American Journal of Transplantation 2014; 14: 172–177 Wiley Periodicals Inc.
C
Copyright 2013 The American Society of Transplantation and the American Society of Transplant Surgeons doi: 10.1111/ajt.12519
When the Living and the Deceased Cannot Agree on Organ Donation: A Survey of US Organ Procurement Organizations (OPOs) W. J. Chon1,*, M. A. Josephson1, E. J. Gordon2, Y. T. Becker3, P. Witkowski3, D. J. Arwindekar1, A. Naik1, J. R. Thistlethwaite Jr.3, C. Liao4 and L. F. Ross3,5 1
Section of Nephrology, University of Chicago, Chicago, IL 2 Comprehensive Transplant Center, Northwestern University, Chicago, IL 3 Section of Transplant Surgery, University of Chicago, Chicago, IL 4 Section of Health Studies, University of Chicago, Chicago, IL 5 MacClean Center for Clinical Ethics, University of Chicago, Chicago, IL Corresponding author: W. James Chon, [email protected]
The legal concept of first person authorization (FPA) is based on the principle that a decision by a person with decision-making capacity should be respected even after he or she dies. Although the transplant community largely supports this concept, its implementation has not been universal. We conducted a web-based survey of all 58 Organ Procurement Organization (OPO) executive directors in the United States to assess OPOs’ procurement policies and practices in the context of family objections. All 58 respondents (100%) responded to our survey. All OPOs except one have an online donor registration website. Most OPOs (89%) (51 of 57 respondents) estimated that the frequency of family objecting to organ donation in cases of registered donors was 75%) they encounter family objections in the face of an FPA and (4) whether they move forward despite family objection; and if yes, whether their OPO had ever been subject to any litigation as a consequence. We calculated the FPA conversion rate based on the response to the following question, ‘‘In what percentage of FPA cases does your OPO move forward with donation?’’ and the following choices were given: 0–10%, 11–25%, 26–50%, 51–75% or >75%. Factors influencing the decision to procure organs were ascertained. Respondents were asked to rate six factors used in Wendler and Dickert’s survey (registered donor status, potential legal liability, adverse publicity, state laws, impact on deceased’s family, and presumed effect on donation rates) (18) as ‘‘very likely,’’ ‘‘somewhat likely,’’ ‘‘somewhat unlikely’’ or ‘‘very unlikely’’ to affect their decision in FPA situation. The survey also provided seven scenarios in which the deceased’s and the family’s wishes were discordant or unknown. For each scenario, a 4-point Likert scale was used to rate the likelihood of procuring organs (very likely, somewhat likely, somewhat unlikely or very unlikely).
Data collection The survey was administered by the AOPO in June 2012. An introductory email was sent to each OPO’s executive director explaining the purpose of the study, and a link to a commercial survey website, SurveyMonkey.com, was included in the email. Either the executive director or an experienced OPO employee of his/her choice was asked to complete the online survey. Anonymity of the respondents and the OPO was assured. A reminder email was sent to the OPO if no response was received within 2 weeks.
173
Chon et al Statistical analysis For statistical purposes, the categorical variables for the likelihood of organ procurement were grouped as ‘‘likely’’ or ‘‘unlikely’’ for data analysis in both FPA-compliant and FPA-noncompliant groups. The association between questions was assessed with the chi-squared or Fisher’s exact test depending on the number in each 2 2 table or responses. All statistical analyses were conducted using IBM SPSS Statistics (version 19; IBM Company, Chicago, IL); the level of significance was set at p < 0.05. If the OPO had a donation service area (DSA) that covered more than one state and if their responses to a question varied depending on the states they served, the answer for the largest area was used in data analysis.
Results Respondents/OPO DSA All 58 OPOs completed or partially completed the online questionnaire (100% response rate). Of the 58 respondents, 40 (69%) were either executive directors or operating directors of the OPO and 17 (29%) were department heads (procurement supervisors). One respondent did not answer the question. Thirty-four OPOs (60%) had a DSA that included only one state, 20 (35%) had a DSA covering two or three states, and 3 (5%) had DSAs extending over four to six states. One OPO did not provide the information. All of the questions were asked for each state the OPO served. Only 1% of the survey questions answered by the 23 multi-state OPOs had state-specific answers, and in such instance, the response for the larger area was used (data not shown). OPO’s policies/practices When asked about the OPO’s policies on organ procurement, 53% of the respondents answered that they follow the donor’s wish in all cases whereas 45% said that they followed the donor’s wishes in most cases. None chose either ‘‘follow family’s wishes in most cases’’ or ‘‘procure organs only if there is no objection from family.’’ To better characterize the OPOs’ actual practices, we asked what they would do when the registered organ donor and the family’s wishes on organ donation were discordant. Twelve of the 56 (21%) responding stated that they would inform the family of the donor’s wish to donate organs and proceed with procurement and an additional 33 of 56 respondents (59%) reported they would proceed with procurement even if they were unsuccessful at convincing the family members. Contrary to these FPA-compliant OPOs, 11 of the 56 respondents (20%) indicated they would not proceed with organ procurement unless they had the consent of the family. Ten of the 11 OPOs in the FPA-noncompliant group described their organ procurement policy as ‘‘follow donor’s wishes in most cases’’ even though in practice they previously stated that they ‘‘do not proceed with organ procurement unless the family consents.’’ 174
Nearly 97% (56 of 58) of the respondents stated they would proceed with organ procurement if the registered organ donor’s family could not be located. Half (50%) (27 of 54) of the OPOs did not have a written policy for handling family objections. Having a written policy was not statistically associated with honoring FPA (data not shown). Incidences/outcomes Most OPOs (89%) (51 of 57 respondents) estimated that the frequency of family objection to organ donation in cases of registered donors was 50% of the times, p ¼ 0.001. Thirty-seven OPOs reported no lawsuits by donors’ families; the remaining 21 did not provide a response. Factors influencing OPO’s implementation of FPA Virtually all (98%) (56 of 57) of OPOs reported that the decedent’s registered donor status would ‘‘very likely’’ influence the OPO’s decision to proceed with organ procurement. Most (93%) (53 of 57) OPOs indicated that state laws were either ‘‘very likely’’ or ‘‘somewhat likely’’ to influence their decision. Almost half of the respondents (49%) (28 of 57) considered the impact on the deceased’s family as ‘‘very likely’’ or ‘‘somewhat likely’’ to affect their decision. Less than half of the OPOs reported that the potential legal liability, impact on family, adverse publicity and the presumed effect on donation rates would have ‘‘very likely’’ or ‘‘somewhat likely’’ influenced their decision (Figure 1). Whereas both the OPOs that honor and those that do not honor FPA agreed that registered donor status and state laws were likely to influence their decision to procure organs, the groups differed on the importance of potential legal liability (34% vs. 73% [p ¼ 0.038]), adverse publicity (32% vs. 100% [p < 0.001]), impact on decedent’s family (36% vs. 91% [p ¼ 0.001]) and presumed effect on donation rates (18% vs. 64% [p ¼ 0.005]). FPA case scenarios When seven scenarios were presented, the OPOs differed in the likelihood of organ procurement (Table 1). American Journal of Transplantation 2014; 14: 172–177
A Survey of US OPOs on Implementation of First Person Authorization
Figure 1: Factors influencing practice of organ procurement.
OPO’s
All the FPA-compliant OPOs chose ‘‘very likely’’ or ‘‘somewhat likely’’ to proceed with organ procurement, whereas only 45% of OPOs in the FPA-noncompliant group chose ‘‘somewhat likely’’ when the registered donor had family who objected to donation (scenario A) (p < 0.001). The two groups also differed in the likelihood of procuring organs when the deceased was a registered donor and the family was unable to reach consensus (scenario C) (p ¼ 0.04) or when the deceased objected to donate and the family was either unavailable or unable to reach a decision (scenario D) (p ¼ 0.043). On the other hand, there was not a significant difference between likelihood of procuring organs when the deceased was registered and the family was not available (scenario B); or the case when the donor‘s wishes were unknown and the family was either unavailable or unable to reach a decision (scenario E) (p > 0.999 for scenario B, 0.301 for scenario E). Donor registry All OPOs except one (57 of 58, 98%) had online registries for donor registration. A minority of the donor registries (19 of 57 responses or 33%) has a mechanism to notify the donor’s family of the donor’s decision to become an organ donor at the time of donor registration.
Discussion Our study is the first to examine the implementation of FPA by OPOs since the policy has been enacted in all US jurisdictions. Wendler and Dickert (18) reported on a survey of OPOs in 1999 prior to the enactment of current FPA policies. They reported that 31% of OPOs followed the next-of-kin’s wishes in deciding whether to proceed with organ procurement when there was discordance between the donor and his or her family (18). They also found that 48% of OPOs ranked the impact on the deceased family as the most important factor affecting the OPO’s choice of standard consent practice whereas only 12% of OPOs selected the priority of the deceased’s wishes. We found that 80% of OPOs in the United States have accepted FPA as their procurement policy and that registered donor status and state laws were the most important factors in deciding to pursue organ procurement. However, some OPOs that have accepted the concept of FPA still attempt to obtain the next-of-kin’s blessing, although they will still procure organs even if family cannot be located or if objection persists. While not following the wishes of the registered organ donor is unethical (19,20), the practice of involving the family is permissible. Although
Table 1: Comparison of the likelihood of procuring organs between the FPA-compliant and FPA-noncompliant OPOs in the settings where the deceased and the family’s wishes differ or are not known Scenario A B C D E F G
Deceased
Family
% FPA NC OPOs likely to procure
% FPA C OPOs likely to procure
p-Values
Registered Registered Registered Object to donate Wish unknown Wish unknown Wish unknown
Objects to donation Unavailable Unable to reach decision Unavailable or unable to reach decision Unavailable or unable to reach decision Would like to donate Objects to donation
45% (5/11) 100% (11/11) 82% (9/11) 30% (3/10) 45% (5/11) 100% (11/11) 0% (0/11)
100% (42/42) 98% (41/42) 100% (42/42) 5% (2/42) 29% (12/42) 100% (42/42) 2% (1/42)
C
Copyright 2013 The American Society of Transplantation and the American Society of Transplant Surgeons doi: 10.1111/ajt.12519
When the Living and the Deceased Cannot Agree on Organ Donation: A Survey of US Organ Procurement Organizations (OPOs) W. J. Chon1,*, M. A. Josephson1, E. J. Gordon2, Y. T. Becker3, P. Witkowski3, D. J. Arwindekar1, A. Naik1, J. R. Thistlethwaite Jr.3, C. Liao4 and L. F. Ross3,5 1
Section of Nephrology, University of Chicago, Chicago, IL 2 Comprehensive Transplant Center, Northwestern University, Chicago, IL 3 Section of Transplant Surgery, University of Chicago, Chicago, IL 4 Section of Health Studies, University of Chicago, Chicago, IL 5 MacClean Center for Clinical Ethics, University of Chicago, Chicago, IL Corresponding author: W. James Chon, [email protected]
The legal concept of first person authorization (FPA) is based on the principle that a decision by a person with decision-making capacity should be respected even after he or she dies. Although the transplant community largely supports this concept, its implementation has not been universal. We conducted a web-based survey of all 58 Organ Procurement Organization (OPO) executive directors in the United States to assess OPOs’ procurement policies and practices in the context of family objections. All 58 respondents (100%) responded to our survey. All OPOs except one have an online donor registration website. Most OPOs (89%) (51 of 57 respondents) estimated that the frequency of family objecting to organ donation in cases of registered donors was 75%) they encounter family objections in the face of an FPA and (4) whether they move forward despite family objection; and if yes, whether their OPO had ever been subject to any litigation as a consequence. We calculated the FPA conversion rate based on the response to the following question, ‘‘In what percentage of FPA cases does your OPO move forward with donation?’’ and the following choices were given: 0–10%, 11–25%, 26–50%, 51–75% or >75%. Factors influencing the decision to procure organs were ascertained. Respondents were asked to rate six factors used in Wendler and Dickert’s survey (registered donor status, potential legal liability, adverse publicity, state laws, impact on deceased’s family, and presumed effect on donation rates) (18) as ‘‘very likely,’’ ‘‘somewhat likely,’’ ‘‘somewhat unlikely’’ or ‘‘very unlikely’’ to affect their decision in FPA situation. The survey also provided seven scenarios in which the deceased’s and the family’s wishes were discordant or unknown. For each scenario, a 4-point Likert scale was used to rate the likelihood of procuring organs (very likely, somewhat likely, somewhat unlikely or very unlikely).
Data collection The survey was administered by the AOPO in June 2012. An introductory email was sent to each OPO’s executive director explaining the purpose of the study, and a link to a commercial survey website, SurveyMonkey.com, was included in the email. Either the executive director or an experienced OPO employee of his/her choice was asked to complete the online survey. Anonymity of the respondents and the OPO was assured. A reminder email was sent to the OPO if no response was received within 2 weeks.
173
Chon et al Statistical analysis For statistical purposes, the categorical variables for the likelihood of organ procurement were grouped as ‘‘likely’’ or ‘‘unlikely’’ for data analysis in both FPA-compliant and FPA-noncompliant groups. The association between questions was assessed with the chi-squared or Fisher’s exact test depending on the number in each 2 2 table or responses. All statistical analyses were conducted using IBM SPSS Statistics (version 19; IBM Company, Chicago, IL); the level of significance was set at p < 0.05. If the OPO had a donation service area (DSA) that covered more than one state and if their responses to a question varied depending on the states they served, the answer for the largest area was used in data analysis.
Results Respondents/OPO DSA All 58 OPOs completed or partially completed the online questionnaire (100% response rate). Of the 58 respondents, 40 (69%) were either executive directors or operating directors of the OPO and 17 (29%) were department heads (procurement supervisors). One respondent did not answer the question. Thirty-four OPOs (60%) had a DSA that included only one state, 20 (35%) had a DSA covering two or three states, and 3 (5%) had DSAs extending over four to six states. One OPO did not provide the information. All of the questions were asked for each state the OPO served. Only 1% of the survey questions answered by the 23 multi-state OPOs had state-specific answers, and in such instance, the response for the larger area was used (data not shown). OPO’s policies/practices When asked about the OPO’s policies on organ procurement, 53% of the respondents answered that they follow the donor’s wish in all cases whereas 45% said that they followed the donor’s wishes in most cases. None chose either ‘‘follow family’s wishes in most cases’’ or ‘‘procure organs only if there is no objection from family.’’ To better characterize the OPOs’ actual practices, we asked what they would do when the registered organ donor and the family’s wishes on organ donation were discordant. Twelve of the 56 (21%) responding stated that they would inform the family of the donor’s wish to donate organs and proceed with procurement and an additional 33 of 56 respondents (59%) reported they would proceed with procurement even if they were unsuccessful at convincing the family members. Contrary to these FPA-compliant OPOs, 11 of the 56 respondents (20%) indicated they would not proceed with organ procurement unless they had the consent of the family. Ten of the 11 OPOs in the FPA-noncompliant group described their organ procurement policy as ‘‘follow donor’s wishes in most cases’’ even though in practice they previously stated that they ‘‘do not proceed with organ procurement unless the family consents.’’ 174
Nearly 97% (56 of 58) of the respondents stated they would proceed with organ procurement if the registered organ donor’s family could not be located. Half (50%) (27 of 54) of the OPOs did not have a written policy for handling family objections. Having a written policy was not statistically associated with honoring FPA (data not shown). Incidences/outcomes Most OPOs (89%) (51 of 57 respondents) estimated that the frequency of family objection to organ donation in cases of registered donors was 50% of the times, p ¼ 0.001. Thirty-seven OPOs reported no lawsuits by donors’ families; the remaining 21 did not provide a response. Factors influencing OPO’s implementation of FPA Virtually all (98%) (56 of 57) of OPOs reported that the decedent’s registered donor status would ‘‘very likely’’ influence the OPO’s decision to proceed with organ procurement. Most (93%) (53 of 57) OPOs indicated that state laws were either ‘‘very likely’’ or ‘‘somewhat likely’’ to influence their decision. Almost half of the respondents (49%) (28 of 57) considered the impact on the deceased’s family as ‘‘very likely’’ or ‘‘somewhat likely’’ to affect their decision. Less than half of the OPOs reported that the potential legal liability, impact on family, adverse publicity and the presumed effect on donation rates would have ‘‘very likely’’ or ‘‘somewhat likely’’ influenced their decision (Figure 1). Whereas both the OPOs that honor and those that do not honor FPA agreed that registered donor status and state laws were likely to influence their decision to procure organs, the groups differed on the importance of potential legal liability (34% vs. 73% [p ¼ 0.038]), adverse publicity (32% vs. 100% [p < 0.001]), impact on decedent’s family (36% vs. 91% [p ¼ 0.001]) and presumed effect on donation rates (18% vs. 64% [p ¼ 0.005]). FPA case scenarios When seven scenarios were presented, the OPOs differed in the likelihood of organ procurement (Table 1). American Journal of Transplantation 2014; 14: 172–177
A Survey of US OPOs on Implementation of First Person Authorization
Figure 1: Factors influencing practice of organ procurement.
OPO’s
All the FPA-compliant OPOs chose ‘‘very likely’’ or ‘‘somewhat likely’’ to proceed with organ procurement, whereas only 45% of OPOs in the FPA-noncompliant group chose ‘‘somewhat likely’’ when the registered donor had family who objected to donation (scenario A) (p < 0.001). The two groups also differed in the likelihood of procuring organs when the deceased was a registered donor and the family was unable to reach consensus (scenario C) (p ¼ 0.04) or when the deceased objected to donate and the family was either unavailable or unable to reach a decision (scenario D) (p ¼ 0.043). On the other hand, there was not a significant difference between likelihood of procuring organs when the deceased was registered and the family was not available (scenario B); or the case when the donor‘s wishes were unknown and the family was either unavailable or unable to reach a decision (scenario E) (p > 0.999 for scenario B, 0.301 for scenario E). Donor registry All OPOs except one (57 of 58, 98%) had online registries for donor registration. A minority of the donor registries (19 of 57 responses or 33%) has a mechanism to notify the donor’s family of the donor’s decision to become an organ donor at the time of donor registration.
Discussion Our study is the first to examine the implementation of FPA by OPOs since the policy has been enacted in all US jurisdictions. Wendler and Dickert (18) reported on a survey of OPOs in 1999 prior to the enactment of current FPA policies. They reported that 31% of OPOs followed the next-of-kin’s wishes in deciding whether to proceed with organ procurement when there was discordance between the donor and his or her family (18). They also found that 48% of OPOs ranked the impact on the deceased family as the most important factor affecting the OPO’s choice of standard consent practice whereas only 12% of OPOs selected the priority of the deceased’s wishes. We found that 80% of OPOs in the United States have accepted FPA as their procurement policy and that registered donor status and state laws were the most important factors in deciding to pursue organ procurement. However, some OPOs that have accepted the concept of FPA still attempt to obtain the next-of-kin’s blessing, although they will still procure organs even if family cannot be located or if objection persists. While not following the wishes of the registered organ donor is unethical (19,20), the practice of involving the family is permissible. Although
Table 1: Comparison of the likelihood of procuring organs between the FPA-compliant and FPA-noncompliant OPOs in the settings where the deceased and the family’s wishes differ or are not known Scenario A B C D E F G
Deceased
Family
% FPA NC OPOs likely to procure
% FPA C OPOs likely to procure
p-Values
Registered Registered Registered Object to donate Wish unknown Wish unknown Wish unknown
Objects to donation Unavailable Unable to reach decision Unavailable or unable to reach decision Unavailable or unable to reach decision Would like to donate Objects to donation
45% (5/11) 100% (11/11) 82% (9/11) 30% (3/10) 45% (5/11) 100% (11/11) 0% (0/11)
100% (42/42) 98% (41/42) 100% (42/42) 5% (2/42) 29% (12/42) 100% (42/42) 2% (1/42)
