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Palliative care attempts to ease heavy burden

Palliative care helps Rosemary Grandusky pursue an active life full of grandchildren, gardening and travel to faraway places while she fights cancer.

“It gave me back my life,” says Grandusky, 66. “It really did.”

Grandusky was diagnosed with multiple myeloma at the age of 57. The disease, which forms in white blood cells, can produce a multitude of symptoms, including loss of appetite, shortness of breath, confusion and pain.

“Multiple myeloma causes significant bone pain and lesions within your bones,” says Grandusky, who is an outpatient at URMC’s Pluta Cancer Center.

Over the years, Grandusky has undergone a variety of treatments, including two stem cell treatments, and spent a number of periods as a hospital inpatient. Due to the weakness of her bones, they can—and have—fractured without warning. Back in 2010, Grandusky found that her pain medications were interfering with her life to a degree she could not accept.

“I wanted to have a clear head, play with my grandchildren, do my gardening and sewing, things like that,” she explains. “I just couldn’t do that—I was in a zombie state, sometimes, because the drugs had that kind of affect on me.”

Grandusky’s palliative care team changed her medication list and schedule.

“They’ve adjusted and changed my pain medication, and that has worked wonders,” she explains. “I do have pain, and I’m willing to accept that certain level of pain, because I want to be able to do the things I want to do.”

Serious illnesses often present a host of symptoms, any of which can seriously affect a patient physically, emotionally and mentally. Cancer is commonly marked by nausea, vomiting, shortness

of breath and fatigue, among other physical symptoms. In addition, the treatment of the disease often punishes the body—chemotherapy can lead to hair loss, mouth sores, diarrhea, nausea and other side effects. A patient might have to endure such physical insults repeatedly for years.

“A patient with breast cancer who has lots of treatments available that are highly effective is probably going to be living with that disease for a very long time,” says Timothy Quill M.D., director of the University of Rochester Medical Center’s Palliative Care Program.

In addition, patients might grow depressed, anxious or suffer other emotional problems because of what they have to endure, or its effect on those who are close to them.

“Patients are a lot of times more concerned about their families than they are about themselves,” says Kimberly Stampone, a social worker with Rochester General Hospital’s division of palliative care. “How will this affect my children? How will this affect my spouse?”

Altogether, cancer—whatever form it takes—poses a heavy burden for someone who already has much to shoulder.

“Whether it’s a new diagnosis, or someone who’s been struggling with a chronic or serious illness for some time, it’s very common for patients to feel overwhelmed,” Stampone says. 

Palliative care seeks to reduce that burden.“The goal of palliative care is to pre-vent and relieve suffering, and also to support the best quality of life, not only for the patients but the families,” says Kathy McMahon, president and CEO of the Hospice and Palliative Care Association of New York State.

In most cases, those in palliative care are being treated for cancer or another serious illness.

“There’s nothing about palliative care which says you can’t have the most aggressive, restorative care,” Quill says. “The majority of patients we see are still involved in very active treatment.”

Palliative care teams generally include physicians, nurse practitioners, social workers, chaplains and other professionals and caregivers. They take a multipronged approach that starts with symptom management.

“We use medicines all the time to help manage symptoms, whether it’s pain or shortness of breath, constipation, nausea, depression,” says Adam Herman M.D., the director of RGH’s palliative care division.

At the same time, the teams help their patients make important decisions about the courses of their treatment. That becomes particularly important if the progression of the disease warrants a switch to a new drug or treatment regimen.

“There’s all kinds of tradeoffs in medical treatment,” Quill explains. “They might want to know what the odds are of treatment working—they might want to know what ‘working’ means.”

Experts in palliative care also try to help their patients deal with the emotional effects of the disease and its treatment. Stampone and the others in her group try to help them throw off the feeling of being overwhelmed and re-acquire a sense of personal control.

“A lot of the time, what we’re doing is helping re-frame what hope, what control is,” she says. “We can’t always control what the cancer’s doing, we can’t control time, but we can control how and maybe where you spend that time.”

They also help patients and their families communicate more effectively regarding the cancer, its treatment and their concerns about both.

“It’s often very difficult for patients to speak honestly about what they’re feeling with their families,” Stampone says. “I feel a lot of my work is as a mediator or coordinator of care—helping patients and families talk to one another about what they’re afraid of.”

If more serious mental health issues emerge—say, the patient or a family member develops clinical depression—Stampone refers those afflicted to a psychologist, social worker, family therapist or other professional for more intensive therapy.

Even the slowest moving cancers can eventually overcome all efforts at treatment, or a patient’s willingness to accept it. At such times, a palliative care team will refer the patient to a local hospice, a facility where patients in the last six months of life can spend their days in comfort. Hospice residents have decided to refuse further life-sustaining treatment, though they might continue to accept a form of palliative care.

“As a palliative care physician, I continue to see my patients if they go into hospice,” Herman says.

As for Grandusky, she continues to receive chemotherapy.

“I get treatment every week because I have gone through all the drugs that would put me to any level of remission,” she says. “I take a handful of stuff every day.”

Despite that, she was able to visit France last March with her husband. Though she had to wear a special boot—due to another spontaneous fracture—the couple enjoyed the trip. Grandusky intends to continue enjoying her life.

“The average life expectancy of this disease is about seven years—I’ve already beat that,” she says. “I feel like I’m doing as well as expected, but better.”

Mike Costanza is a Rochester-area freelance writer.

6/19/15 (c) 2015 Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email rbj@rbj.net.

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