BLOG: Time to shift paradigm around ‘caregiver requirement’ for transplant recipients
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When I was young, green and fresh out of school, I got a job as a clinical social worker in an adult bone marrow transplant program.
It was daunting. Medical centers are complex. Transplant programs are even more complex. And the psychosocial needs of patients are especially complex.
Fortunately, I had good mentors who helped me learn quickly.
One of the first things I came to understand was that an important part of my role was to educate patients about the “caregiver requirement.”
A social worker met with every patient at the time of their transplant consultation. After the patient saw the physician, I would introduce myself and offer some educational materials before dropping a major bomb: The patient would need to have a caregiver with them 24 hours a day for a minimum of 100 days after transplant.
This news often elicited devasting responses, such as “What? I am single and don’t have any family in town.” Or ““I’m on my wife’s insurance. She has to work, or we’ll lose coverage.”
I quickly realized that helping patients figure out how to fulfill this requirement was largely my responsibility, and it was a big one.
The directive was to craft a plan and get the patient to sign a contract outlining the expectation that they have someone with them for 3 full months after transplant.
The problem? There were no options for patients who didn’t have an obvious caregiver plan.
Hiring a 24-hour caregiver from an agency is cost-prohibitive for just about everyone. Insurance will not cover the cost of round-the-clock care without a skilled-nursing need — and even then, it never would be offered all day, every day.
The requirement that I was tasked with addressing became a filtering mechanism. It separated those who could receive a life-saving treatment and those who could not.
It always seemed unfair but, when I started doing some research into who this affects the most, it became unjust.
Patients who are married have a higher probability of undergoing transplant, likely because of the caregiver requirement. Marriage rates in the U.S. are 50.9% for White people and 29.5% for African American people. Like many things, the caregiver requirement separates patients along racial lines.
The good news is that we can change this. The field of transplantation is ripe with innovation.
We are constantly evolving the science to successfully cure complex diseases. We use precision medicine to understand a patient at the cellular level and treat them accordingly. Why can’t we do the same thing to meet their psychosocial needs?
The pandemic demanded creative ways to deliver health care. Telemedicine, remote monitoring and Zoom check-ins abounded.
For those patients who don’t have the privilege of a built-in caregiver, we can get creative and precise. We can build safe posttransplant plans that work for each patient’s unique circumstances.
It is time to replace the caregiver requirement with something that serves everyone.
Intrigued? The National Marrow Donor Program is leading groundbreaking work to shift the paradigm around the caregiver requirement, and you can get involved.
For more information, send an email to caregiverstudy@nmdp.org.
References:
- Mock J, et al. Transplant Cell Ther. 2021;doi:10.1016/j.jtct.2021.06.030.
- United States Census Bureau. Marital Status. 2019 American Community Survey 1-Year Estimates. Available at: https://data.census.gov/table?q=Marriage&tid=ACSST1Y2019.S1201&hidePreview=true. Accessed Aug. 31, 2023.