Treating Cancer: Who’s Caring for the Caregivers?
We’ve come to understand the harsh psychological cost of a cancer diagnosis on patients and their families. But little attention is being paid to the doctors.
The pale walls of Abha Gupta’s office in Toronto’s Hospital for Sick Children (SickKids) are bare, except for the corkboard hanging by her desk. The shiny metal frame holds what the 40-year-old oncologist considers a window into her practice. She never intended to become a collector of photographs, but her job left her little choice. When patients or their families give her snapshots of their lives, how can she refuse? Some photos depict a smiling patient receiving treatment; others show a child with a horse or being kissed by a dolphin while on vacation. The collage is a testament to Gupta’s seven years on staff at both SickKids and Princess Margaret Cancer Centre. She estimates that half of the people on the board are dead.
Gupta sees upward of 20 patients-a mix of children and adults-during a workweek that lasts about 50 hours. One of her recent cases was Taira Stewart, a 35-year-old mother of two from Brampton, Ont. Almost four years ago, Stewart was diagnosed with leiomyosarcoma, a rare cancer that usually attacks the body’s soft tissue; in Stewart’s case, it targeted her left leg. She went through treatment and emerged “cancer-free” in 2011, but the following spring the tumours returned. This time, they dotted the inside of her body.
That diagnosis brought her to Gupta. A sarcoma specialist, the doctor knew Stewart’s relapse was incurable. Once soft-tissue tumours metastasize, patients typically have two years to live. It was an upsetting prognosis to deliver-Gupta is herself the mother of a four-year-old girl-but Stewart was undeterred. She agreed to a new treatment plan, one that involved radiation, aggressive chemotherapy and the possible removal of her leg. She also married her long-time partner, Chris Hof. Taking cues from Stewart’s determination, Gupta focused on keeping her patient alive as long as possible. “She was a tough lady,” says Gupta, “who demonstrated as much bravery as anyone could in that situation.”
Stewart was an example of what Gupta tells her patients: Don’t let the cancer define you; live your life as normally as possible. It’s advice, however, that Gupta herself struggles to follow. While she understands she can’t save everyone, she has a hard time not taking a terminal diagnosis personally. “My time of grief isn’t tied to the day a patient dies. It’s the death watch itself,” she says. “Knowing the disease is progressing, and nothing I do can stop it.”
One of the most difficult points in her treatment of Stewart came last September, when Gupta told Hof to stop working and spend as much time as possible with his wife because she was going to be gone in a month. She watched the acknowledgement wash over Hof’s face, leaving the 53-year-old in tears. Such conversations, says Gupta, never stop being difficult. “It’s too hard to bear the families’ sense of loss,” she adds.
Six weeks after Gupta’s talk with Hof, Stewart was transferred to a hospice near her hometown. She passed away on October 29, 2013, surrounded by her husband, father, mother-in-law and friends. Gupta, who loses at least one patient every eight weeks, was too depleted to immediately call and offer her condolences. “For a family member, a cancer diagnosis has both a beginning and an end,” says Gupta. “For me, there is no end. Each day brings either a new success or a new tragedy.”
Cancer is now the leading cause of death in Canada, killing more people than heart disease, diabetes and kidney disease combined. An estimated 187,600 new cases were diagnosed last year-about 500 Canadians a day. From those cases, the Canadian Cancer Society has estimated 75,000 died from the disease. As the population ages, these numbers are expected to rise. For each diagnosis, there’s often a support system of family and friends that suffers along with the patient. But that’s only part of the picture. “The reality is that cancer affects everybody, including caregivers,” says Anthony Laycock, manager for the Canadian Association of Psychosocial Oncology.
In the mid-1970s, as medical options became more widely available and the disappearing stigma around cancer opened a new dialogue, researchers grew curious about the psychological cost of a cancer diagnosis. How does it affect self-esteem? Can the inability to cope lower one’s survival rate? These questions have led hospitals across the globe to set up psycho-oncology centres to help patients and their families adjust to the stresses of treatment.
Largely unresearched, however, is cancer’s impact on those trained to treat it. “There’s this myth that oncologists are completely objective-that no feelings are involved,” says Leeat Granek, a 34-year-old Montreal-born health psychologist who teaches at Israel’s Ben-Gurion University of the Negev. “But oncologists are on the same roller coaster as the families. When a patient does well, you’re on a high; and when they do badly, you’re down.” This roller coaster can take its toll. According to recent U.S. studies, up to 38 per cent of oncologists experience burnout, a state of emotional exhaustion characterized by certain danger signs: impatience with staff, withdrawal from patients, a loss of focus and a rise in medical errors.
As a teenager, Granek witnessed her mother’s 18-year struggle with breast cancer. When she passed away, Granek wondered if the doctors shared her feelings of loss. Between 2010 and 2011, Granek spoke with 20 oncologists at Canadian hospitals for one of the first studies examining the nature and impact of their grief. The interviews elicited stories of self-doubt, powerlessness and guilt when cancer gained the upper hand-emotions doctors felt were taboo in the workplace. Some spoke about weeping when driving home from work; others revealed how anguish over a patient’s death kept them up at night. More than half reported battling prolonged stress. “I go through weeks where it’s very difficult to come into work,” said one doctor. “I don’t want to be here at all.”
Granek’s interviews suggest the need for support structures to assist oncologists. Until that happens, doctors must find their own method for acknowledging emotion without letting it affect performance. When Gupta started at SickKids as a first-year fellow, she worked on the general pediatrics ward overnight and watched a young patient suffocate to death because of the cancer in his lungs. She went home, traumatized, wondering how she could possibly deal with this as a routine part of her career. Her solution was to build “a wall of protection” between her hospital life and her home life-though she admits there’s spillover. After her daughter goes to sleep, Gupta still finds herself checking her work email and worrying about her patients.
Creating this division also means not divulging details about her personal life to patients and not meeting families outside of the hospital. Gupta says seeing a patient in the “real world” gives her a more intimate understanding of them as people, making it harder to do her job. She is affectionate with her patients over the course of treatment, giving them hugs or an understanding hand on a shoulder. But emotionally, she keeps her distance. “If I were to think about what a patient is going through as if they were part of my family, there’s no way I could work,” she says.
The medical community has started to address the problem of physician grief. While oncologists endure high levels of patient loss, there’s a growing awareness of the toll the practice of front-line medicine carries. In a 2008 survey of Canadian physicians, more than one-quarter said mental health concerns made it difficult to handle their workload. “It’s not useful for anyone to have a doctor who’s sick,” says Louis Hugo Francescutti, president of the Canadian Medical Association. “Like anyone else, physicians have needs, and the sooner these needs are addressed, the better for themselves, their families and their patients.”
At the 2013 Canadian Conference on Physician Health, held in Calgary, many speakers stressed the importance of a balanced diet and exercise. But there is, as yet, no effective and universally adopted approach for helping doctors deal with stress before it escalates. In the United States, for example, Balint groups have caught on. Created by British psychoanalyst Michael Balint in the 1950s, these intimate sessions bring doctors together to vent on issues such as work-life balance. Another initiative, pioneered at Ohio’s Cleveland Clinic, is an alert system called Code Lavender. Within 30 minutes of receiving a call, nurses deliver a “holistic-care rapid response” (reiki, massage, healthy snacks and water) to staff who have hit their emotional limit.
While these specific approaches aren’t prevalent in Canada yet, provincial physician health associations-originally created to combat substance abuse and mental illness-have expanded their treatment menus to include burnout prevention. Programs range from helplines in Quebec to stress-management centres in Ontario and British Columbia.
Gupta has never sought any formal assistance. The idea of meeting a psychiatrist seems futile. “It’s harder to talk about it than not-talking makes it real,” she says. If she’s feeling shaken, she’d rather turn to her team of nurses and social workers. According to a 2012 study, the majority of U.S. doctors prefer to lean on colleagues.
Granek hopes hospitals will set up institutional structures to avoid forcing doctors to create ad hoc coping mechanisms. “Just like oncologists learn how to read scans, they should also be taught how to handle their emotions. The ability to feel your grief fully is also what allows you to feel your joy fully,” says Granek.
Last Christmas, a card caught Gupta’s attention. The long rectangular note was speckled with glittery snowflakes, and in the middle was a small photo of a bald teenage boy sporting a blue knitted cap and a smirk. The card was from an 18-year-old patient named Michael Friedman, thanking the clinic staff for all they had done for him. When the teen found a lump pushing through the brown hair on the crown of his head in 2012, investigations revealed he had localized Ewing sarcoma, a cancer that grows in bone and typically develops during puberty. The cure rate, if it’s caught early, is 80 per cent. With treatment from the SickKids team, Friedman received a clean bill of health.
On the day Friedman was told he no longer had cancer, Gupta met him and his dad in her office. “I said Michael’s chances of getting cancer were now no higher than mine,” she explains. “It’s rare to be so confident someone will be fine-it felt good.” By September 2013, a year after his diagnosis, Friedman started his first year at Ryerson University in the social work program.
Friedman’s goofy grin made Gupta laugh. She pinned the card onto the collage of smiling faces interspersed with death notices. “You keep learning how to do this job,” she says. “It’s never easy.”