An excerpt from All Bleeding Stops: Life and Death in the Trauma Unit (Mayo Clinic Press, December 2023).
Trauma surgeons, particularly in our roles as directors of a surgical intensive care unit, must frequently chat with families of critically ill patients after they have sustained injuries. Unlike surgeons who develop relationships with patients and their family members during the planning of elective surgical procedures (think a kidney transplant recipient), we are thrust on families without their consent. When you roll your car, you cannot select who will care for you—it is whoever is on call at the trauma center. Therefore, we are not regarded as trusted providers but rather strangers, informing the family members of the catastrophic nature of injuries sustained by their loved ones. The responses of kin are naturally unpredictable. Patients typically have not discussed their desires for heroic medical care with their kin, so families are often at a loss regarding what the critically ill person would want. Guilt-plagued relatives have different opinions, and family dynamics often lead to struggles over control of final decisions. Most of us would rather deal with discovering the hidden injuries sustained by the patients than negotiate with family members and their underlying pathology. And the adage is true that all families (including my own) are dysfunctional in their own unique way.
Note, it is a right of all citizens to be healthy in the rest of the developed world, not a privilege. In the United States, we have no right to be healthy; rather, it is a privilege. But ironically, in the United States, no one can tell a family it is time to cease caring for their terminally ill relative. Therefore, we spend fantastic sums of money sustaining the lives of dying individuals. And a considerable proportion of the national health care budget is expended in the last months of patients’ lives. Giving futile care is wasteful—consuming precious ICU beds and tying up ICU nursing staff—and frustrating for the caretakers. Realize that when the ICU is jammed with dying individuals with no likelihood of survival, other patients who would benefit from the ICU level of care are stuck in the emergency room or the recovery room, often for days. And there is good data that ER overcrowding and delayed access to ICU care led to increases in death and complications in patients locked in a holding pattern. As there are often no financial consequences in the United States to the patient (taxpayers are saddled with the huge bill), the family members feel no pressure to move forward quickly with a decision. For an occasional patient, this would not be a significant problem. But there are often many patients for whom care is futile in the surgical ICU, so it can be very trying for the ICU team.
A layperson might respond, how do we know when care is futile? Are we, the critical care team, too quick to write off family members because they are old/difficult/taking up resources? It is hard to trust the doctors’ assessment that care is futile. Everyone has a story about a parent or grandparent who died by “medical error” (including me). And families focus on “miraculous recoveries” that they hear about by word of mouth. Let me respond to this by saying that I understand the family’s concerns and can empathize.
Recognize that not every bad patient outcome is the fault of the health care providers. I remember an angry family blaming the ICU team because their father was dying. The man had advanced alcoholic cirrhosis of the liver, metastatic cancer of the pancreas, and severe heart failure. All three conditions were individually in the terminal stages. But it was somehow the fault of the hospital and the group of individuals caring for him that he was doing so poorly.
We have a process whereby we regularly organize family meetings to include key family decision-makers, the ICU staff (physician assistants, nurses, doctors), and social workers. At times we include clergy members. This process takes a lot of time and effort. Unfortunately, many families have already decided that the critical care team members are somehow the enemy and that we are failing to do everything we can for their loved ones. Remember, the patients are in the ICU (certainly the surgical ICU) because of injuries they sustained or due to complications resulting from the care of a surgeon or a provider, not a member of the ICU team. The patient’s underlying medical condition or disease process may have led them to become critically ill. Or it may be a poor decision to operate or a technical error during surgery that resulted in the patient’s critical illness. But we in the ICU are the face of care at that point. And we certainly aim to advise the family members with the best data we have available as to the likely outcome and help them do what the patient would have wanted.
Here is a recent example of what we deal with daily. A ninety-year-old patient arrived at the ER after suffering a stroke. After the appropriate, evidence-based medical therapy to dissolve his clot, he had a massive brain bleed, a devastating complication and a known risk of this treatment. He underwent emergency brain surgery to evacuate a large amount of blood and then remained in a coma. The neurologist and neurosurgeon declared that there was no hope for recovery after an appropriate observation period of a week. We explained to the family that we had two options: a tracheostomy for long-term respiratory support with a feeding tube or withdrawal of care. The family stated that the patient had previously made it clear he would never want to be maintained in a persistent vegetative state. But they just could not agree to the withdrawal of care. We could not move him out of the ICU or out of the hospital without the procedures (tracheostomy and feeding tube). So he remained in the ICU for another two weeks until finally, after many more meetings, the family decided to withdraw care. Imagine dealing with three or four patients in the ICU like this every day. The ICU director and the entire ICU team often feel extremely frustrated by the agonizingly slow pace of the decision-making process. We understand that this is a unique and personal catastrophe for the family members, but we have all seen this patient/family scenario played out many times.
We clinicians do not always help our cause in the “trust Olympics,” meaning that we are working mightily to gain the confidence of the family members. At one institution, a young man sustained a gunshot wound to his head while playing with a weapon he thought was not loaded. The bullet went across his brain and did devastating damage. He had brain matter leaking out of the side of his head. His aunt was a police detective who’d previously had positive experiences at the hospital. This was a good thing. We declared him brain dead with several tests, and the organ donor network evaluated him. In an extreme outlier, a neurologist who had not discussed the case with the ICU team ran out to tell the family that he had detected some unexplainable reflex twitch and therefore thought the patient was not brain dead. Really. The boy was gone. Fortunately, his family did not react negatively. Imagine if they went to the papers with “Brain dead patient deemed alive.” We would have had every patient’s family whose loved one had been declared brain dead over the past decades suing the hospital for wrongful death.
The moral of the story is that we critical care clinicians are constantly striving to build trust with the families of our catastrophically ill or injured patients. As each family is a unique mystery, there are naturally some significant barriers to securing people’s confidence when it comes to making life-and-death decisions.
Stephen Cohn is a trauma surgeon and author of All Bleeding Stops: Life and Death in the Trauma Unit.