Palace of Care – Right to Choose

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Empathy – to try to imagine what another person feels like, to put yourself in their shoes, and to try to see things from their point of view.

Compassion – To identify another person’s suffering and to want to do something about it.

Autonomy – The right to make your own choices for yourself.

After years of training and more years of clinical practice, I try my best to practise medicine in a compassionate manner. I try to find out who they are, what drives them as a person, how I can help them in the way they want to be helped.

I try to do my best to inform them of their options, of what I think lies ahead for them. I try my best to take as much stress out of their individual and familial situations. I draw upon my years of experience and up-to-date knowledge. I am not afraid of showing that I care for them and I really want to help them out.

On occasion, they will reject my best-laid plans. They will resist my best attempts to sell them my product. They will not want what I have to offer. This is especially difficult when I am sure that my management will likely make them more comfortable, that it will probably lead to alleviation of suffering.

No, thanks.

Inside me a voice starts to talk – “What do you mean no? You can’t be thinking straight. I’m pretty sure I can make you more comfortable. Can you give it at least a try? I just want you to try something which I think has a good chance of helping you.”

Get out of the way son….

It is hard when someone chooses a path that will lead to more suffering, but it is their choice to make. Their right to do what they want at the end of their life. Just as it has been their right to choose what happened during the rest of their life, why does that have to change because they are dying?

It is hard to bear witness to someone else’s suffering when they don’t want to take the treatments we have to offer. I promise people that I will listen to what they want or don’t want and will be guided by them. I have to keep my promise. They have to do what is right for them and their family.

As health care practitioners we are only involved for a brief period of time. Our patients and their families have to live with the decisions they make for the rest of their lives. Generations of a family can be affected by the choices made. They have to do the right thing for themselves and we need to give them the opportunity to do so.

Palace of Care – Respite

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After the emotionally heavy meeting with the doctors, they needed something to balance things out. There had been so much information, so much disappointment. They needed something to take their minds off the grim reality.

Friends visited and brought their little children. “Uncle we want to ride on the train.” The tiny children got on board the footrests of the power chair. “Choo, Choo, Choo, Choo, Choo, Choo, Choo, Choo around the room.” Great big smiles on little faces. He had a few minutes of fun with their friends’ little kids.

A guitar was brought out and the room was filled with music. His favourite song was played and he sang along. Heart-breaking words sung from the soul. Hanging out with their friends was better than any medicines or treatments the doctors provided. A short break, smiles, laughter, and stories shared. Food shared. Love shared.

The smile said it all. Everyone felt better after a dose of normality. Hanging out with their besties and having some fun. Playing together across three generations.

Guest Post – PRR – THE IMPORTANCE OF GOOD FRIENDS

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We all have friends, but these relationships can be helpful or harmful for ourselves and others. They can give us strength, joy and happiness or they can cause anger, disappointment and pain – they can lead us on a positive or a negative path. Since the people we associate with can have a great effect on us, it is important to be aware and mindful of these relationships.

I think the main purpose of a good friendship should be to support and help each other, to inspire one another to become better. We can do this through conversation, discussion and advice, but the best way is by example. If we are kind, honest and compassionate, then that will influence those around us in a positive way. It even improves our physical appearance, I’m serious! For example, angry people look quite ugly, don’t they? But people who are kind, gentle and well-mannered have a beauty that is independent from their size, age or skin colour.

So, how do we choose friends or decide which ones to associate with? It really depends on our own capacity. We have to be honest with ourselves here. Ask yourself: Am I someone who is influenced easily? Someone who always wants to please or impress others and who can’t say no? In this case you need a good stable friend. Someone who will support you in a positive way and who will not lead you on a wrong path. We call this a virtuous friend. If you are strong, stable and self-confident, you could have friends who might be weaker. Then you can help and support them to become better, in which case you are the virtuous friend for them.

But being kind doesn’t mean being a fool. If someone is continuously using you for selfish reasons, if they are cheating or harming you, or bringing a lot of negativity into your life, then you have to be stable and stand your ground. But not many people can help those who are always negative without being harmed themselves. Therefore it is totally understandable and even advisable to avoid the company of such negative people, as they will only drag you down.

Also there is an important thing we have to understand, which is we cannot control people. If someone doesn’t act the way we want, or chooses a different path than ours, we may have to keep our distance or eventually let go. As the saying goes, everyone’s path is theirs alone, we may walk it with them, but we can’t walk it for them.

Friendships do not necessarily have to be life-long commitments. Sometimes it’s good to walk together through life just for a while. A short but good friendship can teach us great things. Even the bad ending of a friendship can teach us many things. We can learn about impermanence and our own mistakes and flaws. Also we can get the opportunity to practice forgiveness and letting go.

Sometimes we want to change people according to our own ideas. But what may be good for us is not always good for others. We have to stay open minded and try to understand other people’s circumstances which may be very different from ours. We should not be possessive but give each other space to live their lives. The more you mature in a friendship, the less you will have to stick to each other as if you were glued together. You will know the times when you need each other and the times when you don’t. A bit of distance or some silence won’t break a good friendship but can actually make it more stable and keep things interesting.

In summary, try to make your friendships something that benefits you both, something that gives you and your friends some relief from the struggles of daily life and helps you to grow, become stronger and better. Give each other support and joy, and don’t forget, have fun!

Palace of Care – At Any Time

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“Good morning, I’m the specialist here. What’s your name? This is your daughter. How old is she?”

“She’s eight.”

“You’ve all had a rough night.”

“Yeah, every time they turn him he has bad pain.”

“There’s been a lot of changes over a short time.”

“Things have been happening too fast over the last weeks.”

“We need to make some changes to make him more comfortable. It would be better for him to have a catheter, then he won’t get wet and we won’t need to change his pads so often.”

“Okay, let’s do it. His breathing has changed, is it a sign that things are getting worse?”

“Yes, everything is getting worse. His body is so unwell that it can’t control his breathing anymore. His breathing gets quicker, then it slows down, and then there are gaps. As he becomes more unwell the gaps become longer and longer. His hands and feet will start to feel cold as his circulation worsens.”

“How much time do you think is left? Should I call the rest of the family in? They visited last night.”

“It might just be hours to short days left, but he could have much less time if the changes continue happening faster. He could go at any time. It’s a good idea to call the rest of the family in.”

“We’re going to change the medications to control the pain better. Since I’m already gowned up I’ll put in the catheter now. I’ll ask my team to bring the equipment in.”

“Okay, I’m going to step out to make some phone calls.”

“Hey man, I’m going to pop in a catheter to catch your urine, it’ll keep you nice and dry. Then we won’t have to change you as much which won’t be as painful. We’ll keep a close eye on your wife and daughter. Your daughter painted something nice for you, looks like a fairy with a magic wand with a star on it, in purple. The words say I love you Dad.”

“I’m just going to check the pulse on your neck. Hmm, I can’t find it. I’m going to listen to your heart and lungs now. I need to shine a light in your eye. Same on the other side.”

“What’s happened?”

“I’m very sorry for your loss.”

“Mummy, why isn’t Daddy breathing?”

“I’m sorry your Dad has died. He was trying his best to hold on for you, but the illness has been too much for him to handle. Now he doesn’t have any pain and he is heading up to heaven. He’ll still be keeping an eye on you and will be able to hear what you say to him.”

Tears were sniffed back around the room.

Palace of Care – Five Sides of a Story

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The breathing pattern only started changing half an hour ago.

His breathing became faster, then it slowed right down, just like what you told us would happen yesterday.

He only start having gaps half an hour ago.

His hands were cold before, but they’ve warmed up again.

Is this what happens as people approach the end?

That’s what is happening right?

Yeah, I thought so.

Everything shuts down.

His feet have been fine since they changed the bed to the extended version.

He’s always liked having the sheets tucked over his feet.

Makes him feel cosier.


Yeah Dad, your eldest is just over there on the phone sorting stuff out.

Looking after everyone around her.

Being in charge is her natural state.

She got all that from you Dad.

You can hear her on the phone.

She’s always on the phone.

Sorting people out.

That’s what she’s good at, just like you, looking after everyone.


I thought he was going to die last night. I could tell he was warming up.

That’s what happened with my Mum.

I thought, this is it, he’s about to die.

A good father to our children and the best grandfather for their children.

Last night I kissed him for the first time in decades. You know we’d been apart from each other for many years.

I really thought he was going to die last night.

I think he’s hanging on for another kiss and maybe even a cuddle. Who knows he might just get one.


Dad, it’s me.

I’m on my way in, but you don’t have to wait for me.

You just do what you need to Dad.

It’s okay, you just do what you need to. I’ll be okay.

I love you Dad

Hey it’s me again.


I’ve just got to check a few things.

Just having a listen to your heart and lungs.

Feeling for your pulse.

I need to open your eye and shine this light in.

And the same on the other side.

Okay, that’s all done, I’ll just tuck you in again.

Rest in peace.

Safe journey.

Everyone, I’m very sorry for your loss.

Palace of Care – A Life Together/Apart

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Harsh life stuff happened and they had to part. Too many angry words exchanged when under the influence had driven them apart. It had taken him a while to realise that and by then it was too late to reconcile.

Instead, a friendship developed as they continued to parent and co-grandparent, together but at a distance. They were still a family but they no longer lived under just one roof.

With earnest intentions they made it work throughout the years. He had always been strong and active. Determined to leave his mark on the world. To grow good young people into good citizens was his life’s purpose both professionally and at home.

The quality of the family relationship was something he was proud of, and when he needed them the most, they moved into his home. As he felt weaker and more tired they were there for him. His children and his ex came back to care for him. The next generation came to visit as well. He was proud of them all, happy they had pursued university education. Most of them had completed degrees or were well into their studies.

It was confusing for his children. Over the past weeks, he had needed to sleep more. He spent more and more time in bed. The trusted family doctor thought it was due to the illness in his digestive system. Something that shouldn’t have been there having grown in a painful and bloody manner. It had sapped his strength and drained away his previously abundant energy.

He had always been good for his age. When he was young he was tall for his age. When he was older he was strong for his age. Now he felt his age. All seven decades of his life had caught up with him over the past fortnight. He was still a big man but he had been scarily losing weight.

His mind started playing tricks with him. It was like he had turned up for Maths class with only his Geography equipment. Everything didn’t fit, he felt like he didn’t belong there. When was he? Even that was becoming less clear.

“What day is it? Why are they wanting me to leave? Have I done something wrong? It’s my house. You can’t take me out of my own home. What are you going to do with me? I don’t like the way you are looking at me. Leave me alone. Go away. I need to be at school. I need to be in charge.”

Palace of Care – Whoa Part 2

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I was surprised that a benzodiazepine subcutaneous infusion had not been started. Despite three anti-seizure medications being used, the seizures continued.

I was surprised to receive the referral for a hospice inpatient admission as I thought the patient would’ve died a week ago.

My team was surprised that the patient could be easily roused. He had been talking to his wife and had been eating small amounts of food.

The admitting doctor was surprised when the patient said, “I see another man in the room.”

“Is it someone you know?”

“Yes, it’s Robert.”

The doctor had to pick his jaw off the floor.

Someone named Robert had died in the same room, on the same bed, only days ago.

We were even more surprised when the patient’s wife said that the late Robert had been her husband’s good friend. They had worked together for many years and had spent a lot of time with each other. When we heard this chills ran down our spines.

The idea that Robert had visited brought comfort to the patient and his wife.

Our patient joined his friend Robert on the other side only days later.

Palace of Care – Whoa Part 1

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It was a day like any other. He woke up and was helped by the staff out of bed. Breakfast was served, it was the usual porridge, toast and jam. Finished off with a nice cup of tea. The next part of the routine involved having a shower which would take half an hour. Nothing out of the normal at all. His wife would be coming to visit for morning tea, they would read the paper together. See what was going on in the world. The same routine they had followed over many months.

Everything changed when his hand started twitching. You had to really look to notice it, and it would be gone within seconds. When this happened his face looked as if all expression had been wiped away by a whiteboard eraser. Blank. More of these episodes occurred but only some were noticed by the busy care home staff. One registered nurse supervising the care of 20 to 40 patients was the norm for the industry. In recent months it was up to 60 patients, and the staff had trouble attending to their residents’ routine care, let alone anything out of the ordinary.

The care assistant noticed the patient’s body stiffening, his right arm clenched too tight to not be painful, a pained expression on his otherwise blank face. He did not respond to voice. The arm clenching lasted for a minute and was followed by violent shaking of his right arm and leg. The bedsheets became wet. The jerks lasted for two minutes at which point the patient awoke. He was disorientated and had no memory of what had happened. The on-call doctor had been called to review the patient, but would not be available until the afternoon. Whilst awaiting the doctor’s visit two further seizures were witnessed and the patient was sent to the hospital.

What followed were long weeks of assessments by many different specialist doctors. Many scans and invasive procedures looked for a cause for the seizures. Treatments were started to try to control the seizures. One medication was started, then another, and another but the seizures persisted, as the patient’s consciousness levels desisted. The local experts were called in and gave their opinions. The brain scans revealed worsening of a ‘benign’ brain tumour – benign meaning not spreading but as we saw in this case, not a benign outcome. Despite all efforts, the seizures and worsening consciousness levels worsened.

Serious conversations about end-of-life were held and it was decided to keep him comfortable as none of the treatments had worked. They had tube-fed him but he kept pulling out the uncomfortable tube which went through his nostril into his stomach. Palliative care advice was sought and an infusion was started to replace medications that could no longer be given to him including the three anti-seizure medications in combination.

Finally, an infusion was started and controlled the seizures. The hospital teams expected the patient would die soon. Everyone was surprised when he woke up and talked for the first time in weeks.

Palace of Care – Struggle

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“You’re really breathless.”

“Yeah. I’m. Trying. To. Calm. Down.”

“Hard to swallow too?”

Nod.

“You’re working hard to breathe. You’re having to shrug your shoulders up.”

“Yeah, Mum’s like that in the morning. She’s better in the afternoon.”

“I’m seeing quite a difference in Mum since I last saw you both a few days ago. I’m worried about her. I think we need to put a hold on the discharge plan. We need to calm things down first.”

“Okay.”

“Are you okay staying with us a bit longer?”

Nod. “I. Love. This. Place.”

“We’ll see how you go, one day at a time. If things become stable then we can talk about going home again. If things get worse, it might be better to stay here.”

Nod.

“No matter what happens we want to get you more comfortable, and let your daughter have a bit more rest.”

“Thanks. Mike.”

“You’re welcome.”

Palace of Care – ZZZZZ

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“How was your sleep last night?”

“It’s the best sleep I’ve had for ten years.”

“Really? Even better than before you became sick?”

“Yeah, I’ve had trouble sleeping for a long time. It got much worse since I became sick.”

“You’ve had trouble falling asleep?”

“Yeah, that’s when I panic, at bedtime. I worry about not being able to fall asleep. Then my breathing gets worse too.”

“Your breathing wakes you up?”

“Yeah, I only sleep for ten minutes to an hour. I wake up thinking it is already 5.30 a.m. Then I see it is only 1.30 a.m.”

“The nights must be long.”

“Yeah, but the last few nights have been better.”

“Since you started the medications?”

“Yeah, I think it is helping.”

“How about the panic attacks?”

“I still have some, but not as many, and not as bad as before.”

“That’s good, I’m going to adjust the medication a bit higher.”

“Okay, I am feeling much better than when I came in. Thanks, Doctor.”

“I’m glad you are more comfortable. We’ll take things one day at a time.”

“That’s good, I feel safe here in the hospice.”