Family caregiver support is lacking across organ transplant centers nationwide. The trend represents significant unmet needs that some say palliative care providers are well-positioned to fill.

Transplant caregivers navigate a complex range of medical and nonmedical needs, and often receive fragmented support, according to Yadira Montoya, programs director at the National Alliance for Caregiving (NAC)

While family caregivers typically receive medically-focused education, they can lack exposure to the spiritual, emotional and practical aspects of supporting transplant patients, Montoya stated. Even less attention is given to addressing the social determinants of health such as financial, housing or transportation needs, she said. These are just some of the areas that palliative care teams could help to improve.

“Most transplant centers require that a caregiver be present and available to patients in order for them to be considered for a transplant,” Montoya told Palliative Care News. “At the same time, there really isn’t an infrastructure to provide that caregiver with the support services that they need to be able to care for the recipient, much less what they as a caregiver need to maintain their own health and well-being. Palliative care providers are really poised to help improve quality of life for both the recipient and their caregiver.”

A recent NAC report examined caregiver programs at various types of transplant centers across the United States. Among the report’s key findings around the biggest challenges in caregiver support included:

• Roughly 30% of transplant centers nationwide do not have caregiver support programs.
• Only 3% of transplant centers perform caregiver reviews at regular intervals.
• Nearly half (40%) of transplant centers either lack procedures, or are unaware of documentation processes for assessing caregiver needs.

“A big takeaway from the report is that these family caregivers are left to navigate a really complex system by themselves, communicate and coordinate with different health care providers, and take on a huge amount of tasks in terms of responsibilities,” Montoya said. “It’s really high stakes for transplant patients, with high responsibility that caregivers shoulder.”

The NAC survey’s findings illuminate a greater need for stronger caregiver support, according to Dr. Anuradha Lala-Trindade, survey reviewer for the project. Lala-Trindade is the director of the heart failure clinical trials program at Mount Sinai Hospital. She also serves as associate professor of medicine, cardiology and population health science and policy at the Icahn School of Medicine at Mount Sinai.

Caregivers play a critical role in the transplant ecosystem, and embedding palliative care care teams into these settings could boost quality for patients and families, Lala-Trindade stated.

Early integration of palliative care is needed, from pre-transplant decision-making to post-transplant recovery, as well as to help patients and families navigate complex medical, emotional and financial challenges, she stated. Palliative care providers can provide assistance with physical, emotional and practical needs, as well as stronger caregiver education and respite support.

“Palliative care providers can help ensure that caregivers receive the support they need while improving transplant patient outcomes,” Lala-Trindade told Palliative Care News in an email. “Stronger collaboration starts with embedding palliative care within transplant teams to ensure seamless, patient-centered support. Co-location or shared team members ensure that palliative care perspectives are integrated into pre-transplant assessments, decision-making and post-transplant recovery planning.”

Surveyed transplant centers cited some common barriers to comprehensive caregiver support that included limited awareness of caregiver needs (among 48%), financial constraints (43%) and time limitations of current staff (42%), according to the NAC report.

Stronger care collaborations are needed to move the needle toward more seamless, patient-centered care, according to Lala-Trindade. For instance, transplant teams could receive cross-training in palliative care principles, while palliative care teams could benefit from greater education around the complexities that organ transplant patients experience.

Palliative care teams can assist with care coordination, pain, symptom and medication management, goals of care conversations and can help provide resources to help guide caregivers throughout a loved one’s health care journey, according to Montoya.

“Palliative care teams really support the whole process so that it isn’t so burdensome on the caregiver,” Montoya said. “We see that in symptom management … but psychosocial and spiritual support also comes up, as do questions about advance care planning. Those are big questions that caregivers are grappling with where I could see palliative care supporting.”