title: 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.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Marilyn
authors.initials: M
authors.lastname: Kendall
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Emma
authors.initials: E
authors.lastname: Carduff
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Anna
authors.initials: A
authors.lastname: Lloyd
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Barbara
authors.initials: B
authors.lastname: Kimbell
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Debbie
authors.initials: D
authors.lastname: Cavers
authors.affiliation: 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.
authors.forename: Susan
authors.initials: S
authors.lastname: Buckingham
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Kirsty
authors.initials: K
authors.lastname: Boyd
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Edinburgh, Scotland, United Kingdom.
authors.forename: Liz
authors.initials: L
authors.lastname: Grant
authors.affiliation: Division of General Internal Medicine and Primary Care, Brigham and Women's Hospital/Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Allison
authors.initials: A
authors.lastname: Worth
authors.affiliation: 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.
authors.forename: Hilary
authors.initials: H
authors.lastname: Pinnock
authors.affiliation: 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.
authors.forename: Aziz
authors.initials: A
authors.lastname: Sheikh
authors.affiliation: 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.
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D015179:Colorectal Neoplasms / Q000628:therapy; D005190:Family / Q000523:psychology*; D016330:Frail Elderly / Q000523:psychology / Q000706:statistics & numerical data; D005910:Glioma / Q000628:therapy; D006040:Goals; D006282:Health Personnel / Q000523:psychology; D006333:Heart Failure / Q000628:therapy; D006801:Humans; D007407:Interviews as Topic; D017093:Liver Failure / Q000628:therapy; D008137:Longitudinal Studies; D008175:Lung Neoplasms / Q000628:therapy; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods / Q000523:psychology*; D029424:Pulmonary Disease, Chronic Obstructive / Q000628:therapy; D012606:Scotland; D013727:Terminal Care / Q000379:methods / Q000523:psychology*; D055815:Young Adult
keywords: Cancer; end-of-life care; frailty; illness trajectories; organ failure; palliative care; qualitative longitudinal research; serial interviews