The ultimate in patient empowerment: advance care planning

Some years ago, my husband and I sat with his mother at her kitchen table and went over advance care planning documents her doctor had given her. She was in her mid-70s then, living independently but managing several chronic health issues.

The documents included a living will, which specified the kind of care she wished to receive – or not receive – if she were unable to make her own decisions. Initially, she said she would want every effort made to keep her alive, no matter what. I worked in health care, and while I am not a clinician, I was able to talk about the choices, explaining what it actually means to be on a ventilator, to have a feeding tube, to be resuscitated. During the discussion, she clarified her thoughts. If there were no chance of recovery, she said, she wanted none of that. She also formally named my husband – her son – to be her health care decision-maker should she become incapacitated.

As year two of the COVID-19 pandemic gets underway, it’s more important than ever for people to consider what matters to them at the end of life and discuss their wishes with those closest to them. While people of advanced age or with chronic illness, like my mother-in-law, might be more attuned to thinking about such issues, it’s important to note that, as of early March, more than 78,000 COVID deaths in the U.S. were among people aged 45 to 64, and nearly 12,000 among those younger than 45.

Creating an advance care plan is the ultimate act of patient engagement and empowerment. Yet, a 2018 survey of U.S. adults found that while 92 percent of us think it is important to discuss and document our wishes through advance care plans, only 32 percent have had such a conversation.

Similarly, another study found that 99 percent of physicians think it is important to have these discussions with patients, yet most have never received formal training in this area and are too pressed for time to do so. This is true despite the fact that Medicare and some private insurers will reimburse physicians for time devoted to end-of-life care.

Fortunately, people do not need to wait for a physician to begin the conversation. Researchers note that web-based platforms are helping people get started in the privacy of their own homes and on their own timelines.

For example, The Conversation Project, a national program based in Massachusetts, provides toolkits and links to each state’s resources. The important thing is to start thinking, and then start talking. Have a conversation with those closest to you. Take the time to consider “what matters to you” at the end of life. Formally documenting your decisions does not mean you cannot change your mind – and your plan – as your circumstances change.

Thinking about worst-case scenarios – and having the sometimes-uncomfortable discussions with key people in our lives – can save considerable heartache, stress, and guilt for loved ones should the unexpected happen. It also helps physicians to best practice patient-centered care when they know their patients’ values and goals.

Last year, a couple of months into the pandemic, my mother-in-law died in the Florida assisted living facility that had been her home for several years. She died not of COVID-19, but of multiple chronic illnesses. With the help and compassion of hospice workers, her passing was as peaceful as it could have been – for all of us. She died in a place she was familiar with and comfortable in, in part because of the conversation that began years before at her kitchen table.

Patricia McTiernan is a communications specialist.

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