CNSW Lead Article: Getting Patients Through the Transplant Process

Jeff Harder, MSW, LICSW

Getting evaluated, approved, listed, and transplanted is not simple. It can be a long, complicated journey that involves a lot of steps along the way. It’s easy to get lost despite your patient’s best intentions. A good way to think of the transplant journey is that it is a marathon, not a sprint. Like a sprint, your patient is not going to complete the process quickly. The patient will need to set a reasonable pace to go the distance without getting overwhelmed. Even then, that is sometimes easier said than done. Here are some of the more common steps in the journey to transplantation:

1. Everybody has the right to be evaluated for transplant and referred to the program of their choice. Nephrologists cannot refuse to refer someone unless there is a clear, identifiable reason why the patient is not a transplant candidate at this time (e.g., metastatic cancer, active uncontrolled substance abuse, refusal to take prescribed medications). Notice that some reasons are correctible, and the patient might become a good candidate at a later date.
2. Talk to the nephrologist to get referral. Patients can refer themselves, but transplant programs will want to get medical records from the nephrologist or the kidney center to evaluate.
3. All programs have somewhat difference processes, but most will set up an appointment to start the evaluation process by having the patient meet with the transplant team, including:
   3. Transplant nephrologist
   3. Surgeon
   3. Transplant nurse coordinator
   3. Transplant social worker
   3. Dietitian, and possibly financial counselor. These meetings are an opportunity for the team to provide information to patient on transplant, and for the patient to ask questions.
4. The transplant team will review medical records to identify any potential medical/surgical/psychosocial issues of concern.
5. The patient then undergoes a series of tests. These tests might be done at the transplant center, or they might be arranged through the referring nephrologist. Depending upon test results, the patient may be asked to go for more testing. The team will identify any medical, surgical or psychosocial issues that need to be resolved before the patient can be approved for transplant. It is important to know that every transplant program has their own evaluation guidelines. It is possible to be denied by one program but accepted at another one.
6. Transplant programs are very busy! Patients need to keep in contact to make sure all test results are received and to find out if any further testing is needed.
7. Patients shouldn’t worry about bugging their transplant coordinator. Programs are busy, and it is possible that patients can fall through the cracks, and teams may forget to follow up with a patient. Patients have not only the right, but the responsibility to know where they stand in the process.
8. All decisions on candidacy are required to be in writing, with specific reasons for any denial.
9. Waiting list – once on the list, often certain tests need to be repeated every year while waiting. How long patients wait is an estimate based on blood type and other health-related factors. To add to the stress of waiting, patients often think of their estimated wait time as their “real” wait time and get very anxious and upset if they wait longer than that. It’s okay to call to ask if they’re still on the list.

How can dialysis social workers help their patients through the transplant process:

1. Assess your patient’s health literacy. Studies have repeatedly shown that patients will lower health literacy have greater difficulties in getting through a complex medical system and are less likely to be listed for a kidney transplant. These patients may need extra attention from their dialysis staff to help them understand the process.
2. Encourage them and coach them on how to call their transplant coordinator. Make sure patients know who to call at the transplant program for information, and what types of questions they should be asking.
3. Coach and encourage patients in the steps they need to take in order to take greater and greater responsibility for their own health care. Patients can get used to the dialysis center staff doing everything for them, and they are often not asked to take much responsibility for their own health care. Transplant programs will not do this for patients and will require patients or their caregivers to take independent responsibility for making it through the transplant process.
4. Gather educational information from your local transplant centers on the transplant process to share with patients.
5. Don’t hesitate to call the transplant social worker or transplant coordinator when you and the patient are confused or are hitting roadblocks. Despite everyone’s hard work this will continue to be a confusing system.

We also recommend asking representatives from your local transplant programs to speak at your local CNSW chapter meetings. We can all work together to help our patients through the journey to transplantation.