Valtorta, Nicole and Seymour, Jane (2014) Transitions at the end of life for older adults - patient, carer and professional perspectives (Health Services and Delivery Research, , (doi:10.3310/hsdr02170), 17, 2) Southampton, GB. NIHR Journals Library 130pp.

Record type: Monograph (Project Report)

Abstract

Background

The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective

The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting

England.

Participants

Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods

This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results

Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions

Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

Funding

The National Institute for Health Research Health Services and Delivery Research programme.

Text
FullReport-hsdr02170.pdf - Version of Record
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More information

e-pub ahead of print date: June 2014
Published date: 14 June 2014
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 365884
URI: http://eprints.soton.ac.uk/id/eprint/365884
ISSN: 2050-4349
PURE UUID: 2a7292c4-cbfd-4a68-872d-eedad82a23f2

Catalogue record

Date deposited: 18 Jun 2014 15:50
Last modified: 10 Jul 2020 16:33

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Contributors

Author: Barbara Hanratty
Author: Elizabeth Lowson
Author: Gunn Grande
Author: Sheila Payne
Author: Nicole Valtorta
Author: Jane Seymour

University divisions

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