Palace of Care – Apology

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“Ma’am if I had known that your husband would die within three days I wouldn’t have sent him anywhere. I would’ve kept him in hospice and looked after him. I’m sorry we decided to transfer him as we thought he still had weeks left to live.”

“It was hard to understand after all he’d done for hospice.”

“I am so sorry, I wish I could’ve known exactly how long he had left. We could only make the best decision we could with the information we had at the time.”

“We found a place for him and they admitted him into the hospital section. They didn’t have a bed for him, only a mattress on the floor. He went in on Friday, and he died on Monday, still on the floor. A horrible place. I’m not surprised they are not doing well.”

“I’m very sorry.”

“It’s not your fault.”

“He was a lovely man. During his first admission, I thanked him for what he had done for hospice.”

“He was the loveliest man. He wanted to help out our community.”

“He certainly did that. Thank you for your ongoing support over the many years.”

Palace of Care – Be Prepared

We didn’t want him to have any surprises.

We thought his wife was dying and we needed to prepare him.

We weren’t the only ones who had done this.

We heard the Oncologist had told them she would only have three months left to live, but that had been five months ago.

We thought she would die six weeks ago when her mind became less clear, so we prepared her husband for death within days. The same afternoon she went out shopping for furniture.

We thought she would die four weeks ago, again her mind had become less clear, so we prepared her husband for death within days. The next day she went out shopping for clothes for the children.

Two weeks ago she thought she was about to die, and we agreed. She fell asleep and we thought she wouldn’t be waking up again. Again we prepared her husband for death within days. Two days later she woke up and wanted to eat something.

At the end of last week, she thought she was about to die, and asked her husband to bring the children in. We thought this time she had to be right and prepared for her death. Somehow she carried on but became less conscious over the rest of the week.

Her husband had thought he had prepared himself and the children as well as he could.

He thought she was sleeping, but the nurses who came in for the routine check and bed turn found that she had died.

Everyone had been prepared for her death but when it happened it still hit hard. The brains were ready but the emotional hearts are always slower.

For almost six months we had worked on connecting with our patient in order to help her. We had listened, negotiated and flexed in order to earn her trust. The sudden disconnection took us all by surprise as the strong one had finally completed her long final journey. Off to a better place with no more suffering.

Rest in peace Dear Patient. Safe travels.

Back to plain boring fingernails.

Palace of Care – Yellow Fever

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She had told her family about my promise to paint my fingernails to match hers. She had painted her nails to match my bright yellow scrubs. When I examined her fingers the nails were of many different colours. Some were yellow, others were black, pink, and red, all of them nicely painted. She showed her nails and she made us all laugh. This included both staff and her own family. I joked about needing help with nail-painting supplies, as I didn’t usually paint my nails. If I was going to do so then I might as well do my toenails. I shared with our audience that my yellow nails would go down well at the Brazilian Jiu-Jitsu club I belong to. We all shared some more laughs before we came to the serious part of the family meeting.

I provided a recap of what had happened since our patient was admitted. She arrived with terrible pain, nausea and constipation. These symptoms were controlled with adjustments in medication doses over the first week. Well-controlled pain came at a cost. Our patient became confused at times. We had to make dose changes but we wanted to persevere and bring down the pain levels as much as possible.

Overall the pain and nausea improved but the confusion episodes worsened. We tried to prevent further episodes to no avail. I talked about the ongoing changes in her situation. Old problems became worse while new problems developed. We were trying to play catch up with a disease process that wouldn’t stay still. She had been having ups and downs due to medication effects but mostly due to worsening cancer.

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I think therefore I am? – Final Call

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How can I tell when someone is about to die? I have had practice, especially over the 15 years I have worked full-time in palliative care. It is not so much a science as an art. You try to find evidence to prove your diagnosis. A person has become less active. They need to rest or sleep more. They have become less mobile. They are eating less. They are losing weight. They are losing their interests. They are engaging less with the world around them. This might be what we see in the months preceding death.

In the weeks all of the above continues, and there is an overall diminishing of a person. They may be physically shrinking before your eyes. Cheek and other facial bones become more prominent. Their movements may slow down. Movement of limbs, movements of bowels. The body’s functional ability becomes impaired. This could lead to loss of balance and falls. Falls could lead to minor injuries like skin tears or bruises, or major injuries such as broken bones. The appetite worsens even more. Sense of taste and smell may fade, as the body starts to fade away.

I often talk about the spark leaving people’s eyes. In Māori, they talk about the Mauri or life force of a person. Which could be a synonym, maybe spirit or soul could also fit. Mojo could be another. The sign of an energised being, a sign that life is still there to be lived. No matter how physically frail a body may become the spark can hang in there for a while. It can be hard to describe exactly what it is.

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Palace of Care – What’s Happening?

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“What’s going on with the breathing? I counted a five second pause. I thought that was it. Then the breathing started up again. It’s been happening all night.”

“When you are very unwell the breathing control centres don’t work right. The breathing will speed up, then it will slow down. There will be gaps in the breathing, and then it starts up again. As a person becomes more unwell the gaps become longer and longer.”

“Why have the hands become cold?”

“As a person dies their organs don’t function as well. The blood circulation fails, that’s why the hands and feet can become cold. It’s like a light on a dimmer switch, the light of the body becomes dimmer and dimmer as it deteriorates.”

“We talk but we get no response. The last time they responded, it was all confused.”

“As a person dies their thinking becomes less clear, and they become sleepier. Nature or a higher power is trying to protect the person going through the dying process. So they don’t have the full 3D/HD experience, as it might not feel so pleasant. Keep on talking to them, they may not be able to respond, but hearing your voices will provide comfort. Hearing that the family are looking after each other will provide relief.”

“How long have they got left?”

“ I’m not sure, but a rule of thumb we use is, if changes are occurring over months, they might have months left. If changes occur over weeks, it could be weeks left. At the moment changes are occurring over hours, so there might be only hours to short days left. They are so unwell that they could actually die at anytime.”

“Will you let us know if you see signs of death about to happen?”

“We will try our best, but we don’t always get any warnings. I know you are all trying to be here at all times but I want you to know that some people will sneak away when there is no-one in the room. I’ve seen it happen too often to discount it as something that happens. No matter how long they’ve got left we are going to do our best to keep them comfortable. We’re going to get you all through this.”

Palace of Care – Prognostication Scanner

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One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings. 

Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.

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Palace of Care – I’ve got a question Doc

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I need to ask you a question about Dad.

Sure, go for it.

You know that Dad missed my wedding last weekend because he was too unwell?

Yeah.

Well, we had planned to have our honeymoon right after the wedding. We’re supposed to take off tomorrow.

How long will you be away for?

Five days, we are due back Wednesday. I’m not sure what to do.

I’m worried about your Dad, and I’m unsure if he will still be alive on Wednesday.

I can postpone my honeymoon, my wife and I can go at some other time, but this is my last chance to be with my Dad.

You’ve made the right choice, we’re going to get your Dad through this and the rest of your family too.

Thanks Doc.

Hey that’s what we’re here for, please take care.

Palace of Care – The End of the Race

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She had always been a strong lady, throughout her whole life. She may have done things slowly but always in a methodical fashion, and if it was done by her, it was done well. As it was in life, so it was in death.

Anyone else would likely have died a week ago, but she was holding on as she had too much to live for. She worried about her husband, physically he still looked like he had for the past twenty years but his ability to think and remember had started fading years ago. She had looked after him well, and had to increase her efforts since the dementia started to steal him away from her. He was still polite and kindly, but at times he would forget who she was, and would forget who he was too.

She had been told that the grandchildren were on their way back from overseas, she wasn’t able to acknowledge this. She was mostly unconscious, but would occasionally stir when being turned or when fed small spoonfuls of water. This was done with a special teaspoon which had a hollow mesh structure and the handle served as a straw.

The middle grandchild would arrive that evening, and she would do her best to hold on despite apnoeas of up to 15 seconds. The grandchild arrived and required Rapid Antigen Testing before we would let them in, a negative test would mean it was okay. The swab was taken and processed, the timer was set, 15 minutes before the test could be verified. Time drags on when you are waiting for something.

Tick, tock, tick tock.

A negative RAT test allowed the grandchild to reunite with their grandmother.

Phew….

Our patient died six hours after her reunion with her grandchild.

The eldest grandchild was still making their way back from half the world away and arrived 14 hours after our patient’s death.

RIP Strong Little Queen

Palace of Care – Race Against Time

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I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.

She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.

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Palace of Care – The Art of Prognostication

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End-stage COPD (chronic obstructive pulmonary disease) due to lung damage from smoking had been his problem for the past decade. Lung tissue destroyed by toxic exposure leading to severe shortness of breath. He needed oxygen at all times, and could only at best mobilise short distances. Life had become a struggle, and just when he thought things couldn’t worsen, they did.

He was in really bad shape when he came in on Friday, he was only semi-conscious and could not respond to my questions. His wife and son, who were his main caregivers at home, looked exhausted. He looked terrible, blue lips and tongue, breathing rapidly, short, shallow breaths, with only a small amount of chest movement. I had not seen him so unwell before, which really concerned me.

Using all my clinical skills and experience, I really thought that he was dying, that he would die within the next hours. That he might last only days, and might never fully wake up again. I gently conveyed this news to the family. That I thought this might be the end of his life. They took it well, he had been unwell a long time, and had been close to death many times in the past.

I prepared his medication chart for end of life care. I wanted to cover the five common symptoms that occur at the end of life; pain, breathlessness, nausea, agitation/confusion, respiratory secretions. Anticipatory prescribing for a dying person is done, in order to cover the things that occur commonly during their last hours to days of life. Aiming for comfort more than anything else, we started him on syringe driver medications. This would mean a continuous infusion of symptom control medications to keep him calm and comfortable for whatever time was left. I left that Friday afternoon truly thinking that I would not see my patient alive when I returned after the weekend.

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