Diane E. Meier, MD
Director of the Center to Advance Palliative Care
Professor of Geriatrics and Palliative Medicine, and Professor of Medicine
Icahn School of Medicine at Mount Sinai
A colleague of mine was once hit by a truck and suffered head trauma so severe, I thought she was going to die. Thankfully, she recovered, but when she was first injured, she was unable to communicate or make decisions about her own treatment.
At the time, she was in a serious relationship, but unmarried. Had she not previously documented her wishes about whom she trusted to make health care decisions on her behalf in such an event, her partner would not have been legally recognized or allowed to make those decisions for her.
Fortunately, my colleague had done what is called "advance care planning," a process that addresses the possibility that at some point in your life, due to illness or injury, you will lose the ability to make your own decisions regarding your care. Advance care planning provides a "road map" to those who would have to step up to make decisions on your behalf if -- and only if -- you were unable to make your own. (It is important to note that as long as you are alert and cognitively intact enough to participate in decision-making, your plan would not be activated.)
Who Wants to Think About That?
Advance care planning is understandably scary for many people. None of us wants to think about a time when we would be unable to make our own decisions. We would rather focus on the here and now.
And, it can feel unnatural to decide today about a hypothetical situation that may or may not occur 10 or 20 years down the road. You may think, "Why contemplate this now? When and if this occurs, I can trust my family and doctors to make the best decisions for me."
Unfortunately, it's not that simple. Because of modern medicine, we have many more choices than we had even a generation ago, and we can keep essentially vegetative people alive for a very long time. Before life-prolonging medical technologies existed, it was reasonable to trust your doctors and family to make the best decisions for you. But now that they are available, clinicians and families feel obligated to use them--unless patients have given clear guidance as to what they feel is a life worth living.
It Doesn't Have to Be Complicated
The most important elements of advance care planning involve just two chief decisions that everybody -- even healthy people -- should make:
1.Whom do you trust most to make health care decisions on your behalf if you were unable to speak for yourself?
2.Would you or would you not want efforts made to prolong your life if your brain were permanently injured, with no expectation of meaningful recovery?
Of course, you might want to discuss advance care planning with your doctor and loved ones, but these are ultimately your decisions to make.
Decision 1: Whom do you trust most?
Many people choose a family member to speak on their behalf. The important thing is to select someone you trust to represent you and honor your own preferences, whether a family member, partner, friend, member of the clergy, or other individual.
Next, document your decision and appoint that person by filling out a state-specific form known variably as "health care proxy," "power of attorney," or "appointment of health care agent." (You can download your state's form free of charge at www.caringinfo.org.) A type of "advance directive," this form usually must be witnessed, but not notarized.
Decision 2: What are your wishes about life-prolonging health care?
Imagine you are injured or have a massive stroke; your brain suffers severe bleeding and you go into a permanent coma. Doctors conclude that, while they might be able to keep your body alive, your brain will never recover.
Or, say you are newly diagnosed with Alzheimer's disease, heart failure, or cancer. People now live with such diseases for years, sometimes decades, thanks to modern medicine. But many serious diseases eventually lead to progressive fatigue, sleepiness, and loss of function and independence, including loss of ability to make decisions and, often, to communicate effectively.
In considering such scenarios, ask yourself these questions: Would you want everything possible done -- including using whatever machines were needed--to prolong your life, regardless of its quality or your ability to recognize and interact with loved ones? Or would you want care focused only on your comfort, without any measures to prolong your existence, because you feel it would not be a life worth living? It is important to think about which kind of person you are; both options are equally valid.
Put it in Writing
Because technology to prolong life exists, we each have a responsibility to make our wishes known. A good way to do this is to write a letter addressed to your family, partner, friends you trust, and your doctor, saying what you feel is a life worth living. Include what matters most to you in the event that you lose normal brain functioning with no hope of recovery.
This letter should be scanned into your medical record to ensure that if your doctor is on vacation, retired, or deceased, the next person providing your medical care will have access to this information.
You Are the Expert
Advance care planning helps you take control of the care you may need in the future by giving you the opportunity to name the person you trust most to make decisions on your behalf, if needed, and to tell your doctors and loved ones what you feel is a life worth living. Who is the expert on that? It is not your doctor, your grown children, or even your spouse -- it is just you.
And as much as we prefer not to dwell on the fact that we will all die someday, advance care planning can make a potentially difficult, challenging, and painful process easier for the people we love.