Terri Schaivo, End of Life, and Health Care Reform

The last and only public policy debate we had about health care and end of life issues was the Terri Schiavo case. No wonder the conversation has turned hysterical. End of life medical ethics are not abstract. All of us will have to answer the question of how far we will go to keep ourselves and those we love alive during the last stages of life. The Terri Schiavo case reminds us the perils of leaving these questions to the guesses of others. Terri Schiavo's husband maintained that she did not want to be kept alive on a respirator (correction! Feeding tube) while being brain dead while her family felt that taking her off the respirator was an act of murder. Congress got into the act and even then President Bush left his ranch to weigh in on the question. Not exactly a measured reflection on end of life heath care policy.

Of course each of us want to live and keep the company of those we love as long as we can. But each of us should take seriously the question of health care at the end of life and do some deep reflection on quality of life issues as they affect our families. Different people will answer end of life questions differently and religious people come to different decisions. For some, all medical means should be taken to keep everyone's lungs breathing and heart pumping for as long as possible. For them this is what it means to value life. For others, like myself, we want to weigh the quality of life that will be lived and make clear decisions about the limits to which we will use science to keep our bodies functioning after our ability to mentally or physically appreciate life have left us. For me, that is what it means to value life while acknowledging the reality of mortality. There is a time to let go and embrace our life after death.

It is clear that each of us will have different beliefs and wishes regarding end of life health care. To this end, the health care legislation proposed by Congress has provided an opportunity for everyone to have a consultation with their doctor to consider end of life issues. This purely voluntary offering can lead to each of us reflecting on what kind of health care we want at the end of our lives and not leave it up to the guesses of our family members. My parents have created a living will which tells their children their exact wishes when it comes to their own health care. This end of life doctor consultation has come under attack for leading to euthanasia. This is misleading and hysterical. People will still be able to make their own decisions, and most people will probably not wan t to have this consultation at all. But all of us should be thinking about it. If Terri Schiavo had made her wishes explicit we wouldn't have had the media circus we had to endure.

While it cannot be the only or even primary reason for our decisions, Americans should be aware of the wider question of the cost of end of life health care and how it affects health care for society. The numbers are staggering. In an op-ed in the Chicago Tribune Anne Moore reported:

"End-of-life care eats up 12 percent of U.S. health-care dollars. That's not money spent getting well and extending life, that's money spent preventing and easing death in terminally ill patients. Indeed, 30 percent of Medicare's costs are spent in the last year of life."

These statistics are put into their proper proportion when we remember that we have the highest infant mortality rate in the developed world, we don't spend nearly as much as we might on preventative care, and health care for people with HIV/AIDS has been cut in this recent downturn. And, of course, noticeably absent from all of this debate are the 50 million who can't afford health care insurance at all. Again, this is hard stuff and when it comes to the health care of our parents or ourselves. We certainly don't want to, and should have to, operate in terms of cost/benefit analysis. But the fact is that end of life health care is siphoning off more than its share of our health care resources.

Right now the default setting for our health care system is to spend, spend, spend in the last stages of life even when there is no chance of recovery. We should go into the end of life with eyes wide open as to our health care options. Americans should be glad that congress is trying to address this within the health care reform bill. Part of being a responsible citizen is to make a well considered assessment of our own feelings about end of life issues with recognition of how our own decisions will affect the lives of others.

Cross posted from Progressive Revival