Palliative care helps you live better with a serious illness

Imagine you or someone you love is diagnosed with a serious illness. Cancer, perhaps, or heart failure.

Along with the physical toll, you might feel overwhelmed by the appointments, treatment details and rapid-fire decisions you’re asked to make.

Now imagine that from day one, you had a specialized team to support you — mentally, physically, and even spiritually if you needed it.

That’s the role of palliative care. This specialty has been around for 20 years, but it’s often misunderstood and underused.

How does palliative care work?

In essence, “palliative care empowers patients to make informed decisions about their care based on their goals and values,” says Darcie Teats, RN, senior clinical transformation advisor for serious illness and palliative care at Regence.

This type of care goes alongside the treatments you get for a specific illness. Palliative care providers help you and your family live better with the illness, says Teats, a nurse with nearly 30 years’ experience. Their goal is to improve the quality of life for you and your loved ones.

Palliative care teams include doctors, nurses, counselors, chaplains and social workers. Depending on your needs, the team works together with your regular doctors to make sure your wishes are met. And you can start as soon as you’re diagnosed.

Palliative care can help you:

• Manage your pain and symptoms so you can be as functional as possible.
• Choose treatments that line up with what is most important to you.
• See providers by phone/video or home visits so you can avoid going to the hospital.
• Ensure your doctors in different specialties talk to each other.
• Cope with the stress of a serious illness.

In fact, research shows that early adoption of palliative care makes a big difference for people with cancer and other serious illnesses. Its benefits include less depression, improved coping, better communication about your options for care, less time in the hospital and living longer even with your illness.

Palliative care advocates also say it’s important to help people understand the difference between their specialty and hospice care. While palliative care is integrated with treatment at any stage of an illness, hospice is specifically for the end of life. This type of team-based care is most often delivered at home and coordinated with the patient’s regular doctor.

Bringing palliative care into the conversation

Many health plans cover palliative care, and most hospitals and health systems have it. But patients and families can sometimes be reluctant to take advantage of its services, and few ask for it by name. “The key is to focus on the patient's needs and benefits, rather than the palliative care label itself,” says Tony Back, MD.

Back is a professor of medicine at the University of Washington, founding co-director of the university’s Cambia Palliative Care Center of Excellence, an expert in patient-centered health care communication strategies, and one of the creators of the Serious Illness Messaging Toolkit.

As an example, he says, instead of asking if a patient would like palliative care, a provider might say, “it sounds like you're having a lot of symptoms. Let me refer you to someone who can help control those.”

Teats’ team at Regence also has found several ways to introduce palliative care to the members and providers in its network.

For patients, this includes a group of nurses who serve as care managers. They connect members to palliative care services and work with them on advance care planning to define and outline their future wishes for medical care.

The health plan’s customer service staff also are trained to explain palliative care and care management services when they talk to patients with serious illnesses.

On the provider side, Regence offers lots of education about the benefits of palliative care. This could include connecting a doctor with local resources, or sponsoring a clinician’s training through professional groups like the Center to Advance Palliative Care (CAPC).

“We’ve focused on creating relationships with people in the community,” Teats says. “Once they have that education, they feel more comfortable having the palliative care conversation or the advance care planning conversation.”

As part of this relationship-building, Regence discovered that palliative care wasn’t available everywhere its members live — especially in rural communities.

About two years ago, Regence found an innovative way to serve these communities by partnering with a virtual health company, Vynca, that offers advance care planning and palliative care.

“They bring a wraparound, interdisciplinary team approach to supporting people,” Teats says. “It’s all done at home, or wherever a person calls home, and they made the technology super easy.”

Members access the online platform via a smartphone, computer or tablet. Its providers are available 24/7, and they coordinate with a patient’s local providers to make sure everyone is on the same page about their treatment.

Investments in access and awareness

In many ways, palliative care represents the ideal of whole-person, patient-centered health care, says Peggy Maguire, president of Cambia Health Foundation.

As leader of the corporate foundation of Regence health plans, in the last decade Maguire has shepherded about $65 million toward palliative care access, awareness and quality programs. One of the most impactful of these investments is the Sojourns Scholar Leadership Program. Since 2014, the Foundation has invested almost $20 million in the leadership program to develop 108 emerging palliative care leaders. Its investments support the scholars’ innovative projects to improve care for people with serious illnesses.

Maguire says a formal program evaluation is in the works, but early reports from participants demonstrate its impact:

• 90% of scholars have published articles in scientific journals.
• 77% have earned leadership awards.
• 69% have been promoted at work.
• The scholars have collectively built on Cambia’s investment to raise another $418 million to help the field grow.

The scholars program is open to all members of a palliative care team, because "leadership can come from anywhere, depending on the needs of the patient," Maguire says. For some people, a social worker or chaplain might be better suited to lead a care plan than a doctor or nurse, for example. “The interprofessional approach allows the team to address all aspects of the patient's journey.”

Other Foundation initiatives include grants for home, community-based and hospital-based palliative care units, as well as seed funding for telehealth programs and consumer awareness campaigns like CAPC’s "Get Palliative Care" and the Netflix documentary "End Game."

The Foundation also was the initial funder of The Conversation Project and co-funded the Serious Illness Messaging Toolkit. Going forward, the Foundation plans to sustain the scholars’ network and to continue leaning into endowments it established at academic institutions in Washington, Oregon and California to support innovation in palliative care education, research and clinical practice.

The goal is for every person who could benefit from palliative care to know what it is, how to ask for it, and to get it from a skilled team in the setting that is right for them.

“By growing the field of palliative care, we also hope to influence broader transformation,” Maguire says. “The aim is to create a health care system that is more person-focused, compassionate, and healing in the broadest sense of the word, not just in fighting disease.”

Compassion at its core

When asked why they’re passionate about palliative care, Back, Teats and Maguire all turn to personal examples of serious illness and the stress that came with it — and they say that this is a common motivator for people in the field.

Back’s father was diagnosed with cancer when he was in high school, prompting him to specialize in oncology and later palliative care.  

At 17, Teats cared for her ailing grandmother. Helping her relative cope with a serious illness sparked her interest in a nursing career, and later drew her to palliative care.

Maguire calls her own story “a tale of two fathers.” She lost her dad to lung cancer when he was just 48. While she was a first-year law student, she and her family thought they were doing the right thing by getting him aggressive treatment, no matter the toll.

“I haven’t talked about this in a long time, and it’s still hard,” she says. “Seemingly overnight he went from being this vibrant light in my life to someone who was devastatingly ill, not only because of cancer but because of the treatment protocol. It sent shock waves through our whole family.”

This was before palliative care was common. In the end, it was a “medical death,” without closure — and with a lot of pain and stress.

In comparison, when Maguire’s father-in-law was 90, his health was on the decline from several conditions. When his doctor found fluid in his lungs, Maguire immediately suggested they get palliative care involved.

The care team openly discussed her father-in-law’s goals. They partnered with the family to address his wishes and concerns about his illness, making sure he was comfortable at each stage of care.

He was able to spend his later years surrounded by family and reassured that when his time came, his needs would be met. When he passed away, he was at home with loved ones, listening to his favorite music.

This more peaceful experience underscored what a difference palliative care can make, Maguire says. “It’s not about dying. It's about living as well as possible, as long as possible.”

Find more details about palliative care support services at regence.com.

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