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Confirmation of the "disability paradox" among hospice patients: Preservation of quality of life despite physical ailments and
psychosocial concerns
Kutner JS, Nowels DE, Kassner CT, Houser J, Bryant LL, Main DS.
Palliative and Supportive Care 2003; 1: 231-7

The purposes of this cross-sectional study was to describe quality of life (QOL) and psychosocial and spiritual issues experienced by hospice patients and to evaluate the correlation between QOL, psychosocial and spiritual issues, and patients' diagnosis, functional status, and duration of stay and location of hospice care.

The study was set in the Population-based Palliative Care Research Network (PoPCRN), based at the University of Colorado Health Sciences Center (Division of General Internal Medicine). Sixty-six patients without cognitive impairment, from 14 hospices participated in this study.

A template for instrument domains was obtained from the literature and the investigators' experience. The template was then refined to produce the final study instrument through several steps that identified 10 key psychological, social and spiritual domains: abstractions, spiritual/religious, social role, self and intimate others, negative and positive emotions, tasks of dying, external issues, loss and terminal process. The McGill Quality of Life Questionnaire (MQOL) (0= bad to 10 = good) was used in its original form, all other items were selected from previously validated instruments or written by the investigators. The Karnofsky Performance Scale and the following questions were added to the final instrument: 1. wondering "why me?", 2. loss of appearance, privacy, health, confidence, dreams, hope, loved ones, usual role both within and outside the family, 3. communication.

Of the 66 patients studied, 56% were women, 53% had cancer, 53% pulmonary and/or cardiac disease, the median age was 76 years, 46% were cared for in hospices and 39% at home. The median duration of hospice care at time of interview was 49 days.. Seventy-three percent of patients were very satisfied with the hospice care they were receiving.

The physical components of QOL (physical symptoms and physical well-being) were rated lower than the psychosocial and spiritual aspects (support, existential well-being, psychological symptoms) in the McGill Quality of Life (MQOL) questionnaire. The mean MQOL Total Score was 7.1 and the mean Support subscale score was 8.6. Karnorfsy score < 50 was associated with worse existential well-being; a diagnosis of cancer was associated with greater existential well-being. Eighty-two per cent of the patients agreed that spiritual health contributed to physical health and received support from their faith. Seventy-two per cent of patients believed in a new life after their death. A third of the patients expressed concern regarding the length of time to death, an anguish at the idea of a painful death and felt no hope whatsoever.. However, most patients expressed a strong sense of hope and half of them had a specific short or long term aim.

Although 76% of the patients were worried about failing health, not many were concerned about the loss of their role within and outside the family. Despite the fact that these are patients in poor physical condition due to the advanced stage of their illness, and well cared for within a hospice programme, their quality of life was maintained.

Why I chose this article

This is one of the very few studies which reveals that despite the progress of the disease, the deterioration of physical conditions and the dying process, patients cared for in a hospice programme can maintain a good quality of life. Someone describes this as the "disability. Paradox". The question many should ask themselves is "palliative care really does work?"

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