When the family caregiver to a woman with late-stage breast cancer is a doctor, she knows exactly what to do, right? Not necessarily. Hope Rugo was an oncologist, hematologist, and professor of medicine at the University of California at San Francisco when her mother, Faith Weil Rugo, had a pelvic fracture, a result of breast cancer that had spread to her bones. Up until then, the elder Rugo had been driving her grandchildren to school and otherwise helping out while her daughter worked a demanding job; now, suddenly, she needed her daughter to take care of her. And like most caregivers, Hope Rugo and her husband found themselves unprepared, overwhelmed, and uninformed about what to do next.
Rugo's mother died six months after the fracture, but her doctor never told the family what to expect in those last months, or even that her mother was likely to die soon. "She had bone-only metastatic disease, as far as we knew, and no one said, 'This is how people die when they have this kind of cancer.' Her oncologist, who was very prominent, didn't say a word to me." Although Rugo was a doctor herself, she was relatively young and worked mostly in cancers of the blood and lymph system. "He never said, 'You need to set up this and this.' Or, 'How are you managing at home? Here's an agency you can call.' Or, 'These are the kinds of narcotics that will ease her pain.' So how do you know what kinds of medications are going to help the person when you don't know what's going to happen?"
As caregivers, Rugo and her husband were especially unprepared for how rapidly her mother's condition changed. "We had moved to a bigger house because we knew ours wasn't big enough if she needed to stay with us, and we were converting a room downstairs for her," Rugo recalls. "Before we finished it, she had to move into it. Then it turned out that she couldn't walk down the little set of stairs to her room or do things on her own as easily, so we needed someone to take care of her. And if you have a household where both parents work full-time, you really need someone 24 hours a day. The first person I hired didn't work out. So I hired another person and then the issue was, where is she going to sleep?" Rugo ended up hiring two caregivers and taking the night shift herself, after working all day.
As a result of this experience, Rugo shifted her focus to breast cancer and joined UCSF's Carol Frank Buck Breast Care Center. Now, she says, she tells patients and their caregivers how they can expect metastatic disease to progress. "A lot of times what patients are really afraid of is the dying process. We tell them, 'These are the kinds of things that can happen. We'll make sure you have the medications and support you need.'" For example, the Center can connect patients with a program that transitions from nurse visits to hospice, with the same people providing the in-home care. "That's really nice because the patient and her family already know the people," she says.
Rugo believes that caregivers need to be involved at each decision-making point as a disease progresses, so they can help determine the next step and better prepare for it. But one of the most important ways caregivers can help parents with metastatic cancer, she says, is to talk honestly with them. "One of the best things you can do for somebody you really love is to talk about the future and what's going to happen. A lot of patients feel really, really isolated. They feel so guilty about dying because no one around them wants them to die, and nobody wants to talk to them about it. I wasn't capable of doing this with my mother, and that's something I would definitely change. I'm sure there were times that she wanted to talk, but it was too difficult for me emotionally. I loved her and I couldn't say, 'It's OK. You can die now.'"
Read the full interview with Hope Rugo.