Many who know me are aware that I’m very troubled by trends I’ve observed in medical ethics as applied to persons with disabilities. This past week, we learned of Paul Corby, a 23 year old man with autism who was denied access to the heart transplant list at the University of Pennsylvania primarily because of his autism. If you click on the picture below (sorry, couldn’t embed the video), you can see a news report on Paul’s situation. Paul’s family has launched an online petition with over 240,000 signatures to the U.S. Senate in an effort to get him a transplant, and plans to seek second opinions at the Mayo Clinic and the University of Pittsburgh.
On another note, a paper published in the Journal of Medical Ethics with the title Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? recommended “rapid access to legal remedies for end-of-life disputes involving children whose parents resist withdrawal of aggressive therapy on the basis of religious beliefs.” The Journal did publish several commentaries on the paper (summarized here), most notably this response from Julian Savulescu, Oxford University professor and Journal editor:
I argue that Brierley et al are wrong to claim that parents who request futile treatment are acting against the interests of their child. A better ethical ground for withholding or withdrawing life-prolonging treatment is not that it is in the interests of the patient to die, but rather on grounds of the limitation of resources and the requirements of distributive justice. Put simply, not all treatment that might be in a person’s interests must ethically be provided.
The meaning of “distributive justice” will be critical to the fate of children and adults with disabilities in the not too distant future. Is it possible that medical ethicists will find ways to manipulate the meaning of this principle in the event that exploding financial pressures in the healthcare system necessitate rationing of care? We discussed Dr. Savulescu and the Journal of Medical Ethics back in March in a different context. Is it too much of a stretch to imagine a scenario at some future date in which pregnant women are required to undergo amniocentesis and health care is denied for children born with foreseeable disabilities on the grounds that the money could more “justly” (according to medical ethicists) be spent on others?
From my read of the Bible, the same patterns continue to recur throughout human history. It won’t be a surprise if, as in the first and second centuries, Christians are again in the position of caring for the sick and the disabled and advocating for the powerless.
Should we fear the “slippery slope?” When the ethicists responsible for laying down the principles for determining who will and won’t get access to medical treatment operate from a position of contempt for Christians (and other people of faith), we’ve already started careening down the hill.
Key Ministry’s mission is to help churches reach families affected by disability by providing FREE resources to pastors, volunteers, and individuals who wish to create an inclusive ministry environment. We have designed our Key Catalog to create fun opportunities for our ministry supporters to join in our mission through supporting a variety of gift options. Click here to check it out! For a sixty second summary of what Key Ministry does, watch the video below…