It seems like a no-brainer. Check the box, save a life. So I checked it. My kids checked it. Their dad checked it. We never discussed it. It was just the right thing to do.
In December 2009 an emergency room physician called me 1,000 miles from home to say my husband had suffered a fatal heart attack. Then, I received another unexpected call, from LifeSource, the non-profit that handles organ and tissue donation for Minnesota and the Dakotas (www.life-source.org). Of course, Ted had checked the box. I soon wished we had discussed the decision and made it part of our end-of-life planning.
Time was critical if he was to be a donor. In addition to conducting tests and reviewing medical records, LifeSource needed to ask me questions. Early the next afternoon, as I stood in the hospital with family nearby, I spoke with a LifeSource representative. I was bone tired. Straining to hear, a half hour passed as I fielded what felt like interminable and highly personal questions. Did the soft-spoken young woman really ask whether my husband of 20 years had been treated for a sexually transmitted disease? My mind was orbiting in slow motion; I couldn't process all those questions about his health. I knew he took medication but couldn't recount types or doses. What if I gave the wrong answer?
Late last year, I shared my concerns with Susan Gunderson, CEO of LifeSource. She was empathetic and committed to improving a process she acknowledges is difficult but vital. "Are all those questions necessary?" I asked. "Couldn't donors complete a baseline questionnaire when they check the box?" At least there would be a starting point for the interview.
Gunderson took my questions to heart and set about improving the process. Staff looked critically at the questionnaire and streamlined it as much as possible within the constraints of governmental guidelines. When they make the initial contact they explain the nature of the process: how long it will take, that the questions will be personal and involve medical and behavioral topics. They coach volunteers to assure next-of-kin they should answer to the best of their knowledge and not worry, as I did, about answering inaccurately. Patients who receive the gift must know they inherently take on some risk by agreeing to accept an organ, Gunderson says. The only way to prevent the risk of disease transmission is to not perform transplants.
I recently read the questions that were posed to me over the phone. With clarity I lacked then, I see that they are not that horrific or intrusive. They are purposeful - designed to ensure, as much as possible, that a gift intended to extend or enhance life does not diminish or destroy it because it is diseased. If I'd seen the questions ahead of time, the experience would have not been so wrenching.
Although the government requires medical information about donors to be current, donors could still complete the questionnaire and leave it on their computer or with their personal papers as part of their end-of-life planning. When the time comes it would make the process that much easier for the bereaved who get the call (find information and the questionnaire at www.life-source.org/donation/register-to-be-a-donor). For example, LifeSource could email the questionnaire to next-of-kin before the interview.
Over time, my consternation has yielded to satisfaction that we were able to complete the process, for the need is greater than I realized then. As of November 2011, nearly 113,000 were on the national waiting for organ donations, mostly kidneys and livers. Every day 18 people die while waiting for a transplant; every 12 minutes a patient joins the list. The number of potential candidates who aren't eliminated because of timing, age or health issues is quite small, Gunderson says.
There is a demand for more than organs, though. Tissue, bone and eyes can be donated up to 24 hours after death. Eyes can restore or preserve sight. Heart valves save children with birth defects. Connective tissue, veins and arteries can help patients to walk again or avert amputation. Bone, tendons and ligaments can be used to relieve pain and restore mobility. Skin can be used in reconstructive surgery for burn victims or breast cancer patients.
"For the patients who receive the gift it's life-saving or life-changing," Gunderson says. "It's incredibly powerful, and they're grateful for that. It doesn't diminish the loss at all. But that's part of what we sometimes find ourselves going through.
Ted's bone and tissue were gifts to 84 people between the ages of 15 and 82 in 17 states. He would have been proud to know his final act supported LifeSource's mission: to provide the bridge between the loss of life and the gift of life. It's a double gift - from the donor and the loved ones who make it happen in the midst of overwhelming grief.
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