A cancer diagnosis can be overwhelming. In New York State each year, more than 100,000 people are diagnosed with cancer. The burden of such a serious illness like cancer is not only a fight for your life, but also a struggle to manage symptoms like pain, shortness of breath, nausea, and anxiety—not to mention the impact on families, friends, and loved ones.
“Cancer affects not just a patient, but spouses, family members, brothers, sisters, and children,” said Adam Herman, MD, Director of Palliative Care Services for Rochester General Hospital. It’s one of the reasons why Dr. Herman and his colleague Dr. Jeffrey Allen, Director of Palliative Medicine at Unity Hospital, have developed the new Rochester Regional Health Outpatient Palliative Care Program.
“The goal of the program is to maximize quality of life in the face of serious illness by employing aggressive medical management of difficult symptoms and helping patients and their families live well,” Dr. Herman said.
Palliative care is specialized medical care for people living with a serious illness. It is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both patient and family.
Palliative care is provided by a team of doctors, nurses, and other specialists who work together with patients’ other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in an illness, and it can be provided along with curative treatment. Palliative care is based on need, not prognosis.
“The outpatient palliative care program aims to help people living with serious illnesses manage their symptoms, navigate their care, and live well,” said Dr. Herman. The palliative care program provides care for and support to, not only each person it sees, but their families too.
The new expanded program, which opened in October 2019, sees patients at the Lipson Cancer Institute at Linden Oaks and at Rochester General Hospital, as well as at Unity Hospital. It’s the first outpatient palliative care program to serve the Rochester Regional Health System, and it provides care that’s focused on accommodating patients and their families as an embedded program within the Lipson Cancer Institute rather than having to go to an additional clinic elsewhere in the community.
According to a study by Mass General Hospital and published in the New England Journal of Medicine, palliative care improves quality of life and can extend survival among people dealing with serious illnesses. The study found that integrating palliative care early in the treatment of patients with advanced lung cancer not only improved their mood and quality of life, it also extended their lives by more than two months.
"One of the most common misconceptions about palliative care is that it indicates treatment has failed—that it means giving up," said Vicki Jackson, MD, co-author of the study. "In this study, the addition of palliative care early in the course of illness extended the survival of patients with incurable lung cancer. These patients not only lived longer, they experienced improved quality of life and were better able to enjoy the time they had remaining."
Those misconceptions about palliative care ring true for Bridget Wohlers, NP, Lead Advanced Practice Provider for the new outpatient program. Wohlers sees palliative care patients regularly at Unity Hospital and says palliative care impacts patients’ lives in ways that other care cannot.
“We’re not just looking at one specific organ system or disease like other specialists. We look at the whole picture and how that effects the patient in more ways than one,” Wohlers said. “More than just physically, but emotionally and spiritually. Other specialists are looking at the numbers, we’re looking at how those numbers are actually making people feel.”
Approximately six million people in the United States can benefit from palliative care programs, according to the Center to Advance Palliative Care. Dr. Jeffrey Allen is inspired by the impact the new outpatient program will have on improving the quality of life of patients in the greater Rochester area.
“The program adds a very important dimension of care offered by Rochester Regional Health. In order to help people with serious illness, rather than having them committed to a lifestyle where they don’t have an opportunity to participate in activities that are enjoyable, we help people reengage in their lives, improve their mood and reaction to treatment with the goal of improving their quality of life.”
The benefits of palliative care to cancer patients are well established and have gained praise for improving quality of life among both patients and caregivers.
The American Society of Clinical Oncology (ASCO), the European Society of Medical Oncology, the Society of Gynecologic Oncology, and the American Academy of Pediatrics all recommend early use of palliative care in parallel with disease-modifying cancer treatment for cancer patients.
For patients with advanced cancer, evidence suggests that earlier referral in the outpatient setting can improve quality-related outcomes, including end-of-life hospitalization, emergency department use and intensive care unit stays; reduce cost of care; and improve patients’ physical and emotional symptoms. Early palliative care has also shown to decrease caregiver distress.
“There is a proliferation of literature that shows patients who participate in palliative care can live better with serious or life-threatening illness,” said Dr. Allen. “One of the fundamental reasons we are expanding our outpatient program at Rochester Regional Health is to help patients regain satisfaction from their lives in the setting of significant illness.”
Patients in Rochester Regional Health’s the new expanded outpatient program will work with a team of APPs, physicians, nurse navigators, administrators, social workers, and spiritual care specialists to maximize their quality of care.
“Because the program covers anyone suffering from a serious illness at our three locations—Linden Oaks, RGH and Unity—patients get care where they are already going to receive their cancer-directed care,” said Dr. Allen. “This allows for care that’s really focused on accommodating patients and families.”
The team manages physical symptoms, defines goals for care, and assists with complex decision-making; coordinate specialty services; address physical, intellectual, emotional, social and spiritual needs; and help patients maintain the most comfortable, active and independent life possible.
But perhaps what Dr. Herman is most proud of is how the new expanded outpatient palliative care program impacts Rochester Regional Health’s ongoing commitment to care.
“This is a statement that Rochester Regional Health and the Lipson Cancer Institute continues to be here for our patients and are providing a portfolio of care that acknowledges every stage of a person’s life.”
“It’s not just about cancer, it’s about taking care of people, and living well with serious illness.”
According to a 2019 poll conducted by Public Opinion Strategies, once informed about palliative care, 95% of poll respondents agreed that it is important that patients with serious illness and their families be educated about palliative care.
You may benefit from an outpatient palliative care consultation if you are living with a serious illness and are looking for additional support in managing symptoms and side effects.
Palliative care is appropriate at any age and at any stage in an illness, and it can be provided along with curative treatment.
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