Notes on listening.

The longest visit I do, on most weeks, is a bedside visit at the home of a member who is in the last weeks. The visit is unbillable in any framework that bills primary care; the visit is, by every internal measure of the practice, the visit that justifies the practice. I want to write about what happens in those visits, because the public conception of end-of-life primary care is mostly populated by the dramatic interventions — the morphine doses, the conversations about ventilators, the moment of decision — and the visits I sit through are mostly not those.

The visit is, mostly, listening. Not the corporate-empathy kind of listening that arrives in a five-day continuing-education course. The mechanical kind. The patient says something, and I do not say something. The patient says something else, and I do not say something else. The patient says a third thing, often at a much greater length than the previous two, and I let them. By the third thing the patient is saying what they actually wanted to say at the start, and the start was a warm-up, and they needed the warm-up because the thing they wanted to say is hard to say.

The seven-minute visit cannot do this work. The seven-minute visit cannot afford the warm-up. The seven-minute visit cuts off the warm-up at the second sentence and tries to extract the chief complaint, because the chief complaint is what the templated note needs and the templated note is what the institution needs. The chief complaint is, often, not what the visit is about.

A typical visit

A typical visit at this stage of a member's care looks like this. I knock; the member's spouse or partner answers; I take off my boots in the entryway because Duluth's snow does not stay outside on its own. I sit in a chair that is the same height as the bed. I put my coat over the back of the chair, but slowly, so the act of taking it off doesn't become the start of the visit. I ask how the night was. The answer takes ten or twenty minutes, partly because most of what nights are at the end of life is also hard to say.

Somewhere in the middle, I do the small clinical work. I look at the medication list. I check the schedule of doses. I ask about pain on the 0–10 scale and about which intervention was used most recently. I look at the legs and the heels for pressure injury. I look at the breathing rate. I write a couple of lines in the note. The note is not the visit; the visit is the visit.

Toward the end, I will sometimes ask a question that is not a clinical question. I have asked, more than once, "what would you like the room to feel like in the next week?" The answers I have received include "less professional"; "with less light at night, but more in the morning"; "as quiet as possible"; "with the dog on the bed"; and "with a window open, even when it's cold." These are not clinical questions. They are also the most important things that have happened in some of those visits.

What I do not do

I do not, in those visits, perform certainty I do not have. I do not promise a date. I do not promise that the death will be peaceful, because the death may not be peaceful and the promise has a way of returning later as a grievance. I do not promise that I will be there at the moment, because I cannot guarantee my schedule against the timing of dying. I do tell the family I will come on the day. I have, for every member I have seen at this stage, kept that promise.

I do not bring the laptop into the room. The chart can be updated from the kitchen at the end of the visit, or from the car. The laptop in the room turns the visit into a clinical encounter rather than a sitting-with, and the sitting-with is the work.

I do not try to fix things that are not fixable. The early career version of me wanted, very badly, to make the death easier than it was going to be. The current version of me has accepted that easier-than-it-is-going-to-be is not always available, and that the version of "easier" that is always available is the presence of someone whose job it was, in the years before, to know the patient. The presence is the work. The clinical work that happens during the presence — the pain assessment, the medication review, the bowel-and-bladder check — is real, and the presence is more.

After

After a death, the practice sends a handwritten card. The card is one of the parts of the practice I am most particular about. The cards are written by the clinician of record, by hand, with a fountain pen, on stationery printed in West Duluth at the Duluth Stationery Company on East Superior. The cards are not a marketing exercise. They are addressed to the spouse or the surviving family member; they name something specific about the member who has died (a story they told in a visit, the dog's name, a line they used about the lake); they do not contain the words "deepest sympathies" because we have decided, as a practice, that the phrase has been worn out.

I write between two and four of these cards a year. I keep a list of them in the kitchen drawer at home. I remember every member on the list.

Why this is in the transcripts

I am not writing this transcript to argue that primary care should universally do home visits at the end of life. The math of doing so does not work for most primary-care practices, and for the practices for which it does work, the math is fragile. I am writing this transcript to be on record about what the time we have at this practice — the time bought by the membership model and the small panel cap — is for. The time is not for itself. The time is so we can do the visits that take the time the visits take. The end-of-life visit is the visit that takes the most time, by a wide margin, and is also the visit at which a practice's character is most visible. I would like to be the kind of clinic where the time is for the visit. I am trying to keep being that kind of clinic.

— EM