Mike Radzienda writes…
In my fourteen years of medical practice, I had written a Do Not Resuscitate (DNR) order based on medical futility once. The patient was terminally ill, comatose, and without next of kin. The DNR order was by concurring physicians. It was not contested, and the patient ultimately died peacefully.
Last week, I wrote my second DNR order based on medical futility. This time was not so simple.
The patient was an elderly gentleman with end stage Parkinson’s disease, B-cell lymphoma, dementia, coronary artery disease, congestive heart failure, severe aortic stenosis, sequelae of traumatic brain injury, chronic respiratory failure, tracheostomy, anemia, thrombocytopenia, multidrug resistant- polymicrobial-ventilator associated pneumonia, stage three ischial decubiti, sarcopenia, and a complete small bowel obstruction.
He was transferred to my service after a ten-day stay in our surgical intensive care unit. Two months prior, after a protracted hospitalization for congestive heart failure, his physicians recommended hospice care. His family declined. So they flew him to Europe where he underwent a novel bio-prosthetic valve replacement procedure complicated by pneumonia and failure to wean from mechanical ventilation. After five weeks in the ICU, he was flown back to the US directly to my institution. He was “successfully weaned” from the ventilator, “trached,” “G-tubed,” and sent to my team for “further management.”
At the bedside, we were all gowned, gloved, and masked to prevent spreading the MRSA, Pseudomonas, and Stenotrophomonas maltophilia being expelled from my patient’s tracheostomy. With his G-tube to wall suction draining copious bile, a central venous catheter for parenteral nutrition, the intern reported the latest set of labs, “His bicarb is quite stable.”
The resident nodded in agreement. I ducked to avoid the green globule propelled towards me from my patient’s tracheostomy. Then, while examining my patient’s rigor mortis-like rigidity, I noticed a small patch on his chest containing the word Neupro.
“What is this for?” I asked the medical student.
“That is the anti-Parkinson drug the patient received in Europe. It is off the market in the US, so the family has been using their supply they received in the EU.”
“I see. Is Neurology on board with that?”
“No,” answered the resident.
As I observed my patient’s contorted, masked face, eyes wide open without a blink, I mumbled, “Doesn’t seem to help, huh?”
At the end of the medical student’s detailed presentation, I queried him about the patient’s advanced directives and code status.
“Full code,” he answered with a pause. “Oh, I forgot to mention the ethics consult.”
And so it began.
We soon convened an interdisciplinary conference and invited my patient’s family. His wife, daughter and son attended. His wife was the Power of Attorney for Healthcare, however, she deferred all decisions to her children saying, “They are in the medical field and knew better.”
The son introduced himself as Doctor. He had earned a PhD in chemistry and was the CEO of a longevity-product corporation. He was a longevity scientist and his sister was a dietician.
The providers reported the status of my patient’s medical problems. We told the family he was dying. We gave the family the opportunity to ask questions.
“When are you going to fix the bowel obstruction?” said the son.
The surgeon described all the reasons why he was not going to operate.
“Why aren’t you walking him in the hallway? He needs to move,” said the daughter.
“The European doctors had a much more aggressive approach than you,” said the son.
There were many uncomfortable pauses.
“We demand that everything be done for the patient,” barked the son, with clenched fist and furrowed brow.
My dying patient was in the midst of a struggle of which he had no knowledge and no control. My patient’s deferential wife, his agent, never once opined on her husband’s pre-morbid wishes. When asked what my patient would have wanted, the son interjected, “Last night when I was speaking to my father, I asked him if he wanted to be frozen for cryogenic preservation and he said yes!”
Deafening silence followed.
We then recommended hospice, comfort care and a DNR order. They declined our recommendation. We informed the family that my patient would have a DNR order in place due to medical futility. The next day, under the advisement of a bioethicist and against his family’s wishes, I signed a DNR order with another concurring physician.
Over the next two weeks, my patient lay there, maintained with parenteral nutrition, gut decompression, and pulmonary toilet. He exhibited pain by grimacing, tachypnea, and tachycardia. We gave morphine as needed. The patient’s son vehemently objected to our use of morphine for the treatment of his father’s pain. The family filed a complaint against us with the district attorney. The son was witnessed removing the scopolamine patch we had placed on his father. He badgered the nurses to not administer treatments aimed at relieving the patient’s suffering. When I instructed the staff to remove the Neupro patch he insisted it be replaced as it was “helping his father recover.”
The family repeatedly applied the patch without a physician’s order.
Finally, the highest levels of hospital administration intervened and enacted a policy restricting the family’s visitation rights. It was determined that the family was not acting in the patient’s best interest and posed a risk to his safety. The family was actually escorted off the premises by our security staff. After discussion with the ethics committee, we pursued guardianship for the patient.
During the two weeks I attended to my patient, I devoted over sixty hours to his management and coordination of care. I was threatened with law suits and physical violence. I was called into multiple meetings with legal counsel, risk management, and administration. The nurses, consultants, administrators, and others involved were taxed above and beyond their wildest expectations. I was even asked to comply with the son’s order to stop treating my patient’s pain because the situation was so litigious. I would not.
During this most unusual episode my patient suffered, his family suffered, and his providers suffered. Even though I believe in a blame free culture that promotes safety through transparency, I wish there were someone to blame for this. Would someone remunerate us emotionally and financially for the undue suffering? I am resigned that there is no one to blame. Our dilemma is a result of our broken system of healthcare delivery. All this suffering because our healthcare system has failed to prioritize advanced care planning.
The $18 payment to my patient’s primary care physician for advance care counseling would have been well worth it.