Improving relatives’ consent to organ donationBMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b701 (Published 21 April 2009) Cite this as: BMJ 2009;338:b701
- Teresa J Shafer, executive vice president and chief operating officer
Obtaining consent from families for organ donation is the most important element of a successful transplant programme. In a recent large study of donor and non-donor families, 57% of families were predisposed to donate, 17% were unsure, and 25% were not in favour.1 The challenge is to secure consent from those people who are predisposed to donate, convert a substantial proportion of those who are unsure, and convert a smaller proportion of those who are initially not in favour. In the right circumstances this approach can achieve an 80% consent rate.
In the linked systematic review (doi:10.1136/bmj.b991), Simpkin and colleagues identify modifiable factors that influence relatives’ decisions to allow organ donation. They conclude that modifying the process of requesting consent may be the best way to increase organ donation rates in the United Kingdom.2 In a review published in the BMJ earlier this year, Rithalia and colleagues assess the effect of presumed consent legislation on organ donation rates and review data on attitudes towards presumed consent. Although many European countries have opted for presumed consent legislation in an effort to increase organ donation, the review shows that this legislation alone is unlikely to explain the variation in organ donation rates between countries, and multiple factors are probably at play because countries do not always follow their legislation strictly.3
Most factors involved in the consent process and outcome are modifiable. We now know much more about why families donate and factors that can increase consent rates.1 4 Best practices to increase organ donation have been accomplished through the recent US Department of Health Human Services Organ Donation Breakthrough Collaborative—organ donation increased by a cumulative 22.5% from October 2003 to October 2006.5 6 7
In the United States the organ procurement organisation (OPO) is responsible for obtaining consent. Research has unequivocally shown that OPO staff are the best people to discuss organ donation with families.1 4 In a large multivariate study of donor and non-donor families, one of the covariates most strongly associated with consent for donation was the time the family spent with OPO staff.1 4 OPO staff can spend the time needed with the family and proceed at the family’s pace.8 9
Requesting consent for donation is not simply “popping the question.” It is a dynamic process consisting of observation, collaboration, planning, and action that is based on family and hospital dynamics. OPO requesters should approach the family a second time if they are initially disinterested or decide not to donate, particularly if the first request was made by healthcare providers. Reapproach should also be considered when the initial approach was made by the OPO because families often alter their original position and consent to donate.1 4
Data that are shared routinely and openly between the OPO and the hospital leadership should be driven by the end result—how many families in a position to donate organs actually do so?
OPO staff are more knowledgeable about donation than hospital staff; this is important because families who are given more information about the donation process are more likely to donate.1 4 One approach is for healthcare professionals to limit their role to ensuring that OPO staff are called early in the process and to working under the direction of OPO staff to optimise the request for donation.1
Early and timely referral of potential donors to the OPO is essential—this allows the OPO to assess the donation request and prevents a rushed request for consent from families.10 Notifying the OPO shortly before or at the time the patient is being considered for brain death testing is too late.1 4 10 In the US, OPOs are usually notified within 30 minutes to one hour of a patient reaching a “clinical trigger” for referral, such as a score on the Glasgow coma scale of 4 or 5 or a plan to withdraw ventilator support. “Rapid early referral and linkage” of the family to the OPO was a key strategy for success in the Organ Donation Breakthrough Collaborative. The subsequent team “huddle” allows OPO staff and healthcare providers to discuss the situation and the role each team member will play in the consent approach (see box).
Modifiable factors influencing relatives’ decisions for consent to organ donation2
Before the donation: hospital or organ procurement organisation (OPO) donation system
Define success; adopt a philosophy. Success is consent for donation. The requestor’s job is to obtain consent. Assume that every family wants to donate, whatever their religion, race, or ethnicity
Set goals. Establish a strong culture of accountability for results: orient operations towards outcomes rather than processes. Try to improve the performance of the OPO and hospital
Establish clinical triggers for referrals and teach them to hospital staff
In-house coordinator programme. Create and maintain the visual presence of OPO staff in hospitals, especially high potential hospitals, to establish and maintain relationships with all people involved in donation
Track consent rates of all requesters and deploy effective staff accordingly
Train staff to ask at the right time and in the right way, and to reapproach families if needed
Donor case management: dynamic collaborative process
Refer the donor to the OPO early on and link the OPO to the family
Provide active leadership and management support to help staff overcome obstacles, plan reapproaches, deal with family needs and concerns, and ensure consistency and quality in their pursuit of donation
Team huddle. OPO staff and hospital staff should work as a team to develop a family communication plan that incorporates all members of the patient care team. Discuss roles. Re-huddle as necessary
Introduce OPO staff to the family. Work with hospital staff ahead of time so that they are comfortable introducing the OPO requester to the family. Welcome supportive hospital staff as request partners, but be aware that the OPO requester is trained to play the central role in discussing donation with the family
Build trust. The requester should spend as much time as necessary with the family. Increased time with OPO staff is strongly associated with increased consent rates. Building a relationship is crucial
Create a supportive environment in which to discuss organ donation with the family
Discussions about organ donation are more likely to be successful if they take place earlier rather than later
Explain brain death. It is not necessary to “decouple” the request from the declaration of death. It is an ethical requirement that families’ understand what brain death means, but it does not affect consent rates. Discussions of brain death should be simple, jargon-free, and make it clear that brain death means the patient has died
Communicate honestly. Consent to organ donation is higher when the family understands that the patient’s injuries are fatal. Honest communication about the patient’s condition is crucial
The OPO worker must advocate for organ donation. Positive messages and endorsement of organ donation, use of statistics to support the need for donation, and information that refutes the most common myths about donation must be conveyed to the family
Provide donation related information and engage all families in discussions about organ donation. Reassure families about disfigurement, funeral arrangements, and that no costs will be incurred. Actively listen to the families’ concerns
Discuss what the patient wanted. If the family is unsure, discuss the patient’s values and appeal to their knowledge about how organ donation can fulfil those values. Note how few people can actually donate when they die and that most people in developed countries support organ donation
Always reapproach families who have not met with an OPO worker. Consider reapproaching any family that has not had time to discuss donation with a knowledgeable requester
Having an OPO employee acting as an in-house coordinator in a single hospital makes it easier to integrate many of the modifiable factors listed in the box.11 The main finding of a large study of nine level 1 trauma centres was that having such a coordinator increased the conversion of potential organ donors to actual organ donors.9
Successful requesters act as advocates for people on the organ transplant waiting list, and they clearly convey the benefits of donation for those on the list to potential donor families. They are presumptive, not neutral. A presumptive approach is one in which the requester approaches the family with the assumption—the presumption—that they are going to donate and that the requester is there only to help them with the process of donation. Instead of giving the family an option to donate, the requester gives them the opportunity to donate, with the presumption that donation is a good thing, and that if given the chance to save a life most people will do so. Presumptivity, also known as dual advocacy, represents a subtle shift in the thought process—it puts the opportunity to donate in a positive light rather than being something the family is being forced to consider.12 Presumptive consent is perhaps the embodiment of the nuanced and varied presumed consent “practices” in Europe that Rithalia et al discuss in their review.3
Finally, nothing takes place in a vacuum. OPOs and hospitals should be jointly accountable and equally committed to obtaining high rates of consent to donation. The donation request is too important to delegate to those who are not expert, prepared, and focused on a successful outcome. A commitment to setting goals and measuring outcomes as well as the establishment of processes based on known best practices will produce results.
Cite this as: BMJ 2009;338:b701
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.