Jennifer Y. Sheng, MD
Most patients with cancer fear the word “hospice.” It marks the “end of the road” and is to be avoided at all costs. Because of this misconception, which also affects physicians, many patients with cancer use excess hospital care and intensive care services at the end of life. Acute hospitalization accounts for nearly half of Medicare spending for patients with advanced cancer.1
Introduced in the United States more than 40 years ago and added as a Medicare entitlement in 1982, hospice is the model for compassionate care for people in the last 6 months of life.2,3
Providing expert medical care, pain management, and emotional support, the goals for hospice care include promoting comfort and dignity, rather than prolonging life, and providing support for the patient’s family.3
Although more than 1.4 million individuals in the United States received hospice care in 2016, patients with cancer made up only 27% of this group. Patients spend just a median of 19 days in hospice care.4
Physicians will recommend hospice countless times while caring for patients with cancer. As much as patients are alarmed by this topic, we also dread these conversations. Although some of my patients receiving chemotherapy accept palliative care and have heard about hospice multiple times, it is still heartbreaking for both of us when I can no longer recommend therapeutic agents and instead recommend hospice care.
When I started my fellowship, my mentors told me I would become more comfortable with death and dying as I observed experienced providers and worked with my own patients. However, it was not until my second year of fellowship when I got the experience I needed all along: I visited my patient and her family in a hospice facility.
Doctors Don’t Know Much About Hospice
LS was a lovely middle-aged woman with stable pancreatic cancer and on her third line of chemotherapy when she was diagnosed with pneumonia in July 2017. She was treated with antibiotics and supportive measures at her local hospital. I assumed she would beat the infection, but her condition sounded worse every time I talked with her husband.
The antibiotics didn’t work, and she developed a blood stream infection. She became so confused that she could no longer communicate with us. Ultimately, her in-patient team and I recommended hospice. Her husband chose a facility close to their home.
As residents and fellows, we might have some experience with hospice. However, oncology trainees rarely, if ever, visit an off-site hospice facility, even though that is often what we recommend for our terminally ill patients. I had never been to a hospice facility, but I felt compelled to see LS. I was not at peace over her imminent and unexpected death.
It’s OK to Cry
On my Saturday off, I drove 30 minutes to visit LS. As I pulled up to the hospice facility, I was surprised by its homey appearance. Nonetheless, I still expected to walk into a bleak environment full of devastated patients. Inside, LS’s husband rushed toward me. He gave me a hug and whispered, “Dr Jenni, thank you so much for coming.”
He directed me to the communal space and introduced me to several close family members. Each person embraced me, told me that they had heard so much about me, and thanked me for caring for LS.
Sitting around a large table, they told me about their long travels to be there. They shared food and stories about LS. I discovered her quirks and her accomplishments, and I saw how deeply she was loved. As our conversations came to a close, her husband and I separated from them so that I could see LS.
As I walked into her room, I noticed the warm color of the walls. The wood panels were a pleasant contrast to the sometimes-bland hospital. She even had a sliding door leading to a small garden.
Immediately upon seeing LS lying in bed, I felt my eyes well up with tears. I was disappointed with myself and wondered how I could have prevented her current situation. The what-ifs built up quickly, but I never voiced them.
My heart felt heavy knowing that I would never again be greeted with her kind smile or hear her sweet laugh and gentle voice. Although she did not respond to words, her husband placed his head next to hers and said, “Dr Jenni’s here to see you.”
Sitting at her bedside and holding her hand, I told her how much I loved meeting her loved ones and seeing them gathered together. I recounted our year-long treatment journey and told her how blessed I was to know and care for her. I gave her one last hug.
Outside the room, her husband squeezed me a bear hug and thanked me again. As he started crying, the tears that I had held back rolled down my face. After some silence, I wanted to address our unspoken guilt and emptiness.
“I’m glad we
chose hospice care for her and gave her the opportunity for family to come together in a beautiful and peaceful place to honor her life,” I said.
She died 2 days later.
I shared this experience with my co-fellows, as it enriched my understanding of hospice and reshaped my conceptions of end-of-life care. For all my subsequent patients, my experience helped me better address their anxieties and uncertainties. Knowing what hospice is, is one thing; experiencing it is another.
I do not know many doctors have visited their own patients in hospice, but I’m grateful I was able to have this experience early in my career—the countless patients I’ll care for in the future will benefit. Oncologists develop an intimate trust with our patients that is forged through countless clinic visits over months or years. We owe it to them to be as informed as possible about each option we recommend. I am thankful to LS for teaching me to celebrate little victories, cope when our treatments fail, fill a life with loved ones, and die in peace.
- Brooks GA, Li L, Uno H, Hassett MJ, Landon BE, Schrag D. Acute hospital care is the chief driver of regional spending variation in Medicare patients with advanced cancer. Health Aff (Millwood). 2014;33(10):1793-1800. doi: 10.1377/ hlthaff.2014.0280.
- National Hospice and Palliative Care Association. History of hospice care. nhpco. org/history-hospice-care. Updated March 28, 2016. Accessed May 10, 2019.
- Torpy JM, Burke A, Golub RM. Hospice care. JAMA. 2012;308(2):200. doi: 10.1001/ jama.2012.6210.
- National Hospice and Palliative Care Organization. NHPCO’s facts and figures: hospice care in America [press release]. Alexandria, VA: National Hospice and Palliative Care Organization; April 2018. https://www.nhpco.org/hospice-statisticsresearch- press-room/facts-hospice-and-palliative-care. Accessed August 29, 2018.