Defining physicians' roles in increasing organ donations

Continued challenges in procuring organs for donation trigger consideration of how physicians' can improve communication and care given to brain-dead patients and their families.

By Stephanie Stapleton, amednews staff. July 10/17, 2000.

Chicago -- The statistics remain consistent. Each year, the futures of an estimated 60,000 people hinge on their status on the national organ transplant waiting list.

In 1997 -- one of the most recent years for which statistics are available -- about 20,000 of these patients received a transplant; 35,000 others waited as their diseases progressed. Nearly 5,000 died.

Addressing the problem behind these numbers has become a high priority for policymakers, physicians and patient advocates. And efforts to raise public understanding about organ donation have been stepped up.

But another angle warrants attention: the doctor's role. The AMA's Council on Scientific Affairs issued a report at last month's Annual Meeting in Chicago exploring the scientific, ethical and communication issues physicians' face in the process.

The CSA report stemmed from a Health Care Financing Administration rule requiring that hospitals "designate" a health care professional to initiate the organ donation discussion with the families of patients who are brain dead. But in examining broader issues, the council found that increased physician training could help improve donation rates.

"Everything we do sets the stage," said Michael Williams, MD, CSA chair-elect.

Dr. Williams, an assistant professor of neurology and neurosurgery at Johns Hopkins University in Baltimore, is no stranger to the difficulties involved in discussing organ donation with a grief-stricken family. He has done it as often as three times a day in the neuro ICU where he has worked for the last 11 years. He is also part of a group of researchers who have developed a new training method to help hospital personnel better care for patients and their families through this process.

"Imagine a situation of sudden catastrophic brain injury," Dr. Williams said. "At some point, we must sit down with the family and let them know that the patient has died. To physicians, this often feels like a piling on of grief to ask at that moment about organ donation."

Studies have shown that families view the option of organ donation as very important. Still, a large proportion -- as many as 25% -- are never offered the opportunity, according to CSA data. And even when families are asked, more than half decline.

The CSA found that families' hospital experiences contribute significantly to the decision. Families that opt not to donate also tend to be less satisfied with the quality of care received while in the hospital and have a poor understanding of brain death.

"It can be very difficult to understand the concept," said Dr. Williams. "The chest still rises and falls," and it often is up to the physician to help the family understand the finality.

Increasingly, lessons are being learned about the best and worst ways to approach the this difficult subject. And the separation of the discussion of donation from the care of the patient is one of the most important elements. "We don't want to present a conflict of interest," he said.

Evidence also indicates higher success rates when the donation request is made by a person specially trained in these skills and when the intensive care unit and organ procurement organization staff work together. But a HCFA regulation intended to boost organ donation has had the unintended consequence of confusing some doctors.

The rule mandates that all families be presented the option of organ donation. It also requires the use of trained designated requestors to initiate the discussion. But the CSA report noted that many physicians are not adequately trained to discuss severe brain injury, brain death and organ donation. Even so, the rule still leaves room for the physician to be involved, according to the council.

"Physicians ought to participate," Dr. Williams said, and the report points out data indicating that consent rates are highest when both the physician and the organ procurement organization representative are present and talk to the family together.

Still, HCFA's rule has created tension between OPOs and hospital staff, in part because some view the term "designated requestor" as implying that only OPO staff may approach families. The agency has issued a clarification that its rule requires collaboration between the OPO and the hospital, stating: "ideally the OPO and hospital will decide together how and by whom the family will be approached," notes the CSA report. But some physicians feel left out of the loop, based on firsthand experiences.

"It's incredible to me that our AMA council is in agreement with a process that excludes attending physicians," said Michael E. Greene, MD, an AMA alternate delegate from Georgia. "We need to put physicians back in charge -- not HCFA, not the OPO, not the hospital staff."

Federal representatives said HCFA did not intend to exclude the attending physician. "HHS never meant for physicians to be taken out of the process," said a Public Health Service official. "It's a very, very sensitive time."

Meanwhile, other doctors worry that HCFA's approach will have a backlash at small, rural facilities where personnel with the required training are rare. "That means they are not going to discuss it in St. Augustine or Carthage, Texas. That's a hindrance to organ donation," said Robert P. Carroll Jr., MD, a Texas family physician and AMA delegate.

In the end, however, the CSA concluded that "physicians play an important role in caring for patients and families in [brain death and organ donation] circumstances, and the care they provide is enhanced through training and attention to the special issues involved." Additionally, the council concluded that rather than prohibiting physician involvement in initiating organ donation requests, HCFA's regulations actually encourage increased involvement.

The AMA endorsed recommendations that it continue to promote organ donation and work with other medical societies, the transplant community and HHS to convene a workshop to develop the best practices for medical management of potential organ donors. Doctors are also encouraged to participate in training to work effectively with OPO coordinators to present the options of organ donation to families. Also, the AMA should work to amend the HCFA rule to ensure that attending physicians are included in discussions with the family.

ADDITIONAL INFORMATION:

Kids get first dibs on kids' organs

Under a new policy instituted by United Network for Organ Sharing, transplant patients younger than 18 will be given preference over adult patients when a liver donor is also a minor.

UNOS maintains the nation's organ transplant waiting lists and oversees the national procurement system.

The new policy applies to patients of similar medical need, within current distribution areas. Data analyzed by UNOS committees indicated that this policy will reduce waiting time and increase survival among pediatric liver patients without substantially affecting the mortality or wait time of adults awaiting liver transplants.

Of the children affected by this decision, most are younger than 5 and have a congenital condition.

Previously, a liver from an older adolescent was sometimes allocated to an adult in the same medical status, said UNOS spokesman Joel Newman. Under the new policy, it would likely go to a child. "It's not absolute," Newman said. "Certainly it would not be the case that a more urgent adult would not be given the opportunity to be considered for that organ."

Statistical modeling was used to determine the impact of the policy change on waiting time and survivability. Although the impact on adults was not expected to be significant, the greatest effect seen was on children in the 2B medical status group -- those who are typically hospitalized and experiencing progressive liver disease but not in immediate need of a transplant, Newman said. Giving these pediatric recipients priority cut their median waiting time by 160 days, from about one year to about six months. It increased the waiting time for adults by about 20 days. But given that the waiting time for adults is about 18 months, this is considered a negligible difference.

Yet, "the change could result in a significant improvement in wait times and survivability for pediatric patients," Newman said.