Tag Archives: patient choice

Palace of Care – You Are All On My Side

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Photo by Sorin Gheorghita on Unsplash

The hospital palliative care nurse called me to refer a lady in her late 80s who prior to admission had lived independently until she started falling over. It was minor slips with minor injuries, then moderate trips with moderate injuries. In the past week she had a major fall, resulting in life-threatening injuries. Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer. The reason that she had lost her physical balance was that the cancer had invaded her spine, crushing the spinal cord and rendering her lower body weaker and then paralysed. She could no longer move her legs, but unfortunately could feel pain, and in fact her legs had become hypersensitive to pain. The bundle of nerves that make up the spinal cord do not like being pushed on, and scream out in protest.

During her week in hospital she had almost died twice. Each time, somehow she had recovered. Each time she was left devastated that she had recovered. From being fully independent, she had become fully dependent, a situation that she found impossible to tolerate. She had some stern conversations with The Almighty, she was not happy with what he had chosen for her. Her beloved husband had died over 30 years ago and there wasn’t a day that she didn’t think about him. She wished to be at his side again.

She asked the nice hospital palliative care nurse about the assisted dying service that she had heard about. Printed information was provided which was read and digested, with some difficulty as the pain in her legs and bottom still bothered her despite the pain relief she was given. She thought that she would qualify for assisted dying, having met all of the eligibility criteria and still maintaining her decision making capacity. The palliative care nurse said that no-one in the hospital provided the service, but that a referral could be made to the Ministry of Health in order for them to assign a practitioner to her. A process that would usually take two to six weeks to complete. Her ward team made the referral to the national service.

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Palace of Care – Opportunity Cost

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Photo by James Bold on Unsplash

In my misspent youth I studied Economics during high school and into my first year of university. Opportunity Cost is the cost that you incur when you make a choice. Because you have chosen A, you miss out on B, or vice versa.

The New Zealand school ball is an important event in a young lady’s life it is a coming of age event. The proud parents will see their daughter off for her first school ball. This can be a big deal especially for the father. The ball was scheduled to take place in a week’s time. Our patient had his blood tests done as he was looking pale, was fatigued, and slightly short of breath. Symptoms and signs of anaemia, low red blood cells in his body. His counts were dangerously low, and if we didn’t do something about it, he was at risk of dying before the day of the school ball. He really wanted to be there for his daughter, it was his only chance at providing the whole family with this milestone memory. He agreed to our plan of transfusion, a top up to give him the best chance of being there for his daughter.

In the days after the transfusion he was able to walk further without losing his breath, his thinking had sharpened, almost as good as normal. Looking in the mirror his skin tone no longer reminded him of the vampires from the Twilight series that his daughter and her friends all loved. He would make it to the ball, and the whole family was excited about it again. They could proceed with the pre-ball party at home, he would go home for a few hours of leave. A nice dose of normal family life to break up his cancer story if only for a brief respite.

After the weekend the pre-ball photos were shared with us, and they were lovely. The only clue to his illness was that Dad was thin, and looked tired in the photos, otherwise a beautiful New Zealand family celebrating a special night together at home. A snapshot frozen in time, if only the image would stay like that, no changes occurring, no one deteriorating, no brightness fading from their eyes. But that is still life, real life is about the changes that occur with each passing minute, hour, day, week.

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Palace of Care – What’s in a name?

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Photo by Tim Mossholder on Unsplash

She was transferred from hospital into hospice at the end of her life and only had days left to live. End-stage cancer had taken complete control of her body. We were handed over that it was important that we respect her wishes especially when it came to calling her by her proper name. It was a name that she had to fight for, that she had won for herself, but at great cost.

Not everyone understood her wishes. When her relatives came to see her they brought old family photos, and called her by a different name. She looked different in the photos, much younger, and dressed in different clothes. We were all young once. She was becoming less responsive as each day passed and her family talked about someone who sounded different to the patient that we had only a short time to get to know.

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Palace of Care – Saying No – Part 3

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Photo by Christina Deravedisian on Unsplash

He was admitted because of uncontrolled nausea and vomiting. We thought it might be a malignant bowel obstruction but his bowel sounds were normal. He would vomit at least three times a day. Strangely the vomiting didn’t seem to bother him, in fact at times he and his wife seemed happy after he vomited. We weren’t sure of what was causing his nausea and vomiting, his blood tests showed evidence of dehydration, but there was nothing obviously reversible going on to explain his symptoms. He looked unwell and after a few days on our ward he appeared more gaunt. Our attempts at controlling his symptoms were not working, we hadn’t solved the mystery yet, until we noticed the half-filled blue glass bottle on his table. “Keep out of direct sunlight.”

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Guest Post – Naomi’s Notes – Mama

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Photo by dominik hofbauer on Unsplash

Today was shower day. In preparation, I lit the fire and made the room nice and warm,  laid out her clothes so they would be nice and cosy to get into, just like my mother had done countless times over the years for all her children.

After showering, I raced her down the hallway in her wheelchair into the warm room and proceeded to dress her and blow dry her hair.  She was unable to transfer other than to put her arms around my waist and hold onto me as I put her into her favourite chair.

“Well,  now you have to pay me,” I announced.

She looked at me suspiciously until  I said the cost of the shower was two kisses.

She smiled and gave me five kisses and said,  “Oh I have overpaid you.”

“Don’t worry,” I replied, “I have change.”  I kissed her cheek three times;  She laughed just like she used to laugh and then I made her a hot cup of tea.  After the tea she fell asleep in her chair.  She looked exhausted from the effort of showering and slept for an hour.

When people came to visit she would try and sit up and talk with them but after a while she was just so exhausted.  Her kidney function was getting worse.

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Palace of Care – Lockdown Locks and Roadblocks

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Photo by Mirza Babic on Unsplash

You really need a haircut.

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…

But…Go on tell me, I need to know.

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Bedside Lessons – 4. The Father

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Photo by Tim Mossholder on Unsplash

The old Chinese man was admitted with uncontrolled pain and breathing distress. His wife and son doted upon him and were worried about him as he had been rapidly worsening over the past weeks. He had previously had fluid from around his lung drained in hospital the other month, which had helped his breathing. His symptoms were controlled quickly but he still felt exhausted.

Even speaking to him in his native Mandarin Chinese it was difficult to tell what he really wanted. He appeared to know that things were worsening. It was just before New Zealand’s general election, and the End of Life Choice Act 2019 was being considered for enactment via National Referendum. He told me that he had already cast his vote and was in support of having the option of assisted dying. His son quickly told him that even if it was voted in that it could not be accessed until another 12 months.

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