Conclusions and Recommendations:

Improving the Transplant Experience

In his January 1998 State of the Union Address, President Clinton focused national attention on the country's health care financing and allocation problems when he said
"It's time we took medical decision making out of the hands of the insurance companies and put it back in the hands of the medical professionals where it belongs."
Surely, what applies to insurance companies should also apply to the federal government.

According to Secretary Shalala,

"HHS does not want to choose which patients receive scarce organs. Transplant professionals must make those choices. But this regulation will help assure that organs are allocated on the basis of medical need, and that the availability of organs will not be impeded by arbitrary geographic lines."
However, the new rule could give decision-making in this critical area of medicine to the governmental administrators and take them away from the doctors.

Maybe it's time the policy makers started talking with the patients. Speaking with hospital personnel, patients and their families made it apparent that the experiences and perceptions of each individual can be markedly different.

Pat W., when faced with having to decide between death or a heart transplant for her newborn son, felt there was virtually no counseling provided by the transplant center medical personnel. Sherri R. and her family all believed that there was adequate counseling from the transplant center personnel. Their only real complaint has to do with the stresses involved with what they’re going to do once Medicare stops paying for Sherri’s anti-rejection medication. Paula C. felt that everything went smoothly, but her family members did not have the same perception. Charlie D. lauded his insurance company, and Mike B.'s family treated the whole situation matter-of-factly.

When a person is in the midst of an illness, the inclination is to do whatever the doctor tells you: you don’t question, you don’t think about consequences, you don’t think about the long term. You are most concerned with what can I do right now to make sure it doesn’t hurt anymore.

Family members view things differently. Because they’re often not in the room with you when you talk to the doctor, they always feel like they’re playing "catch up." Aggravating this is the fact that there simply isn’t enough counseling aimed directly at the family members and the caregivers.

The perception of the care being received needn’t have anything to do with the actual care being received. Unfortunately, perception becomes reality.

For the most part, hospital administrative personnel and hospital medical personnel see themselves as helpful and willing to go the extra mile for patients and their families. Although they acknowledge that it is a difficult bureaucratic mire to wade through, they believe they facilitate patients and their families at every juncture. Unfortunately, patients and their families rarely have the same perception of the administrators’ efforts, although they almost uniformly praise medical personnel.

This can be seen in two ways. First, it could simply be that there has to be someone to put the blame on, and whoever can be classified as a "paper pusher" is always the easiest to blame. Or, the complaints can be taken at their face value; in which case, there are definitely problems with the system that need to be streamlined, made more patient-friendly and less ponderous and circuitous.

There also seems to be a certain compassion lacking during the follow-up care at many facilities. The fact that Paula C. had to wait so long each time she went for follow-up care lacked a certain amount of compassion and active management on the part of the clinic staff. The excessive waiting times built into the process create the impression that the staff is only interested in the easiest way they can accomplish their tasks, and don’t take the patient’s needs under consideration.

Of course, the gravest problem facing transplant centers and organ procurement organizations is the lack of available organs. Secretary Shalala is obviously aware that the system as it currently functions has serious problems. But as well-intentioned as her proposed reforms might be, they do not address the real problem. If there is to be any governmental intervention at all, it should be geared toward increasing organ donation and making the organ procurement agencies operate consistently and actively promote organ donation across the country.