Mr. Jones was 83-years-old when he died. He came to us by ambulance from with shortness of breath beginning a little after lunch. He was from a nursing home; he had the alphabet soup of morbidities: CHF, CVA, NIDDM, CAD, COPD — topped off by dementia related Parkinson’s.
He had pancreatic cancer, and plainly, he was dying. His advanced directives, outlining the plan for end-of-life care stated no heroic measures, but if he became seriously ill, he was to be transported to the emergency department for evaluation.
The nursing home where he lived did just that. He went through the usual emergency department process — seen, treatment started and referred to the internist for admission — all the while obtunded and gasping for air, despite the high flow oxygen. He was a tall man, broad-shouldered; he lay restless in the narrow emergency department stretcher, his gnarled feet hanging over the end.
A flood of patients had deluged the hospital. There were no beds upstairs. I talked with Bed Flow and we made Mr. Jones a priority for a bed. But somehow his criteria never met bed availability, and when I came back two days later, he was still in the Observation room — and still no room on the floors. I had Housekeeping look for a regular hospital bed for him. There were already three being used in the department, and the overflow of admitted patients meant there were none to spare. The Obs room nurses provided comfort measures, did mouth care, applied barrier cream over bony prominences, repositioned every two hours. They did what they could, but in truth, they were not palliative care nurses, a unique speciality unto itself. He never opened his eyes and he died by inches. Mr. Jones finally went three days after admission. His feet were still hanging over the end as we packed him away in the body bag and sent him to the morgue.
For the nurses, who knew what care Mr. Jones deserved, the experience was distressing. For the family, it was devastating, a layer of suffering over grief. For the patient himself, we can only hope he knew little and felt less.
There is absolutely no space in the system for patients like Mr. Jones — elderly, debilitated and often requiring complex amounts of care — to die with dignity. Nursing homes, despite their demographics, are very poorly equipped and frankly don’t have the resources to deal with dying patients. They dislike having dying patients; they will send them to the emergency department even when the advanced directives explicitly state the patient is not to be transported. Emergency departments are similarly not geared for end-of-life care, even though death is something we deal with frequently. We have neither equipment nor expertise; we don’t even have ready access to expertise.
And yet the case of Mr. Jones is not exceptional. How can we ensure people can die comfortably and with dignity? It’s a problem, I think, without at quick fix, but is by no means intractable or even complicated. It means explicitly recognizing that for the majority of cases, the best place to die is not in hospital, but at home or under nursing care in the community, and providing the resources to make it possible. And if such patients must come to ED, giving us the tools to do our jobs properly, so we can provide safe, competent and ethical care. That would be a good start, and a necessary one.
Because all I can think, that might be me one day. Or you.