|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
Originally published as JCO Early Release 10.1200/JCO.2008.21.1987 on February 23 2009 © 2009 American Society of Clinical Oncology.
"I Wouldn't Do That if I Were You"—The Power of Regret When Treating the IncurablePediatric Hematology/Oncology and Bone Marrow Transplantation, Helen DeVos Children's Hospital, Grand Rapids, MI
Pediatrics, Helen DeVos Children's Hospital, Grand Rapids, MI To the Editor: Mack et al1 deserve to be congratulated for designing a study that captures critically needed information on cancer-directed therapy for pediatric oncology patients with no realistic chance for cure. Although this study is limited by largely unavoidable factors (ie, limited response rates, and recall, ethnic, and gender biases), it provides valuable insight into the goals and motivations of parents making difficult end-of-life care decisions. Its significance for the reader lies in the new knowledge that can be drawn upon in counseling parents who encounter similar circumstances. However, the primary hypothesis—that parents who chose treatment for their children after they recognized that cure was unlikely would not recommend others do the same—has led the authors to conclusions that are potentially misleading, whereas a more critical issue has been missed. As presented, the conclusion implies to the reader that parents who chose treatment when cure was unlikely now regret having done so. Therefore, parental remorse could be added to the list of usual arguments against treating a child unlikely to be cured (ie, false hope, inappropriate risk versus benefit, and so on). The problem with this conclusion is that it has been made on the basis of clinical vignettes. Parents were not asked directly if they would make different personal choices. Rather, they were given hypothetical scenarios that could not possibly capture the complexities of real-life variables. Although the authors include references supporting the use of clinical vignettes in end-of-life care research, they also state that the true value of the vignette comes into play in assessing general values and preferences rather than in guiding practice. Future studies could obtain more accurate reflections by asking parents directly whether in retrospect they would have made different choices for their children. Other variables that could be studied include assessments of the views of nonresponding parents and the role of children in decision making. It should come as no surprise that the selected population of parents whose children have died might express regret for some decisions. Regret is a powerful negative emotion that implies self-blame for unfortunate events.2 Regret has been described as a counterfactual emotion: a belief that the present might be different had different decisions been made in the past.3 Counterfactual thinking is thought to be beneficial, in that it can help one make sense of a negative experience by identifying a cause for the problem.4 With the understanding that emotion may cloud logical thinking, what parents might now hypothetically recommend should only be used with great caution in guiding clinical practice. Even if it were valid to conclude that most parents regret having chosen therapy for their children, what would we make of those who do not regret it? Conversely applying the authors' data, one could assert that a significant portion of parents who chose therapy feel that their children experienced no suffering (39%) and at least some benefit (43%) as a result of the treatment, and roughly one of three parents would recommend others choose treatment for their children. From this perspective, different deductions—and as a result, alternate practice insights—can be reached. Furthermore, the study population does not include parents whose children were unlikely to be cured, and lived. Although these parents may be in the minority, it is likely that if they were similarly studied, the conclusions would be quite different. Without an ability to predict outcome when making decisions in real time, it is natural for any one particular parent to hope that his or her child becomes the exception to a bleak prognosis. That this study was accomplished at all serves as evidence that the views of parents are worthy of comprehensive understanding. Much care was taken to assess parents' behavior, motivations, and recommendations to other parents and to us. The message of parents gleaned from this study is clear. Although the minority of parents chose cancer-directed therapy, and the minority of those parents would recommend others do the same, 91% of all parents, whether they chose treatment or not, feel that physicians should offer treatment. That is, parents believe we should offer therapy even when we do not expect it to cure, and most parents would ultimately neither choose nor recommend treatment. Regardless of how one colors the data with adjectives, and independent of any choices made, real or theoretical, parents want the right to choose. The most critical issue emerging from this study is not what the beliefs of parents are, but rather how much influence parental views should have in decision making. The real clinical struggle arises when parental choice runs contrary to professional judgment. Although this study definitively answers few questions, it underscores the need to establish an ethical and medical framework for decision making when cure is unlikely. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The author(s) indicated no potential conflicts of interest. REFERENCES
1. Mack JW, Joffe S, Hilden JM, et al: Parents' views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol 26:4759–4764, 2008. 2. Saffrey C, Summerville A, Roese NJ: Praise for regret: People value regret above other negative emotions. Motiv Emot 32:46–54, 2008.[CrossRef][Medline] 3. Kahneman DM, Miller DT: Norm theory: Comparing reality to its alternatives. Psychol Rev 93:136–153, 1986.[CrossRef] 4. Epstude K, Roese NJ: The functional theory of counterfactual thinking. Pers Soc Psychol Rev 12:168–192, 2008.
Related Articles
Related Reply
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||
|
|||||||||||
|
|
Copyright © 2009 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|
