Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Assessment of Quality of Life in Palliative Care

Stein Kaasa, MD, PhD

Palliative Medicine Unit, Trondheim Regional Hospital
Trondheim, Norway

[Citation: Kaasa S. Assessment of quality of life in palliative care. Innovations in End-of-Life Care, 2000;2(6), www.edc.org/lastacts]

Introduction

Most clinicians and researchers agree that improvement of the patient's quality of life is the ultimate goal in palliative care. A similar approach is taken by the World Health Organization (WHO), defining palliative care as "the active care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment."1 As early as 1948, the WHO included subjectivity in the definition of health, as follows: "Health is not only the absence of infirmity and disease, but also a state of complete physical, mental and social well-being."2

There are challenges related to both of these WHO definitions. What is the meaning or the definition of the term "quality of life"? Do patients and their families have distinct understandings of this concept? Applying this framework to clinical practice is a challenge. For example, many clinicians ask, "What is the mandate of professional health care providers? How and how much should we, as professionals, intervene in the patients' social and spiritual life?" Another challenge is related to measuring quality of life in patient-focused palliative care and in research. Is it possible to measure quality of life? Should it be measured? If one decides to measure it, should it be done using a questionnaire or a more open-ended format?

Definition

Definitions are important. They can serve as an impetus for changing practice, for introducing new programs, and for working toward the allocation of more resources for palliative care. Moreover, the understanding of these concepts influences how medicine is practiced. The understanding of the concept of quality of life is affected by several factors, such as clinical experience (i.e., oncology vs. palliative care and hospice vs. palliative medicine), the patient population (i.e., last day of life vs. month of palliative treatment), profession (i.e., doctor, nurse, chaplain, social worker), culture, and the context/use of the concept (research vs. clinic).

In this issue, the Edmonton Palliative Care Program is described by Dr. Robin Fainsinger and Carleen Brenneis, RN. Dr. Fainsinger defines quality of life as maximizing patient and family comfort across four broad domains: the physical, psychological, spiritual and existential.3 A similar approach is taken by Mariela Bertolino, MD, who is working in palliative care in Buenos Aires, Argentina. She defines physical symptoms, psychological distress, social and financial issues, all of which are related to spiritual or existential problems as the core elements of the quality of life concept.4 From a practical, clinical point of view, Carleen Brenneis focuses on what is important day-to-day for the patient and the family. From her experience, clinicians need to meet people's physical and social needs before they can focus on their emotional and spiritual needs.5

Most clinicians' experience with patients and families would confirm her observations. Without sufficient symptom control, communication with patients and their families will be focused on symptoms and not on family relationships and the process of saying farewell. What guidelines should be followed to provide optimal care to patients and families? The answer should be linked to evidence-based medicine. In addition to calling on past experience and the particular information obtained from each patient and family, case by case, doctors should use evidence-based medicine. To this end, a systematic, prospective collection of information about patients' (and families') subjective health is paramount. In summary, the approach described so far to quality of life is clinically focused and closely related (or identical) with the concept called health-related quality of life (HRQOL). The development of HRQOL was guided by the need to have subjective outcomes in clinical studies and measures intended to assess physical, social and emotional domains.6,7,8,9

The concept of health-related quality of life has been challenged in reviews in general medicine and by comments from many clinicians in the field of palliative care. Gill and Feinstein take a philosophical position arguing that quality of life can only be suitably measured by targeting the opinions of patients and by supplementing or replacing the existing instruments developed by experts.10

Others have agreed that there is clear evidence of a variety of factors influencing both suffering and individual perception of quality of life. Meaning and transcendence are important.11 Furthermore, it has been acknowledged that the experience of terminally ill patients can only be understood as a dynamic phenomenon at two levels—the surface level, where language is literal and the deep level where the mode of knowing is intuitive.12 In measuring quality of life during end-of-life care, these researchers argue that it can only be assessed from an individual perspective without imposing a predetermined external value system. This stance implies that the patients themselves should be given the opportunity to choose the domains that are important to their quality of life, at a given point in time. This approach defines quality of life as a global, overall perspective, which includes in its scope one's philosophical perspectives on life. This approach challenges the health-related orientation and draws attention towards asking the patients not only to rate their symptoms or worries, but also to give relative value to them. Is such an approach too much to ask of staff working in a clinical setting?

Assessment of Health-Related Quality of Life

Quality of life has practical implications for health care: one can measure changes in subjective health brought about by a medical intervention. Additionally, it may also be regarded as a spiritual concept related to meaning and transcendence. In research and daily clinical practice, HRQOL instruments that focus on subjective symptoms and function, such as the EORTC-QLQ-C30,13,14 and checklists specifically developed for palliative care, such as the Edmonton Symptom Assessment Schedule (ESAS), can be used.15. This concrete, practical approach can improve symptom control and thereby improve patients' quality of life. Such instruments can also be used to accumulate knowledge about patient populations. For example, collecting data on symptoms and how well they are treated within a health care program can allow for comparisons of effectiveness across programs using these measures. However, as clinicians caring for patients as individual human beings, one must recognize their spirituality, individual suffering and/or emotional distress as integral to their care. By talking to patients and families we will learn more about these domains and so be able to address the meaning of quality of life in a more complete way.

The techniques for collecting information about subjective domains of life quality might include interviews or questionnaires. To assess health-related quality of life, standardized questionnaires are most often used. In palliative care, especially during the end of life, patients may not be able to complete an instrument that requires self-report. Under such circumstances, a proxy or health professional will need to rate the patient's experience.

During the last two decades, many tools have been developed and used, making comparisons between samples difficult. Most of these quality of life assessment tools were developed in oncology or for non-malignant chronic disease such as chronic pain, rheumatoid arthritis, heart failure, headache and diabetes. Few instruments have been developed specifically for assessing quality of life in patients near the end of life. The heterogeneity of purpose and scales in these measures further complicates the question of cross-study comparisons.

In selecting measures for use in clinical research, quality assurance programs, or for individual patients, the content of the measure is of crucial importance. Additionally, standardization and the repetitive use of the same instrument builds a shared clinical understanding of the meaning of a particular score on a specific scale or item. The clinical significance of, for example, a fatigue score of 60 on a zero to 100 scale must be apprehended if that score is to be used in the clinical decision-making process. The score must resonate with shared meaning and provide an impetus to action for clinicians, in the same way that a hemoglobin of 7.8 which suggests the possibility of a blood transfusion or some other type of intervention to adjust the hemoglobin level. One problem with all existing scales and measures is that a 60 on one domain, does not necessarily mean the same as 60 on another domain, or to put in another way, the metric is not similar between scales and single items.

Even without any gold standard for assessment of health-related quality of life in palliative care, some recommendations are possible. In a daily clinical setting, instruments which can be applied directly without any computation are most appropriate. A good example is the ESAS. However, one must be aware of the limitations of using single items covering complex domains both with regard to the limits of reliability and validity. For use in clinical research, more comprehensive HRQOL instruments such as the EORTC-QLQ-C30 can be used. Another instrument to consider is the McGill Quality of life questionnaire (MQOL), which also includes existential domains, in contrast to the EORTC-QLQ-C30.16 Specific instruments have been developed to assess quality of life from a more individual perspective, for example, the schedule for the evaluation of individual QOL (SEIQoL) and the SEIQoL-DW (the schedule for the evaluation for individual- direct weighting) a brief measure derived from the SEIQoL.17,18 Designers of this instrument claim that by allowing the respondent to define the areas to be measured, the tool offers a more relevant and accurate measure of quality of life, than forced choice questionnaires. The SEIQOL-DW might be well suited for individual consultations, but poses problems as an outcome measure for assessing the quality of life among patients across palliative care services or in research aiming at detecting an effect of a specific intervention. Its strength—the capacity to capture individualized data would become its weakness, because these individually chosen domains are statistically incomparable. Therefore, this instrument does not seem appropriate for population-based use.

There are few reliable and valid tools for use in measuring quality of life during end-of-life care. At the final stages of an illness, interviews and/or observations must be used as the method to collect information. Until new and better instruments are developed, a pragmatic approach to assessment is necessary. One of the simple tools, for example, the ESAS or one of the HRQOL instruments, such as the EORTC-QLQ-C30, can be used in interview-based and/or observation-based situations. It is, however, important to underline that neither of these instruments has been developed nor validated for use during the final stage of a patient's life. Furthermore, there is much evidence that considerable differences often exist between proxy rating and patient rating of subjective outcomes.19,20

In summary, by systemizing the collection of information on patient symptoms and distress, appropriate interventions can be implemented and patient quality of life can be improved. A dynamic approach in clinical practice is needed by combining systematic assessment with individual patient information and communication. At present, one of the internationally validated questionnaires for use in research, for example, the EORTC-QLQ-C30, is most promising. In daily clinical practice, a simpler tool, such as the ESAS, should be used.

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