I knew Terence Foley as the genial man who would pick up his son at afternoon’s end when our kids were teenagers. We’d chat while waiting for them to finish up. Foley was witty and well informed on a wide range of topics, and I enjoyed our conversations. 

But it was his wife, Amanda Bennett, who was the family’s star. At a social gathering, when asked about her job, Amanda would say,  “I work at The Philadelphia Inquirer.” She didn’t merely work there, she ran the entire paper!  (She had also, by the way, won a Pulitzer.) I admired both her accomplishments and her modesty about them. 

I was shocked and saddened when I heard that Foley had died. I hadn’t realized he was ill. Then, recently, absorbed in a Newsweek excerpt of the book The Cost Of Hope, I suddenly realized that I was reading about Foley! Amanda had written this memoir about their life together and his illness, with a critical look at his end-of-life treatment.     

When I read the book, I learned what the engaging man I’d so enjoyed chatting with had actually been going through. Foley was diagnosed with kidney cancer in 2000; he fought the cancer until he died, seven years later. Two years after her husband’s death, Bennett decided to revisit and examine this experience. She interviewed his doctors, examined his tests, questioned his diagnosis, and looked at every recommendation, every medication, and every treatment with an eye to not only understanding her husband’s experience but understanding what it means, given our health care system, for all of us.

The result is both riveting and unsettling.    

When Amanda met Terence, in China in the ’80s, he was a deeply unconventional man who spoke six languages, played fourteen instruments, and pursued a variety of passions. It wasn’t love at first sight. To some readers, it won’t seem like love at all. There were tender moments and grand romantic gestures, but there was also plenty of sniping, bickering, and shouting. Concluded Bennett, at the time:  “I am unhappy when he is around. I am miserable when he is gone.”

This, to many, wouldn’t signal “I need this man,” but rather “I need therapy.” Which isn’t to say that Bennett’s love for Foley made no sense. He was just as smart as she was, he believed in her completely, and his obvious need for her was compelling. As was his eagerness to help her shine. “You are going to be somebody,” he told her. “You’re going to need somebody to take care of you.” They married, had a son, and adopted a daughter.      

Foley turned out to be just the right husband for Bennett, as well as a loving and devoted father. She describes a business trip to San Francisco, where she spent the day in a conference while Foley and one-year-old Terry had a blast riding cable cars. If you’re a mom with an ultra-challenging career, you’re going to need a husband like Terence Foley.   

After Foley was diagnosed, the family kept his illness under wraps. But behind the everything-is-okay façade his life became a grueling series of doctor visits, diagnostic tests, and cutting-edge treatments. As Bennett describes it, contemporary medicine is a profoundly confusing labyrinth that the patient must navigate with little guidance. As Foley sought treatment from one specialist after another, nobody but Bennett was paying attention to the whole picture, and, lacking medical training, she couldn’t evaluate what she saw. The doctors they counted on to save Foley not only failed to agree on crucial aspects of his diagnosis and treatment, but often contradicted each other. Nor were they inclined to work together. Foley and Bennett had no way to evaluate or reconcile their divergent opinions and recommendations.   

Foley’s treatment cost a small fortune, but insurance covered it, so the money was spent without a second thought. The problem, Bennett concludes, is not that the specialists, diagnostic procedures, and treatments were expensive, but that so many of them, in retrospect, seem unnecessary. Further, beyond a certain point the treatment Foley received was utterly useless, painfully drawing out his death rather than preserving his life.  

Foley, with the help of his wife and a number of well-intentioned doctors, continued to fight his cancer long past the point where the fight could possibly do any good. Dying, he was unable to let hope go and prepare for the end.    

The Cost of Hope takes a hard look at a tough topic. Nobody wants to die. But since we must, we want to die well. Did Terence Foley die well?  Modern medicine kept him alive for many precious years. But modern medicine, combined with his own powers of denial, ultimately failed him. He could have been, but was not, at peace when he died.   

What does it mean to die well? Can the way we practice medicine be improved so that more of us are spared the worst parts of what Terence Foley went through? The Cost Of Hope asks, but cannot answer, this question.  

Join the conversation

  • Roz Warren November 21, 2012 at 8:43 pm

    Carol thanks so much for sharing your perspective and experience with us. You’ve given us plenty to think about!

    Reply
  • carol November 21, 2012 at 12:36 pm

    I find it very interesting that the title of the book is called the Cost of Hope. As an oncology nurse, I watch health care providers and families struggle with cancer on a daily basis. Somehow, almost everyone, doctors and families included, seems to believe that talking about the dying process means a “loss of hope.” Instead of talking about the kind of death we think would be meaningful, we talk about “fighting” and “beating” and “winning the war.” Nurses such as myself often try to open conversation with gentle hints such as quality of life, and frequently have meaningful conversations with patients. However, I’ve seen time and time again that even as my patient expresses the feeling that they are at the end of their life, the spouse/child/parent doesn’t want to have the conversation. They each go on “fighting” for the other person.

    The cost of hope is often the one benefit of a terminal illness–the chance to savor life, have the meaningful conversations which define us as compassionate humans and plan to have a comfortable death with emotional resolution.

    Reply
  • Roz Warren November 20, 2012 at 9:44 pm

    Amanda, thanks so much for taking the time to post this comment.

    Reply
  • amanda bennett November 20, 2012 at 4:09 pm

    I am the author of The Cost of Hope. First off, thank you to Roz for this lovely review, and for bringing the book to so many peoples’ attention. This is clearly a topic that we all need and want to consider.

    As for my own story, I wanted to answer some of the comments here. I honestly don’t see our story as sad and heartbreaking. In fact, one of the comments I most appreciate from people who have read it (and it happens often) is that they laughed out loud. Terence was a very funny guy and we had a very funny relationship and we had a ton of fun together — right up to the end.

    And although part of the reason for writing the book was to illuminate the crazy pricing and lack of transparency and lack of coordination of this medical system of ours, I never felt that our quest was a waste or was totally misguided. We lived pretty much a normal life with our kids until the last four months.

    I did look back and realize that I was totally totally convinced that I could keep him from dying — EVER. But I just think that means we need to have better, more quality conversations…. not that I think that the whole fight was a waste. I think I should have gotten more realistic about four months from the end, not four days. But I don’t think I feel like we should have given up on the whole seven year fight.

    And as for the primary physician — we had an AWESOME primary physician, who was in the loop on everything. But this was so complicated, and so time consuming .. there’s no way that he could have played much of a role in this. Also (although he never brought this up) who would have paid for it? He had a waiting room full of people every time we saw him… where was he going to get the hours that this process needed?

    Anyway, the biggest message is not to overlook the HOPE part in the cost of hope. It was there, and it was real, and I hope that the book is not only instructive, but an appealing look into a family that had fun right till the end…..

    Reply
  • Ruth Nathan November 19, 2012 at 10:56 am

    Where WAS the primary physician? It’s all too sad and heartbreaking.

    Reply
  • Don November 18, 2012 at 11:29 pm

    Thanks Roz, for bringing this book to our attention and for the great review. What seems to be missing from the story – or at least the review – is a personal physician. We hear about multiple specialists, but not about a primary care physician – an internist, family physician, or (for children) pediatrician – who can conduct the orchestra of specialists (sometimes I think of them as “limited” physicians) and be in charge of representing the WHOLE patient’s interests and also responsible for communication with the family. Close communication, real communication. All too often, a serious illness pulls people away from their family doctor for a lot of reasons, and that is when – in my experience – a good family doctor can be of the greatest value. It is a shame – and an unnecessary one – that Amanda had to feel that she was alone.

    Reply
  • Eleanore Wells November 18, 2012 at 3:23 pm

    Scary stuff. We all deserve to “die well”, yet that’s not what medical system is programmed to do. I hope we figure it out before my time comes.

    Reply
  • Leslie in Portland, Oregon November 17, 2012 at 7:12 pm

    Thank you for your incisive review of this important book. After I finish reading it, I’m going to send both the book and your review to my primary care provider, the physician who is supposed to be the linchpin and coordinator, and translator for me, of my medical care.

    Reply
  • Mary Gilhuly November 17, 2012 at 4:58 pm

    The cost of hope.
    It is impossible to read this review and not find myself back in a doctors examination room at the cancer center of a local hospital in April, 2003.

    My father had been diagnosed with a rare liver cancer in September of 2002. It was Yom Kippur evening when he called me from his hospital room where he had been in for tests to determine the cause of a lingering fever. As I hung up the phone, I watched my husband and daughter laughing as they came down the block after a long day at Temple. I remember thinking, as I looked out the window at the easy banter they were sharing, that somehow, they didn’t know my dad was dying and I did…. And it seemed so strange and unnatural….

    My father vowed to “fight this damn thing” and later that month he endured a 14 hour operation that ultimately gave him … what… a few more months?
    But now it is April and in three weeks he has gone from walking upright to using a walker, to being pushed to his oncology appointment in a wheelchair…. We are sitting in the office and he says just this to his doctor. “How could this be?”
    Mind you- surviving 7 months with the diagnosis of his particular cancer is unprecedented- he was even written up and his case presented at a medical conference – but he had HOPED (had been CERTAIN, actually) that he would “beat this damn thing” – and here he was asking ” how” and “why” and really expecting an explanation that he could get his head around.
    The look on his face when the doctor said,”Tom, it’s time to consider hospice” was… shattered, shocked, angry, hurt, scared, sorry…. HOPE-less.
    And I thanked God at that moment that none of my siblings could see his face and that my mom, in her own shock, was looking at the doctor and not her husband of nearly fifty years. Because I realized then that I had never truly witnessed HOPEless…. A person literally devoid of HOPE….
    Later, when I re-read all the Harry Potter books, I likened the experience to being attacked by the “Dementors” who would suck the meaning and purpose out of someone’s existence and they would never really recover…..

    I guess I have to consider the title of the book- The Cost of Hope…. A major surgery and a couple rounds of chemo and radiation are not as crazy as some illnesses go. And the type of cancer meant it could never have gone on for several years…. And I am not the type of person who believes that people should be kept going beyond any possible reason of recovery….

    But, isn’t there some way we can keep the “hope” part going until the end? Is there some way to shift the “hope” focus away from surviving a terminal illness and on to something else? And, I am not talking about a hope in a vibrant, rewarding afterlife – that’s not my business…. But, can’t we start discussing end of life issues from the very earliest ages so that it truly does become a natural progression rather than just…. the END?

    Reply
  • Stephen November 17, 2012 at 3:02 pm

    Really good article. Lot’s of good stuff out there on hospice approach to dying with dignity and not sacrificing quality of life and death to wring every single extra minute out of life without regard to how much the cost to the patient, family, and society is. Also good comments on our dysfunctional “specialist/procedure” oriented medical system.

    Reply
  • kate November 17, 2012 at 1:35 pm

    Sounds like a great book. Everyone who has gone through terminal illness with a loved one knows this story and its conundrum. Thanks for the great review with really interesting, thoughtful personal comments about the author and her late husband.

    Reply
  • Just One Boomer (Suzanne) November 17, 2012 at 1:31 pm

    I can’t say this review made me what to rush to read this book. I’m sure it’s a good book, but the topic hits a little too close to home. We went through a similar experience with my father’s final illness and my husband, a critical care physician, has stopped work as an attending physician in the intensive care unit because he so often felt as though they were prolonging an unpleasant death, not life, at a tremendous cost. I think we all need to consciously confront our mortality and educate ourselves about possible end of life scenarios. I think one of the most important gifts we can give to our loved ones is to let them know how we want to check out. Don’t leave them to have to make our decisions. And on that note, I think I’ll take the dog for a walk.

    Reply
  • Andy November 17, 2012 at 8:45 am

    Good review. I read this book, but I got new insights from reading your review. Thanks.

    Reply