I was a brand-new doctor, in my first week of residency after med school, working overnight in the ICU. I called home to check on my mom, who for years had been dealing with breast cancer. The cancer had reached her lungs and made breathing more difficult. “I think you need to come home,” my sister said, her voice cracking. “Now.” Within an hour, I was frantically driving the three hours to reach Mom. She died the next morning. This happened before I knew what end-stage cancer looked like. No one had helped us understand that death was so near or prepared us for this moment.
I think my mother knew. I think how lonely it must have been for her to bear that burden all alone.
Physicians walk a fine line between being honest and being a source of possibility, of hope. It’s easy to want to lean into the hope: It makes us feel good to give good news rather than face the hard truths. But when we as doctors let go of the realities of illness, when we can’t face the truth ourselves, we let patients and their families down, often when they need us most.
Because of my mother’s death, I shifted my focus in medicine to confront this very problem — to change the culture at the end of life. As a palliative care physician at Temple University Hospital, I care for patients with life-limiting, often fatal illnesses. I work hard to help their surgeons and specialists recognize these realities and to share the patients’ expectations and goals in a kind and honest way. I also help the patients and families understand their circumstances, so they can make choices that are right for them.
Frankly, we still have a long way to go in changing the culture. Too many times in our hospital, I’ve seen this scenario play out: Doctors start with a goal of pushing mortality’s limits — to cure this or shrink that, to try the latest high-tech answer. But somewhere on this yellow brick road, patients get stuck. Maybe they’re too frail, or can’t eat like they used to, or are dependent on a ventilator to breathe or on medication to keep their hearts beating. Instead of starting the conversation by explaining that this is what end-stage disease looks like, physicians become defiant, refusing to let go of the possibility that there may be something else around the corner — a burst of yet-untapped energy, a therapy that hasn’t been tried, a chance the patient may get better. We often keep pushing without knowing if our patients want to keep pushing.
I know we can do better, be braver, be better prepared ourselves to prepare our patients and their families. With better communication, more transparency and more candor, we can find a way through these impossible situations. That’s what I teach our students and doctors, and that’s where hope lies. Patients and families want to know what to expect, even if they’re afraid to ask. They want to have time to prepare, to focus on forgiveness and farewells, and to define their own ending.
In treating end-stage disease, I see unfair things happen to people every day, but I also bear witness to remarkable love and resilience.
I spoke with a patient named Eileen three weeks after she arrived for surgery to remove her diseased intestine. I knew her family well by then. I met her on day two of her admission, but it took weeks to get to the point where I could have a conversation with her. The surgery team was skilled — but also provided an accurate picture of how tenuous her life was, day to day. We explained that if she continued to seek treatment, she would stay in the hospital, likely die in the hospital. Doctors would be trying to place Band-aids on a ticking time bomb. After letting it all sink in, she summoned her team and family and said, “I want to go home.”
The day she left our hospital, she spoke about being with her grandchildren, and how she wanted to look out into her yard at her favorite bird feeder and just watch the life around her. Her smile that day as she left — pure and full of relief — startled me. It was so full of hope. She was in charge of her life (and death) once more.
Mary Kraemer is co-director of the palliative care team at Temple University Hospital.
Published as “The Stories They Tell … ” in the May 2018 issue of Philadelphia magazine.