Thursday, May 30, 2013

Lungs, the List and the 10-year-old

I don’t know much about organ transplantation, though I’m learning during a current study with colleagues on the Community Ethics Committee of selection criteria for pediatric transplant recipients. 

Before this study began, much of what I knew was learned one morning several years ago at Seattle Children’s Hospital. I was angry and getting angrier at the unfairness of my 8-year-old daughter having to wait for surgery to implant the tubes that would deliver chemo, other drugs, blood and eventually the stem cells that would save her life. My daughter was anxious and hungry, and I was angry at the delay. 

But something more pressing had come up for the surgeon. Something more important than my daughter and her merely life-threatening illness.

Turned out, a heart had become available, and was delivered by helicopter in the middle of the night. One child’s death gave another child another chance, and got us bumped from first on the surgeon’s morning list. It wasn’t fair, but nothing is fair in organ transplant, where you only get to the top of the list if you’re about to die, and then there may not even be an organ available when you need it. And God forbid something else goes wrong with your body, because that can get you dropped from the list or never placed on it in the first place.

Another insight into fairness and transplant came via friends in Los Angeles, whose only child I had watched grow up before moving east. I visited them at the hospital when she was born, before the cystic fibrosis diagnosis. We lost contact. Then, when I heard from them again, it was to inform me that their daughter had died. She’d made it to high school graduation, but not much longer. She was on the waiting list for a lung transplant when she died. Cystic fibrosis hadn’t left her alone for a moment for 18 years. Her parents put everything they had into that child, but only new lungs could save her, and they weren’t available.

I think about them in reading about the signature drive to get the system run under contract with Department of Health and Human Services by the United Network for Organ Sharing to change the policy that separates children from teens/adults. Adult lungs are less suitable for children, must be modified, and success rates decrease. 

Missing from the signature drive, in support of the anguished parents and their desperately needy 10-year-old, is the fact of just how scarce lungs are. The need is much greater than the supply. 

If this current signature drive succeeds, and this precious 10-year-old manages to get on the adult list and then to receive new lungs, someone else will not get those lungs. And that person, or someone else down the list, will die. Probably without a signature drive.

That doesn’t seem fair, but it could arguably be considered just, and the media coverage might inspire increased donations.

Much of the online dialogue about this case offers more heat than light, but one idea stood out among comments at “In countries where they changed organ donation from an opt-in system to an opt-out system (that is, you were assumed to be an organ donor unless you explicitly requested otherwise), organ donation increased immensely.”

See coverage of the 10-year-old’s plight here, here and here.

Tuesday, May 14, 2013

Hope Comes in Three Flavors

A study from The Netherlands looks at hope as experienced by palliative-care patients -- through the literature of medical professionals.

The perspectives fall into three categories: realistic (“hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth”), functional (“hope as coping mechanism should help patients, and professionals focused on fostering hope”), and narrative (“hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it”).

The study concludes, “Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.”

Monday, May 13, 2013

Hastings Updates Guidelines on End-of-Life Decision-Making

Hastings Center has updated a resource to help medical professionals, patients and families with conversations and other aspects of decision-making in end-of-life care.
“The book is designed for practical use in hospitals, nursing homes, community health settings, or anywhere that professionals, patients, and loved ones need to discuss a patient’s values and preferences concerning different options for treatment and care,” says Nancy Berlinger, Hastings Center research scholar and co-author of the guidelines with Bruce Jennings, director of bioethics at the Center for Humans and Nature, and Susan M. Wolf, professor of law, medicine & public policy at the University of Minnesota.
“The guidelines offer a reliable framework for these discussions, and for education, policy-making, and redesign of care. They also encourage health care leaders and administrators to support better outcomes for patients by building more effective forms of care delivery and integrating care near the end of life into organizational safety and improvement initiatives.”
See more on the guidelines here.
And Hastings Center president Mildred Solomon’s description here