Living Wills and Their Role in End of Life Planning

"Her living will takes over now,” said the nurse practitioner the morning after my mother slipped into a coma.

I was 51 weeks into 24-hours-a-day caregiving, which included constant decision-making about hospital, rehab and nursing facility admissions as well as readjustments of medication and treatment plans — without a break. Practically every day of caregiving held life-or-death choices.

And, suddenly, there were no more decisions to make. All I had to do was be a daughter. To hold my mother's hand, sing and talk to her, and wait. And when she passed away, my heart, mind and soul were at peace.

My mom's living will said that she did not want life support or to be kept alive when there was no chance that she could survive without life support. And so, after examination and deliberation by her physicians, her final wishes were honored and carried out. It's what she wanted. But her living will was also a gift to me, because without it I wouldn't have been able to let go and wouldn't have known that beautiful peace.

Why it matters

There are many reasons to make a living will: to give guidance to your doctors and health care surrogates, provide clarity and closure to your loved ones, prevent conflict or disagreements among family members, and limit the emotional burden on your closest people at the time of your death.

Most important is that you remain the captain of your own ship, with the authority to dictate how you want to live and die. Considering that the majority of dying people are unconscious, in distress, or otherwise not able to speak, the living will serves as your voice when you may not have one.

Despite all these reasons, only 45 percent of U.S adults have a living will, according to a May 2020 Gallup poll. That means a majority of Americans are rolling the dice on who will be making decisions for them at the end of their lives.

Some simply do not know what a living will is or how it works. A 2021 survey conducted for VITAS Healthcare, a company that provides hospice and palliative care services, found that nearly a quarter of respondents did not know how to go about documenting their wishes for end-of-life care.