Introduction  “Quality of life” (QOL) 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 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 it is most appropriately determined by the patient.  Although family members and health professionals can make significant observations about QOL, studies consistently document important variances between patient and surrogate-defined QOL. A QOL 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 (questionnaires) specifically designed for palliative care patients are available to measure what QOL means for patients nearing the end of life.  One systematic review showed that the McGill Quality of Life Questionnaire (MQOL) had the best validity ratings followed by the Quality of Life at the End of Life (QUAL-E) and the Quality of Death and Dying Questionnaire (QODD).  These instruments have been used to identify discussion topics with patients.  When used to monitor QOL, studies show only slight or no measurable improvement. Interestingly, an electronic patient symptom reporting tool, which allows health care teams to respond quickly to changes in patient symptoms, has been associated in QOL improvement and increased survival.  

Suggested language   While many QOL instruments are available, a few basic open-ended questions can be helpful in talking to patients:  

• “How has your disease interfered with your daily activities?” (Functional domain) 
• “How 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) 
• “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 whole 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. 

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, Wever 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. 
6. Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, Schrag D. Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017 Jul 11;318(2):197-198. 
7. Davis MP, Hui D. Quality of Life in Palliative Care. Expert Rev Qual Life Cancer Care. 2017;2(6):293-302 
8. Albers G, Echteld MA, de Vet HC, Onwuteaka-Philipsen BD, van der Linden MH, Deliens L. Evaluation of quality-of-life measures for use in palliative care: a systematic review. Palliat Med. 2010 Jan;24(1):17-37. 

Version History:  This Fast Fact was originally edited by David E Weissman MD.   2nd Edition published September 2006; 3rd Edition May 2015; 4th edition in February 2024 by James Deming MD
Conflicts of interest: None to report.