When doctors should ignore end-of-life directives
Things are not always black and white during a health crisis
Sheila was very clear about her wishes for the end of life. She was 88 years old and a former hospice volunteer. When her time came, she wanted no ventilator, no feeding tube, no CPR. She even wrote down her wishes — NO LIFE SUPPORT! — in an advance directive, in case she wasn’t able to say what she wanted. (Advance directives such as the one Sheila wrote are common; many hospitals even use their completion rates as a quality metric.)
But when sudden difficulty breathing brought Sheila to the emergency room, doctors didn’t follow the orders on her advance directive. She was intubated and admitted to the ICU on a ventilator.
And it turns out, that was exactly the right thing to do.
As a physician, I know that advance directives are most helpful in situations where it is clear that death is inevitable. They are intended to protect people from receiving “life-sustaining treatments” such as ventilators and CPR, in situations where those treatments only prolong the dying process.
When things are unclear
But many decisions about life-sustaining treatments must be made in situations like Sheila’s, where there is uncertainty about outcomes.
At the time her doctors had to make a decision, it was not clear yet whether Sheila was at the end of her life. So the doctors had a conversation with Sheila’s daughter, the surrogate decision-maker named in her advance directive. They explained the uncertainty of the situation.
I expect they said something like this: “We need a few days to understand what’s wrong and whether it is reversible. If it is, we may be able to return your mother to her recent quality of life. Is that something she would value?”
Luckily, Sheila’s daughter could draw on many conversations with her mother about the quality of her day-to-day existence. She had a good sense of Sheila’s values and the minimum quality of life she would find acceptable.
“Do what is needed,” she instructed the doctors. “In a few days, we can see.”
A turn for the better
Two days later, Sheila was out of the ICU, taking new medications to help her weakened heart, but able to breathe on her own. Soon after that, she returned home, where she slowly regained her strength and was able to resume her life.
When I visited her at home six months later, she had just completed a book she’d been working on when becoming ill. She was hoping for an early spring publication date.
“I know my time is getting shorter, but I’m still enjoying life,” she said when I asked whether she had any regrets about her time on life support. “I’d do it again if it would get me back to this.”
Sheila was lucky. If her doctors had used only her advance directive as a guide, she might not have been intubated and probably would not be here now.
Advance directives and your surrogates
This is not to discourage anyone from making an advance directive. Even if political forces eliminate Medicare reimbursement for doctors who spend time discussing them with patients, advance directives will remain an important part of the picture: They ensure that decisions about medical interventions at the end of life are in the hands of patients and that patients’ values drive these decisions, even when they can’t speak for themselves.
However, making sure your surrogates know what is important to you is critical. They will be the ones to tell your doctors whether to use life support in situations of uncertainty.
Their judgments need to be informed by ongoing conversations about whether life is still worth living and what makes it so, whether you’d be willing to try life support as a bridge back to your current life or not, where you draw the line. The answers to these questions will change — and should change — over time.
Sheila can imagine a point in the future when she will grow too weak or dependent to want to extend her life, even if extending it is possible. For now though, she is quite content to be starting on her next book and waiting for the crocuses to push up through the melting snow.