Tag Archives: uncertainty

Palace of Care – No Warning

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I’m very sorry for your loss. If I had known how little time she had left I would’ve told you. We operate on a ‘No Surprises’ policy. We want people to know what is going on as they might have important stuff they need to do. That’s why we kept on bringing up heading South. We were worried that time was becoming shorter, but we didn’t think it would be this short.

The Oncologist had said that with treatment she might live for two years, maybe five to ten years, and some people have lived for 20 years. It was a shock this morning when you told us she might only have weeks to months left to live. We cried together this afternoon, then we were both so tired and fell asleep. Dinner had come and she was still asleep. I tried to wake her up but her breathing was strange. It sounded like how my mother’s breathing sounded before she died. That’s when I panicked and called the nurses. They came in to see her and stopped the medication pumps. A few minutes later and she was gone.

I’m so sorry. We always try to warn people when the end is near, but sometimes we don’t get any warning. We were still trying to get her comfortable so that she could travel down South as soon as possible. I’m not sure exactly what caused her death. I think it was her cancer getting much worse. The medication side effects might have had something to do with it, but likely only a small part. The only way we can find out for sure is to arrange for an autopsy, that would tell us what happened. We can make a request if that is something you and the family would want.

No, we don’t want anything more to happen to her. We didn’t know the cancer was so strong.

Yes it was too aggressive. It caused too much pain and distress. It was too much for anyone to handle. She kept on fighting it but it was too much. No more suffering, she was exhausted.

Thank you for looking after her. She really loved it here. She trusted you guys.

I wish we could’ve done more for her. We wanted to get her back down South.

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.

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 – Checking In

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“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.”

Nod.

“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? – Waiting

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Some people feel like they are all packed up and ready to go. They are already at the bus stop waiting for the bus to come and pick them up. They don’t have a guide as to when the bus will be coming. They ask us when the bus is coming, and we say we’re not sure but likely within hours to days. This can be frustrating for the questioner. They want to know how long they have to wait. They would prefer to be gone already. Their current location is no longer joyful, in fact, it may have become a place of suffering. They are ready to move on to the next destination. The preparation for the journey may have been difficult. They have had to pay more than they wanted to for the ticket.

The ones who have been used to being in control the most may be the most frustrated at their lack of control. They feel like they are no longer in the driver’s seat any more. They are at the whim of another force greater than they are. The sense of powerlessness and the inability to choose their own path must be hard to bear. They repeatedly ask when the bus will be coming.

Maybe they are waiting at the bus stop, but it is a train that is actually coming to pick them up. They are at the wrong station.

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 – The Band Plays On

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My little coronavirus rock band continue their tour of my body. They wrapped up their sold-out concert in my throat and the music was so loud my ears are still stinging. Today’s destination was my lumbar spine and they played their achy breaky music with gusto. No matter how often I stretched throughout the day the music of the band drowned out all other signals.

I have to be honest I am sick of all the merchandise the band brings along to each venue they play at. The congested stands of my nasal sinuses couldn’t stand the pressure any longer. The burning man set up in my throat yesterday is still smouldering and ready to reignite at a moment’s notice. The worn-out muscle fibres evidence that this band of players have worn out their welcome.

The uncertainty of each day of illness. Will I feel better when I wake up again? Will I be in less pain than yesterday? These are questions I am considering each day and are they similar to what my patients must ask themselves? I’ve only been unwell for a few days but my compassion for those who suffer from chronic illnesses is growing.

Maybe tomorrow the band will head down to my feet and then it will be my pleasure to kick them out of my body. There will be no request for an encore.

Palace of Care – Welcome to Hospice – Part 1

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When the hospice nurse had suggested an admission into hospice she really had to think about it. Did this mean that she was about to die? Was that why she had suggested I go in, because they thought that I was about to die? They denied it, and said that they wanted me to go in to help control my breathing and distress. I asked my family and they were scared as well, but knew that I needed help. We decided to give them a go, but man we were still nervous about it.

Turns out we didn’t have to worry, the people were friendly and nothing seemed too difficult. The doctors and nurses started working on my breathlessness, and by the next morning I started to feel better. I met a number of the team members before I headed home a few days later. We had been worried that when you’re admitted into hospice that there is only one way out, being wheeled out by the undertaker. When it was time for me to go home, I walked out the front door.

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Palliverse’s Greatest Hits from Oct 2014 – #getjakbak revisited – Part 3

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I didn’t sleep well that night because of a mixture of emotions; excitement, fear of failure, what if he died on the way over? Would he be comfortable? How is it going to go on the flight? Will I be able to reassemble the stretcher myself? What is going to happen to his abdominal abscess at cruising altitude? Fluid expands at lower atmospheric pressure, that could cause more pain and possibly rupture. What if he needs to poo?

A fitful sleep followed by an early start to the next morning, I woke up at 0430 as I had to be at the hospice by 0530 for a 0600 ambulance departure. I arrived at the hospice for last minute preparations. Medications had been prepared for the flight and I had plenty of pain relief, nausea relief and distress relief medications pre-drawn into labeled syringes.

Okay, everything checked off on the list. Deep breath, I’m as ready to go as I’ll ever be. Hmm, why can’t I stop pacing?

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Palace of Care/I think therefore I am? – #getjnrbak – Time is of the essence

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Since the last update a lot has happened.

The local branch of shipping company Maersk reached out to Palliverse after reading the NZ Herald article from Sunday. Their can do attitude was much appreciated by us all. Thank you very much.

Thanks also to everyone who has made suggestions, offered advice and wished us well for this mission. It is heartening that people are taking time out of their busy lives to try to help their fellow man. Be proud of yourselves.

Poppa has become extremely fatigued over the past three days which is a big concern to the hospice team and the family. There’s a possibility that time may be shortening, as Poppa’s condition continues to deteriorate.

There has been some good news – Junior has been improving everyday and has been in touch with his specialist again. His risk of further eye injury is now estimated to be low, and because of the uncertain situation that Poppa is in the decision has been made for Junior and other family members to board the earliest flight to Auckland tomorrow.

Poppa has been informed of the travel plans and is looking forward to seeing Junior tomorrow. Poppa is trying his best to hold on.

Fingers and everything else remain crossed. Prayers are being said by many people on both sides of the Tasman.

Good luck Poppa and Junior – I sincerely hope that you can have your reunion.