My mother passed away last Wednesday. She was found unresponsive on the floor of her kitchen early Tuesday, in severe septic shock from untreated peritonitis and a perforated intestine. Although she was admitted to the intensive care unit and given aggressive medical treatment, she never regained consciousness. Because of her age and her poor health – exacerbated by the fact that she had ignored the signs and symptoms of sepsis for nearly a month – her body was simply not strong enough to fight the infection. Less than thirty-six hours after she was admitted to the hospital, we let her peacefully and painlessly slip away.
I’m telling you this story not to garner sympathy, but rather to share with you a lesson that I learned. Because my mother was unmarried and because she was unable to consent for treatment, according to the laws of the state in which she lived I was the de facto decision maker about her medical care. This is quite common. Unless otherwise indicated, family members – usually the spouse, adult children, adult siblings, and parents, in that order – are assumed to be the surrogate decision makers for a patient who cannot provide consent.
The decisions that I had to make, most of which were made at 2:30 in the morning after chatting briefly with the clinical care team, included the decision to make my mother DNR (‘do not resuscitate’) after her heart stopped for the third time. I also made the difficult decision to stop aggressive medical treatment and to move my mother to comfort care after a neurologist concluded that she had suffered extensive and irreversible brain damage.
A surrogate like myself is supposed to make these decisions by using a concept that we ethicists call substituted judgment: they should try to make the choice that the patient would have made had they be able to make decisions on their own behalf. Hopefully, I made the same decisions about my mother’s care that she would have had she been conscious and able to speak.
In reality, however, all of my decisions were made without any sense of what my mother would actually want. Although I am a bioethicist – part of my job involves teaching students about the importance of planning for situations like this – my own mother had not made any decisions about her end-of-life care. For example, she did not have an Advance Directive. Sometimes called a Living Will, an Advance Directive is a legal document that specifies the type of medical treatment a patient would want or not want should they be unable to make decisions for themselves.
My mother was not alone in lacking an Advance Directive. According to a recent survey of nearly 8,000 Americans, over two-thirds do not have an Advance Directive, Living Will, Health Care Proxy or similar document like the Physician Orders for Life-Sustaining Treatment (POLST) form. They don’t have these documents because they don’t know about them or because they assume their families already know their end-of-life wishes.
Unfortunately, the few studies that have looked at the accuracy of family decision-making have also found that most health care proxies, like myself, might as well just guess what their loved one wants. Surrogate accuracy is only slightly above chance, with rates of accuracy running about 50-65%. This is largely because too many people avoid conversations about end-of-life planning. Talking about death is difficult even under the best of circumstances, let alone our own end-of-life wishes. Even when we do touch upon the issue, it’s usually some glib remark about “not wanting to be a ‘vegetable’”.
This was exactly the situation that I faced. Other than an off-the-cuff remark over a decade ago about the Terri Schiavo case, my mother had never spoken about her end-of-life wishes with myself, my sister, or even her unmarried partner. Moreover, because my sister and I had a relationship with my mother that could be described as complex at best and tumultuous at worst, the likelihood that she would actually have been open to having this conversation was slightly less than zero. I knew she wouldn’t want to spend years in a persistent vegetative state, but I had no idea if she would want to be intubated, I had no idea if she would be willing to spend months in rehab, and I had no idea if she would be happy even if she had to spend her remaining years in a long-term care facility.
I’m at peace with the choices that I made regarding my mother’s care. Given the severity of her situation, it was not a question of if she would pass away. It was a question of when, and the decisions that I made in consultation with the critical care resident ensured that her last hours were comfortable and pain-free.
I consider myself lucky in that regard. While I regret the fact that I will never again have the chance to address the unresolved issues that made my relationship with my mother so challenging, I wasn’t forced to make any decisions that could have resulted in weeks, months or years of a slow and lingering death. Sadly, far too many spouses, adult children, and other surrogate decision makers aren’t so blessed; they spend months or years as caregivers and health care surrogates, watching a person they love battle illness without ever knowing if they made the right decisions.
And this is why it is so important that we all talk about end-of-life decision making with our loved ones, no matter our age or current health status. We all expect to live for decades more. But life is unpredictable, and the only thing that is certain is that none of us get out of it alive. While it might be difficult to contemplate our own mortality, we owe it to those that we love to make sure that they know what we want when the inevitable comes.
[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 15, 2016, and is available on the WAMC website.]