When we met, I had just started my second year of specialist training in Palliative Medicine. I was keen to use my new-found skills and knowledge in the hospice inpatient setting. When I assessed him I was sure that I could successfully treat his pain and that I could decrease his suffering. Management plans swirled in my head and I started to offer him strong analgesics in order to cover his severe pain. I talked to him in an excited manner about Morphine, Oxycodone, Methadone, Gabapentin, Nortriptyline, Fentanyl. He was not interested and would only take Paracetamol. Hmm, maybe we’ll try again tomorrow.
His father was a high ranking officer in the Hungarian Army, and the family fled at the end of World War II. He was born in New Zealand and was the only child of relatively older parents. Even though he had no memories of the war himself, he inherited his family’s war-strewn trauma. They had faced tough times, having being used to an once luxurious life and then having to adjust to life on a refugee card. It was a harsh reality check from which his parents had never recovered. His father died when he was barely a teenager, and he had to learn how to shave on his own. He lived with his mother until she had died ten years ago and he had never had a partner.
The next day I tried again, as our clinical team became increasingly concerned that he was in pain, in a hospice setting, and that we were confident that we could make him more comfortable, if only he would let us.
He started feeling unwell but did not know why. There was a spot on his face, which grew bigger. He didn’t take too much notice of it until one day he cut it while shaving, and it wouldn’t stop bleeding. He ended up in hospital and then his carefully balanced house of cards, fell to the floor. Investigations revealed a facial cancer, that had already spread down to the lymph nodes in his neck. This meant that an operation to remove the cancer could not be performed without risking important blood vessels and nerves. Radiation therapy in combination with chemotherapy was recommended. This was started quickly but was hard to tolerate, his face and neck became progressively more sunburnt, on the inside. He was unable to eat properly because of side effects, and they placed a nasogastric tube down into his stomach, in order for him to receive liquid feeds. He really missed the taste of food.
Different day, but same conversation with exactly the same result, no sale.
Despite the treatments, his condition worsened. Shaving had become too painful to tolerate as his skin had become extremely sensitive, even the lightest of touches would cause burning pain. The beard also hid the skin underneath which had become discoloured by both cancer and treatment effects. The cancer clawed at his face like a tiger, eating him away piece by piece and making him want to roar in frustration
Ground Hog day was about to repeat itself on day 5, when he suddenly decided to change the script. He looked me straight in the eye and said to me, “Look James, Can you stop asking me to take your medications? I need to feel my pain in order to remind myself that I am still alive. If I change my mind I will let you know.”
“Okay man…we’ll do it your way.” We didn’t ask him to take our medications again, even though we knew that he had pain. It was really hard to not do our usual job, he would accept physical cares but would not take stronger pain medications. Putting up with pain, used up precious energy and he deteriorated quickly.
It was not easy for me and the rest of the team to support the choice that he had made, to watch him suffer, but it was the right thing to do. He had chosen his final path and he did not deviate from it. He died in terrible pain, but he had done things in his own way, controlling things in the only way he could.