This blogpost is dedicated to a patient that I never thanked for the part she had to play in my palliative care education.
The sharing of patient stories can have a huge role to play in the education of healthcare practitioners and laypeople. Palliative Care health literacy remains relatively low despite palliative care services having been present in Australia and New Zealand for well over three decades. Relatively few healthcare practitioners let alone members of the general public understand the role that palliative care services can have in the improvement of quality of life. Are we sharing the right stories, in the right places, to the right people?
Here’s a story about a patient, from whom I learned a lot from, which I share with students and other visitors to illustrate the importance of good symptom control, in the improvement of quality of life:
Years ago when I was a registrar at one of the local hospices I admitted a patient who had previously been in hospital with a two weeks’ history of severe nausea which had not responded to treatment. The hospital teams had used various anti-emetics in various combinations with limited success, which left me wondering what we were going to do as it seemed like everything else had already been tried.
She was exhausted and was despairing as she felt so physically awful. After spending ten minutes with this patient who sounded and looked very miserable, I myself felt miserable. I’m having trouble finding the right phrase to explain the transfer of feelings from the patient to me – maybe the counsellors/psychologists in the Palliverse community can help me? Counter-transference is not the right term for it. Was it a form of empathy?
Whatever the correct name for this transfer of feelings, it was likely that I was only feeling a small percentage of what the patient was actually feeling. I felt miserable so she must have felt much, much worse.
I had to go back to basics with this patient and started over again in terms of treating her nausea. Initially there was not much improvement and on reviewing the patient over the next two days I developed a reluctance to see her. My heart sank as spending time with her made me feel more miserable myself.
On the third day I knocked on her door, and went in having already braced myself for another dose of misery. Instead I was taken aback when I entered the room as my patient had been replaced by someone who acted very differently. I had the pleasure of meeting for what seemed like the first time, a lady who was smiling, engaging and very funny with her constant joking. Personality-wise she had been transformed and I could barely recognise her. Her nausea had become controlled by the medication changes that had been made the previous morning. This had allowed her to enjoy her first good dinner in weeks, and she had slept well too. I left the room after having said that it was nice to finally meet the real her.
Over the next days I had the pleasure of learning about the full life that she had led. Her life had been filled with laughter and fun from the two husbands that she had outlived. She spent a lovely week catching up with friends and family including her grandchildren. Improved symptom control had bought her this precious quality time but then she took a turn for the worse, and ended up needing end of life care.
Hospice New Zealand’s official motto is, “Living every moment.” Our job in palliative care is to try to enable this to occur as much as possible. Poorly controlled symptoms lead to suffering and decreased quality of life, for both patients and their families. It is as if the “cloud of suffering” suppresses the light of the person’s true personality. Good symptom control can allow the person a chance to be themselves again – to allow their light to shine through the gloom of their discomfort. It can provide an opportunity to create memories with their loved ones again. It can also provide much job satisfaction for the palliative care provider.
Thank you funny lady for sharing your stories, and for what you taught me all those years ago, about palliative care and quality of life. I still treasure the memory of your smiles and laughter.