Immortalization: Placement of a Percutaneous Endoscopic Gastrostomy Tube and Tracheostomy in a Neurologically Devastated Patient

On a Monday morning during the late summer of my second year of residency, I received a consultation request for placement of a percutaneous endoscopic gastrostomy (PEG) tube and tracheostomy (trach) in a 20–year–old male who suffered a near drowning. This unfortunate young man, SB, had been out in a paddleboat, fallen off, and was submerged underwater for about twenty minutes. He was eventually rescued from the water by an off–duty police officer and underwent six minutes of CPR after which he had return of spontaneous circulation. He was intubated in the field for respiratory failure, and transferred to our facility for further management. He was found to have extensive anoxic brain injury complicated by several brain infarcts. He had lost his gag, corneal and cough reflexes, but was initiating breaths on the ventilator, meaning that he did have brainstem function and was, therefore, not brain dead.

At the time I was consulted, SB was almost two weeks into his hospitalization. He had not regained any further neurologic function and had deteriorated significantly from pond water pneumonitis. The palliative care team had been consulted two days before to assist in discussions with the family regarding goals of care given this patient’s dismal neurologic prognosis. In their initial discussion with palliative care, SB’s parents expressed the sentiment that “every opportunity for recovery should be provided.” This is what eventuated the emergency general surgery (EGS) consult. In order to continue moving forward with this patient’s care, he would need a permanent airway and feeding access.

Two days after the EGS consultation, it was not clear where the trajectory of SB’s care was headed. Palliative care again met with his parents. He mother stated that she could “never make the decision to stop treatment.” She further said that she was supposed to die before her son and could not live without him. That sentiment solidified the family’s decision to want to move forward with a PEG and trach.

From a timing perspective, a trach was more pressing then a PEG because SB had been on a ventilator for two weeks. Therefore, a trach was placed the following day. The patient was quickly weaned from the ventilator to trach collar. The family was happy that he was breathing on his own, but this happiness soon faded when they saw that his neurologic function had not changed. At that point, the palliative care team asked SB’s family what what they would want to do if he were to need ventilator support again. The parents agreed that this would be a step backwards in his recovery and they would not want this to be done, so a do not intubate (DNI) order was placed.

That day another important theme entered into the conversation with palliative care. One of SB’s friends had died in a car wreck a month earlier. He told his brother at that time that it was a “blessing” that his friend died quickly and did not suffer. The family kept thinking about this conversation and they noted several times that SB would not want his life prolonged. However, they ended the conversation with a desire to move forward with PEG placement as they knew that he would need it long term.

About a week after trach placement, the EGS team was then asked to reevaluate SB for PEG placement as the family wanted to get him home and be able to care for him there. While a PEG tube was technically feasible, a few members of the team, including myself, had reservations about going forward with this procedure because of the implications that it had for SB’s long–term survival given his dismal neurologic prognosis. We felt as though we would be merely prolonging SB’s existence and his family’s suffering without providing any therapeutic benefit. After a discussion with the palliative care team, the EGS attending decided that it would be reasonable to do this procedure because the family wanted to get the patient home, and this would help accomplish that goal.

SB was discharged four days after PEG placement. His mother was “proud” of being able to care for him, and pledged to do so for “as long as he needs.” I followed along with his progress over the next several months. He did not regain further neurologic function. He did, however, develop several infections from pneumonia to clostridium difficile colitis. He eventually died at home from one of his infections.

Reflections

This case demonstrated to me the complexity of decision making when a tragic injury happens to a young, otherwise healthy person. These situations are devastating to families because they are unexpected and often unfixable. As this case unfolded, several interventions were offered that would increase the quantity but have no effect on the quality of the SB’s life. I knew that this patient would not regain meaningful function, that he would be dependent on others for the rest of his life, and that he would eventually die from an infection or blood clot given his functional status. I was also told that this patient would not want to exist in his current state. However, rather than working with his family to help them accept the situation and implement SB’s wishes, the medical providers continued to offer therapeutic interventions that led us down a treatment rather than palliative pathway. I would like to focus on how we could have done a better job in changing the conversations with SB’s family to help them navigate this devastating situation in a way that was consistent with SB’s wishes

“Every opportunity for recovery should be provided”

In their first interaction with palliative care, SB’s family was of the mindset that everything should be done to aid with his recovery. In discussing goals of care, the family’s goal was clearly for SB to recover. This was a rather nebulous goal. In order to further the discussion at that meeting, there should have been more investigation into what the family felt an adequate or “good” recovery would look like. Were they expecting him to return to how he was prior to the accident? Or, would they accept minor improvements in neurologic function as adequate recovery (e.g., regaining brainstem reflexes)? I think that a discussion of the family’s vision of recovery at this point in his hospitalization would have set the tone not only for possible reassessment of expectations but also for the trajectory for his management. It would have given us a better framework for future conversations.

The mother could “never make the decision to stop treatment”

The next conversation with the palliative care service was in some ways opposite to the initial discussion in that rather than giving SB an opportunity to recover, the family was now unable to make a decision to stop interventions. They were relating the sentiment that maybe he would not recover, but they did not want to be in the position to make the decision to stop treating him. This is a common progression among family members when faced with decisions like the ones in this case. No one ever wants to make a decision to stop treatment. No one wants for their loved one to die. When the family opened up the conversation to the fact that they did not want to make the decision to stop treatment, there was an opportunity for the palliative care team to discuss limiting additional interventions as well as putting time limits on the current treatments.

“A good death”

In conversations with palliative care after SB’s trach, the family brought up the patient’s perception of a good death. He had described the death of his friend as good because he died quickly without suffering. The family was sure that SB would not want to continue in the state that he was in. However, they were now on a therapeutic trajectory that would allow him to continue to live, and possibly even go home. While there was near certainty about what the patient would want done, the family could not bring themselves to do this. When there is a disconnect between the decisions that are being made about a patient and his known preferences, I believe that it is the job of the medical team to push the conversation to be about the patient’s wishes as the ultimate driver of decision making. This was not done and the conversation ultimately put the family’s preference to continue forward with interventions above SB’s preferences. I think that this conversation should have focused on the question of how to care for SB given his perception of a good death as quick and without suffering rather than on the family’s desire to move forward with aggressive interventions.

Reservations of the surgical team

At this point in the case, the surgical team was brought back in as consultants for PEG placement. We had not been part of the ongoing discussions between the family, the MICU team, and the palliative care team. However, the decision was ultimately made between these parties to proceed with PEG placement. There was disagreement among members of the EGS team as to our role in this case. Were we technicians or consultants? I think that we should always function as consultants to make thoughtful decisions about patients but others on my team were of the opposite mindset that the decision to do a PEG was already made and we just had to execute the procedure.

My bias is that when a surgeon intervenes on a patient, it is essential that he or she is doing so for a medically indicated reason and with a mutual understanding of the risks, benefits and alternatives. One thing that I could have done better in this case is insist that the surgical team was involved in the palliative care discussions throughout SB’s hospitalization. This would have allowed us to have a seat at the table when it came to detailed discussions regarding PEG placement. So, rather than questioning a decision that was made after weeks of discussions, we could have been part of the conversations that led to this decision.

Who did we do this for?

At the end of many discussions among the EGS, MICU and palliative care team, we did place a PEG tube. It ultimately came down to the family’s inability to make the decision to stop aggressive interventions and let SB die. One of the themes that arose late in the palliative care discussions is that the PEG and trach would enable the family to bring SB home and care for him there. The ability to do this was a source of pride for his mother who felt that in some way she was regaining control of the situation. Although he did make it home, SB never made a neurologic recovery. He remained completely dependent on his family for care and he ultimately died of an infection. I believe that pushing for SB’s continued survival was more in line with the family’s inability to let him die rather then a reflection of what he would have wanted done. After SB had these procedures done and had left the hospital, I could not help but think that we did all of this to SB for his family and not for him.

Lessons learned

I cannot comment on what the quality of his or his family’s life was during the months that SB had at home. It must have been a trying time to watch SB exist as a person without any meaningful interaction with those around him. I often wonder if, in hindsight, the family would have made the same decisions. We allowed them to push forward with interventions, despite both our and their reservations. There were several opportunities to allow them to make the decision to change the trajectory of SB’s care to a focus on comfort and a good death, which from all indicators would have been his choice.

I still question the utility of placing the trach and PEG tube in this patient. I am not sure that it was the right thing to do and I am quite sure that I would not do it again if given the choice. One of my co–residents describes trach and PEG procedures as “immortalizing patients”. And, in this case, it is a good description. We suspended this patient in a state of neurologic devastation for months, knowing that he would not have a meaningful recovery. We allowed his family to slowly suffer through the concomitant grief of losing a loved one and having to care for a completely dependent individual. Rather then being remembered as the vibrant 20 year old that he was prior to the accident, he would be remembered in his neurologically devastated, dependent state. In some ways, I feel that in offering the interventions that we did, we deprived him of the one thing we could have provided in this tragic situation: a good death.