I wanted to share this experience because it was an encounter that had a profound impact on me. It’s a lengthy post because I needed it to be. It’s not intended to be a judgement of any of the people involved - they were all care providers doing their best in what was a very difficult situation.
I’d actually requested to see Amanda when she first came been admitted to the palliative care service three months earlier. She stood out because she was a younger woman with metastatic breast cancer who had refused all conventional treatment and staging of her cancer. That was far from routine. I’d suggested at the team meeting that she might be more receptive talking with me about her treatment options seeing as she openly detested doctors. But I was told in no uncertain terms that it would be inappropriate. I thought they were wrong but I was new to the team left it at that.
I went up to see her in the hospice. She was around the age of my sister but looked more like a sick version of my mum. Her skin was dull. She couldn’t move much beyond lying in bed without getting short of breath.
I could tell just by looking at her drug chart that how she made decisions about medicines was not typical. There were medicines missing that you’d expect to always see for someone in such pain. The few medicines that were there to manage symptoms were being administered in non standard ways. Her bedside table was spilling over with bottles of supplements, twenty different formulations in total.
She tested me out by asking me questions and I could see her assessing my responses. I must’ve done ok because she started letting her guard down.“I always ask the doctors about side effects but they only talk about medical things…not the stuff I care about”.
She shared with me her philosophy to alkalise the body, maximise nutrition, avoid toxins and get antioxidants. She told me how she will only take pain relief if it doesn’t affect her brain and doesn’t damage her liver.
Eventually we got to talking about her decisions about her cancer treatment. She told me with absolute certainty, “there are three ways they get rid of cancer - cut, kill or burn”.
I asked her if anyone had ever talked with her about tamoxifen? She responded “they come in and try to convince me to do what they want.”
I felt unsure about what to do next, but she had made it clear that she wanted access to information. I revisited her earlier statement about cancer treatments cutting, burning or killing. I explained that while it used to be that way, newer treatments work like normal drugs. Tamoxifen only works on cells that feed on oestrogen to slow the growth of the tumour.
“No one has ever explained that to me in such clear terms before”. She thanked me and commented on how she wished she’d talked to me ages ago. She asked me for some written information and I provided it to her.
I left the hospice and found the medical registrar who was looking after her to fill her in on what happened during the consultation. I knew it was probably too late, but Amanda was open to the idea of tamoxifen now. Her response; “we’ve told her that heaps of times, she’s just scared now”.
I felt deflated. Maybe I did misread the interaction? Regardless of whether or not that were true, I made my recommendations for changes to make her medication regimen and left it in the hands of the registrar.
Two months later Amanda asked to see me again. She was a shadow of her former self, now nursing a broken hip, and less able to communicate. Much slower in her speech. I listened to the concerns she had about her medicines and we talked about options to manage them. As we finished taking she thanked me again and told me “I asked to talk to you because I believe you listened what i was saying last time so you can help me communicate that to the team”.
If I felt deflated after our last interaction, now I felt guilty. I felt like I’d let her down by not pushing harder past the gatekeeper when I first heard about her. Ashamed that even though I’d earned her trust, I didn’t have the trust of the team.
I’ve never met anyone like her since, and to be honest, I hope I never do. But each time I have the opportunity to consult with a patient I remember very clearly what I’m there for; to listen to the patient and find a way to engage them in constructive dialogue, not polarised debate.