We had been meeting for a number of months when she posed the question. We met in person one time, but other than that single appointment, all of our meetings were virtual. She had metastatic cancer. She didn’t actually want to know that her cancer had returned. The metastatic disease had been found when they couldn’t complete her colonoscopy and ordered a scan to see why. She helped me understand the depth of her medical trauma by telling me that she couldn’t stand to walk in the cancer center as it brought back all the trauma of her initial diagnosis and treatment. I’m sure other patients felt similarly, but few named the trauma of the treatment experience. She asked if we could do virtual visits. She was struggling to tolerate treatment for the disease she didn’t want to know was in her body. Now that she knew her cancer had returned, she felt obligated to try treatment, but she hadn’t tolerated treatment well the first time and was struggling again with the potential benefits versus the side effects. It was, of course, also hard to delineate side effects from symptoms of progressive disease. Was the nausea from meds or from the disease in her belly? She had switched her cancer care to another facility, but we continued our virtual palliative care appointments. She posed the question that I still think about years later during one of these routine visits when she was sharing her struggles and her uncertainty about whether to continue treatment. She was describing the symptoms she was experiencing that were preventing her from participating in her life. She asked the question that I’m still not quite sure how to answer: “How do I live when I know that I am dying?”
In my experience, when we talk about this question, we usually keep the conversation safe by keeping it abstract. The closest that I’ve gotten to truly experiencing this question is meditating on my own death with Roshi Joan Halifax during her retreat on being with dying. Even though we are all dying and the question is relevant for all of us, many of us picture death as being far away in the future, so the question feels like a thought exercise—an important one, but still somewhat abstract. For those who’ve been given a limited prognosis, the question is no longer abstract. My patient talked about the activities that brought her joy: being with her husband, going to the senior center to play bridge, connecting with other couples, and loving her niece and nephew, who were like her own grandchildren to her. And yet, as much as she tried to participate in these things, her limited prognosis often seeped into these encounters. It was as though she was participating and at times simultaneously watching these activities, knowing that she wouldn’t be part of them much longer.
One way of living with a limited prognosis is to, at least momentarily, forget about the prognosis, to lose oneself in the moment. Always holding the prognosis in focus risks allowing it to steal the joy from the moment. And yet, always pushing the prognosis away risks losing the potential gifts of truly knowing and accepting that time is limited. Always pushing the prognosis away may be a coping strategy and a way to protect oneself temporarily from the grief and pain, but ultimately does not allow for healing or for using time intentionally. When we ask the question “How do I live when I know that I am dying?” we delve deep into the pain many feel when they know their time in this life is coming to a close, and it offers the possibility of making intentional choices about how to spend that precious time. It’s a powerful practice and a potential doorway into healing.
As a palliative care physician, I often talk to patients about holding space for two possibilities: leaning into treatment and the hope that time is long and also thinking about what they would want if treatment doesn’t give them more time. I tell patients that truly holding both of these possibilities at the same time is quite challenging. We can approach by switching back and forth: leaning into treatment and the hopes of treatment and feeling all of the emotions that brings, and also, at other times, creating time and space to consider the possibility of dying from their disease and feeling the emotions that brings. Within that space lies clarity about what really matters right now. Within that space is the possibility of experiencing joy and meaning alongside the pain. Even when we want death to remain far in the future, giving voice and space to the possibility of dying gives us choices in the present moment about how we spend our time and energy. If we, as physicians and human beings, only focus on treatment and the outcome isn’t the desired outcome (we don’t achieve cure or remission or treatment isn’t tolerated or any other undesired outcome happens), then those we treat have lost the possibility to try to live while they are dying and to be intentional about who and what matters in their life.
My patient died of her disease several months after first posing this question. We revisited the question many times before she died. Several years later, the best answer I’ve come up with is to allow space for the possibility of death and allow it to show us what matters and then, as much as possible, say yes to what matters. Say yes to sitting outside. Say yes to being with family. Say yes to whatever it is that brings meaning to life. Those moments may not look exactly the way we want. We may want to camp, and we may be limited to simply getting to a park for a little while. Or we may want to go out with friends for lunch and have to opt for a cup of tea with them at home, but even though they look different, they still hold tremendous meaning. I’m so grateful that I had the opportunity to connect with this beautiful soul and her ability to articulate difficult truths and to delve deeply into the pain.
Sonny Miles is an integrative medicine and palliative care physician.
