Living donors, you know a lot about what I’m about to talk about. Transplant care coordinators, a required mainstay at every transplant program in the country, are an instrumental part of the experience we go through. They are our gatekeepers, confidants, blood-drawers and needle-pokers, our advocates, weight-measurers and phone call answerers. They are the ones who ask us over and over again how we feel and whether we’re consciously aware of our risks and benefits and implications of our decision. They show us our MRIs, they show up after surgery before we’re lucid enough to know they’re there and again when we are. They see us afterwards for checkups. They explain what biopsies are, why we need certain Xrays and scans, what “bile leak” means. They listen (when they’re good at their jobs). They tell us the rules. They give us permission to be scared and to ask questions. They are the only person who will consistently show their face everytime we visit the hospital. They call us “hon” and “dear” sometimes. Sometimes they don’t. And sometimes they don’t call us back, period, when we’re desperate for them to. What a job. What a monumental, critical, necessary, and probably difficult job.
In my discussions with other living donors from around the country, it has been interesting to see that while everyone’s transplant care coordinator played a similar role in the journey, our satisfaction with their performance in that role is all over the map. Some of us send flowers and mementos to our new lifelong transplant coordinator friend after our surgeries, and never lose touch. Others of us cringe hearing their transplant care coordinator’s name. Why is there such a spread of experiences?
My preparatory work for launching the Greatest Gift Foundation has put me in a unique position to talk to both donors and transplant care coordinators about their points of view on their role. It has been enlightening, to say the least. Some things I’ve learned, which I offer geniunely and not as an accusation or a defense:
- There is a trend of high turnover among transplant care coordinators. Some programs struggle to keep a person in that role for a year or more, as care coordinators either accept different assignments or move around.
- While transplant programs are required to offer dedicated transplant care coordinators, they are not required to hire a specific level of specialist (i.e. nurse practioner versus physician) or to have distinct coordinators just for living donors. Larger programs with larger budgets and more established experience with living donor transplants tend to have dedicated care coordinators for living donors. Smaller programs and state-run institutions tend to care for living donors and non-living donors with the same staff. Many transplant programs couldn’t afford the luxury of dedicated coordinators for living donors even if they wanted to.
- Especially among care coordinators who are not dedicated just to living donors, much of their learning happens on the job. Since living donors are still a minority among transplants, experience with the unique psychological, physical, and emotional experience of living donors comes one patient at a time, as they go along.
- Anecdotally, living donors I have talked to have told me that the quality of care they received from their care coordinator did not impact their decision of whether to donate or not, but the quality of care did greatly impact their impression of the experience and of the hospital.
- Transplant care coordinators receive widely varying levels of support from their institutions. Some have large budgets, frequent training opportunities, substantial help and resources to do their jobs, and strong support from their superiors. Others are operating on minimal budgets, fighting constantly for attention to their concerns for their living donors, and creating what they can from scratch to educate and support patients.
- The relevance of continuing education for living donor care coordinators is sometimes not optimal. While care coordinators are required to maintain levels of continuing education credits, they often earn those credits by attending programs intended more for transplant surgeons or liver or kidney disease specialists.
- Transplant care coordinators from one hospital don’t usually talk to or network with their counterparts in other hospitals. This strikes me as a wonderful opportunity for advancement.
There is one thing I have found in common with every single care coordinator I have met, however. They geniunely care. They are as bowled over by the generosity, courage and beauty of living donors as our family and friends are. They are as in awe of the miracle of living transplantation as we all are. They want to do good jobs.
We can help them, as patients, by telling them what we think and by talking to each other about what worked well and what didn’t, so that those who go after us are better informed about what to expect and what to ask for from their coordinators. If there are any donors reading this who have thoughts to share, specific or general, I would love to hear and collect them, either through comments below or via a personal email if you’d prefer. At the Greatest Gift Foundation, we will work as much as possible to promote the spread of best practices throughout the country and to build a networking channel and productive continuing education options for care coordinators. I’d love to know what else you think we can do.