Defining moments: End-of-life care in the back of a truck

Professor of medicine, head of respirology, end-of-life researcher — that's my life as a physician. My last official home visit was nearly 30 years ago. Recently though, I spent a few days as “visiting professor” in a remote rural area, seeing patients with a respiratory therapist connected to the New Brunswick Extra-Mural Program, the “hospital without walls.” I had forgotten, and needed to be reminded, that defining moments in our work sometimes take place when we care for patients in their own space, and on their own terms. And their space does not always mean their home.

Figure. Photo by: Fred Sebastian

Dan had an advanced malignancy, with multiple metastases and lymphedema of his arm, oozing secretions. He was on his fourth course of chemotherapy, and had just started to use oxygen for exertion. Dan was a truck driver who used to drive a 70-foot tractor–trailer all over North America. With obvious emotion in his voice, he told us that his only journeys these days were to medical appointments. Between appointments the “hospital without walls” came to his converted mobile home, where he lived alone. During our first visit, he didn't want to talk about where he was with his cancer, his treatment or his future because, as he said, “Right now no one knows and I've been fighting this for 6 years.” He didn't have the energy to shave or manage his personal care, nor would he allow anyone else to do it for him. We reviewed his symptom control and bandaged his grossly swollen arm.

The following day, as we were returning to the Program offices after some other visits, a powerful pick-up truck pulled up. Dan was the driver. He had been to his oncologist in a distant centre and learned that his cancer was progressing despite chemotherapy. He was offered a bed in their palliative care unit but had left, explaining, “I don't want to die today.” Instead, he decided to drive more than 100 km to his home despite the extreme weather. He then visited the offices of the Extra-Mural Program to pick up some supplies. He wanted and needed to share his news. It was snowing heavily; winds were gusting to 60 km or more. He was too breathless to get out of his truck. Seeing his distress, we climbed in.

Dan was sitting at the wheel. He looked exhausted, both physically and emotionally. He asked us whether he should stop the chemo and we tried to help him with that choice. We talked about the possibility of using a stronger painkiller — he resisted this. Perhaps more transdermal scopolamine would help? He told us he couldn't manage to shave and the patches wouldn't stick. There was a charged atmosphere in that truck.

Then Dan said, “This wasn't quite the news I wanted on Valentine's Day.” The contrast could not have been more stark. Just minutes earlier, we had bought Valentine's Day gifts for our families from a local shop, where there was gaiety, laughter and roses. Now I was forcing back tears, but crying didn't seem like quite the thing to do in the rear seat of another guy's truck. So we talked about the people he would need to tell. We listened and supported. We sat in that truck, the 3 of us, in the driving snow, the engine running, his oxygen supply hissing, talking about how he would get all the help he needed for as long as he needed it. The Extra-Mural Program would keep him at home as long as he wanted, keep him pain-free as best it could and do the best for his symptoms and for him, to the extent that he would allow. Dan would still call the shots.

The severest of winter storms gripped the area that evening and driving to the airport for my return home was impossible, so we went to see Dan again the following morning. Since Dan found it more comfortable to breathe when he lay on his left side, we moved from his living room back to his bedroom, one of us perched on a chair and the other sitting on the bed with Dan. He had decided not to do chemo again that week and to defer decisions about future treatments. As he said, “That's not a decision I need to make today.” He agreed to more medication to help his dyspnea and anxiety. Family support, sadly, seemed somewhat distant. A local carpenter working on his converted trailer home would be able to spend some time with him. A neighbour had moved in for a few hours during last night's storm and power outage.

Here was a proud man, a big man in his day, a Harley Davidson motorcycle he'll never drive again outside, a Harley Davidson hat covering his hair thinned from the chemotherapy. He welcomed us to his home. We were strangers parked in his bedroom, working out with him how he would spend his last weeks and days. He wouldn't be abandoned. He reminded me that real medicine so often plays out away from the big centres, and that we, the specialists, are of little use to a man like Dan until we are able to see how he lives and to respect what he values.

The day after that home visit, Dan was admitted to the local community hospital (one of the other patients we visited called it “The Little Hospital That Could”). He died there just 12 hours later. He didn't die alone. A friend from the local fish and chip shop was with him.

A Senate Report written over 6 years ago was entitled Quality End-of-Life Care: The Right of Every Canadian.1 For Dan, the “hospital without walls” climbed into his truck, and cared, par excellence.