Welcome to the second series of short episodes on the Illusions of Autonomy blog. The Hill describes a ‘difficult’ treatment escalation and Do Not Attempt Cardio-pulmonary Resuscitation (DNACPR) decision. By ‘difficult’, I mean the process of reaching agreement with a patient and family who have not been engaged on the issue before, despite end-stage disease and multiple admissions. A common situation.
I have not presented an extreme example; no outbursts, no legal challenges. The Hill is supposed to be realistic in its complexity and its ambiguities. The effect of prior medical decisions on the psychology of the family is emphasised, and I hope true it is true in its depiction of how loved ones and medical staff can behave. It is an amalgam of the many conversations I have had during my career, but is nevertheless a fiction.
Dr Laura Green knew that Albert Johnson was unlikely to survive. As she entered the cubicle in the emergency department the gestalt was strong… A frail man, poorly nourished, breathless, the spaces between his prominent ribs sucking in and out with every difficult breath. Another exacerbation, the seventh this year according to the summary on his casualty card, but this one was different. His chest x-ray showed a large white patch. Infection, consolidation – pneumonia.
Next to him sat his wife, Mary Johnson, watchful, trained through countless previous admissions to observe the process and take note of who came and went. Laura sensed that something had gone wrong in the past. Some misunderstanding, an instance of poor communication or mis-management. There was a mountain of distrust to overcome here. Laura explained her thoughts as to what should happen. Antibiotics of course, fluids, oxygen, but not too much in case it slowed down his breathing, and then wait… for the response.
Mary began to lean forward. This is it, thought Laura. This is where it went wrong before. The discussion about what to do next. Limits of care. Ceilings.
Having taken a brief history herself, having examined Albert carefully, having considered the background (‘5 steps’, the extent of his severely limited exercise capacity even when ‘well’), Laura had enough information. She had formed her opinion. If the antibiotics did not work quickly, if his breathing deteriorated further, he would not benefit from more intensive treatment. Mask ventilation. Intubation on the ICU, being connected to a machine. No, that wouldn’t be the right thing to do.
It was 11 o’clock at night. Albert was too fatigued to lift his head. His wife, alert but also tired, was the one who Laura would have to engage in this conversation. There were no letters, no forms, no evidence that this difficult conversation had taken place before.
From scratch then.
Laura approached the cubicle. Mary, it seemed, knew it was coming.