“Do I want them to administer CPR if my heart stops?” My mother looked up from the advance care planning forms, her brows knit in confusion. “What does that really mean?”
My mother had successfully worked through much of the paperwork before us, including selection of her personal health care proxy, with little difficulty. Earlier in life, she’d been vice president of a large bank. Now, in her late 80s, my mother was still known for her shrewd business acumen. She kept a watchful eye on the market and still managed her closest friends’ portfolios. She’d already consulted with my father, a mechanical engineer, for his insight in the matter.
My parents were a savvy, highly educated couple. But after reviewing the advance care planning form, they recognized the potentially weighted nature of the questions. They didn’t know what they didn’t know, yet they sensed greater complexities at play. Neither knew how to guess at the more obscure implications.
It was time to bring in their daughter, the clinician.
As a longtime emergency physician and now as Chief Medical Officer at AARP Services, Inc., I have always been an advocate for advance care planning. It matters. But if I’m honest, I’d wished I could support my mother solely in my role as her daughter. I’d wanted to leave the clinician role behind while accompanying her on what I anticipated to be a difficult journey. But when my mother was diagnosed with lung cancer, and my sister-in-law’s ovarian cancer was discovered, I assumed a new role for my family: The Translator. I alone was fluent in medical-speak and understood the underlying mechanics of the technical terminology included in the documentation. As time went on, I came to understand the translation process as far more encompassing than parsing medical phrases into digestible units of understanding. This process required an understanding of what really mattered to the individual, while identifying the medical choices that best accommodated those preferences.
It’s easy to forget the layered nature of end-of-life discussions. On the surface, it may appear as simple as picking Treatment A or Treatment B. However, the mere presentation of advance care planning paperwork may signal an epiphany about one’s mortality.
I watched and listened as my mother and sister-in-law puzzled through various scenarios. What were the consequences of having a feeding tube placed? What were the chances of long-term survival after being placed on a ventilator? My mother and sister-in-law couldn’t anticipate the outcomes of these decisions.
These discussions are not just the “how” or what immediate action to take, but a fundamentally deeper question of one’s mortality, meaning, and having to face choices that can no longer be vague and unspoken.
The reality is not everyone can face the choices. It’s not always easy to have these conversations. That’s why the true value of advanced care planning is for the individual and family to truly understand what matters. These discussions should always be judgment-free and reassure loved ones that there is no “right” or “wrong” answer. These decisions can be changed and adapted to fit the circumstances at any time. Once we know what’s important to our loved ones, we have a larger context that helps us interpret their preferences about treatment.
To elicit that context from my mother and sister-in-law, I’d found it most helpful to distill all the forms’ possible choices down to three guiding questions: “What’s most important to you,” I asked. “To live as long as possible? To be pain-free? Or to preserve functionality as much as possible?”
When my mother shared her preference to avoid pain, I was surprised. She was a tough woman. I assumed functionality and independence would be her most important goal. As a child, she’d loomed large in my mind as all-knowing and omniscient. I have a vivid memory of her taking on the world with a broken leg, unhampered and unimpeded as she competently crutched through life, moving from the boardroom to the kitchen with relative ease. She never asked for help. She never complained. But now, what concerned her most was the possibility of unrelieved pain.
Our conversations continued throughout the course of her treatment. Her life stories unfurled like a rich tapestry, knitting us even closer as she described the struggles, anxieties and worries she’d struggled to resolve throughout her life. She described being a war refugee, an immigrant in a foreign culture, learning a new language, being a penniless student, and sleeping in a restaurant to earn her tuition. She recalled what it was like being a woman VP in banking, and how she had to go through the kitchen to attend management meetings held in the men’s club. I marveled at her resiliency and savored all the insights she shared.
When my mother developed painful mouth sores, I worked with the many clinicians on her team to find a viable solution. Finding the right soothing, pain-free mouthwash, identifying the ideal choices of food and spices, and learning how to apply medication to treat pain locally were all key to her regaining enjoyment in the pleasure of eating, drinking and even talking without pain. This is what her advanced care plan meant to my mother in her last days.
On the other hand, my sister-in-law prioritized functionality above all else: preserving her ability to independently take a bath or shower on her own. As her cancer progressed, declining mobility made it increasingly difficult for her to get in and out of the tub. Subsequent treatment decisions took her goal/benchmark of independent bathing into consideration. Did we want to place an IV to administer intermittent fluids? Yes, if it gave her sufficient fluid volume and stabilized her blood pressure enough to accommodate the bath she held dear. We lobbied for physical therapy to preserve her muscle tone so she could continue standing on her own. When she was unable to stand, we scoured all available resources to find durable medical equipment to accommodate her baths.
Until the end, we honored her wishes by prioritizing medical decisions that supported her preferences.
My loved ones’ choices were simple, straightforward and meaningful. To execute on their choices was far more demanding and complicated for the health system and clinicians to deliver, especially in our fragmented world of today.
Now, I am so very grateful we had these conversations. It provided a space to renew my relationships and to relearn what mattered to my loved ones. Initiating these conversations and having prior knowledge of my family members’ preferences proved to be not only a precautionary measure, but an invaluable gift. As a daughter, I can attest to the power of advance care planning in providing goalposts, building rapport and conferring peace. Our family was spared the agony of having to guess at our loves one’s wishes at the 11th hour. We had the freedom to move beyond a focus on medical therapy and focus instead on our loved ones. We used our remaining time together to make precious memories. Thankfully, we have no guilt or regret as we reflect on their passing.
Not a day passes that I don’t miss my mother and my sister-in-law. But I take tremendous comfort in knowing I honored their wishes until the very end.
Isn’t that what “best” possible care really means?