“It's My Wish, We Need This Program”: Qualitative Reflections From People With High-Grade Brain Cancer Consenting to Postmortem Brain Donation

Abstract

PURPOSE

Brain tissue donated in the postmortem setting is a driving resource for brain cancer research and a source of hope in the face of dismal survival rates. As demand for tissue increases, the need to understand the impact of these programs on prospective donors becomes paramount. Little is known about the experience of consenting to rapid autopsy after a terminal brain cancer diagnosis, and clinical teams favor caution when approaching patients for consent for fear of causing distress. Characterizing the human experience of consenting to postmortem brain donation will provide an evidence base for compassionate integration of brain donation consent into clinical pathways.

METHODS

We interviewed 21 prospective donors who had expressed interest or had consented to postmortem brain donation. A thematic analysis with narrative synthesis was conducted on the transcripts of the qualitative interviews.

RESULTS

Four themes were identified within the data: (1) Meaning, purpose, and donor expectations, (2) embracing the identity of a donor and integrating donation into personal narrative; (3) regaining control and defining legacy; and (4) the role of stoicism and humor in protecting emotional well-being and family relationships during donor discussions.

CONCLUSION

The sentiments expressed in the data indicate an overwhelmingly positive impact associated with consenting to brain donation. Consenting to a postmortem brain donation program can instill a sense of purpose and meaning while restoring a sense of control for those facing mortality. These data indicate that the prevailing caution and reluctance in consenting a patient to brain donation may be misplaced, preventing patients and their families from engaging with a program that can provide an invaluable source of hope, empowerment, and legacy.

INTRODUCTION

Brain cancer is a debilitating disease that can not only lead to mortality in a devastatingly short timeframe, but also has the ability to destroy a person's autonomy and sense of identity.¹ The stagnation of clinical breakthroughs and underwhelming outcomes of the clinical trial pipeline are largely attributed to an insufficient understanding of brain tumor neurobiology.² To bolster translational research efforts, the demand for brain biobanking programs—particularly postmortem donation programs, is increasing in number. Despite increasing demand, a prevailing caution has been noted within the literature—grounded in concern for the negative impact that conversations around brain donation might have on patients.³ As such, rich and robust qualitative data attesting to the positive human experience that can be afforded by brain donation are essential for catalyzing a cultural shift within the clinical community.

CONTEXT

• Key Objective

• To characterize the lived experience of consenting to donate one's brain in the postmortem setting after a brain cancer diagnosis.

• Knowledge Generated

• Consenting to a postmortem brain donation program has the potential to instill a sense of purpose and meaning while also restoring feelings of control. Consenting to donate can affirm identity and reshape personal narratives, providing comfort and a source of emotional well-being for donors and their families.

• Relevance

• There is evidence for clinical teams that are inherently cautious or reluctant to raise postmortem research opportunities with patients and their families to reconsider their stance. These data provide grounds to suggest that involvement can provide invaluable hope, empowerment, and a source of legacy to patients and their loved ones.

Foundational qualitative literature exploring organ donation for transplantation may yield insight into the lived experience of brain donation, particularly with respect to living donation and the importance of autonomy.⁴ Data indicating the prevalence of decisional regret—both for agreeing to or declining to donate organs for transplant—also raised key issues for consideration in this context.^5,6 The notion of decisional instability, particularly in living donors, may underpin prevailing clinician caution in raising the topic of donation.⁷ That said, while insights into brain donation after a brain cancer diagnosis could be extrapolated from this context, the reality of impending mortality and the unique psychosocial experience of a brain cancer diagnosis⁸ distinguish these two groups. As such, understanding the nuances and unique perspectives of people who have a terminal brain cancer diagnosis is essential for meeting their needs.

Postmortem brain biobanks require attentive consideration of ethical, legal, and social issues, complicated by existential hurdles grounded in the brain's association with self and identity.^3,4 Given the unique context associated with brain cancer and the devastating lived experience, many of these considerations are amplified^9,10 such as consent in the setting of impaired executive function and the ever-present threat of cognitive decline.¹¹ For people with advanced glioma, the timeline for acceptance of diagnosis and mortality before conscious decision making can be brief¹² and is underpinned by a need to ensure that end-of-life plans, such as the decision to donate one's brain, are addressed early. This often means that the decision to donate one's brain occurs soon after diagnosis or during treatment, rather than after disease progression or the early terminal phase.¹² This expedited timeline presents considerable psychological challenges for patients and their loved ones, potentially raising concerns around the potential for decisional regret. Understanding the ways in which patients cope with these expedited timelines for end-of-life decision making is essential for clinical teams. Unique insights can be gained by exploring the experience of those consenting to postmortem brain donation.

This study aims to explore the reflections and experiences of people with terminal glioma who have expressed interest in or consented to a postmortem brain donation program. Given the utility of qualitative methods for characterizing human experience and exploring depth of perception,²⁴ our investigation is qualitative in nature—allowing those with a lived experience to express sentiments and reflections in their own words.

As outlined above, qualitative research in this setting is complicated by challenges associated with cognition and communication. Rather than circumventing these challenges, this study accommodated them and aimed to explore the impact they have on identity, personal affect, communication needs, and maintaining close relationships. These data can guide clinical teams regarding how to consent patients for brain donation, allowing them to inform their practice by real-worth experiential data attesting to donor needs and lived experiences of impact.

METHODS

Participants and Setting

Participants for this research study were recruited in conjunction with the Mark Hughes Foundation (MHF) Brain Cancer Biobank, which accepts consent from any donor who has been diagnosed with a high-grade, primary brain tumor. Any potential donor who was referred to the MHF donation program or who made self-directed enquiries was eligible to participate in this qualitative research study—provided that they were deemed lucid enough to do so by their treating team.

Procedure and Measures

Consent to participate in this qualitative project was offered at the same time as consent to brain donation, with biobanking staff conducting the formal process of consent to both projects simultaneously and face-to-face. It is noted that declining consent to this qualitative research project did not affect eligibility for consent to brain donation.

The semistructured interviews used a participant-centered approach, allowing the interviewer scope to follow up on comments or statements relevant to individuals. The interview guide focused on views and feelings through each step of the consent process, their decision-making process, and their rationale and hopes for outcomes, and concerns about potential logistical challenges. Interviews were conducted in-person at the time of consent or via telephone at a later time. In some instances, a partner or caregiver/support person was present in the interview. The interviews were recorded and then transcribed. The interviews were conducted between March 2021 and July 2024 by the biobanking and clinical research manager (C.G.) who is responsible for consenting potential brain donors and their next of kin (NOK). Data collection continued until it was determined that the sample of participants provided rich breadth and depth for analysis, rather than saturation for thematic analysis.¹³

Interviewer Perspective

It is acknowledged that the interviewer (C.G.) established connections and developed a rapport with many of the participants. For the majority of cases, the interviewer was also present at a later time during the donation itself (noting that some participants remain alive at the time of manuscript preparation). As such, it is recognized that the researcher is personally present in the study and is committed to the positive value of brain donation—contributing personal experience and insights to the interpretation of results in this phenomenological study.

Analysis

Analysis was facilitated using NVivo (Version 12 Pro, QSR International) and conducted by two authors (C.G. and M.C., Denver, CO). All responses were coded and reflexively discussed after which a reflexive thematic analysis with narrative synthesis was conducted to explore the sequential organization of events and understand the components of each theme within the wider brain donation paradigm. This process was guided by the methodology of Braun and Clarke,¹⁴ and data were coded based on key words, phrasing, and expressed sentiments. These codes were then grouped based on parallels in language and used to construct themes which could be illustrated in narrative form with the use of demonstrative quotes. It is recognized that both authors interpreted through a personal lens with one (C.G.) highly present in the data because of direct involvement in the consent and facilitation of donation and the other (M.C.) external to the program.

Ethics Approval

Ethics approval was granted for this study by the Hunter New England Human Research Ethics Committee (HNEHREC 2018/ETH00261). Full, informed consent was obtained from all participants.

Consent to Participate and Publish

Informed consent was obtained from all individual participants included in the study. This consent extended to consent for publication.

RESULTS

A total of 21 donors consented to participate in the study. These participants were offered participation when they expressed interest in the brain donation program, and of those who expressed interest, 100% provided consent to the qualitative study. It is noted that as a major rural referral hospital, a high volume of patients with glioblastoma pass through our center; however as participation in brain donation is not actively sought, it is difficult to know what proportion of patients with this diagnosis would be in favor of participation.

Table 1 details study participation and demographic data. Occupational categories were informed by ISCO-08, though not strictly followed to ensure that heterogeneity was adequately captured.

TABLE 1.

Demographic Data

Demographic	Range/Category	No.
	20-30	0
	30-40	3
Age, years	40-50	1
	50-60	8
	60-70	6
	70-80	3
	Professional	6
Occupation	Skilled trade	5
	Technician	7
	Not documented	3
Sex	Male	13
	Female	8
	Prefer not to say	0

Demographic Data

Three participants who initially presented as lucid before the interview deteriorated cognitively (aphasia, word finding difficulties, or confusion) during the process because of fatigue (Donors 09, 15, and 18). Data collected from all three were included in analysis; however, codes such as “confusion” were used to differentiate these data from data collected in a state of lucidity. As such, limited representative statements from these participants have been included within the results. Determination of lucidity was made by those coding who have backgrounds in clinical trial consent and models of cognitive screening. In cases where it was not immediately clear, clinical members of the research team were asked to review the audio files and assist with a determination.

After a review of the interview transcripts, along with coding and analysis of the data, four key themes were developed: (1) Meaning, purpose, and donor expectations; (2) embracing the identity of a donor and integrating donation into personal narrative; (3) regaining control and defining legacy; and (4) the role of stoicism and humor in protecting emotional well-being and family relationships during donor discussions.

Theme One: “I Don't Mind Dying If I Can Help Others”—Meaning, Purpose, and Donor Expectations

For many donors, there was a clear and repeated sentiment that brain donation was perceived as a gift, bequeathed to future generations of humanity, and an act grounded in altruism (Table 2). This was complemented by a strong aversion to waste, some even suggesting that by avoiding waste they found comfort, clarity, value, and a purpose—a means of helping others. The emphasis on gifting and a somewhat pragmatic aversion to waste aligned with meaningful yet modest expectations for the outcome of their donation. When asked what they thought the outcome might be, donors were realistic and far from grandiose—hoping to play a small role in progressing science or promoting hope rather than the holy grail cure. This suggests a prevailing humility among donors and that while many benefit from knowing that they are contributing or find a sense of purpose, they express these sentiments with tempered realism and poignant appreciation for the role of hope. While expectations are realistic and participants demonstrated a clear acceptance of mortality, when the question was specifically raised, hope for a future cure endures among donors, reflecting the overall positivity and altruism of this patient population.

TABLE 2.

Theme One: “I don't Mind Dying If I Can Help Others”—Meaning, Purpose, and Donor Expectations

Summary Statement	Representative Quote
Brain donation perceived as a gift	Donor 04 “It's no good to me. If it can be of use to science in progressing our understanding of this insidious disease, then it's a no-brainer.”
Aversion to waste and a means of helping others	Donor 08 “Nothing will change if they don't have brains to be able to work on, and it's pointless wasting it. So, give it to someone that can do something with it.” Donor 14 “Well I'm going to get cremated… Why waste a perfectly good vessel for research?”
Modest, realistic expectations with a poignant appreciation for hope	Donor 05 “I hope there's a link in there somewhere… Obviously, we all want a cure to be found, and if I'm in some way one of the links in the chain… maybe I can make somebody else's life a little easier.” Donor 10 “I hope it gives them hope. I hope that we can move forward and find something to help. I know it's never probably going to be, we'll find a cure, but at least we might find out the whys and wherefores and things like that.”
Hope for a cure	Donor 07 “One day there will be a cure for it, well if I can be a bit of a help with the cure, or find out what causes it, that's got to be a step forward.”
Focus on living in the now, not reflecting on death	Donor 05 “I haven't been, oh poor me, why me. I'm still very determined… if I can get up, put one foot in front of the other, I'm here for the hard slog.” Donor 14 “I might be a little bit resigned to what's happened because being given the terminal diagnosis, the best thing I can do is just keep doing what I do. Not, like I said, curl up into a ball.”
Redemption and existentialism	Donor 01 “Part of that passing grade is … if I can use my last thing, literally the last thing I do when I'm dead, is someone can use my death for someone else. That's got to be something.” Donor 10 “I haven't made a lot of good decisions in my life, but I tell you what, filing the paperwork and doing this was one of the best decisions I've ever made. I truly believe that. And I just think it was, after my diagnosis I've made so many… because I was in shock, I've made so many wrong decisions and this one was the right decision…It's probably one of the rare times in my life, I'm proud of myself.”

When asked if consenting to brain donation changed the way that participants consider life and death, many were perplexed by the question. After consideration, the consensus was that individuals prioritized living and focusing on now rather than existential thoughts—a mindset they applied to navigating their diagnosis as a whole. However, existentialism was not entirely absent in the data, and for some, hope took the form of redemption, reflecting on brain donation as an opportunity to achieve purpose, do good, and ensure that they departed life having made the right decisions when it counted most.

Theme Two: “I've Waited Over 50 Years to be Accepted as a Donor and Do Good”—Embracing the Identity of a Donor and Integrating Personal Narrative

Complementing the perspectives and expectations of donors is the way in which these views shape donor identity and can affect overall personal narrative. Participants indicated a broad understanding that research efforts in brain cancer have been insufficient to date and that by consenting to donation, they will be addressing this unmet need and altruistically supporting future generations (Table 3). For many, this aligned with their personal views on organ donation for transplantation and in these instances, brain donation was seen as somewhat of a logical progression given their change in circumstances. Beyond this initial association, many participants expressed deeply personal and formative experiences with death or organ donation, suggesting that their decision was aligned with their ingrained values, morality, and sense of identity.

TABLE 3.

Theme Two: “I've Waited Over 50 Years to be Accepted as a Donor and Do Good”—Embracing the Identity of a Donor and Integrating Personal Narrative

Summary Statement	Representative Quote
Donor identity and personal narrative	Donor 17 “So, I did some research on what I could possibly do to help out in that area…research into brain tumours is very low compared to all the other cancers.” Donor 07 “I just hope that I can save some child from going through brain cancer, or some other person, or it could even be my own grandchildren. I've got 11 grandkids, so it could even be one of them that I might save one day. And I just hope that what I'm doing helps someone.”
Logical progression from views on organ donation	Donor 07 “[my wife] and I have always said that we'll donate any body parts we could. Years ago you just signed your license for it, but now it's more… But we both decided on that for years, if we could help anybody else, we would.
Personal experience with organ donation	Donor 06 “My father donated his eyes, I was always prepared to donate whatever science wanted … whatever someone can get off me, good…I hope someone gets some use out of it. My mother always used to say, someone's out there looking at life through your father's eyes… that always comes back to me. Dad gave something back to society, and I can”. Donor 04 “Growing up, my cousin had cystic fibroses. I remember asking Santa for a doctor's kit for Christmas. And when he delivered that on Christmas morning, I got up and I started to cure my teddy of cystic fibrosis… And when we got into the 1980s, the very first heart-lung transplant was done on a cystic fibrosis patient… So yes, as soon as I was 18, I signed up for organ donation, thinking that no matter when I die at least maybe something good can come of my death.”
Personal loss and the need to take action	Donor 09 “This is something I wanted to do. It didn't really take me long to make the decision… mainly because people in my family have lost their lives. So yes, that was the reason I made the decision.
Gratitude for opportunity presented by disease	Donor 12 “Well, it started off in 1966 when [my brother] was diagnosed… I've been wanting to do something constructive ever since… [to] feel useful. I've waited over 50 years to be accepted as a donor and do good. Help others… I've been wanting to do my bit, to become an organ donor…If I didn't have the disease then I wouldn't be where I am [interviewer: what do you mean by that?] Well, dying for one thing. To donate to Biobank is a good thing. It means the world.”
Helplessness and empowerment	Donor 02 “This was something that I could do to help when I was in such a helpless position… feeling so helpless with how the brain cancer destroys your life… this is one way that I can help to find a cure for brain cancer. Even if it is after I'm dead. Even if it's just donating my brain… if you can't help yourself, you can help someone else. It could still make a huge difference. It's quite empowering to be able to make that decision to help someone else”.

Within this was deep recognition of the value of organ donation and research. For many, this was grounded in personal loss and a desire to take action to prevent further death and suffering—ideals that had shaped the identity of individual participants and would be reinforced by this decision. Taking this further, one participant expressed what could be somewhat perceived as gratitude for their disease—citing that it afforded him the opportunity to fulfill his long-held altruistic mission of organ donation to repay care shown to a relative.

Despite many reflecting that predisease, they were empowered to support research and driven to help others, within the data, an overwhelming sense of helplessness is identified by donors after their diagnosis. For many, this led to a search for some form of empowerment to reinforce an individual's agency and restore identity. Participants expressed that brain donation served this purpose, providing empowerment and allowing them to transition from the identity of a helpless patient to an empowered donor. This importance of brain donation was heightened for those who had been told they were no longer eligible organ donors for transplantation purposes—something they had previously identified as central to their character values. This is a clear insight into the empowering and restorative impact of consenting to brain donation.

Table 3: Theme Three—“I Hope It's a Legacy, I Hope That's What You Call It”—Regaining Control and Defining legacy

Furthering notions of helplessness beyond that of identity, loss of control was a frequently cited challenge for participants with a brain cancer diagnosis—illustrated by a young participant who referenced the devastating loss of autonomy and the strength they gained by being afforded a personal choice (Table 4). This was further demonstrated by participants who discussed the measures they were prepared to take to ensure that brain donation would be successful—placing themselves as active participants in the process rather than passively relinquishing control after decision making and consent. One participant exemplified this through his plan to implement a monitor or alarm to notify family instantly of his death, ensuring that it would not be missed and that timelines would be strictly adhered to. Another referenced her openness to engaging in euthanasia as a personal measure to ensure that her death and subsequent donation could be planned and organized.

TABLE 4.

Theme Three: “I Hope It's a Legacy, I Hope That's What You Call It”—Regaining Control and Defining Legacy

Summary Statement	Representative Quote
Loss of control	Donor 01 “Control is incredibly important… all my control has been taken away… everything from my ability to move, to even people making decisions about what I'm doing. From doctor's appointments and stuff to… just things that you would have been doing now you can't… you keep losing autonomy… And so, the more control that you still have about some things gives you so much strength… again I'll be a blunt on this, but no bastard can take [the choice to donate] off me. It is 100% in my choice… It's within my choice and my decision. It's one of the only few things that are left in my decision.”
Active participants regaining control	Donor 05 “If the Assisted Dying Bill was in and I was coming to the last stages, it would be something that I could do both by implementing that and implementing the donation, so that things could run smoothly, and you have the time to prepare and organise.
Personal autonomy	Donor 03 “I think it's a big decision I can make while I'm still capable and it's my choice. Like I was saying earlier about the ‘Do Not Resuscitate’, and that's my choice. I get to do these things, I'm the one that wants these things”. Donor 15 “I just don't see the point in telling other people just yet. Because I'm still at a stage where I'm breathing, I can talk, and I'm not just laying around and not being able to have a conversation with someone or hiding things from them. So, I just take the days as they come. And if anything is needed to be discussed with friends or anything like that regarding the whole issue, then I'll do it. But I haven't had to do it yet”.
Prioritizing own decisional autonomy	Donor 02 “If someone had a problem with it, I'd think how selfish are you?” Donor 03 “I basically just said I don't want to hear any more of it, this is my decision, and you'll respect that.”
Need to be remembered	Donor 06 “As long as someone gets some benefit out of it, I don't want to be on this earth for 60 or 70 years and then leave with nothing, not a trace of me behind”. Donor 08 “I never really thought hard on it, to be honest. But that has changed. So much so, I'm tweaking things in the shed so there's things there for the grandkids to play [with] after I'm not here anymore. But yes, it's difficult. It's difficult. Having a legacy, it never worried me before. But having things left behind, I worry about that, to be honest”.
Fulfilling life's purpose	Donor 05 “I believe I have a role to play. I don't know what it was, but at the end of the day, if my role in developing brain cancer is that I can play a part in maybe being one that helps find a cure through my donation. Then that would be pretty epic”.
Legacy	Donor 02 “I like to think that they could know that their daughter or their sister, that she had been a part of trying to find a cure for brain cancer. And I feel like that's something really special to come out of this sad situation… Like you'd be leaving a legacy behind or something”. Donor 06 “I hope it's a legacy… I don't want a hero or a bronze statue or anything like that. I just want [my wife] to say, well someone's getting some benefit out of [my] brain… as long as it goes to good use”. Donor 04 “Yes, I'm just happy knowing something useful can come of my death, of value to humanity, understanding of this disease that's killing so many young people… amongst the grief, my son will know that something positive came of my death”.

This speaks to the ongoing emphasis of personal autonomy, which is referenced frequently within the data. Overwhelmingly, participants identified the personal importance of retaining the ability to make choices about their own care and end-of-life arrangements, emphasizing the need to communicate on their own terms. Furthermore, despite expressing concerns for their loved one's well-being, many expressed that given their prognosis, they felt justified in prioritizing their own decisional autonomy and need for control above a loved one's potential discomfort. Alongside the value placed on autonomy, the need to be remembered is repeated within the data. For some, it is about making an impact on humanity, whereas for others, it is maintaining a presence in the memory of family.

For some, brain cancer is not seen as a barrier to achieving their life's purpose, but rather a means of fulfilling it. This contributes to diverse yet prevailing references to legacy, which are prominent throughout the data and widely underscore the findings of this body of research. Legacy is a key representation of the value that participants place on postmortem brain donation, addressing empowerment, control, and agency as outlined above. A brain donation legacy is seen as a comfort for many, providing a sense of purpose, consolation for loved ones, and a source of pride for those who remain.

Theme Four: “Well…They All Laughed Thinking Who'd Want My Brain?”—The Role of Stoicism and Humor in Protecting Emotional Well-Being and Family Relationships During Donor Discussions

Varying communication styles used by participants were identified within the data. This had implications for the ways in which individuals expressed identity or conveyed wishes and expectations. Understanding the choices made by donors when using a communication style yielded insight into how donors managed their own well-being and preserved relationships. Referring to the likely short course of their disease and the need to make decisions while cognitively able, one participant voiced that a pragmatic or stoic approach to communication and internal dialogue helped to better manage negative emotions and focus on practicality (Table 5).

TABLE 5.

Theme Four: “Well…They All Laughed Thinking Who'd Want My Brain?”—The Role of Stoicism and Humor in Protecting Emotional Well-Being and Family Relationships During Donor Discussions

Summary Statement	Representative Quote
Communication styles and stoicism	Donor 14 “I was actually saying to my wife this morning that I haven't been overly emotional…right from the day that I was told what's going on. I've had good days and bad days, but I haven't done the whole, woe is me and crawl off into a corner. I think that's let me handle things a lot better… Then when something like this comes up on the radar, I can just take it on board without any emotion”.
The role of humor	Donor 14 “I've got a pretty wicked sense of humour through this thing. I think that's what has helped us too. And it may rub some people the wrong way thinking I'm not taking it seriously, but it's the way you deal with things. Like with everything in life, you do it [on] your terms and it just sounds like, it is a running gag in the house. A running joke”.
Humor evident during interviews	Donor 06 “Whoever gets a piece of my brain, I hope they get the cheeky bit. Let's go and trip that bloke up… just a cheeky part of me.” Donor 11 “Somebody may as well have it, because it's almost brand new, it's never been used!”
Humor and optimism	Donor 08 “I've done a little bit of travel, but it will be different to go, I don't know, to America, I've never been to America. I never wanted to go to America, mind you. But yes, something different”.
Humor and the desire to protect loved ones	Donor 14 “The only thing I would be worried about is as long as it was nice and smooth for [my wife] … That's my focus in life is making sure that there's nothing coming from left field in this. I just want to make sure that everything is good with it, for her”. Donor 04 “I wanted to know absolutely everything that's going to happen, so that if [my son] does ask me a question I can answer it honestly. I've been trying to avoid telling him anything that's a maybe… because with ‘mights’ and ‘maybes’, they just leave the door open for imagination, so it's best to work in explicit information.
Impact of brain donation on loved ones	Donor 21 “I don't think it impacts on them. From day one, I did sugarcoat stuff. A lot of stuff. I don't think there's any need to sugarcoat this”.
Humor to deflect grief	Donor 12 “I've done everything that I can to ease the passing. It'll be hard for my husband, wake up with a stiff next to him”.

While this stoic approach to receiving news and preparing oneself to make decisions was cited by many, it was accompanied by consistent demonstrations of humor in communication styles—suggesting that humor can play a key role in managing interactions and preserving relationships. Reinforcing this inference, a participant explicitly cited the use of humor as a tool or coping mechanism for himself and his family, while noting that humor could be disarming or disconcerting for those outside his immediate circle. Not only was humor explicitly cited as a tool for maintaining effective communication and coping with the burden of their diagnosis, but its use was also evident during the course of the interviews. In emotional moments, or when the tone of the interview became bleak, humor appeared to be used by participants to relieve tension for both their own well-being and the interviewer and loved ones who were present. It was noted during analysis that once humor had been used, the interview continued with ease and a gentler tone—especially when acknowledged or reciprocated by the interviewer. This suggests that humor can be used by donors as a tool to protect loved ones during challenging conversations regarding end-of-life plans, such as consent to brain donation. For one participant, humor was even used to inspire hope, used in a facetious manner when one donor spoke of living on through his donation and expressing excitement at the travel that lay ahead of him in the event his samples were shipped internationally.

The use of humor as a strategy for maintaining communication with loved ones and protecting them from anticipatory grief highlights the ongoing concern many donors feel for their loved ones. While reflecting on their own experiences, participants were highly cognizant of the impact that consenting to brain donation might have on their loved ones, with minimizing negative impact a priority for many. Varying perceptions of the impact brain donation might have on loved ones and the subsequent need to mitigate were apparent. One participant identified a need to shield their loved ones from hurt, yet did not perceive the process of brain donation as the one likely to cause distress.

In contrast to this, another identified the potential impact—yet deflected with humor in recognition that grief is unavoidable. In this instance particularly, the use of humor was not only used to change the tone of the conversation, but it also appeared that the participant reveled in the momentary shock of the interviewer when the comment was unexpectedly made. The joy this reaction bought to the participant indicated the ongoing value many place on their ability to maintain character, in this case that of the joker—demonstrating that despite this disease attacking their mind and threatening their sense of self, many are comforted by the thoughts of maintaining their own unique identity.

DISCUSSION

This qualitative research project identified four key themes that centered around donor expectations and the search for meaning, donor identity, and personal narrative, regaining control through legacy and the role of humor and stoicism in maintaining relationships during donation discussions. These themes provide key insights into the ways in which donors receive information and interact with brain donation protocols and the impact that these programs can have—affording insight for clinicians and biobanking professionals facilitating these programs.

It is noted that all participants in this research were in favor of brain donation—having sought out the program or been referred by a member of their team. While there was one participant who did not fulfill his donation, this was due to delays in governance processes between states and not donor willingness. Insights from those who undertake an informed consent process but choose not to consent or those who decline to engage would enrich this body of work and allow further characterization of the lived experience of consenting to a postmortem brain donation program.

The sentiments expressed in the data indicate that an overwhelmingly positive impact is associated with consenting to brain donation and the reasons underpinning this warrant further exploration. A desire to give back or repay was prominent within the data, and there appears a strong association between organ donation for transplantation and organ donation for research, with many describing their decision as closely aligned with a lifelong commitment to organ donation and a reflection of their character. Transplantation literature has long favored altruism as the driving force for consent to organ donation; however, perhaps solidarity is a more accurate motivation for research donations.¹⁵ Solidarity in the context of bioethics can be defined as “sympathy mediated by belief in a common project and grounded in notions of common good, empathy and trust.”¹⁵ This definition, which differs from altruism, seems especially relevant when the motivations of brain donors are explored within the data. It was somewhat surprising how many donors expressed personal and formative experiences with illness, death, or organ donation. These may serve as a distinguishing factor between organ donors for transplantation and postmortem brain donors who are committed to overcoming this insidious disease and sharing solidarity with those who had succumbed or would be diagnosed with brain cancer in the future. Given how frequently donors cited personal narrative and past encounters with illness or organ donation, this research suggests that clinical teams conducting consent conversations should allow adequate space when discussing about consent to understand the personal motivations and contextual experiences of donors to guide decision making. Allowing room for reflection on personal values and the ways these values affect their sense of identity prediagnosis may allow donors to restore or retain their notion of identity, improve their sense of control, and fulfill a need for meaning or purpose post diagnosis.

The need for an individualized approach to communication is not a novel concept in clinical practice.¹⁶ Styles of communication evident within the data were reflective of both individual character and a conscious choice to protect relationships during this challenging period of their lives. Pragmatism, stoicism, and a grounded sense of reality were abundantly apparent, and their prevalence in the data suggests that these ideologies may be a core element of donor's internal monologue as they navigate end-of-life decision making under expedited timelines. Consequently, it can be suggested that the stoic and pragmatic effect of donors serves as a coping strategy affording them a sense of decisional clarity when contemplating brain donation and that clinicians should not be deterred or see it as a form of disengagement with the conversation.

The role stoicism may play in internal dialogue during decision making is somewhat offset by the presence of humor and the role it plays in interpersonal communications. Humor has been described as an enabler of communication,¹⁷ and the use of humor in terminal illness is well-identified as a coping strategy, normalizing sensitive issues.^18,19 This was verbalized, almost verbatim by one of our participants who cited humor as his coping strategy and crucial for preserving relationships within his home. While disarming at times, humor is an invaluable tool for building rapport with patients and its presence in brain donation conversations may be particularly pertinent in the context of a disease that impacts higher order function, personality and communication. Indeed, these findings suggest that high value is placed on the enduring ability to maintain interpersonal connections and to exhibit an intact demonstration of personality—which for many includes their sense of humor.

Research indicates that some health care providers remain concerned around the potential of humor to undermine professionalism²⁰ and concern regarding the appropriateness of humor in end-of-life or sensitive conversations should not be disregarded. While the inference is made cautiously, this research suggests that a strengthened interpersonal connection is valued by potential donors and that solidarity and a shared sense of humor can be at the heart of this. The role humor may play in nurturing interpersonal connections and the parameters for use requires further investigation; however, these preliminary data and the wider literature suggest that clinicians should be guided by the patient and need not necessarily shy from reciprocating when humor is used.¹⁷

Finally, it is interesting to note that expectations expressed by donors provide a contrast to data previously collected by the authors related to the lived experiences and expectations of NOK caregivers supporting a loved one to donate.^21,22 In previous work, we have noted that NOK places high emphasis on hope for a cure, a finding supported in other tissue donation settings.^3,23 While references to a cure exist in this body of work, expectations tended to be realistic—identifying that research is likely to be long-term and hoping that their contribution will play a small part. Whether this contrast is due to the acceptance of mortality by the donor and humility stemming from existential thoughts around mortality or due to another factor remains to be seen. While these data do not provide the answers, the findings suggest that within the local program, informational needs have been met, and that informed consent has been conducted in an adequate fashion—with expectations mirroring reality.

A key challenge within this study is participant cognition because of disease. Three participants presented as lucid before interviews, but suffered from aphasia, word-finding difficulties, or confusion regarding present dates and events during their interviews. We chose not to exclude these participants given that these challenges are characteristic of the population. Rather, the authors coded these as “confusion” to differentiate from lucid insights. Second, brain tumors are known to cause changes in personality and higher-order functioning, suggesting the possibility that insights may be clouded by disease. This could not be controlled for in this study.

Finally, this study included the perspectives of only those who consented to brain donation—not those who declined. This was due to the nature of recruitment in that participants often self-identify to their treating team or are offered the opportunity to consent after an indication of potential interest. Given the sensitivity of end-of-life discussions, those who are unlikely to consent or who may be distressed by the conversation are not approached for consent. While this has the potential to skew data, it is an unavoidable characteristic of the setting. The authors also recognize that the qualitative lens used by those conducting interviews demonstrated favorable engagement with brain donation protocols and that this may limit the generalizability of the study. Whether this is strictly observed as a limitation lies in a wider conversation regarding the relevance of generalizability as an applicable concept in phenomenologic qualitative research; however, we are mindful of the potential for impact in this study.

In conclusion, the insights of those who have consented to the MHF brain biobank indicate that consented donors experience a sense of empowerment, restored agency, and purpose. Many are comforted in knowing that their decision affords them a chance to establish a legacy, and given their personal experiences and motivations for consenting, the psychosocial value of consenting to postmortem brain donation should not be underestimated. Clinicians have an opportunity to increase the acceptability of brain donation programs and, in doing so, potentiate engagement and the positive impact it affords. These data provide clear testimony of the benefit and power of offering a brain donation opportunity to a patient with advanced glioma.

DATA SHARING STATEMENT

The data sets generated and/or analyzed during the current study are available from the corresponding author on reasonable request.

AUTHOR CONTRIBUTIONS

Conception and design: All authors

Administrative support: Marjorie M. Walker

Provision of study materials or patients: James Lynam

Collection and assembly of data: Cassandra P. Griffin, Melissa A. Carlson

Data analysis and interpretation: Cassandra P. Griffin, Melissa A. Carlson, James Lynam

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

“It's My Wish, We Need This Program”: Qualitative Reflections From People With High-Grade Brain Cancer Consenting to Postmortem Brain Donation

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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