Our lives are increasingly digitised. I remember when my grandparents died, we went through their paper phone contact book to find out who we had to call. Now, with everything from banking to social media taking place online, things have changed.
How can we prepare for our #digitaldeath, after our bodies have died? What will your #digitalafterlife look like? #EOLC #pallanz
He was found on the floor after having fallen down while walking back from his bathroom. A human arm should not have been able to bend at the odd angle that his arm was in. He was in terrible agony and an ambulance was called to take him to hospital.
I met him the next morning on the post-acute ward round. Overnight he had his fractured arm operated on, and screws and plates had been installed in order to fix the broken limb. He needed help with toileting and needed help with feeding. His other limb had been affected by cancer some years ago and had been removed along with his shoulder in an operation called forequarter amputation. It was terrible luck that his remaining arm had been badly injured.
Labels are easily applied to people but are not always appropriate. DNA – Did not attend is one of the commonest labels that can be given to patients and often no attempt to check their actual circumstances is actually made. DNA is a label that sticks to someone and can bias clinicians against patients without allowing them a chance to explain themselves.
Here’s a story about a patient that I met on a home visit many years ago which changed my thinking about the DNA label and labeling in general.
I don’t feel well. I’m having trouble breathing. I feel so tired, but all I do is sleep. I’m feeling too weak to walk to the toilet, I almost fell over last night.
The nurses told me that you’ve had bad pain, but that you didn’t want to take pain relief.
I need to finish sorting out my legal affairs, I don’t want to leave too much for my friend to have to deal with.
Our social worker can help you with that stuff, she can talk to your friend. What else is bothering you? You look worried.
Doctor, I think I don’t have much time left, I feel so terrible, I don’t even have energy to talk to my sisters back home. Why do I feel so bad?
You’re getting worse, it’s the cancer, your body can’t handle it anymore. I think you are dying, and you might only have days left to live.
I thought so, I just need to sort my stuff out…
Then you’d be able to let go?
Yes, I don’t think I can hold on for much longer.
I think I can make you more comfortable, putting up with pain will use up your energy even faster, and make you more tired. Can I increase your pain relief a bit? It might make you less tired.
Okay, if you think it will help.
We’re going to get you through this, and even if you fall asleep we will continue to try to make you comfortable. We’re going to get you through this. This is our social worker, she can help you with your stuff.
Thank you doctor.
Please let us know if there is anything else we can help you with. I’ll see you later.
Yeah, lockdown hair. I usually look different, like in my ID photo, I have a nose and a mouth under my mask.
So what do you want?
I’m here to find out how you are.
I can’t keep anything down, whatever I swallow comes back up. I’m too scared to eat anything. There’s something wrong with my poos too, haven’t been for four days, usually go twice a day. Last time it was black and sticky.
Do you have pain?
No, no pain but my tummy is getting bigger, sometimes it’s hard to breathe.
Hmm, listening to your tummy it’s very quiet on the left side, but loud on the right side. What do you think is going on?
I’m feeling worse, much more tired the last few days. What’s happening in my tummy?
We know that you have cancer in your tummy. It can act like speed bumps on a road, slowing down your gut traffic, that’s why your poos have slowed down. If there are enough speed bumps in your tummy they can act like a road block, then traffic can’t get through, and has to come back up, that’s why you’ve been vomiting. We can try to loosen up the roadblock with steroid medication, and we can try and push the traffic through with another medication, but…
Here’s a short story that I have shared with children of various ages who are losing or have lost their mothers.
Prior to Medical School I completed a Biochemistry degree. I learnt all about the important biochemical reactions that sustain life as we know it. Some of the most important reactions require mitochondria, which are present in each and everyone of our cells.
Mitochondria can be thought of as the power plants of each cell. They allow energy to be released, keeping each cell, and each person alive. Without mitochondria we could not live at all.
Another special thing about Mitochondria is that they were likely an introduced species, likely to have developed on their own. Millions of years ago they struck up a relationship with the rest of the cell, and the successful partnership has continued on ever since.
An interesting thing about mitochondria is that they are only passed onto the next generation by the female of the species. Thus in each cell of our bodies there exists a tiny part of our mother, our mitochondria, which if not present, we could not be alive at all.
This started when the very first mother passed on her mitochondria to her children, and from her female children to their children, right until the current day.
No-one can ever take mum away from you. Even though mum may be dying, she will live on in every single cell of your body, along with your memories of her.
My grandma taught me to read when I was only 4 years old.
She told me about alot of cool worlds.
We visit them in some of the games we play.
My grandma is my bestest friend fourever.
In the picture I drew of her she is wearing a cape.
That was when we played supa-heros together.
We had the funnest time ever.
I laughed so much I almost wet my pants.
You want to know a secret?
Grandma is my fave.
It was scary when Grandma got sick. She had bad pain in her tummy, and was shivering then mum called 111. I visited Grandma in hospital. It’s a ginormous place. The nurses were nice to me. That doctor is a meanie. She made mum and Grandma cry. Something is wrong. Was it me?
The following are my own personal professional views and do not represent those of my employer or of Palliverse in general.
I’m not interested in debating the pros and cons of assisted dying, everyone is entitled to their own opinions. In Nov 2020, 82% of eligible voters voted in the referendum, 65% of the voters supported the End Of Life Choice Act 2019. Aotearoa/NZ clearly stated it’s opinion last year, and in two days’ time it will become law.
I do not want my patients to be caught in the middle of two warring ideologies.
I am not here to argue, I am here to listen to my patient, I am here to learn from them. They are the expert when it comes to what they are going through and their suffering is defined by them, not by me.
I think that we in Hospice/Palliative Care need to build a bridge and get over ourselves. Our focus should be on our patients, not on ourselves.
Please treat patients with respect, they weren’t born yesterday, but they might die tomorrow.
It’s ironic that I am writing on a daily basis now when I barely paid attention in English classes and did not even do English in my last year at high school. I had a bad attitude back then and scoffed at having to read Hamlet, 1984 and Brave New World, choosing instead to read Alan Moore and Dave Gibbons’ Watchmen. Interesting that I can still remember all four books 31 years later.
The same applies to behavioural science lectures during medical school, I didn’t realise that upon graduation that a lot of the psycho-social-spiritual-cultural stuff covered in those lectures would be much more important in my day to day work life than the physical stuff. My training was in the traditional biomedical reductionist style. Medical school takes a young tree hungry for growth and knowledge and whittles it down to a sharp but prickly toothpick, with an ego the size of a man-made forest developed along the way.
In Aotearoa/New Zealand the End of Life Choice Act 2019 will be enacted into law on Sunday 7th November 2021. Written in the voice of someone who is considering accessing assisted dying is a further conversation that they might have with NZ Hospice/Palliative Care, if only they would deign to listen.
The last time we talked I was not at my best, I was angry, upset and scared. I’ve had time to reflect and have looked at things from some other viewpoints. This is not an apology because I need you to see me as I am, I don’t want to have to pretend in front of you. I need you to understand how I feel, and what I am going through.
Thank you for not running away, like the others did. You said that you have similarly emotionally intense conversations all of the time, and that you have been trained to be able to handle them. You certainly used it to take the opportunity to get to know me better, and to explore my fears.
That being said, I shouldn’t have sworn at you, that is not me. I am usually much better at controlling myself. My anger was not just directed at you, I’ve been through many frustrating interactions during this illness journey, and it all just exploded the last time we met.