I think therefore I am? – Injured Pride

Yikes, I injured my dominant hand’s middle finger at Brazilian Jiu Jitsu (BJJ) last night and I need to wear a finger splint for the next 6-8 weeks. Typing has become slightly more difficult. I will need to try some dictation software or apps and any suggestions will be most welcome. I made myself a splint from a used pen part:

The things I have taken for granted include good health and a functional body that does what you want it to. The next six to eight weeks may teach me a few lessons about living with a minor disability. In the paragraph before I typed the numbers 6 and 8. In this paragraph, I have typed the word forms. 8 keystrokes versus only two.

What will be affected?

Changing clothes.

Toileting techniques will have to be adjusted.

Showering.

Hair-washing, styling, drying.

Dishwashing and cooking will be attempted left-handed.

No BJJ – Groan, I am mildly addicted to it and usually go twice a week.

Hand – washing, writing, cleaning.

No high fives!

No finger snapping.

What opportunities may arise?

Getting into fights and arguments as I accidentally Flip the Bird as my right middle finger will be splinted in position.

No handshakes – Thank goodness for COVID!

I can compete in the 100mm Splint Race.

No one will tell me to pull finger anymore.

No more finger-push-ups.

I can try to break the world record for dirtiest finger.

I’ll save on right middle finger cleaning costs and help the environment at the same time.

I get to build up all the muscles on my left hand and arm:

Palace of Care – Earning Trust

Photo by Nick Fewings on Unsplash

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.

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I think therefore I am? – Not On My Watch

Photo by Mikell Darling on Unsplash

It distresses me to hear on the grapevine of how patients, who have chosen to have assisted dying, in other palliative care units have been treated by staff. Following the revelation of their wishes I have heard of staff treating the patient differently. Not wanting to engage with them anymore, giving them the ‘cold shoulder,’ because of the choice they have made. Some staff refuse to attend the patient even if they push the call button when they need help.

It’s called discrimination. Treating people differently because they are different. In these cases because they have chosen something the staff do not support. A difference of opinion leads to stigmatisation and a change in the mindset of the caregiver. This does not fit in with my own care philosophy. I will not abandon someone due to the choices they make not fitting with my own beliefs. I am in my role for the sake of the patient and their family. They are not there for the sake of my existence.

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I think therefore I am? – A Sense of Urgency

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The one thing I want my students to learn about palliative care patients is they need to be treated with a sense of urgency. Life-limiting illness is time-limiting illness. Therefore patients’ time must be treated with respect, as it is precious and beyond price.

If someone only has six weeks left to live and you make them spend six hours waiting in a clinical setting, you are robbing them of valuable time. Time they could spend doing important things. Having important conversations, meeting people possibly for the last chance to say goodbye. Bringing closure to long-term relationships. Time spent with friends and family. Time they could choose to do, whatever they want to.

Please do not waste their time, as they can never have it back again. No matter how much money someone has they can never buy back time. Please treat dying people’s time with respect. It is their time, not your time. Please treat palliative care patients with a sense of urgency. Time is running out for them.

Palace of Care – Slump

Photo by Aleksandr Barsukov on Unsplash

I thought I was invulnerable. I was wrong.

I tried to continue writing daily posts even during my COVID infection. I failed.

I wanted to think my way through brain fog. It didn’t work.

After three days of being unwell, I thought the fourth day would be better. It wasn’t.

Being sick sucks. How do my patients cope with it?

I found myself unable to do anything on day 4 of my COVID experience. My brain had slowed down and it felt like I was swimming through treacle the whole day. I stopped writing and didn’t do any reading. I didn’t watch anything, my head was too full of mist. My mind was clouded and refused to compute.

The treacle started to dissolve and I found my way to the keyboard again. I haven’t felt like myself for over a week.

At least it stopped raining today. Sunshine returned to evaporate the vapours in my head.

Palace of Care – A Painful Day

Photo by Fusion Medical Animation on Unsplash

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.

I am hoping for a better tomorrow.

I think therefore I am? – SEP

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Ford Prefect says, “An SEP is something we can’t see, or don’t see, or our brain doesn’t let us see, because we think that it’s somebody else’s problem. That’s what SEP means. Somebody Else’s Problem. The brain just edits it out, it’s like a blind spot.”

The Somebody Else’s Problem field… relies on people’s natural predisposition not to see anything they don’t want to, weren’t expecting, or can’t explain.

From Douglas Adams’ Life, The Universe and Everything 1982

The SEP field generator is an incredible thing, where-ever you shine the beam, like an amazing piece of magic, suddenly the problem disappears and becomes someone else’s problem.

Sound familiar when you think of palliative care patients and their problems?

Other specialities do this to us all of the time, they leave work unfinished or not even attempted. They somehow know that us good-natured folks will make sure that things are sorted.

This isn’t really fair to us, but especially unfair to the patient. Where is the patient in all of this? Certainly not in the centre of attention.

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I think therefore I am? – Dropped

Photo by Rod Long on Unsplash

I feel so lost, I feel so alone, aren’t I good enough for you? What did I do wrong? Why did you change so suddenly? I thought you’d always be there for me. I thought you’d have my back.

Many different people may be felt to be the other, this can have a racial basis, or be on a religious basis. People are labeled as other to justify treating them badly, and this is an unjust situation in this day and age. What other justifications are there for bad treatment of our fellow humans?

Palliative care patients may face stigmatisation for being closer to dying than most people. Oh well they’re going to die anyway, so why should we bother taking care of them? Just shove them in the corner and pull the curtain around them, and forget about them. Out of sight and out of mind. Not my problem mate. Who cares they’re dying anyway, not worth me expending any effort on them. I beg to differ, dying people deserve even more respect, as they are about to leave our planet, off to somewhere else, destination unknown. What will happen next? I don’t know.

It hurts to be rejected, to be pushed away, sometimes literally pushed away. I don’t want anything to do with you. Please leave, bad enough when you are trying to find a date, but when you are at the end of your life, how much more hurtful could that feel?

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I think therefore I am? – Yearning for connection

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What this palliative care doctor thinks:

It’s not just about language, that’s why Google translate can’t replace human interpreters at the moment. It might be able to translate the words literally from one language to another but it doesn’t yet have the cultural context of where the words came from. The history of the language has not been programmed into it. Take English for example a lot of the words we use are derived from French and other Latin-based languages. You don’t ask for sheep meat, you ask for mutton from the French mouton. Similarly beef, not cow meat, from the French boeuf. A translator program is not the same as an interpreter program. Google Interpret would have to be much more sophisticated and would need cultural programming as well as linguistic programming.

A person may be speaking Chinese, but they are also living Chinese. The food that they eat, the clothes that they wear. Rituals that they follow to celebrate life, and how they deal with death and dying are the missing parts of a person’s identity that cannot be easily translated.
The most important tool I have as a palliative care doctor is my ability to communicate. I make a point of greeting my patients in their native language as much as possible. My accented version of their language is my attempt at providing them with a hint of familiarity. In the area I work in people come from all over the world, from lots of different cultures, with over 200 different languages spoken in our area. I certainly do not know all the greetings that are available but a quick Google search can provide me with at least a few words of greeting. A little demonstration of respect that I have made the effort to try to connect with another human being. It may have taken me ten seconds to type in my query but it can often bring a smile to a weary sufferer, whose illness has taken over their body. Someone for whom English may be a second or third language. A little snippet of home, can make a real difference.

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Bedside Lessons – 12. Zero Degrees Kelvin

Photo by Long Ma on Unsplash

Times of crisis can bring out the best or the worst in people. This is a tale from the dark side.

Before she became ill everything seemed to be perfect. Happily married to the love of her life, they were proud of their three adult children. The eldest already married and had produced the perfect grandchild. Second child a beautiful daughter who was talented, and about to enter the workforce. Youngest son, mummy’s boy, had started university and was on his way to doing something useful with his life. The family portrait was beautiful, three generations of the family all dressed in white shirts and blue denim jeans. What a beautiful family, united in their faith and religion. Stalwarts of the church, the example that the congregation all worked towards becoming. The golden family.

Illness arrived and caused major distress. The mother had always had alternative views to healthcare, had wanted naturally based treatments or no treatments at all. Unfortunately due to metastatic cancer she had to consider many different treatments, and many different medications to treat her symptoms. This soon became a torment for her, challenging her core beliefs. She tried to handle her pain as much as she could but it was so deep, so pervasive, so severe that even her iron will started to rust, to bend beyond it’s inherent structural integrity.

She was admitted in a pain crisis, having not slept for 10 days, woken by pain, exhausted with her family at their wit’s end as well. A highly distressing situation for them all. The facade of perfection had also started to crumble.

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