When talking with families, information about treatment withdrawal should be clearly separated from information about organ retrieval
As stated in the introduction, this principle is crucial to ensure that the intensivist can make a treatment-withdrawal decision in a manner that is completely independent from potential Maastricht type III donation.
Supplying information about treatment withdrawal is among the intensivist’s normal duties
Information given to the family about the severity of the patient’s condition and about treatment-withdrawal decisions must be separated from the information about potential organ donation. The SRLF recommends following an information sequence similar to that suggested for stroke patients, as well as the very early delivery of information, at admission of the patient to the ICU: (a) the family is informed about the severity of the situation, and (b) explanations are given about the strong likelihood of treatment withdrawal depending on the patient’s clinical condition and under the usual conditions (collegial discussion, family conference, advice from a consultant, and detailed description of the process in the patient’s medical record).
Nevertheless, there are two situations in which the issue of separating the treatment-withdrawal decision from potential organ donation is not really relevant: (a) availability of a document (e.g., an organ donor card) in which the patient indicates his or her desire to be an organ donor (at present, this type of document seems applicable only in the event of brain death, but its relevance may be extended subsequently to Maastricht type III donation); (b) and spontaneous disclosure by the family, during or just after the family conference about treatment withdrawal, that the patient previously expressed a desire to be an organ donor. However, under no circumstances does this form of consent detract from the duty to first inform patients about all organ retrieval modalities, including Maastricht type III.
Here, the intensivist informs the family that treatment withdrawal is expected to be followed by the death of the patient. There is no reason to act differently in situations where organ donation may be considered than in the general situation described in the Léonetti law and SRLF recommendations, before the emergence of the Maastricht type III issue. As always, the procedure must be followed scrupulously; in particular, obtaining the advice of an external consultant contributes to the legitimacy of the treatment-withdrawal decision, which must be made independently from any considerations about potential organ donation.
Who should inform the family that organ donation is a possibility?
This point of the procedure is particularly sensitive. The knowledge that treatments will be withdrawn generates profound emotional distress in the family members. Indicating that organs may be collected is probably an aggravating factor (except when the family spontaneously considers this possibility or accepts immediately when the issue is raised). The respect due to the dying person and the duty to provide care to the family, together with the requirement that treatment-withdrawal decisions be made independently from organ retrieval decisions, provide both arguments for and arguments against each of the two available options: to have the issue of organ donation raised initially by the healthcare team or by the transplant coordinator team. In both situations, the healthcare team must be closely involved in the interviews and in the procedure.
Having the healthcare team raise the issue of organ donation ensures continuity of the relationship with the family and facilitates the intervention of the transplant coordinator team, which occurs immediately afterward, particularly when the family spontaneously brings up the possibility of organ donation. A potential disadvantage, however, is that the family may become unsure or even suspicious about the legitimacy of the treatment-withdrawal decision. On the other hand, in theory, having the issue raised by the transplant coordinator team in the presence of the healthcare team may underline the independence of the treatment-withdrawal decision from a desire to enable organ retrieval but also may raise questions in the minds of the family members.
The SRLF has not definitively stated that one or the other of these two possibilities is best. Both possibilities should be considered on a case-by-case basis. In every case, when the family is unprepared and has not requested organ donation, the possibility of Maastricht type III donation should be raised in a sensitive manner that will avoid a rejection response.
The timing of the investigations needed to determine whether organ donation is contraindicated is a difficult issue: should the investigations be done before the patient dies and before the family is informed or only after consent of the family is obtained? Is it logical and cost-effective to perform these investigations without knowing whether the families will consent to organ donation? In theory, there are two available options.
A reasonable advantage of performing the investigations (jointly with the transplant coordinator team) before informing the family is protection of the family from a trying phase of uncertainty. The results of liver and kidney ultrasonography and viral serologies indicate whether organs can be collected after the patient dies. This sequence has the theoretical advantage of not subjecting the family to the double ordeal of first discussing potential organ donation then learning that donation is not feasible. Testing for the HIV without consent from the family is a drawback, however; in addition to the absence of consent, which is required for this test, a positive result may generate distress of greater magnitude than that whose avoidance was intended. The physician must either inform the family of the positive HIV result, shown by a test that was performed without consent and unrelated to patient management (but that was done under the hypothesis of organ retrieval, which contradicts the principle that underlies our thinking) or fail to disclose the result, as if the patient had refused disclosure, except that the wishes of the patient in this regard are unknown.
Performing the investigations only after telling the family about the possibility of organ donation has the advantage, should consent to donation be given, of obtaining permission from the family to collect samples and implies that the results will be communicated to the family, including those of the HIV tests. These results may generate distress or disappointment, thereby jeopardizing the achievement of sufficient serenity to initiate the grieving process under favorable conditions. Nevertheless, given the potential disadvantages of the other option, full information of the family seems to comply best with both the legal and the ethical requirements that govern organ donation.
A ruling from the national advisory ethics committee (CCNE) would probably make a major contribution to this issue.
Depending on the option that was chosen, the healthcare team or the transplant coordinator team in the presence of the healthcare team will perform the following.
(i) Inform the family that organ donation is being considered to benefit patients who are on transplant waiting lists. If the patient expressed the wish to be a donor or the family spontaneously considered this possibility, instead of information that organ donation may occur, the family should receive information on donation modalities, as indicated below.
(ii) Before extubating the patient, obtain the explicit consent of the family to organ retrieval. Again, the modalities of this information should be adapted depending on the wishes expressed earlier by the patient or family.
The approach advocated by the SRLF is not different from the good practice rules to be followed when collecting organs from brain-dead patients, as outlined below.
Any wishes expressed explicitly by an adult patient (donor card, which can be likened to an advance directive for multiorgan retrieval; and verification of the donation refusal registry) should be honored. In this situation, collecting organs honors the patient’s right to autonomy. The relationship with the patient is not severed: instead, organ retrieval continues the therapeutic relationship by honoring the wishes the patient expressed as an autonomous individual. The technical procedure, far from inducing instrumentalization, serves the patient by respecting a choice he or she made before dying. In the setting of Maastricht type III donation, an important issue is whether consent given at a time the individual is healthy is applicable to the end of life. Wishes expressed previously by the patient are not sufficient, as the subsequent experience of a serious illness can profoundly modify the patient’s value system, leading to a change in the way he or she envisions the end of life. Far from resulting in a static construction, thinking evolves continuously in response to the life experiences it builds on.
If the patient did not express any wishes about organ donation before dying, and if the family did not raise the issue spontaneously, a family conference is in order. The rationale for obtaining informed consent from the family to organ retrieval and donation is that the family does not act based on their own wishes but instead based on what the dying patient would say if he or she were able to communicate. In this setting, every effort should be made to honor the patient’s wishes, if any were expressed clearly, which amounts to obtaining explicit consent.
(iii) Inform the family of the organ retrieval modalities and of the attendant requirements, particularly regarding the location where death will occur. The best location may be the operating room, for reasons related both to technical constraints and to the geographic distance between the ICU and the operating room. (see section below: where should the patient be extubated?)
(iv) Caution the family that the organ retrieval procedure may fail if the time from extubation to cardiocirculatory arrest is too long, which does not preclude the donation of corneas.
(v) Indicate to the family that the healthcare team is available for information about the necessary paperwork and that the family is free to withdraw their consent at any time.