Stories about palliative care and the end of life are universal — and sorely needed

In her book “That Good Night: Life and Medicine in the Eleventh Hour,” Dr. Sunita Puri uses vivid, intimate stories as a way to spur discussions on difficult subjects: death and the suffering that too often precedes it.

“I wanted to write the book I wish I could have read as a trainee in medicine, and as someone with aging parents,” said Puri, the medical director for palliative care at the Keck Medical Center and Norris Cancer Center of USC.

In a Center for Health Journalism Health Matters webinar this week, Puri called on journalists to do more to help people understand the complex decisions they’ll face near the end by telling more end-of-life stories. Journalist and author Fran Smith, who wrote about hospice care and the end of life in “Changing the Way We Die,” joined Puri to discuss the emerging field of palliative care, the resistance and challenges she’s encountered from the rest of the health system, and advice for journalists who want to tell these important human stories.

Know your terms

Before delving into the field, it’s important to know the right terms and the definitions. 

Palliative care refers to a special kind of medical care provided to patients facing a serious illness. It seeks to address the physical, emotional and spiritual aspects of suffering — and can occur at any age or stage of a disease and throughout treatment, Puri said. The team-based approach often involves a physician, nurse practitioner, social worker and chaplain.

While palliative care is most often used at the end of a patient’s life, it can also be used at any point during their care journey — something that’s often misunderstood and seen as a sign of giving up.

The term “hospice” generally refers to a type of palliative care provided during the last six months of life, when treatment is focused less on therapies and more on creating the best quality of life for the patient’s remaining time.

End-of-life care, which is also a type of palliative care, refers to symptom relief and emotional support in the last days and hours of life.

Softening resistance to hard conversations

Smith asked Puri how she handles reluctance from patients and their families to conversations about how they want to die, something she detailed through personal anecdotes in her book.

Puri uses an approach she calls the “softening of resistance” in patients reluctant to consider palliative care or conversations about their own death.

Still, it’s not always successful. Just as a surgeon can’t fix every patient, she’s learned she won’t be able to connect with everyone. When that happens, she still tries to accompany them on their journey by continuing to show up and offer resources.

Puri has also experienced resistance from medical colleagues, who might not initially see the value of palliative care.

She asks colleagues to join palliative care team meetings so that they can see firsthand what happens – and understand that the objective is not to put everyone on hospice. That collaboration is important for patients, who can then see palliative care as part of a broader approach to their care.

Race and class shape dying, too

Nothing in Puri’s training prepared her for taking care of patients in South Los Angeles, where she experienced firsthand how socioeconomic disparities shape end-of-life care.

As Puri put it, her team’s services were often not enough to “erase all the inequities in life that become inequities in dying.” For many patients, the proverbial “good death” in one’s own home, surrounded by loved ones, wasn’t a realistic option. Sometimes, the home was in a dangerous neighborhood, where nearby pharmacracies don’t dispense opioid painkillers and break-ins are frequent.

"We like to focus on the medical miracles. Those exceptions to the rule are good to know about, but I often find myself in the position of telling why a story in the news doesn't apply to a patient's situation."

In some cultures, dying at home means families believe they would have to live with a ghost, an idea that makes many deeply uncomfortable. Puri also learned that some end-of-life concepts don’t translate easily into other languages.

In her reporting, Smith also encountered the struggle of people who can’t afford the range of care services often required to die at home, she said.

Rethinking what we cover

Patients’ view of palliative care is often shaped by the media: what they hear or read in the news, or see on medical dramas on television, Puri said.

She suggested reporters follow patients from diagnosis to death, describing along the way the decisions someone might face at every stage. Journalists would do well to focus their coverage less on “medical miracles” and more on the realities most patients face at the end of life.

"We like to focus on the medical miracles. Those exceptions to the rule are good to know about, but I often find myself in the position of telling why a story in the news doesn't apply to a patient's situation," Puri said.

She emphasized the humility that comes from sitting in silence and listening to someone’s story, asking them about their life and how it has been changed by this disease. 

For reporters, proceeding with sensitivity is crucial. Puri suggested asking the patient if there are certain topics that are off limits. Ask them how they would describe the state of their health now, an important insight into their mindset. Sometimes asking permission to use scary words can be helpful: “Would it be OK if I used the word ‘dying’ with you?”

In her own reporting, Smith said she was blown away by how open hospice patients were, allowing her to walk into their homes and hear their stories.  The experience forever changed her.

“There was a lot of sadness, but also a lot of human power,” she said. “It was not a depressing experience at all.”

Ultimately, writing about death is the story of life and living, Puri said. The dying are still with us, and it’s empowering to say to them: “I see you. You still have a story. You still have a life. I’d like to learn about it.” 

Watch the full presentation here: