Amy Berman of New York City had been living with inflammatory breast cancer for about five years when, during a ride on the Q train one day in 2014, she noticed a pain in her back.
Berman is a registered nurse and, at first, she thought it was a fracture. The cancer had already metastasized to her bones, she knew, making them more susceptible to breakage. But X-rays and testing revealed a different problem. The metastasis had reached the center of her spine, causing pain that would soon get worse.
Berman’s oncologist recommended the standard course of radiation therapy with multiple doses. Although it would likely “turn off” the pain, she learned, it would also cause weeks of severe side effects, including nausea, loss of appetite, skin burning and fatigue.
At that point, Berman consulted a palliative care specialist, which is something relatively few patients in her situation do because they don’t know the option exists, their insurance won’t pay for it or they can’t find a provider.
For Berman, it made a big difference.
Palliative care focuses on the management of pain and symptoms, as well as the quality of life, rather than trying to treat the disease itself. Ideally, palliative care involves a team of doctors, nurses and social workers, all of whom work together and in coordination with the patients and their families.
In this case, the palliative specialist proposed an alternative: a one-time, larger dose of similarly targeted radiation that Canadian doctors had found equally effective, with far fewer side effects. Her oncologist in New York agreed to try it, and the treatment worked even better than expected.
Nausea, fatigue, skin damage ― Berman had none of those problems. “I’m peaches and cream, with blue eyes, so if anybody is going to see a radiation burn, it’s me,” Berman, who is 59, said in a recent interview with HuffPost. “But I had no redness. It wasn’t even pink.”
The very next day, Berman was on the Acela train from her home in New York to Washington, D.C., for a work trip she had planned weeks before.
“I felt great,” she said.
It’s Not Just For ‘End Of Life’
Berman’s experience is a case study in the ability of palliative care to transform the lives of people with serious, life-threatening conditions.
And although many people think of palliative care as synonymous with hospice care, which is for the end of life, Berman’s story shows why it is not simply or even mostly for people whose diseases have run their courses and who face imminent death.
Palliative care is also for people who would still benefit from disease-altering and curative treatments, as well as people living with chronic conditions like Parkinson’s, congestive heart failure or dementia. And it appears to work really well, with clear, well-documented benefits, both for individual patients and for society.
People who get palliative care are more likely to stay productive, whether at work or at home, and they are less likely to end up in the emergency room. That can show up as tangible, quantifiable savings for whoever is paying medical bills: In one 2016 peer-reviewed study, researchers found savings of thousands of dollars a month, producing a positive return on investment of 4.2% to 6.6%.
The knowledge and skills required are (still) not taught in undergraduate and graduate medical and nursing education.
Diane Meier, director of the Center to Advance Palliative Care
Numbers like that help explain why Interest in palliative care has exploded in the last few decades. Today, roughly 75% of U.S. hospitals have a palliative care program. In 2000, less than 25% did. But even that rapid growth isn’t keeping up with the demand, especially with a population that is both getting older and, thanks to more advanced treatments, increasingly living for many years with debilitating or terminal conditions.
Palliative care is more difficult to find outside of hospital settings, even though one of its main goals is to help patients living at home and to keep them away from emergency rooms. It is also less available in certain parts of the country, particularly the south. As many as 40 million Americans live in places with limited or no palliative care options outside of hospitals, according to a 2017 study.
Making palliative care more widely available is among the bigger challenges facing the U.S. health care system today. It requires more commitment from care providers and policymakers, including the ones in Washington.
With New Cures, Medicine Lost Interest In Comfort
“Palliative” comes from the Latin word “palliare,” to cloak. And in some respects, palliative care harks back to medicine’s pre-technological origins, when healers weren’t actually that good at healing. Unable to cure, they had to focus on comfort.
Development of anesthesia, sterile surgical techniques and antibiotics changed all of that, so medicine was able to treat illness and injury more successfully. But in the process, medical professionals started paying less attention to pain management and other quality-of-life issues.
Among the pioneers who pushed back against that trend was a Canadian physician, Balfour Mount. In 1974, he created a “palliative care service” at a Montreal hospital, modeled in part on what he’d seen in hospice care, in order to alleviate the physical and emotional trauma of cancer patients there. The name stuck, and in 1990, the World Health Organization recognized palliative care as a separate medical specialty.
Since then, palliative care has attracted interest and investment from a variety of independent sources, including philanthropies such as The John A. Hartford Foundation, where Berman is a senior program officer. (The foundation focuses on care for older adults; she had been working there even before the cancer diagnosis.)
Employers and private insurers increasingly include palliative care as part of their health benefits, while the U.S. medical establishment now includes organizations like the American Academy of Hospice and Palliative Medicine, which represents doctors, nurses and other professionals who are part of palliative care teams.
But even now, many of the people who would benefit from palliative care don’t get it. One reason is the common misperception that palliative care is only for the end of life, a notion that insurers can reinforce by the way they structure benefits.
Sometimes Patients Face A ‘Terrible Choice’
Medicare is a perfect example. Its hospice benefit will pay for precisely the sort of team-oriented approach that is ideal for palliative care. But to get the benefit, Medicare beneficiaries must first relinquish their right to further disease treatment.
“It is literally an either/or paper you sign,” Diane Meier, director of the Center to Advance Palliative Care, told HuffPost. “It’s like signing your own death certificate, and nobody wants to do that. … My colleagues call it ‘the terrible choice.’”
“Families, parents and clinicians do not like to self-label as dying,” she explained. “The either-or concept keeps people away from the care they need and drives them to the only place that has to take them in a crisis: 911, emergency department, hospital.”
Palliative care is the best friend of the seriously ill.
Amy Berman, senior program officer at The John A. Hartford Foundation
Some private plans already cover coordinated palliative care as a concurrent option for people who are still getting disease treatment. Meier would like that to become the rule, not the exception, for private plans and for Medicare, too ― although the ideal, she said, would be a financing system that moved away from fee-for-service altogether.
If governments and insurers simply paid providers to look after their patients’ health, whatever that took, then the providers could more easily integrate palliative care into their practices.
“Let’s say I’m a heart patient,” Meier explained. “I should be able to get palliative care and consultation and support at the same time I am seeing my cardiologist.”
Today’s Problems Will Get Worse Tomorrow
Another, more basic reason why many people don’t get palliative care is that it’s hard to find providers.
The American Board of Medical Specialties has recognized palliative care as a subspecialty since 2006. To get certification, physicians must go through residency in family medicine, psychiatry or some other form of primary care and then complete a one-year fellowship on palliative care specifically.
Today just 7,000 actively practicing physicians have gone through that training, according to the American Academy of Palliative Care and Hospice Medicine. That is not enough to meet demand right now, to say nothing of the future.
The ratio of palliative care specialists to patients will actually decline for the next 25 years, according to one recent study that appeared in the journal Health Affairs, and it will never come back to the current level unless there are more training slots and more people to fill them.
And it’s not just the lack of physician specialists making palliative care hard to get. A family doctor or, say, an oncology nurse with even a little palliative care training is more likely to be attentive to pain management and family issues ― and to know when consultation with a specialist is necessary. But medical schools, nursing schools and teaching hospitals haven’t done a great job of integrating palliative care into their standard curricula.
“The knowledge and skills required are (still) not taught in undergraduate and graduate medical and nursing education,” Meier said. “Requirements for accreditation for these schools have essentially not changed for decades despite the radical changes in population needs.”
A National Strategy Comes Into Focus
More training slots and more promotion of palliative care by leaders of the medical establishment would help, experts say. So would national standards for palliative care programs, just to make sure they offer a full range of services that patients need, and new payment schemes to support those programs.
Even seemingly small things, like guaranteeing 24-hour access to the palliative care team, can make a big difference. A major reason many patients with debilitating or terminal diseases end up in emergency rooms is that they encounter medication or symptom problems after business hours or on weekends.
To help reach these goals, Meier, Berman and several colleagues in 2017 called for a “National Strategy on Palliative Care.” The model would be the National HIV/AIDS Strategy and the National Alzheimer’s Project Act, which brought together government and private-sector leaders in order to reorganize and improve care for those conditions.
Among the recommendations likely to emerge from such a strategy is getting health insurers to pay for palliative care, directly or indirectly, and training more providers. Both would cost more money in the short run, which is why advocates spend so much time talking up the studies that show the investment can save money in the long run.
This is also why they highlight stories like Berman’s, which show what a difference good palliative care can make. “Palliative care is the best friend of the seriously ill,” she said. “They help me live a great life, even with Stage 4 cancer.”
REAL LIFE. REAL NEWS. REAL VOICES.
Help us tell more of the stories that matter from voices that too often remain unheard.