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J Pain Symptom Manage. 2015 Aug;50(2):216-24. doi: 10.1016/j.jpainsymman.2015.02.017. Epub 2015 Mar 28.

Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers.

Author information

1
Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
2
Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom; Allergy and Respiratory Research Group, Centre for Population Health Sciences, The Usher Institute of Population Health Sciences & Informatics, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
3
Division of General Internal Medicine and Primary Care, Brigham and Women's Hospital/Harvard Medical School, Boston, Massachusetts, USA.
4
Allergy and Respiratory Research Group, Centre for Population Health Sciences, The Usher Institute of Population Health Sciences & Informatics, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom; Wellcome Trust Clinical Research Facility Education Department, Western General Hospital, The University of Edinburgh, Edinburgh, Scotland, United Kingdom.
5
Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom. Electronic address: Scott.Murray@ed.ac.uk.

Abstract

CONTEXT:

Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care.

OBJECTIVES:

To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need.

METHODS:

We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland.

RESULTS:

The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying.

CONCLUSION:

These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.

KEYWORDS:

Cancer; end-of-life care; frailty; illness trajectories; organ failure; palliative care; qualitative longitudinal research; serial interviews

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