I have lived in-between for most of my life. I grew up between two cultures; the Chinese at home and the Eurocentric outside of my home. Later in University, I was part of the local Chinese Group but felt more comfortable as part of the newer Asian immigrant group. I have a lot of experience in bridging between two different cultures which are different in many ways and may think they have little in common. Palliative Care lies in between the usual medical culture of active treatment and the culture of death and dying. Was that what attracted me to Palliative Care? Are we there to bridge the gap between cultures?
My colleague Kaye Basire wanted everyone to know about this event which will precede the Hospice New Zealand conference 2022. The draft agenda can be downloaded below:
Aotearoa Palliative Care Research Day – Hybrid Event
We all recognise the importance of research in enhancing patient care. However, clinician led research in Aotearoa is often restrained by lack of support and resources. This is particularly acute in palliative care where there is often a sense of isolation due to the lack of national palliative care research strategy and network.
The Aotearoa Palliative Care Research Day is an opportunity for all current and budding palliative care researchers, to network and share ideas on advancing palliative care research in clinical settings. Prior research experience is not required.
Content of the day includes sharing of experience by practitioners who have incorporated research in their clinical work, translation of research findings into practice/policy and collaboration with academics.
One day Rinpoche’s mother invited me to have dinner with the family. Rinpoche was six, and he loved dinosaurs. He had a collection of various ones and knew all their names. He was playing with them when I arrived.
When it came time for me to leave, I asked if I could borrow a torch but she didn’t have one. Rinpoche came to me and insisted on giving me one of his dinosaurs. “This will help,” he said as he pressed the small green coloured plastic dinosaur into my hand. I took it but was doubtful that it would.
The night was dark, no moon in the sky or stars. I walked slowly but carefully towards my hut, which was some distance away. Along the edge of the monastery forest, there was a narrow path lined with trees leading up toward the stupas. There was a drop of a few meters on either side of the path I followed the line of the trees relying heavily on my memory to guide me. I came to an area that was unfamiliar beside the stupas it entailed walking down three steps .The darkness seemed to envelop me. Not sure what to do, I felt the dinosaur in my hand and looked down and to my surprise saw the dinosaur aglow with enough light to show me the path.
I smiled in the dinosaur light at the wisdom of the young Rinpoche.
My little coronavirus rock band continue their tour of my body. They wrapped up their sold-out concert in my throat and the music was so loud my ears are still stinging. Today’s destination was my lumbar spine and they played their achy breaky music with gusto. No matter how often I stretched throughout the day the music of the band drowned out all other signals.
I have to be honest I am sick of all the merchandise the band brings along to each venue they play at. The congested stands of my nasal sinuses couldn’t stand the pressure any longer. The burning man set up in my throat yesterday is still smouldering and ready to reignite at a moment’s notice. The worn-out muscle fibres evidence that this band of players have worn out their welcome.
The uncertainty of each day of illness. Will I feel better when I wake up again? Will I be in less pain than yesterday? These are questions I am considering each day and are they similar to what my patients must ask themselves? I’ve only been unwell for a few days but my compassion for those who suffer from chronic illnesses is growing.
Maybe tomorrow the band will head down to my feet and then it will be my pleasure to kick them out of my body. There will be no request for an encore.
New day, new symptoms. The whole body aches and pains subsided today which was a relief. Just as I was lulled into a sense of lessening unwellness, something else arrived to knock that idea out. A sore throat the likes of which I had not experienced since I had my tonsils taken out as an adult came to say hello. I would describe it as swallowing rusty liquid razor wire. It was such a lovely greeting that with each swallow I was overwhelmed with emotions and tears came to my eyes. I threw all the medications I had at it, and then some, but nothing worked apart from lying down in the foetal position, but that didn’t bring any relief. Or was I lying down in the recovery position? Probably not as I do not feel recovered as of yet.
I was hungry and had to eat through each painful mouthful. The dry crusty parts of the bread were like sandpaper on my disease-ravaged throat. I winced and grimaced through each gulp of food. My appetite had returned but had to contend with the pain barrier. I persisted and after a few minutes, the pain started to abate. If the drugs don’t work make your own. As a response to the pain, my body produced endogenous opioids, bringing relief to my agonised throat. The second half of the meal was swallowed with relative ease.
Both of my Latissimus dorsi, those big wing-like muscles on the sides of our backs, were aching today as if I’d had a huge workout yesterday, which I hadn’t. My pectorals on the opposite side of the lats also felt similar. I had not done any heavy lifting at all but had done some coughing yesterday. Curious symptoms continue to be collected. What will happen tomorrow?
Two stripes on the RAT test confirmed my suspicions, after a night of fevers and body aches. COVID positive. Painful muscles and joints, headache and some hyperalgesia.
I make it a habit to expose myself to some suffering daily with 30 seconds of a cold shower each morning to wake me up. Twice a week I go and train Brazilian Jiu Jitsu. Through this sport, I have learnt to keep calm in uncomfortable situations. Fighting against painful joint locks and against choking attempts has built my resilience.
Today I feel that I have overdosed on pain, which has persisted despite my taking Paracetamol and Ibuprofen. Putting up with pain is exhausting which I had some inkling of from the many patients I have cared for. A doctor needs to have some suffering experience to understand what their patients are going through, but today’s lesson has been a bit too long and unending.
Each place has its way of doing things and when people from different cultures intersect there may be clashes and discord. Some cultures will under-treat, and others will over-treat. Where will Goldilocks feel most comfortable? Too much of a good thing isn’t always a good thing. The most expensive treatments aren’t always the most effective.
Inequity pervades the world. NZ-trained doctors who have traveled back to Asia may be shocked that people with non-survivable strokes are kept on life support for weeks or even months as standard practice. Their relatives with end-stage dementia are fed via tubes and the quantity of life may be prolonged for lengthy periods, of up to years. This does not always come with any discernible quality of life benefits.
People may be from healthcare cultures in which the patient and family can have whatever they desire if they can pay for it. This can include experimental therapies with or without scientific bases. Desperation can lead to high sales figures but is there any care in those types of healthcare? People search all points of the compass but do they find any compassion? Expectations are set but people do not become settled. When time is of the essence is it correct to waste it without people’s informed assent?
Her brain had no trouble accepting what was happening but her emotional heart took longer. The love of her life for over 45 years of marriage was dying. The doctors had warned that he might become confused and agitated as his condition deteriorated. He was comfortable and the pain relief had taken a few days to optimise. He was more relaxed and then deteriorated. He became less lucid as we neared the end of the week.
A clash of cultures became evident thanks to some of the visiting friends of the family. “You have to ask your doctors if they will give infusions to your husband. In China, he would be having lots of intravenous fluids, and other treatments such as tube feeding.”
We had to explain that artificial hydration would be too much for the dying person to handle, and would worsen skin swelling and likely worsen his breathing. We did not want to add to his already heavy burden of symptoms. His wife indicated she understood our rationale. We explained he could die at any time.
Intellectually his family could accept the ongoing bad news, but when it came to emotions it would take much more time. Their loved one was dying and all they wanted to do was to help but didn’t know how to. Mouth care was a task that we delegated to them. Our counsellor was asked to talk to the family.
Their brains understood the words we shared, but their emotional hearts couldn’t understand the language and operated on feelings instead.
I first met our reluctant patient in the outpatient clinic with his girlfriend. It had taken a number of phone calls before he would come in for assessment. He was scared of hospice and had resisted his Oncologist referring him to us. He didn’t know what we were about and what he didn’t know frightened him.
He had been unwell with cancer for over a year with severe pain making him unable to sit or lie down for more than an hour at a time. Sleep was difficult for him and he was woken up several times a night by burning pain that spread down his right leg. He wasn’t keen on any changes in medication, and it took much negotiation for him to allow us to increase the doses of the pain relief agents he was already taking. He didn’t want to consider anything new, just yet. As his pain was so severe I offered to admit him into the inpatient unit but he wanted to stay at home.
Over the next month, his pain did improve but any relief would only last for a few days at best. We again offered to admit him for pain control but he still wasn’t ready. Some weeks later the pain had worsened bringing tears to his eyes. His mother and girlfriend were exhausted and felt helpless as they couldn’t help reduce hisWith encouragement from his mother and girlfriend he agreed to be admitted.
We started him on a different opioid that afternoon. The next morning he was full of smiles. He told us he was pain-free for the first time in two years. He stayed a few more days as we helped him with other issues, and then he went home. As well as good pain control we had built a trusting relationship that would help during his next admissions.
palliverse.com 