Death is a matter of fact and a matter of life that we accept will be part of our career. I do like to say the greatest risk factor for dying is living. It’s got a 100% risk, if you will. It comes up for all of us, at some point in our academic and future career, in some form or other. Even if you are going into dermatology (I joke, I joke).
But in some ways, at least for me, I never processed how personal an impending death can be. Sure, I can chant the mantra of ‘You can’t save everyone’, and I can read all I like about fatal complications of end stage diseases. I can even be in the CCU and watch and record the vitals of a patient in their final days, knowing that they won’t be here when I come in again next week for a placement. It’s death, but it’s been dissociated for me from the rest of the patient; the suffering of the family, the necessary – mundane even – arrangements that must be made.
During my home visit with a community health nurse I got smacked in the face by a reminder of the person inside the patient. He had a name, a home, a family he was leaving and a life that he wasn’t quite finished with. It reminded me of our own mortality.
This patient, let’s give him a name. Let’s call him John. He is John and his wife is Jane.
John and Jane have a lovely detached house up on the mountain. It’s in one of those picturesque snowy suburbs, with a big bay window overlooking a quiet street. They have a sitting room with mismatched Ikea furniture. We leave our shoes by the door and go directly to John, who has fallen off the bed and is too frail to get up. Jane isn’t strong enough to lift him back onto the bed by herself.
In the office and adjoining kitchen/dining area is the same wok my parents have under their cupboards. It’s drying on a dish rack. I can see the blackened bottom from countless dishes cooked on the stove. It’s oddly unsettling to consider that, not two days ago, John and Jane were still cooking and eating dinner together. I wonder what the last meal they ate together was. John’s condition came on so suddenly and so severely that he lost almost all basic functions within a day. You could be having a chicken and peppers stir – fry the night before with your partner, and wake up the next morning unable to stand by yourself, unable to even climb back into bed when you’ve fallen out of it.
But I digress. We help to lift John back into his bed and Jane covers him again with a towel blanket. I remember being covered by those blankets in hot summer nights, being told that ‘cold air is bad for you!’. I wonder if that’s the same belief here, as I’m about to roast in my suit. When I look up from propping John up on pillows, I see a bookshelf filled with the same books my parents have. The exact same mechanical physics textbook published before I was born, and probably heavier than when I was born, too. The same dictionary, circa Chinese bookstores in early 2000s.
I’d like to pause here and say I wish it didn’t take until a person so unsettling-ly familiar for their death to really sink in, but it did. In the identical books, the familiar wok, the ubiquitous mugs (because you should only drink hot water, even if it’s 100 degrees), the vividly red Chinese knot ornament hung randomly on the same Canadian Tire lamp I have beside my couch, the plastic cover still covering the computer screen (despite peeling with age and use), the towel blankets, their son’s bachelors diploma, proudly displayed as the focal point of the room, the old (you know the type, the off white colour that looks perpetually dirty) microwave that clashed with the stainless steel of the sink and fridge, the rubber slippers on their feet, the every detail of every corner everywhere I looked. It all so reminded me of my own parents, the same age as John and Jane. If not my parents then the parents of my friends, whose houses I know as well as my own. If not even them the hundreds of other families I can picture in the same position, with the same habits and the same old furniture that they drag from house to house, never replacing despite their humble (and cheap) origins.
John had a prognosis of 0-3 months. The nurse told us after he was degenerating very quickly. I think about Jane in the office with the two matching chairs, side by side with matching laptops. Jane is taking compassionate leave to care for her husband in his final days, but her work requires proof. Proof of what, that she’s losing her life partner? The amount of paperwork surrounding death and dying is surprisingly numerous. I think paperwork would be the last thing I want to do. It’s already the last thing I want to do while I’m living, let alone dying.
John needs home support, he really needs palliative care, but did you know it actually costs money? More money than John and Jane can afford, for the place the nurse can get them into fastest. The place they could afford, well, the waiting list was longer than John had.
I glance at John, who’s lying listlessly in the bed and staring at the ceiling. I consider what it would be like to be lying in my living room, too weak to move and to know that the nondescript white ceiling might be the last thing I ever see.
We learn that John and Jane haven’t disclosed this disease progression to their son, away at school or work. I wonder what it would be like for him to come home one weekend to see his parents, and only see one parent. To not even have the chance to say goodbye. I know my own parents would consider pulling something like that, because they don’t want to distract me while I’m in school. In that manner I’ve already missed a grandparent’s passing.
Throughout the appointment, I keep reflecting to my parents, and then of everyone else in my usual acquaintance circle. I think about them in this position, picture them wasting away in their own home.
By the time we leave an hour later I’ve gathered enough information and construed enough of my own reality into it (transference and countertransference alert?). There are facts like they are immigrants, their age, their professions, then there are construed thoughts. They’ve probably just sent their son off, judging from the graduating date on the diploma. For a lot of parents, this is when they finally start to live for themselves, put their interest and comfort first for the first time in many years. In that way I’ve strewed in our constant ‘living for the future’ status, where we dream of life after residency as established physicians.
I don’t have a concluding life lesson for you, and I certainly wouldn’t call this an ideal clinical encounter. In fact, at one point I accidentally pulled John’s catheter bag loose, causing the contents to spill on the hardwood floor. I just wanted to share the experience that personalized palliative care and death for me. Maybe what I’m trying to say is enjoy the present for as long as you have it, because you might lose it just when you think you have everything. Or maybe I’m trying to say you should buy that expensive treat for yourself on the LOC.
Or we’ll just say community health nurses are virtually angels who do incredible work and I can’t imagine how some patients would get along without them, and that this was probably the most successful IPE event I’ve attended. Do your home visits.