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

Comments

[Eleanore Strong]

Terri Schiavo was not on a respirator; she was on a feeding tube, and she was not brain-dead; she was disabled. She was not terminally ill or dying. She needed a feeding tube simply because she couldn't swallow, and when it was removed, she starved and dehydrated to death. Someone who was with her as she starved for 14 days described how horrible her death was, how her eyes darted around in panic and how she panted as her mouth and throat dried out. It took a while for her to die because she was actually in pretty good physical health. It pains me to see her situation misrepresented like this. For most of us, the end-of-life debate is not about "taking all medical means to keep everyone's lungs breathing and heart pumping for as long as possible;" it is about making sure that people who are disabled (and not terminally ill or dying) are not starved to death because we don't feel like taking care of them.

[HAlexandria]

Terri Schiavo's bulimia caused not only the sodium-potassium pump of her heart cells , causing it to stop, but those of her cerebral cortex to liquifiy, meaning she was brain dead.

All sorts of rather morbid things are possible, some insects can "live" up to a week without a head, jellyfish tentacles continue to respond to stimuli even after the body has been destroyed.

I wouldn't call such conditions "life", if anything they are mockeries of life.

[GeorgeBurnsWasRight]

Care to explain why the autopsy showed "persistent and irreversible vegetative state", ie, her brain had been mostly dead for months, probably years?

And the issue wasn't whether people "felt like taking care of" her, it was what medical treatment Terri Schiavo wished to receive. Since she hadn't completed anything in writing to clarify her wishes, her medical decision was ultimately made by the person whom the law recognized as having the primary say, which in her case was her husband. So, Eleanore and anyone else, PLEASE complete the necessary documents so that your spouse or family doesn't have to guess. I am so thankful that my mother did a living will so that while I was in a very emotional situation I didn't have to comb my memory for bits of conversations we'd had over the years to try to figure out what she wanted me to do.

[Eleanore Strong]

Perhaps some points still need to be clarified here. If a person is "brain dead" (and I'm not sure what you mean by "mostly dead') or in a PVS, they cannot breathe on their own. Terri could. She was not on a respirator. She could also make noises, laugh and cry with her family members, and respond to requests to move and blink her eyes. Watch some videos of her situation if you haven't already.

Food and water are not "medical treatment" nor are they "extraordinary measures" to prolong someone's life. Terri was not dying. She was disabled.

And yes, living wills are a good idea - no doubt. The only difference I believe we have is that I feel I should not have to draw up a living will to indicate that I do not want to be starved to death if I can't swallow.

[alphonsegaston]

And as to why it is good to talk to the doctor about this issue--different serious conditions lead to different end of life situations. For some, it will be a question of going off dialysis--the doctor can talk about what will happen if that decision is made. For others, it will relate to Alzeimer's outcomes and such. Getting a living will from a lawyer is important. But so too is talking over the medical details with the doctor involved, or doctors. Placing a DNR bracelet on a family member is a major life decision, one in which the wishes of the patient and the family take precedence. But they need to know exactly what it means. There are several variations of DNR, for example. I have had to both auithorize a DNR and call in hospice for family members, and the security I felt from knowing their wishes and producing living wills which made their wishes explicit was backed up by consultations with the doctors. As I understand it, the new health care bill will reimburse doctors for consultations with patients. In my case that was not necessary, as the consultations had to be with me. But there are many patients who would want to know the details if they were able to understand them. I know that I would.

[offred]

I wish everyone who doesn't have an advanced care directive will would take two minutes to actually familiarize themselves with one.

Here's an overview of what a living will/advanced care directive is:

http://www.re-quest.net/g2g/legal-forms/medical-directives/

Here's the web page where you can locate an advance care directive form for your state.

http://www.re-quest.net/g2g/legal-forms/medical-directives/#forms

Representative questions:
(2) I particularly want to have all appropriate health care that will help in the following ways (you may give instructions for care you do want):
(3) I particularly do not want the following (you may list specific treatment you do not want in certain circumstances):
(4) I particularly want to have the following kinds of life-sustaining treatment if I am diagnosed to have a terminal condition (you may list the specific types of life-sustaining treatment that you do want if you have a terminal condition):
(5) I particularly do not want the following kinds of life-sustaining treatment if I am diagnosed to have a terminal condition (you may list the specific types of life-sustaining treatment that you do not want if you have a terminal condition):