Thursday, September 29, 2011

You, Me, Us and Medical Ethics

Baby Joseph died this week. his family is Canadian, and the medical community there refused to provide a tracheotomy and long-term ventilator so that he could go home until he died. His medical team felt it was "too risky and invasive for a terminally ill child," and indeed wanted to take him off life support at the hospital. A "pro-life" group then flew him with his father to St. Louis, where the Roman Catholic-sponsored Cardinal Glennon Children's Hospital stepped up and said they'd see he got this opportunity. Sounds great, care for the most vulnerable and all that. It was, and remains, however, "extraordinary" treatment because it could at best only extend his dying. Now, some six months later, the child's suffering is over. The St. Louis doctor insisted that religion played no part in the decision to do the surgery, and that they were simply trying to do the best they could for the baby. He said that he has made a different decision, to end life support, in other cases with the family's consent.

Now, I may feel that the Canadian medical team took a wise stand - but Baby Joseph is only a name to me and I'm wise enough to know that if he were my child, nephew, cousin, or the child of a friend I might feel differently. As the doctor in St. Louis said, these cases must be dealt with individually. However, and it's a significant however, he did come across as just a bit disingenuous since - besides his position at a Roman Catholic hospital - he authored an article against the use of "brain death" to determine death. Since we can't see the soul leave the body, physical determinants are our only option. Now, the autonomous nervous system - the part that keeps the heart beating and the blood pumping - can continue to show activity after all other brain activity has ceased. But since "human" designates a being with more than instinct and autonomous systems it seems to me that we can't consider a patient with only autonomous activity to be alive - at least, not as a human being. Hmmm...I feel a debate coming on. Hope it starts in this blog's "comments" area!

The main point here is that medical treatments and technology have come a long, long way and people today survive illness and injury that would most certainly have meant death even a decade ago. These advances, though, come with a price - and it can be a harsh price for the patient, family and society as a whole. Medical ethics must grow in sensitivity and the ability to face honestly (many doctors still can't) the fact that human beings die. All the treatments and pills in the world can't change that.

Extreme treatments cost money. Nasty idea, to bring money into a discussion on human life. We are, however, social beings; we do not live in isolation from other human beings. Public money spent to keep "me" alive - if hooked up to a phalanx of machines and able to move or communicate little if at all, or to provide extreme treatments - say, a heart/lung transplant for a patient with Cystic Fibrosis - is money not available for treating a number of other, less extreme medical needs - say, a tracheotomy and long-term ventilator. Bill Gates may have more money than God (does God have money?) but even after he and an insurance company have paid the bill for an extreme treatment, some of the cost is absorbed by a hospital and/or medical group getting state and federal funding. There is a point at which the cost to society must be considered. For instance, consider two children needing that heart/lung transplant.* One family is "middle class," with all members having a high school diploma, and some a college education; the other is deeply impoverished with few members having a high school diploma. Before surgery, there is significant medication and treatment that must be attended to strictly, along with doctor appointments that are essential. Equally essential today, such families are given cell phones which must be charged regularly, left on 24/7 in case a match is found, and never used for anything else. These families must be ready and able to get to their hospital immediately after that all-important call. After surgery, there is a laundry list of "musts" for patient and family including doctor visits, physical therapy and medication. As with every transplant, medication to prevent rejection is required every day of that person's life - one year, or sixty years, or something in between. If a heart/lung match is made to our two "sample children," who should receive the transplant call? The unpleasant, harsh - heart-wrenching - reality is that the impoverished patient is less likely to be successful after transplant. The family may well have no access to immediate transport to the transplant hospital, be unable or unwilling to keep the phone charged and working 24/7, may not have the understanding and determination to keep the child's medication filled and administered on schedule, and in fact may well have missed required doctor appointments beforehand.** The family with more education is going to have a better grasp of the need to medicate properly and daily - whatever it takes to do that, and are likely to have better access to the transplant hospital; they are more likely to have made all those doctor appointments before surgery, and willing to make the appointments with doctor and physical therapist afterwards. They are in a position (money for the electric bill) to keep the phone charged and at hand, and to deal with the myriad complexities of transplant recovery.

Society has a real and necessary interest in protecting and providing for all its members - including both children in my example. Surely we must allow that society - with its diversity of religious voices - to have a place in decisions regarding who gets what care?

Okay, companion Renegades...put on your ethics/moral theology caps and let me know what you think about all this!

*Heart/lung transplants do not cure Cystic Fibrosis. The disease will attack the transplant in time, and eventually - if the patient has survived - a second transplant will be needed.

**One of my brothers is a specialist in infants with pulmonary problems and/or Cystic Fibrosis. The scenario given reflects a reality he has experienced personally.

No comments:

Post a Comment