Patients and families face difficult decisions when the prognosis is poor, but communication and an action plan may help.
For Dann Siems, the headaches began in early summer 2009, fishing season in northern Minnesota’s lake country. At first, aspirin worked. But during a trip later that summer to Lake of the Woods, nothing could cut the pain.
On a Monday in August, his family doctor saw the brain tumor in a scan. The next day, the doctor gave him the news. Before the end of the week, doctors in Fargo, N.D., performed a craniotomy to debulk the tumor and identify it. His diagnosis: high-grade glioblastoma, an aggressive malignancy. His prognosis: poor.
“Your life is just going along fine, and then suddenly everything is turned upside down, in just a few hours,” says Lenore Siems, who helped her husband deal with non-Hodgkin lymphoma five years before.
There’s no “typical” way that patients or families react to a diagnosis of incurable cancer, says Margaret Bevans, a clinical nurse scientist at the National Institutes of Health (NIH) Clinical Center in Bethesda, Md. “You need to give yourself space, time and the permission to be anything: sad, angry, frustrated, weepy.”
After absorbing the initial shock of diagnosis, reactions often differ greatly. Some patients decide to treat the cancer as aggressively as possible, hoping to extend survival or improve their quality of life. Others seek quality of life in other ways, declining treatments that are not likely to be curative to avoid side effects that may be uncomfortable or dangerous. Experts urge patients to respect their own needs and desires as they plan for the next weeks, months or years. “It’s not right or wrong to make any particular choice,” Bevans says. “It’s about being informed and making [those choices] personal.”
“Dann was very clear on what he wanted,” Siems says. “He wanted to try everything. But at the same time, he was realistic—more realistic than I was.”
An environmental biologist who was 51 at the time of his diagnosis, Dann Siems started talking with his wife about finances. “He didn’t want to put us in a hole with medical expenses because he knew it was highly likely that I was going to be a widow,” Siems says. In part, that’s why the couple began investigating clinical trials, she adds. “And part of it was Dann being a researcher. It was his legacy—to contribute some knowledge to society.”
I was always hopeful. In the back of my mind, it was always, 'Maybe this will be a cure.'
Through a colleague, the Siemses got in touch with an oncologist at the National Institutes of Health, who helped him enroll in several clinical trials and receive chemotherapy—nearly all for free.
“He was a bulldog,” Siems says of her husband. When a treatment stopped working, he’d call up experts in the field, researchers whose work he’d found online, to learn more. She says she sometimes struggled to keep up with the medical jargon. “We’d be meeting with the doctor, and they’d be in this big, animated discussion, and I would raise my hand and go, ‘Could you maybe say that in English?’”
Misunderstandings between doctors, patients and families are common, says Deborah Schrag, an associate professor of medicine at Harvard Medical School in Boston. Schrag recently co-authored a paper in which she and her colleagues assessed how well patients with advanced lung and colorectal cancers understood the likely effects of their chemotherapy. Many patients thought the treatment would probably cure their disease, although that was rarely true. Chemotherapy for advanced lung and colorectal cancers can alleviate symptoms and extend life in some patients by weeks or months but only rarely for more than several years.
“There are consequences [for] these misunderstandings,” Schrag says. “You can miss out on the ability to take charge and control of how you want to spend the rest of your life.”
Some people, she says, don’t seek that kind of control, but most eventually want to have a role in deciding how to spend the rest of their lives. “Should I repaint the bottom of the boat? Breed the dogs this spring?” Schrag says. “Should I spend Christmas with my daughter and son in California or wait?”
Individuals will answer those questions differently, depending on how they expect treatment to progress. “I have a patient who is going off to her granddaughter’s bat mitzvah before starting chemotherapy,” so she won’t be as sick during the celebration, Schrag says.
Doctors and patients need to work harder to ensure shared understanding, Schrag says. “A patient might ask to talk through the best scenario as well as the most likely,” for example, she says. “Because they can be different.”
“We were told they were not likely curative,” Siems says of her husband’s various chemotherapy regimens. “But I was always hopeful,” she adds. “In the back of my mind, it was always, ‘Maybe this will be a cure.’”
Bevans says she often talks with patients about “reframing” hope. Maybe it’s not for decades more of life, she says. “But there’s always hope for daily comfort and that each day you live your life well.”
Shortly after Dann Siems’ initial surgery, his doctor urged the couple to begin talking through certain necessities: filling out an advanced directive, for example, so Lenore Siems would know what her husband did and didn’t want when it got to a point where he couldn’t communicate.
“We drew up a will,” she says. “We talked about his last days, how he would want hospice at home, out of the hospital.”
Her husband’s biggest fear wasn’t death, but pain, Siems says. “So that was in the directive—that he wanted everything and anything to manage his pain.”
Even on days when they were optimistic about his prognosis, they talked about his hopes for their son, how to pay for the boy’s college education and when to start putting aside that money.
A friend who was also an attorney spent a few hours with them one day, Siems says, discussing Social Security, disability and finances. “And then he asked us about the possibility that, someday, I might meet someone else,” she says, her voice cracking. Nearly two years after her husband’s death, she’s says she’s still not ready to meet anyone, but she knows that the fact that he encouraged her might be important some day.
Siems says she will forever be grateful to everyone who insisted that they talk through so many difficult topics before her husband died. An old friend of his was dealing with an incurable cancer at the same time, and that friend refused to talk about the possibility of dying, saying he didn’t want to be pessimistic. When the friend died, his wife struggled to make decisions in a state of grief. “She had to make those decisions alone, guessing what he wanted,” Siems says.
There may be weeks, months or even years of uncertainty between a diagnosis of incurable cancer and the care that hospice can provide. Siems says that was one of the most difficult things for her to accept.
“Especially in the beginning,” she says. “We needed a social worker, a counselor, someone who could say, ‘Here are some phone numbers. You’ve got a lot to think about. Here are some community resources.’ There was nothing. Not even a pamphlet.”
Some hospitals and cancer centers have social workers and counselors on staff, but they’re not always available when needed. At times, patients and families may need to advocate for themselves, Bevans says. “Ask: ‘Is there someone else in the office I can connect with between now and next week’s appointment? Because I might have additional questions.’” Therapy can help, too. Joseph Greer, a psychologist at Massachusetts General Hospital Cancer Center in Boston, recently found that a practical type of talk therapy, cognitive-behavioral therapy (CBT), can be tailored to patients who have untreatable cancer. Those who went through CBT were significantly less anxious, he says.
Greer works with patients to identify current stressors, which are those that have the greatest negative impact on life at the moment. In the case of incurable cancer, the primary stressor—the cancer—may be untouchable. “So we talk about those aspects of stressors that [patients] can affect,” Greer says. “One thing might be activity planning and pacing around treatment. Look at your week: When is your chemotherapy? What do you expect in terms of energy level? So let’s think about the kinds of activities you can still do and set some priorities.”
In terms of emotions, Greer says he tries to help patients identify ways to accept and tolerate uncomfortable feelings. “We find that if we can at least treat some part of the emotional burden, it can help people focus on the present and find a bit more relief.”
Bevans echoes the importance of moving beyond checklists of wills, medical directives and financial needs to life priorities. “Get the practical things done, put them away and leave time for the important stuff on your plate,” she says, so as to focus on “living, being in the moments you’ve been given.”
Siems says hospice workers arrived 18 months after her husband’s initial diagnosis and, because the couple had planned ahead, he was able to spend his final days at home, surrounded by friends and family. Just as he’d wanted.