As a palliative care doctor in the Covid-19 era, I meet many families struggling to make decisions for loved ones who become too sick, too fast, to make their own health care choices.
Recently, the son of a critically ill patient asked that we postpone major decisions about his father’s care until he had improved enough to participate in the conversations.
“I’m not sure what he would want,” the son said. “We never talked about it.”
It’s hands down the most common thing I hear from families.
Seeing the patient day after day, attached to a ventilator and endless tubes and lines, was like watching a passenger on a runaway train. He died after 17 days in intensive care, never improving enough to tell us whether the extended life support he was getting was actually acceptable to him, let alone to say goodbye to his family.
A Kaiser Family Foundation study reported that only 56 percent of adult Americans have had a serious conversation about health care preferences, 27 percent wrote down their preferences, and just one in 10 discussed them with a health care provider.
Many families are surprised to discover that a standard living will doesn’t provide specific guidance on the numerous decisions that must be made when a person is critically ill and may require life support.
The most powerful thing that patients and families can do to take control of their health care is the simple act of thinking through what is most important if they become seriously ill and identifying a person they trust to speak for them if they can’t speak for themselves.
Now that we’re living through a pandemic, having this conversation has become especially urgent, when mild flulike symptoms can turn into life-threatening respiratory failure within hours.
Before Covid-19, we often had the luxury of time to talk about a patient’s values and priorities. Family, pets, being at home, independence and faith were at the top of almost everybody’s lists.
Some people say it’s most important to live as long as possible. Others feel most strongly about quality of life. They worry about suffering for no purpose, becoming burdensome, or surviving in an unacceptable condition.
With Covid-19, the window for having these conversations often closes before anyone realizes it was open. Hospitalized patients can’t receive visitors and are often too ill to communicate by phone. Once on a ventilator, most can’t communicate at all.
Many families thrown into emergency decision-making often default to intensive care as the “safest” route, not realizing the risks and burdens of this choice.
I see many families place their hopes on a ventilator keeping their loved one alive. Ventilators can be lifesaving. But they also come with risks. Because of limited and fast-changing data, the risk of dying from Covid-19 once on a ventilator is a moving target. So far, published data from the United States suggest about half of patients on ventilators did not survive their illness, and survival odds decreased with age and existing chronic health conditions. Most who survive require weeks to months in a skilled nursing facility. Recovering patients may struggle with memory loss, post-traumatic stress disorder, and routine activities like walking and eating. Many will never return to their prior quality of life.
Knowing how unpredictably Covid behaves, I urge you to assign someone as your backup decision maker. Talk to that person now about what matters most if you become seriously ill, and what is essential for an acceptable quality of life.
Call it “The Talk.” The conversation may feel awkward at first. There’s no one-size-fits-all answer. But know that having “The Talk” means if difficult decisions must be made on your behalf, they will reflect your wishes.
The goal of “The Talk” is to be specific about what matters most, because “quality of life” means something different to every person.
An 87-year-old man with lung disease said the only reasonable outcome was if he could continue living independently on his two acres and chop his own firewood.
A 36-year-old mother with cancer said as long as she could feel her children’s little bodies against her, that life was worth living.
After our first cluster of Covid cases in early March, I called my mother, a retired hospice social worker in California. She had always been clear about her wishes, but checking in seemed like a good idea.
We chatted about where she was buying groceries, how her friends were doing, and what TV shows she was watching.
“Well,” I finally said, “What are you thinking about Covid-19?”
“I’ve been worrying,” she said. “I’ve never wanted a ventilator, but maybe it would help me if I get Covid-19.”
“This is hard,” I said. “What’s most important to you if you get really sick?”
She spoke about family, independence, living at home rather than in a facility, and avoidance of pain. She worried most about what her life might be like if she survived after prolonged life support.
We talked honestly about ventilators and Covid-19. She decided that her prior wishes were unchanged.
“I feel better about this now,” she said.
I did too.
Tips on Having ‘The Talk’
“The Talk” can feel awkward. Here are some tips to help you or your family member think through what you or they would want:
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Who is your backup decision maker? If you have not assigned a “durable power of attorney for health care,” it falls to your legal next of kin. In the state of Washington, for example, your legal next of kin is your spouse or state registered domestic partner, then children who are at least 18 years of age, then parents, and then siblings. In most states, the health care proxy document needs to be notarized or witnessed by two people unrelated to you.
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Have you completed a living will? Does it reflect your wishes? Who has a copy?
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Talk with your backup decision maker about your wishes. Share with them what is most important to you, for example: being at home, being with family, living as long as possible, being able to say goodbye. Honoring Choices Pacific Northwest and the Conversation Project offer helpful guides to get started with these conversations and to document them.
Laura Schellenberg Johnson is a palliative care and internal medicine physician practicing at EvergreenHealth in Kirkland, Wash.
