|
|
|
 |
Organs of Change
The Transplant Crisis In America
By Sarah Laskow |
In the last half-century, organ transplant has developed from gothic science-fiction procedure to daily medical reality. The first transplant, a kidney, was performed in Boston in 1954 between identical twins; today, over ten thousand people each year receive such transplants as lungs, livers, kidneys, bone, and skin, in procedures that dramatically improve the length and quality of the recipients' lives. Success has led this once highly-controversial practice to be firmly entrenched in the modern medical canon and to be enthusiastically accepted by much of the U.S. population.
When organ transplant reaches the public eye, it presents the smiling faces of recipients telling stories of a triumphant and seemingly-miraculous return to health. These patients, however, represent those who actually receive the organs they need, and their smiling faces belie the years that they have spent waiting for a second chance at life. The medical success of organ donation has removed it from the public discourse as a subject of national concern, but this complacent attitude contributes to the plight of the growing number of patients who must compete with each other for the small supply of organs available. This deficiency has worsened to the point where it is now considered a crisis.
For the last decade or so, the waiting list for all organs has rapidly expanded, while the number of transplants performed has by comparison crept upwards at a relatively small rate. In the United States, the average waiting time for a heart transplant is about nine months; for a lone kidney, over three years. Every day, eighteen people on the waiting list die because the organs they require are not available for transplant.
These are deaths that should not occur: of people in a position to become organ donors, only 54% of them actually do so, often because surviving family members resist in spite of a patient's own expressed desire to offer his organs for transplant. While resources and research go toward the continuing improvement of transplant technology, it is therefore crucial that a parallel effort be made in public relations. Far more Americans must be made comfortable with donation, not only so that they choose to offer organs themselves in the event of a fatal injury, but also so that, when faced with the grief of a relative's death, they can still help to save the lives of others.
Legally, donation seems simple. Most Americans are familiar with the donor card system, in which signing a card or checking off the donor box on the back of a driver's license indicates intention Ð a campaign to increase these commitments might seem sufficient to solve the problem. But in reality, becoming an organ donor requires more than a quick flick of the pen. While donor documents do serve as a legal statement of an individual's will, they fail to prevent the situation that hospital personnel face when they want to harvest a potential donor's organs: the grief of family members who may not themselves be comfortable with organ donation, especially from the body of their own relative. Hospitals use a donor card as a starting point, but usually require the family's permission as well, and although a donor card can sometimes convince surviving relatives to follow the wishes of their mother, or brother, or son, many others cannot confront the idea of the body being intruded upon. When a conflict arises between the will of a deceased patient and the will of the living, hospital personnel often tip the delicate moral balance of the situation toward a grieving family.
While signing a donor card is still important, becoming an organ donor also requires talking to family about this decision. This step, however, raises organ donation to an entirely different level of effort and commitment. Whereas signing a donor card requires only an abstract decision, having a conversation with family members about death often involves painful and awkward emotions. If family members don't believe in organ donation and a real discussion needs to take place, the passive approach of signing a donor card provides an alternative to the thought of dredging up tears, arguments, and questions of mortality Ð but sometimes it is ultimately ineffective, with fatal result.
The fear of family discussions points to the real problem for organ donation today. In order to ensure the future of transplantation by creating a sustainable supply of organs, there must be better communication Ð within families, between doctors and the families of their patients, and between public figures and communities as a whole.
Most organ donations come from patients who have suffered head injuries, usually from car crashes or other unexpected trauma. The surprise accounts for many lost organs, since families who have not thought about organ donation are hardly receptive to the idea in the shock of their loved-one's death. Furthermore, emotional incomprehension of the idea is a problem hugely compounded when the family does not speak English fluently, since many hospitals and organ banks are not equipped with bilingual personnel who can effectively approach families in this situation.
Race, and not just language, is also an issue. Most transplant surgeons find a correlation between the success of a transplant and the ethnic match of the donor and recipient. The allocation system, which matches tissue characteristics, thus also tends to match people of the same race. This parameter results in lower transplantation rates and longer waiting times for minority patients, because, traditionally, less minorities have been willing to donate their organs. Furthermore, for some minorities, the discrepancy between the availability of certain organs and the demand for them is compounded by their high incidence of diseases Ð African Americans and Asians, for example, are particularly at risk for diabetes and hypertension, the leading causes of kidney failure. There is, therefore, a special need for hospitals to improve the rate of minority donation so that the waiting time for minority patients does not remain unduly high.
A solution to these two problems Ð families whose grief obscures their ability to confront the idea of donation, and minorities whose failure to donate leads to their own especially low transplant rates Ð lies in increased communication long before a decision is suddenly required. In a survey of Spanish-speaking families who had declined to donate a relation's organs, over half of the respondents said that if the situation arose again, they would donate. This change of heart came in the wake of an explanation, in Spanish, about the process and benefits of organ donation. But so far, educational campaigns about organ donation, even those which have targeted minority-populated areas, have not adequately communicated the importance of the issue. Many of them have been conducted in English, even in Spanish speaking areas, and many of the targeted audiences have been led to picture only Caucasian recipients, distancing the issue from communities it seriously affects. If programs could help people in all communities to understand organ donation before they were faced with the issue, and particularly help them to envisage what it would mean for their own families if a member needed a transplant to live, then many lives could likely be saved.
One promising but largely untapped source of organ-donation advocacy and education lies in the very place many people assume to contain donation's staunchest opponents: the religious community. Religious leaders from all major traditions in the United States, including Catholic, Protestant, Jewish, Muslim, and Buddhist authorities, have expressed their support for organ donation, sometimes with the explanation that altruism and the sanctity of life may outweigh competing religious tenets about the sanctity of the human body. Religious figures are essential allies not only because many people are strongly influenced by their faith in forming their beliefs, but also because in the trauma of a family member's death, many people turn particularly to religious support. But even though hospital chaplains often play an important role in the process of a doctor's donation request, community religious leaders have not seen organ donation as an issue important enough to be a standard subject for address in a religious setting. If religious leaders were actively to advocate organ donation, it would not only counteract some people's mistaken belief that their religion opposes organ donation, but would also provide a trusted voice in the process of general education about the procedure.
The sustainability of organ donation cannot rest on the medical community alone. A sizeable and effective donor population can only come from increased education about the procedure, which will help people to understand their choices and to discuss donation with their families in advance. The commitment of one person to donate can improve the lives of over fifty people, but serious work must be done, first in removing the obstacles that prevent hospitals from carrying out patients' will to donate, and second in convincing people to make that decision. Otherwise, the waiting list will expand, the waiting time will lengthen, and the number of patients who die before they can receive the help they need will increase. Instead of allowing this to happen, we need to emphasize education and communication about organ donation, and personally commit to giving life to people otherwise condemned.
NOTES/ADDITIONAL READING
www.unos.org
i.e. BBC News, 29 January 1999.
www.optn.org, www.mayoclinic.org
www.organdonor.gov
content.nejm.org/cgi/content/short/349/7/667
|
|
|
|
|
|
|
