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
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  • http://rlbatesmd.blogspot.com rlbates

    So very sorry to hear of the loss of your father, Marya.

  • Primary Care Internist

    Sorry to hear about your dad, I too lost my father recently, and although I primarily practice geriatrics, I was stunned at several aspects of his care near the end-of-life, mainly by intensivists. This was all at a small community hospital in the suburbs of NYC.

    He had a living will in place, prepared years earlier, was on his chart, and clearly delineated that he wanted no heroic measures, artificial nutrition, resuscitation, or intubation.

    Two months after a thalamic hemorrhage left him bedbound, severely cognitively impaired (has baseline mild vascular dementia from a prior CVA), he landed back in the hospital from a subacute rehab facility where he made virtually no progress. There one day his pulmonologist called my mother as he was in respiratory distress having failed IV antibiotics and said “IF WE DON’T DO SOMETHING NOW HE WON’T MAKE IT” so he was subsequently intubated, starting the cycle of prolonged intubation & icu stay, to PEG placement, tracheostomy, bedsore, back to “rehab” back to hospital with fever, more iv antibiotics, continued decline in cognition and awareness, finally back to the nursing home where one day had a low-grade fever, NH nurses wanted to transfer him back to the hospital but my mom said let’s try to work him up & treat at the NH, then he died the next day.

    I remember vividly the day he got intubated (i walked into the room in the ICU just as they had finished. The pulmonologist, nervously looking at me knowing that I was against this and that he and my mom were going against his wishes, told me “they had some trouble intubating him because his dentures were in his throat”. He had complete white-out of the right lung. I told him this was not what he ever wanted, and that I was 99% certain there could not be meaningful recovery, but he said “your mom isn’t ready for him to die yet”.

    Then about 3 weeks later, still in the ICU, that same Pulmonologist’s partner was attending to him, and i asked “so what is the point of doing a trach, what about just extubating him and seeing if he makes it? He did not want any of this, and my mom understands that, she just needs an honest prognosis from you.”

    His responses : “You don’t want to take care of your father?”

    Also regarding prognosis, I asked him facetiously “what are the chances he will get out of bed, or eventually make it out of the hospital, or make it back home, or make it back to his baseline status walking around the house and independent with adl’s and paying bills / going thru mail etc.”

    His answer: “GOD ONLY KNOWS”. I was simply stunned. I felt like screaming in the middle of the ICU, telling him “GOD??? WHAT THE F— ARE YOU TALKING ABOUT??? GOD TOOK HIM WEEKS AGO WHEN HE HAD A RESPIRATORY ARREST, THEN YOU DECIDED TO PLAY GOD AND PUT HIM ON A VENTILATOR”.

    The things some doctors do in the name of compassion are just unbelievable. I have little doubt that much of it is for reimbursement, and/or medicolegal fears. As for my mother, if the docs (who she saw as god-like) just told her, like i tell many of my patients’ families, what is the expected course (all of the above) maybe he could’ve died peacefully at home surrounded by his family, without restraints and trach/peg/foley etc., a few days after his stroke.

  • Ms. Beck

    I totally understand Primary Care Internist’s story. Both my father and brother stated they did not want all this high technological implementation applied to them when it only meant extending their life, but “what life?” It was forced on them anyways, mainly because of the one making the decisions for them.

    Most patients that I have discussed end of life care with have told me they want us to do something if the chances are good they can have some sort of life, but they don’t want it to be applied just to be a vegetable. Quality is more than quantity. Quality means dignity. Quantity is just a notion that some people used to push that we should do everything possible to extend life, no matter what the outcome. This was pushed at me in college and I disagreed with it then, and I disagree with it now. You do not have your optimal health if you are stuck in a bed with no future, and no ability to have realistic care given to you without notions of fantasies that being a cyborg-like entity is any form of life. It just extends the grief of the family, adds unbearable economic costs to them, and extends the time the patient lies there, possibly in terrible pain and agony. This is FALSE HOPE.
    Could you imagine having a business where dying people go for torture treatments to have pain and suffering inflicted on them for a price? That’s basically what some of this treatment is. The nation needs to reestablish it’s views on what healthcare really means.

  • pao

    I am sorry for your loss and appreciate your taking this thoughtful time ;”in real time” of personal experiences to share these difficult dilenmas. As each of the comments shared; it is perhaps the most common & painful of the new realities we face in practicing comprehensive compassionate caring in a technologic suave and profit motivated healthcare system. Sadly ,it is THE common realization that need to be addressed as real health-care reform. Sensitivity and wisdom requires open and honest discussions with family and among ourselves to explore and become comfortable with the reality that death is the natural end result of this life not a batting average for ego. This is a very important discussion for all health care providers.I believe a tool such as a modifiable apache scoring perhaps could help in discussons?
    Just yesterday i reviewed a courtesy update note from a oncologist on a mutual patient with a rapid progressive & complicated stage 4 Lung ca with brain, bone, liver mets& aggresive cachexia . I spoke with the patient who’s “take home messages” was she was “doing really well” . I wonder if Courage often defined as fighting a good battle vs.acceptance is another dsyfunctional manifestion of denial with distortions,deceptions and shifting a personal responsibility with truth or just additional blame & shame because we can’t defeat death .It is not only very costly in $$$ resources but also in personal relationships,lasting painful memories & exhaustion for patients,families ,friends and health care workers.How many PTSD patients are shell shocked and struggling after experiencing a loved ones’ last days in these prolonged suffering situations.
    I trust we could do better>

  • http://evimedgroup.blogspot.com Marya Zilberberg

    Thanks to everyone for your comments. How is it that so many of us get it, yet we cannot adequately articulate it to the public to get them to understand the difference between prolonging life and prolonging death? As a former ICU physician I witnessed so many situations where false hopes were too insistent to accept reality. Is it partly due to fragmentation of specialty services that people get the wrong idea? That there is a “positive thinking” bias in our decision-making? Perhaps docs need to do a better job reaching consensus among themselves before rendering individual opinions to patients? But of course that is yet another service that may not get reimbursed.

  • PAULMD

    Dear Marya,
    Very sincere, well written post and a timely departure from the usual cat & dog fights regarding primary care and specialty care compensation or political/policy stumping. I found the humanism very grounding, possibly because I have a “face” to associate with the personal content of your observations and your thoughts and feelings about your dad.

    I faced a similar experience when my Mother died of lung cancer while I was a resident. Thank you Marya and please accept my sincerest sympathies to you and your Mother on the loss of your Dad.
    Paul

  • http://evimedgroup.blogspot.com Marya Zilberberg

    Paul, thanks again for your comments and support. Hope you and yours are well.

    Marya

  • http://www.kathymorelli.com Kathy Morelli, LPC

    Hello –
    I worked in a cancer center for four years as a counselor. I was continually appalled by the inhumane extended treatments for people that extended life at a tremendous emotional and financial cost for maybe 6 months. I routinely saw drs tell pts they were cured when it was obvious they wer not.
    Peace to you and your family.

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