Tuesday, January 14, 2014

Terminally ill? It needn't be a fight to the death

Jan 14, 2014

The New York Times

MS LISA Bonchek Adams has spent the last seven years in a fierce and very public cage fight with death.

Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease.

In the last month or two, her broadcasts have changed in tone slightly; her optimism has become a little less unassailable.

At the end of last year, the cancer that had colonised her lymph nodes, liver, lungs and bones established a beachhead in her spine, the pathway to her (so far tumour-free) brain.

In October 2012, I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except painkillers, and allowed to slip peacefully from life.

His death seemed to me a humane and honourable alternative to the frantic medical trench warfare that often makes an expensive misery of death in the US.

Among doctors in America, there is a growing appreciation of palliative care that favours the quality of the remaining life rather than endless "heroic measures" that may or may not prolong life - but assure that the final days are clamorous, tense and painful. (And often leave survivors bankrupt.)

What Britain and other countries know, and my country is learning, is that every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties.

It seemed to me, and still does, that there is something enviable about going gently. One intriguing lung-cancer study even suggests that patients given early palliative care instead of the most aggressive chemotherapy not only have a better quality of life, but actually live a bit longer too.

Ms Adams' choice is, in a sense, the opposite. Her aim was to buy as much time as possible to watch her two children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team.

The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her.

Her relationship with New York's Memorial Sloan-Kettering Cancer Center provides her with intensive, premium medical care, including not just constant maintenance and aggressive treatment, but such Sloan-Kettering amenities as the Caring Canines programme, in which patients get to cuddle visiting dogs.

Any reader can see that Ms Adams' online omnipresence has given her a sense of purpose, a measure of control in a tumultuous time, and the comfort of a loyal, protective online community. Social media has become a kind of self-medication.

Beyond that, whether her campaign has been a public service is a more complicated question.

"I am public about this disease in order to shed light on the daily lives of women living with this diagnosis, rather than hiding behind the pink party line that is the only one that gets the spotlight," she told me in an e-mail message.

(The ubiquitous pink-ribbon breast-cancer campaigners have been faulted for overselling the wonders of early detection and giving short shrift to research.)

Her digital presence is, no doubt, a comfort to many of her followers. But, as cancer experts I consulted pointed out, Ms Adams is the standard-bearer for an approach to cancer that honours the warrior, which may raise false hopes, and that - implicitly - seems to peg patients like my father-in-law as failures.

After perusing Ms Adams' blog, Professor Steven Goodman, an associate dean of the Stanford University School of Medicine, told me: "I'm the last person to second-guess what she did. I'm sure it has brought meaning, a deserved sense of accomplishment. 

"But it shouldn't be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage." 

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