The field of deceased donation involves unique ethical challenges in addition to those that are shared with other areas of medicine.1-3 Historically, the tension between autonomy and nonmaleficence with duty to the society is one of the longest standing issues in organ donation. Over time, the field of donation medicine has expanded tremendously.4 This increased breadth and complexity has generated further sources for ethical reflection.
Donation physician (DP) specialists are generally intensive care doctors tasked with optimizing deceased donation practices within their healthcare environment. The DP role may include donor identification, direct care of potential donors, education of the public and of health care providers (HCPs), and administration of the decreased donation program.5 In their role, these physicians encounter a variety of ethical challenges on which they must make decisions and act. For example, as the expert in donation, the DP may be asked to provide guidance to other HCPs on difficult issues at the intersection of end-of-life care, death and organ donation. The decisions and actions of DPs decisions have the potential to both positively and negative impact best practices in deceased donation, and ultimately on deceased donation rates. For this reason, the ethical decision making practice of DPs warrants special attention.
Ethical guidelines are developed to support a systematic approach to complex ethical issues. In his editorial “The ethics of organ transplantation: how comprehensive the ethical framework should be?” Ghaly6 identifies the complexity of ethical issues relating to organ donation. He concludes that to be effective, an ethical guideline relating to donation medicine must carefully consider the breadth of issues encountered within the donation realm. This suggests that full examination of the ethical landscape of DP practice is necessary to guide the development of recommendations for ethical practice, and provides the rationale for performing this review.
This review seeks to fulfill 3 objectives:
- To identify, categorize and describe ethical issues that DPs may encounter and how these issues might be managed,
- To describe how DPs might enhance ethical practice in deceased donation based on existing recommendations and published experiences,
- To inform the development of an ethics guide for DPs.7
MATERIALS AND METHODS
The existing literature for ethics and the DP role is poorly developed and not amenable to systematic review or grading of evidence. Given the desire to explore and describe a complex issue, scoping review methodology was used in the creating of this review. A scoping review is broad examination that can help identify knowledge gaps, clarify key concepts and report on evidence that addresses and informs practice.8 The broad nature of donation medicine ethics combined with limited data on the DP role (which itself is highly variable) results in an inquiry that is well suited to this methodology.
Inclusion and exclusion criteria were defined a priori based on the objectives of the review.
- Population: given that the DP role is novel and variable,5 include publications describing ethical challenges relating to deceased donation encountered by all HCPs, and not just DPs.
- Concept: include publications focusing on ethical issues relating to deceased donation of organs or tissues.
- Context: to gain a global perspective, include publications from anywhere in the world.
- Publications focusing on living donation or other aspects of donation medicine
- Non–English language publications
The methodology for this review is similar to methodology for scoping reviews described elsewhere.8 Based on the objectives identified above, a search of indexed publications, nonindexed publications and websites was performed. Detailed search strategies are provided as supplemental digital content as Appendix 1, SDC,http://links.lww.com/TP/B409: Search Strategies. The titles and abstracts of records identified by the literature search were screened for relevant terms and themes. Full-text publications of included records were then assessed for eligibility using the inclusion and exclusion criteria. Of note, 1 reviewer (S.M.) completed the screening and full-text assessments for eligibility. Common themes were identified during the screening process. Bibliographies of full-text articles were also reviewed to identify other potential sources of information.
Later in the review process, a second search of indexed publications was performed to identify publications focusing on deceased donation in the setting of assisted suicide or euthanasia. The same approach of record screening and full-text assessment was used to identify eligible articles. Bibliographies of full-text articles were also reviewed to identify other potential sources of information.
A total of 127 publications were identified for inclusion by the review process. Figure 1 demonstrates the outcome of each of the 2 searches (n1 and n2 respectively) described in the methods section.
Seven recurring themes were identified during the first scanning process. These themes were reviewed and refined by the Canadian Blood Service Donation Physician Ethics Guide Planning Committee, with the final themes identified as follows:
- Communication with families,
- Interprofessional conflict,
- DP characteristics,
- Donation processes and care,
- Health care resource allocation,
- Research and education,
The first part of the discussion addresses the first objective of the review: to identify, categorize and describe ethical issues that DPs may encounter and how these issues might be managed. The themes identified by the scoping review are used to organize the discussion. Key ethical values for each theme are identified. Relevant findings from publications identified by the review process are described for each theme.
The second part of the discussion addresses the second objective: to describe how DPs might enhance ethical practice in deceased donation based on existing recommendations and published experiences.
Discussion Part 1: What are the ethical issues encountered by DPs? What are the recommendations for the management of these issues?
Theme 1: Communication With Families
Key Values: transparency, fiduciary duty, respect for autonomy, nonmaleficence.
Depending on their role, the DP may communicate with families at a number of points during the donation process, including the initial request for donation, obtaining consent for donation and during the care of the potential donor. An example of published recommendations for best practice when communicating with families includes those developed from the Canadian Blood Services workshop “End-of-life conversations with families of potential donors: Leading practices in offering the opportunity for donation.”9 These recommendations informed the creation of the following list of issues.
Issue 1: Disclosure of the DP’s Real/Perceived Conflict of Interest
Disclosure is use to promote trust in areas of medicine where there is conflict of interest, such as disclosure of sponsorship for research.10 The issue of conflict of interest is well described within the field of donation.11-13 The DP role is inherently conflicted in that the DP has duties to both the potential donor and the potential recipient.14 Although these conflicts of interest do not necessarily translate into compromises in decision making or actions, the obligation of the DP is disclosure. Existing recommendations on the management of conflict interest highlight the importance of disclosure.15,16
Issue 2: Obtaining Consent for Donation
Substitute decision makers are frequently involved in decision making for critically ill patients. In the case of deceased donation, this frequently includes providing consent for deceased donation, depending on the legal framework. Depending on the governing legislation, “consent” for deceased may represent authorization rather than traditional informed consent.17
Deceased donation must balance the needs of bereaved family members with need to respect the autonomy of the potential donor. Some authors have questioned whether consenting for donation constitutes a gift or a sacrifice by the deceased donors family.18 In cases where families are reluctant to provide consent for deceased donation, applying the principle of nonmaleficence to the family creates tension with the desire to respect the autonomy of the potential donor.19 This can be particularly highlighted when the potential donor has expressed a desire to donate, and the family is unwilling to provide consent for donation.
Ethical arguments exist for abandoning the requirement for consent from family proceeding with donation based on an individual’s previously expressed wish to donate.20 However, in most jurisdictions, the standard of care is for expressed consent from an appropriate substitute decision maker to proceed with donation.21
Issue 3: Cultural Competency: Understanding Different Cultural and Religious Perspectives on Dying, Death, and Donation
As part of end-of-life care, an ethical deceased donation process must incorporate unique cultural and religious perspectives. Shaw emphasizes how “[ethically] acceptable consent does not entail obtaining organs at the expense of cultural understanding.”22 Although an understanding of the donation process and trust in the health care team and institution may have a more significant influence on the decision to donate than religion alone, cultural diversity in beliefs at end of life are well described.23-26 For example, in some cultures, major decisions focus on the values of the family unit rather than those of the individual. In these cultures, involving multiple family members may enhance the decision making process.27,28 A physician who understands cultural and religious beliefs is positioned to explore the negotiable limits of those beliefs and to optimize the donation process to respect those beliefs.26 The importance of cultural competency is highlighted in the Trillium Gift of Life Network code of ethics for DPs.16
Issue 4: Effective Versus Coercive Requesting
In their review of consent for organ donation, Vincent and Logan29 summarize modifiable factors that influence consent for organ donation. These, and other modifiable factors were explored during the 2014 Canadian Blood Services forum on leading practices in offering the opportunity for donation. For example, a well-planned approach and provision of sufficient information to the family were advised as best practices.9
Although this approach could be construed as an attempt to manipulate the autonomous decision making process, it is difficult to see how the provision of information required for authorization or consent for deceased donation could be obtained without fulfilling these recommendations.
Jakubowska-Winecka30 examines the request process from a psychological perspective. She highlights the potential harms to both families (loss of trust) and HCPs (avoidance of further involvement in deceased donation) when coercive approaches are used. She highlights the importance of recognizing that the desired outcome of an effective request is an informed decision, rather than a positive response.
The Trillium Gift of Life Network (TGLN) code of ethics for DPs states, “…every reasonable effort should be made to ascertain a registered consent decision and authorize the wishes of the patient, patient’s family members or substitute decision makers.”16 This stance advocates for the use of optimal requesting processes by the DP.
Incorporating a potential Donor’s Desire to Donate
Existing practice guidelines state that discussion of an expressed wish to donate is part of the optimal requesting process.9,31,32 These recommendations cite evidence that information has been reported to be helpful for the majority of families in addition to evidence that it may also positively influence the decision to consent for deceased donation. In their policy on organ and tissue donation and transplantation, the Canadian Medical Association describes the physician’s obligation to their patient as having primacy over the family in this setting, and suggests that when the patient has previously consented to donation, the family should be encouraged to respect these wishes. Legal analysis published in Canada after the completion of this review suggests that family override of previously expressed consent could be interpreted as illegal.33
In some circumstances, families may initially decline the offer to donate. If there was a previously expressed wish to donate by the potential donor, this situation may create tension between respect for the autonomy of the potential donor and nonmaleficence towards the family. In addition, there may be tension between beneficence and nonmaleficence directed toward the family given that there is evidence that the families of nondonors are more likely to regret their decision.9 The question that follows is the appropriateness of repeating the request for deceased donation.
Internationally, recommendations for management of this issue are somewhat varied. The UK guidelines suggest that it is appropriate to explore a family’s reasons for declining.32 The Australian guidelines do not specifically address the situation where a family declines, but does recognize that there are situations where pursuing consent for donation may be harmful to families and ought to be abandoned.34 The Spanish approach advises the use of “rejection reversal techniques” which are to be pursued until there are signs from the family that further discussion is not beneficial.35 The Canadian recommendations are that re-asks are acceptable when there is new information or to correct misinformation.9
Management of Withdrawal of Consent
No specific recommendations around the management of withdrawal of consent were identified in the literature. Related issues that have been addressed in existing guidelines include re-asks and management of refusal to donate.
In the case of refusal to participate in deceased donation, a recommended approach is provision of usual palliative care along with usual support for the family.9,34 A discussion or evaluation of whether this usual care is equivalent to the care provided for potential donors was not identified in the literature.
Theme 2: Interprofessional Conflict
Key Values: transparency, respect for autonomy.
DPs are donation advocates. For some HCPs, this may appear to be at odds with patient care and can lead to interprofessional conflicts. DPs must be respectful of their colleague’s perspectives. Because a primary role of the DP is to ensure that potential donors are given the opportunity to donate, the DP must be prepared to address differing perspectives of other HCPs that may present a barrier to donation.
Issue 1: Conscientious Objection
In medicine, conscientious objection is defined as “the notion that a HCP can abstain from offering certain types of medical care with which he/she does not personally agree.”36 As an example, in the donation realm, conscientious objection is well described in donation after circulatory death (DCD) due to ethical concerns with the criteria used to determine death and the potential for influence on EOL decisions.37,38 There are several aspects of the deceased donation process that may prompt conscientious objection. These are explored further in subsequent sections.
Though controversial, conscientious objection by HCPs is generally supported as long as the patient is not denied access to the procedure or care. This is generally achieved by referral to another HCP or facility that is willing to provide the care in question. However, in circumstances where this cannot be achieved, duty of care cannot be neglected.39 As a consultant, the DP may have a role in resolution of conscientious objection by other HCPs.
Issue 2: Goals of Care at the Intersection of End-of-Life Care and Organ and Tissue Donation
Timing of Referral of Potential Donors
The timing of referral for consideration of deceased donation may raise concerns, particularly in jurisdictions without mandatory deceased donation request/referral laws.40 This approach can be perceived as prioritizing the needs of potential recipients over that of potential donors.41 The counterargument to this relies on support of deceased donation by the majority of the general public. Failure to offer the opportunity for donation adversely impacts this majority group, by failing to recognize their wishes. In addition, individuals on the transplant waiting list are adversely affected when opportunities to donate are missed.
Effects of Universal Requesting on Bereaved Families
There is evidence that HCPs may be overly concerned about the impact of donation requests on bereaved families. The families of potential donors who were surveyed by Merchant et al42 indicated that they did not feel influenced by HCPs regarding the decision to donate, regardless of their ultimate decision to donate. These authors also demonstrated that donation had a positive effect on the bereavement process. They concluded that their findings supported the approach of universal requesting.
Perceptions of Other HCPs on the Role of the DP in End-of-Life Care
The integration of the critical care team with the deceased donation program has been identified as a key concern.9 The significance of this concern is supported by the presence of literature describing potential role conflict between HCPs with a patient care role and those with donation-focused role. Several types of conflict are identified.
Some HCPs may feel that the DP is not the best person to communicate with the family regarding donation. Noah and Morgan describe conflict resulting from the introduction of a policy that effectively removed bedside nurses from the requesting process that they had been traditionally involved in. These nurses felt that their relationship with patients and families put them in the optimal position to discuss donation with families and did not trust individuals from the organ procurement organization to do so. The result of this change was a reduction in deceased donation. As representatives of donation medicine, the DP could find themselves in a similar position. In the case described in the article, the routine implementation of a team huddle to discuss roles and responsibilities effectively resolved the conflict and improved donation rates. Participants in the huddle included bedside nurses and organ procurement organization staff.43
Other HCPs have similar concerns with the role of physicians in end-of-life care that involves donation. Landau describes a social worker’s perspective that the role of the physician is “… to obtain the family’s consent as fast as possible to transplant the donated organ to the recipient”. The physician’s role is described as “outcome-focused” whereas the social worker role is “[to] promote clients’ self-determination and process orientation.” This article addresses a role conflict between social workers and physicians in general. Although it did not specifically address the role of the DP, the concerns raised highlight the importance of having a clearly defined DP role.44
Physicians who provide care to critically ill patients may be uncomfortable with the role of the DP. In the US, controversy arose from the perception that federal regulations for mandatory requesting excluded physicians from the process. In fact, the only requirement was that the HCP involved with requesting had to have specific training in donation.45 Some critical care physicians in the United Kingdom and Australia also identified concerns with the role of the DP.46
The counterargument is that DPs (and their representatives) may be better suited to discuss donation with families, particularly due to their specific skills and knowledge of donation. This is supported by evidence that the training of physicians and HCPs in deceased donation and consent discussions is widely variable, and that training is associated with increased donation rates.14
Issue 3: Ethnocultural Difference Between HCPs
The influence of individual culture and religion on HCP support for donation is unclear. A study of Christian and Muslim HCPs did not demonstrate a relationship between religion and support for donation, although there were a significant number of HCPs in each group that expressed concern regarding deceased donation.47 Two Turkish studies have suggested that lack of physician education, rather than religion, predicted reduced support for donation.48,49 Conversely, an Iranian study linked a lack of support for donation by HCPs to a specific ethno-cultural background.50 When present, reluctance to participate in donation based on religious or cultural beliefs constitutes conscientious objection, which has been addressed in a previous section.
Theme 3: DP Characteristics
Key Values: respect for autonomy, duty to society, fiduciary duty.
As specialists, DPs must possess additional skills related to donation. Beyond clinical knowledge, the DP requires skills in communication, education, mediation and research. The practice of the DP is influenced by internal and external factors. Internal factors include personal experience and religious as well as ethno-cultural background. External factors include holding a second position (usually as an intensive care unit [ICU] physician) caring for the potential transplant recipients with end stage organ failure in the ICU while at the same time care for critically ill patients, including those that are transitioning to end-of-life care. To ensure that their practice adheres to the values and principles of the DP role, the DP must be aware of how internal and external factors influence their practice as a DP.
Issue 1: Influence of Personal Characteristics and Biases on DP Practice Pattern
The practice of the DP generally reflects the values and principles of deceased donation. Situations may arise where the personal values of the DP are in conflict with those associated with deceased donation. This may lead to moral distress resulting in conscientious objection.
Conflict may also arise between the personal values of the DP and those of the donation organization that is, in some cases, their employer. This type of conflict is not addressed in existing guidelines.
Level of experience appears to have varied effects on how critical care physicians perceive deceased donation. Some physicians with more experience report having more concerns with conflict of interest, whereas others report that experience has increased their comfort with the complexities of deceased donation.51,52 It is unknown how a level of experience will affect the perceptions of DPs.
Issue 2: Balancing the Role of Most Responsible Physician and DP While Working in the Same Unit
It has been suggested that the efforts of transplant professionals are exclusively transplant oriented.11-13 Is the DP included in this group? Certainly, a DP is a donation advocate. However, another key aspect of the DP role is end-of-life care for potential donors. Given the potential for ethical tension between donation and end-of-life care, the DP inevitably faces issues with conflict of interest. Further adding to the complexity of the situation is the fact the many DPs also work in specialities that involve both end-of-life decision making in potential donors and caring for potential recipients.
The dual role exists in various situations. For example, there may a situation where a physician is acting as the DP and the most responsible physician (MRP) of the potential donor or recipient at the same time. Alternatively, the physician may have of role of MRP at one point in time, and the DP at another. Regardless of the configuration there is a concern for real and potential conflict of interest.
Concern with the dual role of HCPs involved in deceased donation is a focus of several published critiques of the deceased donation process.53-56 These are counterbalanced by other publications that have advocated for the dual role. For example, when a new US law appeared to limit the role of physicians in discussing deceased donation with families, the American Medical Association advocated for the role of critical physicians in the deceased donation process.45 Although the group acknowledged the issue of conflict of interest, they felt strongly that adequately trained physicians who were acting as MRP could discuss deceased donation with patients and families.
Other than addressing the issue of disclosure, there no published guidelines that address the dual role of the DP. Internationally, most programs demand separation between the roles of donation team members in the provision of end-of-life care in the ICU.5
Issue 3: Role Evaluation
Key stakeholders in deceased donation programs include the potential donor, donor families, potential recipients and general public. Outcome measurements need to include measures that reflect the needs of these stakeholders, and must take into consideration the role of the DP within the larger deceased donation system. Although performance evaluation is acknowledged to be an important part of ensuring that the DP fulfills their mandate as a donation champions, there is limited existing guidance on how best to evaluate DP performance.
Measurement of a successful deceased donation program must take into account a number of considerations. Donation rates alone may be an inadequate reflection of the success of a deceased donation program. As Simpson points out, factors such as the availability of intensive care and the approach to end-of-life decision making in a predominantly Catholic country likely influence the high rates of deceased donation in Spain.57 These factors are largely independent of the deceased donation program (with the exception of specially funded “donor beds”), but have a significant impact on the overall deceased donation rate. Because DPs operate within a deceased donation program, the same limitations apply to using donation rates to evaluate the performance of a DP program.
If the goal of a deceased donation program is to ensure that donation is a routine option within end-of-life care, metrics for performance ought to assess this outcome. In the United Kingdom, the UK Donation Ethics Committee (UKDEC) was established to address obstacles in the donation process that prevent the donation from being a routine part of end-of-life care. The metrics for success of this committee include minimized “missed opportunities” for donation, optimized consent for deceased donation, family satisfaction and optimized actualization of donation.57 If the goal of a DP program is similar, these metrics might a useful way to evaluate the success of the program.
Two ethical approaches have been applied to the request for deceased donation. The first, utilitarian rationalism identifies actualized donation as the optimal outcome. In this case, the ideal outcome is based on benefit to organ and tissue transplant recipients. Streat58 argues against this approach, suggesting that the second approach, moral neutrality, is more appropriate. Moral neutrality views the request for donation as an essential component of end-of-life care that benefits the dying patient. From the perspective of moral neutrality, the optimal outcome of the request is an informed decision that may or may not include a decision to donate. For programs where the DP is involved in requesting, assessment of family satisfaction with the requesting process may provide useful information about DP performance.
The Canadian consultation on DPs identified the need for a varied approach to evaluation depending on the role of the DP. Some participants in the consultation identified concerns with using performance targets such as referral rate, consent rate, donation rate and number of organs/tissues transplanted to evaluate the performance of DPs. Other potential areas for evaluation identified in the consultation included quality of the consent process, family satisfaction rates and conversion rates. Concerns were raised over the use of quantitative rather than qualitative performance targets.59 Funding mechanisms should support giving patients an opportunity to donate without creating incentives to increase the number of organs donated through undue pressure. Within Canada, TGLN uses a self-reporting approach to evaluation. They are in the process of developing additional tools for the evaluation of DPs.
In Australia, key outcomes have been identified for DPs. Performance measures have been identified for each outcome. For example, “Support the collection and validation or donation-related date” is a key outcome, with a corresponding performance measure of “[Ensure] reporting of required donation data is complete and accurate.”60
Issue 4: Organization Affiliations
The DP practices in an environment that represents a convergence of critical care, end-of-life care and transplantation medicine. As such, the DP may have a relationship with organizations in any of these fields. Whether these relationships produce a conflict of interest is not described in the literature. No guidelines were identified that address this issue.
Theme 4: Donation Processes and Care
Key values: transparency, integrity, respect for respect for autonomy, duty to society.
DPs have variable levels of involved with the care of deceased donors. In some cases, they are present at the bedside, while in others their role is administrative. Despite the existence of various guidelines for end-of-care and deceased donation, DP, as the local expert, may still be faced with concerns regarding the deceased donation process.
There are several aspects of the deceased donation clinical process that can generate ethical issues. They are organized here into general processes (apply to all types of donation), donation after neurologic determination of death (NDD) specific and DCD specific. Besides having expert knowledge of the processes of NDD and DCD, the DP must also be aware of unique ethical concerns and conflicts that arise from these practices and be prepared to address them.
Issue 1: Identification and Referral of Potential Donors
As previously discussed, the timing of referral in regions without mandatory deceased donation request and/or referral laws may lead to concern. This approach can be perceived as prioritizing the needs of potential recipients over that of potential donors.40,41 It has been suggested that screening for potential donors and required referral programs undermine the trust between patients and families and the medical system.61 Clarification of how referral occurs for patients and families may prevent this from occurring.
Issue 2: Providing Medically Nonbeneficial Care for Potential Donors
Preserving the Potential to Donate
Some patients sustain such severe injuries such that any intervention is considered nonbeneficial from a life-saving perspective. However, interventions may sustain life or organ function to preserve the ability to donate. Bendorf et al62 describe how efforts to optimize the diagnosis of brain death (and thus the potential from NDD) by providing aggressive life support at the end-of-life rather than palliation create tension between the intimacy of end-of-life care of the individual and the society’s needs for transplantable organs.
In the case of organ donation, interventions aiming to optimize the potential for donation that do not provide medical benefit to the donor could be perceived as unethical. Venkat et al63 suggest that this may contribute to physician discomfort with the deceased donation process in the emergency department (ED) setting. Some authors have argued that efforts aimed solely at organ preservation ought to be carried out by the MRP only if there is a known desire to donate.64
Littlejohns et al65 examined the issue of attempting medical stabilization for the purpose of preserving the option to donate when the wishes of the individual are not known. Their view is that there is general acceptance that care decisions are to be made in the patient’s best interests, and that best interests include not only physical health but also social, cultural and religious interests. The authors consider the desire to participate in deceased donation to be part of the latter interests. This argument essentially deems interventions aimed at optimizing donation potential nonfutile based on the protection of the individual’s interests through maintaining the opportunity to donate.
The underlying assumption of this approach is that the patient’s care will be adapted to reflect the patient’s wishes as soon as they can be determined. This argument accepts that there will be some harm to those that would not want to donate, but this is mirrored by, and felt to be outweighed by, the harm that would be done to those that were denied the opportunity to donate. This argument presumes widespread public support of deceased donation programs.
Elective “Nontherapeutic” Ventilation
In cases where no other benefit is offered from mechanical ventilation other than preserving the potential to donate, the term nontherapeutic ventilation is used. There are 2 distinct scenarios: the continuation of mechanical ventilation that has already been deployed as part of a treatment plan, and the initiation of mechanical ventilation for the purposes of organ donation. DPs may be asked to become involved in such cases.
Browne et al discuss the ethical arguments for and against the provision of nontherapeutic ventilation (for the purposes of facilitating organ donation).66 The arguments for include:
- Consent to be a donor includes consent for procedures necessary to be a donor, including mechanical ventilation. This consent comes from the patient’s family, who is best positioned to make decisions in the best interest facilitation of the patient.
- Provision of ventilation facilitates organ donation, which saves lives. It may also ease the burden of loss for the family.
The arguments against include:
- Provision of nontherapeutic ventilation could lead to survival in a debilitated condition, rather than brain death, that would not be acceptable to the patient.
- Providing nontherapeutic ventilation places HCPs in conflicting position whereby the goal of care is to preserve organs rather than to minimize the patient’s brain injury. This concern is similar to that of premortem interventions such as administration of systemic heparin in potential DCD cases.
- Overall donation rates may drop if individuals are deterred from donation because they perceive that physicians are prioritizing donation over preserving life.
In their analysis, the authors argue that third party consent for nontherapeutic ventilation is inadequate. Their conclusion is that, absent explicit consent from the patient, nontherapeutic ventilation is not permissible.
Kluge refutes this argument by pointing out that consent requires that the decision maker be given all information that the objective reasonable person in the patient’s position would want to know.67 He further argues that because the goal of nonbeneficial ventilation is organ donation, the consequences would be acceptable for someone who wanted to be a donor. Finally, he questions why consent for nontherapeutic ventilation would be treated any differently than consent for other aspects of the donation process.
In a pro-con debate published in 2002, Parker and Shemie,68 respectively, present arguments in opposition of and in favour of nontherapeutic ventilation. In addition to arguments similar to those of Browne et al, Parker identifies issues with providing a nontherapeutic intervention that ties up a scarce resource (eg, ICU bed). Shemie refutes this by offering examples of other situations where nontherapeutic ventilation is used (eg, to buy time to resolve conflict with families surrounding goals of care), and highlights the potential benefits of donation to society through increased rates of organ transplantation.
In the United Kingdom, nontherapeutic interventions in the care of the potential donors are supported. The rationale for this support is that any processes that facilitate actualization of the donation are in the best interests of the potential donor. In this case, “best interests” includes benefit beyond medical benefit. In this view, initiation of intubation and mechanical ventilation for the exclusive purpose of facilitating donation would be acceptable in someone who had previously expressed a desire to donate.69 As the question of initiating mechanical ventilation for the purposes of preserving the opportunity for deceased donation remains controversial, the DP may be asked to provide guidance in this regard.
DCD Specific Processes
Issue 1: Decision to Withdraw Life-Sustaining Therapy
In the case of devastating brain injury, the decision involves a discussion of the expected outcome from the patient’s injury with the family. Prognostication after severe neurologic injury is challenging, particularly in younger patients.70 Canadian researchers have demonstrated significant variability in the timing of withdrawal of life sustaining therapy in patients with traumatic brain injury.71 Based on their findings, these authors raised a concern that, in some cases, the timing of withdrawal decisions may be occurring too early for appropriate neurologic prognostication.
Decoupling—separating the discussion of grave prognosis or the determination of death from conversations about donation—is generally accepted as standard to approach to reduce the perception of conflict of interest.9 Guidelines for DCD recommend that the decision to proceed with DCD must be preceded by a consensual decision to withdraw life-sustaining therapy.34,72 There is also a recommendation against the involvement anyone from the donation team in this part of the discussion.73 The DP role is not specifically addressed in these guidelines.
Requests for DCD by a Conscious Patient
Epker et al74 conducted an evaluation of the ethical feasibility of obtaining consent from a conscious, life-support dependant patient who has requested withdrawal of life-sustaining therapy and palliation. They point out that the ideal situation for deciding to donate is an autonomous choice made by the individual. Surrogate decision making is only employed because autonomous decision making is not possible in comatose patients. A patient who can autonomously request withdrawal of life sustaining therapy would certainly be able to make an autonomous decision about organ donation. One concern presented by the authors is the need for the separation of the decision to withdraw life-sustaining therapy from the decision to donate. This parallels the recommended approach when surrogate decision makers are being used.
Assisted Suicide, Euthanasia, and DCD
The potential for organ donation after assisted suicide or euthanasia warrants consideration. In Belgium, where euthanasia is legal, authors reported 4 cases of successful DCD after euthanasia. In the cases described, the patient, rather than a substitute decision maker, made all decisions regarding euthanasia and deceased donation. In their analysis, the authors focused on the importance of separating the euthanasia request from the donation process.75 The need for separation between the decision to end life and the decision to donate was also highlighted by authors who evaluated the possibility of DCD donation after assisted suicide in Switzerland as a means to improved deceased donation rates.76 In both articles, HCP opposition to euthanasia and/or assisted suicide was identified as a potential barrier for deceased donation in these circumstances.
Issue 2: Process of WLST and Actualization of Donation
Provision of End-of-Life Care for Potential DCD Donors
The DP may be involved in end-of-care for a potential DCD donor. The delivery of end-of-life care in this situation has the potential to generate conflict. For example, a 2005 study of American neurointensivists revealed contrasting views on the administration of sedation and analgesics to patients during withdrawal life-sustaining therapy before potential donation (36% for; 58% against; 6% neutral).77 This demonstrates the presence of discomfort with the provision of palliative care modalities to the potential DCD donor, despite guidelines that prioritize optimal palliative care and provide an ethical rationale for providing sedation and analgesia to these patients in this setting.73
The cause for this discomfort may stem from concern that the provision of opioids and sedatives might adversely affect the actualization of donation.78 In this case, the potential for donation is prioritized over palliative care at end of life. This approach is at odds with the guidelines for palliative care in the DCD setting.73
Alternatively, there is also evidence of concern that opioids and sedatives could be perceived by others as being used to hasten death in potential DCD donors.78 A 2014 study demonstrated that provision of comfort care as part of a potential DCD donor management protocol did not affect the duration of survival in potential DCD donors.79 This supports the use of palliative care protocols in potential DCD donors.
Managing Expectations for Successful Donation
The time-dependant nature of DCD imposes a deadline by which death must occur. The presence of the deadline means that the HCPs involved may feel pressure during period after withdrawal of life-sustaining therapy has occurred. The pressure may come from the desire to fulfill the wishes of the potential donor and family, as well as awareness that a number of hospital resources and personnel have been deployed and are on standby to permit actualization of donation once death has occurred.
Presenting families with all of the possible outcomes before withdrawal of life sustaining therapy, including an inability to carry out donation if death does not occur with the predetermined period of time has been suggested as an approach to partly reduce this pressure.9
The dead donor rule continues to serve as the moral and legal foundation of deceased donation practices. Existing guidelines for the determination of circulatory death are generally consistent in that death is defined in accordance with accepted medical practice and determined by a physician not involved in the care of the transplant recipient.73,80,81
The US Uniform Determination of Death Act requires loss of whole brain or cardiorespiratory function is irreversible. Several authors have published opinions stating their objections with procedures for the declaration of death in DCD donors.78,82-85 Many of these authors question how much time must pass before circulatory arrest is theoretically irreversible, if attempts at resuscitation are provided. However, in the setting of controlled DCD, a decision to forego life sustaining interventions and CPR has been made. Therefore, the permanence concept, inferring “will not reverse” as opposed to “cannot reverse,” has been accepted in the United States, United Kingdom, Canada, and Australia.73,86-88
The role of the DP in the determination of death varies depending on concurrent responsibilities as well as regional guidelines and policies. In their review, Michael and Jesus suggest that the determination of death for the purposes of DCD should be made by the MRP, not the DP due to concerns that the DP is part of the organ procurement team.20 In keeping with this view, several national DCD recommendations state that 2 physicians must make the determination of death. These physicians must not have “any association with a proposed transplant recipient that might influence their judgement.”73 There are no specific recommendations on the role of the DP in the determination of death.
From a practical perspective, programs with a smaller number of available physicians may run into issues with the DCD process if the DP is not involved. In addition, the experience of DP may help ensure that the determination of the death is carried out accurately, particularly in less experienced centers. Van Norman suggests that the determination of death must be made by a physician with expertise in end-of-life care and donation after cardiac death.89 This seems to suggest a role for the DP in the declaration of death.
Donation After NDD-Specific Processes
Issue 1: NDD
Despite general acceptance of the concept of brain death, from a societal and legal perspective, the equation of brain death with human death continues to be questioned by some members of the medical community.90,91 In addition, there are a number of misconceptions and misunderstanding related to brain death. For example, members of the anaesthesia community have debated the need for sedation and analgesia for NDD donors based on concerns that the donor might experience pain during the procurement process.90-92 HCPs uncomfortable with the diagnosis of brain death, or with lack of understanding, may present a challenge to the DP in their role of facilitating the donation process.
Evidence-based guidelines for NDD were developed after the demonstration of variation in adherence to brain death recommendations.93,94 These guidelines outline minimal criteria based on clinical findings, with ancillary tests recommended when the clinical assessment cannot be completed. Similar guidelines are used in NDD in countries around the world, suggesting general acceptance of this approach.86,95,96
Despite this, a Swedish study demonstrated that less than 50% of HCPs trusted clinical determination of brain death without ancillary testing.97 In another example, a qualitative study of Brazilian critical care physicians demonstrated that some physicians struggled with the notion that their patient, the deceased potential donor can no longer benefit from care, but can be of benefit to others. This is contrary to what these physicians felt was the primary objective of their practice – preserving life of their patient. The author concluded that this conflict may lead to reluctance to participate in the deceased donation process.52 These findings suggest that it is quite possible that the DP may encounter HCPs that are uncomfortable with the use of evidence-based guidelines for NDD.
The role of the DP in NDD requires clarification as concerns relating to the involvement of personnel associated with donation process in the declaration of death have been identified.98 Arguments against and for the involvement of the DP in the determination of death are described previously in the section “DCD Specific Processes” under the heading “Death Determination and the Definition of Death.”
Theme 5: Health Care Resource Allocation
Key values: transparency, duty to society, fiduciary duty.
In some cases, the DP may be involved in organizational planning about resource use for the care of potential donors. As an advocate of deceased donation, the DP may find themselves in conflict with other programs that are competing for the use of the same resources. A similar conflict may occur at the bedside when decisions about offering deceased donation are being made in the setting of limited ICU or operating room resources.
The availability of critical care resources has been linked with the frequency of deceased donation. For example, the high number of critical care beds in Spain has been linked to the country’s high deceased donation rate.57 Scarcity of ICU beds might result in earlier decisions to withdraw life-sustaining therapy without consideration for the option of deceased donation. Scarcity of ICU beds may also promote DCD over NDD, as the latter may require long periods of support before death and donation.19
The generally positive outcomes of transplantation compared to outcomes from similarly expensive treatments for other severe diseases associated with poor outcome has been used to justify prioritization of deceased donation.99 However, this economic argument may not be acceptable to other HCPs. For example, a study of North American critical care nurses and physicians showed that almost half would adhere to the “rule of rescue” and allocate a bed to a gravely ill patient with a low chance of survival rather than to a potential deceased donor.100
The accountability for reasonableness framework developed by Daniels and Sabin101 was developed to guide priority setting in health care. According to the framework, an ethical priority setting decision requires:
- Publicity: rationales for priority setting are publicly accessible.
- Relevance: rationales are considered relevant to priority setting by fair minded people.
- Appeals: there is avenue for appealing these decisions and their rationales.
- Enforcement: there exists a means of ensuring the first 3 conditions are met.102
An application of the framework to priority setting involving the care of potential deceased donors was not identified in the literature. However, a published analysis demonstrated that the framework could be successfully applied to the critical care admission decision making process in a transplant center.103
Theme 6: Research and Education
Key values: duty to society, transparency, integrity, respect for autonomy.
DPs can be expected to be involved in donation-related research. As with any field of medicine, an expert and leader in a field must look critically at the work that they do to ensure performance of best practice. Research in donation medicine must consider the special characteristics of the potential subjects. Bereaved families, potential donors and actualized donors all have unique characteristics that require special consideration when research is being performed. Finally, sources of funding for donation-related research must be evaluated with respect to their potential to influence the research process.
Issue 1: Approaching Families of Deceased Donors and Potential Donors to Participate in Research
As previously described, approaching families to discuss deceased donation without their specific consent is considered acceptable based on general societal support of donation.42 It is unclear whether this same justification applies to requests to participate in donation-related research. Indeed, the families of donors and potential donors could be considered “vulnerable” research participants. Although no large studies describing the impact of asking the families of potential donors about participating in donation-related research were identified, a pilot project in studying the dying process in potential donors resulted in an 87% consent rate.104
Weiss describes additional safeguards for donation-related research.105 She suggests that research protocols:
- Have goals, in the view of the public, that are important enough to justify the risks that are taken to achieve them;
- Are sensitive in their approach to families;
- Have minimized risks to potential research participants and their families;
- Confer some benefit to research participants;
- Are acceptable to the community in general and to members to the specific research population in particular.
Issue 2: Consent for Participation in Research
International and national guidelines have been developed that set out requirements for consent for participation in human research. Recommendations regarding consent for research involving deceased donors are variably present. For example, the issue is specifically addressed in the English framework, which requires that consent be obtained before death, but is not addressed in the Canadian Tri-Council Policy Statement.106-108
Understanding of risk is a pillar of informed consent to research participation. In some circumstances, the risk of research is so minimal that the requirement of informed consent is waived—so-called minimal risk research. Whether research involving deceased donors constitutes minimal risk research is unclear, because the concept of risk in this setting differs from research on living patients. For example, because research subjects are deceased, they cannot directly incur harm. Recommendations for research on the recently dead describe risk in terms of potential harm to survivors and protecting the dignity of the recently deceased.109
In the United Kingdom, the UKDEC group conducted a workshop on ethics in donation-related research, resulting in a position statement with recommendations for donor and recipient consent to research. Consistent with the English research governance framework, they suggested that donor consent must occur before removal of organs or tissues and should consist, at minimum, of blanket consent for research on the organ or tissue regardless of whether or not transplantation actually takes place. Finally, they concluded that research on potential donors before the declaration of death is unlawful in the United Kingdom.110
Issue 3: Impact of Research on Actualization of Donation Goals
Given that clinical equipoise is a requirement for ethical research, it follows that participation in donation-related research may or may not have a positive impact on the actualization of donation. Although a discussion of this specific issue was not identified in the literature, a discussion of potential outcomes, as is standard for informed consent to participation in human research, addresses this issue.
Issue 4: Funding for Donation Research
Financial conflict of interest is a concern for all types of research. For example, sponsorship by the pharmaceutical industry has been shown to produce publication bias and inappropriate selection of comparator.111 There are various potential sources of funding for donation related research that could result in a real or perceived conflict of interest.
Regardless of the type of conflict (real or perceived), conflict of interest has the potential to cause harm through loss of trust. Trust is an integral value that is required to ensure that public participation in deceased donation continues.112 Thus, addressing conflict of interest in donation research is of significant importance.
Funding from the for-profit transplant industry has potential to generate conflict of interest. Research funding from organizations that promote and advocate for transplantation but do not profit from it (eg, organ donation organizations) can also produce a conflict of interest.
There are no existing guidelines that specifically address management of funding-related conflict of interest in deceased donation research. General human research guidelines suggest disclosure as means to address this type of conflict.15,106 More specifically, the Canadian guidelines on human research advise the REB to determine the magnitude of harm that is likely to result from a real or perceived funding-related conflict of interest. The need for this assessment further complicates the role of the REB in an area of research that is known to pose a challenge due to its unique features.72
There is recognized role for formal education on deceased donation for HCPs. Education for medical students has been suggested to have a positive impact on donation advocacy and donation conversion rates, 2 outcomes consistent with the goals of DP programs.113 Physicians and other HCPs have identified the need for education on death determination to minimize any risk of diagnostic error. In addition, low levels of knowledge about the donation process has been associated with fewer potential donors being approached for consent, lower consent rates and lower donation rates overall.114-116
Given their expertise and experience, DPs are well suited to act as leaders in deceased donation education initiatives. In many cases, education is part of the defined DP role. As donation advocates, it is important for DPs to present a balanced perspective of organ and tissue donation that enables learners to support donation based on a complete understanding of the process.
Issue 1: Presenting a Balance Perspective
The American Association of Educators’ code of ethics states: “The professional educator endeavours to present facts without distortion, bias or personal prejudice.”117 The DP must balance the role of donation advocate with their role as an educator. Although there is frequently convergence of these roles, they may also conflict, particularly when teaching involves more controversial aspects of deceased donation.
Vernon et al118 described the development of organ donation curriculum for medical students that attempted present a balanced perspective. This was accomplished by involving representatives from the ICU, the organ procurement organization and a transplant service. The curriculum used several learning modalities (presentation, small group discussion, debate) to give the learners an opportunity to explore deceased donation issues. The curriculum was well received by the learners, who demonstrated improved knowledge on follow up testing. The researchers concluded that such an approach was an effective way to educate medical students about donation.
Issue 2: Funding Source for Educational Program
Educational initiatives funded by transplantation organizations may risk introducing bias to educational efforts. In other areas of medicine, the use of industry based-funding has been discouraged, based on evidence of how physicians are inappropriately influenced by industry sponsorship.119
It is important to recognize that the goals of education on deceased donation are likely to differ from those of the industry sponsor. For example, education programs on deceased donation ought to focus on optimizing the potential for donation. This differs from the perspective of a pharmaceutical company that produces antirejection drugs, where the primary desired outcome is successful transplantation of as many organs as possible.
Most academic medical institutions have developed recommendations for industry sponsorship in research and educational initiatives. A common approach is that industry sponsorship for education is placed in a central repository that is then distributed by the institution to approved educational programs.120 Using this approach, a donation-related education initiative supported through this type of program may be appropriately distanced from the influence of industry.
Theme 7: Remuneration
Financial incentives for organ donation are a contentious ethical issue. Gill et al121 examined the applicability of various types of ‘financial incentives’. They concluded that remuneration of professionals for “organ donation services” was not only acceptable, but had the potential to reduce the conflict of interest experienced by MRPs. The best model of remuneration, however, remains unclear.
Canadian recommendations are against providing remuneration based on quantitative performance measures such as donation rates.59 In the United Kingdom and Australia, remuneration of DPs is not associated with quantitative performance measures such as donation rate or donor actualization rate.46 Similarly, the TGLN Code of Ethics for DPs highlights the importance of recognizing that funding for DPs in their program is not related to organ yield or number of donors.16
The source of funding for DPs has also been identified as a potential conflict. For example, participants in a Canadian meeting voiced concern that remuneration provided through an organ procurement organization or critical care department might constitute a conflict of interest. The group highlighted the need to separate accountability from payment.59
Discussion Part 2: How can DPs enhance ethical practice of donation medicine?
It has been suggested that one key role for DPs is to ensure the donation process itself is ethical.122 This is supported by evidence of an association between perceived unethical practice and reluctance to donate.123 Thus, through their role of enhancing ethical donation practices, and adherence to recommendations on best practices, the DP may increase deceased donation rates. There are a number of ways that DPs can make the process of donation more ethical.
Issue 1: Enhanced Separation Between End-of-Life Decision Making and Deceased Donation
Trust in the deceased donation process is key to ensuring ongoing public (and professional) support and participation. For example, members of the public cite fears that registering will affect adversely the decision to provide aggressive care as the reason they have not joined a donor registry.112 The distinct role of the DP (or their designate) relieves the MRP of any role in the donation process. This enhanced separation fosters public trust in the system.
Issue 2: “Normalization” of the Donation Process
The American College of Critical Care Medicine recommendations for end-of-life care describe organ and tissue donation as an “integral part of end-of-life decisions and bereavement practices.”124 Despite this assertion, donation is frequently perceived as an exceptional process. Littlejohns et al65 argue that changing perspective, so that donation is the norm rather than the exception, facilitates donation requests.
The presence of a DP specialist within a healthcare program equates donation to other specialities – specialities that are considered a routine part of healthcare. Such normalization of donation has the potential reduce the moral distress associated with donation that is experienced by some HCPs and members of the public.
Issues 3: Support for Other Healthcare Workers Involved in Donation
At the bedside, HCPs may experience moral distress relating to donation. For example, Meyer et al report the experience of critical care nurses feeling torn between the care for a dying patient, supporting bereaved relatives and facilitating the donation process.125 The DP has the opportunity to support RNs in these roles through shared responsibility for potential donors.
Other HCPs who are tasked with approaching families regarding organ and tissue donation may be reluctant to proceed due to concerns with how the family might react. This may be accentuated in the setting where nurses have not been trained in how to approach relatives about deceased donation.126 The DP has an opportunity to address issues with training at a local level.
Bosek127 developed recommendations for nurse managers of units involved with deceased donation. The purpose of these recommendations was to enhance the experience of deceased donation process for unit staff through donation advocacy, education and support of staff members. The expectation was that this role would have a positive effect on deceased donation. Given that the DP position involves many similar roles, it is reasonable to anticipate similar benefits.
Issue 4: Identification and Care of Potential Donors in the ED
The role of the ED in donation is less established in many countries. As this role grows, a new group of HCPs is becoming more involved in the donation process. ED physicians are unlikely to have an established patient/family relationship or preexisting knowledge of the patient, a situation that may work against the donation process.63,64 Michael and Jesus emphasize the importance of active support from the organ procurement organization in their recommendations for the care of potential donors in the ED.20 The DP may be able to fulfill this support role.
Issue 5: Education of Healthcare Workers
Education of HCPs on deceased donation appears to increase rates of organ donation.125 In addition, there is evidence that education can alleviate more distress associated with organ donation experienced by HCPs. For example, Hannah described a “critical incident” whereby a lecture prompted her to identify that she and other critical care nurses had not been approaching families regarding tissue donation. She identified lack of education along with a lack of understanding of ethical values associated with deceased donation as the reason for this behaviour. She suggests that education has the potential to overcome the ethical issues in this situation.116
Issue 6: Improved Compliance With Best Practices in the Deceased Donation Process
Improving deceased donation practices includes minimizing diagnostic errors in the recognition of potential donors, death determination and donor management.
Improving the management of organ donors increases the likelihood of successful donation and transplant outcomes and actualizes donor wishes. In this case, ethical practice involves ensuring that the opportunity to donate is provided and that best practice guidelines are followed during the care of the potential donor.
Issue 7: Improving the Care of Potential Donors
Despite existence of a recommended approach to address conscientious objection, a significant number of physicians may not feel obligated to refer patients for procedures that they have moral objections to.128 The option to involve a DP offers an opportunity for physician to easily refer cases that they are not comfortable with, facilitating the ethically accepted process of conscientious objection.
This review is based on a search of indexed literature both biomedical and psychosocial science databases. The inclusion of a specific search for bioethics frameworks seeks to include any relevant guidance developed by the bioethics community that might have otherwise been missed. The search for nonindexed publications was nonexhaustive, and thus may not be reflective of the full body of work on this topic. In particular, individual DP programs may have developed their own guides for the management of these issues that were not included in this review.
This review describes several ethical challenges that practicing DPs may encounter, as well as highlights the potential impact of DPs on ethical practice in donation medicine. Although some guidance for the management of these challenges were identified, recommendations were generally quite scarce. As the DP specialty continues to grow, it will be important to both identify ethical issues faced by this group of physicians as well as to develop tools to guide ethical decision making in their practice.
The authors wish to acknowledge the contribution of the other members of the Canadian Blood Services Donation Physician Ethics Guide Planning Group (Jeff Blackmer, Paul Byrne, Sonny Dhanani, Christy Simpson and Sylvia Torrance) for their assistance in developing the themes which were used in this article.
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