By Laura Prus
It takes a village to provide symptom management, Amy Haworth says.
As a clinical nurse in the Supportive Care Center at MD Anderson, she collaborates with physicians, counselors, nurses, social workers, therapists, pharmacists, dietitians and chaplains who enhance the quality of life for patients.
Recently, she worked alongside other members of the Supportive Care Center’s team to ease the conflicting emotions of a newly diagnosed patient with stage IV lung cancer and his wife. The young and active couple was stunned at the diagnosis, and doctors knew it would be a tough, uphill battle. For weeks, the pair came to the center so the patient could receive relief from physical symptoms, such as pain.
MD Anderson social workers and psychiatric nurses, as well as groups from the community, also developed a relationship with the couple and helped them learn to cope with their anxieties, eventually alleviating a great deal of their distress.
Also known as palliative care, supportive care seeks to improve quality of life by reducing the physical and emotional burdens of illness through symptom management, supportive counseling and advanced care planning.
Though the Supportive Care Center often is mistaken as a direct route to hospice care, in reality it is a service available to most patients at any point during their treatment.
“MD Anderson focuses effectively on the treatment of cancer,” says Eduardo Bruera, M.D., professor and chair of the Department of Palliative Care and Rehabilitation Medicine. “The Supportive Care Center addresses the needs of cancer patients so they can take advantage of treatment.”
Patients come to the center, affiliated with the Department of Palliative Care and Rehabilitation Medicine, upon referral from their physician. Although sometimes physicians recognize that a diagnosis or treatment will be particularly difficult and refer a patient right away, it often is not until patients’ cancers have progressed that physicians send them to the center. However, symptoms are managed most effectively when the process is ongoing, starting at diagnosis.
Center services are available to patients at any time during their treatment. “Since most cancer patients will experience one or more difficult symptoms, almost everyone who goes through treatment will benefit from the center,” says Kay Swint, a certified hospice and palliative nurse and the department’s clinical administrative director. “Being referred by your oncologist is independent of your prognosis. We improve performance status so you can continue with treatment.”
Center staff work to educate both patients and physicians about their services. “There is a two-step education process,” says Marcel Lake, manager, clinical protocol administration. “Physicians often may not think of referring patients to the center, so informed patients are better positioned to ask their doctors about it.”
Once referred, patients generally visit every four weeks and develop a strong relationship with the center. Adjustments in their care are made and attainable goals are set at each visit. These efforts, among others, are a way of “keeping positive and hopeful during the difficult time of treatment,” Bruera says.
‘We can make a difference’
Many of the patients referred to the center receive treatment for multiple symptoms. “We start with what’s driving a patient’s distress and often see them multiple times,” Swint says. “If we can focus on one or two key symptoms, the other symptoms sometimes reduce without requiring additional medication.”
Most commonly, the center sees patients who suffer from fatigue, pain, a lack of appetite, anxiety or depression. “It’s a comprehensive approach, and we look at all symptoms, physical and emotional,” Bruera says.
Family members also can benefit and seek comfort from their exhaustion and concerns. “A lot of family members say, ‘You are the first person to ask me how I’m doing,’” Swint says. “We see that we can make a difference by addressing an unmet need.”
Unlike other groups that focus primarily on the disease, the center is patient- and family-centered. “Our big focus is on the patient and their family,” Lake says. “There are different components of a person. Someone is not just a cancer patient, but also may be a mother, a daughter and a wife.”
Therefore, the care for each patient is carefully considered. When patients arrive at the center, many symptoms are examined and open communication is encouraged.
Symptom assessments serve as effective guidelines, but understanding the patient’s point of view is imperative. “What we do is in response to the patient’s perspective,” Swint says. “We’re there to support them. They set the agenda for us.”
Communication and relationships are key
The center’s welcoming environment helps soothe patients even before they receive relief from their symptoms. Designed with floors that look like hardwood, soft lighting, chairs for family members, beds for outpatients and contrasting wall colors, the area provides a calm atmosphere.
“It’s a place where we’ve thought about comfort, and it’s somewhere where people can easily talk with each other,” Swint says, noting the importance of communication between patients and members of the supportive care team. “We’re good communicators. We help patients feel comfortable talking about cancer, and they tell us their needs and fears.”
Relationships are a key component to the success of the center. By forming a bond with the various center team members, patients find a safe place where they can discuss their emotions and receive relief from their symptoms. Staff members benefit as well, as relationships help them best assess a patient's needs.
“We can use the relationship to get to the core of what the patient is feeling,” Haworth says. “If someone says he’s fine, we can sometimes tell from his facial expression that he’s not.”
Building the relationship takes time but is a rewarding experience. “It’s an honor to sit, listen and witness someone’s story,” Haworth says. “It’s a privilege to work with these patients. It’s very personal, and there’s a trust people put in you.”
Since the department’s Section of Symptom Control and Palliative Care opened in 2000, many services have been added for patients.
It has expanded from an original outpatient center and mobile consultation service to include a 12-bed inpatient unit. A Supportive Care Center in the Division of Pediatrics also has been added. “We’re the largest symptom control and palliative care program in the United States,” Bruera says.
New ways to improve the quality of patients’ lives are continually being sought. “We do research on how to better measure what patients are feeling and how they communicate,” he says. “We’re continually changing how we evaluate the effectiveness of treatments and finding new ways to address problems. Methods are very different from what they were 10 years ago.”
One thing, however, has not changed. The village of physicians, counselors, nurses, social workers, therapists, pharmacists, dietitians and chaplains continue to offer hope and an improved quality of life to those patients burdened by the physical and emotional symptoms of cancer.