Rosemary Grandusky of Webster is used to being in control. She raised three children. She led surgical nursing teams at Genesee and Highland hospitals. She later helped to build a consulting business that brought in $15 million in annual revenue.
But her multiple myeloma, diagnosed in 2007, changed that. This chronic form of blood cancer brought severe bone pain, multiple fractures and debilitating neuropathy. After two stem cell transplants, Grandusky remains on chemotherapy and has struggled with managing her pain.
Pain medications left her feeling so drugged and groggy that she couldn’t drive or focus to do the things she wanted. When she took those medications, her kids would say she’d be in Never-Never Land, and they began to worry that she was depressed.
“I wasn’t myself,” she recalls. “With the drugs, they were in control. I was sleeping all the time. It took the fun out of living.”
As a nurse, Grandusky knew there had to be something better, something that would allow her once again to sew and quilt, to garden and play with her grandchildren.
She turned to UR Medicine’s Palliative Care Program and connected with Cheryl Williams, M.D., who sees patients at Wilmot Cancer Institute’s Pluta Cancer Center, Sands Cancer Center and Interlakes Oncology & Hematology in Geneva.
Together, they found a combination of strategies —including changing the type and timing of medication and using narcotics only when the pain is disabling — that have allowed Grandusky to be herself again.
“I have a regimen I can follow and options I can choose from. This gives me the freedom to do the things I want,” says Grandusky, who recently toured France even though her lower leg was fractured.
The palliative care approach
Sometimes confused with hospice, palliative care focuses on alleviating the pain and symptoms — such as nausea and shortness of breath — that can come with a serious illness like cancer and its treatment. But unlike hospice, it can accompany any and all desired medical treatment of one’s cancer or other conditions. It’s about helping patients and their families to live better while they’re undergoing treatment.
For patients at Wilmot Cancer Institute, palliative care is an option right from diagnosis. Access to these services has now expanded to Wilmot’s outpatient clinics throughout the Rochester and Finger Lakes region. These regional outpatient services are the first of their kind locally, and they complement the palliative services that have been available to patients during stays at UR Medicine’s Strong Memorial Hospital, Highland Hospital and Thompson Hospital. In addition, the outpatient palliative care clinic at Wilmot Cancer Center is expanding this summer to accommodate consultations five days a week.
These outpatient services allow patients to connect with palliative care sooner in their course of treatment.
“Palliative care is an integral part of providing high-quality cancer care,” says Timothy E. Quill, M.D., director of UR Medicine’s Palliative Care Program. “By getting involved earlier with patients, we can provide better care. If patients feel better, they will do better and have better outcomes.”
By addressing pain and other symptoms, palliative care can allow patients to spend less time in the hospital and prevent emergency department visits. It can help them tolerate treatments longer, and an increasing body of research is showing that palliative care is helping people live longer.
Palliative care physicians approach physical symptoms such as pain much like any other physician would, but they have had special training and have special expertise in these areas that can supplement usual treatments offered by non-palliative care specialists and generalist physicians. What also sets palliative care clinicians apart is their focus on the patient’s goals around addressing those symptoms.
“It’s about who you are and what’s important to you foremost,” Williams says. “Just because we have the technology doesn’t mean it will fit your lifestyle and goals.”
Grandusky’s goals, for example, were less pain and a clear mind. She was willing to accept living with some pain in order to continue activities she loves and to spend quality time with her family and friends.
In order to understand a patient’s goals, palliative care providers invest a lot of time listening. They
What is palliative care?
provide a forum where patients and families can discuss how they feel, what worries them and what they want to do next. Very often, palliative care clinicians are as much mediators, facilitators and counselors as they are physicians.
Initial appointments can last an hour, and follow-up appointments can be just as long. The discussions include a wide range of emotional, social, practical and spiritual issues that arise with a cancer diagnosis and treatment.
“We try to see what patients and families are in need of and tailor our conversation accordingly,” Quill says.
Focusing on the whole person
For Bob Walsh of Canandaigua, one of those needs was care coordination. Diagnosed in 2006 with metastatic squamous cell carcinoma of the head and neck, Walsh has undergone significant surgery, radiation and chemotherapy. Since his diagnosis, his care team has grown, and communication had become a real challenge. He was dealing with a lot of pain from his cancer and was getting discouraged. On the advice of his primary care physician, Walsh began to see Quill, who helped coordinate and communicate with the other physicians involved in his care.
“It gets pretty complicated — different doctors, different therapies, everything,” Walsh says. “To have somebody who knows all of that, who sees you as a whole person, is huge.”
Walsh and his wife Nancy, who accompanies him to his appointments, really connected with Quill and appreciate his focus on their quality of life as individuals, as a couple and as a family.
Palliative care helped make some sense out of the storm that cancer brought to Walsh’s life, forcing an early retirement and changing his plans for the future. It has helped the couple deal with grief, fear and frustration, and it has helped restore some of their control over a situation that had taken away so much.
“Palliative care didn’t change the nature of the problem or the chronic nature of the disease, but it gave us hope,” Walsh says.
It also gave the couple a chance to connect and communicate better. At their appointments with Quill, they feel comfortable enough to ask questions and share their concerns, big and small.
“I always feel we’re heard when we’re there,” Nancy says. “I never feel that they’re in a hurry — and sometimes it’s a long appointment.”
They have also both seen how palliative care has translated into the way they relate to each other. They are no longer hesitant to bring up difficult topics such as whether to stop a particular treatment or planning for end-of-life care.
“You go through something like this, and you know it can either pull you apart or bring you closer,” Nancy says. “We’ve really come together through this.”
The couple, who have been together for 45 years, are expecting their first grandchild this summer. They’d like to see the whole-person approach that typifies palliative care incorporated into other aspects of health care, especially with the growing number of baby boomers who are likely to need such services. They’d also like to see more people embrace palliative care as part of their treatment plans.
“It’s not just about medical issues,” Walsh says. “It’s about bringing in good life experiences. It’s leaving room to live your life a little.”