State legislatures are rewriting legislation governing organ donations in one of the most ambitious initiatives in at least 20 years to alleviate the chronic shortage of kidneys, livers and other body parts, an effort that some doctors and ethicists fear tilts too far toward allowing organs to be taken.
Virginia, Idaho, Utah and South Dakota have already adopted a model law designed to make organ donation easier by clarifying a host of sensitive questions. An especially tricky one is how to handle unconscious patients who signed donor cards but also specified that they did not want to kept alive on life-support. Another one is what doctors should do when the family of a dying person who agreed to be a donor objects to surgeons taking their loved one's organs.
"Every hour, a patient dies for the lack of an available organ," said Carlyle C. Ring Jr., who chaired the panel that wrote the model law. "Our hope is this could help with this critical health problem."
The measure awaits the signatures of the governors of Arkansas, Indiana, Iowa and New Mexico. At least 17 other states, plus the District and the U.S. Virgin Islands, are considering the legislation. Supporters hope it is adopted nationwide.
Doctors, bioethicists voice concern
While praised by transplant advocates, the model law has stirred concern among some doctors and bioethicists. Critics say it could result in people becoming donors or kept on life support against their or their family's wishes. And some worry that the measure could make doctors more hesitant about administering morphine and other drugs to make dying patients comfortable, for fear of rendering their organs useless for transplantation.
The revised model law is the latest in a series of initiatives by transplant advocates to boost the number of organs available for the more than 95,000 Americans on waiting lists. Organ banks have also been aggressively promoting a controversial practice that allows surgeons to take organs from patients who are not brain dead, more than doubling the number of such donations in the past three years.
"There are lots of efforts to bridge the growing gap between demand and supply," said Arthur L. Caplan, a University of Pennsylvania bioethicist. "We have to be very careful that we don't make people think that we don't have their best interests in mind and are just going to use them to get their body parts."
The changes are especially troubling, some say, because many Americans check the box to become organ donors when they get their driver's licenses without fully considering the implications.
"Most people who agree to be organ donors think about it in terms of what will happen to their body after they die," said Ana S. Iltis, a St. Louis University bioethicist. "This says it also has implications for what they do to you before you die."
The model law, the Revised Uniform Anatomical Gift Act, updates 1968 legislation adopted by every state to make organ donation procedures uniform nationwide. The law was rewritten in 1987, but only 26 states adopted that version. The National Conference of Commissioners on Uniform State Laws issued the revision after two years of review to reflect medical advances and to clarify ambiguities that hinder donation. It was sent to state legislatures this year to restore consistency nationwide.
"What we're trying to do is come up with a set of uniform rules that will encourage more donations," said Sheldon F. Kurtz, a University of Iowa law professor who helped craft the model law. "The death of any donor is always unfortunate, but the question is, can some good come from it?"
Among many changes, the measure expands the list of people who can consent to an unconscious patient becoming a donor, and makes it clear that a person's decision to be an organ donor cannot be revoked by anyone else.
"If someone says they want to be an organ donor, then what this says is that they are going to be an organ donor -- families can't override that decision. That's a situation that occurs very commonly," said Robert M. Sade, the American Medical Association's representative to the committee that drafted the measure. "The idea behind this is to facilitate organ donation as much as possible."
Donor card would trump living will
The most controversial section deals with unconscious patients who have signed donor cards but also "living wills" or other documents that state that they do not want a ventilator or other medical care to keep them alive, which is sometimes necessary to maintain organ viability until a transplant can take place. Under the act, the donor card trumps the living will, which triggered objections from some bioethicists and doctors who care for critically ill patients.
"It's a false assumption that it's more important for everyone to donate organs than avoid machinery at the end of life," said Michael A. DeVita, an intensive-care specialist at the University of Pittsburgh. "For some people, avoiding a machine may be more important than donating their organs."
In response, the commission sent states substitute language that calls for family members or others to be consulted in such situations to try to determine what the donor would have wanted. Those states that have approved the law already, however, will have to wait until next year to amend it.
While that satisfied DeVita, others remain uneasy that the law would still put organ donation on an equal footing with declared end-of-life wishes.
"I think a person's instructions for end-of-life care should always take precedence over 'make me an organ donor,' " Caplan said.
Others are troubled by the cumulative effect of the proposed changes.
"My concern is that the dying patient is going to be neglected or even harmed for the benefit of someone else," said Gail A. Van Norman, a professor of anesthesiology and bioethics at the University of Washington in Seattle.
Waiting on life-support?
The measure, for example, aims to establish more computerized registries of people who have agreed to be donors but makes no similar provision for those who do not want to be donors. It also gives organ procurement organizations the power to keep potential donors on life-support while they evaluate their organs' suitability for transplantation.
"For a family that's been sitting at a bedside struggling to make an end-of-life decision, asking them to wait even 12 hours can be huge," Iltis said. "This seems to give organ procurement organizations significantly more authority over what happens to patients who could be donors."
Sade and others defended the model law, saying it strikes the proper balance between fulfilling the wishes of those who want to donate and protecting end-of-life care.
"If there's a patient requiring palliative or comfort care, you treat them first. That's clear. This doesn't change that balance," said Christina W. Strong, who represented the Association of Organ Procurement Organizations. "What it does is make sure that to free up an ICU bed a hospital doesn't forget the patient may have wanted to be a donor or their family may want them to be a donor."
But some are concerned that the measure could backfire, frightening people away from signing donor cards.
"Anything that blurs that line between patient-comfort-care-first, organ-donation-later is going to make the American public very nervous," Caplan said.