Sunday, July 08, 2001

Families withhold organ consent

Misunderstandings slow donations

By Tim Bonfield
The Cincinnati Enquirer

        More than 40 percent of families with loved ones who could be organ donors refuse to give consent after they die — a situation researchers attribute to widespread misunderstanding about the process.

        As a result, thousands of organs nationwide go uncollected even as waiting lists for organ transplants continue to grow.

        Many erroneously think that families will be billed for consenting to organ donation, or that donating an organ will prevent an open-casket funeral, or that their church opposes organ donation.

        “We are still running into the same misperceptions that have plagued us for years,” said LifeCenter spokesman Mark Sommerville. “It is very hard to overcome some objections, especially the religious or spiritual objections.”

        According to a study of 420 potential organ donors conducted by Case Western Reserve University in Cleveland and published in the July 4 edition of the Journal of the American Medical Association, more than 43 percent of families refused to allow donations.

Reasons people give for not donating organs
        Families were especially unlikely to give consent, the study found, if they:

        • Did not know a loved one's wishes.

        • Had never talked about organ donation.

        • Were generally uncomfortable talking about death.

        More than 77,000 Americans are on waiting lists for organs, including 261 people in Greater Cincinnati, according to LifeCenter, the agency that manages organ donations in the Tristate.

        But largely because of a lack of open communication, Case Western experts contend that a potential pool of 12,000 to 15,000 organ donors a year nationwide is reduced to about 6,000.

        “We found that people don't know much about the process of donating organs, so they have many questions about what it means,” said Dr. Laura Siminoff, a Case Western professor and lead author of the study. “People who had some sort of discussion with their family members ahead of time were much more likely to donate.”

        This general finding coincides with a statewide survey conducted this year for the Ohio Department of Health that found wide variations in attitudes about organ donation:

        • Families of patients who died at age 65 and up are less likely than families of younger adults and children to consent to organ donation.

        • African-Americans are less likely than whites to allow organ donation.

        • Low-income people (less than $20,000 a year in household income) and people with less than a high-school education are less likely to consent compared with college graduates and people earning more than $100,000 a year.

Print a donor card
        Here's how the donor process works:

        By law, hospitals are required to notify LifeCenter (or other organ procurement organizations) when they have a potential organ donor — which generally means a patient on life support machines who is about to be declared brain-dead.

        Before the family is consulted, the LifeCenter and hospital staffs check for signs of disease that would preclude organ donation and for any records, such as an organ donor card, that state the patient's preferences.

        LifeCenter staffers do not talk with families until after doctors officially declare a patient brain-dead and notify the family. In most cases, hospital staffers introduce the family to a LifeCenter staff member after a period of grieving that can last from one to several hours.

        The LifeCenter staff member then explains what's involved in organ donation, answers family questions and seeks consent. If the patient has not stated a preference, and the next of kin does not consent, there is no organ donation.

        So far in 2001, about 56 percent of potential donors or their families in Greater Cincinnati have given consent. That's up from 44 percent in 1998.

        LifeCenter officials say they have answers to most of the common objections and misconceptions about organ donation.

        They even have information on organ donation views from 29 religious faiths, from Amish to United Methodist. Several faiths actively encourage organ donation; many others raise no objections or state that organ donation is a matter of personal choice. Only two faith groups (Shinto and Gypsies) raise specific objections to organ donation, according to LifeCenter.

        It appears that spiritual objections to organ donation reflect a folk belief that the body must be whole for the spirit to enjoy an afterlife rather than any specific church teachings, Mr. Sommerville said.

        Among the other common questions raised by families about organ donation:

        Q: Will donating organs prevent an open-casket funeral?

        A: No. Organ donation does not interfere with funeral arrangements, even for those who prefer open-casket services.

        Q: Are families billed for the costs of donating organs?

        A: No. The costs involved in collecting and transporting donated organs are paid by the transplant recipient or his health plan.

  Research organ donations
        Q: Can a person be too old to donate organs?

        A: Although some people in their 60s may think their organs would be too old to be donated, in general, the LifeCenter can accept organs from donors up to 75 years old.

        Q: Can a person's illness before death affect their ability to donate organs?

        A: Yes. Most people who had active cancer within five years of death, all people who were HIV-positive, or had hepatitis B, cannot be organ donors. Other diseases that affect specific organs also would preclude those organs from being donated.

        Q: Does having diabetes prevent organ donation?

        A: It depends on the patient's condition. Even in cases where kidneys have been damaged, hearts, lungs, livers and other tissues might still be useful.

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