On the evening of what would have been my grandmother’s 99th birthday, our family raised champagne glasses and toasted her.
“She would have hated turning 99,” my mother said, smiling. We all drank to that.
My grandmother, Edith, had made her wishes clear before passing away under palliative care in her mid-90s. No resuscitation or feeding tubes were allowed. We never had to make any tough decisions—she had already made them for us.
The ways that people choose to approach the end of their lives—and the need to communicate their wishes—is the subject of a documentary film, Being Mortal, which is touring the United States and will be screened at the Paramount Theater at 3pm on March 18, and followed by a panel discussion with experts who will answer questions from the audience.
Kenneth White, associate dean of UVA’s School of Nursing and an expert on end-of-life care, will be part of the panel following the film. I spoke with him the day after my grandmother’s non-99th birthday.
“The whole idea is for people to have the discussion about what they would like were they to be incapacitated or have a life-limited illness,” White says. “We don’t say ‘terminal’ anymore because we’re all born terminal. Some palliative care humor there.”
Often patients prefer every possible means to be taken to lengthen their lives. Others may wish to refuse the discomfort of a feeding tube, or ask not to be given CPR or attached to machines to help them breathe. Ideally, they would have signed some form of a document known as an advance directive
But if no documents are signed and no conversations occur about these decisions, family members may face painful choices as they try to guess at what to do.
White recalls being brought in the previous week to help treat a woman who had suffered a sudden, unexpected stroke.
“She didn’t have capacity to really be able to make decisions for herself,” he says. “…Her prognosis was grave and she wasn’t expected to live too long. My first question of her family that was at her bedside was, ‘Does she have an advance directive, has she spoken with you about what she would want?’ And they said no. This happens frequently. And they said we never talked about it. She was walking and talking and her usual self just a week ago and it never occurred to us that we should have that conversation.”
The time to have the conversation is when people are still healthy, White says.
“If the person makes that decision and puts it down in writing and shares that decision with the family members, then the family members, all they’re doing is honoring their loved one’s wishes,” White says. “They’re not making the decision—they are carrying it out for the person…”
As happy as my family was to carry out Edith’s wishes and keep her from prolonged suffering, she was doing us just as big a favor. By signing an advance directive, she freed us from any moral dilemma or sense of guilt.
Volunteers will also be present at the screening of Being Mortal to help draft advance directives.