A Young Woman With An Unpreventable Disease

Yesterday I pronounced a 30-year old woman dead. While I see death not uncommonly working in a major academic hospital, each case has a profound impact on me and this one in particular for its unrelenting pace and tragedy.

A month prior my patient had not been a patient at all. She was a healthy young woman, a lawyer who had just recently moved in with her long-term boyfriend and was hopeful about her future. Then she presented to our ER acutely short of breath and was found to have low levels of oxygenation in her blood. As her doctors suspected, x rays of her chest showed numerous blood clots in the vessels that supply blood to the lungs. What they did not expect to see was diffuse metastatic cancer studding her otherwise healthy lung tissue. With further testing they learned that the same cancer had also spread throughout her ovaries, lungs, and peritoneum. Weeks later she received her first doses of chemotherapy, a salvage attempt to fight back the cancer that was spreading through her body. Days later is when I first met her as part of the ICU team. She was decompensating quickly, and I only had a moment to introduce myself before we intubated her for impending respiratory failure. One day later after agreeing that their child would not want to be artificially kept alive on a breathing machine the family withdrew care. Hours later her heart beat stopped, and minutes later I was in her room examining her one last time before pronouncing her dead.

I spent most of that day with the family, all of whom were in disbelief. How had their 30-year daughter-sister-partner-friend who had been completely healthy up until one month ago just succumb to a metastatic cancer of which type doctors were not even certain? They kept asking themselves why this had happened. She never smoked, only drank socially, wasn’t into drugs, was in a monogamous long-term relationship, exercised, ate healthy, and went to the doctor regularly. If only there was something they could point a finger at, somewhere they could place blame, then they might be able to find some peace. To think that their loved one was merely a victim of random chance would be too much. As her primary doctor in the ICU, they turned to me for answers. But to their dismay I told them that as far as we knew her death was unpreventable.

On the long drive home, I starting thinking about this idea of an unpreventable disease. In a way, a 100 years ago all diseases were unpreventable. With the crude understanding of disease we had 100 years ago there were no reliable means of preventing disease. That is, although there were ways to prevent disease, we did not know of them. Heart attacks were viewed as random strikes of lightning. They seemed to occur in older people and maybe more so in men, but older age and male gender were certainly not risk factors that could be modified. Today we view heart attacks as largely preventable. Through risk factor management - healthy eating, exercise, smoking cessation, blood pressure and cholesterol management, daily aspirin therapy, etc. – one can significantly reduce his or her chances of having a heart attack. It’s not hard to imagine a hundred years ago a doctor in my same shoes trying to console a family whose loved one just suffered from fatal heart attack. “These things happen,” he would try to explain and “No, there is nothing we could have done to prevent it from happening.”

Our understanding of preventing disease has come so far it is easy to take for granted. Smoking cessation prevents lung cancer; blood pressure management prevents heart disease and strokes; mammograms prevent deaths from breast cancer. These ideas are so commonplace that we almost tune them out, yet  just a generation or two ago they were revolutionary discoveries. At the same time, there are vast gaps in our understanding of disease and a promising cutting edge of preventive health on the verge of realization. Weekly, new insights into preventing disease are being discovered and potential new strategies in preventive health being vetted in clinical trials.

I like to think that one day the disease that affected my patient will be preventable – that we will develop a genetic test to catch the disease early at a more treatable stage or, better yet, discover a way to prevent it entirely. And, I like to think that by relaying this story of an unavoidable tragedy we will better appreciate the insights we have into preventable diseases. For every unpreventable death like hers, there are dozens of deaths that are preventable and, in a way, even more tragic. It is in bringing to the public’s attention new insights and approaches to preventing disease and in breaking down barriers to established preventive health strategies that I hope BeyondApples.Org will function. Starting this blog has been a dream of mine for some time. But ironically, it was a case of a young woman with an unpreventable disease that gave me the final push I needed to create this space for talking about ways of preventing disease.

- Shantanu Nundy, M.D.