Tuesday, October 4, 2011

Critical conversations: navigating between hope and truth : The Lancet

"I am afraid the chemotherapy is not helping."
"Please don't say that", she sobs. "I feel I have no hope."
My fight or flight response kicks in. Suddenly, I hate this conversation that moments ago seemed so important. I am ready to do anything to avoid being branded as the destroyer of hope. Why should I take on the burden of contaminating our easy relationship?
But I have lost count of her drugs. Every treatment is toxic. The central line hurts. She has lost her hair, endured multiple infections, and suffered nearly continuous nausea, vomiting, and fatigue. She has spent more time in the chemotherapy chair than with her youngest child and is prone to the most disabling side-effects. After several nights of steroid-induced insomnia, she said "My mind is racing, I want to kill myself." The fluid loads bloat her. When her skin peels she cannot walk. Her cancer returned barely a year after supposedly curative surgery. Various therapies kept it under control but lately there have been signs of resistance. She was so distressed recently that I sent her on a round of second opinions. It took nearly 2 months of expensive tests and appointments to conclude what we all knew: there was no cure.
While away on maternity leave, I half-expected her to succumb to the disease. On my return, I see her deterioration at first glance. Where she smiled in greeting, she now winces. Her continuous pain is untouched by a cocktail of drugs. Perhaps I had lost sight of the intense toxicities, but having been away has given me fresh insight into her troubles. I discuss ameliorating her entrenched symptoms, realising that she herself expects little respite. "A whole day feeling good, what would that be like?" she says dreamily. But when she continues to regard chemotherapy as a necessary evil, it strikes me that in all these years, it is almost certain that no one has ever suggested otherwise. After all, she is not yet 40 years old and the mother of three young children. Of all the patients we sell hope to, she would be the first.
I leaf through her notes. Every piece of correspondence since her early recurrence has forecast a gloomy outlook, but then someone is tempted by a new beacon of hope, however faint: a new clinical trial; a new specialist; a trial drug on compassionate access. She has seen every expert in the field—oncologists, surgeons, and radiologists. Incredibly, nobody has thought to tell her that every one of these costly, time-consuming, and often painful interventions has a diminishing chance of benefit and a rising risk of harm. Everyone expected someone else to have the difficult conversations.
Confronted by the seriousness of her symptoms, I feel obliged to discuss therapeutic harm. "Tell me what you want to achieve." She looks at me as if I am mad. I persist. "People often talk about goals in life. What are yours?" Her husband's answer is deadpan. "To be cured." She covets life, in both quantity and quality. I can only do something about the latter. "I think the chemotherapy is making you sicker. You should consider stopping."
About to speak, she instead begins to scratch her arm vigorously. "Oh, we forgot to tell you she has developed a bad itch", says her husband. Just then the nurse knocks on the door. I turn my attention to her liver function tests, screaming in red. In response to their devastation at stopping her chemotherapy, I feel consoled by her terrible liver function, which precludes further treatment but also buys me time before discussing the inevitable.
2 days later, her husband says, "We are going to China." He adds, "There may be herbs we can try." I sidestep the implication that I have outlived my value. "It will be good for her to see her family." Tragically, her flight is cancelled when she becomes encephalopathic. It is but days between her last visit and her death.
Her husband is grief-stricken but also confounded. "But she has been like this for so long, I didn't think she was dying." At first glance, this curious comment could easily be construed as a form of denial. But on reflection, his lament seems just. She was young, brave, and willing to accept toxicity—talking up the prospects of a further chemotherapy regimen seemed easier than tackling the truly difficult subject of the end of life.
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http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)61530-4/fulltext?rss=yes