Palliative care empowers patients with serious illness to take control
Living with a serious illness - like cancer - may be scary and overwhelming, physically and emotionally. There are big questions: Am I going to die? What kind of treatment is available? How will my quality of life change? And there are big decisions: Do I want my doctors to try everything to keep me alive? Do I want to stop treatment when there’s little chance it will lengthen my life? How does a patient sort through all the options?
Palliative care can help.
Pacific Northwest-based insurer Regence BlueCross BlueShield provides a unique kind of palliative care coverage to any member in need. Regence has been leading the region not only in raising awareness about the benefits of palliative care, but in covering a wide range of needs for palliative care patients, their caregivers and families. The company has two teams of dedicated palliative care case managers (one for adults and one for families with seriously ill children). And they offer things most insurers aren’t known for covering, such as spiritual care for patients and direct support for their caregivers - even if that caregiver does not have Regence health insurance. The benefit has been expanded to include palliative care for seriously ill newborns.
Defining palliative care
“Palliative care is comfort care for the duration of the journey, not just at the end,” says Lee Spears, program director for Regence BlueCross BlueShield’s palliative care program.
Palliative care is not hospice care, which is primarily for patients with terminal illnesses who are ready to stop treatment. Instead, she says, palliative care “is part curative, whether curative means that they’re physically making you well or they’re emotionally helping you get ready for the fight that’s ahead. It’s transitional care, in that it moves with you along that spectrum of when things are getting better and getting worse.”
Palliative care specialists can:
- ease symptoms or control pain
- help coordinate your care team
- improve your quality of life
- help you create a plan for end-of-life care
- include your family in caregiving and decision-making
“It’s armor in the fight,” says Spears, “if you need it.”
What does palliative care look like in real life? Consider this: maybe you want doctors to pursue every possible treatment to try to cure you, even if those treatments have serious side effects. Or maybe, says Regence’s Lee Spears, “you may have a strong idea of what you do and don’t want when it comes to pain management, getting a feeding tube, being resuscitated or transitioning to hospice earlier rather than later for comfort care. “These are the kinds of things that are included in an advance care plan,” Spears says. Spears, who oversees palliative care case managers at Regence BlueCross BlueShield’s Personalized Care Support program, says a palliative care plan can ensure healthcare providers honor a patient’s wishes.
Where to find palliative care
Twenty years ago, fewer than a third of hospitals with more than 50 beds had a palliative care program. Today, says Diane Meier, M.D., a geriatrician and palliative care specialist who directs the Center to Advance Palliative Care, patients can access some level of palliative care in a majority of hospitals. But it’s still not enough, says Meier, because not everyone with a serious illness is hospitalized. “Now the challenge is to get palliative care to people where they are: in outpatient settings, dialysis centers, at home or in nursing homes,” says Meier.
Healthcare providers also need more training in palliative care. “Unfortunately, it is still the case that the vast majority of medical students get very little training in the core practices of palliative care, which include pain and symptom management, communication skills, family coordination and coordination of continuity of care,” says Meier.
When you think about what are the highest value, lowest cost medical interventions on the planet, it’s things like clean drinking water and vaccinations. When you think about the lowest value, highest cost, it’s expensive chemotherapy in the last two weeks of life.
That kind of care may cause enormous suffering and may not help prolong or improve someone’s life, says Meier. But people with serious illness can ask their healthcare providers and, increasingly, their health insurers, about other options.
Educating the next generation of providers
“Our goal, as a company, is really simply stated as palliative care everywhere,” says Peggy Maguire, head of the Cambia Health Foundation. “We’re still not reaching enough patients,” she says. “That’s why the company has made a commitment not only to expand member palliative care benefits–encompassing family caregivers, providers, home healthcare workers, social workers, spiritual care and more,” says Maguire, but also to advance palliative care through strategic corporate giving.
A $10 million grant from the Cambia Health Foundation to the University of Washington’s medical school established the Cambia Palliative Care Center of Excellence at University of Washington. “Plus,” Maguire says, “each year we invest in 10 emerging palliative care leaders under our Sojourns’ Scholar Leadership Program with a two-year $180,000 grant to support a scholar’s work on a clinical, research, policy or reimbursement project.” The Foundation also established an endowed chair in pediatric palliative care at Doernbecher Children’s Hospital in Portland, Oregon.
The next frontier in palliative care: Predictive analytics
Training more doctors and nurses in palliative care could help the supply side of the equation, but what about the demand? Are patients asking for palliative care? That’s where the science of predictive analytics comes in. That’s a kind of statistics that involves scouring lots of data to spot trends and make predictions about future events. Regence BlueCross BlueShield’s Chief Medical Officer, Dr. Richard Popiel, says the insurer has partnered with a Boston-based healthcare technology company to use predictive analytics to find patients who might benefit from palliative care as early as possible.
“GNS Healthcare is a ‘big data’ company,” says Popiel. They have developed an algorithm that’s able to identify Regence members whose illness is advancing and who may be interested in palliative care.
“The goal,” says Popiel. “is to make sure patients know their options as soon as possible. “In some of these cases, people may get medication or treatments that can have a serious impact on their quality of life. So the benefit of finding people early, making sure they’re aware of the condition that they have, and the various scenarios that may play out based on that condition and the options they have based on those scenarios, enables them to make better decisions for themselves.”
Empowering patients to make the best decisions for themselves is exactly what palliative care is all about.