Wednesday, January 5, 2011

End-of-life planning - don't stop thinking about tomorrow

My daughter and her grandmother
"The Obama administration, reversing course, will revise a Medicare regulation to delete references to end-of-life planning as part of the annual physical examinations covered under the new health care law, administration officials said Tuesday." Thus begins a New York Times article citing "procedural reasons" and "political concerns" as factors leading to the change. Clearly the administration does not want a resurrection of "death panels" hysteria. Alas, a widely misunderstood but sensible provision has bitten the dust.

Some people think the term end-of-life planning means "planning to end life." Not at all (though cleverer politicians might have come up with a less confusing term). End-of-life planning is not about euthanasia (illegal in all states) or physician-assisted dying (currently legal in Oregon, Washington, and Montana). Rather, it seeks to answer this question: When you come to the end of your life, what kind of medical treatment do you want?

Why should end-of-life planning be part of an annual physical?

1. All of us - even Boomers and politicians - are going to die.
If we are fortunate enough to have living parents, they are going to die too. Some of us will die too soon. We will have a fatal accident or contract a killer disease or succumb to the sudden failure of an essential body part. Some of us will die too late. We will continue to breathe long after our minds and bodies have shut down, or we will endure unspeakable pain for weeks, months, even years (and no, despite the advances in pain medication, not all pain can be removed). Unless we and our loved ones die suddenly, with no warning, all of us will eventually have serious decisions to make.

2. It is better to start thinking about end-of-life decisions before we have to face them.
If we are in pain, or terrified, or unconscious, or demented, or in a hospital bed, it is hard to research and consider our options. If we are willing to think about death before we're actually staring it in the face, however, we can consult not only with our physicians, but also with our clergy, our family members, and our friends.

3. If we don't write down our wishes in advance, someone else may make our decisions for us.
If we have a health-care power of attorney, that person will be a relative or friend we have chosen. If we do not, it may be a health-care worker that we don't even know or a relative that we wouldn't trust with our lives. If we have written down our wishes regarding end-of-life care, our agent is likely to follow them. If we have not, our care will depend on state law and our doctor's or agent's philosophy.

4. If we don't regularly review our advance directives, they may stop reflecting our wishes.
As people age, their attitude toward death may change. Twenty years ago, I was helping my parents fill out a form required by their nursing home. In case their hearts stopped beating and/or their breathing stopped, did they want (a) to spare no effort or expense in order to prolong life, (b) to be given life-sustaining treatment as long as they were not in an irreversible coma, or (c) no intervention if burdens would outweigh benefits? Without a second's hesitation, both of my parents said, "No intervention." Startled, I gently suggested that life-sustaining treatment might be the better option. "You are speaking as a person in her forties," said my father. "We are speaking as people in their eighties."

In addition, as medical science advances, new interventions may make our final days more comfortable - or less bearable. A yearly conversation with our doctor about end-of-life planning could help us make wiser decisions in light of continually evolving options.

5. End-of-life planning is about free choice, not rationing.
Advance directives are not about people who, with proper intervention, would return to health. They are about people who are going to die soon no matter what intervention is offered - people who are too ill, too injured, or too worn out to ever return to health. With intervention, they may prolong the dying process, adding a few days or weeks to their lives; but they may also add pain, the discomfort of being in hospital, and the possibility of being kept alive by machinery after their brains have ceased to function. Some people want all possible intervention; some prefer to let nature take its course. In the absence of an advance directive, health-care providers tend to opt for intervention. This can be very expensive - and why take money out of the Medicare pot to hospitalize those who would rather die naturally, perhaps at home or in a hospice, when that same money could be used to treat the dying who want those extra weeks?
*   *   *   *   *
Well, the health-care law was going to make it easier for Medicare recipients (and their children) by asking them to think about these things once a year. Now we're back on our own, and most of us will continue to pretend that we (and our parents) are immortal. While we nestle our heads in the comforting sand, some people will be getting state-of-the-art but ultimately futile treatments that they do not want, and other people won't be getting the heroic end-of-life measures that they urgently desire - and all so we can be free from the unbearable intrusion of having our personal physicians ask us if we'd like to talk about our wishes.
What you can do today

Fill out and sign a health-care power of attorney, listing the people you trust to make decisions for you if you are incapacitated; and an advance directive, specifying the degree of medical intervention you want if you are dying. In some states, the power of attorney includes a section on advance directives.

You can get these forms from doctors, hospitals, nursing homes, or attorneys. You can also download them right now, at no cost, from a variety of sites on the Internet. State laws differ, so be sure to get forms from your own state. For example, Illinois residents can get the combined health-care power of attorney and advance directives here and a living will (an advance directive for people who do not want intervention that prolongs dying) here.

Give copies of your signed forms to your doctor and to each person listed on your power of attorney.

Keep copies at home. Take copies to the hospital or emergency room when you or a loved one goes for treatment. Review your documents yearly, on your birthday or when you go for a physical exam.

Even if nobody reminds you.


Anonymous said...

You should send this to the NY Times or the IHT as an Op-Ed. It's worth having it available for more people. In fact, some of your politicians should get to read it as well!


Ann Kroeker said...

Very instructive and a great reminder that just as I need to attend to my will, I need to attend to my advance directives and distribute to the appropriate people.

I agree with the previous comment, as well--this is a great letter to the editor for a major news publication.