To Live Long or Live Well?

Arnold Tweed  

Failure to wean was a nightmare for ICU physicians. I do not mean weaning in the usual sense, weaning from attachment to the mother’s breast. Weaning in the medical sense is weaning from dependency on what was intended to be a temporary treatment; opioid analgesics are currently the popular example. In the ICU this usually meant dependency on an artificial ventilator for support of breathing.

Now in some circumstances this is to be expected and accepted. For instance, poliomyelitis or high spinal cord injury with respiratory muscle paralysis may cause respiratory failure that leaves a patient ventilator dependent, perhaps for life. But at the time I worked the ICU the more common and troublesome failures to wean were the results of chronic bronchitis and emphysema caused by cigarette smoking. There were other causes of course, pneumoconiosis from working in the coal or asbestos mines, cystic fibrosis and others. But by far the most common was the ubiquitous cigarette.

Chronic lung disease due to smoking comes in two guises, in the vernacular called “pink puffers” and “blue bloaters.”  Pink puffers (emphysematous) are usually thin, cachectic, barrel-chested individuals who feel short-of-breath and compensate by hyperventilating, ‘puffing’. As a result they usually maintain a better blood oxygen (O2) levels and consequently are pinker. On the other hand blue-bloaters (chronic bronchitis) have right-heart failure, oedematous swelling (bloating) and are more cyanotic (blue) because they have more red cells but carry less oxygen in their blood. ‘Pink puffers’ are generally more dyspneic but better compensated.

Mrs. N was a pink puffer. She had earned it by a 50 pack/year smoking history (a pack a day for 50 years) and was in an advanced stage of chronic emphysema. This meant that she could no longer consistently maintain adequate blood O2 levels by puffing, and her blood carbon dioxide levels (CO2) would then also rise. This was acute on chronic respiratory failure, a respiratory emergency. When she became severely dyspneic she would be brought to the Emergency Department, intubated and placed on artificial ventilation for 2-3 days. In her numerous previous admissions she had improved each time, had been successfully weaned, and had gone home. But her home leaves were becoming shorter and, with each admission, weaning was becoming more difficult.

It was a sunny Monday morning in the spring of 1978 that I arrived on H7 to find Mrs. N again occupying her usual cubicle, sedated and on full ventilator support. I expected a visit from her sons that afternoon. This was part of the challenge of caring for Mrs. N. She was a widow and her two sons were both prominent young specialists in our hospital, one was 3-4 years my senior. Both were extremely careful not to interfere in their mother’s care, but they were very attentive and always were kept very well informed about her treatment. I gathered also that few important decisions were made in that family without her input.

Her ventilator care proceeded as usual but, after about a week, two things were becoming apparent: she was not improving (at least to the extent that she could be weaned) and her sons were becoming uneasy. After considerable soul-searching, I felt it was time for a serious talk.

Failure to wean was a disaster in many ways. It was demoralizing for the ICU staff but even more so for the family and the patient. In our experience, patients with end-stage respiratory disease who could not be weaned, like Mrs. N, never left the ICU. They died in one, or two, or three weeks from pneumonia, sepsis or organ failure. It was an unpleasant, exasperating and emotionally draining experience for all concerned, and especially for the family and patient.

First Bill and Dave and I made small talk — doctor talk (a variation on jock-talk). Then I outlined their mother’s prognosis, as I saw it. It was my considered opinion, expressed perhaps with a little more certainty than my experience warranted, that she would not wean this time and would not leave the ICU alive.

Bill and Dave understood this; they had been warned of this eventuality. They didn’t want their mother to suffer unnecessarily but there was no other treatment available. These were the days before lung transplants. I stressed our shared feeling of helplessness when all that is left is to relieve suffering. We had much in common; as neurologists they were often faced with a similar predicament in which they could diagnose a neurological disease but had no treatment to offer.

I suggested that they have a family conference with their mother. Without seeming to be too grim, I could see only one scenario developing for her. Yes, the ventilator was keeping her alive, but as time progressed her life and theirs would get increasingly intolerable. The treatment we could offer, although the best available at the time, would not reverse her disease. She could, if that was her wish, ask that the endotracheal tube and ventilator be removed. I did not insist that they tell her she would probably die soon after, though I expected she understood. We all agreed it had to be her decision and I was careful not to interfere in their discussion. It was not a long discussion; she had already made her choice.

When we had all agreed I also promised Bill and Dave that a dash of morphine, 1-2 mg intravenously at the right time, would relieve her sensation of dyspnea and make her dying more comfortable. Morphine, though a respiratory depressant and normally never given to patients in respiratory failure, has a wonderful calming effect. We all, staff and family, understood that comfort measures would be maintained — nursing care, supplemental O2 and intravenous fluids — but we would not re-intubate her or do CPR. It was not necessary to write DNR (do not resuscitate) orders, they were understood implicitly by all of her treatment team.

We, the ICU staff and her family, were pleased with our preparations to make her last hours as normal as possible. We put Mrs. N in a private room down a hallway where her family could have unlimited access. She asked for her own pajamas and housecoat and discarded the hospital garb. Her sons brought flowers and pictures to brighten up her room and make it look like home. When all were gathered I removed the ventilator first, and when she started to breathe spontaneously I removed the endotracheal tube. She resumed gasping respirations and could talk, one or two words at a time, for the first time in several days. My last act was to inject a mg of morphine intravenously, and when she appeared to be comfortable I left, not to spare myself but because my part was finished.

The next morning I came in expecting to find her bed empty and all trace of her gone. To my utter surprise (and admittedly some chagrin) she was semi-conscious and puffing at a rate of 10-12 per minute. Her family had spent most of the night with her and had noted her slight improvement. They were discrete as always – no one questioned my earlier caution that she would not last till morning. The next day, to our further astonishment, she was more responsive and puffing at her usual rate. She looked no better and no worse than when she had been admitted. Since her family had been spending their days and nights in the hospital and we were not treating her actively, I suggested they take her home.

That was the last I saw of Mrs. N. She lived, at home, for about another six months, and later I learned that she had died quietly in her bed. I met Bill and Dave occasionally in the hallways. They were always polite and genial but they never discussed their mother. I am still baffled – was this my most miserable failure or a medical triumph?

It is the duty, the obligation, of a physician to inform patients and family about the possible outcomes of treatment. But what if one is wrong? Was I conveying certainty when no such certainty was warranted? Were my expectations influenced by her smoking habit and my general pessimism about smoking and lung disease?

I was certainly humbled; my attempt at prognostication discredited, my ego bruised, and my enthusiasm for predicting outcomes, especially regarding life and death, decidedly dampened. But, was it the right course after all? Would she have died in the ICU as I predicted and our decision to back off saved her life? Could I justly claim that my treatment was correct, though the outcome was not what I had predicted? My malign and ever vigilant genie just chuckled; he had won again.

But self-justification is not the reason for telling this story. Certainly we are all fallible and judgement is seldom perfect, but this story is not about me. It is about a woman who taught me two important medical lessons. One is that the likelihood that a medical prognosis will prove to be wrong varies directly with the confidence with which it has been pronounced. A life-or-death prognosis pronounced with grave confidence, to many listeners (especially relatives), is almost certain to go the other way. But the more important lesson she taught me was about quality of life. For her, even a few hours of independence were preferable to weeks of futile dependency and distress. Hers was not a theoretical answer to the question: is it better to live long or live well? Her answer was a commitment to what she considered most important and she chose to live well, to salvage a few hours of quality time. It may be a decision with which we will all eventually struggle. I hope we can do it with her courage and equanimity.

Author: Arnold Tweed

Retired anesthesiologist living in Toronto, Canada.