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© 2002 American Society for Clinical Oncology
Quality of Life at the End of Life: How Is the Solution Far Away?
City Hospital, Rimini, Italy To the Editor:We read with great interest the recent article by Jordhøy et al1 regarding the quality of life in a palliative care setting, in which two different models of palliative care were compared using a quality-of-life assessment. In this work, 434 cancer patients enrolled into two different models of palliative care were analyzed by using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire–C30 (EORTC QLQ-C30) and the Impact of Event Scale (IES). The authors found a compliance of approximately 70% in returning completed questionnaires after 2, 4, and 6 months of follow-up (240 of 285, 136 of 201, and 108 of 149 patients at risk, respectively), but the compliance dramatically decreased to approximately 30% (101 of 326 patients at risk) in the last month of life. Likewise, missing data in the questionnaires passed from 1.3% and 5.1% (EORTC QLQ-C30 and IES, respectively) at the time of entering the trial to 4.7% and 16.6% (EORTC QLQ-C30 and IES, respectively) in the last month of life. In the last years, many authors have analyzed different models of palliative care using a quality-of-life assessment,2 and all of them stressed the difficulty in assessing the quality of life in the last part of life. Quality-of-life assessment is known to represent one of the most debated topics in modern oncology, and this is particularly true for the field of palliative care. Indeed, when we review the literature regarding the quality of life at the end of life and quality of dying, we meet with many problems that probably cannot be solved with the tools of our knowledge. Patients themselves represent the source of any quality-of-life assessment, and it is known that at the end of life, patient compliance in responding to quality-of-life questionnaires is usually low, and the number of missing data in quality-of-life questionnaires is generally high.2-5 Many authors have tried to overcome these problems by identifying different sources of information, such as family caregivers, nurses, or physicians (the so-called proxies). However, although no definitive conclusions can be drawn, proxy interpretation about patient quality of life at the end of life would seem to agree only in part with the patient perception of quality of life. It follows that proxy interpretation can be considered only in part an alternative tool of quality-of-life assessment at the end of life.6-8 In our opinion, it should be mandatory to stress the deep difference existing between the concept of quality of life at the end of life and the concept of quality of dying. Although such concepts are commonly considered strictly related, they deeply differ from one another either from a speculative or a methodologic point of view.9-12 We believe that quality-of-life assessment in palliative care represents the main field of investigation in both clinical research and health care planning, but unfortunately no well-established and validated tools yet exist to evaluate and quantify the quality of life at the end of life. We really appreciate the work of Jordhøy et al,1 as well as all other works using a patient’s quality of life as a tool to evaluate different models of palliative care, but we are at the same time aware of the long way to be covered before finding the right methods to reliably assess quality of life at the end of life. We hope that the work of Jordhøy et al can play a pivotal role from a methodologic point of view in identifying an effective, well-established and validated tool with which to assess the quality of life at the end of life and to overcome the limits we encounter in daily clinical practice, as well as in clinical research and health care planning. REFERENCES
1.
Jordhøy MS, Fayers P, Loge JH, et al: Quality of life in palliative cancer care: Results from a cluster randomized trial. J Clin Oncol 19: 3884-3894, 2001
2.
Salisbury C, Bosanquet N, Wilkinson EK, et al: The impact of different models of specialist palliative care on patients’ quality of life: A systematic literature review. Palliat Med 13: 3-17, 1999
3.
Richards MA, Ramirez AJ: Quality of life: The main outcome measure of palliative care. Palliat Med 11: 89-92, 1997
4.
Donnelly S, Walsh D: Quality of life assessment in advanced cancer. Palliat Med 10: 275-283, 1996 5. Paci E, Miccinesi G, Toscani F, et al: Quality of life assessment and outcome of palliative care. J Pain Symptom Manage 21: 179-188, 2001[CrossRef][Medline]
6.
Nekolaichuk CL, Bruera E, Spachynski K, et al: A comparison of patient and proxy symptom assessment in advanced cancer patients. Palliat Med 13: 311-323, 1999
7.
Nekolaichuk CL, Maguire TO, Suarez-Almazor M, et al: Assessing the reliability of patient, nurse, and family caregiver symptom rating in hospitalized advanced cancer patients. J Clin Oncol 17: 3621-3630, 1999 8. Stromgren AS, Groenvold M, Pedersen L, et al: Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manage 21: 189-196, 2001[CrossRef][Medline] 9. Fowler FJ, Coppola KM, Teno JM: Methodological challenges for measuring quality of care at the end of life. J Pain Symptom Manage 17: 114-119, 1999[CrossRef][Medline] 10. Stewart AL, Teno JM, Patrick DL, et al: The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 17: 93-108, 1999[CrossRef][Medline] 11. Patrick DL, Engelberg RA, Curtis JR: Evaluating the quality of dying and death. J Pain Symptom Manage 22: 717-726, 2001[CrossRef][Medline] 12. Nerenz DR: Capacities and limitations of information system as data sources on quality of care at the end of life. J Pain Symptom Manage 22: 773-783, 2001[CrossRef][Medline]
Response
Norwegian University of Science and Technology, Trondheim, Nordland Central Hospital, Bodø, Norway In Reply:We appreciate the comments of Tassinari et al to our article presenting the evaluation of a palliative care intervention using self-reported quality of life as an outcome measure.1 As pointed out in their letter, assessment of quality of life at the end of life evokes serious methodologic problems. Although our study was not designed to evaluate the very last weeks of life, the patients were followed from enrollment to death, and the compliance data present a good illustration of what others have also experienced—that is, as death is approached, compliance decreases to an unacceptable level. Attrition owing to functional decline seems, however, inevitable in a palliative care setting. So how can this problem be solved? Our data indicate that compliance to some extent might be improved by keeping the questions simple. Both the Impact of Event Scale and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire–C30 were used, and the proportion of missing items were substantially higher for the Impact of Event Scale, which comprises the most complicated questions and wordings.1,2 Simple methods such as the Edmonton Symptom Assessment Schedule have been found useful in clinical practice3; however, its validity in research may be questioned. For clinical trials, it is also essential to take present knowledge about compliance into account in sample size estimation. Increasing the sample size may help to provide sufficient power for quality of life analyses at the end of life, but it will not help to avoid bias caused by missing answers from the patients who are most seriously ill. At present there is no agreement on how to measure quality of life at the end of life, neither with regard to content of measures or methods of data collection. Although patient self-report is regarded the gold standard as underlined by Tassinari et al, there are indications that proxy ratings may be a reliable option.4 Maybe it is time to face reality and accept that such methods are necessary supplements in end-of-life care. Palliative care aims at improvement of the patient’s quality of life, focusing both on physical as well as social, psychologic, and spiritual aspects. To evaluate such services, various questionnaires have already been developed and used.5,6 Documented quality-of-life achievements are, however, scarce.6 As suggested by Tassinari et al, the lack of positive results might be related to the fact that there are no well-established and validated tools, and that those applied have not been suitable for the purpose. We agree that new outcome methodology is needed; however, based on our own trial and experience, we find that a discussion about how palliative care services should be evaluated is equally important. In our opinion, it is highly unlikely that all aspects of quality of life among heterogeneous groups of advanced cancer patients are influenced by broadly defined interventions. Continued efforts to document the overall effectiveness of palliative care using multidimensional quality-of-life measures seem fruitless. Gathering all evidence, there is no doubt that palliative care is worthwhile.7 Such services have been found to increase satisfaction and to change the use of health care services into more and less costly home care.7,8 Hence, we need to move on. To improve both existing and new services, we need to be more specific in targeting our research, both in terms of interventions and instruments and which patients to include in the studies. Instead of evaluating broadly, it is probably more appropriate to evaluate, for example, the effectiveness in treatment of pain, targeting patients with pain and using pain assessment tools for evaluation, likewise, if social or psychologic problems are the issue. New methodology should be developed accordingly, and preferably with a common metric9 based on international consensus. Only by such an approach can data be compared across studies to the best interest of all patients in palliative care. REFERENCES 1. Jordhøy MS, Fayers P, Loge JH, et al: Quality of life in palliative cancer care: Results from a cluster randomized trial. J Clin Oncol 19: 3884-3894, 2001
2.
Jordhøy MS, Kaasa S, Fayers P, et al: Challenges in palliative care research; recruitment, attrition and compliance: Experience from a randomized controlled trial. Palliat Med 13: 299-310, 1999 3. Bruera E, Kuehn N, Miller MJ, et al: The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care 7 (2): 6-9, 1991[Medline]
4.
Sneeuw KC, Aaronson NK, Sprangers MA, et al: Value of caregiver ratings in evaluating the quality of life of patients with cancer. J Clin Oncol 15: 1206-1217, 1997
5.
Hearn J, Higginson IJ: Outcome measures in palliative care for advanced cancer patients: A review. J Publ Health Med 19: 193-199, 1997 6. Salisbury C, Bosanquet N, Wilkinson EK, et al: The impact of different models of specialist palliative care on patients’ quality of life: A systematic literature review. Palliat Med 13: 3-17, 1999
7.
Hearn J, Higginson I: Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 12: 317-332, 1998 8. Ringdal GI, Jordhøy MS, Kaasa S: Family satisfaction with end of life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage (in press) 9. Ware JE, Bjorner JB, Kosinski M: Practical implications of item response theory and computerized adaptive testing: A brief summary of ongoing studies of widely used headache impact scales. Med Care 38: II73-II82, 2000 (suppl)[Medline] This article has been cited by other articles:
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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