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.