Where to sit?

Sean O’Mahony, a palliative care doctor,
with a patient, Deborah Migliore, in the Bronx. 

Photo - James Estrin/The New York Times

I came across the piece accompanying this photo in a recent issue of the New York Times. It's titled, "At the End, Offering Not a Cure but Comfort." It's the third in the series, "Months to Live." The first, "Fighting for a Last Chance at Life," appeared in May. The second, "Sisters Face Death With Dignity and Reverence," was published in July. (free registration required for access)

I highly recommend each one, and look forward to future installments.

I was most struck, however, by this reader comment:

I don't know if the picture at the top of the first page of the article was posed but one thing struck me. The medical personnel are on one side in opposition to the patient. It really made me feel the distance they were maintaining from the patient they were trying to help. Someone could move to sit beside her and perhaps the group dynamics would change and the information exchange would be enhanced. These seem like very caring team members, but little things can make a big difference....

It's an astute observation, and prompts a story of my own -

I once took over the care of a patient who was less than 30 years old, after a colleague who was working 7am-3pm left for the day. I've always worked 7am-7pm, and so was going to be with this patient for 4 hours. I had not previously cared for the patient or met any of the patient's family or other visitors.

The patient had experienced prolonged global cerebral anoxia the prior week, and was now suffering from the complication of profound autonomic dysfunction.

While the patient still had some brainstem activity, the overall prognosis was extremely grim, and had been from the beginning.

The patient's parents were divorced, but both had maintained an active presense. An older sibling was also closely involved in directing decisions on the patient's behalf.

A few days after the patient had been admitted, one parent and the sibling had advocated against a tracheostomy (trach) and percutaneous enterogastric (PEG) feeding tube for longer-term respiratory and nutritional support, saying that the patient would not have wanted to be kept alive under such circumstances.

The other parent held out some hope, and wanted to give the patient a chance for recovery, so the decision had been made to proceed with the trach and PEG.

The three family members had also agreed to revisit the patient's goals for care after one week, and that time had now arrived. The hospital's palliative care team had been consulted, and was going to meet with the family later that afternoon.

The parent who had held out the most hope was in the room when I took over, accompanied by a supportive sibling. They both sat to one side of the bed.

The attending physician and fellow from the palliative care team arrived at about the same time I did. I joined them as they entered the room to introduce themselves.

The parent wanted to wait until the patient's older sibling arrived before beginning any discussion, and anticipated that it would be at least another hour. The parent's demeanor was very guarded, almost angry. The two physicians gave me their pager numbers, and as they left I agreed to contact them when the sibling arrived.

There were now four of us in the room - the patient, the parent, the parent's own supportive sibling, and me. It was suddenly very still and quiet. I was the only one standing.

I felt a sob well up in my chest. I don't know why, exactly - maybe it was because the patient was not much older than my own two children, or because the parent looked so sad and lost.

I managed to stifle the worst of the sob, but it was all I could do to look at the parent's tear-filled eyes and simply choke out, "I'm so, so sorry."

I really meant it. There was nothing else that I could do or say. The parent nodded.

Then I squatted down besides the parent's chair. There was no other place for me to sit. We were all now looking in the same direction, towards the patient lying just above the level of our eyes in the bed several feet away.

A minute or two passed without a word, then the parent started to talk.

There's much more to the story, certainly. But the point I wanted to make, the point that was prompted by the reader comment, was simply that sometimes it's so important to sit next to somebody in order to actually be with them.

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