ANALYSIS
AND
COMMENTARY
Financial and Social Complications as Barriers to Satisfaction with Life Among Living Kidney Donors Mary C. Simmerling1,2
ne of the key ethical challenges related to living organ donation is the completeness of the voluntary informed consent of the organ donor (1). Essential to the meaningfulness of the informed consent process is the presentation of the potential risks and benefits of organ donation to the living donor candidate. Although these risks and benefits were initially focused almost solely on the medical risks of the organ donation procedure itself, there is now a substantial body of research that establishes that additional factors are also important in informed consent decision-making, including a growing body of research related to post-donation quality of life (QOL). Still, little is known about living organ donors’ satisfaction with life (SWL) after donation. In this issue, Messersmith et al. (2) extend their earlier research on postdonation healthrelated QOL among living kidney donors (3) to examine the donors’ SWL. In the current report, the authors note that SWL is distinct and different from what is measured by health-related QOL because it focuses on subjective and psychologic measures related to personal judgments about one’s own life. It aims to identify differences between one’s actual circumstances compared to one’s expectations of what one’s circumstances would be. Given the responsibility to ensure the voluntary, informed consent of living organ donors, it is incumbent on us to put them in the best possible position to assess the risks and benefits associated with donation and apply those judgments to their own circumstances. Communicating a fuller understanding of the potential risks and benefits that may have an impact on postdonation SWL is essential to making informed consent more meaningful. Although limited by the absence of a predonation measure of SWL, measures of SWL of donor candidates who chose not to or were not able to donate, reliance on recalled experiences of donation that range over a wide number of
O
The author declares no funding or conflicts of interest. 1 Weill Cornell Medical College, Division of Nephrology, New York, NY. 2 Address correspondence to: Mary C. Simmerling, Ph.D., 445 East 69th Street, Suite 211A, New York NY 10021. E-mail: [email protected] Received 29 June 2014. Accepted 30 June 2014. Copyright * 2014 by Lippincott Williams & Wilkins ISSN: 0041-1337/14/9812-1258 DOI: 10.1097/TP.0000000000000389
1258
www.transplantjournal.com
years, and a sample that is less racially and ethnically diverse and more related to their recipients than the recent overall U.S. living donor population, several of the findings in this study suggest that the data related to postdonation SWL among living kidney donors are rich and can contribute to ongoing ethics and policy discussions in this area. Among their findings are issues that have been central to discussions related to motivations to donate and how they may or may not be related to recipient outcomes. The authors found that the pressure to donate or not is related to lower SWL scores, whereas recipient outcome is not significantly related to SWL among donors. This reconfirms that the voluntariness of the informed consent process is paramount and suggests that providing willing donor candidates the opportunity to donate is in itself important regardless of whether their donation achieves the ultimate goal of improving, extending, or saving the life of the recipient. Although not surprising, the finding that financial burdens related to donation were associated with lower SWL is an important observation of this study. Recent research by Ubel and colleagues recommends that as part of full disclosure to patients, out of pocket costs associated with medical interventions should be considered as side effects and explicitly included in discussions about the risks and benefits of a particular intervention (4). They suggest that patients should be informed about the potential financial costs associated with medical interventions so that they can be allowed to decide whether the potential benefits outweigh those risks. In the context of living organ donation, information about the potential financial burdens of living organ donation may play an important role in judgments about the risk-benefit assessment potential living organ donors make, and so should be included as part of the informed consent process. However, as Ubel and colleagues note (5), these costs are often uncertain in general, and they may therefore be difficult to describe. The calculus that potential donors use when making judgments about the risks and benefits of donation, and the impact of the decisions on their own lives and circumstances, remains poorly understood. What Messersmith et al. have shown is that the donation experience seems to impact their SWL in measurable and meaningful ways. In some contexts, the experience may enhance their SWL; and in others, it may diminish it. Gaining a better understanding of the factors that impact donor SWL will be an important contribution to the field. With this information, we may be able to better Transplantation
& Volume 98, Number 12, December 27, 2014
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Simmerling
* 2014 Lippincott Williams & Wilkins
anticipate and mitigate factors that have a negative impact on donor SWL and support those that enhance SWL.
2.
3.
REFERENCES 1.
Abecassis M, Adams M, Adams P, et al. Consensus statement on the live organ donor. JAMA 2000; 284: 2919.
4. 5.
1259
Messersmith E, Gross C, Beil C, et al. Satisfaction with life among living kidney donors: a RELIVE study of long-term donor outcomes. Transplantation 2014; 98: 1294. Gross CR, Messersmith EE, Hong BA, et al. Health-related quality of life in kidney donors from the last five decades: results from the RELIVE study. Am J Transplant 2013; 13: 2924. Ubel PA, Abernethy AP, Zafar SY. Full disclosureVout-of-pocket costs as side effects. N Engl J Med 2013; 369: 1484. Riggs KR, Ubel PA. Overcoming barriers to discussing out-of-pocket costs with patients. JAMA 2014; 174: 849.
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A6Q921H
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
AND
COMMENTARY
Financial and Social Complications as Barriers to Satisfaction with Life Among Living Kidney Donors Mary C. Simmerling1,2
ne of the key ethical challenges related to living organ donation is the completeness of the voluntary informed consent of the organ donor (1). Essential to the meaningfulness of the informed consent process is the presentation of the potential risks and benefits of organ donation to the living donor candidate. Although these risks and benefits were initially focused almost solely on the medical risks of the organ donation procedure itself, there is now a substantial body of research that establishes that additional factors are also important in informed consent decision-making, including a growing body of research related to post-donation quality of life (QOL). Still, little is known about living organ donors’ satisfaction with life (SWL) after donation. In this issue, Messersmith et al. (2) extend their earlier research on postdonation healthrelated QOL among living kidney donors (3) to examine the donors’ SWL. In the current report, the authors note that SWL is distinct and different from what is measured by health-related QOL because it focuses on subjective and psychologic measures related to personal judgments about one’s own life. It aims to identify differences between one’s actual circumstances compared to one’s expectations of what one’s circumstances would be. Given the responsibility to ensure the voluntary, informed consent of living organ donors, it is incumbent on us to put them in the best possible position to assess the risks and benefits associated with donation and apply those judgments to their own circumstances. Communicating a fuller understanding of the potential risks and benefits that may have an impact on postdonation SWL is essential to making informed consent more meaningful. Although limited by the absence of a predonation measure of SWL, measures of SWL of donor candidates who chose not to or were not able to donate, reliance on recalled experiences of donation that range over a wide number of
O
The author declares no funding or conflicts of interest. 1 Weill Cornell Medical College, Division of Nephrology, New York, NY. 2 Address correspondence to: Mary C. Simmerling, Ph.D., 445 East 69th Street, Suite 211A, New York NY 10021. E-mail: [email protected] Received 29 June 2014. Accepted 30 June 2014. Copyright * 2014 by Lippincott Williams & Wilkins ISSN: 0041-1337/14/9812-1258 DOI: 10.1097/TP.0000000000000389
1258
www.transplantjournal.com
years, and a sample that is less racially and ethnically diverse and more related to their recipients than the recent overall U.S. living donor population, several of the findings in this study suggest that the data related to postdonation SWL among living kidney donors are rich and can contribute to ongoing ethics and policy discussions in this area. Among their findings are issues that have been central to discussions related to motivations to donate and how they may or may not be related to recipient outcomes. The authors found that the pressure to donate or not is related to lower SWL scores, whereas recipient outcome is not significantly related to SWL among donors. This reconfirms that the voluntariness of the informed consent process is paramount and suggests that providing willing donor candidates the opportunity to donate is in itself important regardless of whether their donation achieves the ultimate goal of improving, extending, or saving the life of the recipient. Although not surprising, the finding that financial burdens related to donation were associated with lower SWL is an important observation of this study. Recent research by Ubel and colleagues recommends that as part of full disclosure to patients, out of pocket costs associated with medical interventions should be considered as side effects and explicitly included in discussions about the risks and benefits of a particular intervention (4). They suggest that patients should be informed about the potential financial costs associated with medical interventions so that they can be allowed to decide whether the potential benefits outweigh those risks. In the context of living organ donation, information about the potential financial burdens of living organ donation may play an important role in judgments about the risk-benefit assessment potential living organ donors make, and so should be included as part of the informed consent process. However, as Ubel and colleagues note (5), these costs are often uncertain in general, and they may therefore be difficult to describe. The calculus that potential donors use when making judgments about the risks and benefits of donation, and the impact of the decisions on their own lives and circumstances, remains poorly understood. What Messersmith et al. have shown is that the donation experience seems to impact their SWL in measurable and meaningful ways. In some contexts, the experience may enhance their SWL; and in others, it may diminish it. Gaining a better understanding of the factors that impact donor SWL will be an important contribution to the field. With this information, we may be able to better Transplantation
& Volume 98, Number 12, December 27, 2014
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Simmerling
* 2014 Lippincott Williams & Wilkins
anticipate and mitigate factors that have a negative impact on donor SWL and support those that enhance SWL.
2.
3.
REFERENCES 1.
Abecassis M, Adams M, Adams P, et al. Consensus statement on the live organ donor. JAMA 2000; 284: 2919.
4. 5.
1259
Messersmith E, Gross C, Beil C, et al. Satisfaction with life among living kidney donors: a RELIVE study of long-term donor outcomes. Transplantation 2014; 98: 1294. Gross CR, Messersmith EE, Hong BA, et al. Health-related quality of life in kidney donors from the last five decades: results from the RELIVE study. Am J Transplant 2013; 13: 2924. Ubel PA, Abernethy AP, Zafar SY. Full disclosureVout-of-pocket costs as side effects. N Engl J Med 2013; 369: 1484. Riggs KR, Ubel PA. Overcoming barriers to discussing out-of-pocket costs with patients. JAMA 2014; 174: 849.
LWW authors can order up to 500 copies of their articles at a special rate. In addition to print, article ePrints are also available.
LWW Article Reprints are: ■ Professional, high-quality documents ■ Printed on premium paper ■ Inclusive of images, charts, graphs,
and graphics ■ Available with covers (optional)
Order today! To place your order, visit www.LWWonline.com/reprints or call 1-866-903-6951.
A6Q921H
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
