Each time I accompany my mother — now in her 80s — to the hospital, she’s asked the same question: Do you have a living will? Sometimes this is referred to as an “advance directive” or a “declaration.” These terms would be familiar to anyone who has ever been to an emergency room or has had a hospital stay.
Confronting this question over and over again, I explored our options. It was only recently that I got my answer — while watching television. I landed on a program where attorney Rita Marker of the Patients Rights Council — a nonprofit end-of-life research organization that opposes euthanasia — discussed the importance of having something I’d never heard before: a durable power of attorney for healthcare.
Hospitals typically offer two documents to set up end-of-life care: a living will, or a durable power of attorney. When I asked my friend and former colleague, Patrick Lee, a bioethics professor at the Catholic Franciscan University of Steubenville (Ohio), which is better, he was clear: a living will is not prudent. A living will expresses your own wishes — stipulated ahead of time but only to go into effect if you become unconscious or incompetent — for treatment under different health scenarios. The problem is, you’re dealing entirely in hypotheticals, signing over permission for doctors to make major care decisions — like whether to keep you on life support — without knowing what that situation would look like in reality. In so doing you’re in effect stacking the deck against your own life and its outcome since sight unseen you’re authorizing an as-yet-unknown physician or hospital administrator to dictate your care.
A wiser choice is the durable power of attorney, which provides better protections. Of critical importance is that you name an “agent,” hopefully a trusted family member or friend, whom you designate to act on your behalf in the event you become temporarily or permanently incapacitated, sharing with them your wishes in advance of any medical event. Importantly, limitations are placed on the agent. This person doesn’t have the authority to direct the intentional ending of your life through lethal injection or a drug overdose. Further, should you have a Do Not Resuscitate (or DNR) order, the agent may not direct you be denied food or fluids for the purpose of causing your death by starvation or dehydration, which can lead to an agonizing death, as happened in the 2005 case of Terri Schiavo when her feeding tube was pulled and she died 13 days later.
Fast forward to today. End-of-life questions apply to anyone and everyone, no matter the person’s age. And more of us are becoming caretakers as our population ages. It is of vast moral and social concern that we navigate aging with respect for individuals’ wishes and the best outcomes for their care. That’s why I have researched this other option, not just for my mother, but for myself and the other members of my family. I hope no family finds itself in the position of Terri Schiavo’s — fumbling to make life-or-death decisions for someone who could no longer advocate for her own care.
Thankfully we have a strong option, one that legally binds and ensures our end-of-life values and wishes are being honored, respected, and, most importantly, met. To that end, the Patients Rights Council has drafted the Protective Medical Decisions Document (PMDD), a durable power of attorney for health care. It is offered free-of-charge (although a donation is welcome, but not required, to help offset the cost of providing).
In the end, not to make a choice about your final days is to make one. The cautionary tale here is that without having this document in place your fate and those of your loved ones could be decided in ways you never dreamed possible, the outcome potentially turning into an absolute nightmare.
Alicia Grimaldi is a freelance writer and editor currently at home helping care for her mother. She last served as publishing director at a nonprofit social science-research institute headquartered in Princeton, N.J.