Non-Heart-Beating Organ Transplantation Practice and Protocols (2000) / Chapter Skim
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6 A Research Agenda for Non-Heart-Beating Organ and Tissue Donation
6 A Research Agenda for Non-Heart-Beating Organ and Tissue Donation
Pages 65-86
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From page 65... ...
The committee identified several concerns that should be addressed through further data collection and research, and the systematic coordination and communication of findings. RESEARCH PRIORITIES The questions that arose during the workshop and committee deliberations clustered around two main areas of concern: first, the impact of non-heartbeating organ donation on the patients who become donors and on their families, second, the impact of non-heart-beating organ transplantation on transplant outcomes.
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From page 66... ...
Why are the costs higher, and what might be done to offset these higher costs? Are the data on the outcomes of transplantation with organs from nonheart-beating donors adequate to persuade Organ Procurement Organizations (OPOs)
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From page 67... ...
One primary purpose and two related, secondary purposes are as follows: The primary purpose of such an evaluation is to assess the potential benefits and potential harms of non-heart-beating organ donation to four key stakeholder groups: patients (i.e., prospective non-heart-beating donors and recipients) , donorfamilies, the health care system, and society or more precisely to underlying normative values that American society and American medicine have traditionally identified as important.
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From page 68... ...
3. A third purpose is to identify barriers to the development of non-heartbeating donation protocols and to design and test interventions to enhance nonheart-beating donation in ways that minimize potential harms, while maximizing potential benefits, to donor families and to organ recipients.
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From page 69... ...
In addition, after families have decided to withdraw treatment and allow their loved one to die, trained OPO requesters may approach the family to discuss non-heartbeating donation. Thus, data can and should be collected on the number of cases, by hospital and OPO, in which a trained requester has initiated a donation request to a family after the decision to terminate treatment was made and on the number of families consenting to such staff-initiated donation requests.
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From page 71... ...
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From page 72... ...
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From page 73... ...
Evaluation tools could be developed to ascertain improvements in the clinical staff's comfort in discussing a grave prognosis with families, staff understanding of key ethical concepts necessary to help families make decisions about forgoing life support, and staff comfort discussing death, dying, and organ donation. Finally, there may also be broad, societal benefits, such as the cultivation of greater altruism among the public and greater societal openness toward dying, death, and organ donation.
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From page 74... ...
For example, clinicians caring for patients are the ones who alert organ procurement organizations that their patients may be approaching brain death and may therefore be appropriate as potential donors. Secondly, there may be strong incentives in health care institutions specializing in transplantation that could privilege organ procurement interests over patient interests.
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From page 75... ...
These constructs are difficult to measure, but they are central to establishing public trust. Impact on the Quality of the Dying Experience for Patients and Families In the case of organ procurement following death determined by neurological criteria, the declaration of brain death creates a sharp line between patient treatment and organ procurement.
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From page 76... ...
1831) found that the average terminal hospital stay for a donor who had been declared dead by neurological criteria was $33,997 of this amount, $17,385 was for care that one would consider "futile" for the patient but "necessary for improved organ procurement rates." Although these estimates were based on donors who had died by neurological criteria, there will surely also be costs for families opting for non-heart-beating-donation.
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From page 77... ...
A Research Agenda in Three Parts Box 6-1 presents eight research questions that ought to drive the evaluation research agenda. The first question, What impact, if any, has non-heart-beating B ~- - - ..
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From page 78... ...
As the figure indicates, the agenda is "triangulated" in the sense that when taken together, all three basic types of research activities would provide significant information on the extent to which non-heart-beating donation protocols are, in fact, minimizing harms and maximizing benefits for all the key stakeholders, as well as data on how these protocols could be improved. In the remainder of this section, relevant measures, data collection methods, and special methodological considerations are proposed for each of these three research priorities.
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From page 79... ...
Closed-ended questions asked via telephone interview yielded important information about how to improve the donation request process.
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From page 80... ...
satisfaction with the donation request process, (5) satisfaction with the care the family and loved one received, (e.g., optimal pain management, ample opportunities for family leave-taking)
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From page 81... ...
. Rather than having to withdraw treatment in the operating room, away from families, premortem insertion of these cannulae makes it possible for life support to be withdrawn in the intensive care unit, where families can say their farewells.
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From page 82... ...
For the purposes outlined here, it would be wise for reviews to be done on a subsample of all cases in which patients meet some explicit criteria of grave prognosis (perhaps a certain number of hours or days on ventilatory support) , not just on a subsample of cases in which discussions about the withdrawal of life support have been initiated.
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From page 83... ...
For example, some institutions might want to explore ways to enhance family leavetaking and thereby address donor family concerns about high tech death. Special rituals or compromises in the timing of removal to the operating room might be explored and their impact on families (and organ viability)
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From page 84... ...
Since the clinical criteria for neurological determination of death are straightforward and usually recorded in the medical chart, death record reviews routinely done by OPOs, clearly establish which patients who had been declared dead by neurological criteria were candidates for donation and whether their families were approached, as they should have been. In the case of non-heartbeating donation, it remains an open question as to whether medical charts are a good means of identifying prospective candidates.
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From page 85... ...
The primary goal of this evaluation plan is not to increase donation rates, but rather to inform families, policy makers, ethicists, health care organizations, OPOs, the transplant community, and the general public about the trustworthiness of non-heartbeating donation protocols. Thus, the intent of this research is neutral: to uncover potential harms and benefits for patients and their families, so that protocols can be implemented with confidence or be redesigned to address problems.
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From page 86... ...
Non-heart-beating donation under such protocols as these has great potential for providing options to patients and families, and for contributing to future developments in organ procurement and transplantation. The findings and recommendations of this report will be disseminated to OPOs and transplant centers, to physician specialty groups, and to transplant and health care professional associations.
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