sign in sign up
<<
Home , Organ donation

7.1.4 Donation

*Updated December 17, 2015, 2015 by Linda Wright, MHSc, MSW and Daniel Z Buchman, PhD

Walter Glannon, PhD

Updated by: Daniel Z Buchman, PhD, Linda Wright, MHSc, MSW

Learning Objectives

1. To appreciate the ethical difference between proxy to withdrawal of -support and proxy consent to for transplantation 2. To appreciate potential ethical tensions between ' promotion of for transplantation and their duty of care to critically ill patients 3. To appreciate potential ethical tensions between a capable patient's wish to donate organs after and family objections to organ donation.

Case

Mr. Johnson is a 28-year-old lawyer who was previously healthy but has sustained a severe brain injury in a motor vehicle accident. Shortly after arriving comatose in emergency, he is intubated and transferred to the (ICU). His parents are his legal substitute decision-makers (SDMs). Given the extent of his brain injury, the intensivists treating Mr. Johnson tell his parents that his prognosis is poor. The ICU staff note the possibility that he might emerge from his coma and regain some brain . Yet Mr. Johnson remains comatose, and his condition does not improve for seven days. At this point his parents, aware of the poor prognosis, tell the medical staff that, at an earlier time, their son told them that he wanted to donate his organs for transplantation after his death. However, the patient has not formally expressed a wish to donate organs on his driver's license or in an advance directive. The parents ask that he be extubated and that all life-support be withdrawn so that he can be declared dead and his organs donated for transplantation.

Questions

1. Do Mr. Johnson's parents have the right to decide that life-support be withdrawn from their son so that his organs could be procured for transplantation? 2. If the intensivists identify Mr. Johnson as a potential organ donor and approach his family for proxy consent to donation, would this create a conflict of interest for them and violate their duty of care to this critically ill patient? 3. Is it possible that the ICU staff might declare death prematurely in order to procure viable organs for transplantation, even if the patient or his parents had consented to organ donation? 4. If there were written documentation of Mr. Johnson's wish to donate his organs after his death, and yet his parents objected to organ donation, would they have the right to override his expressed wish?

Discussion

CMA Code of Ethics The "Responsibilities to the Patient" and the "Responsibilities to Society" sections of the "CMA Code of Ethics (updated 2004)" produced by the Canadian Medical Association are relevant to this case.1 These include benefiting and taking all reasonable steps to prevent harm to patients, as well as communicating with and obtaining consent from patients (or their surrogates) to withhold, initiate, continue or withdraw certain medical procedures. In this case, there are two distinct forms of consent at issue: proxy consent to withdraw life- sustaining treatment and proxy consent to organ donation for transplantation. The relevant responsibilities may also include promoting as a way of curing or controlling disease and alleviating suffering of patients with end-stage organ failure. With deceased organ donation, there is a potential ethical conflict in discharging these two professional responsibilities.

Legal Issues Organ donation after a death determined by neurological criteria (permanent cessation of all brain functions) and tissue donation after a death determined by circulatory criteria (DCD; permanent cessation of respiration and circulation) are legal and supported by medical practice in . DCD is a relatively new practice in Canada. As of 2012, only British Columbia, , , Quebec, and practice DCD2. Deceased organ donation from death determined by neurological criteria or DCD must be consistent with the Dead Donor Rule—a widely accepted ethical standard—which says that organs for transplantation may only be procured ethically after the clinically determined death of the patient.

Contextual Factors Canada has one of the lowest organ donation rates among industrialized nations. In 2012, only 17% of eligible patients under 70 who died in a Canadian hospital became organ donors2. The number of living donors has been greater than the number of deceased donors nationally, with regional variation. The gap between the number of available organs and the number of patients on the transplant waiting list is widening. Because the need for transplantable organs far exceeds the supply, many patients in end-stage organ failure die while waiting for a transplant. Patients in end-stage renal failure may survive on , but the quality of life for patients with a transplant may be better than the quality of life on dialysis. Moreover, kidney transplants are more cost- effective than dialysis over time. Deceased organ donation does not involve the same risks as living donation. Living organ donors are at some risk of complications resulting from the surgical removal of the donated organ. Also, a relatively small but significant number of living kidney donors in good health at the time of their donation have subsequently developed end-stage renal disease and have become candidates for .

Q1. Do Mr. Johnson's parents have the right to decide that life-support be withdrawn from their son so that his organs could be procured for transplantation?

Given that Mr. Johnson's brain injury has caused him to lose all decisional capacity, the legal SDMs can make decisions about medical treatment on his behalf. The SDM can exercise substitute decision- making provided that it is consistent with the previously expressed wishes of the patient. Or, in the absence of any expressed wish, the surrogate can exercise substitute decision-making provided that it is consistent with what the SDM believes the patient would have wanted if he or she were capable to decide. The SDMs should be informed about the consequences of withholding, initiating, continuing or withdrawing treatment. In this case, the parents could consent to the withdrawal of life-sustaining treatment if this is what their son would have wanted. The ICU staff caring for Mr. Johnson are obligated to respect the parents' decision to withdraw life-support if, in their professional judgment, continued care would almost certainly be of no clinical benefit but would only burden the patient and if they believe that the parents are not making decisions consistent with their son’s previously expressed wishes, if known, or acting in their son's best interests. Still, proxy consent to withdraw life-support must not be conflated with proxy consent to organ procurement for transplantation. These are separate issues requiring two distinct acts of consent. The parents' decision to withdraw life-support from their son must not be influenced by their wish to enable donation of their son's organs. Their decision to have their son's organs procured for transplantation could benefit other patients needing a transplant. Yet this could result in the premature withdrawal of appropriate care and hasten the patient's death. This would present at least a perceived — if not real — conflict of interest for the parents, hence the ethical reasons for separating proxy consent to withdraw life-sustaining treatment from proxy consent to organ donation.

Q2. If the intensivists identify Mr. Johnson as a potential organ donor and approach his parents for proxy consent to donation, would this create a conflict of interest for them and violate their duty of care to this critically ill patient?

The ICU staff has a primary duty of care to Mr. Johnson. Despite the fact that his prognosis is poor and that his death may be imminent, they cannot allow the transplant potential of his organs to compromise their duty of care to Mr. Johnson. It might appear that the ICU staff would be in a conflict of interest, since by identifying him as a potential donor whose organs could benefit patients waiting for a transplant, they might fail to discharge their duty of care to him until his death. This perceived conflict may be exacerbated by the fact that intensivists often work in close proximity to transplant teams.

Discussions and decisions between intensivists and families or other surrogates about withdrawal of life-support from a critically ill incapable patient should be made independently of discussions and decisions about organ procurement. Some people might perceive ICU physicians' asking about organ donation as an indication that the primary concern of the medical team is with the patient's organs, rather than with the patient as a person. This could generate the perception that the decision to withdraw treatment and procure organs suggests that the patient's life has no intrinsic value and would prevent him from having a humane and dignified death. In addition, this could weaken or undermine public confidence and trust in the medical system in general and in transplant programs in particular, which in the long term could adversely affect people's willingness to donate their organs after death. The decision of the parents will be influenced by the general knowledge that organ donation is a possibility in this situation. Nevertheless, steps can be taken to help parents or other SDMs separate the issues.

One way of avoiding actual and perceived conflicts of interest for ICU staff in these cases would be to have a neutral third party, acting independently of both the ICU and transplant teams, approach the family to raise the possibility of organ donation. This should be healthcare professional with expertise in approaching families around organ donation. Such a request should be made in a way that is sensitive to the family's emotional state and respectful of their beliefs and values. Ideally, this healthcare professional would coordinate the process of consultation and consent that extends from the withdrawal of critical care to organ procurement and transplantation. The option of donation should not be presented in a manner that might make the family feel coerced to agree to donation or might make them feel that refusing to donate is a selfish act. Pointing out that donation can save and improve the quality of life for many people can provide comfort to a family in . Nevertheless, a request for deceased organ donation must always be done in a way that is sensitive to each family's emotional needs and their cultural, religious and spiritual beliefs.

To summarize, there are two separate actions and two separate goals at issue. The first action is deciding to withdraw life-sustaining treatment because the patient or surrogate believes that continued treatment is more of a burden than a benefit to the patient and therefore not in his best interests. The second action is deciding to retrieve organs for transplantation to benefit others needing organ transplants, as desired by the patient or his surrogate decision-maker. For intensive care and transplant teams, these actions and their goals must be treated separately.

Q3. Is it possible that the ICU staff might declare death prematurely in order to procure viable organs for transplantation, even if the patient or his parents had consented to organ donation?

This question raises some of the same concerns raised in Question 2. Life-sustaining treatment can be withdrawn from patients when their condition is deemed irreversible and when their death is imminent. In some instances, however, it can be difficult to make this clinical determination. The Dead Donor Rule specifies that it is ethically acceptable for organs to be retrieved from patients only after a clinical determination of death. This rule was adopted to protect patients from, among other things, the premature withdrawal of life-support. Yet a patient with a severe irreversible brain injury cannot medically benefit from continuing intensive care . In these cases, continuing life-support may lead to an unfavorable harm-benefit ratio for the patient. While the timing of death is important, more important is whether interventions that keep a patient alive are in the patient's best interests. In cases when a patient is considered to be dying imminently and when life-sustaining treatment is almost certain of no benefit the patient, his or her family or other surrogate can consent to the withdrawal of treatment on the patient's behalf. Only after they have consented to this and the ICU staff has agreed with their decision, can the legal SDM(s) consent to organ procurement for the purpose of organ donation. The condition of the critically ill patient, the ratio of benefits to burdens of continued treatment, and the of the patient or his surrogates are more ethically important than the question of when death occurs. Provided that the conditions described earlier are met, and provided that consent to withdrawal of life-support and consent to organ donation are treated separately, there is no cause for ethical concern about premature declaration of death. There is no real conflict of interest for ICU physicians caring for a critically ill patient whom they might identify as a potential candidate for deceased organ donation. A more controversial issue is whether, apart from ventilation, fluids and nutrition could be withdrawn from a brain-injured patient who had progressed to a permanent vegetative state. Yet this would not be an issue directly relevant to the case at hand if organs were not viable for transplantation as a result of withdrawing these forms of life-support.

Q4. If there were written documentation of Mr. Johnson's wish to donate his organs after his death, and yet his parents objected to organ donation, would they have the right to override his expressed wish?

Although the patient's parents are his legal SDMs, this does not mean that they can make any decision they want, regardless of any previously expressed wishes of the patient. Surrogate decision-makers act appropriately when they act according to the patient’s prior expressed capable wishes, if known, and if not, in the best interests of the patient. This may involve executing the patient's wishes or else making decisions about medical treatment that the patient would have wanted. Yet parents or other SDMs may object to the idea of organ donation after death because they believe that it violates the sanctity and integrity of the body of the deceased. Cultural and religious beliefs may explain these attitudes, and consequently the refusal to consent to organ donation. This refusal should be respected when there is no evidence of the patient's wish to donate. However, in some cases a patient has expressed a wish to donate his or her organs, and yet the SDMs override the patient's wish.

Overriding a capable person's expressed wish to donate organs after death is ethically and legally objectionable and should not be permitted for two main reasons. First, it violates the patient's autonomy by failing to respect his or her wishes. Second, by failing to respect these wishes, it precludes the realization of benefit to others who would receive the patient's organs, a benefit that is an essential feature of the patient's wish and intent to donate. Indeed, insofar as the patient's interest is not respected, it amounts to a form of posthumous harm to him or her, by impacting the patient’s legacy. That is, the interest of the patient in donating organs survives his or her death and generates an obligation for the surrogate decision-makers to respect that interest and ensure that it is fulfilled. While medical professionals involved in donation should acknowledge the emotional difficulty that families may have in executing a patient's wish to donate organs, this is not an ethically defensible reason for overriding the patient's surviving interest and his or her autonomously expressed wish. This wish should be respected in accord with the principle of respect for patient autonomy and treating the patient as a person who is an end in himself or herself. Hence no family overrides should be allowed in these cases on purely ethical grounds. Similarly, if the patient has consented to donation before death, as long as there is no indication that the patient has withdrawn his or her consent, was coerced into organ donation, or that the consent is invalid for any reason, then the consent is legally valid3. The practice in Canada has been to seek family authorization for deceased donation regardless of the patient’s prior documented intention or consent to donate. There are, then, ethical, legal and social aspects that must be considered in cases where families wish to override a patient's wish to donate.

References

1. Canadian Medical Association. CMA code of ethics (update 2004). Ottawa: Canadian Medical Association; 2004. Available from: http://policybase.cma.ca/PolicyPDF/PD04-06.pdf 2. Canadian Institute for Health Information. Deceased organ donation potential in Canada. Ottawa, ON: CIHI; 2014. 3. Goldfelt B, Caulfield T, Nelson E, Wright L, Hartell D, and the CNTRP team. Fast Policy Facts: Consent. Ottawa: Canadian National Transplant Research Program. Available at: http://media.wix.com/ugd/5a805e_abb9fbc5acb9425ba094574d4d59bdcf.pdf

Resources

American Journal of Transplantation website: http://www.amjtransplant.com Canadian Council for Donation and Transplantation (CCDT) publications. Available from: http://www.ccdt.ca/english/publications Canadian Institute for Health Information (CIHI), http://www.cihi.ca Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. Canadian Medical Association Journal 2006; 174: 627–33. Ingelfinger, J. Risks and benefits to the living donor. New Journal of 2005; 353: 447–9. Shemie SD, Baker AJ, Knoll G, Wall W, Rocker G, et al. National recommendations for donation after cardiocirculatory death in Canada. Canadian Medical Association Journal 2006; 175(8 Suppl): S1–S22. Truog R, Robinson, W. The role of and the dead donor rule in the ethics of organ transplantation. Critical Care Medicine 2003; 31: 2391–6. United Network for Organ Sharing (UNOS) website: http://www.unos.org Veatch R. Transplantation ethics. Washington, DC: Georgetown University Press, 2000.