The cost of hope and the price to be paid for refusing to accept death

WHEN her husband, Terence Bryan Foley, died, it took Amanda Bennett by surprise.

It shouldn’t have. He had, after all, been diagnosed with cancer seven years earlier, when he was 60. In the intervening period, he had undergone scans, been part of clinical trials, suffered appalling side-effects from some of the treatments, and lost enough weight for his clothes to hang limply around him.

Yet Amanda had never developed or acknowledged the development of the sense that he might be dying. Her position was that this was a chronic disease to be fought, not a fatal disease to be surrendered to.

Even the night Terence ended up in an emergency room, unable to tell doctors what date it was and with his measured oxygen levels dropping like a stone, his wife kept explaining to the doctor in charge that the objective was to get the sick man well enough for the new anti-cancer drug he was on to kick in.

The doctor stared at her, baffled to find that, despite the overwhelming evidence to the contrary, this self-evidently intelligent woman believed her husband was facing difficult, but not impossible odds.

She was wrong. Within days, Terence Foley was dead. The unthinkable had happened. Unthinkable because his wife had not only refused to consider death as a possibility, but had done her best to stop her sick husband thinking about it in that light either.

Returning home after a previous hospitalisation, he had taken out a pad and drawn a line down the middle, making a list of his possessions and deciding on paper whether they were simply to be thrown out or given to a named friend or relative. When she found him at the task, she yelled at him that he wasn’t going to die and discouraged him fairly vividly from continuing his list-making.

It wasn’t the first time she had rejected, on his behalf, the possibility of dying when he seemed to be equable in the face of his own demise. It wasn’t the first time that he had stiffened himself for a continuation of the fight against his cancer.

“I have seen other people — one a dear friend, the other a long-time colleague — both thread the needle of despair and almost certain death and emerge on the other side with a cure,” Amanda says today, to explain her adherence to hope.

“My friend was snatched from dying of Aids by a chance introduction to a doctor who prescribed an experimental antiviral cocktail.

“The colleague beat leukaemia with a cutting-edge bone marrow transplant.

“Both were told they were at the end of their lives. Both arrived at their cures only through mighty research, bravery and luck.”

She was strong, she told herself. She was brave. If she tried hard enough, she could save Terence too. Even three days before he died, even as he lay comatose in a hospital bed, even when the “death specialist” nurse who talked to her wrote in the hospital’s records that his wife had “verbalised understanding” that these were, definitively, his last days, Amanda was still planning for his next six months on the life-extending drug.

When, despite her best efforts (and his, and those of his medical team), he died, she mourned along with the couple’s two almost-adult children, but, as a journalist (she is an executive editor at Bloomberg news), decided to investigate the financial and other costs involved in his treatment.

She contacted insurers, hospitals, consultants, and, with the help of a colleague, analysed the incoming data. Keeping Terence alive had cost close to $750,000 (€600,000), almost two thirds of that sum expended during his last two years. Most of that money, she now knows, “was for treatments that no one can say for sure helped extend his life”.

Like most families stricken by cancer, hers had fought to get Terence into drug trials.

However, they had been careful, reading the small print of the contracts, and in one case, discovering that the drug for which her husband was about to opt would have no effect on his longevity.

The trial was to examine the toxicity of the medicine, to establish which dose could best be tolerated by patients. Her husband had refused to engage in that trial. He did not, he said, want to be just a guinea pig.

After his death, she visited the now-retired Cleveland Clinic oncologist involved, to ask him why he would have offered the opportunity to take part in a trial of a drug that would benefit the drug maker, maybe the hospital, possibly the consultant himself, and — possibly — patients in the future, but not Terence himself?

“Because he was eligible for it,” was the response.

Counting up the interventions revealed other unexpected bits of information, too. If someone had asked, towards the end of the seven-year battle, how many MRI scans Terence had undergone, her guess would have been 10 or 12. In fact, the records showed the figure exceeded 70. And the cost of those scans varied wildly. The insurance companies had paid one supplier one amount, another supplier 10 times that amount. While the cost had not directly affected the family involved, it does raise the question of how valuable they were — any of the 70-plus of them — in extending his life. Inescapable, too, are the implications such expenditure, replicated in its hundreds or thousands, would have for US health insurance premia generally.

Each document she discovered hammered home not just the financial cost, but the fragmentation involved in the treatment of a complex cancer case. One consultant might be in charge of one aspect of the case, another dealing with a consequence of the treatment recommended by the first. A nutritionist was available to try to keep the patient from losing too much weight, although, in this case, the patient gagged at the taste of the protein milkshakes recommended and couldn’t bring himself to eat the extra nutritious bars.

NO SINGLE individual was in charge — not the fault of any of the teams. A consequence of highly educated people doing research on the internet may be that they take their case from one expert to another, never seeking to have an overview which might question the wisdom of trying yet another treatment and might instead help the family come to terms with impending death and make the last weeks or months productive, painless and serene.

Looking back at the heroic efforts made to save her husband, the detail of which can be found on Bloomberg.com, Amanda Bennett says: “Since more than a quarter of all medical care is provided in the last two years of life, surely we must come up with a better way of helping ease families to gentler — and less costly — transitions.”

* End of Life Warning at $618,616 Makes Me Wonder Was it Worth it? Bennett’s account is also published by Random House as The Cost of Hope.

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