Awaiting Liver Transplantation

Patients with end-stage liver disease (ESLD) face a catch-22. Their symptom burden is as heavy as patients with end-stage cancer or chronic obstructive pulmonary disease.1 Yet in contrast with those who have no curative options available, patients with ESLD may have the potential to undergo lifesaving liver transplantation. As supply of organs far outweighs demand, these patients live with the reality that they may die awaiting a compatible organ. That these patients should have readily available access to palliative medicine providers to manage symptoms, ameliorate psychosocial distress and clarify goals of care during the waiting process seems obvious. Most do not. After obtaining institutional review board exemption, 50 adult liver transplant programs in the United States were randomly telephone surveyed to determine: (1) utilization of palliative medicine services, and (2) code status requirements for patients while on the waiting list. Thirty-five programs completed the survey. Only two routinely include palliative medicine consultation in their preoperative assessment programs. All but one requires either implicitly or explicitly, patients to remain “full code” while being on the waiting list. On informal questioning, the reason for this reluctance to include palliative medicine consultation is the concern that consultation will lead to a do not resuscitate (DNR) order or patient desire for hospice services, both of which are perceived as antithetical to the goals of transplantation. But, are they? If someone with ESLD has a cardiac arrest and resuscitation is “successful,” the best realistic outcome would be return to previous symptom burden with additional functional decline; the worst outcome would be prolonged dependence on life support and death in the intensive care unit. This hardly seems consistent with the wishes of a patient fighting to regain a normal life via liver transplant. The importance of advance care planning is well understood. It is particularly apropos for these patients to be allowed full and honest discussions concerning treatment goals and end-of-life discussions. However, can someone really express their true preferences with the fear that if they desire to allow a natural death (i.e., DNR), it may obviate their chance for the potentially lifesaving organ? This is a catch-22 that does not have to be. Contrary to many clinicians' beliefs, a DNR order is not the equivalent of “do not treat”; nor should it be equated with giving up hope. Patients can choose to allow a natural death, while still wanting to avail themselves of all possible life prolonging treatments. These 2 concepts are not mutually exclusive. Medicare understands this precarious situation and allows patients to use their hospice benefit while simultaneously awaiting liver transplantation. Also, a study from University of California at Davis showed its utility.2 A basic tenant of palliative medicine is to support a patient when he/she hopes for the best, while at the same time encourage them to see the importance of planning for the worst. Should the patients awaiting liver transplantation not be afforded the opportunity for honest advance care planning and access to palliative medicine providers if desired? This would go a long way toward relieving suffering in this very ill patient population.