Richard was 69 years old, and he'd been in the hospital for 69 days when we first met. What had started as a routine operation turned into an up-and-down, lengthy hospitalization with three or four round trips from the ICU to the floor and back again. Along the way his wife, acting as his surrogate decision-maker when he was too sick to decide for himself, revoked his DNR status and implored the doctors to do everything they could. And they did, to no avail. Richard was on a ventilator a couple of times. He had several attempts to close his surgical incision, which had developed the nasty habit of popping back open -- dehiscence, we call that -- and setting the stage for infections that couldn't be cleared with multiple antibiotics. His kidneys were shot, and he appeared to be bleeding internally. Everyone but Richard's family -- and presumably, Richard himself -- realized that he was going to die in the hospital. The doctors and nurses in the ICU were hoping to stop what they thought was futile treatment and shift the focus to making him comfortable.
It was his surgeon, broken-hearted at the thought of losing his patient, who asked me to get involved. "Don't make things too complicated," he warned me. "These are simple, unsophisticated folks from the country. They don't understand much, and they're completely unrealistic about his chances for recovery."
Over the years I've learned not to make assumptions about what patients and families do or don't know or what they can or cannot understand. There are a few good rules of thumb about family meetings: Let the family do the talking. Explore what they already believe before delivering bad news. Make room for emotions. But every family meeting is different because every family reacts to serious illness in a loved one in its own way. The scientist Louis Pasteur said, "Chance favors the prepared mind." I try to go into family meetings prepared to be fully present, hoping to respond appropriately to whatever comes up.
I entered Richard's ICU room and, as is my habit, stood on the right side of the bed and put my right hand over his. He was awake and looked terrified. His wife and one of his five sons were in the room. I introduced myself and asked Richard how he was feeling. He answered, "I love Jesus I love Jesus I love Jesus I love Jesus I love Jesus."
This was not the response I was expecting. I didn't know how to answer, but I leaned forward to make better eye contact and said, "I'm not an expert, but I'm sure that Jesus loves you, too." Richard said, "I love God I love God I love God I love God I love God." All I could say in reply was, "and I'm sure God loves you, too." And then Richard said, "What have I done what have I done what have I done what have I done what have I done?"
The light went on inside my head. I leaned forward some more to get our faces closer together. "You didn't do anything," I said, still holding his hand. "You just got sick. And then you got a lot sicker than anyone expected. That's all. It's nobody's fault. You didn't do anything." Richard nodded and closed his eyes. His wife said, "No doctor has ever talked to him like that before," and she began to cry. We adjourned to the ICU waiting room, and within an hour the family had agreed to a new plan -- DNR reinstated, shift to comfort measures, transfer from the ICU, and pain relief. Richard came out of ICU and remained comfortable until his death several days later.
I told the story some time later, and a colleague asked how I'd known what to say to get the patient and family to a new, and more realistic, understanding. Dumb luck, I replied. I said that Richard had seemed uniquely ready at that moment to voice his underlying spiritual concern -- that he was being punished by God for some unknown transgression. I said that if I'd arrived ten minutes later or ten minutes earlier, I probably would have met the same resistance that other clinicians had previously encountered. I said I'd just gotten lucky, that's all.
It can be tempting to conclude that you have some special power, some extraordinary sensitivity that you bring to bear at moments of human suffering. And for those of us called to do this work, maybe we can become more attuned over time to nuances suggesting pain that's more than physical. If chance favors the prepared mind, perhaps it favors the prepared soul as well. On the other hand, it may be as simple as being in the right place at the right time, as elementary as asking a question. Dumb luck is still luck, after all.
Monday, March 14, 2011
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?