Gifted journalist reveals inner thoughts at husband’s diagnosis, hospital treatment, end of life
By Marilyn Williams, MSHHA, MTS, BCC
The Cost of Hope: The Story of a Marriage, a Family, and the Quest for Life. By Amanda Bennett. Random House, New York, NY, 2012. Hardcover, 206 pp. $17.02.
Amanda Bennett’s memoir spans the meeting of her husband, Terrence Foley – “Mr. Bow Tie” in Peking, China, when she was a Wall Street correspondent, to his death from cancer at the University of Pennsylvania in December 2007. As chaplains we have the privilege of seeing and hearing snippets of similar stories, but Bennett’s book is unique in letting us know an entire story through the eyes and words of a gifted journalist. Bennett says her story is about marriage and love, about a man and his life, and “about family and everything we did to try to save the husband and father at the core of it” (p.9).
Telling of the evolving of their improbable love, Bennett remarks, “we fight constantly, we fight from the moment we meet…” and “we spend hundreds of dollars on calls. We talk. We fight. We make up” (pp. 24 and 32). In telling of the early days of their love, one can also see and taste the China of the 1980s as well as their fascination with it. In speaking of Terrence Bryan Foley’s death at 67, Bennett reminds us that he was a father of two teenagers, a Chinese historian who earned his doctorate in his 60s, and a man who played more than 15 musical instruments, and spoke six languages.
However, “The Cost of Hope” is also about the diagnosis of kidney cancer at the end of 2000, 76 scans, procedures and hospitalizations, drug trials, and three end-of-life warnings within seven years, as well as the thinking reflective of let’s see if the new drug will buy more time and “keep him alive if you can.” Somewhat unique due to the mobility of Bennett’s journalistic career, this story also included four insurers and countless numbers of doctors and facilities from the time of diagnosis in Oregon to Terrence’s death in Pennsylvania in 2007. Moreover, their story is also about life despite cancer – about work, family, and friends.
In reading this story of diagnosis, treatment, and quest for life, I found myself asking: where are the chaplains? What pastoral or spiritual care did Bennett and her husband receive throughout the years? Finally in the book’s last pages there are two references to chaplains – neither unfortunately would make a hospital chaplain proud. The first reference is one name from pastoral care in a list of the 27 providers of care from the medical records of Terrence’s last hospitalization – a time, Bennett stated, that she couldn’t keep track of everyone who entered their hospital room. Then there is the following statement from Bennett saying after I signed the papers for hospice care: “A chaplain stops by to pray with us. She and I chat. She confesses that she does not like her work much. It leaves her exhausted and hopeless.” One can only surmise and hope that this woman was not a board certified chaplain!
In addition, although a story of the quest for life, Bennett’s book is also about looking back for answers to a number of questions. Why did I do what I did? Did I do the right thing? Why did the doctors do what they did? Why did Terrence do what he did? What were the medical costs or what Bennett calls the cost of hope? It is also a story of what she and Terrence did not know about the disease itself, as well as the costs. For example, Bennett writes early in the book about their blind trust regarding the first surgery, saying they knew little about the surgery or its cost and had done more research regarding their real estate purchase.
Bennett’s search for these answers led to meetings with the physicians around the country who provided her husband’s care as well as review of his medical records and bills of $618,616 of which almost two-thirds were for the final 24 months. She concludes that the system was designed for everyone but for Terrence and her, and that their quest cost more than it should have. She also wonders if they would have made wiser, less expensive choices if they could have more clearly anticipated the costs.
Nonetheless, she writes: “Did I do the right thing? I’m not sure I found the answer, or that I ever will. What I found instead was the cost of our hope. Was that hope good for us? Without question. For us the fight for life, with all its frustration, confusion, and failure, changed what should have been the seven most dismal years of our lives into the seven most wonderful” (pp. 197-8). Also, in speaking of the last clinical trial, which gave them 17 more months (versus 14 months for the average patient), she reflects that it gave them an afternoon of looking at the Mediterranean with their daughter, the day of moving their son into the college dorm, their 20th wedding anniversary carriage ride through Philadelphia’s cobbled streets, and a final Thanksgiving with family.
Yet she also writes, “Surely we must come up with a better way of helping ease families to gentler and less costly transitions” after saying of herself and Terrence, “we knew neither of us would want to push on past the inevitable,” noting that both had living wills but “neither of us could clearly see the inevitable until it was absolutely unavoidable” (pp.199-200). The unavoidable for them was Terrence’s return to the hospital with a stroke on Dec. 7, 2007 – hospitalization in intensive care and ultimate transfer to hospice. Bennett writes of this time: “Later, looking back, I will realize once again that the way I feel at this moment is one of the keys to the end-of-life debate: I still honestly don’t believe that it’s the final battle. Despite the overwhelming evidence, I believe only that we are facing long odds. Not hopeless odds” (p.188).
Not long before this, Bennett notes they were hoping for more time with one more drug. In reviewing the medical records of this hospitalization a month before Terrence’s death, she writes that she felt there was a silent battle being waged over the question of “Is Terrence dying or not” with her and the oncologist on one side and the other physicians and nurses on the other side. Bennett and the oncologist acknowledge that Terrence is dying on Dec. 10, 2007, after scans showed cancer in Terrence’s brain and a “cascade of hundreds of tiny strokes.” The discussion shifted to hospice, but even then Bennett said she still emotionally hadn’t grasped that Terrence would die in six months or less – he actually died Friday morning of that week.
In conclusion, I would say that every chaplain should read “The Cost of Hope” and reflect on what effective spiritual care could have offered Amanda Bennett and Terrence Foley as well as countless others as they journey with cancer or any other life-threatening or life-altering illness.
Marilyn Williams is director of pastoral care at St. Mary’s Health in Evansville, IN.
