Who supports the organ donor? Understanding donor mental health
When we think about organ transplantation, the conversation almost always centres on the recipient, the person waiting, the person whose life may be transformed, the person whose survival is at stake. But there is another story running quietly alongside it. The story of the donor.
Whether you are considering becoming a living donor, have already donated or were unable to proceed with donation for medical or personal reasons, the psychological impact can be profound, complex and long-lasting. Yet mental health support specifically for donors remains conspicuously absent, not just from public discourse, but from clinical follow-up pathways and therapeutic spaces.
In my own clinical practice, I have worked with clients navigating the organ donation journey in three directions: those who went on to donate, those for whom the process did not reach surgery and those who went through the surgery and were unable to donate. What I observed consistently across the three experiences was this: the emotional weight of the donor experience is rarely acknowledged, rarely named and rarely treated. This article is for those whose story has remained unspoken.
The silent emotional weight of being a donor
Globally, over 139,000 organ transplants are performed each year, with living donors accounting for a significant and growing proportion (Global Observatory on Donation and Transplantation, 2022).
Choosing to donate an organ is widely described as an act of extraordinary generosity. And it is. But generosity does not cancel out complexity, and the two can, and frequently do, coexist.
Donors commonly navigate a constellation of emotions that exist simultaneously and often in tension with one another: fear about surgery and physical risk; pressure, whether internal or external, to be the person who says yes; guilt when hesitation arises; anxiety about the recipient's outcomes; and significant identity shifts both before and after the donation process.
A 2023 systematic review by Cazauvieilh and colleagues, published in Transplant International, found that while quantitative measures often show improved quality of life following donation, qualitative studies reveal a more complex picture, one in which donors describe a necessary "renegotiation of identity, roles and relationships" that follows the act of donation. The review concluded that living donation impacts the donor's life, whether the transplant is ultimately successful or not (Cazauvieilh et al., 2023).
A broader systematic review of 62 peer-reviewed studies found post-donation depression rates of 0-46.9% and anxiety rates of 0-66.7% across kidney and liver donors, figures that, while wide ranging, underscore the significant psychological variability of the donor experience (Ong et al., 2021).
This is not a contradiction. It is a reflection of the human nervous system responding honestly to high stakes, emotionally laden medical decisions that involve not just the body, but identity, relationship and meaning.
When the body and the mind are both in the room
Organ donation is not simply a decision. It is a visceral, embodied experience, one that touches the nervous system, the stress response and the brain's emotional architecture long before any surgical intervention takes place.
From a neurobiological perspective, anticipating major surgery activates the brain's primary threat detection system, the amygdala, which processes fear and uncertainty and initiates the body's fight, flight, freeze or fawn response (LeDoux, 2000). This triggers increased cortisol production via the Hypothalamic-Pituitary-Adrenal (HPA) axis, heightening vigilance, disrupting sleep, amplifying emotional sensitivity and, in sustained form, suppressing immune function (McEwen, 2007).
Simultaneously, the prefrontal cortex, responsible for executive reasoning, moral processing and decision-making, is engaged in weighing risk, consequence and relational obligation. The result is a neurologically real tension between the felt emotional self and the reasoning self.
You may find yourself holding all of this at once:
- "I want to do this. It is the right thing."
- "Something in me is frightened. Something in me is not sure."
- "Why can I not simply feel certain, when this matters so much?"
None of these responses is irrational. None of them is wrong. They are the honest output of a nervous system navigating one of the most significant decisions a human being can face.
The psychology of obligation, identity and relational pressure
For many donors, particularly those donating to a family member, the decision does not feel like a free choice in the conventional sense. It may feel like an expectation, a given, a conclusion that was always inevitable from the moment the diagnosis arrived.
This connects to well-established psychological concepts of relational obligation, attachment and identity fusion. When someone we love is seriously unwell, our sense of who we are can become deeply entangled with their survival. The question "Can I help?" may quietly become "Can I refuse?"
Research in health psychology confirms that family-based donation decisions are frequently influenced by perceived duty, emotional closeness, fear of regret and the desire to preserve relational bonds, rather than by a process of purely autonomous, rational choice (Tong et al., 2012). The decision may be arrived at not through deliberation, but through a sense of inevitability shaped by love and loyalty.
From a person-centred therapeutic perspective, this matters enormously. Carl Rogers' concept of conditions of worth, the implicit messages we receive about what we must do or be in order to remain loved and accepted, can be powerfully activated in the context of organ donation (Rogers, 1961). When a donor feels that saying no would make them less of a parent, sibling, partner or friend, that fear is not weakness. It is an attachment response.
Clinically, I have observed that donors who were most at peace with their decision, regardless of whether it proceeded to surgery, were those who had been given the genuine psychological space and support to arrive at their choice. Not to perform willingness, but to genuinely explore it.
The goal of therapy in this context is not to change your decision. It is to ensure the decision is truly yours through a safe and supportive therapeutic process.
When the transplant does not go ahead
One of the most psychologically significant and least discussed experiences in the donor journey is the experience of a transplant that does not proceed.
This may occur because of medical incompatibility identified during assessment, a deterioration in the recipient's condition that makes surgery impossible, a complication found in the recipient's biology when surgery is in progress or a personal decision to withdraw, at any point in the process. Each of these pathways carries its own distinct emotional signature.
The emotional landscape of a withdrawal or non-proceeding can include:
- profound guilt – the sense of having failed the person who needed you
- complicated grief – mourning an opportunity to help that has been lost
- a disorienting mixture of relief and sadness that the donor may feel unable to acknowledge
- ongoing anxiety and hypervigilance about the recipient's health
- self-blame that is rarely voiced, because 'nothing happened'
Research indicates that unsuccessful or withdrawn donation processes can produce complex emotional responses, including prolonged grief, unresolved guilt and identity disruption (Massey et al., 2017). Yet because no transplant occurred, these experiences are frequently minimised, both by others and, critically, by the donor themselves.
In my clinical experience, this is one of the most isolating aspects of the non-proceeding donor's experience. The absence of a visible event, no operation, no scar, no obvious moment of loss, can make the internal experience feel illegitimate. But the nervous system does not distinguish between physical and psychological wounds. Both require acknowledgement, processing, support and care.
The neuroscience of stress, delayed responses and recovery
The transplant process, whether completed or not, places the human body under significant and sustained physiological stress. Chronic uncertainty, a defining feature of the donor assessment period, activates the HPA axis, leading to elevated cortisol levels, disrupted sleep architecture, impaired immune function and increased emotional reactivity (McEwen, 2007).
Following surgery, donors may additionally experience fatigue during physical recovery, altered body perception in response to what has been given, and a form of emotional dissonance, the cognitive and felt senses of the experience not yet aligned.
Neurobiologically, this explains a phenomenon that many donors describe and that clinicians often underestimate: the delayed emotional response. A donor may feel composed, even elated, in the immediate aftermath of surgery and then encounter significant emotional waves weeks or months later. This is the nervous system completing the processing that was suspended during the acute phase of threat and medical focus.
A 2021 review published in MDPI Transplantology found that organ donation produces marked deteriorations in both physical and mental health and well-being in the short term, and highlighted the financial and relational burdens that compound donor distress in ways that standardised medical follow-up routinely fails to capture (Foo et al., 2021).
Why donors might not seek support and why this needs to change
Despite the psychological complexity that research documents consistently, many donors do not access mental health support. In clinical and sociological terms, several patterns explain this.
The most common is a form of self-silencing: the belief that because the donor chose to give, they have forfeited the right to need. The narrative of the organ donor is culturally constructed around generosity and selflessness, and within that narrative, there is little room for the donor's own distress. To need support, in this framing, can feel like a contradiction of the role.
Other barriers include:
- the belief that support is really for the recipient, who has more to lose
- social pressure to appear strong, grateful and uncomplicated
- the absence of structured psychological follow-up in many transplant pathways
- lack of awareness that therapy exists as a space specifically for this experience
This gap is not merely anecdotal. A 2024 survey of US transplant programmes found significant inconsistency in psychosocial follow-up practices, with no standardised requirement for post-donation mental health support at the majority of centres (Clifton et al., 2024). A comprehensive narrative review published in Discover Mental Health in 2025 concluded that supporting initiatives to enhance psychosocial care for donors is essential and that the healthcare system must be better equipped to meet donors' diverse needs (Adeyemi and Okonkwo, 2025).
The system, in short, is not yet adequately equipped, which makes the availability of independent therapeutic support outside the medical pathway all the more important.
What therapy offers that medical follow-up cannot
Therapy offers something distinct from the transplant clinical pathway: genuine, unhurried psychological space. Not space to review wound healing or monitor blood pressure. Space to explore what the experience has meant, what it has cost and what it has changed.
Every person brings their own meaning to their experience, and the therapist's role is not to interpret that meaning from the outside, but to support the client in discovering it from within. Carl Rogers described the core conditions of therapeutic change as empathy, congruence and unconditional positive regard (Rogers, 1961). For a donor who has been performing strength and gratitude to the people around them, the experience of being genuinely received, without the need to manage another person's response, can itself be profoundly healing.
Neurobiologically, emotionally safe therapeutic relationships support downregulation of the threat response system. The experience of feeling genuinely understood, what neuroscientist Matthew Lieberman describes as the regulatory effect of affect labelling, or putting feelings into words, reduces amygdala activation and engages the prefrontal cortex's capacity for reflection and integration (Lieberman et al., 2007).
In therapy, a donor can:
- explore ambivalence without the need to justify or resolve it immediately
- name emotions – guilt, fear, relief, grief, pride, anger, that have had nowhere to land
- examine the relational dynamics that shaped their decision, with curiosity rather than blame
- reconnect with their own needs and sense of self, which may have become secondary to the transplant process for months or longer
- process a non-proceeding experience as the genuine loss that it is
- integrate the experience of donation – physical, emotional and existential into a coherent sense of self
This work does not require a diagnosis. It does not require that the experience be classified as trauma, though for some donors it may meet that threshold. It requires only that the donor's story be acknowledged as worthy of attention, which it always is.
A note to those who are still deciding
If you are currently in assessment for living donation or are weighing the possibility, this article is not intended to discourage you. Living donation is a remarkable act, and the outcomes for recipients can be genuinely life-giving.
What this article does argue, firmly, is that your psychological well-being matters throughout this process, not just your physical suitability. You are entitled to explore your feelings about donation with a professional who has no stake in your decision. You are entitled to take the time that your nervous system, not just your medical timeline, requires. And you are entitled to change your mind at any point, without that decision defining you.
The organ donation conversation in the UK is growing. In 2024/25, 964 adults donated a living kidney, a figure that represents extraordinary generosity (NHS Blood and Transplant, 2025). Each one of those donors has an inner story that deserves to be held with the same support and care they extended to someone else.
Whether the transplant went ahead or not, whether you are a donor who feels proud and at peace, or a donor who is quietly struggling with something that feels impossible to name, there is a story within you that deserves to be heard.
Therapy is not about revisiting what you did or did not do. It is about understanding your experiences from the inside. It is about supporting your mind and your body to find a sense of integration, clarity and genuine calm, not the performed calm of someone who feels they ought to be fine, but the felt calm of someone who has been truly seen.
You gave something significant. You are allowed to need something in return. Why not explore whether therapy might support you through your transplant donor journey
References
Adeyemi, N. and Okonkwo, G. (2025) 'A narrative review on the psychosocial domains of the impact of organ transplantation', Discover Mental Health, 5(1), article 42.
Cazauvieilh, V., Moal, V., Prudhomme, T., Pecoraro, A., Piana, A., Campi, R., Hevia, V., Territo, A. and Boissier, R. (2023) 'Psychological impact of living kidney donation: A systematic review by the EAU–YAU Kidney Transplant Working Group', Transplant International, 36, article 11827.
Clifton, E., Winder, G. S., Lentine, K. L., Zimbrean, P. C., Yadav, A., Rubman, S., Kalil, R., Kumar, V., Prashar, R., Gan, G., Deng, Y., Joyce, M., Holmes, R., Laflen, J., Bakhai, D., Liapakis, A., & Doshi, M. D. (2024). Psychosocial Evaluation of Living Kidney Donors: A Survey of Current Practices in the United States. Transplantation, 108(11), e382–e389. https://doi.org/10.1097/TP.0000000000005095
Foo, M., Sreekumar, S., Goh, Y.S., Luo, X., Kow, A.W.C. and Bonney, G.K. (2021) 'Mental health and well-being of solid organ transplant donors: The forgotten sacrifices', Transplantology, 2(3), pp. 261–277.
Global Observatory on Donation and Transplantation (2022) Transplant activity data. Available at: http://www.transplant-observatory.org
LeDoux, J. (2000) 'Emotion circuits in the brain', Annual Review of Neuroscience, 23, pp. 155–184.
Lieberman, M.D., Eisenberger, N.I., Crockett, M.J., Tom, S.M., Pfeifer, J.H. and Way, B.M. (2007) 'Putting feelings into words: Affect labeling disrupts amygdala activity in response to affective stimuli', Psychological Science, 18(5), pp. 421–428.
Massey, E.K., Kranenburg, L.W., Zuidema, W.C., Hak, G., Erdman, R.A.M. and Hilhorst, M.T. (2017) 'Encouraging psychological outcomes after living kidney donation', Transplantation, 101(8), pp. 1907–1915.
McEwen, B.S. (2007) 'Physiology and neurobiology of stress and adaptation: Central role of the brain', Physiological Reviews, 87(3), pp. 873–904.
NHS Blood and Transplant (2025) Organ donation and transplantation activity report 2024/25. London: NHSBT.
Ong, J.Q.L., Lim, L.J.H., Ho, R.C.M. et al. (2021) 'Depression, anxiety, and associated psychological outcomes in living organ transplant donors: A systematic review', General Hospital Psychiatry, 70, pp. 51–75.
Rogers, C.R. (1961) On becoming a person: A therapist's view of psychotherapy. London: Constable.
Tong, A., Chapman, J.R., Wong, G., Kanellis, J., McCarthy, G. and Craig, J.C. (2012) 'Screening and follow-up of living kidney donors', American Journal of Transplantation, 12(8), pp. 2117–2123.
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