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“We don’t understand why we can’t help him,” the man’s daughter told me through tears.
He was in his 60s with a progressive illness. In addition to serious cardiac and gastrointestinal issues, he had kidney failure and was on dialysis. He had been in and out of hospitals over the last few months, often requiring admission to the intensive care unit and time on a ventilator. Though he had survived each episode, his health had steeply declined.
His disease also affected his cognitive ability; for the previous six months, he had been unable to make decisions for himself. He couldn’t tell us where he was, but he moaned every day that he wanted to go home.
The man’s family watched his life unravel in slow motion. It was clear to them that he was dying, albeit gradually and painfully. They were simultaneously grief-stricken and accepting. Each day, they saw him suffering. “He wouldn’t want this,” they told us. “We want to get him closer to home.” They were isolated from their family and friends. He was too medically complex to be transferred to a local hospital. They drove two hours each day to see him; they were exhausted.
A few minutes now may allow your loved ones to protect you when you’re most vulnerable.
The doctors, nurses, and, most importantly, the man’s family agreed that stopping dialysis and enrolling him in hospice would have been right for him. But there was a catch — his wife was not his health care proxy agent; she was his guardian.
A health care proxy and a guardian are not the same thing, although the distinctions are often nuanced. Anyone can appoint a person as a health care proxy agent by completing a form in the presence of two witnesses. The form takes just minutes to fill out, but it is critically important. If you are incapacitated, the health care proxy agent is empowered to make decisions you would have been able to make as a patient. There are a few important exceptions; for instance, a health care proxy agent cannot prevent clinicians from giving you pain medications if they deem it necessary and you are unable to speak for yourself.
When there is no health care proxy and a legally authorized decision-maker is required, the court can appoint a guardian to serve in that role. A guardian’s decision-making authority, however, is more circumscribed than that of a health care proxy. In other words, the guardian may be unable to honor a patient’s wishes without going in front of a judge. The process is not only adversarial, but also time-consuming. As doctors and lawyers complete affidavits and file briefs, the patient sits in limbo. Clinicians may then be obligated to provide care they, and often the family, deem non-beneficial and inconsistent with the patient’s goals and values.
To be sure, people who are either permanently or temporarily incapacitated need protection. Clinicians and hospitals previously wielded unchecked power. However, my patient illustrates how the system has overcorrected. Among the man’s clinicians and his family, we had an intimate knowledge of his clinical condition and what would have been most important to him. The path forward seemed clear, but our hands were tied.
Yet there are ways to improve the system. States like New York have passed laws to address situations in which patients have not designated a health care proxy agent. These laws specify a list of “surrogates of highest priority,” in other words people close to the patient — spouse, adult children, parents — who can serve as decision-makers and represent their loved one’s interests without guardianship proceedings.
Massachusetts considered such a bill in 2015, but it failed to become law. A similar bill is currently being considered on Beacon Hill and, for people like my patient and his family, we should do all we can to ensure its passage. Let’s shield families from having to go to court to make these devastating choices.
Thinking about getting sicker is emotionally difficult and easy to avoid. Regardless of whether the current bill passes, though, take the time to complete a health care proxy form. A few minutes now may allow your loved ones to protect you when you’re most vulnerable.
The opinions expressed in this article do not reflect the views and opinions of the Dana-Farber Cancer Institute, Brigham and Women’s Hospital, or Harvard Medical School.
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