title: Patterns of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure.
abstract: Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.
authors.affiliation: St. Columba's Hospice, and Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh, 20 West Richmond Street, Edinburgh, UK. Scott.Murray@ed.ac.uk
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
authors.forename: Marilyn
authors.initials: M
authors.lastname: Kendall
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Grant
authors.forename: Kirsty
authors.initials: K
authors.lastname: Boyd
authors.forename: Stephen
authors.initials: S
authors.lastname: Barclay
authors.forename: Aziz
authors.initials: A
authors.lastname: Sheikh
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D002303:Cardiac Output, Low / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008175:Lung Neoplasms / Q000523:psychology* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000401:mortality*; D011584:Psychology; D029181:Spirituality; D019452:Terminally Ill / Q000523:psychology*; D006113:United Kingdom / Q000453:epidemiology