Marginal treatments at a high emotional cost from families

My father passed away about two weeks ago after battling a brain tumor for some time.

Initially diagnosed with an extensive inoperable mass one and one-half years ago, upon presenting with a focal seizure, he did well with only one medication for seizure control for about ten months. Around Christmas of 2009, however, he landed in the hospital in status epilepticus that took three days to control. After these days of florid hallucinations alternating with pharmacologically achieved stupor, he came out of it remarkably cognitively intact, still able to quote poetry and sing Italian opera arias in their entirety.

Although he was now unable to use his legs, he eagerly accepted the prospect of getting back on his feet by working hard in physical therapy. And though this never came to be, he managed to survive for additional seven months.

But my Dad was not your average guy. A survivor of World War II, an immigrant from the Soviet Union, a retired professor of mechanical engineering, he was at once a brilliant and an infuriating man. His stubbornness knew no bounds, and, even though he did not have the affinity for competitive sports, his drive to win was strong. He was a survivor by his nature and by his experience. So, when he was faced with the choice of a rapid decline and death versus some form of treatment for his tumor, he opted for the latter. As he and my mother put it, “doing nothing was not an option”. So, when offered 6 weeks of radiation (5 days/week, with the risk of cognitive decline, the prospect of which terrified him as much as dying) together with oral and intravenous chemotherapy, he bravely accepted all.

As the days and the weeks of his treatment wore on, he would give me regular updates on how many radiation sessions he had completed and how many were still left to go. He suffered side effects with minimal complaining and never lost hope that the treatment would help him achieve a measure of meaningful recovery. This was not to be.

While I accompanied my parents to many of his appointments, I did not go to them all. And for this reason, I cannot say for sure what was said in some of them, and how different the content might have been from what they actually heard. But I did make the point of talking to every one of the specialists on the phone after they saw my father. They were all appropriately measured in their enthusiasm and recommendations while talking with me.

But did they have the same demeanor with my family? Did my parents, both highly educated but neither medically savvy, take their enthusiasm for palliation as a promise of a cure? More importantly, are similar offers to try to prolong life by well-meaning and compassionate physicians to their desperate patients routinely misinterpreted on a grand scale by thousands as promises of cure? Is it possible that most people accepting the wonders of Avastin and other high tech interventions do not really internalize the reality that this and similar wonder drugs may give them merely two months of additional life? And further, do they think that these added months will be “normal” life?

Well, in my father’s case, he got superb care at every institution he went to. His doctors and nurses were knowledgeable, compassionate, humane; in other words they were everything that healthcare professionals should be. Yet their eagerness to help a desperate and scared man may have inadvertently registered as false hope for results that were unlikely. My father tolerated his treatments, but over time began to exhibit cognitive decline, at first subtle, then more pronounced and made exquisitely more painful by his over-achiever baseline. He eventually succumbed to aspiration pneumonia after we made the painful decision to provide him with comfort care only.

After seven months of this most intense good bye, my mother now understands end-of-life issues better than many healthcare professionals. She is a seasoned and experienced decision-maker in a grave situation. But this experience comes at a steep price and a little too late, since I hope she is never faced with having to apply it again to a highly personal situation. She will not regret any of the choices that she and my Dad made in this journey — they were all correct for them. But I have once again to question the wisdom and utility of making available treatments that make a difference at the slightest of the margins, that cost the society enormous resources and exact such high emotional costs from patients and their families.

Death is a natural conclusion to a life. Since we are not that good at “just sitting there”, the vocabulary of “do nothing” needs to change to “helping patients die with dignity and comfort”. The manipulative rhetoric of “death panels” has to be replaced with empathy and compassion. We are not above the laws of the Universe, we are not above the laws of physics and biology. We have to reposition our societal attitude toward death as an avoidable nuisance. And we have to ask: what are we prolonging in many of the cases that we treat at the end of life — life or death? In his better days, my Dad might have asked an analogous question: are we living longer or does it just seem longer? And then he would have chuckled.

Rest in peace, Dad.

Marya Zilberberg is founder and CEO of EviMed Research Group and blogs at
Healthcare, etc.

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