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JME Online First, published on July 8, 2014 as 10.1136/medethics-2014-102237 Commentary
Treatment decisions and changing selves Rebecca Dresser Treatment decisions are difficult when outcomes are highly uncertain. Many lifesaving interventions produce a variety of outcomes and no one can predict precisely where a particular patient will end up. It is also impossible to predict exactly how patients will evaluate outcomes that leave them with fewer abilities than they once had. In Long-term survival with unfavourable outcome: a qualitative and ethical analysis, Stephen Honeybul and colleagues present some surprising information about patients’ adaptive capacities.1 The analysis describes the results of semistructured interviews with patients who had life-saving surgery (decompressive craniectomy) following severe brain trauma. Patients suffering traumatic brain injury are incapacitated, and so the surgery decision must be made by clinicians and family members. Decompressive craniectomy yields a range of outcomes, including full recovery, mild, moderate or severe disability, and death. The authors interviewed patients in the severe disability outcome group. In all, 11 of 13 patients said that they would have consented to the surgery even if they had known its outcome. The patients expressing this view were either fully or substantially dependent on others for care. None were able to engage in activities like shopping and riding public transport on their own. Despite their limitations, they approved of the earlier decision to perform the surgery. As Honeybul and colleagues observe, these findings add weight to evidence from other studies suggesting that many patients are able to adjust to and accept disabilities resulting from traumatic brain injury. Furthermore, the authors note, patients often adapt ‘to a level of disability that competent individuals might deem unacceptable.’1 Indeed, in a separate study, Honeybul and colleagues found that few healthcare workers would consent to decompressive craniectomy if they were likely to survive with the level of disability these patients were facing.2 What message should we take from these findings? Honeybul and colleagues Correspondence to Professor Rebecca Dresser, Washington University, Law School, One Brookings Drive, Box 1120, St. Louis, MO 63130, USA; [email protected] Dresser R. J Med Ethics Month author 2014 Vol 0 (or No 0their Copyright Article
examine the implications for decisions about a risky, last-resort surgical procedure that can save patients’ lives, but also consign them to a life with serious impairment. In my view, the findings also have broader implications for medical decision-making. The broader message is that treatment preferences can change over time. The personal values, beliefs and emotions that shape medical choices are not necessarily fixed; instead, they can shift with changing circumstances. One research group examining the treatment preferences of elderly individuals before, soon after and months after a hospitalisation concluded that ‘Preferences for life-sustaining treatment are dependent on the context in which they are made, and thus individuals may express different treatment preferences when they are healthy than when they are ill.’3 This phenomenon has implications for competent patients making contemporaneous treatment decisions and for individuals engaged in advance treatment decision-making. Competent individuals making decisions about life-sustaining interventions need to know that their current views on acceptable and unacceptable treatment outcomes might be inaccurate. Their fears of a future reduction in quality of life might be misplaced, because they are underestimating their capacity to adjust to changed circumstances. I learnt this lesson myself when I was a cancer patient. To address the eating difficulties I encountered during treatment, my doctors recommended the placement of a gastrostomy feeding tube. But for weeks, I would not agree to this. My life was already dominated by the demands of medicine and I could no longer do many of the things that had previously made life worth living. With a feeding tube, I would be giving up one more of the normal activities I had once enjoyed. I was unwilling to accept another reduction in my quality of life. My refusal eventually created a serious health threat, however, and at that point I agreed to have the tube placed. Once this was done, I was able to get the nourishment I needed. I also learnt that life with a feeding tube was not nearly as bad as I had anticipated. I adapted to a loss that I previously thought would be intolerable.4
People make mistakes in forecasting how they will respond to different treatment alternatives. A growing body of research reveals that these sorts of mistakes occur whenever people make choices about what would be good and bad for them in the future. Empirical data suggest that people generally underestimate the extent to which their preferences and values will change in the future.5 People also tend to predict that ‘bad events will be worse than they turn out to be.’6 These flaws in human reasoning present particular problems for people preparing advance treatment directives. Patients who remain competent often have opportunities to revise an initial choice based on a questionable prediction. Clinicians and loved ones may challenge patients’ initial decisions, contending that patients are overestimating the burdens that treatment would impose. In my own case, that process led to just such a revision. But such opportunities are absent in the context of advance medical decisionmaking. Consider someone who refuses all life-sustaining interventions if she becomes cognitively impaired due to dementia. Suppose that she later finds life with dementia acceptable. By then, she will lack the capacity for independent decision-making that would enable her to revise her earlier choice. She was wrong in predicting that life with dementia would not be worth living, but cannot correct that mistake. Those at the bedside are left to determine whether to override her earlier choice because she has apparently adjusted to a condition she previously believed would be unacceptable.7 People making contemporaneous or advance treatment choices should recognise the biases that can affect their thinking. Clinicians should tell patients about the empirical evidence on adjustments to disability and other quality of life losses. It is likely that many people will resist the idea that they could be wrong about the sort of existence that would later be acceptable. Yet, there is increasing evidence that we are overconfident in predicting what will be good and bad for us in the future. The unsettling news is that we do not know our future selves as well as we think we do. Competing interests None. Provenance and peer review Commissioned; internally peer reviewed. To cite Dresser R. J Med Ethics Published Online First: [ please include Day Month Year] doi:10.1136/ medethics-2014-102237
employer) 2014. Produced by BMJ Publishing Group Ltd under licence.
1
Downloaded from http://jme.bmj.com/ on November 15, 2015 - Published by group.bmj.com
Commentary Received 19 May 2014 Accepted 16 June 2014
REFERENCES 1
2
▸ http://dx.doi.org/10.1136/medethics-2013-101960 J Med Ethics 2014;0:1–2. doi:10.1136/medethics-2014-102237
2
3
Honeybul S, Gillett GR, Ho KM, et al. Long-term survival with unfavourable outcome: a qualitative and ethical analysis. J Med Ethics. Published Online First: 25 Jun 2014. doi:10.1136/medethics-2013-101960 Honeybul S, Ho K, O’Hanlon S. Access to reliable information about long-term prognosis influences clinical opinion on use of lifesaving intervention. PLoS One 2012;7:e32375. Ditto P, Jacobson J, Smucker W, et al. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making 2006;26:313–22.
4
5 6 7
Dresser R. Autonomy and persuasion. In: Dresser R, ed. Malignant: medical ethicists confront cancer. New York, NY: Oxford University Press, 2012:57–69. Quoidbach J, Gilbert D, Wilson T. The end of history illusion. Science 2013;339:96–8. Gilbert D, Wilson T. Prospection: experiencing the future. Science 2007;317:1351–4. Dresser R. Dworkin on dementia: elegant theory, questionable policy. Hastings Cent Rep 1995;25(6):32–8.
Dresser R. J Med Ethics Month 2014 Vol 0 No 0
Downloaded from http://jme.bmj.com/ on November 15, 2015 - Published by group.bmj.com
Treatment decisions and changing selves Rebecca Dresser J Med Ethics published online July 8, 2014
Updated information and services can be found at: http://jme.bmj.com/content/early/2014/07/08/medethics-2014-102237
These include:
References Email alerting service
This article cites 4 articles, 3 of which you can access for free at: http://jme.bmj.com/content/early/2014/07/08/medethics-2014-102237 #BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
JME Online First, published on July 8, 2014 as 10.1136/medethics-2014-102237 Commentary
Treatment decisions and changing selves Rebecca Dresser Treatment decisions are difficult when outcomes are highly uncertain. Many lifesaving interventions produce a variety of outcomes and no one can predict precisely where a particular patient will end up. It is also impossible to predict exactly how patients will evaluate outcomes that leave them with fewer abilities than they once had. In Long-term survival with unfavourable outcome: a qualitative and ethical analysis, Stephen Honeybul and colleagues present some surprising information about patients’ adaptive capacities.1 The analysis describes the results of semistructured interviews with patients who had life-saving surgery (decompressive craniectomy) following severe brain trauma. Patients suffering traumatic brain injury are incapacitated, and so the surgery decision must be made by clinicians and family members. Decompressive craniectomy yields a range of outcomes, including full recovery, mild, moderate or severe disability, and death. The authors interviewed patients in the severe disability outcome group. In all, 11 of 13 patients said that they would have consented to the surgery even if they had known its outcome. The patients expressing this view were either fully or substantially dependent on others for care. None were able to engage in activities like shopping and riding public transport on their own. Despite their limitations, they approved of the earlier decision to perform the surgery. As Honeybul and colleagues observe, these findings add weight to evidence from other studies suggesting that many patients are able to adjust to and accept disabilities resulting from traumatic brain injury. Furthermore, the authors note, patients often adapt ‘to a level of disability that competent individuals might deem unacceptable.’1 Indeed, in a separate study, Honeybul and colleagues found that few healthcare workers would consent to decompressive craniectomy if they were likely to survive with the level of disability these patients were facing.2 What message should we take from these findings? Honeybul and colleagues Correspondence to Professor Rebecca Dresser, Washington University, Law School, One Brookings Drive, Box 1120, St. Louis, MO 63130, USA; [email protected] Dresser R. J Med Ethics Month author 2014 Vol 0 (or No 0their Copyright Article
examine the implications for decisions about a risky, last-resort surgical procedure that can save patients’ lives, but also consign them to a life with serious impairment. In my view, the findings also have broader implications for medical decision-making. The broader message is that treatment preferences can change over time. The personal values, beliefs and emotions that shape medical choices are not necessarily fixed; instead, they can shift with changing circumstances. One research group examining the treatment preferences of elderly individuals before, soon after and months after a hospitalisation concluded that ‘Preferences for life-sustaining treatment are dependent on the context in which they are made, and thus individuals may express different treatment preferences when they are healthy than when they are ill.’3 This phenomenon has implications for competent patients making contemporaneous treatment decisions and for individuals engaged in advance treatment decision-making. Competent individuals making decisions about life-sustaining interventions need to know that their current views on acceptable and unacceptable treatment outcomes might be inaccurate. Their fears of a future reduction in quality of life might be misplaced, because they are underestimating their capacity to adjust to changed circumstances. I learnt this lesson myself when I was a cancer patient. To address the eating difficulties I encountered during treatment, my doctors recommended the placement of a gastrostomy feeding tube. But for weeks, I would not agree to this. My life was already dominated by the demands of medicine and I could no longer do many of the things that had previously made life worth living. With a feeding tube, I would be giving up one more of the normal activities I had once enjoyed. I was unwilling to accept another reduction in my quality of life. My refusal eventually created a serious health threat, however, and at that point I agreed to have the tube placed. Once this was done, I was able to get the nourishment I needed. I also learnt that life with a feeding tube was not nearly as bad as I had anticipated. I adapted to a loss that I previously thought would be intolerable.4
People make mistakes in forecasting how they will respond to different treatment alternatives. A growing body of research reveals that these sorts of mistakes occur whenever people make choices about what would be good and bad for them in the future. Empirical data suggest that people generally underestimate the extent to which their preferences and values will change in the future.5 People also tend to predict that ‘bad events will be worse than they turn out to be.’6 These flaws in human reasoning present particular problems for people preparing advance treatment directives. Patients who remain competent often have opportunities to revise an initial choice based on a questionable prediction. Clinicians and loved ones may challenge patients’ initial decisions, contending that patients are overestimating the burdens that treatment would impose. In my own case, that process led to just such a revision. But such opportunities are absent in the context of advance medical decisionmaking. Consider someone who refuses all life-sustaining interventions if she becomes cognitively impaired due to dementia. Suppose that she later finds life with dementia acceptable. By then, she will lack the capacity for independent decision-making that would enable her to revise her earlier choice. She was wrong in predicting that life with dementia would not be worth living, but cannot correct that mistake. Those at the bedside are left to determine whether to override her earlier choice because she has apparently adjusted to a condition she previously believed would be unacceptable.7 People making contemporaneous or advance treatment choices should recognise the biases that can affect their thinking. Clinicians should tell patients about the empirical evidence on adjustments to disability and other quality of life losses. It is likely that many people will resist the idea that they could be wrong about the sort of existence that would later be acceptable. Yet, there is increasing evidence that we are overconfident in predicting what will be good and bad for us in the future. The unsettling news is that we do not know our future selves as well as we think we do. Competing interests None. Provenance and peer review Commissioned; internally peer reviewed. To cite Dresser R. J Med Ethics Published Online First: [ please include Day Month Year] doi:10.1136/ medethics-2014-102237
employer) 2014. Produced by BMJ Publishing Group Ltd under licence.
1
Downloaded from http://jme.bmj.com/ on November 15, 2015 - Published by group.bmj.com
Commentary Received 19 May 2014 Accepted 16 June 2014
REFERENCES 1
2
▸ http://dx.doi.org/10.1136/medethics-2013-101960 J Med Ethics 2014;0:1–2. doi:10.1136/medethics-2014-102237
2
3
Honeybul S, Gillett GR, Ho KM, et al. Long-term survival with unfavourable outcome: a qualitative and ethical analysis. J Med Ethics. Published Online First: 25 Jun 2014. doi:10.1136/medethics-2013-101960 Honeybul S, Ho K, O’Hanlon S. Access to reliable information about long-term prognosis influences clinical opinion on use of lifesaving intervention. PLoS One 2012;7:e32375. Ditto P, Jacobson J, Smucker W, et al. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making 2006;26:313–22.
4
5 6 7
Dresser R. Autonomy and persuasion. In: Dresser R, ed. Malignant: medical ethicists confront cancer. New York, NY: Oxford University Press, 2012:57–69. Quoidbach J, Gilbert D, Wilson T. The end of history illusion. Science 2013;339:96–8. Gilbert D, Wilson T. Prospection: experiencing the future. Science 2007;317:1351–4. Dresser R. Dworkin on dementia: elegant theory, questionable policy. Hastings Cent Rep 1995;25(6):32–8.
Dresser R. J Med Ethics Month 2014 Vol 0 No 0
Downloaded from http://jme.bmj.com/ on November 15, 2015 - Published by group.bmj.com
Treatment decisions and changing selves Rebecca Dresser J Med Ethics published online July 8, 2014
Updated information and services can be found at: http://jme.bmj.com/content/early/2014/07/08/medethics-2014-102237
These include:
References Email alerting service
This article cites 4 articles, 3 of which you can access for free at: http://jme.bmj.com/content/early/2014/07/08/medethics-2014-102237 #BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
