Announced in 1978 by then President Jimmy Carter, the month was established to recognize the efforts of those who provide end-of-life care, and to help raise awareness of the growing hospice movement. By the time of this designation, Connecticut Hospice, America’s first, had already been providing high-quality care to hospice patients for 5 years.
We have come a long way since 1978. President Carter is now a hospice patient. Hospice is well-established in the United States and around the world; 1.7 million American Medicare beneficiaries will avail themselves of hospice care in 2023.
Ironically, despite this progress, most people do not know the difference between hospice and palliative care. So, in honor of National Hospice and Palliative Care Month, this blog will be a primer on two very distinct medical specialties.
Hospice is a benefit -- an entitlement, like Social Security, provided by Uncle Sam -- available to people whom a physician estimates to have six months or less to live if their illness progresses through its natural course and who have declined further treatment in favor of focusing on the quality of the life they have remaining. Most hospice programs are financed by Medicare – at no cost to patients -- though many other insurers, including Medicaid, offer hospice benefits. All hospices must provide a specific set of services to the patients they enroll, including skilled nursing and medical services, social work, chaplaincy, volunteer, and other professional services.
While both hospice and palliative care are part of the same medical specialty, complete with post-residency fellowships and, since 2006, board certification, palliative care is distinct from hospice. Appropriate for all people with serious illness, including those still seeking treatment of their disease -- an important distinction from hospice -- palliative care helps patients and their loved ones understand the condition, treatment options, and likely disease trajectory so they may make informed choices that align with their goals and wishes. It also provides expert management of symptoms such as pain, shortness of breath, and nausea, helps people obtain non-medical assistance like help in the home, and may even provide medical management of the disease and its complications.
I had the privilege of providing palliative care to two patients who exemplify the specialty at its best. One, a woman in her fifties, was diagnosed with a malignancy and referred to a home palliative care program I worked with. She was suffering from pain and anxiety, and the nurses, social workers and I collaborated to provide her relief from these symptoms with counseling, support, and medications. Literate, educated, and a self-starter, she then set about finding a leading physician to offer treatment for her disease.
When she returned from her first appointment she was confused.
“What did he say?” I asked during a home visit.
“I didn't understand a word of it,” she told me, exasperated. “I’m not even sure he was speaking English.”
This was not at all uncommon. Though well-intended, doctors often struggle to make medical information understandable for their patients, who typically do not have medical training. Palliative care doctors specialize in exactly this kind of conversation.
“Would you like me to call him and find out what he can do for you and let you know?” I asked.
She did. I returned to her home a few days later and got straight to the point, cutting through the medical esoterica that had characterized my discussion with the surgeon -- and, apparently, what he had told her. “The surgeon said you have a better than 80% chance of being cured with an operation,” I told her.
“Would you do it?” she asked.
“Those are pretty good odds,” I said. “I'd go for it.”
That was more than five years ago. I still get Christmas cards from her. Cured, she returned to her life and no longer needs palliative care.
The second was a man in his late 60s. Retired, he had recently lost his beloved wife, and suffered from advanced cancer that left him fatigued and mostly unable to get up from the couch in his living room. He'd been suffering from cancer for 10 years; his oncologist had managed again and again to find a treatment to prolong his life.
He had thought about his condition and was direct about his wishes. “So long as my doctor can keep my cancer in check,” he said, “I'm going to keep getting treated. But when it stops working, I'm going to enroll in hospice so I can die in comfort.”
I was impressed. “What do you like to do?” I asked. “For fun?”
“Fish,” he said without hesitation. “Trout. Catch and release. I even have a blog. But I'm too tired for that now,” he said with a resigned frown. “I can barely get off this couch.”
I had some tricks up my sleeve. I started him on a brief course of high dose corticosteroids and amphetamine. He virtually leapt from his couch, donned his floppy fishing hat and khaki vest, festooned with flies he had tied himself, climbed into his pickup truck, picked up his son, and spent a day catching trout and throwing them back into one of his favorite fishing spots.
I stopped the medications and he flopped back on his couch. Six months later he was admitted to our inpatient hospice facility. Treatment was no longer holding back his cancer and he had worsening shortness of breath.
I stopped in at his bedside on the morning of his admission. “How can we help?” I asked.
He answered with his characteristic lack of hesitation. “I want to stop feeling short of breath, I want to see my son get married, and I want to die in peace,” he replied.
His son stood on the opposite side of the bed. “When are you getting married?” I asked him.
“In three months,” he replied.
Later, we spoke in the hall. “You're getting married tomorrow at your dad's bedside,” I said.
“I think you misunderstood doc,” he said. “I'm getting married in three months.”
“I understood,” I said, “but I'm asking you to get married tomorrow at your dad's bedside.”
He and his fiancé married the following day in a ceremony attended by most of the hospice staff. He wore a tuxedo and she a wedding gown. There was music, dancing and champagne – right in his father’s room. His father could not stop smiling. He died peacefully the following day.
Connecticut Hospice is proud to launch a palliative care program, which will be fully operational in December. Our APRN, social workers, and chaplaincy will be offering palliative care to patients who are self-referred, or referred by friends, family, or by their doctors. We will see patients in a brand-new clinic in our inpatient facility in Branford, by telehealth, and in people's homes or in skilled nursing, assisted living, or independent living facilities.
For more information about our new palliative care program, call 203-315-7540.
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