Introduction ’Quality of life’ is a term commonly used by health professionals when trying to help patients and families make decisions concerning care near the end of life. Formal studies using quality of life instruments are increasingly common in clinical trials, typically used as an outcome measurement before and after treatment. Implicit is the notion that if quantity of the time left cannot be increased, then quality of life should be maximized. But what does ’quality of life’ (QOL) mean, and how should clinicians use this information in decision making?
Aspects of QOL There are two key concepts about QOL: it is multi-dimensional and most appropriately determined by the patient. Although family members, physicians and other health professionals can make significant observations about QOL, studies consistently document important variances between patient and surrogate defined QOL.
A quality of life assessment can be considered a review of systems of the patient’s world. The multi-dimensional aspects of QOL can be assessed by asking questions in the following key domains: physical, functional, emotional, social, and spiritual/existential. The sum of these questions can be a “snapshot” of the patient’s world and give the clinician an idea of what is important to a patient, what limits them, and what goals of care may be meaningful. Medical interventions usually affect physical and functional well-being.
Measures of QOL Many instruments specifically designed for palliative care patients are available to measure what QOL means for patients nearing the end of life. Unfortunately, most of these instruments have not been adequately validated. A systematic review showed that the Missoula VITAS-QOL, the QUAL-E, and QODD had the best ratings. While QOL instruments (questionnaires) have been developed for many conditions, a few basic open ended questions can be helpful in talking to patients:
- How has your disease interfered with your daily activities? (Functional domain)
- Have are you getting along with family and friends as a result of your illness? (Social)
- Have you been feeling worried or sad about your illness? (Emotional)
- Have you been feeling sick or bedridden because of your illness? (Physical)
- How much or which symptoms bother you the most? (Physical)
- How have your religious beliefs been affected by your illness? (Spiritual/existential)
- Do you find yourself wondering what is the meaning of all this? (Spiritual/existential)
Final words Patients almost always appreciate having the chance to discuss these issues with their doctor. For one thing, asking these questions tells patients that the physician has an interest in their well being that goes beyond the actual disease. Physicians who have a better understanding of the totality of the disease-experience for the patient (which is another way of reframing the meaning of QOL), will be better prepared to care for patients near the end-of-life.
- Brunelli C, Constantini M, DiGiulio P, et al. Quality of life evaluation: when do terminal cancer patients and health-care providers agree? J Pain Sym Manage. 1998; 15:151-158.
- Byock IR, Merriman MP. Measuring quality of life for patients with terminal illness: the Missoula VITAS quality of life index. Palliative Med. 1998; 12:231-44.
- Detmar SB, Muller MJ, Wever LD, et al. The patient-physician relationship. Patient-physician communication during outpatient palliative treatment visits: an observational study. JAMA. 2002; 285:1351-7.
- Steele LL, Mills B, Hardin SR, Hussey LC. The quality of life of hospice patients: patient and provider perceptions. Am J Hosp Palliative Care. 2005; 22:95-110.
- Steinhauser KE, Clipp EC, Bosworth HB et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliative Supportive Care. 2004; 2:3-14.
- Albers G, Echteld MA, et al. Evaluation of quality of life measures for use in palliative care: a systematic review. Palliative Medicine 2010; 24:17-37.
Version History: This Fast Fact was originally edited by David E Weissman MD. 2nd Edition published September 2006; 3rd Edition May 2015. Current version re-copy-edited April 2009; then again May 2015.
Version History: This Fast Fact was originally edited by David E Weissman MD. 2nd Edition published August 2005; 3rd Edition May 2015. Current version re-copy-edited March 2009; then again May 2015.
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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