Doing Bioethics: Death Panels and Good Deaths

Death has dominated the news cycle this past week – from discussion of “deathers” at town hall meetings to analysis of Senator Ted Kennedy’s last days. My field of bioethics deals with both of these issues.

In bioethics we label these issues differently, calling them “end of life decision-making” and “preparing for a good death”. The idea behind them is the same, though – having the opportunity to plan for a "good" death. This can range from specifying who gets to make decisions if you are unable to do so yourself, or figuring out how you want to spend the last few months of your life. In my opinion, a society that supports individuals as they make these choices is more humane than one that does not.

New Mexico state law designates who will make decisions if you are not able to do so yourself. Here's the text of the Uniform Health Care Decisions Act; most important to know is that if you do not put together an advance directive, the state defaults to a list of who gets priority (as codified in law). This is also known as surrogate decision-making.

In New Mexico a spouse gets top priority, followed by an individual in a long term relationship with a role similar to that of a spouse (there's a lot of jargon, you can read it here). This is followed by an adult child, parent, adult brother or sister, and grandparent.

A word to the wise - as a bioethicist, I've sat through more hospital and clinical ethics committee meetings than I can count. Quite often, they involve family disagreement. When the conflict is between a spouse and the desires of their adult children, the law is clear, though the ethical disagreement may be murky or troubled.

When it involves disagreement on the same level of legal priority, such as two adult children disagreeing about a parent's care, it becomes much more difficult. This is certainly true from a legal standpoint, but also from the anguish of watching loving family members who each believe that their position is best. (NOTE: bioethicists and hospital ethics committees see their role as helping to clarify confusion and facilitate discussion - we do not issue pronouncements of What To Do from our perch on high).

One way to avoid this specific problem is simply to have an odd number of children or parents or siblings - then it is just a matter of majority rules. In all seriousness, a better way to avoid this is to designate a surrogate decision-maker in an advance directive, whether it is a Durable Power of Attorney for Health Care or some other legally binding document. Consult your lawyer on this - I'm just a professional question-asker.

Obviously, ethical decisions and law are not necessarily the same thing (though they can and do overlap). A good outcome in bioethics is one where all of the parties involved reach a decision that everyone can accept, though it may not be their first preference.

So how might one go about doing this?

One option is to bring up the subject of your death at a random family gathering. Granted, this approach has some flaws, one of them being that you are likely to wind up sitting by yourself - everyone else having left to go for a walk or to watch the game. (About fifteen years ago my first cousin, who worked for a bioethics foundation, and I tried this out on our family. This was the result, though we ended up having quite a spirited discussion amongst ourselves).

Another, more helpful, approach is to go to the website of the Institute of Ethics at the University of New Mexico and download the Values History form. (Scroll down to the bottom of the page for the link to the pdf download).

Unlike the Optional Advance Health Care Directive Form, the Values History does not limit itself to issues of who will make decisions, or artificial hydration and nutrition preferences, or pain relief treatment options. Instead, the Values History gives you a framework of questions to help you articulate your values. Given the news stories of how Senator Kennedy thoughtfully and carefully chose how to spend his last months and weeks and days, my guess is that he and his family discussed several of the same issues covered in the Values History, though I have no idea whether they used this particular form.

The Values History offers questions like this:

What are your goals for the future?
What, for you, makes life worth living?
What do you fear most?
What is your spiritual/religious background?
Where would you prefer to die?

The instructions ask "Who should consider preparing a Values History Form?"

I can't top their answer, so I've pasted it below.

Who should consider preparing a Values History Form?

Everyone. While we often focus on older people, it is just as important that younger people discuss these issues and make their wishes known. Often some of the most difficult medical decisions must be made on behalf of younger patients. If they had talked with families and friends, these decision makers could feel reassured they were following the patient’s wishes.

We hope this Values History Form is of help to you, your families and friends. Many people have commented that it is important to reflect, not so much on “How I want to die,” but on “How I want to LIVE until I die.”

The Values History Form was developed at the (former) Center for Health Law and Ethics, UNM School of Law. It is not a legal document, but can be used to supplement legally binding documents such as advance directives (Living Will, Durable Power of Attorney for Health Care Proxy). This is just one example of the superb work in bioethics that has come out of the University of New Mexico - I'd say these are tax dollars well spent.

Views: 46

Comment by cc on August 31, 2009 at 9:19pm
I look forward to printing some of these Values Forms out and sharing with my family.

Our mom, experienced with the difficult decline of her mom and mom-in-law, became very concerned with how her own aging/decisions about her care would impact her kids. She got in on some excellent discussions about ethics around death and dying at her church up in Colorado. This was over 20 years ago. I attended one of the forums with her. She became a big proponent of Living Wills, and we of the next generation have had ours all done for a while. Only a year after attending this forum did she get to put her Living Will to use.

Encouraging people to be prepared and know how they want to be treated IS NOT about telling them WHAT to do. If she were around today, her ire at the fear mongers touting "death panels" would have her writing letters and speaking out.

THANK YOU for giving this clear, very useful information, Barelas Babe.
Comment by Barelas Babe on August 31, 2009 at 10:19pm
@cc- so sorry for your loss. Your mother sounds like she was a wonderful person - spirited and thoughtful!
Comment by bg on September 1, 2009 at 9:49am
Too bad that Teri Schaivo did not have this good advise. Imagine your life on national TV, your body being used by politicians and random people on the street, well-intentioned or not, as a prop for their own belief system. And your family's suffering lost, maligned and misappropriated for all manner of shrill madness.

It could happen to any of us.

Thank you so much for posting this.
Comment by Michelle Meaders on September 1, 2009 at 11:52pm
I read that a big part of the problem is doctors. They keep wanting to try to keep people alive long after it makes sense or is wanted by the patient. Of course many of them want to help patients die with dignity, too, but have to break state and federal laws to do it. Having hospice available and covered by Medicare has been a great advance. As is changing the wording from "do not resuscitate" to "allow natural death", which is a big shift in thinking.
Comment by Kitty Irreverent on September 2, 2009 at 7:11am
BB thank you for summing up so eloquently what I've been trying to get out of my mouth in one well formed thought. I've had variations on this discussion with people for weeks now.
Comment by JeSais on September 2, 2009 at 2:18pm
This is great information... I would also add that folks should make sure they have a will. Especially if they have children. AND any Transfer on Death accounts should have current beneficiaries. My dad passed away a couple of years ago, and left a huge mess of unpaid taxes, unopened mail, and a condo full of mostly crap. Fortunately he had a will, and had appropriately designated beneficiaries on accounts, which made dealing with the rest of it a little easier.
Comment by Lee on September 3, 2009 at 1:30pm
This idea of laying out your beliefs/desires/needs beforehand is a great idea because as was mentioned... you really never know what's going to happen and it is an awful lot to ask those who are taking care of you, or taking care of what is left to try and work out without any sort of understanding of what you want. Having been through this I can't imagine trying to take care of all that needs to be taken care of without some solid understanding.

We went through this with my Dad a few years ago.. I can't tell you how many times over the years (while still 100% healthy) he would wander into this subject only to find himself talking to the walls.. Nobody wants to think of this when you are fit with no end in sight. However when it became clear that his health was failing and hospice was becoming an option I will say that the best thing to happen was a frank discussion of what he wanted, thought, believed. Aside from clearing up any doubts about such things it was a great, albeit teary way of coming to grips with the inevitable as a family.

Ideally do both.


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