Palace of Care – Fraternal Triplets

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Our gathered experience and that of other doctors told us that people with her burden of disease would not be expected to still be alive.

When she had been admitted it was thought she might only have days left to live.

She had proven us wrong over and over again in the past weeks.

How was she doing it?

How was she staying alive?

None of us could explain it with our science.

It would be up to experts in other disciplines to explain what was happening. Experts in fields such as survivalism, spirituality, true love, and gamblers who specialised in beating the odds.

It is rare enough for one person to beat the odds once, but for three different women to beat the odds three times, it might’ve been easier to win the lottery.

What did they have in common?

They were loved by their families. They did not want to die. They had life-limiting illnesses which would rob them of time too soon.

They were all mothers, two had children who were on holiday from school, and the other one parented a boy who despite marriage had yet to grow up.

What differences were there?

Two of them had almost died prior to their admission to our inpatient unit.

They all had different pains, the physical aspects which we controlled quickly. If only the non-physical aspects could be controlled as easily.

Two of them had poor appetites but forced themselves to eat. The other one was ravenous but had trouble swallowing.

One of them was too scared to leave her room let alone venture home. The other two enjoyed sunbathing and wanted to spend as much time at home as possible.

Two of them wanted to cling to life for as long as possible. They were willing to do anything to stay alive. The other one had been approved for assisted dying but might or might not go through with it. She just wanted to have the option in case her suffering became intolerable, by her definition.

Two of them held on to hope and celebrated every little victory. The other one had made difficult but practical decisions for the shortened future she had accepted.

One of them had lost her mother many years ago. Another’s mother visited often but disagreed with her use of medications to prolong life. The third mother could not bear to face her daughter’s harsh reality and refused to fly over to meet her.

All three had deteriorated during their admission, making us think they were approaching their end of life. They had all recovered again to some extent, but their overall condition continued to fluctuate wildly.

What was going to happen next?

Impossible to predict, but time would likely declare the outcome for each of the ladies over the next days.

Palace of Care – Three of a Kind

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A severe deterioration had been expected within days of their arrival. A review of their medical records pointed towards a poor prognosis. There didn’t seem to be much time left. We tried our best to prepare the patients and their families for imminent death. A few days passed and none of them died. Maybe it was good control of their symptoms. It could’ve been the less stressful environment of the hospice inpatient unit. Was it access to fresh air? The better food? Flexible visiting hours and the ability for family members to stay overnight in relative comfort. Something kept them alive. None of them wanted to die. They all had too much to live for.

Different origin stories. Different walks of life. Different family relationships. Different husbands. Same hospice. Same time. Same staff looking after them.

Deteriorations happened and somehow they recovered. Again and again, they kept beating the odds. Staying alive in a mostly comfortable state. Their loved ones were along for the roller-coaster ride with seatbelts off.

Worsening symptoms required changes to medications. Their worsening overall condition led to discomfort and uncertainty. Was this the start of the final deterioration? Had their bodies decided which path to take? Which destination to go for? How much time was left?

We didn’t know the answers to the questions posed. We had no way of predicting what would happen. Instead, we would monitor their progress over time. Give them time to declare themselves. We would continue caring for them no matter what happened.

I think therefore I am? – Loss of Signal

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He was worried that people couldn’t understand what he needed. His English was limited. Most of our staff’s Chinese was much more limited. Not an uncommon situation. We had previously prepared picture cards for other patients. Simple pictures with words in various languages for symptoms such as pain, breathlessness and nausea. A simple low-tech form of communication. Apps such as Google Translate can help when you are desperate but they are limited. What is required is Google Interpret. Not just the words but interpretation within a cultural context as well. The AIs are not quite there yet, soon come.

In the meantime, we try our best with second languages. A lot of people from China can speak Mandarin which is the government proscribed National Language. Mandarin is often their second language, with the language that their parents used with them at home being their first language.

Mandarin was my first language as a child but once I went to school it was shunted off to the side and English dominated. Many years later I find myself often having to use my now second language, Mandarin, in clinical interactions. Mandarin often is the second language of the person I’m dealing with. We both end up speaking our common second language. It’s not perfect, it’s not 100% fluent for either of us. It does make a difference and is much better than not being able to communicate at all.

The basic human connection. I hear and understand you. You hear and understand me. I can acknowledge your fears and needs. I want to do something about them. We will help you out. We are all here to help you, and to support your family. We’ll get you through this.

Palace of Care – Keeping a Promise

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In our family, our word is our bond. When we say something, we mean it. We promised him we wouldn’t take him back to hospital after his first operation. But we broke the promise because he was too unwell. He had another operation but it didn’t work out, everything fell apart. He was in too much pain. We again promised him not to go back to hospital, but then the blood clot happened. He was in so much pain, and we had to wait so long before the nurses would come to see him. We were all crying, all three of us.

He wants to go home. Even if it is just to die at home. To watch one more football game with his son. That’s all he wanted. To go back to the home that he built for us. We kept asking them to let him go home. Instead, they sent them here to your hospice. This place is nice enough. You people are all nice, but he wants to be at home and spend time with his family.

This morning he’s different. He’s lost all hope. He started saying goodbye to his house. He thinks he’s never going to get back there. He thinks he is going to die here. We had to get out of hospital yesterday. We couldn’t take it any more. We’ve broken our promise to him again, to take him home. I’ve never seen him like this before. What can we do now?

He’s really unwell. I think his bowel is blocked. I think he is dying. He might only have days left to live, but it could be much shorter. We haven’t been able to make him comfortable yet, but time is running out. We have a chance to get him home today. I’d rather he be more comfortable but I’m worried that if we don’t get him home today, he will miss his opportunity. I know how important it is to him and the whole family to get him home. We can make it happen today.

I’m going to stop the blood thinning medication, as it won’t be able to help him any more. I’d much rather he die quickly from a blood clot than die slowly from a bowel obstruction. I know how much he hates vomiting and making a mess. I know you are all still upset about what happened in hospital but I need you to focus on your husband while he is still alive. You can sort out the hospital stuff later. Right now we need to teach you how to give him injections so that you can look after him at home. All right, we need a bit of time to sort out the prescriptions and other stuff. We’re going to make this happen.

Palace of Care – Relentless Pursuit

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It’s one thing after another, after another. I’m not usually like this but over the last months I’ve been worn down. It’s too much to handle. I’m not sure I can go on any longer. I feel so terrible. I don’t think I can take much more. You know what I think is happening? I think I’m dying. I think I’m dying.

You might be right, but you’re not dead yet. You’ve had a lot happen to you in hospital. The operations, the blood clots, the infection. Nature’s been trying to take you out.

I just want to go home. I love my home. I built it myself, with my own two hands. Your place is better than the hospital, but it’s nothing compared to my own home.

Sure. We’ll try our best to get you home as soon as possible. I don’t think you’re ready yet. You only arrived a few hours ago. We need to get to work calming down your pain and nausea. I want you more comfortable before we can get you home. The last thing I want is for you to bounce back and forward between home and here. I would like to prepare you for one good discharge.

Okay, that sounds good. I just had to get out of that hospital. I couldn’t stand it any more. I wanted out so badly. It’s just too much to take. Sobs loudly

We’re going to get you through this, and your family too. We’re going to keep a close eye on you and will treat your symptoms aggressively as we know you want to get back home as soon as possible. Do you have any questions?

Palace of Care – Easter Face/Off

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Easter was about to arrive. At the last minute, I asked my wife and daughter if they had bunny ears I could borrow. They replied yes but they were unable to or me. Just like an Easter Egg a cunning plan was being hatched. Leftover Christmas decorations were examined and a pair of antlers were found. With the addition of cardboard, staples, and a hair tie, bunny ears had been produced out of thin air.

I wore the bunny headband for my whole workday. Anything for a laugh. The patients and their family members bore witness to my madness.

Later in the day, I met the son of one of our patients. He didn’t have clown makeup on and was of a serious demeanour. Facial tattoos adorned both cheeks. A proud member of one of New Zealand’s infamous gangs. We were both in the room because of the patient. Both of us trying to do the best for him. I tried my best not to stare at his facial tattoos. He tried his best not to stare at my bunny ears.

“Happy Easter,” were the first words I said to everyone in the room. Reading the logo tattooed on the son’s cheek I found out he was a member of team blue. I’d had a number of dealings with various members of this gang in the past. He stayed outside of the room but popped his head through the open window. I spoke to his father to see how I could help. Pain, nausea and hiccups were the main issues troubling my patient. He knew he was critically unwell and agreed with my plan to calm down his symptoms. His wife couldn’t keep a straight face as she tried not to laugh at my bunny ears. On that lighter note, I left the room.

A few minutes later our charge nurse had to go back in to talk to the patient’s son. He was smoking cigarettes on the balcony outside of our patient’s room. She asked him politely to stop smoking as it was a health and safety risk as our balcony is wooden and at risk of fire. He put out his cigarette without any comments or fuss. We have rules we have to comply with otherwise we’d be shut down.

We look after all sorts of people from all sorts of backgrounds, and all sorts of families. Even hardened criminals can be vulnerable when their loved ones are dying. They need to be treated with compassion and professional courtesy regardless of our own personal opinions. They want our best professional opinions when they meet us at work.

Palace of Care – Shorts 3

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Will another CT scan make things worse for her?

The scan itself wouldn’t make much difference. But the energy used to go out and get it would not be a good use of the precious time she has left. We only do tests if the results might change our treatment plan.

I wouldn’t recommend a scan as we already know what’s going on.

It would make it more real for us. We know what is happening, without the tests.

But she really wants it.

We can’t request scans ourselves. You’d be better off contacting the Oncologist, to ask his opinion.

How much time does she have left? Will she still be alive in two weeks’ time?

I don’t know. She might still be alive, or she might not last that long.

Is there anything else that we can do to treat her?

No, the Oncologist has tried all available options. If there was anything else available he would have done it already. I’m sorry.

We don’t want to be sitting and waiting. We want to do something.

Her time has become so precious.

Nod.

We will always be trying to do our best for your wife. And sometimes that might mean saying no to things you ask for.

Palace of Care – Shorts 2

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You’ve been very unwell.

Nod.

How’s your chest, any pain?

Shake of head.

Do you still have nausea?

It’s pretty bad.

And your breathing?

No good.

How long have you had the hiccups?

Two days.

What did the doctors at the hospital tell you about your condition?

They said it’s no good.

Did they talk to you about time?

They said it was bleak.

Nod. We’re going to work on making you more comfortable. Starting with your nausea and breathing.

Okay.

We’ll see if we can calm things down for you.

Palace of Care – Shorts 1

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I’m sorry for your loss.

Are you sure he’s died? I thought I saw his nose move before.

Let us check. There’s no heartbeat, no breath sounds. No eye reflexes to light. He is dead.

Tears. I can’t believe he’s gone. He was such a good man. A good husband.

A very good man who looked after his family.

The cancer came on so fast. He was often doubled over in pain. It was horrible to see him suffering like that. Then he couldn’t eat. It was awful.

Yes, it was. No more suffering now. He can truly rest.

I thought he could hold on for longer.

He tried to. His mind was strong but his body became too weak. It was too much for him to handle. How long have you been together?

43 years. I’m two years older than him. He wasn’t supposed to die before me. He looked after me so well when I had cancer.

Palace of Care – Level of Detail

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When it comes to being told stuff do you want to know the full details?

Nod.

My colleague said that you want us to be straight up with you, is that right?

Nod.

What did the doctors at the hospital tell you?

They said it was pretty bad.

Yeah. What happens with Leukaemia is that one type of abnormal blood cell takes over the bone marrow. The bone marrow is your body’s factory, it makes all the blood cells. The red blood cells carry oxygen around. The white blood cells fight infection and the platelets stop bleeding. The leukaemia is stopping all of these blood cells from being made. This is really dangerous as your immune system can’t work any more, and any infection is dangerous. You are at risk of bleeding. The leukaemia cells cram up your blood vessels and they can block them off which would cause painful areas to appear.

Nods slowly.

Did they give you a timeframe?

Shrug.

Would you like me to talk about your time frame?

Nod.

I’m not sure how much time you have left. It could possibly be only days to short weeks. Things could worsen quickly and then you might only have hours to days left.

Oh.

We want you to know that we are prepared for what usually might occur in your kind of situation. If you need emergency treatments we want them to be available at any time.

Nod.

I’m sorry to have to give you bad news. If you still have important things you need to sort out, it’s better to do it now while you are still clear in the head. Better early than too late.

Points to his computer. That’s what I’m doing.

Good. What’s the most important thing to you right now?

Points to his partner. She wraps her arms around his head and cries into his hair. He clutches her arm tightly and cries into her forearm. They hold each other tight and sob loudly.

Let it all out. It needs to come out. You are safe here. We are all here to help you. We will get you through this, both of you.