A primer on organ donation.

• Author: Sirico, Louis J., Jr.

1. INTRODUCTION II. WHAT A TRANSPLANT PATIENT SHOULD KNOW III. ALLOCATING DONOR ORGANS IV. BECOMING AN ORGAN DONOR V. DISPELLING MYTHS ABOUT ORGAN DONATION VI. THE ATTORNEY'S ROLE VII. CONCLUSION I. INTRODUCTION

   The number of patients waiting for organ transplants is staggering. On March 3, 2003, for example, 53,689 patients were awaiting kidney transplants, 16,916 were awaiting liver transplants, 3,830 were awaiting heart transplants, and 3,828 were awaiting lung transplants. (2) Still others were awaiting transplants of the pancreas, pancreatic islet cells, intestines, and dual transplants of the kidney and pancreas and the heart and lung.

   Over recent years, the number of organ donors has increased only modestly, while the number of patients waiting for organ transplants has grown exponentially. For example, in 1990, approximately 20,000 patients were on the national waiting list. (3) As of March 3, 2003, there were 80,517 registrations on the waiting list. (4) However, throughout that decade, the annual number of cadaveric organ donors increased slightly; during the period of January through November 2002, these donors numbered only 6,186. (5) (Patients can register at more than one hospital, and a donor can contribute more than one organ.) Because there were not enough donors, only 24,792 organ transplants took place, and, in 2002, 5644 people died while waiting. (6) Yet, until medical technology develops further, organ transplantation will continue to be the only resort for many dying patients.

   As organ donation gains increasing attention in our society, attorneys have an obligation to stay current on the issues so that they can properly advise two groups of clients: those who may need transplants and those who, if given reliable information, might consider becoming organ donors. A client in need of a transplant may wish advice about putting his or her affairs in order, and a client who retains an attorney to draft a will may be interested in learning about organ donation. Attorneys should know what a potential organ recipient should consider, how donated organs are allocated, how to become an organ donor, what myths discourage individuals from becoming organ donors, and the role attorneys can play in raising the issue of organ donation with their clients.

2. WHAT A TRANSPLANT PATIENT SHOULD KNOW

   When a patient considers a transplant, he or she may be surprised to hear the physician offer this observation: "When you get a transplant, you trade one set of problems for another set of problems."

   The physician's point is that a transplant does not return a patient to a time when he or she enjoyed excellent health. Certainly, receiving a transplant is a wonderful miracle, and the patient's health is usually better than it has been in a very long time. However, the patient must still deal with a host of concerns, including the threat of organ rejection, a strict regime of medication and follow-up care, the knowledge that, at some point, the transplanted organ will fail, (7) and the consequences of living with a weakened immune system. (8) In light of these concerns, a patient must decide whether to seek a transplant, which hospital to use, how to finance the surgery and related expenses, and how to reduce the inevitable stress and enjoy the gift of life.

   For some patients, a transplant may not be the appropriate course of treatment. The patient may have reached an advanced age or may be suffering from a serious illness that has weakened the body so profoundly that a more conservative course of treatment is the better alternative. The patient may not be a good candidate if he or she has a history of alcoholism or drug addiction. (9) In these cases, the patient may be unable to show that those addictions are a part of the past and will not surface again. A successful post transplant life requires strict compliance with a regime of medications and follow-up care. If a patient is unlikely to comply, he or she is not a good candidate. For all such ineligible patients, medications and quality care may prolong life, sometimes for many years.

   Any patient considering a transplant must come to grips with the reality that he or she will not live as long as a comparable healthy individual. If the patient is not a good candidate for a transplant, the patient may not survive very long with one. In addition, for such a patient, the period after the transplant may prove very difficult with constant trips to the hospital and a poor quality of life. A more conservative treatment may result in a longer, more comfortable life.

   For the patient seeking a transplant, the choice of hospital is important. Perhaps the initial question for the patient to ask is how many transplants of this organ has the hospital performed? The best choice is the hospital with a medical staff that has considerable experience with the medical procedure and the care of transplant patients, both before and after the surgery. A fair number of hospitals perform only a handful of transplants of a particular organ each year. Other hospitals may have performed many transplants, but may have recently undergone a major turnover in the medical staff. Although these hospitals may be first rate and have excellent medical staffs, a patient might understandably prefer a hospital with more experience. (10)

   According to the organization in charge of the national system for allocating organs, the patient should consider "the number of transplants the hospital has done, the survival rate at that hospital, the location of the hospital, the support systems you will have in that area (your family, friends), [and] your general feel about the hospital and its transplant team." (11) Yet, a hospital with a lower survival rate may also be one that has the experience to take on risky patients that other hospitals may decline. Thus it may be more attractive than a hospital that is very conservative in admitting patients.

   The prospective transplant patient should also learn about the post-transplant regime so that he or she can prepare for it. That regime includes participating in physical rehabilitation, undergoing frequent testing, at least at the beginning, making changes in diet, renewing personal relationships with family and friends, and developing a positive psychological attitude. (12) The patient may find that most of these matters require only moderate...