FAST FACT AND CONCEPT #52: Quality of Life

2nd Edition

Authors: Victor T. Chang and David E. Weissman

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?

There are two key concepts about Quality of Life: 1) it is multi-dimensional; and 2) it is 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. Multi-dimensionality can be assessed by asking questions in the following key domains: 1. Physical; 2. Functional; 3. Emotional; 4. Social; 5. 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, and what goals of care may be meaningful. Medical interventions usually affect Physical Well Being and Functional Well Being.

Instruments specifically designed for palliative care patients, such as the Missoula VITAS-QOL and the QUAL-E, have helped to provide new insights into what QOL means for patients nearing the end-of-life. 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

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

Do you find yourself wondering what is the meaning of all this? Existential

Patients almost always appreciate having the chance to discuss these issues with their doctor; for one thing, asking these questions tells the patient 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, another way of reframing the meaning of QOL, will be better prepared to care for patients near the end of life.

References

1. 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.
2. 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.
3. Detmar SB, Muller MJ, We v er LD, et al. The patient-physician relationship. Patient-physician communication during outpatient palliative treatment visits: an observational study. JAMA 2002; 285:1351-7.
4. 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.
5. 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.

Fast Facts were edited by David Weissman MD, Palliative Care Center, Medical College of Wisconsin until January 2007.  For comments/questions write to the current editor, Drew Rosielle MD: drosiell@mcw.edu. The complete set of Fast Facts is available at EPERC: www.eperc.mcw.edu

Copyright/Referencing Information: Users are free to d ownload and distribute Fast Facts for educational purposes only. Citation for referencing: Chang V and Weissman, D. Fast Facts and Concepts #51 Quality of Life, September 2006. End-of-Life/Palliative Education Resource Center www.eperc.mcw.edu.

Disclaimer: Fast Facts provide educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

Creation Date: 10/2000; 2nd Edition 7/2006

Purpose: Self-Study Guide, Teaching

Audience(s)

ACGME Competencies: Medical Knowledge, Patient Care

Keyword(s): psychosocial and spiritual experience