Doctors cannot predict when the end of life truly comes

“For someone who went into medicine to ‘help people,’ you sure do talk about dying a lot,” my mother told me one day on our brief weekly phone call. I try to get in a phone call to my mother once a week so she knows I’m alive, surviving my intern year. I had been on medical intensive care unit (MICU) service and it had been a rough week. Being a doctor, death hovers around like an impending storm, we can only prepare ourselves for the inevitable impact. Dying is part of the vernacular, you have to be able to talk about it, extensively, respectfully and repeatedly.

Most of my first week in ICU was spent on family meetings to discuss goals of care. One of my attending physicians told me that part of critical care is explaining to families the limits of medicine. He explained, “We can keep doing things for patients. We can pound on his chest if his heart stops, we can keep this tube down his throat to help him breathe. Eventually the body will dictate when there’s nothing more we can do.”

Another  physician drew a graph on a piece of paper showing the steady decline in chronic diseases, that every dip in the graph shows an acute exacerbation of congestive heart failure or COPD, but it is always on a downhill slope towards death. Another physician told me it is our responsibility to help families know when it’s time to “let their mother to go to heaven.”

Years before this, I was on the other end of the table in an ICU having similar conversations with doctors about my own grandmother. No matter how it is explained, it’s a conversation that families never want to have.

For my patient, this was her fourth admission for severe COPD exacerbation, her third time being intubated for acute on chronic respiratory failure. Her lungs were failing and this was unavoidable progressive of her chronic disease. Over the course of a few days, we met with the family several times. With numerous parties involved, they went back and forth about getting a tracheostomy. Trying to figure out their mothers’ wishes, they ruminated over and over again in tears about what they should do.

Finally, they had decided on withdrawing life support, terminal extubation. We explained that the patient may not go very quickly, that sometimes these things take time. The family gathered around while we removed the tube. Nothing happened. The family held their breath expecting sudden death like you see on TV … flatline, breathing stops then stillness. This was nothing like TV. The patient was awake, calm, even blowing kisses. Her oxygen saturation oddly improved.

The days that followed were painful. There was a mix of sadness and frustration. The family pleaded with the team to help her die quicker. “We have all said our goodbyes. All of her children, nieces, nephews and grandchildren had flown in to say goodbye. We finally all agreed to let her go,” one daughter explained to me. Having made the decision to withdraw life support, they were frankly pissed in some ways that she was still going. It made them reevaluate their decision to not get the tracheostomy. Her continuing to live seemed to destroy the closure they felt in letting her go or reassurance about not getting the procedure.

While her medical history, labs, worsening progression of her disease and dependency on mechanical ventilation indicated that it would highly unlikely that she would survive on her own, I began to question if we were wrong. In the numerous family meetings with palliative care, we discussed at length that this was the terminal progression of her disease and she would likely be ventilator-dependent the rest of her life.

Were we wrong? Was this some sort of miracle or was our medical acumen slightly off? Should we have fought harder for a tracheostomy rather than comfort care? The attending doctor had explained that it is difficult to know how much time people will have after being terminally weaned but in the end, death is imminent.

Everyone wants a timeline. Each day, they asked me several times in various ways, “When will she die?” No one is ever satisfied with vague answers or no real answer. We don’t know when exactly. We can predict and see death coming some of the time based on vital signs. The ICU nurses would tell me about the look of impending death.

One seasoned nurse explained, “You can’t quite characterize it but you just know from experience that it’s coming soon.” Sometimes people die unexpectedly, and those that you expect to die sometimes live on far past your predictions. A few days later my patient passed away peacefully in her sleep, in a private comfort care room away from the hustle and bustle of the intensive care unit with her loved ones surrounding her.

Oftentimes the most heroic measure isn’t the action hero style chest pounding, doing everything possible. This Hollywood depiction of saving lives is what I had imagined prior to starting my ICU rotation. Sometimes the most heroic measure is in supporting families and patients in coming to terms with the end of life and avoiding futile measures that will harm more than help.

Christine A. Garcia is an internal medicine resident who blogs at Christine Chronicles and sbuim.com.

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  • disqus_qJEMXTKtR1

    As a palliative/hospice doctor, there are cases where end-of-life is truly predictable. In my practice, the conversation concerning wishes of the patient comes long before their decisions are implemented.

    There are several reason why this discussion does not take place: the doctor doesn’t have the clinical tools nor personality to have this discussion; they don’t have the time; the situation arises acutely; or dementia has set in. Sometimes as mentioned, the patient or family is not ready to emotionally have this conversation.

    A factor left out of this article is Quality of Life which must also be touched upon for a patient’s sense of reality. In this end-stage COPDer, was progressive dyspnea on exertion coupled with O2 desaturation worsening, not allowing her to ambulate nor function in her environment? Many of my patients recognize the impact of their limiting health problems on living a normal life.

    Taking Quality of Life into account might add to better predict when to initiate end-of-life care, and could allow better recognition when it is truly upon us.

    Gene Uzawa Dorio, M.D.

  • Suzi Q 38

    I have gone through what you are describing in your story a few times.
    FIL had a severe infection after a coronary bypass and three strokes.
    He lapsed into a coma and was placed on a ventilator.
    As he improved, we were told that he would be removed from the ventilator at a certain day and time. I was told to gather the family to say their goodbyes. We called a local priest to give him his last rites and say a few prayers. We all stood in his little room, holding each others hands in prayer in case he died as soon as the machine turned off the air that kept him alive.

    The nurse or doctor (I don’t remember, because I had been on statins for the last 10 years), turned off the machine and we all waited for his to possibly pass on to eternal life.

    Instead, my FIL woke up, opened his eyes, and said “hello.”
    He didn’t die then and lived another 11 years.

  • Suzi Q 38

    My mother was not as nice of a patient.
    I was designated as the adult child in charge of her medical care.
    I have 3 brothers and 2 sisters, all of whom could not decide about what to do with mom.
    She lived through cdifficle and MRSA, plus heavy duty steroids to save her eyesight after a condition called Giant Cell arteritis.
    She was finally languishing in her bed, and the doctor called me personally to tell me she wasn’t eating and she was going to die soon.
    He wanted permission to put in a shunt so they could feed her straight to her stomach. I told him fine, as I did not think it was a big deal. I figured it might give her a chance, and I wanted to see what would happen.

    My siblings were livid at my decision….I got the “Mom would have never wanted it to be this way…etc.” I told them to save the lecture, as the tube was going in the next day.

    Anyway, the tube went in, and at first she was not happy with me. In time, she got stronger and stronger.

    Soon, I made arrangements for her to be placed at a rehabilitation hospital for a month, then at home with home health nurses.

    She was and is still feisty.

    That was 4 years ago.

    She is 90 and still alive, walking all over the place.
    She calls us every week. She is a delight to her grandchildren.

    You just can not predict this stuff.

  • Meredith Gould

    Point of this story and all the comments: we really don’t and can’t absolutely 100% know when someone is going to die. What we *can* do is aggressively: 1) help shift attitudes about death so it’s viewed as part of life’s continuum, and 2) help patients and caregivers get Advance Directives, medical POA paperwork, and DNR stuff in place loooooong before anyone is terminal.

  • buzzkillerjsmith

    Accurate estimation of death times is beyond the limits of medicine at this time. If you google Pauline Chen prognosis death ” you’ll find a NY Times column on this.

    Perhaps algorithms will help with this in the future.

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