Death is inevitable, but we are perhaps the first generation in human history that has some say about how, when, and where we die. This is readily arranged by completing free legal documents known as Advance Directives, which are available in every state for decades. Unfortunately, only about 40% of Americans overall – and about 20% in communities of color – take advantage of this tool for empowerment, control, and respect for individual values. Our culture celebrates personal autonomy and freedom; yet in this one area, we collectively abdicate that opportunity.
As an emergency medicine physician for over 40 years, I’m accustomed to making difficult decisions, sometimes under time pressure, especially when it comes to managing advanced illness in life-and-death situations. I want to know what my patient wants and how far should I go to save them.
Too often when such a patient arrives, precious time is lost trying to find that out. I’ve seen frustrating and easily preventable episodes of less than optimal care given because that key information was missing. I’ve seen families thrown into conflict and crisis when suddenly faced with these decisions. Clinicians want to respect their patients’ wishes, and we strive to do our best to communicate with patients and their families.
When I became a state legislator in Maryland between 1995 and 2019, one of my goals in office was to bring more attention to this issue. People would ask me what issues I was working on, and I’d respond with the usual listing. At the end, though, I’d always bring up advanced medical care planning. It’s not easy to be the one to initiate a chat about death and dying. Some thought that would be political suicide. Politicians prefer to be at celebratory events involving ribbon cuttings, but I was talking about the end-of-life.
But an issue is an issue, and ultimately, people thanked me for providing a safe space for them to share life-cycle events that almost all had been through with a family member and which they knew they would confront eventually. That’s why I’ve admired people like Betty Ford who made it possible to talk about breast cancer, and others who can bring up personal issues like a family member with addiction or one with a birth defect.
Consider what kind of care you’d like if you couldn’t speak for yourself, and who you would want to represent you if that were to happen? These are tough questions, but ones that each of us should consider before being confronted with a medical crisis. These topics are even more compelling during the pandemic because COVID-19 patients may not be able to communicate, and families are not allowed at the bedside.
If you don’t take proper action, decisions about your care could be made by a government agency, an insurance company, a hospital ethics committee driven by values that may not be yours, relatives you might not want in that role, or it could be the doctors and nurses who don’t know you and will be without your guidance.
April 15 is tax day, and you’ve likely planned for that. April 16 is now recognized as “National Healthcare Decisions Day.” It’s there to remind us to take these steps for ourselves and our loved ones, linking death and taxes in a useful way.
The benefits of Advance Directives are manifold. Care is personalized, values are respected, intra-family conflicts are minimized or avoided, clinicians know what kind of care patients want, the racial disparity will decrease, and the end-of-life experience becomes more holistic, manageable, and compassionate. Health care costs are reduced the right way (some estimate 10% of Medicare alone), by respecting our wishes and values.
So, have you completed your advance directive? If so, please update. If not, these forms are available from a variety of sources including your state or local department of health; AARP; faith-based organizations, your doctor or hospital, and various online ones (my personal favorite is mydirectives.com).
These forms are all available at no cost. The forms are legal in every state, and attorneys are not required. These take a few minutes to fill out, but it’s time well spent. You can update your directive anytime as your life circumstances change (the most recent one is the one that applies).
This common-sense approach empowers us to do something personal, valuable, and meaningful to help ourselves and our loved ones should the need arise. Taking these steps is something every American adult can do right now as part of their personal responsibility and planning.
It’s not just for old people. The three most famous cases in American medical-legal history on this subject were women under 30 – Karen Quinlan, Nancy Cruzan, Terry Schiavo. When my children turned 18, I gave them their own advance directive forms to complete, and one pointed out that she’d already considered this when she made organ donation decisions upon getting her driver’s license.
We can have both the best of modern medicine and the choice of when enough is enough. If it turns out that I’m in a terrible car accident or have a heart attack, then please call the ambulance and take me to the hospital. But if I have advanced terminal cancer, long past any hope of recovery after all treatments have been tried and failed, I don’t want to die in a hospital tied to tubes and machines, suffering every minute to the end, cut off from the people who care about me. When the end comes for me, I want to be at home, pain-free, with my friends and family close by.
Talking about end-of-life care is a topic we collectively avoid. That’s understandable, death is a hard subject to approach. But that doesn’t mean we shouldn’t take advantage of the tools we are afforded today. After all, you are the one person who can complete your Advance Directive; no one can do it for you.
When finished with your taxes, take a few minutes to consider your Advance Directive status. Get a form, complete it, share it, and then rest easy. You’ve just completed one of the most important tasks everyone ought to do. You’ve taken back control of your health and your life.