I pull up to the house of a patient and family I am about to meet. I often joke that as a home visiting palliative care physician, my car is my mobile office. Purposely, I only buy white cars because my arrival is often seen as an omen. Black cars, especially sedans, feel too much like the hearse has just arrived. Similarly, I never dress in all black when I’m working.
I know that whoever I am about to meet is likely in crisis. I know this because their stories have in common an underlying sense of loss of control and fears about “what is coming.” Most people I meet who have been diagnosed with a progressive life-limiting illness have very little understanding of their illness. They travel blind along their illness journey.
Before I enter the home, I gather as much information as I can from the patient’s medical records. I do my best to understand what they are diagnosed with and when they were given this news. Have they been fighting this illness for years or did they just get diagnosed a few months ago? How “raw” will I find this patient and family? Patients and families loathe having to retell their medical history over and over again to each new clinician. They appreciate that I have done my homework before I meet them.
But, the medical records only go so far in terms of painting the full picture. The detailed medical documentation is technical and essentially void of the ‘soft’ information that will help me understand the person I am about to meet.
Often I don’t know how much the patient and family know about what they are facing. Do they realize this is a non-curable illness? Are their expectations that they will stabilize or improve over time? I know I will need to tread carefully at first, to gauge how best to communicate with this patient and family.
I enter the home and always take off my shoes at the front door. When I was growing up, this was always the expectation in my home. Usually I am met with comments like, “Dr. Winemaker, you don’t have to take those off!”
But I do anyway, to signal that I am a respectful guest in their home. “I’ve brought you your newspaper from the driveway,” I offer.
Immediately, I take note of the interior of the home. Who is this person? Is the home clean, cluttered, full of art, organized, is there evidence of religious symbols or are there pictures of family?
“I’ll follow you,” I say. The family usually escorts me to where the patient is sitting or lying in the home.
“Hello Lilly. My name is Dr. Winemaker. Please call me Samantha. It’s good to meet you.” I offer my first name as a way to humble myself and invite a more relaxed conversational atmosphere instead of a military style assessment.
I start by stating why I have come, “to help make you the best that you can be, given the circumstances.” Who can argue with that? I don’t mention that I am a palliative care doctor. The ‘p’ word is too loaded with emotion and I remind myself that I don’t yet know how much they know. I sit myself close to the patient so that I can give them my full attention. Often I joke that the TV needs to be turned off or I might start watching it! They laugh. The atmosphere softens.
I read their faces, their posture, how still or fidgety they sit or stand. I am aware that they are reading me too. I invite everyone to sit even if we must pull chairs in from the other rooms.
I reassure them that I have read their medical records and have a general sense of their story. I offer to tell them what I know about the nuts and bolts of their illness, but I always ask first, “Is it okay for me to speak openly?” The patient usually says ‘yes’ but I often notice the worried stares from others in the room. I know they are wondering how much I am going to tell.
Moving past this clinical foreplay I muster up the courage to get to the next layer. It must be done. I remind myself that I am there to be helpful and I cannot shy away from the difficult task of moving from sharing the technical details of the illness to untangling the meaning of their medical story for them. I must find permission and the words to confirm for them that their illness is non-curable, progressive and will shorten their life.
I used to worry that it would be at this point in the visit that things would sour. But it never does. The most ironic part of my work is that people typically feel better with realistic information — for better or for worse.
I put my shoes back on, and just before I leave, I am usually treated with a big hug or two. Back in my car, I take a deep breath. Off I go to the next home where I will most likely meet another patient and family who will need to be guided out of the dark.
Dr. Samantha Winemaker is a palliative care physician based in Hamilton. Twitter @Sammywinemaker. Instagram Sammy.winemaker.