Palace of Care – The Contrast.

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The portrait was the first thing that caught my eye when I entered the room. A strongly built olive-skinned young man with a confident smile. His eyes had a mischievous glint as if he was just about to share a joke. Dressed in a well-fitted suit oozing simple elegance. A man in his prime who was enjoying life. He looked like someone with a bright future ahead of him. Happiness personified.

I looked around the room but did not find the man in the picture. On the hospital bed was a small unwell-looking man. His teak-coloured skin was an adverse effect of the many treatments he had received over months. His cheekbones were too obvious, stark evidence of massive weight loss. With great effort, he turned slowly towards me when I introduced myself. The result of too many sleepless nights and what may have felt to him prolonged incarceration in the hospital. The hospital gown was draped around his slender body. A quantity of life-saving infusion ran into a line embedded in his chest. He was lying in bed with suffering etched across his prematurely aged face. Defeat personified.

I was keen to help. I wanted to admit him to my hospice. I outlined a brief escape plan for him. I wanted to help him get home. He kept on breaking eye contact. Was it just shyness or had he heard it all before? His eyes were dull and the only glimpse of a slight spark was seen when I talked about trying to reunite him with his dog. I wanted to make it happen as soon as possible. I thought that his time was running out, that he might only have mere weeks left to live. I wanted to act fast before his condition worsened. I asked him directly, “If you only had a few days left to live, where would you want to be?” “At home.” Home-sickness personified.

Our teams began making arrangements for the transfer. Special training was required for the infusions he was having. We were keen to make it happen.

Palace of Care – Fathers and Sons 3

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Generations of his family came together to join the bedside vigil. Grandchildren who were out of town came home to see the beloved ol’ fella. His cheeky smile was still there to greet them all but with each day his energy levels decreased. He needed to sleep more. His appetite dropped off steadily.

They knew time was short. At the start of the admission, over a week ago, they had been told there might only be days left. Dad kept on proving them wrong. He would still rouse to their voices but had become too weak to talk.

The son came in every day and saw his father melting away. Intellectually he was prepared for the loss of a parent. The scenario had played out in his mind ever since the diagnosis was confirmed. The emotional organs always took much longer to catch up with the thoughts.

How much longer could he go on? He had always been strong, but nobody expected him to still be alive. The hospice staff were just as surprised.

“I’m not sure how long he’s got left. If it was anyone else they probably would’ve died last week. I’m not even going to try to guess. He is getting closer, his breathing is changing, and he has become more agitated. It could be hours to days, but that’s what I told you two days ago. He’s going to do things at his own pace, in his own way, just like he always has.”

The son was on the other side of town when the call came through. He raced back in his powerful car as fast as he could, but he was too late. A lifetime of memories washed over him as tears tracked down his cheeks. He had to put his grief on hold as his assigned role in the family took precedence. Someone had to find a funeral director, organize the memorial service and look after everyone else. Again. He took a deep breath in, sighed, and started making phone calls.

Palace of Care – Fathers and Sons 2

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It had been almost two months since the treatments had stopped. It was the right thing to do as the treatments could not be given in a safe manner. It was deemed too dangerous to continue, thus they were finished. The blood test results were all highlighted in the abnormal hue of red. The organs had stopped working long ago, the treatment had been trying to replace the organ function. It had worked until other more important organs started to dysfunction. The family was informed of this change, his son knew exactly what this would mean. Time was going to be short, no one could say exactly how short, but he expected his father would die soon.

Almost two months later and Dad was still doing okay. He had continued to live his life the way he wanted to, as always on his own terms. He had worked almost twenty years longer than most people would have. A physical job that exhausted men decades younger than him, but one he had done until less than two years ago. He’d beaten the odds once again. How long could he go on like this? In the past few days, it seemed like life had caught up with Dad. It was subtle to start with, with more fatigue than usual, and a smaller appetite. At times Dad didn’t know where he was, but he could soon be reorientated. Then he almost fell over a few times. It was more of a slow-motion slide to the ground. Gravity had seemed to slow down around him, and he slid joint by joint to the floor. Although he had lost a lot of weight he was too heavy for his partner to lift off the floor. This had started happening more and more times. A call for help was made, and a team came to see him at home.

I was told that apart from the near falls, the nurse couldn’t find anything else needing attention. They thought he might only have weeks left to live. They recommended that he go into residential care as he would be harder to look after as he became more unwell. I had a different opinion. I had seen this play out too many times before. When people start falling it is a sign that the end is drawing closer. I thought further deteriorations were about to occur, that there would soon be a crisis. I arranged an admission into our inpatient unit.

On arrival, he was still pretty good. Able to walk in and converse with our staff. There was no discomfort, he was relaxed and happy. He and his partner settled in quickly. Over the weekend the family arrived and spent time with him. His son was glad that Dad had been admitted, and that the family’s distress had been relieved. The doctors said they’d see what happened over the next few days.

Two days later and Dad needed help to get out of bed. His arms and legs had lost their strength overnight. A further deterioration on top of those that had occurred already. Dad was starting to slip off the edge of the cliff. If he continued to descend at that rate, he might only have days left to live. The son came in again to have an important conversation with him. To find out what he knew about his condition.

“It’s pretty shit. I don’t have much time left.”

“Is there anything you still need to do, to sort out?”

“No. I’d like to see my siblings and our family.”

“Okay Dad, I’ll make some arrangements.”

A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.

A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.

Palace of Care – Fathers and Sons 1

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I always say that people can hear us even if they are in a coma. I believe they can hear us even when they appear to be dying. The family in the room wanted him to hold on. His son was on his way from overseas. Due to arrive that evening. I’m not sure how long it had been since they had seen each other. Likely it had been a while as COVID flight restrictions had meant that many families had been separated for much longer than usual. He wanted to see his son. His son was already on the plane somewhere over the Pacific Ocean. Thousands of miles away, 33000 feet up in the air. Everyone was willing the plane to arrive faster.

I wasn’t sure if the son would make it in time to see his father. My patient was in his bed, not able to respond to any of the voices in the room. I counted the pauses in his breathing. 10 seconds, 11 seconds, 12 seconds, Gassssp. The longer the pauses the closer a person is to dying. My best-educated guess was that he only had hours left to live. I knew that his son was still at least seven hours distance away. I didn’t want to scare them but they needed to know of my concerns. No surprises.

“I’m not sure if your Dad can hold on for much longer, I think he might only have hours to go before he dies. He might not be able to see your brother. He will try and hold on for as long as he can, but his body is too weak. He knows that his son is on the way to see him, and he’ll try his very best, but he might not be able to keep on going for so long. There’s nothing I can do to keep him alive. It’s up to a higher power than us humans.”

I spent the next seven hours attending to work tasks. Seeing other patients. Discussing other patients. Writing emails to organize things for patients. Phone calls related to patients. I wondered if my patient would be able to hold on for much longer. I knew he would be trying his best, but he had no reserves left. The cancer had taken away his precious energy. It was removing both quantity and quality of life. It was beyond the control of sheer willpower, no matter how strong the person was. I couldn’t extend his life, no one in the world could, no matter how much money they had. They wouldn’t be able to buy him extra lifetime. I could try to make him more comfortable. I would try to reduce the pain that had been gnawing at his leg for so long. I would try to calm the distress revealed by his furrowed brow. To ease the worries of his gathered family members. I would try my best to make him more comfortable. To look after his family. That’s what I could do. To give him the best chance of seeing his son, or at least to be seen by him again.

Palace of Care – Staying Alive

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Doctor yesterday afternoon when my brother arrived Dad woke up. They were able to talk to each other overnight.

Wow. I was not expecting him to wake up again. I was very worried about him yesterday.

Yes, we were too. We’re happy that he has come back to us again.

That’s good. He was troubled by pain again overnight. I need to increase his pain relief again.

We’ve been keeping his mouth moist, and he has swallowed some coconut water. Is that okay?

That’s okay but make sure that he is fully alert, otherwise, he may choke.

Okay, see this is how we have been giving him the fluid.

Hmm, he is swallowing okay. You can keep going.

Good, we were worried that he was starving. We want to give him more fluids. Could we give him an IV line and glucose?

It’s best to give him fluids by mouth, any IV infusions would still be too much for his body to handle.

They’ll cause uncomfortable swelling?

Yes, that’s right, and it might make his breathing worse. Is there anything else you need?

Could you write a letter to support our relatives coming over?

Yes, I will write the letter after I prescribe the medications.

Thanks doctor.

You’re welcome. Let’s take things one day at a time. Please let us know if you need anything.

Palace of Care – Please Keep Him Alive

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I’m very worried about your father, I think he only has a short amount of time left.

The doctor yesterday said he might only have one to two weeks left to live.

That would have been right yesterday, but your father’s condition got worse overnight. He had a lot of pain, agitation and distress. I am worried that he might die possibly within hours to days.

Dying? You think he is dying?

Yes. You’ve noticed his breathing becomes faster, then it slows right down, and then there are gaps in his breathing. This is what we see when people are dying.

Is there anything that you can do to keep him alive? His son is on his way from overseas, he’ll be here by this evening. Can you give him food or fluids?

He’s unable to swallow anything. If we fed him it would make him choke. The safest way to give him fluids is to keep his mouth moist.

Could you put in a line, and give him fluids and nutrition?

We don’t do that as his body is too unwell to cope with food or fluids. Extra fluids could lead to painful swellings, or worsen his breathing. His body wouldn’t be able to digest food even if we put a tube through his nose, down his throat and into his stomach. He wouldn’t be able to digest the food. This might cause vomiting, and could lead to diarrhoea. We don’t want to make his tough situation even worse.

How about Oxygen? Could that help his breathing?

I’m not sure. We can check his oxygen saturation level. If it is low he might get some benefit from having oxygen.

Is there anything else you can do to keep him alive?

We are at the limit of what humans can do, it is now up to higher powers than us. We can make him comfortable though.

Will it help us to wake him up when he is sleeping?

Probably not, he is too unwell. He knows his son is flying over. He will try to hang on. I’m worried that they might not be able to see each other again.

He can hear and understand what you are saying. He will try to respond to you but he probably won’t be able to. We want to look after him well and get him and you all through this.

Thank you, doctor.

You’re welcome. Please take care and rest when you can.

I think therefore I am? – I don’t mind being wrong

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“How long have they got left to live?” This is a question I am asked at least once a week. There is no way I can give a completely accurate answer but I try my best to give an approximate time period. Months to years. Weeks to months. Days to weeks. Hours to days. These are the standard replies I give, for the weather forecast they have asked me for.

Over the years I have had a lot of practice. My educated best guesses have come closer thanks to lived experience. I am often wrong as there are too many things that need to be included in the considerations.

“Should I call the loved ones in?”

Better they come and visit too early, than too late. See them while they are still able to talk and interact.

I don’t know what will happen tomorrow, let alone next week.

I will try to give you as much warning as possible, but sometime I may be caught by surprise myself. The final deterioration may not announce its arrival. It might sneak up on everyone, including the person themselves.

I’ll keep on trying my best, but I don’t mind being wrong when it comes to prognostication.

Palace of Care – Life Goes On

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How would it feel to be told that you are going to die?

That you will not be able to leave the ICU.

That you will not be able to leave the hospital.

That you will never be able to return home.

You receive a call saying that you will die from your illness within three months.

You believe them and prepare for death. You organise your own funeral and your burial plot.

You finally accept your situation, that you are dying.

Then it doesn’t happen.

Again and again and again.

What do you do now?

You’ve beaten the odds over and over. By many weeks, months, and years.

You don’t know what to believe any more. You don’t know who to believe any more.

It could all be taken away at any time. Do you dare to dream? Do you dare to hope?

Somehow through all the disasters you carry on, something keeps you going. Some inner strength. Some kind of fire keeps on burning inside. Some light that refuses to dim. A strong spirit coupled with too much to live for. A fervent wish to meet the next generation. To be part of their life. To grab onto whatever precious bonus periods that life may have to offer.

I am not defeated.

I am courage.

I am will.

I will persist.

I am alive.

Palace of Care – Everyone’s Crying

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This hospice place is nicer than the hospital.

It’s noisy in the hospital. People rush around. They only let me stay a little bit.

What’s going on?

Something is wrong.

Dad’s crying again. Louder this time.

Why are my Uncles and Aunties crying too?

Why is Poppa crying? I’ve never seen him cry before. Nanna is crying too.

Mama, why is everyone crying?

Mama, wake up. Mama. Wake up.

They all look sad. They cry real loud. Like me when I hurt my big toe.

Was it something I did?

Makes me want to cry too.

One of those nice ladies has come in to check on Mama.

They all look different but they all wear blue. Mama called them nurses.

They all are nice to me.

They’re all saying that Mama is gone, but she’s right there in front of me.

Silly grown-ups. Can’t they see she’s still in bed? Dad’s still holding her hand.

Okay, Aunty. I’ll go for a walk with you to the shop.

Hey, there’s a lady dressed like a clown. Clothes. Lots of colours, like a rainbow. The long hair is colourful too. Mama would laugh at the Lady Clown.

Why is there a Clown in the hospice? I want to talk to her.

I think therefore I am? – Choices

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For those of us working in Palliative Care, we must remind ourselves that we are only briefly there in our patients’ lives. We might only appear briefly in the final chapters if it was a book. We have a small part to play in a person’s life as a whole. We provide episodes of care which usually end with the death of our patient. Mostly this is also the end of our relationship with the patient’s loved ones. We make our decisions, offer our suggestions and give our advice before leaving for the day. Our involvement may be as short as hours to days, sometimes weeks to months, but it is a small period.

The patient and their loved ones have to live with their decisions for the rest of their lives. In the case of the patient, only a short time. For their family much longer. They have to do what is right for them. To make sure they have no regrets. To make sure that everything has been tried to keep someone alive.

Even after 15 years of full-time Palliative Care work it is still hard to step aside and let someone do something that you disagree with. You are confident you can control their severe symptoms, to provide comfort, but the patient and/or family are not wanting to buy what you are selling.

No one likes being rejected. To have their best attempts at helping not accepted. For alternatives to be chosen instead. It is hard to witness suffering and not do anything about it.

I want something else. I want to follow someone else’s recommendations.

I want to help you. I really want to help you. Please let me help you.

No. Thank you. I need to do this. We need to do this.

Don’t take it personally. You hardly even exist in their lives. It’s not about you. It’s about them, and what they want to do with what little remains of their life. They want to call the shots. To take control. Even if the only control they can take is a refusal of treatment. They are making one of the few choices they have left. It’s not about you. It’s about them. What is important to them? What is right for them?

I’ll get out of your way then.

It’s not like that.

Yes, it is. I’m getting in your way. I’m holding you up from doing what you need to do. You know where to find me if you change your mind.

It was important to keep on side with them, to show that we would listen and allow them to take part in the decision-making. That we meant what we said. You are the driver, not me.

Our patient might’ve suffered more than they had to but it was the right thing to do for them and their loved ones. They did what they needed to do. So they could live with their decisions, for the rest of their lives.

Providing patient-centred care is not easy.