Palace of Care – Referred Again

Photo by Gabriella Clare Marino on Unsplash

When I received the second referral for our man with Chronic Pain I decided to be a bit more careful. Again he didn’t fit within our referral criteria, he didn’t have a life limiting diagnosis which is usually one of the non-negotiables for people under our care. That’s what it looked like on paper, but I will always give a person the benefit of the doubt. We only decline a small number of referrals to our service and most people will have at least one face to face assessment. I decided to see for myself as I knew him better than most people on our team. I arranged for a home visit later in the week.

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I think therefore I am? – Self-care needed to be prioritised, again

Photo by Nickolas Nikolic on Unsplash

I found myself having to really question myself as to what I was doing. Professionally I was promoting self-care to everyone at work, and to the audiences at the lectures I was presenting. I felt like a fraud at times as I wasn’t practising what I was preaching myself. I had to do what it said on my packet I had to stop and have a break for myself. That meant a stop to the blogging and the daily writing. It was supposed to only be for a few weeks but it ended up being three months, and it was okay. I’ve restarted things again but at a smaller scale. I started timing myself for ten minutes a day. I would write for a minimum of ten minutes a day and what would appear would appear and we would see how it all went.

I was back again, writing daily, posting to the blog daily and it felt good. I hadn’t realised how much I had missed the therapeutic aspects of the writing. Also the writing community engagement had been missing over the three month period. I was back in the swing of things again and it was good to feel more like myself again. Some of the pieces of writing ended up being work pieces or parts of assignments I was doing for online courses. Things started feeling too stretched last week and I had to release the pressure again. People all around me in the different parts of my life were struck down by non-Covid viral illnesses and I wasn’t keen to join them. Instead of writing I went to bed. Instead of doing 15 minutes of Duolingo Spanish I only did the bare minimum to maintain my run streak. No-one was going to reward me with a badge for least amount of sleep had in a week. Gamification of my own health wasn’t worth it, in the real world it’s not so easy to spawn yourself back.

I’ve had another short break from the writing and I haven’t beaten myself up too badly over it. I am back again today and will be back again tomorrow. It’s the accumulated efforts over time that add up. What am I writing? My dailies which will become blog posts, which will become who knows? And that is okay. I just need to use the writing muscles again. To reactivate the nerve pathways. To gather up my energy again and make something with it. Daylight savings, travelling between time zones in the past week, and general life stuff have affected how I lived my life in the past fortnight. Other things out of my control have happened and have had to be dealt with. It will all be okay. All we can do is keep on going. One foot in front of the other. One word in front of another. We’ll see where we end up. We’ll see what comes of it all. Take it easy on yourself. There’s a lot going on. Be gentle and kind to yourself.

Palace of Care – A Self-Sufficient Family

Photo by Jay Wennington on Unsplash

One of the cruellest consequences of COVID lockdowns was the restriction that we had to place on visitor numbers. We were generous in that we would allow each of our patients up to four named visitors, but this still fell short when it came to families with more than four members. We acted with humanity and compassion, thinking to ourselves how would we feel if it was us in their situation? But what do you do when someone has 15 children? It is difficult for a family to choose who gets to come in, and who has to stay out. Video chat technology allowed for virtual visits but they were no replacement for in-person visits.

Our patient was a man in his 50s who had six children, the two eldest lived out of town. The four younger children were keen to spend time with their Dad, and their Mum struggled to choose who would be the nominated ones for any given day. The family had always been close and the parents had home-schooled their children. They had always done things in their way. Having Dad critically unwell and away from home added to the overall disruption of their family life. Our team’s opinion was that our patient only had limited time left to live. Given the circumstances, we flexed our approach and allowed the four younger children to visit alongside their mother.

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Sneak Preview from Bedside Lessons – Chapter 65 – Please Take A Seat

Photo by Stephen Audu on Unsplash

Family meetings are common in healthcare settings and are organised to convey a point of view or to try to bring together disparate points of view. These events may be the first chance that some of the key stakeholders, i.e. the family and the healthcare team, have to meet each other. First impressions, as within any first meeting, are important. As you can only meet for the first time once, you’d better do your best to make sure it goes well. To establish a trusting therapeutic relationship between the patient, their family and the healthcare team, rapport must be established quickly. Every encounter can count, but not everything can be planned for.
“Come in, please take a seat.” Oops not enough seats, I didn’t think there would be so many people joining us. “I’ll get some more chairs.”

“No doctor, it’s okay, we’re Islanders, we’re used to sitting on the floor.” He sat down on the floor in a cross-legged position and the rest of his family followed.
While dropping to the floor and re-arranging my legs into a well-versed pose, “I’m an Islander too, and I’m used to sitting on the floor too.” I was joined by my cross-legged team member. Eyes were in contact and were levelled, as were some of the power differentials. Serious issues were discussed in a different but more trusting fashion.

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Palace of Care – A Warm Welcome

Photo by Jen Gunter on Unsplash

I had never met her before but I had been told she was originally from the Netherlands. I wanted to make her feel welcome to our place and I had selected an orange face mask to wear. I was told of her arrival and asked my Dutch colleague how to greet and welcome her in Dutch.

A faded washed out looking lady sat in her wheelchair, accompanied by her daughter, son and his wife. Her skin looked translucent and had a slight grey tinge to it. I bent down so that our eyes were level and said.

Hoi daar (Hello there)
Welkom (Welcome)

She looked up at me with her dull eyes and there was the slightest hint of a smile in the corners of her mouth.

We wheeled her into the bedroom and with great effort and assistance from her son she was able to climb into bed.

I asked what she had done for work, her son could see his mother was too weak and tired to answer and said, “Mum was a nurse, in the last half of her career she worked in mental health.”

She needed a line inserted into her arm, this had been difficult before the chemotherapy had made the veins hide even more.

To put her at ease I talked about my first job after graduation. Psychiatric house officer, where I had to take care of the physical needs of over 40 inpatients. A busy job because a lot of the patients had many physical ailments and were overall people who did not take care of themselves well.

I recounted the first patient I ever examined. A man who was naked and stood in the centre of his bed with his arms outstretched in the crucifix position. He couldn’t follow my instructions as at the time he was incapable of conversing in any of the languages of the Planet Earth.

My next task was to take blood from a patient with suspected Neuroleptic Malignant Syndrome. This is a rare but potentially lethal condition that can occur in unlucky patients who are on anti-psychotic medications. Blood tests are needed to confirm the diagnosis. The problem I was faced with was the patient had been in a catatonic state for over a week. He was cast on his bed in the foetal position with both of his arms flexed towards his chest. I wasn’t able to access the veins of his arms at all. The first blood test I ever took as a new doctor was from the patient’s right foot.

These stories elicited a quiet chuckle and another wisp of a smile from my patient, who said, “My patients were always up to many antics. I can see you’ve been up to some yourself.”

I smiled and winked at her as I left her to spend some time with her family.

I think therefore I am? – What’s the best thing you did today?

Photo by Mark Daynes on Unsplash

Sure it’s great to ease suffering of some sort be it to dampen down someone’s pain, or to improve their nausea, or to help them with their breathlessness. Taking away a negative feeling is a good thing to do. Making a bad situation less bad is a worthy thing to do.

What if you can make someone’s situation better, even momentarily? That’s what I enjoy doing the most, having a laugh with my patients. Sure they may be critically unwell and may only have days left to live but they are still human beings and still want to be treated like a person. Finding something that can make them smile or make them laugh may just let them escape for a few seconds. A short moment of enjoyment is something worthy of pursuit.

My patient was dying of recurrent aspiration pneumonia. His swallowing had been compromised for weeks. Food and drink would be aspirated into his lungs, causing life-threatening infections. Even when he didn’t eat he would choke and aspirate on his own saliva. He was constantly breathless as his illness had stopped his breathing muscles from working. This situation could not go on. The nurses asked what we should do if was to aspirate further. I said, “We’ll keep him comfortable.”

I asked him if he felt like eating or drinking anything, and encouraged him to do so. It would not make things any worse, but might give him a small amount of simple pleasure. I suggested he could have anything that he wanted to drink, including alcoholic beverages. As I was working I couldn’t join him but said that he could have one for me. Through his non-invasive positive airways pressure ventilation mask he chuckled and his whole chest shook.

He wanted to drink Coca Cola, and to eat ice-cream. I told him to go for it, hey why not make it into an ice-cream soda? It wasn’t going to hurt him, and if he enjoyed it even better.

I’d be keen to know what was the best thing you did today?

Guest Post – Naomi’s Notes – Precious

Part 1

Photo by charlesdeluvio on Unsplash

At school two little six year olds had an argument.  They were both very upset when I called them over to talk to me.

I asked the first one what the problem was.

Pointing at the other girl with a quivering finger she said, amongst sobs, “she called me a F F F FAT BANANA. Why are you laughing?”

“Well,” I said, “are you a banana?”

“No.”

“Are you fat?”

“No.”

“Is it true?”

“No?”

Softly I said to her, “so darling if it were true it would be serious, but it’s not true so it’s funny isn’t it?”

I asked the other girl, “why did you say that?”

“I wanted her to be my friend but she didn’t want to,  so I called her a FAT BANANA…  Naomi,  I really love bananas.”

I smiled and said to her, “darling if you want someone to be your friend, that’s not the way to do it. First you  have to  help them if they need help, be kind to them and laugh at their jokes.   Then they will want to be your friend because they can see that you are a kind and caring  person.” 

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Palace of Care – Que sera, sera

Whatever will be, will be.

He tells me, with a tear in his eye, “She’s my sweetheart.”

She smiles weakly, and her eyes brighten.

He gently kisses her hand in a loving manner.

“No, I am ready.”

“Are you scared?”

“I think I’m dying.”

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Palace of Care – “Thank you for teaching me an important lesson.”

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?

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*Updated* 18/05/16 – Palace of Care/I think therefore I am? -#getjnrbak – Extra, extra read all about it! #pallanz

Hi everyone,

Apologies for the late update, I’ve been clinically busy while working the weekend.

We – Palliverse and the family of “Poppa” and “Junior” are still trying to find a way to make their reunion happen.

With the family’s permission here is a photo from yesterday morning’s ward round:

Shirts

“Aloha” from Saturday morning from two guys who are fashion-forward? Poppa is trying to hold on for Junior.

The link to Poppa and Junior’s Story was shared through the social media by myself, the Palliverse community and the family.

I was pleasantly surprised that the link to the post appeared as a headline on Friday 13th May’s edition of the #hpmglobal paper.li – Thank you very much Jim Cleary!

I was informed by the family that one of NZ’s national papers had contact them and they were interviewed last night.

This resulted in the following story appearing this morning:

Screen Shot 2016-05-15 at 22.20.18

Snapshot of from the New Zealand Herald website – Click here to read the full story.

I’m checking out a few more traditional media leads in order to spread the word further.

I’m also trying to contact sailing clubs as suggested by others’ helpful comments.

Fingers are still crossed.


Update 18/05/16 1700 NZT:

Poppa is still holding on, but is getting mighty fatigued.

Junior is on the mend which is good to hear.

Since the NZ Herald on Sunday story we have received a number of helpful emails.

Apparently another NZ newspaper has shown interest in running our story.

I’ve emailed a number of NZ radio shows, an Australian newspaper, and whatever else that myself and other people can think of. I’ve started writing a letter to Santa Claus, the tooth fairy and others in the Pantheon.

Received by Palliverse today was an email from one of the major shipping companies with a desire to “try to make it happen.” I have passed on the details to the family to make direct contact.

This is the most promising lead so far.

Fingers crossed to the power of 10! Say your prayers folks.