When a serious illness is diagnosed, palliative care should be part of the treatment

Abigail Mayer was 26 years old and married for just six months when she got the diagnosis: neuroendocrine carcinoma.

Stage 4.

The prognosis was bleak, says her father, Christopher Rhoden.

That was February 2017. Abi and her husband, John Mayer, sold their condo and moved in with her parents. Her father took a leave of absence from his job to care for her. And Abi fought hard — chemotherapy, surgery, prayers.

“But I wish we had known about palliative care from the beginning,” Mr. Rhoden says. “Abi endured a lot of unnecessary pain.”

It was a year and a half after the diagnosis when they sought it out. “I had no idea what it was,” he says. “At first, we thought it was the same as hospice, and we knew Abi wasn’t ready to give up.”

That’s a common misconception, says Marissa Galicia-Castillo, MD (MD ’97, Internal Medicine Residency ’00), the Sue Faulkner Scribner Distinguished Professor in Geriatrics, Professor of Internal Medicine and Chief of Palliative Medicine at EVMS.

Palliative medicine is all about the patient’s quality of life. What’s important to you? What are your goals? Then it’s getting all the silos together to help the patient achieve those goals.”

Marissa Galicia-Castillo, MD
(MD ’97, Internal Medicine Residency ’00)

Palliative care, she explains, is a team-based approach to relieving the symptoms and stress of a serious illness. Unlike hospice care, it accompanies the illness’ curative treatments. A palliative-medicine specialist leads the team, which can include other physicians, nurses, social workers and chaplains. As a subspecialty it’s fairly new, approved in 2006 by the American Board of Medical Specialties.

But to Dr. Galicia-Castillo, “It’s simply old-fashioned medicine. Today, medical care can be so specialized that sometimes no one is addressing the person as a whole.

“Palliative medicine is all about the patient’s quality of life,” Dr. Galicia-Castillo says. “What’s important to you? What are your goals? Then it’s getting all the silos together to help the patient achieve those goals.”

Dr. Galicia-Castillo asked those questions when she first met with Abi Mayer.

That stood out to Mr. Rhoden. “We met with a palliative-care specialist on Tuesday,” he wrote in the blog he and Abi launched after her diagnosis. “She was pretty terrific and spent a good deal of time just listening to our girl, hearing what Abi had to tell her.”

Christopher and Marcia Rhoden’s late daughter, Abigail Mayer, received palliative care from an EVMS specialist while she was treated for neuroendocrine carcinoma. “My deepest regret is that Dr. Galicia-Castillo didn’t enter our lives sooner,” Marcia Rhoden says.

Dr. Galicia-Castillo learned that Abi had been reluctant to take her pain medications, fearing addiction and the feeling of being high and disconnected from the world. So she worked with Abi on a pain-management plan.

“Her pain was much better after that,” Mr. Rhoden says.

Abi never did go into hospice care, choosing to fight until she succumbed to her cancer last December.

“The oncologists extended her life,” Mr. Rhoden says, “but Dr. Galicia-Castillo made that extra life as good as it could possibly be.”

“What makes life meaningful enough to go on living?”

Paul Kalanithi, MD, from the book When Breath Becomes Air

Thomas Smith, MD, is Director of Palliative Medicine for Johns Hopkins Medicine, as well as the Harry J. Duffey Family Professor of Palliative Care and Professor of Oncology for the Johns Hopkins University School of Medicine.

A nationally known expert in palliative care, he was the guest speaker at a recent EVMS MedEd Talk on palliative medicine.

He’s also a tattoo artist — of sorts. “Every health professional should have primary palliative-care skills,” Dr. Smith says. As a reminder, he and his team created a temporary tattoo with these questions that he believes should be asked of every patient:

How do you like to get medical information?
What is your understanding of your situation?
What is important to you?
What are you hoping for?
Have you thought about a time when you could be sicker — living will or advance directive?

“Then do the hardest thing in medicine,” Dr. Smith says. “Be quiet and listen.”

As for palliative medicine specialists, he explains that their first job is to find out who their patients are and how they fit into the world. So another question he suggests they ask: What gives you joy?

By reducing stress and pain, palliative care can help the patient medically. “The data are reasonably clear in oncology, where it’s been studied the most,” Dr. Smith says. “Symptoms are better controlled, quality of life is better and there’s less anxiety and depression.”

Bruce Waldholtz, MD, is living proof. A gastroenterologist, Dr. Waldholtz is Assistant Professor of Clinical Internal Medicine at EVMS, a member of the EVMS Board of Visitors — and a 19-year cancer survivor.

“Battling cancer helped me become a better doctor,” he says. And the palliative care he received back then sparked his interest in the field.

Today, as a board member of the American Cancer Society Cancer Action Network, Dr. Waldholtz advocates for the Palliative Care and Hospice Education Training Act. This federal legislation would fund an increase in the number of palliative-care faculty at schools of medicine, health professions and nursing around the nation.

At Johns Hopkins Medicine, this temporary tattoo reminds medical professionals to ask every patient five quality-of-life questions. Temporary tattoo courtesy of Johns Hopkins Medicine, Department of Palliative Medicine

Until Congress takes action, though, he and his wife, Baila Waldholtz, have taken up the cause. Last year, they made a gift to the new Brock Hospice and Palliative Medicine Fellowship at EVMS, established by philanthropists Joan Brock and her husband, the late Macon Brock.

“It became clear what was needed was a training program,” Dr. Waldholtz says. “If you train one person, you’re affecting literally thousands of people.”

That one person at EVMS is now Jerry McQuain, DO, who was chosen for the fellowship and will begin training in July. A hospitalist with Sentara Healthcare, Dr. McQuain is also an Assistant Professor of Internal Medicine at EVMS. But well before that, he was a physical therapist.

“Back then,” Dr. McQuain says, “I knew I wanted to do more to help people. That’s why I went to medical school. But I’ve realized that I want to treat people, not diseases. That seems to line up best with hospice and palliative medicine.”

While the trend now is for all health professionals to be trained in primary palliative-care skills, a fellowship-trained specialist learns to manage complicated symptoms that require advanced knowledge, assist with difficult decisions about treatment and pain management, and even help mediate conflict within families.

Palliative care needs to be part of a patient’s treatment plan from the time of any diagnosis that may limit quality of life, Dr. McQuain says. “It can benefit patients of all ages and has been shown to increase quality and duration of life.”

“When care is our first concern, cure can be received as a gift.”

Henri Nouwen, Priest and Author

In 2016, when EVMS launched the new CareForward curriculum, medical students began learning about palliative medicine in their first year.

“EVMS has been open to including these concepts for our learners and doing it in innovative ways,” says Lauren Mazzurco, DO, Assistant Professor of Internal Medicine and a hospice and palliative medicine specialist.

Dr. Mazzurco helps lead the MD curriculum’s four-year approach to palliative medicine, which she calls true patient-centered care.

“We’re all learning to reframe what success looks like in terms of caring for patients,” she says. “We’re training doctors and other health professionals to think about what we can do for patients, rather than what we can do to patients.”

This is especially important as the nation’s population ages, she says. “More people are living with multiple chronic illnesses and have complex healthcare situations. As they age, they start to go in and out of the hospital more often. We need to ask them questions like where they want to spend their time and whether the hospital is improving their health.”

The national Center to Advance Palliative Care reports that about six million people in the U.S. have a need for palliative care, but most aren’t receiving it. The World Health Organization says 39 percent of the people who need this care have cardiovascular diseases, 34 percent have cancer, 10 percent have chronic lung diseases, 6 percent have HIV/AIDS and 5 percent have diabetes.

The main barrier to access is a shortage of providers. According to the Center to Advance Palliative Care, the nation’s 120 accredited palliative-care fellowship programs graduate fewer than 330 specialists per year.

Another barrier is that palliative care is still confused with hospice care — sometimes even by medical professionals. One patient remembers a family physician telling her, “You don’t need that. You’re not dying.”

Still, Dr. Marissa Galicia-Castillo encourages any patient with a serious or chronic illness to ask about palliative-care options.

Reiterating that message, Dr. Bruce Waldholtz recites his mantra: “We will cure sometimes. We will comfort often. But we will care always.”

We will cure sometimes. We will comfort often. But we will care always.”

Bruce Waldholtz, MD

What’s the difference?

Along with her roles at EVMS, Dr. Marissa Galicia-Castillo runs the half-day Palliative Medicine Clinic at Sentara Norfolk General Hospital, which operates every Tuesday afternoon.

“There’s so much confusion between palliative and hospice care,” she says, “that we’re changing the clinic’s name to the Supportive Care Clinic.”

Here’s how palliative care and hospice care are similar and different.

Palliative Care

Hospice Care

Focuses on the pain, symptoms and stress of any serious illness that limits a person’s quality of life.

Focuses on the pain, symptoms and stress of a serious illness for people who likely have six months or less to live.

Appropriate at any age and at any stage in a serious illness and provided along with curative treatments.

Usually provided at end of life after curative treatments have ceased.

Usually covered by health insurance, Medicare and Medicaid.

Can be provided in the home, hospital, clinic, skilled nursing facility, long-term care facility, long-term acute-care facility, assisted living facility, group home.

Can be provided in the home, hospital, hospice facility, skilled nursing facility, long-term care facility, assisted living facility, group home.

Sources: National Hospice and Palliative Care Organization; Center to Advance Palliative Care

Join the Brock and Waldholtz families in funding hospice and palliative medicine fellowships at EVMS.

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