“Why do you ask that?”
“Why are you all staring at me?”
“What do you want me to say?”
“Are you trying to team up against me?”
“Are you here to interrogate me?”
He did not know us, did not trust us, he looked at us suspiciously. He had been fobbed off by the other doctors, over months. He had presented to hospital a number of times with back pain but had left each time feeling totally disregarded. Institutional racism and inequity led to unfortunately common inaction. He felt treated as if he was, “a lazy Maori trying to skive off work.” He had always worked hard, his whole life. He was proud of having always supported his family well. Just as he had experienced his entire life, they didn’t try to know him at all and made the usual assumptions. Research tells of differential treatment that is still leading to Maori people in general dying seven years earlier than the rest of Aotearoa/New Zealand’s population.
In his own real-life example, no-one believed him. He kept on going back with more pain until he finally convinced someone to do a scan. When they found metastatic bone disease in his back, he was not surprised and he reacted with righteous anger. For months he had been disrespected, judged and treated like a nuisance child.
He remained wary of us, in the hospice inpatient unit, until we demonstrated that we would really listen to his needs. He stayed on guard for the first three days, as he was still worried that we would turn out to be like the other doctors. We calmed down his pain, and he slowly allowed us into his world, he started to trust us. Once he was comfortable we were able to discharge him home to his partner.
Weeks later he was back, in severe pain again and acting strangely, his cancer was worsening rapidly. We adjusted his medications and soon the man that we knew returned from the fog. He was able to relax with us and revealed that he wanted to marry his missus. They had been together almost thirty years, had children, and were proud grandparents. We helped the happy couple with some of the arrangements and one afternoon he went out on leave for their home wedding. Marriage day five would be his Oncology appointment, with the possibility of treatment being offered.
From experience we thought that he only had limited time left, and that he really had to choose how to use his time carefully. We were worried that the proposed treatment might not be of benefit, but could make him worse. He had fought hard to win access to any treatment at all, so when it was finally offered he wanted to take the opportunity. In his made up mind, a small likelihood of benefit was better than none at all. He wanted a chance to stay alive, for his family, he still had so much to live for. He was not at all ready to die.
He left us for the clinic, and up having his cancer treatments in the hospital. Things did not go well for him, and a fortnight later we re-admitted him for the final time. He remained confused and increasingly unwell, never really fully surfacing ever again. The closest he came was during a family meeting that we held in his room.
He looked to have been asleep throughout the conversation, as we discussed how unwell he was, that he was dying, and that we would try to keep him calm and comfortable. When his little grandson came into the room, staff and family members alike were amazed when he sat up. He put his arms out to cuddle the baby, and then spoke to the little boy in baby talk. Only the next generation was strong enough to pull him back, if only briefly.
He continued to deteriorate and died five days later.
The initial delay in diagnosis had denied him the chance to access any treatments until it was too late. This unfortunately could be described as a none rare Maori person’s health experience in Aotearoa/New Zealand.
The chemotherapy did not help and had thrown him off the edge of his own cliff. We treated him respectfully and had supported the choices that he made, even when he chose to go against our advice. He had no regrets as he died while trying to stay alive. The only thing that he actually wanted stay with his family and to see his grandchildren grow up.
Another reminder that it’s not about us, it’s about the people trying to live their own lives that matter the most.
Never assume anything.
Trust has to be earned.