When Maryanne O’Hara’s 33-year-old daughter Caitlin died from a brain bleed after undergoing a lung transplant, she and her husband, Nick, were devastated. O’Hara soon set out to transform her grief into a skill set that could help families facing similar pain. She enrolled in a certificate program to become a death doula.
Death doulas offer emotional, physical, and spiritual support to dying people and their families—all without intervening in medical matters. But why is there a demand for death doulas? The answer might have something to do with the struggles borne by physicians when it comes time to reach beyond their medical expertise and support patients and their families through end-of-life care.
While everyone eventually dies, each patient wants to pass in their preferred way, as noted in an article in the AMA Journal of Ethics. But emerging research suggests Americans often don’t die in the ways they hope to. To help terminally ill patients find peace in their final days, experts suggest doctors strengthen their palliative care competency through communication training and other strategies.
In a pinch, physicians might need quick answers to these questions: Why is it hard to talk about death? And when and how should physicians break the news? Here’s what the experts and research say about the challenges and potential solutions that could help physicians handle hard conversations with dying patients.
End-of-life conversations pose many challenges for physicians. For one, a patient’s fear of death may prevent them from asking important questions during a conversation about palliative care. What’s more, experts say that physicians sometimes gloss over crucial details about the diagnosis, downplay upsetting information, or struggle to respond to emotional reactions.
When facing patient death, many doctors also come up against the fear of personal failure, according to an article published in the Canadian Medical Association Journal. But death is inevitable. “Yes, modern medicine can do amazing things, but we are all human beings who live and die,” said Leonie Herx, MD, PhD, president of the Canadian Society of Palliative Care Physicians. “We need to normalize dying and death as part of life. We need to use the D words.”
Still, doctors often feel underqualified to open up end-of-life conversations with their patients, according to the article. Physicians also struggle to pinpoint which patient caregivers should start the discussion.
It all creates a perfect storm for inadequate end-of-life care—and everyone pays the price.
As many as 68% of late-stage cancer patients don’t comprehend the gravity of their illness or how much time they have left, according to an article published by the University of Rochester. This unawareness leads patients and their families to make uninformed decisions about ongoing treatment and palliative care options. Equally illuminating, a physician survey by the John A. Hartford Foundation found that upwards of 50% of doctors have never talked about palliative care with their own physicians.
Next steps for physicians
So, what can doctors do to soothe and prepare terminally ill patients?
Physicians can relieve some of the pressure by thinking of palliative care conversations as pieces of an ongoing dialogue, instead of a sole occurrence, said Caroline DeFilippo, MD, an internal medicine physician, in an article for KevinMD. A gradual approach to end-of-life care over the course of many visits normalizes the process for both patients and physicians, providing proper time for everyone to digest information. This approach creates the space for patients to sit with their options and make decisions that best suit them, instead of managing big questions under pressure during a health crisis.
While there is no one-size-fits-all approach to end-of-life conversations, doctors can determine when it’s time to initiate the talk by using the Readiness for End-of-Life Conversations Scale, found in a study published in Frontiers in Psychology. Researchers found that caregivers were less likely to engage in discussions about palliative care as death became a closer reality, so it’s best to start sooner than later. Furthermore, patients who practiced gratitude displayed more willingness to participate in end-of-life conversations. Physicians may want to prime their patients for these dialogues with gratitude-based exercises.
Dr. DeFilippo also suggests physicians learn about state-specific Do Not Resuscitate (DNR) orders and other legal protocols. For additional support, doctors can also turn to national organizations such as:
The future of AI in palliative care
In the near future, doctors may find the perfect training module for palliative care conversations in an unlikely place: their computers. Researchers at the University of Rochester are fine-tuning an artificial intelligence (AI)-based tool called SOPHIE (Standardized Online Patient for Healthcare Interaction Education). SOPHIE is an interactive virtual patient with late-stage cancer, designed for physicians to practice discussing prognosis, treatment options, and end-of-life care with empathy and understanding.
SOPHIE’s algorithms analyze recorded conversations among patients and oncologists to evaluate doctors’ capabilities in end-of-life conversations. If a physician spends too much time lecturing patients, for example, SOPHIE will flag that as an area in need of improvement. SOPHIE must still undergo randomized controlled testing, but it’s poised to soon reach first-year medical students.
Patients and palliative care
Technology and training take time to bear fruit, but don’t be surprised if your patients put your skills to the test early. After all, advocates and experts are encouraging patients to initiate end-of-life conversations. Ideally, the conversation will be a two-way street. It may be uncomfortable at first to talk candidly about dying. But the sooner everyone embraces the process, the smoother it will go for physicians, patients, and families alike.
In related reading, check out Coming to terms with a patient death on MDLinx.