The dilemma for the critical-care team was not uncommon: An elderly patient with a life-threatening illness and in severe pain, not understanding the nature of his situation. A decision needing to be made about how aggressive to be. A doctor trying to convince the patient to pursue a rational approach, one based on understanding the limits and capabilities of life-supporting interventions.
This situation plays out in emergency rooms and intensive care units hundreds of times a day. But two factors made this incident unique. First, this patient — struggling to breathe, battling low blood pressure and in tremendous pain — was my wife’s grandfather. Second, the doctor recommending aggressive measures, contrary to the patient’s advance directives, was I.
Herb Lee, a healthy, independent 87-year-old, had gone out to dinner. Something must have been wrong with the food because he vomited all night long. In the emergency room the next morning, doctors diagnosed him with severe shock and kidney failure from severe pneumonia. (He had aspirated some material into his lung.) His breathing was labored, his oxygen was low and his pulse was fast and weak. But Herb was unable to process any of this. Sciatica pain down his lower back and leg had become excruciating from lying on a hospital gurney, and the only thing he wanted was pain medicine. And he wanted it now. But none was forthcoming, given his tenuous blood pressure and marginal breathing.
Before this, Herb had been clear about treatment if he ended up in a hospital. After watching his wife battle metastatic cancer years ago, he knew what he did and did not want: No life support. No breathing machines.
This left Herb and his doctors in a bind. The medical team at the ER wanted to treat Herb’s pneumonia and sepsis. But antibiotics take time, often 48 hours, before they have an effect, and patients often get worse before they get better. The pain medication he was desperately calling for was out of the question, as it would further lower his blood pressure and impair his breathing
The medical team was failing Herb on all fronts. Not only were they not giving him the best chance to survive, but allowing him to continue on in significant pain while struggling to breathe was unacceptable. He was in no condition to make complex life-or-death decisions.
So my wife’s family looked to me, a young internist in the second year of specialized pulmonary and critical care training, and a moonlighter in that same ICU, to help make decisions.
What do you do when you disagree medically with a patient on matters of life and death? When there is no ability to have a thoughtful, patient, nuanced conversation over life support? For Herb, was it a “hard no” to any intubation? Were two days okay if there was a high likelihood of recovery? Or was even one day too much?
When doctors disagree with patients and families, it is usually the family choosing aggressive care in the face of overwhelming illness even though the benefits of life support are negligible or nonexistent. It gives a reprieve of sorts, allowing for further discussion. But what if it’s the reverse? What if the patient’s decision for no intervention leads to a potentially premature or unnecessary death from a treatable illness? What if a patient’s limits were stated without ever considering the current context? And what if this is your own family member writhing in pain, struggling to breathe?
We often talk about decisions of life and death, of aggressive care or comfort, of full “code” — do everything possible — vs. do not resuscitate/do not insert a breathing tube. One or the other. Binary options. But in real life, applying these decisions can get messy. There is nuance and context and uncertainty.
And what happens when, in these shades of gray, in this fog, you disagree with your patient? What if you are a knowledgeable critical-care doctor, and it’s your family member? If you choose to treat, you take away his autonomy and right of determination. If you choose to limit care, you are choosing an irreversible path to death and a future full of what-ifs. What do you choose when you are in the fog?
With Herb, I chose to treat, not to limit. I chose paternalism over autonomy. I chose a time-limited trial of life support over a morphine drip. I chose not to be the grandson-in-law who made the last decision leading to Herb’s death. He had pneumonia. As a doctor, I knew it was treatable. Reversible. Curable.
And so a breathing tube was placed. Once his breathing and blood pressure were stabilized, morphine was administered to treat his pain. We bought some time to allow antibiotics and his immune system to turn the tide on his pneumonia and sepsis. At 48 hours he made enough progress to push forward another day. The breathing tube was removed 24 hours later, and he was able to leave the ICU shortly thereafter. He avoided most if not all of the potential complications and pitfalls that often plague patients in the ICU. A week on the regular medical floor was followed by a transfer to a nursing facility. Within six weeks, Herb was back home.
In my world of critical care, this is a win. It does not get much better than halting the progress of a life-threatening illness, supporting the body while it heals and nursing the patient through a hospitalization to an ultimate return home.
Over the following months, Herb would see another great-grandchild born and celebrate family birthdays. And at one of those dinners, sitting next to Herb, I took the opportunity to finally ask:
“Herb, I made the right choice, right? Overriding your ‘do not resuscitate’ order?”
He looked at me and simply said, “I wouldn’t want to go through that again.”
He told me of the countless sleepless nights, lying in the bed, scared, confused, not knowing when light would finally come to end his darkness. It was hell, and not one he wanted repeated. If he could do it over again, he said, it would be no. No breathing tube. No life support.
I was shaken. What does it mean when an unequivocal win in my world is not a win in the eyes of the person for whom it matters most?
The intersection of critical illness, advance directives and end-of-life decisions is an uncomfortable place. It is hard to talk about these issues when in good health, much less in sickness. But we must run toward — and throw ourselves into — the discomfort. We need to talk to our family and friends and share what it is that makes life worth living — and when it’s not. We need to explore what “quality of life” means for each of us. By doing so, we inject some much-needed light into the darkness and the fog, and help bring claritywhen it’s needed most.
A few months later, Herb developed another severe pneumonia. There were no tense conversations, no anxious looks among family. There was light where before it had been dark. And as we focused on Herb’s comfort, that light remained. He died a few days later in the hospital, with the palliative assistance of hospice.
It has been more than 13 years since Herb passed away. Over that time, I have been involved in countless frantic discussions with patients and their families about goals of care in the midst of critical illness. It’s never easy, but because families often ask me what to do, I share with them Herb’s story. And by doing so, he continues to help shed light when it’s needed most and to help determine what a “win” means for each of us.
Topin blogs about life and medicine at Balance. Twitter: @jtopin1.