Palliative Matters: Episode 5

What Can We Learn from Patients with Serious Illness?

The patients cared for by hospice and palliative care clinicians face difficult, stressful circumstances—laden with the physical, emotional, spiritual and existential implications of a serious illness.

Their doctors can teach them about the medical condition, what treatments are available for it and what are their options, realistically, at this challenging point in their lives. But for experienced palliative physicians like John Mulder, MD, and Jason Beckrow, MD, of the Trillium Institute’s “Palliative Matters Podcast,” patients often have lessons to teach their physicians, lessons that could make them better doctors and better human beings.

“Every case is a new learning experience,” Dr. Beckrow says in this Palliative Matters podcast, “Patient Circumstance”. “We hope to take our learned experience and the science and art of medicine and transfer those gifts of knowledge and understanding for the benefit of our patients. But if we take the time to listen to our patients, often they’re teaching us as much as we’re teaching them.”

Dr. Mulder shares the story of a palliative care consultation he once performed for a patient who had breast cancer, for which surgery, unfortunately, had not produced the hoped-for outcome. In his mind, he had a picture of what he was walking into—the hospital room of a depressed patient in pain, suffering, facing a dim prognosis. Instead, he found a young woman sitting on her bed, comfortably reading a book, almost radiant in her composure and serenity.

“My initial reaction was I must have the wrong room,” he recalls. “I said to her, ‘I have to tell you, I was not expecting you to be this comfortable or radiant.’” The woman explained that the engaged, caring, concerned reactions from her family, friends, neighbors and church members, who had been parading through her hospital room for the previous 48 hours, were something she never expected. And they had deeply moved her. “’The level of compassion I experienced, the coming together… how blessed I am to be part of all that,’” she said.

“The television in the room was showing the devastation in Florida caused by Hurricane Andrew. She pointed to the TV and said, ‘I feel like I’m in the eye of a miracle. I didn’t want this to happen. But if God is using me in this way, that is a miracle, and how blessed I am to be part of it.’”

Not every patient, obviously, will respond with this degree of equanimity to a confrontation with serious or life-limiting illness. But they all have lessons to share about what they have experienced, what they have seen, what they have learned, how they are trying to gain a deeper understanding of their situation, how they are fitting this experience into the narrative of their lives.

The fact that some patients are able to find peace, a degree of acceptance and reconciliation—that is not a lesson that doctors can simply transfer to their next seriously ill patient, who will be experiencing their own mix of emotional responses to their condition and circumstances. But it does teach the doctor that such acceptance is possible. People can and do find their own understanding in ways that are meaningful and valuable to them. Awareness of that possibility may equip the doctor with some acceptance of their own when they go into the next patient’s room to deliver bad medical news.

What Can Be Learned in Life’s Crises?

The mortality rate for humans is still 100 percent, with serious chronic illnesses the contributors to death. Most of us will get our own turn to face a serious illness or other health-related crisis—for ourselves or our loved ones. People generally try not to dwell on these realities in the ordinary course of life. However, the onset of a serious illness may be the impetus for some deeper reflection on our own mortality.

Seriously ill, hospitalized patients often have lots of time between medical procedures to mull on their circumstances. What ensues might be called an epiphany, or a deep insight, or a miracle, as for the patient Dr. Mulder visited. Sometimes it’s an appreciation of the meaning and the value and the legacy of a full life well lived. A sense of completeness. Faith is also important to many patients and may yield a sense that there is no unfinished business left to complete. We know that some people do make peace with their mortality.

“We’ve seen that profound story play out time and again,” Dr. Beckrow says. “Because of that experience, we are more inclined to look out for such stories. Our patients, too, want to find that sense of peace. If you as a physician can demonstrate your understanding, your compassion, your ally-ship with the patient, maybe you can help the patient get there, too,” he says. “We are very fortunate when what we have to give to our patients is gifted back to us. When that happens, it is profoundly meaningful to us.”

Lessons learned at the front lines of the palliative care encounter someday may also be important to professionals in their own lives and the personal challenges they will encounter. Dr. Mulder says such experiences can be humbling to doctors, reminding them of their professional limitations. They need to spend as much time listening to their patients as they do telling the patient what the medical reality is.

“The things I learn the most in these types of encounters revolve around gaining more humility,” Dr. Mulder says. “In this life, grace is given to us. Even though we may be trained, experienced doctors, we don’t know it all. What’s important to patients and the things they teach us often go far beyond their disease or response to the disease.”

The patient has a voice in this process, Dr. Mulder says, and that voice matters. But too often the doctor’s voice can be too directive and hierarchical, drowning out what the patient might have to say. “We as physicians have to be able to take a step back and let the patient step forward and contribute to the conversation. What is most important to them at this time of their life?”