Talking With Hope Rugo

Faith Weil Rugo was diagnosed with early-stage breast cancer in 1982. When it returned several years later, her daughter, Hope, experienced the difficulties many family caregivers face: an uncommunicative oncologist, unexpected turns as the disease progressed, and uncertainty about how to talk to her mother about death. The fact that Hope Rugo was a doctor -- an oncologist and hematologist specializing in blood disease and bone marrow transplantation -- didn't make it any easier.

In fact, Rugo says the experience glaringly revealed her profession's inadequacies at helping breast cancer patients deal with terminal illnesses. And that propelled her to switch her specialty to breast cancer treatment. As a professor of medicine at the University of California at San Francisco for the past 18 years, Rugo now works with patients at UCSF's Carol Frank Buck Breast Care Center, where she is codirector of the clinical trials program. Part of her mission there is to make the experience of her patients and their caregivers better than it was for her mother and her.

Q. What was the deciding factor in your switching to breast cancer treatment?

A. I felt that there was clearly still a lot that could be done. Because my mother died from that disease and the support mechanisms for her at the end were insufficient, I thought this was a place where I could really use my energy to make a difference -- on an individual level, on a training level, and on a larger level. It's funny, because I couldn't deal with my mother's death and didn't deal with it appropriately up until the end, yet in some ways it was her energy and spirit that drove me to change and make what was the most important career decision of my life.

Q. What were the biggest surprises to you when your mother's cancer recurred?

A. The hard part was the unexpected nature of when somebody is going to need a lot of help. You can't really plan around that. My mother had cancer for a very long time and she was very functional during much of it. She had moved out here to spend time with her grandchildren, she had been driving my son to school, and I was working very, very hard in the transplant program. Then all of a sudden she developed a pelvic insufficiency fracture and wasn't able to stand. She had severe pain.

Another issue is how the cancer acts, where it goes to, and all that that's so hard to plan for. Even within the same disease, each cancer will take on an individual appearance. So first it was coming to the recognition of what happened and that we weren't going to be able to make it better, and then reorganizing our lives around that part.

No one tells you any of that. And when people are really sick, it's very hard for the patient and family members to deal with the inevitable end, so there are no preparations made. I see that in my own work -- I can talk to people until I'm blue in the face and mostly they don't really want to deal with that. So they end up kind of backing into it.

Q. In your experience, who resists talking about it more -- patients or their families?

A. Families. Family members will often tell the person, "You're not going to die" or "You're just talking negatively, and if you didn't talk so negatively, you would live longer." And that's terrible, because they can't even allow the person to talk about what is inevitable -- sometimes within days.

I think it's really important for a caregiver to recognize what the person is going through and talk about it. Obviously, this depends on what that person is capable of and what you're capable of, but one of the best things that 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."

The reverse can also happen, that everybody around the person wants to talk about it and the person refuses, but that's much less common. Part of the problem is that forcing someone -- or yourself -- to have that discussion is hard for caregivers. You have a busy life and you don't really want to deal with it. But it's really important to make sure that the person's affairs are put in order, bills are paid. And doing that doesn't mean that you're giving up or changing how much you care for the person or want them to live.

Q. Do you find that older people are more resigned to death?

A. It's very individual. I took care of a fabulous woman who was 98, and she was full of energy and spirit. She had no children, so her caregiver was a niece, who was also very old. The woman was in one of these old people's homes in San Francisco, and when they heard we were going to treat her, they couldn't believe it. But she just perked right up and got all better. Two years later, when a second treatment stopped working, she said, "I've lived long enough. We shouldn't do any more."

Q. What role do you think caregivers should have in making those kinds of decisions?

A. As a parent gets older, I think the primary caregiver should be involved at each decision-making point in the process. They should be considering questions like, "Are we going to continue treatments, and what's the gain in doing so? And if we don't, what's going to happen? How is this person going to die? What support do we have at home? What do we need at home? Do we need one caregiver? Do we need four? Do we have backup? How are we going to manage?"

Q. What do you do differently than your mother's oncologist did?

A. I tell people that one of the gifts you can give to an older person is to talk about and record their life, their memories, things that the person wants to impart, on "life tapes." Or have them write in a journal, or write notes to their grandchildren for them to open at important points in their lives. So few people can do it, because it's such recognition of the person's mortality. But in some way, it's creating perpetual life, immortality.

The other thing we do is talk to people about the resources that are available through hospice. Most of our patients are not going to die in the hospital, so you want to make sure they have plenty of support so that they're not in so much pain that they can't manage. We provide that help. There's a program where visiting nurses can transition to hospice. That's really nice because the patient and her family already know the people.

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 that you need." That's what I didn't have. The doctor was gone and I was supposed to just be dealing with this.

Q. Do you think cancer patients tend not to get the medications they need for pain and nausea?

A. Absolutely, they aren't getting the medications they need. We need better doctor education -- doctors and nurses are still very bad at getting symptom information out and giving people instructions. There's also a stigma for some people about taking medications. Caregivers can make it clear to older people, who might not be so willing to take pain medications, that it's OK to take them. In fact, that's a really key part of managing.

Also, if you tell someone in the hospital who's totally overwhelmed by their cancer that they should take the drug every four hours, and do this and this and this when they go home, what do you think they leave the hospital with? Absolutely nothing other than the prescription. So I'm a big proponent of giving people written instructions so that they at least have some way to remember what it is you told them. Otherwise they just don't.

Q. How were you unprepared for the progression of your mother's cancer?

A. 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 in the downstairs for her. Before we finished it, she had to move into it. And she didn't stay there for long -- it was just months. So although we had made those preparations, we weren't really set up for the rapidity and difficulty of that.

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 and there are two little children, you really need someone 24 hours a day. It's not like you need respite care for only four hours a day.

Q. At what point was this?

A. It was shortly after the pelvic fracture, in the last six months of her life. But we didn't really know at the time that it was going to be so short. 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? Is she going to sleep with my mother? My children's nanny was incredibly good; she let her stay in her room with her, and I stayed up all night. I worked all day and then stayed up all night.

As a caregiver, you're managing your own life, your career, your kids, and then not just managing the comfort and care of your family member, but also their access to medical care and medical decision making. You really need to be their advocate in the situation as well.

Q. And your mother's oncologist didn't talk to you about any of this?

A. It was interesting because her oncologist, who was very prominent, never said a word to me. Although I was a medical professional, I wasn't at the time a solid tumor oncologist. I was relatively young -- I had been a faculty member for eight years -- and I had little kids. But 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?

My mother 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." I didn't have the right drugs to help her die, and I didn't get referred to hospice. No one told me any of that, and I tell everybody that now.