PARIS — “I thought I was as exhausted, and isolated, and neglected as I could get, and then he came home.”
Those were the words of Kate Washington, PhD, from Sacramento, California, as she gave a moving account of the immense burden she felt as caregiver to her husband with cancer.
She was taking part in the session, “I am FINE: Frustrated * Isolated * Neglected * Emotional,” at the European Society for Medical Oncology (ESMO) Annual Meeting 2022 earlier this month. In that session, speakers assessed the toll of cancer on patients, caregivers, nurses, and doctors.
Washington, author of Already Toast: Caregiving and Burnout in America, explained that she cared for her husband and young family while he was “suffering through two different kinds of lymphoma and really devastating stem cell transplants.”
When her husband was first diagnosed with a rare form of lymphoma in 2015, he was placed on a watch-and-wait protocol. At that point, he seemed fine, Washington said.
A few months later, he started coughing up blood. After being rushed to the emergency department, doctors found that a slow-growing lung tumor had ruptured.
Three weeks later, he came out of the hospital with a collapsed lung — an effect of his chemotherapy, Washington said.
But that was hardly the last word. He soon experienced relapse with a “very aggressive” form of his disease, and in 2016, he underwent a stem cell transplant.
“He spent 1½ months in the hospital…in isolation, not seeing our daughters,” Washington said. He lost his vision and developed grade 4 graft-vs-host disease, among other problems.
He was alive, just barely, Washington said.
“As you might imagine, I was pulled between the hospital and the home, taking care of our daughters, who were not seeing him during that time,” she recalled.
But every time someone asked her whether she was okay, she replied: “I am fine.”
“A total lie,” she admitted.
Washington felt frustrated, not only from the financial strain of out-of-pocket healthcare costs and lost earnings but also from fast evolving relationships and a feeling of being “unseen and underappreciated.”
Another jarring change: When her husband was discharged from the hospital, Washington was suddenly thrust into the role of full-time caretaker.
Her husband could not be left alone, his doctor had said. And with two young children, Washington did not know how she would manage.
The demands of being a full-time caregiver are intense. Caregivers, Washington explained, can spend 32 hours a week looking after a loved one with cancer.
Like Washington, most caregivers feel they have no choice but to take on this intense role — one for which they have little or no training or preparation. The nonstop demands leave little time for self-care and can lead to high rates of caregiver injury and illness.
Isolation often creeps in because it can be “hard to ask for help,” she said. About 30% of caregivers report having depression or anxiety, and 21% feel lonely.
“When he was very ill, I found it really difficult to connect with other people and my friends,” Washington recalled. “I didn’t feel like I could really adequately explain the kind of strain that I was under.”
Are Patients Fine?
Like caregivers, patients often say they are fine when they are not.
The toll cancer takes on patients is immense. Natacha Bolanos Fernandez, from the Lymphoma Coalition Europe, highlighted the physical, mental, and social strain that can affect patients with cancer.
The physical aspects can encompass a host of problems — fatigue, night sweats, weight loss, and the vomiting that accompanies many cancer treatments. Patients may face changes in their mobility and independence as well. The mental side of cancer can include anxiety, depression, and psychological distress, while the social aspects span changing, perhaps strained, relationships with family and friends.
Fatigue, in particular, is an underreported, underdiagnosed, and undertreated problem, Fernandez noted. According to recent survey data from the Lymphoma Coalition’s Global Patient Survey, 72% of patients reported fatigue. This problem worsened over time, with 59% reporting fatigue after their diagnosis and up to 82% among patients who experienced relapse two or more times.
Fatigue “may be getting worse rather than better over time,” Fernandez said, and many patients felt that their life had changed completely because of cancer-related fatigue.
To help patients manage, the Lymphoma Coalition has published a report on the impact of cancer-related fatigue and how to improve outcomes. Methods include greater awareness, regular screening, and interventions such as yoga or mindfulness-based cognitive therapy.
Are Clinicians Fine?
Nurses and physicians face challenges caring for patients with cancer.
Although “nurses love their jobs and are extremely committed,” the impact cancer has on a nursing career is often undervalued or “neglected,” said Lena Sharp, RN, PhD, of the Regional Cancer Centre, Stockholm-Gotland, Sweden.
Burnout, in particular, remains a problem among oncologists and nurses, and it was made worse during the COVID-19 pandemic.
Fatima Cardoso, MD, explained that burnout has an impact on doctors as well as patients because it affects communication with patients and performance. Physicians can, for instance, appear detached, emotional, or tired.
Patients may then feel less inclined to tell their oncologist how they’re feeling, said Cardoso, director of the Breast Unit at Champalimaud Clinical Center, Lisbon, Portugal.
It is important to remember to not just focus on the patient’s disease or treatment but to also ask how they are doing and what is going on in their lives.
Above all, “show that you care,” said Cardoso.
European Society for Medical Oncology (ESMO) Annual Meeting 2022: Presented September 11, 2022.
The Lymphoma Coalition Europe has relationships with BMS, Establishment Labs, Kyowa Kirin, Novartis, Roche, Takeda. Cardoso has relationships with Amgen, Astellas/Medivation, AstraZeneca, Celgene, Daiichi-Sankyo, Eisai, GE Oncology, Genentech, GlaxoSmithKline, and other companies. No other relevant financial relationships were reported.
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