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February 21, 2008

Wishes for end-of-life care, organ donation can conflict

Recent changes in the Uniform Anatomical Gift Act (UAGA) have created potential conflict between an organ donor and his or her organs.

The 2006 UAGA, designed to eliminate some potential roadblocks that can hinder organ donation, has raised ethical concerns among critical-care physicians and others who have pointed out that language in the act requires medical staff to prioritize organ care over other end-of-life care for a dying patient who is a designated organ donor.

“It’s not only saying one is more important than another, it’s also requiring me as a physician to act in a way that supports that,” said professor of critical-care and internal medicine Michael DeVita in a Feb. 7 lecture sponsored by Pitt’s Center for Bioethics and Health Law.

DeVita said it’s not necessarily wrong to prioritize organ care, but patients need to be informed and have an opportunity to choose. “This supposition that one should trump the other in the favor of caring for organs over patients is just ungrounded, untenable and, I believe, unethical,” he said.

While the 2006 act since has been amended by its authors to quell these concerns, the version containing the problematic language already is on the books in nine of 20 states that adopted it, with bills pending in just two of them to enact the amended version.

DeVita said the problem sprang from a lack of input from end-of-life caregivers and patient advocates when the National Conference of Commissioners on Uniform State Laws (NCCUSL) wrote the updated act.

NCCUSL is a group of lawyers that drafts model legislation on issues of nationwide interest or impact that must be decided by individual states. NCCUSL’s draft legislation then can be used by individual state legislatures as-is or with modifications to create laws that are largely consistent from state to state.

American organ donation laws date back to the 1968 UAGA, which was adopted by all 50 states. The uniformity disappeared when a 1987 revision was adopted by only half the states. (Pennsylvania law remains based on the 1968 version.)

In the ensuing decades, it became clear a new UAGA was needed, DeVita said, in part because questions had arisen on issues such as balancing the desire to be an organ donor with end-of-life care.

Some medical personnel ask family members’ permission even if a potential donor has signed an organ donor card. Often, the family refuses, creating conflicts over whose wishes should take precedence, he said.

In part, the 2006 UAGA facilitated organ donation by strengthening language barring others’ ability to override an individual’s stated decision to be an organ donor. It also promoted the ability of organ procurement organizations (OPOs) to assess the potential for donation before life-ending procedures might occur.

Previously, DeVita said, a transplant team might not be aware of a potential donor until after the patient’s life support had been withdrawn, eliminating the chance for transplantation.

“OPOs now are permitted to figure out whether I’m an organ donor before doctors withdraw support on me,” he said.

While the authors aimed to eliminate potential barriers to organ donation, the language contained in the 2006 UAGA stated that during the time the OPO is making its examination, “Measures necessary to ensure the medical suitability of the part may not be withdrawn unless the hospital or procurement organization notes that the individual expressed a contrary intent,” DeVita said. “They went from ‘permitted’ to ‘you’re not allowed to withdraw support.’”

The language can conflict with the wishes of organ donors who also have expressed a desire not to be kept alive on machines; it also can tie the hands of the medical staff who are caring for a dying patient.

“They wanted to promote a good thing, but didn’t conceive of this worst-case scenario,” DeVita said, offering as an example a case in which a critical-care doctor was caring for a dying stroke victim. Following state law, the OPO was notified that a death was imminent and learned the patient was registered as an organ donor. “The OPO reps were talking about the brand-new passed UAGA, which they interpreted as having a section saying no life sustaining treatments may be withdrawn because the patient is an organ donor,” DeVita said. The medical staff caring for the patient felt as though they were being prevented from discussing the patient’s status, prognosis and options with the family, he added. The presumption, he explained, was that such a conversation might lead the family to choose to withdraw life support, eliminating the chance for organ donation.

“It created some perturbation in the ICU. Everything was put on hold between caregivers and the patient’s family,” he said.

DeVita noted that the number of transplants in America has remained relatively flat over the past several years, ranging from about 13,000 to 14,000. About half come from deceased donors, he said, adding that those numbers could be increased if more attention were given to organ donations and the processes required to facilitate them, he said.

DeVita said that there is a large distinction between donations from deceased donors. With brain death, circulation still occurs if the patient is on a machine, allowing the opportunity to procure more organs that will tend to function better. Typically seven organs — two lungs, heart, small bowel, two kidneys and liver — can be transplanted. In the case of donation after cardiac death, where there is no circulation, kidneys and perhaps a liver could be donated, he said. “There is an interest in allowing the person to be supported by the machines long enough for brain death to occur,” DeVita said.

In spite of the fact that about 90 percent of Americans view organ donation as a good thing, only about 30 percent know what steps to take to donate and only about 10 percent actually sign donor cards, DeVita said.

Likewise, while most Americans have specific wishes about their care and under what circumstances they want resuscitation or other interventions, DeVita said, few have put them in writing and even fewer have discussed those preferences with a loved one, doctor or lawyer.

“There are ways of ensuring these preferences but typically people don’t do it,” he said. “Just like organ donation, very few of us have written down what we want.”

Those who have completed advance directives typically have not thought to specify their organ donation wishes in the document, DeVita said. “And amongst those who have had the foresight to realize that organ donation is part of end-of-life care, most have not prioritized one over the other.”

DeVita said authors of the UAGA recognized the potential conflict between the intent to make an anatomical gift and the intent to not have life support systems used merely to prolong a life.

The authors also presumed that the desire to save lives by making an anatomical gift trumps the desire for other end-of-life care, DeVita said. “They resolved it in a way you would expect three transplant physicians and three OPO lawyers would want it resolved,” DeVita said. “They didn’t include anybody to represent the patient.”

Popular opinion is not so cut and dried. DeVita asked the two dozen people in the audience whether their desire to be an organ donor should take precedence over their desire not to be kept alive on machines. In a show of hands, no clear majority emerged.

Absent such agreement, “I think it’s difficult to make either a legal or an ethical or perhaps a political case that one is more important than the other and therefore one should be trumping the other,” he said.

DeVita said that while he was “just astounded” after reading the document and found critical-care medicine colleagues with whom he shared it to be “horrified” by the contents, the authors seemed unaware of the potential clinical implications.

“The thing that was really interesting to me was that something that was so obvious to everyone I showed it to, this group was clueless about. I think it’s obvious in retrospect why they were clueless about it. … They say they had all the constituencies. In fact, I don’t agree that they did. I don’t think they had the moral underpinnings to make those documents that they did.”

DeVita pointed out that organ donation and other end-of-life care decisions don’t have to be mutually exclusive. “Isn’t organ donation part of end-of-life care? Shouldn’t that be one of the things that is discussed with people as they make an advance directive or as we’re discussing poor Dad who’s had this terrible stroke?” he said.

To NCCUSL’s credit, DeVita said, revisions to the 2006 UAGA adopted in March 2007 recognize the importance of advance directives, end-of-life care planning and organ donation.

“They acknowledge that in the absence of a specific prioritization neither trumps the other and they recognize that there is an important need for quality end-of-life care that organ donation should not trump. But they did state that organ donation is part of quality end-of-life care,” he said.

Wording on how to proceed when the patient’s organ donor status is unknown or a conflict exists has been changed to require the physician and prospective donor (or the donor’s representative) to confer to resolve the issue.

“I think they’ve got it just right,” DeVita said, pleased that the patient’s caregivers, not the organ procurement organization representatives, are part of the discussion. The changes also state that before a conflict is resolved, measures necessary to ensure donation may not be withheld or withdrawn if doing so is not contraindicated.

“The resolution I think was pretty good,” he said, adding that the choices needn’t be either-or.

“Fortunately, in skilled hands you can do both. I think the preference is to make sure everyone understands that organ donation is part of the legacy that people leave behind them. It impacts a number of people including the grieving family.

“Recognition that organ donation is part of end-of-life care is not only preferable; it’s usually feasible. Good collaboration and the way the law is written now turns an either-or situation into a ‘let’s do both’ situation.”

DeVita said he hopes NCCUSL has recognized that organ donation issues differ from transplantation issues.

“It’s a very different set of ethical concerns,” he said, adding that transplantation issues can include deciding how to distribute donated organs; donation issues include promoting end-of-life planning and personal choice.

“Today’s resolution I think is good. I think they’ve redone the law right,” he said, adding that while current issues have been taken care of, the law undoubtedly will need to be revised again in 15-20 years.

“Only then are we going to know if they’ve learned their lesson.”

—Kimberly K. Barlow

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