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Invited Commentary
Aug 13/27, 2012

Improving Patients' Quality of Life at the End of LifeComment on “Factors Important to Patients' Quality of Life at the End of Life”

Author Affiliations

Author Affiliations: Intramural Research Program, National Institute on Aging, Biomedical Research Center, National Institutes of Health, Baltimore, Maryland.

Arch Intern Med. 2012;172(15):1142-1144. doi:10.1001/archinternmed.2012.3169

In this issue Zhang et al1 seek the best predictors of quality of life (QOL) for cancer patients in the last week of their lives. This investigation is one aspect of the Coping With Cancer study, a multisite, prospective, longitudinal study of patients with advanced cancer who were followed up for several months until death.

Patients and their caregivers provided various demographic, medical, and psychosocial data at enrollment in the study, and a caregiver rated QOL just before death retrospectively several weeks postmortem. This assessment consisted of ratings by the informant for the patient's last week of life in 3 areas—physical distress, psychological distress, and overall QOL—which were summed to create the primary outcome measure of QOL.

After applying sophisticated random-effects modeling and cross-validation techniques, Zhang et al1 identified several key predictors of informant-rated QOL just before death. Among these predictors, dying in the hospital and intensive care unit admissions in the last week of life accounted for the greatest variance in poor QOL; patients' worries were also associated with worse QOL. Factors that contributed to greater QOL included patients' self-reported participation in prayer and in-hospital pastoral care, as well as self-reported therapeutic alliances with their physicians. Zhang et al1 conclude that these data suggest a significant role for physicians even when cures are unavailable by cultivating therapeutic alliances, promoting introspection perhaps through pastoral services, reducing worrying, and avoiding unnecessary hospitalizations.

Health-related QOL is a complex and multifaceted construct that can refer to physical, social, or psychological factors but defies exact definition.2 As an overall measure of well-being, functional health, and life satisfaction, QOL has been used in several ways from measuring personal appraisals of one's overall circumstances to progress in eliminating health disparities and success in addressing public health goals in epidemiologic studies. The use of QOL has various applications, including guides to care for patients with other terminal diseases, such as dementia.3

In their comments on Gill and Feinstein’s2 seminal work on QOL, Guyatt and Cook4 set forth criteria for judging whether it was assessed adequately. Among their criteria, drawn from Gill and Feinstein,2 they suggest the key question is whether “patients were asked to place a value on their lives.”4p631 None of these authors suggest how we might assess the paradox of life quality when time to expected death is measured in hours or days. Nevertheless, the concept persists, even though it seems contrary to QOL. It speaks to the absence of unnecessary pain and discomfort near the end of life (EOL) and an acceptance of the inevitably short time left to live. Although Zhang's 3 items are surely related to the self-assessed value of life, there is ample room for more work in this area to characterize what QOL means for patients with terminal illnesses.

The concept of quality of the EOL in cancer patients has been underexamined in cancer medicine in the quest to develop newer, more advanced, and effective modalities of interventional cytotoxic therapies. This study highlights the scarcity of research in an area that can give us important tools in further refining coherent treatment strategies for patients throughout the timeline of cancer treatment and disease trajectory. This study examines issues fundamental to providing high-quality, state-of-the art cancer care. It is surprising at this stage in the development and implementation of complex multimodal cancer treatment strategies that the factors most critical in influencing the quality of the EOL are not clearly defined and considered along the entire timeline beginning with cancer diagnosis.

Zhang et al1 have provided important insights by identifying the 9 factors that account for approximately 20% of the variance in quality of the EOL. It is likely that several patient-centered and provider-centered factors account for the unexplained variance. Although they measured several characteristics while patients were alive, none of the measures were assessed before the patients became ill or before they began treatment. This is important because dispositions and personality characteristics are related to self-rated QOL, particularly optimism,5 which is 1 facet of extraversion in the 5-factor model of personality.6 There is an accumulating literature suggesting that personality attributes are at least as important for predicting QOL as clinical factors, for example, in major colorectal surgery.7 Other attributes worth considering include science and health literacy levels among patients and their caregivers; race, ethnicity, language, and cultural competence among physicians and other care providers; and consistency of longitudinal care planning as well as quality of physician-patient bidirectional communication and their overall relationships.

The American Society of Clinical Oncology statement8 on individualized care for advanced cancer patients argues that the paradigm of care must change and that this change must include the very areas that Zhang et al1 highlight as factors that are associated with quality of the EOL. Cancer physicians and other care providers not only must answer the question of whether we can treat advanced cancer but also must simultaneously address the ways that QOL can be maximized throughout interventional treatments and the time course of the disease in individual patients. Physicians are urged to recognize the need for individualized care that will facilitate setting of appropriate treatment goals and end points that focus on QOL, not solely survival at any cost.

The challenge of providing care for patients with advanced cancer lies not in knowing which modalities may offer the best chance for disease response and prolonged survival. The challenge is in physicians' and other care providers' abilities to develop and maintain effective integrated relationships with their patients that are strong enough to provide the communication channel to convey the emotionally difficult messages relevant to prognosis, the true efficacy of therapy, the futility of care, and when active palliation is the best treatment modality available. Physician-patient communication is a cornerstone of high-quality medical care in all facets of medicine; however, in the highly emotional setting often present when caring for patients with advanced cancer, these channels of communication are stressed. In a study by Mohan et al,9 physicians on average demonstrated low skill at handling emotions and only moderate skill at discussing EOL goals. Failure of these channels of communication and undefined, incompletely developed partnerships between patient and physician or other care providers likely frequently result in provision of care that ultimately negatively affects the quality of the EOL (eg, a stay in the intensive care unit or chemotherapy in the final week of life).

This work as well as the American Society of Clinical Oncology statement support early introduction of palliative care for advanced cancer patients. In some cases, active palliative care in conjunction with standard oncologic care extends survival in advanced metastatic non–small-cell lung cancer as well as decreases the level of aggressive care at the EOL.10 This study is worth highlighting also because it inherently understood the need to include patients who were racially and ethnically diverse; racial and ethnic differences are important influences on many facets of health status and health care access, especially in physician-patient interaction and communication and provision of care.11

Selecting predictors from a large set of measures is fraught with difficulties, not the least of which is whether results capitalize on chance and the low likelihood for replications in independent samples. Future work should be broadly inclusive of the diversity of this country as well as those whose first language is not English.

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Article Information

Correspondence: Dr Zonderman, Intramural Research Program, National Institute on Aging, Biomedical Research Center, National Institutes of Health, 251 Bayview Blvd, Baltimore, MD 21224 (zondermana@mail.nih.gov).

Published Online: July 9, 2012. doi:10.1001/archinternmed.2012.3169

Financial Disclosure: None reported.

Funding/Support: The National Institute on Aging Intramural Research Program of the National Institutes of Health supported this research.

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