You’d hardly expect a physician who spends his life trying to cure cancer to suddenly shift gears and suggest that maybe, just maybe, we should “stop trying”. But it turns out that New Jersey oncologist Dr. James Salwitz agrees with a review of data published in the September 2012 issue of Lancet Oncology, entitled “First Do No Harm: Counting the Cost of Chasing Drug Efficacy.” *
An accompanying Lancet editorial suggests that during the 10 years between 2000 and 2010, “many new cancer drugs produced marginal extensions in survival and simultaneously increased risk of treatment-associated death and side effects.” This compelled Dr. Salwitz to write:
“A hundred years ago, the medical model was one of acute disease and trauma. The major events that threatened life were infection such as syphilis and TB, childbirth and accidents. Chronic illness was rare because we did not live long enough, as the average lifespan in 1900 was 47 years. Medical science therefore focused on measures to prevent and treat infections, make birth safer, and treat injury. This resulted in the rapid rise in life span to 70 years by 1950.
“Then the model of illness changed to that of extended diseases such as heart disease, dementia, diabetes and cancer, and research focused not on preventing these illnesses but on treating the effect of these maladies.
“It is a chronic illness approach where large numbers of patients spend the last years of their lives debilitated while receiving increasingly toxic and expensive therapy to draw out functionally limited lives. This has increased survival only six or seven more years.
“The alternative model proposed is a modification of the present life-disease cycle, which, instead of focusing on deterioration in the last years of life, targets the prevention of disease during healthy youth.
“The concept is to achieve high functioning illness-free life for the longest possible time and then have the cycle complete with a short end-of-life acute phase focusing on quality.
“In other words: live a healthy life to, say, 90 – and then die quickly. Theoretically, this would produce a net longer lifespan and a higher functioning level with less suffering.”
I don’t know about the rest of you, but I’m drawn to this care model. As a person living with a chronic and progressive illness, however, I suspect that, as Dr. Salwitz realistically predicts, I will continue to be “debilitated while receiving increasingly toxic and expensive therapy” in order to draw out my “functionally limited” life. Depressing, right? (See also: “Live to 100? No Thanks!”)
Recently, one of my readers contacted me and mentioned that, like me, she’d successfully survived her own “widow maker heart attack “ – and that was 12 years ago. Immediately picturing the prospect of years more of these ongoing bouts of crushing exhaustion and debilitating chest pain, my surprising and unbidden gut reaction:
“12 years!?! TWELVE YEARS?!?!?! I can’t face 12 more years of this!”
The overpowering sense of what those who study Post Traumatic Stress Disorder (PTSD) call a “foreshortened future” may seem shocking to non-patients. Don’t get me wrong, my heart sisters: I’m not considering doing anything to speed up my inevitable departure from this earth.
But having watched others spend years dying on the installment plan in longterm care beds, bleakly incapacitated and helpless, I can tell you flat out that this scenario is not for me. I’ve already instructed my loved ones to bring in a nice big pillow for my face should that ever become my own reality. (And I also hastened to warn them that the pillow does not come out just because they find me annoying in the meantime . . .)
So what hope do those living with debilitating chronic illness have between now and that pillow-over-the-face time?
For many of us – no matter what our specific diagnosis may be – it’s a one-day-at-a-time regimen of taking our meds, fitting in exercise, healthy meal-planning, resting when we need to, juggling medical appointments and learning to appreciate each glorious sunrise for as many sunrises as we have left.
But for those people (many of whom are our health care providers) who have never walked in our hospital booties, this day-to-day regimen is hard to appreciate, as I wrote here in Healthy Privilege: When You Just Can’t Imagine Being Sick.
This is also what Dr. Victor Montori and his team at Mayo Clinic describe as the “burden of treatment” - a largely-ignored reality for millions of us who sometimes find that the relentless “work” of being a patient can exceed our capacity to cope. Their recommendation? Minimally Disruptive Medicine – a unique perspective, as they wrote in the British Medical Journal:**
“The strategies we have developed to manage chronic disease have created a growing burden for patients. This treatment burden induces poor adherence, wasted resources, and poor outcomes. Against this background, we call for minimally disruptive medicine that seeks to tailor treatment regimens to the realities of the daily lives of patients.”
While we’re waiting for Minimally Disruptive Medicine to transform chronic disease care for us, what does this mean in terms of our own day to day lives? It may simply mean deliberately incorporating more positive options into each day, and far fewer stressful ones. It means refusing to say YES when we mean NO.
Or, as Maya Angelou once said:
“Do the best you can do until you know better. Then when you know better, do better.”
But as Dr. Salwitz seems to be saying, shouldn’t all of us be doing this before we get sick?
Why do so many of us resolve to live well only after a catastrophic diagnosis like heart attack or cancer strikes us down?
Maybe, just maybe, if enough of us exercised and ate right and learned how to say NO more often, we could in fact “produce a net longer lifespan and a higher functioning level with less suffering.”
The brutal reality is, however, that very few people decide early on in life that a higher-functioning longer lifespan is what they’re going to focus on – in much the same way that most 20-somethings don’t have a retirement plan in place.
More appealing decisions in the here-and-now include eating too much of the wrong kinds of unhealthy (but oh-so-tempting!) foods, not exercising every day, poor sleep and stress management strategies, smoking or drinking too much, bragging about how “crazy busy” we are, and making other short-sighted lifestyle choices based on immediate gratification – not longterm health goals.
When I was at Mayo Clinic attending the WomenHeart Science & Leadership Symposium For Women With Heart Disease in 2008, I met many otherwise-healthy heart attack survivors who were triathletes, vegans, Buddhist meditators, and everybody in between. The sad truth is that even being what might be considered a health nut is in reality no absolute guarantee of warding off catastrophic health crises down the road. But we do have plenty of scientific evidence that things like not smoking, mindful eating, maintaining a healthy weight, better stress and sleep management, and daily exercise, for example, are promising ways to beat the odds.
And what if . . . ? What if we decided to follow the wise advice of Dr. Salwitz now, and encourage those we love to do it, too?
* “First Do No Harm: Counting the Cost of Chasing Drug Efficacy.” The Lancet Oncology, Volume 13, Issue 9, Page 849, September 2012.
** “We Need Minimally Disruptive Medicine.” BMJ 2009; 339 doi: http://dx.doi.org/10.1136/bmj.b2803. 2009;339:b2803
- “Healthy Privilege”: when you just can’t imagine being sick
- Why you’ll listen to me – but not to your doctor
- Why don’t patients take their meds as prescribed?
- Not just for soldiers anymore: Post Traumatic Stress Disorder after a heart attack
- Making heart-healthy decisions: are you on autopilot?
- Are you reading this sitting down? Don’t!
- Women live longer – but not healthier – lives than men
- What prevents heart disease “better than any drug”?
Q: Why does it take a catastrophic health crisis to get us to improve our lifestyles?