The Untapped Resource of the Kidney Waiting Lists

Wait List

The Untapped Resource of the Kidney Waiting Lists

By: Jennifer Milton, BSN, MBA, CCTC

Maintaining an up to date Kidney Transplant Waiting List is a universally frustrating conundrum faced by Transplant Centers.

Pre-kidney nurse coordinators and staff are stretched thin: they must balance call, office duties, processing new referrals, managing outreach clinics while covering co-workers’ caseloads, aggressively identifying potential living donors, and of course, the need to coordinate the completion of evaluation testing.

There is a brief but intense sense of achievement when a patient under evaluation finally moves to ‘listed status.’ But once on the list, the coordinator must shift his or her energies back to their new referrals, or to those with testing or results still pending. Each coordinator can be assigned hundreds of patients, who are facing years (even decades) of waiting, with worsening co-morbidities and fading optimism that they will get a “we have a kidney for you” call.

For those of us in competitive areas, our wait listed patients dialyze side by side with those on our competitors’ waiting lists. The social workers, nephrologists, nurses and staff at our referring dialysis units get to know—and yes, judge—our transplant centers based on what our shared patients tell them about us, or just by how readily or confidently our patients answer questions about their transplant status. In fact, a leading complaint from referring nephrologists and dialysis units about transplant centers is the lack of communication with candidates or listed pre-transplant patients.

Transplant centers should critically re-evaluate how they manage patients on the list. Assess your ‘signs of wait-list health’ and then work on ways for the team to stay routinely and pro-actively engaged with these patients to establish a relationship, and keep them educated, engaged, and continuously re-assessed. In particular, the systems in place to screen and engage these patients, if present, should be carefully examined.

A quick way to ‘assess the health of your waiting list’ is to look for a high, or growing percentage, of inactively listed patients:

  • Status 7 is ‘temporarily inactive.’ Yet, many patients can remain a Status 7 for years. Keeping everyone on the list and ready to be called in may not increase the number of kidneys donated annually, but it does result in more transplants, as only active patients draw allocations to your center.
  • You should have a policy in place that every patient placed on Status 7 requires a detailed plan and date to be activated. Tracking systems should be designed to ensure those dates are reviewed, and only a committee decision used to extend the date.
  • Consider prioritizing your wait list “clean up” efforts so that those patients with the longest periods of ESRD are the first to be addressed (rather than just those who have been inactive the longest) and get them re-evaluated or removed. For those who remain candidates, your efforts will pay off most quickly, as those with longer duration of ESRD should be in your top 10-20%,

The next step is to look for the quality and frequency of your team’s contact with listed patients:

  • Is your engagement with patients personable and caring? People react best to doctors and staff who care about them.

Although transplant is more specialized, the feeling of being cared for is just as important to your candidates as they are to you. Yet, transplant centers often do little to stay in touch routinely, to cultivate relationships, or even to display care and customer service to them, once they are on the list.

  • Understanding how to establish these feelings among your listed kidney candidates can be a challenge, but frequent “Just checking on you” phone calls, birthday cards, anniversary reminders, and even simple ‘thinking of you’ notes can be accomplished easily.
  • Patients who have positive feelings about your transplant center will tell their nephrologists, their dialysis teams. And these doctors can direct more business to you because they want their patients happy and well cared for. This type of advertising is more successful, and cost effective than billboards, flyers, dinner meetings or other marketing campaigns.

In short, make sure your patients know how much you care about them, that you haven’t forgotten them, and that they are important to you. What’s going on with them? Any new issues? How are their families? Any change in caregivers/transportation?

A PRN pre-transplant staff member can accomplish this, vendors can help, or most hospitals have volunteer offices that you can engage to perform this simple outreach. Get moving!

A third area of focus is to evaluate your education strategies for listed patients:

  • The listed patient will wait, and wait, and wait. As the months and years pass by, patients inevitably ‘slip’– many don’t keep up with their routine tests, some lose caregivers, switch phone numbers, change insurance, or move. While vascular disease slowly tightens its grip, memories of their BIG transplant evaluation day testing and training fades.
  • Thinking of, or hoping for, a kidney transplant floats down to the last of a list of hundreds of more pressing daily living, medical and often financial issues. Your team has crammed an entire ‘What to Expect When You’re Expecting’ manual/training down a pretransplant patient & caregivers’ throats during that first hectic, appointment filled evaluation day, yet, somehow many years later we have an expectation that the patient will remain just as well informed and ready to go.
  • You can use these more frequent phone calls, recommended earlier, to educate patients on an ongoing basis. “While I’ve got you on the phone, I wanted to remind you that with your blood type and immune system measurement (your “PRA” which I can explain later) you’ve already got three years of waiting list time, and in general it takes about five. “I know I asked you last month to keep your education book handy, and if you look on page 5…etc” The team can end the call and while your conversation is fresh in their mind, email them your education book, a video, or there is even a cool interactive app that walks them through how the waiting list works and educates them on organ donor alternatives such as high KDPI, PHS, living donation, etc.

Lastly, you should report any incident where your center was unable to accept an allocated organ for the originally intended recipient—due to discovering that the waiting recipient had a significant change in status—as an adverse event that should be examined and tracked in QAPI meetings.

These are the times I dread most. You get a kidney offer for an actively listed patient who has waited three, four, six or more years. However, they have to be ‘skipped’ when the coordinator on call, or worse, when the physician or surgeon doing an admission H&P discovers their insurance has changed, or they had an abnormal CT scan last month, or they no longer have a stable caregiver, or they had an admission for chest pain the month before, etc.

It’s even scarier when these issues are discovered intraoperatively or post-transplant. Sadly, many of us can relate: A patient who suffers a cardiac event peri-transplant and out of date cardiac testing is determined to be a root cause; insurance has switched and you had no approval or active authorization; a kidney is lost to thrombosis only to discover the patient was declotted numerous times after listing and never had a hypercoagulable work up per protocol, etc.

Sure, many of us ask for this kind of update from dialysis centers regularly. However, the nurses and staff at the dialysis units are just as busy as our teams, and I suspect that detailed feedback to the transplant center takes a back burner to more pressing patient needs.

The bottom line: Engage your patients on a regular basis. It’s good for them, valuable for your center and will result in more transplants and better outcomes.

 

What do you think?

What are some other common sense strategies that you have employed at your center to deal with the waiting list? Join the discussion below.

 

 

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