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More awareness is needed to understand the benefits of both supportive care and palliative care in lung cancer.
Anna Bass, 62, of Victoria, Virginia, had been a longtime smoker, so she was not surprised in October 2016 when she was diagnosed with adenocarcinoma in her right lung. Her doctor had noticed a small spot on a CT scan two years earlier after she quit smoking. She had opted to hold off treatment, hoping that the lesion would not grow larger.
Bass, a secretary at Victoria Baptist Church, underwent a lobectomy to remove the top right lobe of her lung. She was happy to learn that she required no further treatment.
“My brother-in-law is an oncologist, and he said if they didn’t tell me to get chemotherapy or radiation therapy, it was because they weren’t necessary,” Bass recalls.
Throughout her cancer journey, Bass received an array of supportive care from her medical team, friends and family. Nurses addressed her pain, helped her learn to breathe properly again and demonstrated how to use an oxygen concentrator. She was encouraged to exercise, so she started walking.
But the most significant support Bass says she received from her care team was reassurance that her cancer had a good chance of being eliminated and likely would not reoccur.
“They told me that the cancer had been slow growing, the biopsy had clear margins and they would be following me for the rest of my life,” Bass says. “Today I’m cancer free.”
Bass’s story illustrates the many benefits of supportive care for patients with lung cancer, a population that tends to skew older and have more comorbid conditions than those with other forms of cancer. Bass, for example, has chronic obstructive pulmonary disease and is a recovering alcoholic, which restricts her use of opioids to alleviate pain.
When started early in the treatment continuum, guidelines show, supportive care can help patients live longer, improve their quality of life and cope better with the side effects of their disease and treatment, as well as comorbid conditions.
The terms supportive care and palliative care are sometimes used interchangeably, but there can be differences. The Multinational Association of Supportive Care in Cancer defines supportive care as “the prevention and management of the adverse effects of cancer and its treatment. This includes management of physical and psychological symptoms and side effects across the continuum of the cancer experience from diagnosis through treatment to posttreatment care.”
Palliative care, according to the Center to Advance Palliative Care, is “specialized medical care for people living with serious illnesses. It is focused on providing patients with relief from the symptoms and stress of a serious illness — whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.”
Lung cancer is a prevalent disease with a high incidence rate, so it has received a lot of attention from researchers over the years. This has led to advances in treatment and supportive care.
“This patient population still has a lot of needs, but the good news is that their prognosis and their experience have gotten better,” says
Dr. Jennifer Temel, co-director of Massachusetts General Hospital’s Cancer Outcomes Research and Education Program and professor of medicine at Harvard Medical School in Boston.
“Targeted therapies and immunotherapy have (become) more effective, so patients are living longer. And for the most part, the physical symptoms associated with these treatments are less. This doesn’t obviate the need for supportive and palliative care for lung cancer patients, but I think their needs have changed over time and they are becoming more like other advanced cancer populations.”
Supportive and palliative care for patients with lung cancer commonly involve the entire care team, observes Betty Ferrell, director of nursing research and education and a professor at City of Hope in Duarte, California. A care team includes physicians, nurses, social workers, physical therapists, occupational therapists, nutritionists, chaplains, psychologists and psychiatrists. Other aspects may include such novel approaches as music therapy, art therapy, acupuncture and massage.
“There are four key disciplines in (patient) care: medicine, nursing, social work and chaplaincy,” Ferrell says. “Physicians evaluate the patient’s medical condition, while nurses do a lot of symptom management and handle other responsibilities. The social worker assists the patient and family with issues such as finances, transportation, and in-home services — you can’t provide good palliative care without a social worker. And chaplaincy addresses the patient’s spiritual needs. Chaplaincy is critical.”
Dr. Arif Kamal, chief patient officer with the American Cancer Society and an associate professor of medicine and population health sciences at Duke University School of Medicine in Durham, North Carolina, agrees that spiritual support is vital.
“Chaplaincy can help when patients have existential questions, such as ‘Why did the cancer happen to me? I’ve always been a good person,’” he says. “That question usually does not have a scientific answer, but a chaplain can be very helpful in helping the patient work through it.”
On the medical side, supportive and palliative care can address symptoms unique to patients with lung cancer, Kamal adds. These include shortness of breath, cough, difficulty swallowing, loss of voice, coughing up blood, confusion and issues around brain metastases.
Almost all accepted treatment guidelines recommend that supportive and palliative care be started at the time of diagnosis in order to address the symptoms and side effects of treatment before they become debilitating. However, this often is not the case, Ferrell says.
“When people come to us with lung cancer, everyone is focused on treating the cancer — no one wants to talk about palliative care,” she explains. “Everyone’s response is, ‘It’s not time yet, let’s just start chemotherapy, then maybe later we’ll start palliative care.’ As a result, patients may not receive the supportive care they need until months after they should have. By the time they receive it, their quality of life has been severely impacted.”
Temel says, “We as a research and clinical community still have to find that sweet spot of figuring out how and when to integrate palliative care at the best time. But based on the data, early integration of palliative care for patients with challenging physical or psychological symptoms is still the best strategy.”
According to Temel, Massachusetts General Hospital was among the first institutions to demonstrate the benefits of initiating supportive and palliative care at the time of diagnosis.
“More than a decade ago, we published a paper that showed that when you involve palliative care early in the course of illness for patients with incurable lung cancer, they have a better experience with their cancer and have better outcomes,” she notes. “They have better quality of life, fewer symptoms of depression, spend less time receiving chemotherapy and have better outcomes at the end of life.”
Whereas a patient’s care team addresses the physical and emotional impacts of treatment, friends and family also play a critical role in supportive care. But there is always the risk of burnout.
“If you’re caring for someone with lung cancer, you’re a 24-hour caregiver,” Ferrell says. “That can be a huge burden on some family members.”
Lisa, who asked that her last name not be used, is a writer and publisher in Raleigh, North Carolina. She was a caregiver for her older sister during her lung cancer journey starting in 2014. She assisted her sister with everything from housing and meals to transportation to and from treatment.
Although she was happy to help, Lisa admits that the two years of caregiving were extremely stressful.
“There were times when my sister could be so critical that it was hurtful,” Lisa recalls. “Things were so hard at times that my goddaughter and I would go away so I could regain my composure. We would have a vent session and try to reboot my compassion meter.”
The family caregiving experience was far less dramatic for Christy Dawkins, 51, of Batesburg-Leesville, South Carolina. When she received a diagnosis of stage 3 non-small cell lung cancer in December 2019, her husband enthusiastically jumped into the role of caregiver. He took a monthlong sabbatical from work to care for her, doing all he could to keep her spirits up.
“He was there for me through all of the trips to receive radiation treatment and everything,” Dawkins says. “He really helped me through it.” Meanwhile, family friends created a meal train on Facebook so that the family wouldn’t have to worry about cooking during such a stressful time.
We had people dropping off meals every night,” Dawkins recalls. “That was a huge help.”
Because lung cancer is more commonly diagnosed in older people, many family caregivers are older themselves and may be dealing with their own health issues, such as diabetes, heart failure and arthritis, Ferrell says. But their involvement can be extremely important to the patient. They are an additional pair of eyes and ears, and they often are directly involved in making sure the patient receives the care they need.
But the heaviest burden they may bear is managing the patient’s emotional symptoms.
“We often don’t realize the role that caregivers play in helping patients
to keep going despite depression or anxiety,” Ferrell notes. “There’s a lot of fear, anxiety and emotions associated with living with lung cancer.”
Though supportive care for patients with lung cancer has been an integral part of treatment for many years, misconceptions still persist.
“Most common is the belief that palliative care and hospice are synonymous, so that when we talk about palliative care, sometimes patients and their families have worries that that means they’re at the end of life,” Temel explains. “It’s up to doctors, nurses and social workers to explain the distinction between palliative care and hospice care and the role of both services to allay those fears so patients are more accepting of the involvement of palliative care.”
“There must be educational campaigns that teach people how the emphasis during these conversations is not on end-of-life planning,” he says. “In my clinical practice, most patients are not dying. I have a large number of patients who have been seeing me for years because what we’re talking about is long-term distress, as opposed to an acute end-of-life type plan.”
Ideally, supportive and palliative care discussions are initiated by the patient’s medical team at the time of diagnosis. If that doesn’t happen, the patient and family caregivers should inquire about needed services, Ferrell says. “If my spouse or a parent is diagnosed with lung cancer, what do I want as a spouse or daughter? I want them to receive the best care possible,” she says. “So that’s the question every patient and caregiver should ask: ‘What about palliative care?’”
Concludes Temel: “I often remind my patients and their families, especially if I think they would benefit from something like palliative care but are resistant, that having cancer is hard for everyone and they should at least be open to accepting any support we can give them. Patients and their families talk about how it takes a village on their side to get through a cancer diagnosis. But it also takes a village on the clinician side. As an oncologist, I’m always going to do whatever I can to support my patients and their families. But the struggle is significant, so I rely on my colleagues who are social workers, nutritionists and psychologists to help out. Patients should take advantage of all of the services we have to help them navigate this very challenging time in their life.”
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