There is an increasing volume of voices being heard on the subject of the right to die.  It reached a peak some years ago as the drama of Terri Schiavo’s life unfolded before our eyes and ears on the national media.  It became the subject of Congressional hearings and Presidential involvement.  The fight to keep her alive or speed her death unfolded before the whole nation and world.   

In the United States one state, Oregon has had an assisted suicide law on the books for some years now that has been fought through the courts but is still in effect.  The state of Washington in 2009 voted in a similar law.  The push that is going on in Congress and by the President, as this is being written; to adopt a national health care law is causing many to worry that a federal agency will be entering into medical decisions.  In fact, the federal stimulus bill that was passed in January, 2009 contained a new agency called the National Coordinator of Health Information Technology that will “monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective”.  This quote comes from an article written by Betsey McCaughey, a former Lieutenant Governor of New York.  The push is to change the medical reimbursement system from one that pays by the procedure or event to one that pays based upon outcomes.  That makes sense, right?  The doctor gets paid if you get well or the surgery is a success but doesn’t get paid if it is a failure.  But who decides if the treatment or procedure was a success?  And what is success?  Is keeping an elderly person with a debilitating disease alive, a success?  In 1988 when he was 70 years old C. Everett Koop, the former Surgeon General of the United States, had an aliment that left him a quadriplegic but surgery restored his limbs.  In a March, 2009 article in World Magazine he said “if I’d lived in England, I would have been nine years too old to have the surgery that saved my life and gave me another 21 years.”  He was still alive when he made that statement.  

The fact of the matter is that the lay of the land is changing with respect to medical care in the United States and a whole new order is being ushered in.  We don’t know where we are going to end up but we do know it is going to change.  There is also a growing sense that it should be the privilege, even the right, of individuals as they approach the end of their life – regardless of their age – to end their life if it is terminal due to disease or illness especially if it is accompanied by great pain and suffering.  As the cost of medical care falls more and more on the government and, as a result, the taxpayer, might not this right become an obligation?  Will the right to die become the obligation to die? 

Whether or not you are concerned about this eventuality it seems appropriate to take steps to insure that your wishes with regard to the end of life issues are made clear and are put into legally enforceable documents.  As long as there is any discretion at all on the part of your medical providers don’t you need to insure that they are clear on what your wishes are and that they can be implemented even if you are unable to speak for yourself?

At a minimum you need two documents: a Durable Power of Attorney for Health Care and a Health Care Directive.  The durable power of attorney gives some one the authority to make medical decisions for you when and if you are unable to do so yourself.  The health care directive gives that person directions or guidelines on which to base those decisions.  You need both!

Typically these documents are drawn up by your attorney.  In fact, if they are not it is likely that they will fail on some point with respect to the jurisdictional laws in your state and not be enforceable.  Do not make this a do-it-yourself project.  Nevertheless, even if prepared by your attorney, if you and your loved ones have not thought through all of the questions your attorney will ask about your wishes, the documents can later prove to be more of a burden than a blessing.  This is because they can become the source of emotional stress for your loved ones if they don’t agree with the decisions you made.  It can often lead to an irreparable break down of relationships.  This tension between your loved ones is often magnified by the fact that there are often multiple marriages involved.  Today children have more parents than parents have children.

The best way to cause yourself and your loved ones to face end of life issues now while you can discuss the issues with them in a detached manner is by the use of a document called The Five Wishes®.  The five wishes are 1) The person I want to make care decisions for me when I can’t 2) The kind of medical treatment I want or don’t want 3) How comfortable I want to be 4) How I want people to treat me and 5) What I want my loved ones to know.  This document gives you lots of choices for each wish that can serve to stimulate discussion both within yourself and with your loved ones.  It also allows you to express your thoughts on each wish in a way that is not adequately described by any of the choices set out in the document.  You can truly personalize it.  The Five Wishes® document has been prepared and published by Aging with Dignity.  You can contact them by phone at 1 888 594 7437 or via the internet at www.agingwithdignity.org.

If you live in the District of Columbia or one of the 40 states (as of 2009), you can use the document and have the peace of mind to know that it substantially meets your state’s requirements as a health care directive.  However, I would recommend that you still have your attorney prepare a Durable Power of Attorney for Health Care and a Health Care Directive and incorporate this document into it by reference.

Once you have created these documents your job is not over.  You need to take a number of different actions to insure their effectiveness.  First of all you need to give a copy to each of your loved ones.  Ask them to read it and discuss it with you.  Be sure this discussion takes place.  You will have to initiate it because children especially aren’t comfortable in initiating this sort of discussion with parents.  If you discover any disquiet or resistance on the part of those who will be involved or around at the time of your final illness, be sure to address it now.  Either get their acceptance or change the document.

A couple of quick thoughts on who should be given authority to make health care decisions for you when you can’t.  Typically it is your spouse but that may not be appropriate if your spouse is handicapped in any way either physically, mentally or emotionally.  But that is not usually the case.  The big question is who should be the successor to this responsibility if the primary person appointed can’t do it.  Typically, again, I find that the oldest child is selected – just because they are the first born.  But often because of geography or temperament or because of poor relationships with siblings or other loved ones they would find it difficult, if not destructive, to act as your health care attorney in fact.  Think about the selection of this person very carefully and discuss it openly with all who might be involved.

Once you know everyone is on board then be sure to give copies to your health care providers: your personal physician, your hospital and any health care group or facility that you have or may have involvement with.  Also be sure that you have it with you when you need to receive medical care.

Finally, set up a reminder to revisit these documents at least every 3 years.  Your thoughts and wishes often change and the laws of the land change as well.  Contact your attorney to ask if the document needs to be updated from a legal stand point.  And updated if anyone named in the documents becomes unable or unwilling to serve.

There is more to be said on this issue but I will save it for another essay.  I had a very interesting interview with the ethicist at our local hospital that I will share with you in my next essay on this subject.