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

Photo by Brian McGowan on Unsplash

“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

Photo by Nick Fewings on Unsplash

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

Photo by Stormseeker on Unsplash

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

Photo by Gayatri Malhotra on Unsplash

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.

I think therefore I am? – The Final Lap

Photo by Stephen Margo on Unsplash

In the approach to the finish line, there is an acceleration. Bad things start happening faster and faster. One physiological insult after another. The body just can’t keep up with the relentless series of assaults. Nature is trying to take someone out. Symptoms that are already present worsen. New symptoms develop and cause more suffering. There is only so much a person can take, no matter how strong a fighter they are. The mind and spirit may still be strong, but the flesh has become weak.

The family urge them to hang on. They are trying their best but there is little to hold on with. They are slipping away from our world. They are dying and there is nothing humans can do to stop it from happening. It is up to higher powers now, it is out of our hands. We can make people more comfortable but we can’t save every life. There’s just too much going on, too much going wrong.

I’m worried that time has become really short. There might only be hours to short days left to live. I’m worried they are suffering, that they are really struggling. We want to make them as comfortable as possible. Medication changes could make them more comfortable. The main side effect is sleepiness. At this stage of things, even if we took away all of the medications they would still be sleepy but would be very distressed. If they are distressed this will make you all distressed.

I’m sorry this is happening. I need you to know what is happening and what is going to happen. I can’t let there be any surprises between us. Yes, please talk amongst yourselves. I’m happy to come back later to discuss this further. I just want you to know that we are looking out for their best interests and that their comfort is our top priority. We’re going to get them through this, we’re going to get you all through this. Please let us know if you need anything.

Palace of Care – Checking In

Photo by Sangharsh Lohakare on Unsplash

“I’m just checking in with you. How are you today?”

“I’m too tired to fight today.”

“Me too, you really made me work hard yesterday.”

“I would really like a massage. Healthcare has under-utilised the benefits of therapeutic massage.”

“I’d agree with that. It is one of the alternative therapies that has been proven to make people feel better. A lot of the Pasifika cultures use massage as part of their healthcare systems.”


“Us humans require physical contact. We don’t hug each other enough.”

His long arms tried to stretch outwards, but they could only move centimetres towards me due to weakness.

My arms went around what felt like a skeleton’s back. Sarcopenia is the medical term for the muscle wasting I felt.

A gentle embrace was shared. He was too weak to hug me tighter. I didn’t want to hurt him.

Followed by a firm handshake, our left hands surrounding each others’ right hands. All four hands shaking together.

The smiles in our eyes met each other. Retinae looked directly at retinae. A human connection was maintained but it was destined to be disconnected soon.

Our kindred bedside manner DNA started to unwind. One strand would come to an end soon, whilst the other would continue on.

He thanked me for the care provided.

I thanked him for his time and for the fun memories of our playing and joking together.

We shared a smile before we waved ‘see you later’ to each other.

Would we ever meet again?

I think therefore I am? – Final Farewells?

Photo by Markus Spiske on Unsplash

Life can be full of uncertainty and the same is true for dying. When will it occur? The doctors don’t really know, they can only give their best guess. The ones who give an exact time are likely out of their depth and answer with false confidence. Three weeks. Three days. Three hours. Medical science is not that exact yet. Maybe someday there will be a test that will tell people exactly how long they have left to live. Not available yet.

Sometimes people will say their goodbyes too soon. They carefully choose their words as it might be the last time they ever see each other again. Could it be the final farewell? Yes, it could be. We’d better say what we really need to say just in case it is the last chance we ever get. A final chance to connect with a loved one. A final chance to heal or to hurt. A final chance to say what a person means to you. A chance to wish them all the best for the future you won’t be a part of. A final chance to share one last rendition of a long-standing private joke. One last hug. At least you had a chance to see them before it was too late. Not everyone makes it in time, which has been particularly painful in these COVID-affected years. So close, but yet so far. So much suffering.

Why do we leave things unsaid until we know a person is dying? Could we have told them the truth earlier when we were both fit and healthy? All of us who live will at some stage die. It could happen to any of us, not everyone gets the chance to say goodbye to the important people in their lives. Sudden deaths can happen without any warning. Accidents happen all of the time through no fault of anyone. What would you regret not telling someone today, if you were to die tomorrow? Death could happen to any one of us, at any time.

If you both can still see each other the next day, consider it a bonus.

Palace of Care – Come Fly With Me

Photo by Max Bender on Unsplash


You are still the pilot Captain.

I will listen to what you want and don’t want.

I’m your navigation system.

I’m here to guide you on your journey.

I’ll point out any areas of turbulence up ahead.

I’m here to identify any dangers in your way.

I’ve guided many people.

I want to make your journey as smooth as possible.

I will deal with any baggage issues you may have.


Captain, you are approaching your final destination.

You have started your descent.

Your fuel tanks are running low.

You went through some turbulence overnight and I am going to make some changes in order to avoid further problems.

I know you are tired so you can keep your seat in the reclined position.

Keep your seatbelt on as the landing might be rough.

We’ll be arriving very soon.

Sit back and relax. If you need anything please let us know.

Thank you for flying with Hospice Airways.

Palace of Care – En Garde!

Photo by Elliot Wilkinson on Unsplash

I hadn’t seen the pirate for two days. What would he be like now? Would he be more unwell? Would he still be able to talk to me? Would we get another chance to share a few laughs?

I knocked on the door and loudly said, “Good morning.”

I peered around the corner and he did look different.

Covering his left eye was a piece of gauze and covering the gauze was a black pirate-style eyepatch which his family had brought him. He looked to have lost weight, it had only been 48 hours since I had last seen him. What was that in his hand?

He was holding onto something with a shiny handle. It had grooves in it to make it more ergonomic and so it would fit in the hand well. The hilt piece was curved both upwards and downwards. A skull and crossbones adorned the hilt. My eyes followed the curve of the blade upwards. He beckoned me towards him with his cutlass, he wanted to fight.

He instructed me to prepare my weapon.

I motioned to one of my trusty assistants who rushed out of the room to bring me my weapon of choice.

Within seconds my bright yellow electric bug zapping tennis racquet was in my hand.

En Garde!

We slashed at each other, in slow motion.

I tried to hit him, he parried my blows.

He tried to hit me, and I dove out of the way.

We kept fighting, neither of us wanting to give in.

Seconds felt like minutes, the minutes felt like hours.

Finally, he feinted left and with a deft flick of his wrist, I was disarmed.

My yellow racquet clattered on the floor. Useless. I was done for.

His sword sliced upwards towards my head, and I was given my second haircut of the New Year.

Following our mighty battle he complained of a sore throat.

My differential diagnosis – sore throat caused by too much laughing.

I wanted to confirm my suspicions and examined his throat.

I asked him to open his mouth.

“Can you say, Ar, Ar, Ar please?”

Palace of Care – Catching Up

Photo by linda wartenweiler on Unsplash

I had double vision last night. The nurses made me an eyepatch.

Did it help?

Yes, it did.

I know you started off as a builder, then you became a doctor. Now you’re a pirate. I’ll ask them to colour your eyepatch black later.


If you wanted, I could prepare a wooden peg leg for you, but I’m not much of a surgeon. I heard on the news that there is a missing parrot flying around, maybe he could help too.

We talked about the surgeon that we both know in common at the last clinic. My son thinks he hasn’t seen him for 51 years.

I last saw him 23 years, four months, 13 days, and four hours ago. He made a strong impression on me.

How was your trip overseas?

It was good until the airline cancelled our return flights. My arms are still tired from swimming home.

Were you affected by the floods?

No, luckily not. I visited a friend of ours and their driveway wall had a brown watermark on it five feet high. They were flooded twice in one week.

I’ve been coughing up mucopurulent sputum. Some antibiotic treatment might be required.

I’m not sure if it would the right thing to do for you. You’ve got a bowel obstruction which is causing bad symptoms, which are likely to get worse. If I successfully treated a possible chest infection I might be prolonging your suffering. That’s something I don’t want to do. But if you really wanted to have antibiotics I would listen to you.

No, I’ll leave it to you to decide. I’m in good hands.

Let me shake your hand. It’s good to see you again.

I enjoyed your visit too.