Good transplant candidate? Yes or no depends on who’s doing the evaluating
Transplant teams face tough choices
A 50-year-old man with end-stage heart failure is referred to your medical center for evaluation to receive a heart transplant. He is in reasonably good health, considering his condition, but has only entered a smoking cessation program two months ago. His previous attempts to quit smoking all have been unsuccessful.
A 17-year-old female patient on dialysis also has been referred as a possible candidate for kidney transplant. She has been on dialysis for almost a year, but has had difficulty complying with her physician’s instructions on diet and medication and also has a coexisting medical condition.
Is either patient an appropriate candidate for organ transplantation?
The answer depends largely on which transplant center evaluates the patient. Once referred by their primary physician, patients in end-stage organ failure must undergo a rigorous and lengthy evaluation process that seeks to determine how well each patient will function if transplanted with donor organs.
Factors such as coexisting chronic medical conditions or an inability to understand or comply with strict treatment protocols often will prevent a patient from receiving a transplant. But these decisions vary from center to center — at one center a patient might be considered an inappropriate candidate, but might be cleared for the surgery at another.
"There is tremendous variability in a number of respects," says Mark D. Fox, MD, a medical ethicist at the University of Oklahoma in Tulsa and chair of the ethics committee of the United Network for Organ Sharing, the nonprofit organization that administers the nation’s donor organ network. "Each transplant center is free to sort of establish their own criteria for acceptance on the list."
An example of the spectrum of differences is thresholds that centers establish for smoking cessation in heart transplant candidates, Fox explains.
Transplant center A may say a candidate has to have quit smoking for six months to even be considered for transplant, while transplant center B will work with a patient on smoking cessation during the months he or she is on the list awaiting a suitable donor heart.
"Transplant center C may say something in the middle because we don’t have good data that say, If you’ve quit for six months, that’s more predictive that you will stay quit than anything else than if you’ve only quit for two months," he explains.
The centers are not trying to pass judgment on lifestyle choices or problems and determine a candidate worthy for donor organs, Fox says, but they have a duty to try to ascertain which patients will have a good outcome after facing difficult transplant surgery and strict medical protocols following surgery to maintain the donor organ.
If a patient receives a donor heart but is unable to stop smoking, the chances are high that that organ will also be damaged and fail or that the patient will be susceptible to serious complications or other diseases that will prevent a good outcome.
Compliance issues are the most difficult for transplant teams to handle, agrees Jennifer Braun, RN, BSN, CCTC, a kidney transplant coordinator at Penn State-Milton S. Hershey Medical Center in Hershey, PA.
Patients receiving kidney transplants have to follow a strict medication and care regimen. It’s questionable whether people who have demonstrated an inability or unwillingness to comply with dialysis protocols or other treatment protocols will do well with a transplant.
"If they’ve missed dialysis appointments or they’ve left dialysis early, then it’s questionable whether they’d be able to undergo surgery and comply with the follow-up," she says.
It seems to be a particular issue with younger patients, she notes. When teen-agers go off to college, they often try to hide their disease, skipping appointments to have their labs checked and not adhering to dietary requirements.
But dialysis is a difficult, grueling, and often discouraging process that is ongoing, while a transplant offers the hope that the patient will lead a normal life.
"We’ve had some patients who didn’t do well on dialysis but once they received a transplant, they did everything right, they made every appointment, followed every instruction," she says. "It’s very difficult to make that call."
Some centers have different standards for transplanting patients with coexisting conditions, which means some patients may be better off shopping around for transplant centers.
"For example, in the heart transplant community some centers are more comfortable accepting patients with diabetes and some other centers are very reluctant," Fox explains. "Patients with diabetes are at risk of small-vessel disease in their heart, so they are not candidates for bypass surgery, yet they are at very high risk of experiencing complications [from a transplant]."
Again, says Braun, transplant centers do rigorous medical examinations of potential transplant candidates to determine whether the patient can withstand the operation and whether the organ will be able to function.
Some coexisting conditions, such as cancer or severe heart disease, will almost certainly rule out candidates at all facilities. But different centers and different surgeons will have different comfort levels about managing patients with other medical problems.
Sometimes, it is a matter of geography. In Pennsylvania, there seem to be a higher proportion of people with blood clotting disorders, says Braun. A transplant surgeon who moved into the area from California said he had no experience even considering whether to do a transplant, she says.
"Here, it is something we see all the time, so we are used to dealing with it," she notes.
If transplant teams are aware, however, that another center might be willing to perform the surgery, they have a duty also to inform the patient, Fox says.
For example, he used to live in a city with two large transplant centers, but both had very different views about smoking cessation in heart transplant candidates. A patient that one center would not list because he had not quit smoking could probably get on the list at the other.
"If we have to say no, the patients ought to know that there are other places that might have a difference of opinion that might be willing to list them," Fox says. "I think that piece of information may not be readily available to patients, and I think there needs to be that level of transparency there."
Although Fox says he believes that it is appropriate for centers to set their own thresholds for listing candidates, he worries that potential candidates are not aware that the criteria are not set in stone nationwide.
One of the most difficult ethical areas involves dealing with patients who have personality disorders or other psychological problems that make it difficult for transplant professionals to feel comfortable the patient can understand and appreciate the risks of the surgery itself and be able to comply with the follow-up care, notes Fox.
"Around the psychosocial issues arise the biggest divisions in transplant teams," Fox says. "Answering the questions of, Does this person have adequate psychosocial support?"
That may also present problems when the patient goes to another transplant center, he adds.
"If we decide, for whatever reason, that you are not an appropriate candidate at our center — that we just can’t feel comfortable that you will do well — and we tell you, and you say, I want to be referred to another center,’ then we will. But then the other center may want to know why we didn’t accept you as a candidate," Fox explains. "If I then say, well I think these are the issues, then that is going to color their perception of you as a candidate. The other center is not going to be too eager to do the transplant if I express those concerns, and they may have been comfortable doing it if they had done the initial evaluation."
Who makes the decision?
Different transplant teams also have different dynamics when it comes to the final decision. Most transplant centers have a team of professionals evaluate a potential candidate — giving examinations that evaluate the person physically, mentally, and emotionally. But when it comes to the final decision, it may either be a team decision or left up to the surgeon.
At Hershey Medical Center, it is usually the transplant surgeon who ultimately makes the call, says Braun.
"There is usually not a lot of disagreement, but the final decision is up to the surgeon," she notes. "If he or she feels someone is not an appropriate candidate, then they aren’t. And if he or she feels someone is, then that is also the case."
However, not all centers and surgeons operate that way, Fox notes.
"There are really not that many cases where there is a strong difference of opinion," he says. "But I have known surgeons who always want to have a consensus. If they think someone is an appropriate candidate and others on the team feel strong the person is not, then he or she is not an appropriate candidate. On the other hand, some surgeons feel that since they have the ultimate responsibility [for the patient’s outcome] then they should make the final decision."
Aside from the issue of who should be listed, a more compelling question for transplant teams is when to admit that patients who are already listed are no longer appropriate candidates, Fox says.
Patients with end-stage organ failure of any kind are seriously ill with a condition that will prove fatal if they don’t receive a transplant. In many cases, the longer they wait on the list, the more serious their problems become and the more secondary medical conditions they develop.
In some cases, it becomes highly unlikely that these candidates will be able to undergo a transplant and do well and recover, he adds. And transplant teams need to begin considering when palliative measures and not transplant are indeed the better option.
Transplant teams are in a unique situation as medical professionals because they must contend with the scarcity of available donor organs and the large number of patients that these organs could help in some way, he explains.
"I think we do much better on the front end of deciding who to list in the first place and not on the back end, because these are patients that we’ve gotten to know, we’ve taken care of them, and transplantation may be a better option for them than no transplant, but it is not a better option for them than for someone down the street or someone at another center," says Fox. "There is no good consensus about when a patient is too sick to be transplanted. Once they are listed, they don’t get off the list, that’s it."
In some cases, this means that donor organs go to a very sick patient who is only able to live a few more months without truly recovering, he says, and another patient who might be able to go on to live a normal life loses that chance.
Transplant teams need to do a better job of considering palliative care as an appropriate option for people who have end-stage organ failure, both in patients who have been listed but have not been matched and for patients who never make it on to the list, for whatever reason, he says.
"It should be seen as part of a continuum of care that we provide to patients with end-stage organ failure," he says. "Then, it is not a stretch to say, You are too sick to benefit from transplantation, but we are going to help take are of you in the final phase of your illness.’ It’s not saying we have nothing more to offer you. It is just saying that transplant might not be the most appropriate option."
End-of-life issues should be discussed with patients in end-stage organ failure and their families regardless of the patient’s prospects for transplant, he adds.
Any person with a condition serious enough to warrant transplant should also be asked to consider what treatments they do and do not want in the event that a transplant is not possible, or, if performed, not successful, he notes.
"Transplant candidates are put in a really unique limbo where it is sort of prepare for the worst and hope for the best," Fox explains. "There is this carrot dangling out there that you hope an organ becomes available, and at the same time you have to be realistic that you are sick enough that your mortality risk is substantial and you need to make end-of-life decisions."
- Mark Fox, MD, United Network for Organ Sharing, Organ Procurement and Transplantation Network, P.O. Box 2484, Richmond, VA 23218.
- Jennifer Braun, RN, BSN, Penn State Milton S. Hershey Medical Center, 500 University Drive, Hershey, PA 17033.