Open Peer Commentary Target Article:
“Addressing Consent Issues in Donation after Circulatory Determination of Death”
Death at the door of the operating room Samia A. Hurst
Citation: Am J Bioeth. 2015 Aug;15(8):31-3
In approaching therapeutic objectives around the end of life, doctors tend to focus on whether or not to use specific interventions. Ethical debates focusing on end-of-life issues often deal with the conditions under which it is permissible to provide
symptom relief when this may risk hastening death,(1) or to withhold or withdraw interventions such as cardio-pulmonary resuscitation, artificial ventilation, artificial nutrition or hydration.(2) This literature mostly focuses on discrete decisions
regarding specific interventions, and on the most ethically justifiable way of reaching such decisions. In contrast to health professionals, patients and their families do not seem to focus on specific interventions as much. Rather, they tend to focus on how best to fulfill the dying process as a whole – including considerations such as life completion, affirmation of the whole person, (3, 4) contributing to others,(3) or saying goodbye (5)- with appropriate support and without disruption.
These differing goals can lead to misunderstandings and difficulties in the practice of end of life care, as health professionals seek to obtain clear decisions regarding this or that interventions, while patients and their families attempt to reach a ‘good death’
by seeking control of the circumstances surrounding death rather than of the interventions preceding it. This difficulty is likely to be exacerbated whenever the circumstances of death provide less space for family members. This, of course, is the case in situations of controlled donation after circulatory determination of death (cDCDD).
Set against this background, Overby and colleagues’ analysis of the informed consent process in cDCDD, though extensive, remains limited. The authors do provide a welcome reminder that patients and their family members often lack
important information required to make appropriate decisions. We agree that
“cDCDD requires the higher bar of informed consent, rather than authorization for the patient’s rights to be properly protected.” Informed consent, however, exists to
protect self-determination and self-determination is of a rather narrow sort if family members are presented with ‘take it or leave it’ approach to organ donation and the interventions that are required in the case of cDCDD. This is especially true if none of the options with which they are presented adequately reflects their preferences.
It is plausible that cDCDD presents family members with just such a situation.
Consenting to donation will in many such cases represent the best way to affirm the values of the dying person, and allow her to contribute to others even in death. At the same time, unless deliberate action is taken to prevent this, such consent will often sacrifice the chance to say goodbye without disruption. Overby and colleagues describe the procedure leading to organ procurement using a device such as ECMO.
Urgent laparotomy is an alternative modality that may increase the stress around end-of-life for family members. In both methods, the authorized time between withdrawal of life-sustaining support measures and cardiac arrest is limited to a couple of hours. This time frame may not be sufficient to allow the dying process to be undisturbed for family members, unless targeted efforts are implemented to assist them during this time. The risk of hastening death or undertaking pre-mortem
intervention in order to preserve the quality of organs are non negligible. In addition, many family members need more than the few minutes allowed by the procedure after the cardiac arrest to say goodbye (6). Unless these conflicting goals of families at the end of life of their beloved can be reconciled, cDCDD will present family members with a very real conflict of interests.
Facing decisions involving goal conflicts is not, of course, a problem in itself. Indeed, making just such decisions is an inherent part of self-determination. That families face such conflicting goals in this particular case does, however, raise problems.
First, the burden on families may be considerable. This seems to be the case even in organ donation after brain death, after which as many as 42% of families present post-traumatic stress disorder.(7) There is no report about the grieving process and long-term outcome for family members who had accepted organ donation and who are confronted with the final decision on organ retrieval in the case of circulatory determination of death.
Moreover, the choice given to families represents a very limited respect for their autonomy and their role as patient proxy. In effect, this choice boils down to veto power over specific interventions; a view which understandably flows from medical priorities regarding end-of-life decisions. Families, however, are not given a genuine choice regarding the circumstances of death and how these could reflect an
affirmation of the dying person as well as provide a chance to say goodbye. Nor are they given options that may make these different goals more compatible. Such a choice would be more in line with what we know of family and patient priorities at the end of life, and would thus represent better respect for their self-determination than a simple ‘yes or no’ decision.
In addition to ensuring that understanding of the specific medical interventions involved here is improved, then, hospitals should ensure that the dying process is made as harmonious as possible for the next of kin(8). At the very least, serious efforts should be made in this direction and the implementation of cDCDD should be conditional on the best possible approach being implemented. This is important to ensure the well-being of families going through a difficult event. It is also important to respect their self-determination, by enabling them to retain some degree of control over the circumstances of death, beyond discrete choices regarding specific interventions. Finally, it is likely to be important to promote organ donation after circulatory determination of death. Currently, the refusal of organ donation by family members remains a major limiting factor for the number of available organs,(9) and consent rates of families are lower in the case of circulatory determination of death than in the case of brain death.(10)
Developing full-blown support for family members in such circumstances, including space for them to say goodbye after life support is removed, is thus of vital
importance. Otherwise, in terms of end of life care, families making decisions whether to donate after circulatory determination of death may be asked to provide -or deny- informed consent to what may simply amount to a bad deal.
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