When End of Life Approaches, Who Can Afford the Cost of Hope?
Author Amanda Bennett shares the lessons of her new book on marriage and "the quest for life"
In her new memoir, The Cost of Hope: The Story of a Marriage, a Family, and the Quest for Life (Random House, 2012) Pulitzer Prize-winning journalist Amanda Bennett, an executive editor at Bloomberg News, details her husband Terence Foley's seven-year battle with colon cancer. Foley died in 2007 at age 67. The New York Times calls Bennett's book, which grew out of an article she wrote for Bloomberg, "equal parts marriage confessional and skilled investigative report."
The couple was married for 20 years and had two children. They met at a party in Beijing in 1983, when she was a foreign correspondent for the Wall Street Journal and he was the director of the American Soybean Association, although he introduced himself to her at a party as a Fulbright Scholar studying Sino-Soviet relations. "You’re cute. You’re a journalist. I wanted to talk to you," he told her when they next met. "How long would you have talked to me if I told you I was in soybeans?"
Bennett's book is not just about love and loss; it also offers her perspective on our health-care system. After her husband's death, she gathered all the bills they'd collected during his illness — for hospital stays, tests and treatments. The exact total, she discovered, was $618,616, much of it for experimental drugs, and more than $43,000 of it for the last four days of his life. After insurance coverage, the cost to the couple was $9,468, or about 4 percent of the total. While Foley was ill, the couple had made multiple moves as she changed jobs, and Bennett writes about the radical differences in the cost of treatments from state to state and from insurance company to insurance company.
Bennett recently spoke to Next Avenue about both elements of her story:
You describe how befuddling your husband's medical bills were — and you're a well-educated, award-winning journalist. What has to change for any of us to be able to make sense of our health costs?
We ought to be demanding transparency in pricing and costs and pushing hospitals, doctors and insurance companies to show us more clearly what the costs are. I’ve seen people ask hospitals about their costs and they are told, "You wouldn’t understand them." Just think if you went to an auto mechanic and said, "I want to know everything you’re doing. Show me an itemized bill," and they said, "You wouldn’t understand." Well, I might not, but I want to see what you’re charging me for.
In the short term, getting these complicated answers, when you’ve got a busy life and the additional stress of serious illness, is hard. The actual cost of services is very hard to determine. The best I can offer is to remind everyone that a lot of these charges are fantasy. Most people are now realizing that when they see a bill it’s a negotiating point for hospitals and insurance companies. When I got bills I saw that there was no relationship between what was being billed by hospitals and other providers and what was actually being paid by insurance companies. For the same procedures, the cost varies by date, by hospital, by state, by insurer.
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Referring to all the procedures that your husband underwent, including 76 CAT scans, you wrote that because you had insurance, "All of us, doctors and patients alike, could casually afford to pop them like cherry Twizzlers."
The system has to change. But it’s hard for everyone working inside the system to make a difference. If the doctor says you need a test, it’s hard for you to say, "Are you sure?" If we think there is a .0001 percent chance that it could do some good, we say, "Let’s do it." It’s hard to push back against the system, but I think we all must. People need to use common sense and add some rationality to this.
At some point late in your husband's illness, you started to wonder whether the measures you took to extend his life were more for your benefit or his.
What I've found is that I was pretty typical. You’re really pushing hard for yourself. You can’t bear the idea that you’re going to live without this person you love, whether it’s your parent, your spouse or your child. You really want that for yourself. The person who is sick is also trying to hang on for you. It may be important to try to distinguish between what you want for yourself and what you want for someone else, particularly when you have someone who’s had a long life, and whose quality of life is deteriorating — and they might be reluctant to let go because they don’t want to disappoint you. It’s hard, which is why I think you need somebody on the outside helping you.
Right now, the way the system is set up, nobody is a bystander. You have a stake, and the hospital has a stake, in not letting go. And the patient is not letting go, either. We need an outside voice. It could come from all kinds of different places. It could be a hospice professional. It could be a paid care manager or a patient care advocate. It could be a priest, rabbi or minister. It could be a family member, although they tend to have stakes, too. It’s got to be somebody who’s a little bit outside the whole thing.
What are the positives in our health-care system?
People are looking for someone to blame in the system. I didn’t find anybody evil in this system at all. Hospitals are trying to cure people. Doctors are trying to cure people. The professionals we met were totally professional. There is an excellent health care system in this country. We just don’t have an excellent way to pay for it. We have rationing, right now. People like me, with good insurance, have access to the best medical care available in the world. We do whatever we want and don’t need to think about it. And people without insurance don’t get anything because they’re priced out.
Also, we tried some extreme, really expensive experimental drug treatments. Most turned out to be very successful — maybe not to help my husband, but they are now keeping people with cancer alive two, three, five or six years longer than before. These amazing drug discoveries are going to be turning some previously fatal conditions into chronic conditions. We were thrilled to benefit from it a little bit and also to advance the research.
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So as everyone who reads The Cost of Hope realizes, I am pretty blunt about how much I was in denial right up to the very end. And I am very frank that that part had its costs. But I'm not sure I was clear enough about the benefits — although the whole book in a way is a testament to the benefits.
What advice would you give to someone just beginning the journey that you and your husband went on?
I’d say that you have to realize that denial is a two-edged sword. Denial is unbelievably positive. To call it “denial” is almost ridiculously understating what it is. It is incredibly powerful and useful in keeping your life normal and happy and not letting an illness consume your whole life. People desperately want their lives to be normal. That’s not a bad thing — that’s a good thing. The whole book in a way is a testament to the benefits. We absolutely refused to believe he was going to die, and as a result we never did act like he was going to die. And with everything we went through, we had glorious, happy, event-filled lives almost to the last minute.
That was wonderfully important to him and important to us. I look back on those seven years filled with hospitals and drugs and things as being part of the life of a family. When I look back on what we had, I don’t look back on it exclusively as the years he had cancer, but the years we went to Spain, the years we had family over, the years we did so much else. It helped us to be normal. It gave him the ability not even three weeks before he died to tell somebody, "I’ve had a wonderful, wonderful life."
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