Symptoms, Signs, Problems, and Diseases of Terminally Ill Nursing Home Patients: A Nationwide Observational Study in the Netherlands | Geriatrics | JAMA Internal Medicine | JAMA Network
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Original Investigation
February 14, 2005

Symptoms, Signs, Problems, and Diseases of Terminally Ill Nursing Home Patients: A Nationwide Observational Study in the Netherlands

Author Affiliations

Author Affiliations: Department of Nursing Home Medicine and Institute for Research in Extramural Medicine (Ms Brandt and Drs Ooms, van der Steen, and Ribbe), and Department of Social Medicine and Institute for Research in Extramural Medicine (Ms Brandt and Drs Deliens, van der Steen, and van der Wal), VU University Medical Center, Amsterdam, the Netherlands; and Department of Medical Sociology and Health Sciences, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium (Dr Deliens).

Arch Intern Med. 2005;165(3):314-320. doi:10.1001/archinte.165.3.314

Background  Nursing homes (NHs) are less well studied than hospices or hospitals as a setting for terminal care. For more targeted palliative care, more information is needed about the patient characteristics, symptoms, direct causes and underlying diseases, and incidence of terminally ill NH patients. These aspects are examined in this study.

Methods  Prospective observational cohort study in 16 NHs representative of the Netherlands. All long-term care patients assessed by an NH physician to have a life expectancy of 6 weeks or less were enrolled in our study.

Results  The terminal disease phase was marked with symptoms of low fluid and food intake, general weakness, and respiratory problems or dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia) and general disorders (eg, cachexia). The 2 main underlying diseases of the terminal phase were mental and behavioral disorders and diseases of the circulatory system. Cancer was the underlying disease in only 12% of the patients. Patients with cancer showed a different pattern of symptoms than those without cancer. Per 100 beds per year, 34 NH patients entered the terminal phase. Most patients (82.9%) died within 7 days of inclusion.

Conclusions  For patients without cancer in Dutch NHs, the terminal disease phase is difficult to predict, and once diagnosed, patient survival time is short. A better identification of the symptom burden might improve the prognostication of life expectancy in elderly patients.