Palliative Care Before Solid Organ Transplant: Providing Support Through an Uncertain Journey

For people living with advanced heart, lung, liver, or kidney disease, solid organ transplantation can offer the possibility of longer survival and improved quality of life. Yet the period leading up to transplantation can be marked by uncertainty, significant symptom burden, repeated hospitalizations, and difficult decisions. Patients and caregivers may be simultaneously preparing for a life-changing transplant while confronting the possibility that they could become too sick to receive one.

This is precisely where palliative care can help.

Palliative care focuses on quality of life, symptom management, communication, and support for patients and caregivers while serious illness treatment continues. In transplantation, this means that palliative care can be provided alongside evaluation, organ-specific therapies, and active pursuit of transplantation.

Waiting for an organ is unlike many other experiences in medicine because the path forward can change quickly. A person's condition may remain stable, improve with treatment, or deteriorate. Transplant eligibility may also change as new medical or psychosocial issues emerge.

Major transplant guidelines reflect this complexity. For example, the Kidney Disease: Improving Global Outcomes (KDIGO) guideline for kidney transplant candidates emphasizes multidisciplinary evaluation and consideration of the patient's overall risk rather than individual conditions in isolation. Similarly, the International Society for Heart and Lung Transplantation (ISHLT) guidelines emphasize comprehensive evaluation and ongoing collaborative care for heart transplant candidates.

Throughout this process, people may experience pain, breathlessness, fatigue, itching, nausea, insomnia, anxiety, or declining function. These needs are not limited to one organ population. Research across solid organ transplantation has identified substantial symptom burden and complex care needs before and after transplant.

Caregivers experience this uncertainty as well. They may be coordinating appointments, providing physical care, managing medications, and preparing for transplant while simultaneously worrying about what will happen if transplantation does not occur.

Palliative care provides an additional layer of support for both patients and caregivers during this period.

Palliative care does not require a person to choose between pursuing transplantation and focusing on quality of life. Both can happen at the same time.

People awaiting transplant often live with symptoms related to advanced organ disease. Palliative care clinicians can help identify which symptoms are most burdensome and develop treatment plans that account for the underlying organ dysfunction.

This is particularly important because symptom management can be complicated by advanced kidney, liver, heart, or lung disease. Medication selection and dosing may require careful consideration, while nonpharmacologic strategies can also play an important role.

The American Association for the Study of Liver Diseases (AASLD) guidance on palliative care and symptom management in decompensated cirrhosis, for example, emphasizes systematic symptom assessment and individualized management. Importantly, palliative care can be appropriate for people with decompensated cirrhosis regardless of whether they are being considered for liver transplantation.

Transplant care involves complicated decisions.

Patients may need to consider dialysis, mechanical circulatory support, repeated hospitalizations, temporary inactivation from the transplant waiting list, or other interventions while awaiting transplantation. These decisions become particularly difficult when the clinical trajectory is uncertain.

Palliative care clinicians can help patients identify what matters most to them, understand potential outcomes, and prepare for decisions that may arise later.

This role is increasingly recognized in advanced heart failure. A 2022 study identified several circumstances that could support specialty palliative care referral, including refractory heart failure, severe symptom or emotional distress, recurrent hospital utilization, advanced therapies, and the need for goals-of-care discussions.

One of the most persistent barriers to palliative care in transplantation is the perception that discussing serious illness or advance care planning means abandoning the goal of transplant.

It does not.

Advance care planning can help patients identify a surrogate decision-maker, discuss what quality of life means to them, and communicate preferences in case they become unable to speak for themselves. These conversations prepare for uncertainty while allowing patients and clinicians to continue pursuing transplantation.

The need is significant. A multicenter study at liver transplant centers found important gaps in advance care planning among people with decompensated cirrhosis. Another study of kidney transplantation found that advance care planning and specialty palliative care consultation remained uncommon among both transplant candidates and recipients.

Rather than framing advance care planning as preparation for death, clinicians can describe it as preparation for multiple possible outcomes, including successful transplantation.

Historically, palliative care has often entered the transplant journey late, after major clinical deterioration or when transplantation is no longer possible. This reinforces the misconception that palliative care is synonymous with end-of-life care.

Evidence suggests there is room to change this pattern. A recent multicenter study of more than 12,000 heart, liver, lung, and kidney transplant recipients found that only a small proportion received palliative care. Referral patterns varied substantially by organ and often reflected increasing illness severity. Earlier involvement was associated with more goals-of-care discussions and, in some populations, fewer short-term readmissions, although the observational design means these findings should not be interpreted as proof of causation.

For people awaiting liver transplantation, a systematic review similarly found that early palliative care interventions may improve symptoms and prompt advance care planning, while also highlighting how limited the evidence base remains.

The goal should therefore not be to require specialty palliative care consultation for every transplant candidate. Instead, transplant programs can normalize palliative principles and practices throughout routine care and develop pathways for specialty consultation when needs become complex.

Clinicians do not need to wait for a crisis to incorporate palliative care into transplant medicine. Several actions can begin during transplant evaluation and continue throughout the waiting period:

• Screen for symptoms and distress. Ask about pain, breathlessness, fatigue, sleep, mood, function, and caregiver strain in addition to organ-specific clinical measures.
• Ask what matters most. Understanding a patient's priorities can help guide decisions when several medically reasonable options exist.
• Introduce palliative care as concurrent care. Explain that palliative care can occur alongside active transplant evaluation and treatment.
• Normalize advance care planning. Encourage patients to identify a surrogate decision-maker and discuss preferences before a crisis occurs.
• Create triggers for specialty referral. Recurrent hospitalization, difficult-to-control symptoms, significant emotional distress, caregiver strain, or complex treatment decisions can prompt palliative care involvement.

These steps also fit naturally within the multidisciplinary approach already central to transplantation. ISHLT and collaborating societies recognize psychosocial assessment and multidisciplinary care as important components of transplant evaluation.

Receiving an organ does not necessarily end a person's palliative care needs. Transplant recipients may face prolonged recovery, treatment burden, complications, graft dysfunction, or eventually graft failure. Conversely, some people on the waiting list will become too ill for transplantation or die before an organ becomes available.

Palliative care provides continuity across these possibilities.

The central question is therefore not whether a person is pursuing life-prolonging treatment or palliative care. For people awaiting solid organ transplantation, these approaches can coexist. By addressing symptoms, supporting caregivers, improving communication, and preparing patients for uncertainty, palliative care can help transplant teams care not only for the organ that is failing, but for the person living through the transplant journey.