When Alexander Gamble, M.D., was hired to develop a palliative medicine program at Phelps County Regional Medical Center in south-central Missouri, he expected it would take some time to persuade physicians to make referrals.
But on the second day of orientation, Gamble received his first palliative care consult. In 2017, the first year that a full palliative care team was in place, Gamble and his colleagues saw 6 percent of the hospital’s inpatients. And this past January, they consulted on twice as many patients as a year earlier.
“It’s been shocking, even to me,” he says. “It shows that, even in a smaller hospital, this is considered valuable, and having access to this care is critical to the families in our community.”
Palliative care focuses on relieving the symptoms and stress of a serious illness. Of course, all good clinicians practice palliative care by seeking to reduce their patients’ suffering from pain, shortness of breath or the many other symptoms that come with serious illness and associated treatments. But palliative medicine specialists are just that — specialists in identifying, understanding and addressing the most difficult symptoms that patients experience. In doing so, they free other physicians to concentrate on treating the patient’s illness, and they help family members cope with the stress of caregiving.
Because palliative care grew out of the hospice movement, some people still associate it with terminal illness or end-of-life care — and many patients, family caregivers and even clinicians are unaware of what constitutes palliative care today. As the specialty has matured, research has shown that all patients burdened with difficult symptoms, including those who are seeking curative treatment, can benefit from specialty palliative care.
The need for that specialty care is increasing with the aging of America and the growing prevalence of dementia, Parkinson’s disease and other chronic conditions. “We are dealing with individuals whom we have never seen in generations past,” says Maria Torroella Carney, M.D., chief of geriatric and palliative care medicine at Northwell Health, based in Great Neck, N.Y. “People are living longer with multiple comorbidities, with multiple medications that never existed before, with injections, with IV medicines, with technological devices that we’ve never had before.”
Palliative care has become widespread at U.S. hospitals. But the majority of patients living with serious illness do not have access to specialty palliative care for two reasons: Most inpatient programs do not have adequate staffing to serve all patients who could benefit. And outpatient and home-based palliative programs still are uncommon.
Leslie J. Blackhall, M.D., section head for palliative medicine at the University of Virginia School of Medicine in Charlottesville, was a pioneer when she started an outpatient palliative care clinic in the UVA Health System Cancer Center in 2001. “My thinking was that we don’t get upstream enough,” she says.
Seriously ill inpatients who receive palliative care may not have the support they need when they get home. They go to the emergency department for shortness of breath, uncontrolled pain or another intolerable symptom, and may be admitted to the hospital to be stabilized before returning home to start the cycle again.
Blackhall and her colleagues have demonstrated that outpatient palliative care improves patients’ quality of life: They are much less likely to die in the hospital, to have a hospital admission in the last month of life or to die in an intensive care unit; and they are more likely to be admitted to hospice.
Those benefits don’t accrue for patients who only access palliative care when they are in the hospital. “Too often, if we only see them on the inpatient side, we are just being called when they're already in the ICU at the very end of life,” she says.
The UVA Health System outpatient palliative care clinic started with a single provider who worked one-half day per week and has grown to multiple providers five days per week. They treat cancer patients at any stage of illness, including those who have been cured of cancer but suffer peripheral neuropathy or other symptoms related to their therapy. The clinicians also treat patients with end-stage Parkinson’s disease and other neurological disorders, as well as end-stage heart failure, pulmonary fibrosis and other lung conditions, and end-stage renal disease, among other diagnoses.
Despite their benefits, palliative care outpatient clinics are still fairly rare for a few reasons. “The logistics are somewhat complex,” Blackhall says.
Because cancer patients often need palliative care, it makes sense to locate the clinic within a cancer center — but that may not be convenient for the many patients with other diagnoses who need palliative services. Starting an outpatient clinic is more expensive than starting inpatient service because it requires office space and administrative support. And a shortage of board-certified palliative care physicians makes staffing a big challenge. About 325 physicians complete hospice and palliative medicine fellowships each year; researchers say at least 500 per year are needed through 2030 to meet current and future demand.
Moreover, outpatient palliative care requires ongoing financial support from the organization, Blackhall says. Patient visits are generally long — an hour or more is not uncommon — because it takes time to understand and address difficult symptoms.
But as research builds to show that outpatient palliative care saves money, Blackhall believes outpatient clinics will become increasingly common. “It’s just a matter of time,” she says.
Helping patients at home
Northwell Health’s palliative care program is unusual in that it embeds specialty palliative care in and across the continuum of care. Its approach responds to two trends that require new ways of delivering care — a rapidly increasing number of seriously ill geriatric patients and the need to limit hospital use whenever possible.
In addition to heading geriatric and palliative medicine for the health system, Carney was appointed last year as medical director of post-acute services. In that role, she is working to provide well-coordinated care to patients who are treated via inpatient palliative care, subacute rehabilitation, outpatient geriatric medicine, home care and hospice.
In doing so, Northwell Health may be creating a model for palliative care in the future. “We’re just starting now, as a society, to implement some of the right resources for individuals to stay home longer rather than in the hospital,” Carney says. “That’s why a multidisciplinary approach to these individuals is needed.”
Like Blackhall’s program at the UVA Health System, Northwell Health is designated by the Center to Advance Palliative Care as a Palliative Care Leadership Center, which provides training and mentorship to new and growing palliative care programs. Northwell Health’s designation is specifically in recognition of its community-based palliative care services.
“All five of us — our geriatrics office, our hospice partner, our house calls team, our Stern Center for Rehabilitation and our home care agency — are champions for improving the quality of life, focusing on shared decision-making and symptom management for the most complex individuals in the community,” Carney says.
Supporting rural communities
In Rolla, Mo., leaders at Phelps County Regional Medical Center sought to establish a palliative care program to support its cancer center. But in its first year, the program received consultation requests from all of the hospital’s specialty services and completed at least one consult for each admitting provider.
The team includes Gamble, a chaplain, a nurse practitioner and a social worker. The chaplain has worked with hospice patients, but the other team members had no formal palliative care experience. “They are really dedicated to good patient care, so they have taken to the work quickly and worked hard to develop their own palliative care skills,” Gamble says. “They are working with people who are having the most difficult times they can have and helping their burden be a little lighter.”
In addition to the patients his team serves directly, Gamble aspires to help other physicians in the health system become more comfortable talking with patients about their health care goals and options, and managing their symptoms.
“Our little team is never going to be able to see every patient here in the hospital, even though every patient probably could benefit from palliative care,” he says. “So, our idea is that palliative care can become more of the foundational skill set that is being utilized by all the providers in our institution.”
Thinking population health
That share-the-knowledge ethos is common among palliative care specialists, says Kenneth R. White, a certified palliative care nurse practitioner and associate dean, strategic partnerships and innovation, at the UVA School of Nursing, part of the UVA Health System.
UVA Health has a relationship with a small hospital about 40 miles outside Charlottesville; its leaders worried that they could not afford to hire palliative care specialists to serve their patients. “In that case, we're working to educate everyone there to have a baseline knowledge of primary palliative care,” White says. “We can raise their level of understanding best practices in managing serious illness, so palliative care may not be as costly as you think.”
In large health systems, mature palliative care programs are working to design systems of care for specific subsets of seriously ill patients, Blackhall says. For example, clinicians can help devise new care strategies that keep dementia patients from bouncing from nursing home to ED to ICU to nursing home, where the pattern starts to repeat.
“If you look at palliative care from a population health point of view, our goal is to provide clinical care and to train other folks on how to take care of people who have complex and mostly incurable illnesses,” Blackhall says.
Lola Butcher is a contributing writer to Trustee.
Trustee takeaways: How to get started
Palliative care as a medical specialty is not new. But it is not well-understood by the public nor, in some cases, by health care professionals. “We still have doctors who think it's the same thing as hospice,” says Kenneth R. White, a member of the University of Virginia Health System operating board.
White, a certified palliative care nurse practitioner and holder of a doctorate, encourages hospital trustees to learn about the specialty by scheduling an educational presentation at a board meeting or retreat. He says he hopes that, once educated on the subject, trustees will help spread the word in their communities: Palliative care focuses on providing relief from the symptoms and stress of a serious illness and, thus, is appropriate for anyone dealing with such an illness.
“We have to bust some myths about palliative care: It is based on a need, and it’s not based on prognosis,” White says. “People love the idea when they know what it is, but so many people confuse it with hospice and end-of-life care, and they shut down because of our cultural viewpoints on death and dying.”
When patients and family members understand the benefits of palliative care, they are better equipped to ask their care team for help with symptom and stress management — or seek out subspecialty palliative care.
If a health system does not offer subspecialty palliative care, there are many ways to get started without a big investment, says Stephanie B. Gehres, M.D., a member of Presbyterian Healthcare Services’ central New Mexico community board of trustees.
“It’s OK to start small,” says Gehres, a pediatrician with Presbyterian Medical Group. “Whether that looks like a pilot in an outpatient clinic or an inpatient unit, it’s going to be high-value care no matter how you start; and you are going to see the impact.”
One resource she recommends is the Palliative Care Leadership Centers designated by the Center to Advance Palliative Care. The nine centers — including University of Virginia Health System, Presbyterian Healthcare Services and Northwell Health — offer assessments, training and mentorship for organizations that are starting or expanding palliative care programs. — Lola Butcher