It had taken months to earn their trust. I had to show a willingness to listen. To demonstrate flexibility in shared decision-making. Each clinic visit involved negotiations. I thought I could make them more comfortable with my medications. They did not want to try my medications. I pushed, and they pushed back. I pulled, and they pulled away. I made lots of suggestions, but most of them were shot down. The interactions were always polite, but it was difficult to engage.
I was sure the treatments were making them feel worse, but they would’ve done anything to live longer, no matter what the personal cost. 12 cycles of chemotherapy meant eight months of being imprisoned mostly at home. Unable to venture far from the toilet because of the almost constant diarrhoea. Always accompanied by crampy abdominal pain, day and night. Long days and longer, lonely nights. There was no way to rest properly apart from the few days between cycles when they’d feel almost normal again. Then it was time to start the next cycle.
They had planned a trip with their family. They wanted the children to travel with them to far-off lands. They wanted to create a memory of an exciting family trip. The journey was booked for six months. I was worried about our patient living through the next four months let alone six months. I talked about smaller trips closer to home. The children just want to spend time with their parents. It doesn’t have to be fancy. Short day trips would be just as memorable. The children missed their parent’s cooking. Their other parent didn’t cook as well despite their best efforts. The kids longed for a taste of normality.
We got to know each other during further outpatient clinic visits. I would listen to what had been happening. I would make suggestions, most of which would be rejected.
“Not yet, I’m not ready yet.”
“Okay, will you try this instead?”
“Only at a low dose.”
“Sure, I’d normally start at a higher dose, but please try it out.”
After the clinic visits, I would write letters to the Oncologist, suggesting that the chemotherapy treatments were making things worse. Eventually, the treatments were discontinued.
The patient came in with their spouse and we agreed to try different pain relief agents. I offered an inpatient admission, but they were not ready yet. The pain was worsening but they did not want what we had to offer. A week or so later the patient ended up in the hospital and had an uncomfortable night. The following morning they asked to be admitted to hospice, fortunately, we had a bed available.
They were willing to try other medications for pain but were not interested in anything for nausea or distress. We listened and followed their guidance. We managed to control the pain well over the next week. Just in time for a child’s birthday party. The smile said it all our patient felt better once the pain was controlled. Discharged home after the weekend.
During further clinic visits, more was revealed, including private information. Trust was growing between us. Fears were explored. Negotiations continued but progress was made. Back to our clinic every few weeks, then more often as their condition worsened. Too obvious weight loss revealed cheekbones and muscle loss. They shrunk as what was within them continued to grow. The mind and will were as strong as ever but the body was diminishing. They didn’t want to feel sleepy and thus put up with more pain than I would’ve liked them to. Determined to stay themselves, no matter the cost.
On the last visit, things were different. The first admission of fatigue, the suffering had become too much to bear. They talked openly about death and dying, that it would be a relief from suffering. They agreed to higher doses of pain relief and other medications that had been rejected many times before. We discussed the possibility of their losing consciousness soon, and a promise was made that we would keep them comfortable and work to maintain their dignity. They felt understood and cared for.