Why are some doctors so reluctant to stop aggressive treatments? An article last year in Critical Care Medicine helped explain why surgeons, at any rate, so often press on over the objections of patients and families. In talking with their surgical colleagues, Dr. Margaret Schwarze and her research team unearthed the idea of an implied contract between surgeons and patients. From the surgery perspective, it went like this: I'll take you to the operating room and will accept the risk that things might go wrong. You as the patient agree to stick it out, to work with me even if the post-operative ride is rough. Dr. Schwarze called it "surgical buy-in," and it was particularly threatened if patients chose too early (in their surgeons' opinion) to switch to comfort measures exclusively. Surgeons experienced feelings of "betrayal, unhappiness, disappointment, and even culpability" when patients or families, faced with post-op problems, said "enough." Saying "enough" and withdrawing life-sustaining treatments "were contradictory to the goals and values of surgery and surgical culture," according to the study.
Schwarze's key point, I think, is that the buy-in is implied and not necessarily said out loud. So when surgeons' goals of care clash with patients' goals of care, the potential for conflict is real.
I recently saw this dynamic play out in the case of Charles, an 80 year old man, a husband and father, who had lymphoma (a form of cancer) and who'd just completed a long hospitalization complicated by aspiration pneumonia. He'd been on a ventilator and was in the hospital for a month. A day after he left for a nursing home, he was back with another episode of aspiration. This time, though, one of his legs was very weak. An emergency evaluation showed that a vertebra in his mid-back had been almost completely destroyed -- possibly by the lymphoma, perhaps by an infection. Either way, his spinal cord was in peril and his ability to walk threatened. The neurosurgeons came in and worked through the night to stabilize Charles's spine. As is typical, Charles went from the OR to ICU on a ventilator. A few hours later, the family requested that the ventilator be removed and that Charles be permitted a natural death. This was not a decision that the neurosurgeons were happy with. It's just too early, they said. He might get off the ventilator in a day or two. They reluctantly allowed me to meet with Charles's family -- his wife, daughter, and son.
We spent over an hour reviewing the events of the last couple of months. From the family's point of view, the patient has been severely ill for several weeks, starting with his recent hospitalization for aspiration pneumonia and respiratory failure. During that hospitalization he had a swallow study. The recommendation was for pureed and thickened liquids only. Post-hospitalization he went to a nursing home but returned rapidly to the hospital with another round of respiratory symptoms and the new problem with his spine. They agreed to surgery because, in the son's words, "they had to give him a chance." The post-op outlook was worse than they expected. Their understanding, based on what the surgeon told them afterwards, was that the spinal cord problem had probably been present for days at least, worsening the chance of independence. Also, they knew that their loved one was critically ill with pneumonia and septic shock.
His son Jacob recounted numerous discussions with his father about his father's fierce need for independence. He was walking a week ago. "He would never want to be paralyzed, unable to control his feces and urine, eating nothing but baby food." Jacob wept as he said that his father would never forgive him if he was, at the end of medical treatment, dependent. His daughter spoke at length about the need to relieve suffering and assure a natural dying. His wife voiced agreement with these views. I suggested that the treating physicians felt that he should receive conventional care for another day or so before reaching a determination about further steps, but the family felt this would only prolong his suffering. I called the neurosurgeon to talk things over. He was unhappy -- among other things, a death only hours from the end of surgery would reflect badly on him -- but resigned to letting the family have its way.
This is what I wrote in my consultation note: "In my judgment, this is not a hasty or ill-considered conclusion. While it is true that the patient is only hours post-op and that the final neurological outcome cannot yet be predicted, it is more likely than not that he would not be able to regain full ambulation. The family appears to be taking into account the overall clinical context -- an elderly man with cancer who has been gravely ill for most of the last few weeks and who repeatedly voiced his unwillingness to be dependent, wheelchair-bound, 'hooked up to machines,' etc. Given that judgment, I can support withdrawal of mechanical ventilation and pressors [medicines to sustain blood pressure] now rather than later." Charles was taken off the ventilator and the pressors, moved to the Palliative Care Unit, and died peacefully just 24 hours after the surgery had ended.
They say that hindsight is always 20/20. I can only try to imagine the frantic discussion in the middle of the night, the surgeons anxious to use all their skill to preserve the patient's ability to walk, the family not in a position to digest the news and certainly not able to offer up an option. Had there been a more detailed attempt to tease out the family's goals for Charles, their concerns might have come out more forcefully and the outcome might have been different. No one can know for sure. What we do know is that this family elected to opt out of a buy-in they hadn't fully realized they'd bought. How many examples of conflict between the health care system and the people it serves can be traced to a miscommunication about both goals and process? Facing advanced illness and the high probability of significant disability, how many patients and families would opt out instead of buying in?