Okay, I'm going to try to address in my talk today racial disparities or racial considerations in determination and acceptance of brain death. As my esteemed colleagues have brought up many of the conflicts that have arisen with respect to brain death, I'll try to move through those quickly so that we can focus on this topic. In terms of disclosures, I do have funding from the NICHD for work unrelated to this presentation but related to healthcare disparities and racial considerations in medicine and ethics. I will also disclose that I am a lawyer and an ethicist, so those viewpoints may come into play here as well as the fact that while I have been brought up in the medical community to have brain death ingrained as death in my mind, much of the work that I've done in the realms of ethics and the law have called that into question, and so I will share that I come at this topic with that perspective in mind. My objectives for today are to appreciate reasons why families object to the determination or declaration of brain death, to understand race as a potential factor in the termination of brain death and its objections, and to identify possible approaches to managing objections to brain death. I want to start with a quote from the family of Jahai McMath, and it's in the public sphere, so I think I can say her name, is the case that has been discussed of this 13-year-old girl who went in for a tonsillectomy, an adenoidectomy, suffered severe bleeding complications following that event and had an arrest during those bleeding complications. There was a near five-year controversy that ensued after her declaration of brain death in California with much public attention, much legal attention, and in an article written in the New Yorker called What Does It Mean to Die, the family of Jahai McMath, her mother made this comment saying, no one was listening to us, and I can't prove it, but I really feel it in my heart. If Jahai was a little white girl, I feel we would have gotten a little more help and attention. And I think this quote kind of embodies some of the perspective of minoritized communities with respect to the concept of not only brain death, but the care that they receive in the medical establishment, and that that perspective forms the basis of many objections that we see. So what are these influences of trauma, distrust, and bias that we see in the medical community? We know that previous experiences with health care systems, any experience, can influence a family's trust in the clinical team, and this includes scenarios related to the determination of brain death. Known groups that are at higher risk for cumulative trauma within the medical system include racial and ethnic minoritized groups, those facing socioeconomic hardships, and those with intellectual or developmental disabilities. Identifying racism and discrimination within or outside of the health care system has also been associated with higher incidence of traumatic stress symptoms within health care encounters. Individuals within these groups are also, we know, more likely to actually experience bias within the health care system, which then leads to more loss of trust over time. The previous, current, and cumulative exposure to trauma and bias aren't always factors in family objections. They are part of these complex social and structural factors that can correlate with and influence family objections. And one specific form of mistrust that shapes objections is a belief that medical teams, as we've heard, seek declaration of death by neurologic criteria in order to obtain organs. I've put this graphic up here to demonstrate that there are multiple steps along the process from when a medical team believes a patient may meet criteria for brain death to when an actual declaration of brain death may occur, and then either objection to that with continued organ support and possible additional procedures, like a trach and PEG, as we've heard, or withdrawal of organ-sustaining therapies. At any point along this pathway, objections can come up, moving one into the question of whether you do continue organ-sustaining therapies and move towards other technologies or not. I'm going to talk a little bit about some work that I've done, and this is a mixed-method study to assess sociodemographic factors associated with refusals of the determination of brain death and to better elucidate reasons for the refusals. This was a survey, and this publication is forthcoming, hopefully later this year, of 287 respondents to a full survey regarding brain death practices. A hundred respondents in this survey reported experiencing brain death refusals. Eighty agreed to an optional survey to better characterize these refusals, and 12 of these conducted in-depth interviews to provide contextualized examples of refusals. In these interviews, there were several provider perspectives that were revealed. For these 12 cases, seven families refused the second exam, while two refused the first, which suggests that there's some communication and potentially different understanding by families between the first and second exam that then prompts refusal of the second exam. Nine out of these children died in the hospital. However, a quarter of them were transferred home. Of the reasons for refusals, six out of 12 were waiting on a miracle. Eight out of 12 had a religious objection. One family felt they had the right to refuse, so this is a question of, does a family need to consent to the brain death exam? And half of the families refused the concept of brain death as an actual diagnosis. Seven of these cases had legal services involved. Five of them involved ethics committee. One of them went to litigation. And four cases added ancillary testing to aid in resolution of the case. And I think these demonstrate that refusals cases can provide important key perspectives that counter the view of widespread public acceptance of brain death. This is a distinct public that experience the potential for brain death of a loved one that needs to be engaged outside of assessing general perspectives on the acceptance of death by neurologic criteria. So what about provider practices? We found that experience of more than one refusal was associated with different provider practices and beliefs. So 2.9 times the odds of the tendency to obtain permission to perform the exam. 3.8 times the odds of willingness to permit philosophical or religious objections. 4.5 odds of belief that parents have the right to refuse the exam. And 3.3 times the odds of the belief that parents have the right to refuse apnea testing in particular. So what does this suggest? It suggests that there is a subset of providers that are already sympathetic to those who object to the determination of brain death. Or there is something about the lived experience of a refusals case that alters perspectives on from provide for at least some providers. It also challenges the belief that there is uniform or widespread acceptance among the medical community despite what expert consensus might suggest. In terms of characteristics of families and refusals cases, 46% were white, 64% were non-Hispanic, 80% reported religiosity, 66% were of lower or middle socioeconomic status, 16% had language barriers and 62% had provider mistrust. The most common reasons for refusals were waiting on a miracle or not wanting to give up. In terms of associations with refusals, religiosity was certainly associated with objection to brain death. Race and ethnicity was associated with needing time for others to arrive before the declaration of brain death. Lower socioeconomic status was also associated with the need for more time to grieve. And lower education reported was associated with the belief in individuals waking up from brain death. In terms of the providers and refusals cases, the majority of these were white, non-Hispanic. 81%, so pretty matched to the patient cases, were religious. When language barriers were present, they were associated with provider family ethnicity differences. Family provider religiosity discordance was associated with the religious objections and family provider religiosity concordance was associated with ideas of not wanting to give up and not believing in brain death. What this suggests in terms at least of race and ethnicity is that there's some socioeconomic and sociodemographic divide between families who refuse and providers. And that there are characteristics related to one's sociodemographics that are associated with refusal reasons, in particular the need for time. Reasons for refusals of brain death are matched to ones that have already been discussed. I won't go through these except to point out that lack of fluency in English came out as a major reason, as well as family culture in addition to religion. So from this study, we found that sociodemographic characteristics and mistrust were associated with reasons for refusals of brain death. That time can be an important mediator and that understanding reasons behind refusals can help in approaches to resolving these cases. We've also looked at cases in the legal literature related to refusals and found similar concerns. So religious objections have been raised with one case reporting respect for religious traditions is almost sacred for us. Moral or philosophical objections with statements such as there's simple clashes between definitions of death that surrogates ought to have the right to decide. And this came out in cases that dealt both with parents on behalf of decision making for their children, as well as with surrogates who are making decisions for people with advanced directives where the advanced directive indicated that the person wanted all life sustaining therapies maintained. Approaches to diagnosis for brain death were seen as a coercive alternative when a family declined requests to withdraw life sustaining treatment. So people reported that they came up with this idea to declare brain death after repeatedly seeking consent to terminate life support. And that the physical appearance of the body and perception about functions is meaningful. So things such as the perception that the patient was responding to the parent's voice and that the patient's brain was merely resting while the body healed. Ancillary testing were felt to be essential in some cases with ideas that you couldn't declare unless this had been done. There was fear of loss of medical insurance and other benefits as had been suggested before. And the idea that the determination of death is a policy matter. It involves not only medical considerations but as we heard previously multiple other perspectives. And that the determination of brain death ought to accommodate religious beliefs and provide an exemption. Additionally there was the idea that doctors and hospitals rely on legal definitions of death for defense with statements such as a physician saying we don't desire this outcome but must comply with the law. There are also organ donation considerations as has been raised with respect to brain death. Despite that there is pretty strong instantiation in CMS regulations that there must be timely notification about patients that might meet brain death criteria but that there ought to be separation of decisions about the termination of life sustaining therapies or the determination of death by neurologic criteria and organ donation itself. And ethics consultation has been helpful in many of these cases. In terms of strategies for approaching objections when we think about where refusals have occurred there can be opportunities after the first as well as the second exam to address these. Time is an important mediator in both. Transparency about the exam early can be helpful and what its implications are. Individualized trauma informed exploration of family preferences providing anticipatory grief services and suggestions early to gather family to have time with the patient. Time can also be provided in the later objections to declaration. Use of second opinions can be helpful and then considerations of whether to place limitations in care or to whether to acquiesce to the family to provide other sustaining technologies can happen after the second exam. So the last thing I'd like to talk about is this idea of I've said that we need to include the public perspective and we need to think about distinct publics that may have gone through the experience of brain death. So I want to talk about what does it mean to engage the public. I think we can look to definitions in other fields like when we think about community engaged research with key themes being collaboration and meaningful involvement throughout the process and recognition that there are many potential publics. There's not going to be a uniform viewpoint that we'll be able to ascertain. But if we accept that brain death is a social and legal construct at least in part then authentic public engagement doesn't mean how do we convince the public to accept a conception of brain death that was not informed by representative public views. So the 1968 Harvard criteria didn't have a public engagement component to it and we need to accept that convincing people that that's the right definition doesn't equal public engagement now. And then we also need to understand that if you look at the just Oxford definition of engagement it means to become involved with a group and to try to understand something or someone. So we need not only to bring the public into conversations and quote unquote educate them but we need to be educated by them on what their perspectives are. So what does the public understand? I won't go through a lot of this but I want to just bring you to the three misconceptions or confusion which is that there's confusion about biological implications of death, understanding the legal status of brain death and understanding that brain death and organ procurement are separate. This has come out in two community engaged ethics committees. This slide just points out that these were diverse by both institution standards. They went through a process by which they were educated and deliberated over brain death including viewing videos of a 50 year anniversary of the Harvard Criteria Conference that was held through the Harvard Center for Ethics to which the public and media were invited but there was very little participation by either groups. This group upheld many of the things that we've seen in the public refusals cases as well as the legal cases with the ideas that brain dead bodies can gestate a fetus, heal a woman's heart, a body in a morgue can't do that. So how are we expecting people to believe that these two are the same things and the idea that I think the idea of death is becoming on the cusp of being a moving target. While opting out of the concept of brain death was not felt to be appropriate by either committee or requiring consent, there was unanimous grief about the concept of racial bias in medicine and that this bias was overlaying many of the controversies and needed to be addressed before trying to apply any uniform definition of death. Public deliberation or this idea of education and then deliberation by a group is a well established framework for engaging public discourse on complex issues and I think suitable to the concept of brain death. How do you authentically engage the public? I'll give a few tips and then I'm going to conclude. The first is to acknowledge that there is a potentially compounding effect that undermines a public trust when the process excludes the public and so we have to acknowledge that we've done that, be honest about that and begin to engage. Inclusive deliberation committees must avoid the perception that a non-diverse community sets the standards, advocates then for codification of those standards and then turns to the law as a defense to apply them to individuals that don't believe in them. Use of public deliberation processes as I've suggested, open meetings to the public with targeted invitation to groups within the community that have important perspectives to share. To practice epistemic and cultural humility as providers, as ethics consultants, as legal scholars if you're participating in legal deliberation and to avoid homogenization or the idea that there's a singular viewpoint that can prevail. I think public perspectives from non-dominant views must somehow be incorporated into policy. If you incorporate processes that are the same across 50 states, you'll have consistent definitions of death but we may need to consider that across all states we may need some form of accommodation whether it's in the way of time or something else that accomplishes what some of these minoritized groups are suggesting that they need. And then we need transparent education, readily available policies and procedures for appeal and then provide an opportunity for public comment on these policies. Finally we need honest dialogue and that begins with dialogue about what the initial motivations were for determining a definition for brain death. Those two motivations were to relieve the use of life-sustaining therapies in situations in which the medical community did not feel they were beneficial and two, to provide for additional organs for transplantation. We have to think about the fact that neither of these are patient-directed goals. We need to be transparent about that and transparent about the need for increased organs for donation. And if we educate and increase this transparency, I think we'll build public trust over time. Thank you.

racial disparities

brain death determination

trust in medical establishment

objections to brain death determination

minority communities