Tag Archives: death

Palace of Care – Everyone’s Crying

Posted on by
Reply
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.

Palace of Care – View from Four Feet

Posted on by
Reply
Photo by Nico Smit on Unsplash

The little boy looked sad. He didn’t say much. Did he actually know what was going on? He had visited hospice many times over the last months. His father would bring the children in after school. It was important to his mother that the children stick to their routines as much as possible. Education was one of the most highly valued things in life for this family.

The staff would print out colouring pages for him to work on. Superheroes were his favourite. He had coloured in Spider-Man pages over the last few visits and the pictures had been stuck to his mother’s room’s wall.

Today he wanted to colour in a picture using his mother’s favourite colour – Yellow. He asked the nurses if they could give him a “Golden Iron Man picture.” The nurses grabbed the activity trolley with art supplies and children’s games. There were some colouring pages but no Iron Man was present.

He went in to see his mother. She looked tired and kept on falling asleep. He knew she was unwell. She had been staying at the hospice for weeks. She used to come home to spend time with the family, but she had not been home for over a week. He missed his mother and the games she would play with them. They were supposed to go for an overseas trip but that had been cancelled. Mum could no longer leave the bed. She was always in pyjamas these days. She used to take them shopping with her. Fun times. It was all so different now.

Their home was different, without mum at home. When would she be coming home? He really missed her. Had he done something to make her not want to come home?

Palace of Care – Dehumidifier

Posted on by
Reply
Photo by Laårk Boshoff on Unsplash

We didn’t know what was keeping him going. He hadn’t eaten anything for ten days. No drinks for days. Somehow he was still producing urine. Where did it come from? His son speculated that he was drawing the water out of the room’s atmosphere. “Dad’s become a dehumidifier.”

He had outlived many doctors’ prognostication attempts, including my own. “Anyone else would’ve died a week ago. He’s not anyone else he’s stronger than most people.” Somehow he had stayed alive with his metastatic cancer for four years. He had received multiple treatments over the years. They had kept him alive, but the last three months had been a struggle. He had lost 20kg over the years of illness. 10kg had been lost in the past three months because of severe nausea.

The cancer was cruel as it melted his body away it took away his appetite. His once mighty frame was reduced to skin and bone. He still wasn’t used to his reflection, it had continued to change. Despite all of the weight loss, one thing he never lost was his sense of humour.

In life he had always done things in his way, at his own pace and it was no different in his death. The family maintained their long vigil, and he remained mostly asleep but responsive when he was awake. If our staff found evidence of his imminent death we would inform them. We also warned them that sometimes people don’t want anyone to be around at the point of death and that he might slip away when an opportunity presented itself.

He was kept calm and comfortable. His family were supported and our patient died three days later.

I think therefore I am? – On Death and Dying

Posted on by
1
Photo by NOAA on Unsplash

I virtually attended a Palliative Medicine conference over the past three days and have heard talks from a wide range of speakers. Included were a gastroenterologist and a haematologist both from specialties who are still unsure about which patients to refer to palliative care, and when to refer them.

It becomes a self-fulfilling prophecy if all the referrals we get are very late then we cannot do as much for the patients and their families. If the referral only arrives 72 hours before death or two weeks before death, does that mean palliative care is synonymous with end-of-life care? But that is not what we are trying to do in reality. Our services are happy to work alongside other specialties. A patient can be on the liver transplant waiting list and also receive palliative care from the local hospice. This is different to the USA where admission to the hospice programme means you cannot have ‘active’ treatments anymore. We have many patients who are still on their palliative chemotherapy/radiotherapy/immunotherapy and many other active treatments including haemodialysis. Even as the patient undergoes various treatments we are keen to help reduce suffering in its many forms, both physical and emotional, spiritual, and social.

How can we get this important message across? A patient referred to palliative care/hospice doesn’t mean that you have given up on them. One of my mentors Dr David Perez who worked in Medical Oncology would talk to his patients about coming to the point where there were no more active Oncology treatments available and the time had come for Active Palliative Care.

Continue reading →

I think therefore I am? – On Utopias

Posted on by
Reply

From next week I’m joining 199 others to explore the concept of utopias.

“To create a future that works, we must work together.” – Margaret Atwood

I’m proud to have been selected as a Fellow in Practical Utopias: An Exploration of the Possible led by @MargaretAtwood on @discolearn!

This is a once-in-a-lifetime opportunity to learn and collaborate with 200 changemakers from around the globe to unlock practical solutions to some of humanity’s biggest challenges, the climate crisis being foremost. 

Want to play a part in co-designing a better future? Get involved: https://disco.co/atwood

I’m currently doing some of the preparatory readings and as part of my personal preparation I’m reading the Report of the Lancet Commission on the Value of Death.

The Lancet Commission on the Value of Death sets out five principles of a realistic utopia, a new vision of how death and dying could be.

Click the link above and check it out for yourself.

Palace of Care – Respect

Posted on by
Reply
Photo by Claudio Schwarz on Unsplash

The first clinical task of the morning was to take care of the patient who had died overnight. The family had been holding their vigil for the previous days. There had always been someone there at all times. They didn’t want our patient to be alone. Having the family staying had helped to make our patient more comfortable.

The patient had died three hours ago. Their skin was cold to touch. Pulses were absent. There were no heart or breath sounds during one minute of listening. The pupils did not react to light. Confirmation of death would be followed by certification of the death.

Cause of death was recorded on the death certificate, in as simple terms as possible. Our patient had died of metastatic cancer.

A letter was written to the general practitioner as we didn’t want there to be any surprises.

The dead person needed to be treated with as much respect as the living.

Their family needed to finish their vigil, and to move on.

The funeral director was called and they came to collect the body.

Rest in peace.

I think therefore I am? – How Much Is Enough?

Posted on by
Reply
Photo by Felicia Buitenwerf on Unsplash

How much is enough? This is a question not asked often enough of ourselves.

Many of my patients had been saving their fun times, their big and only overseas trip until their retirement. I’ve witnessed many tragedies as people retired and become unwell. The opportunity to enjoy their hard-earned reward stolen from them by illness. Falling unwell soon after retirement. Going from the working life to the dying life within a matter of months.

Balance must be sought and acted upon. That’s what my Aunty Helen always tried to teach me. It is good to scrimp and save but enjoy yourself along the way, as you may never get the chance to. I’ve seen it in the stories of the patients I look after. They saved up all their enjoyment until the end but were too unwell to enjoy anything.

Working in palliative care you’d think we’d learn the lesson – life is too short. Seeing this stark reality daily through others’ experiences could act as a stimulant to action. Often it doesn’t, we practitioners are just as human, just as blind as everyone else. It won’t happen to me. I’ll be one of the lucky ones. But it could. Happen to anyone.

Are you still working towards your goals and values? Are you being true to yourself and your life mission?

How much is enough?

It depends on who you ask, everyone will have answers which match their bespoke lives.

How much money is enough?

How many investments owned is enough?

How many degrees studied is enough?

How many books written is enough?

How much time is enough?

Never enough time.

Palace of Care – Ripples

Posted on by
Reply
Photo by David Becker on Unsplash

Please.

Remember that.

Death.

Of one.

Affects their partner.

Affects children.

Affects their siblings.

Affects their extended family.

Affects the community belonged to.

Nothing is ever.

The same.

Again.

I think therefore I am? – If You Had A Choice

Posted on by
Reply
Photo by Vladislav Babienko on Unsplash

At a palliative care conference years ago the audience was asked to choose between two options. Would you rather die instantly without warning or would you rather know about it and die more gradually? We were instructed to think through both options for a few minutes before a show of hands was counted for each option.

Dying instantly, for example from a cardiac arrest, would mean less suffering for the dying person. It’s possible it wouldn’t be so bad for the person going through it. No fear of what was about to happen to them would be generated as they would be taken by surprise.

Ignorance may well be blissful but would have drawbacks as well. Total loss of control, and inability to finish important business. You’d be robbed of the chance to say goodbye to those important to you. You wouldn’t be able to leave your intended legacy. Death is associated with loss and sudden death is associated with its own set of losses. Those left behind would also lose the opportunity to say goodbye to you, to obtain at least some sense of closure. Survivor’s guilt, “If I had known he was about to die I would never have left them alone at home.” There may be more suffering for your loved ones, so many things they will never be able to say to you again.

Continue reading →

Assistance for Australians with administrative tasks after someone has died

Posted on by
1

Honestly, the very last thing you want to do when you are grieving is wade through the piles of administrative work that’s needed after someone you love has died.


I remember after my mum died, doing to the Post Office to request that her mail be diverted to me. Are you the Power of Attorney? Queried a the young Post Office worker. Well, yes I am, but as the person has died, the Powers of Attorney have ended So you need to ask me if I am the Executor of the Estate.
Her: …..

Me:….

Her: Are you the Executor of the Estate?

Me: Why yes, yes I am.

Or CItylink. Would not tell me why my mum’s owing balance was cos of privacy. But I wanted to pay it off and close it. Can we have a certified copy of the death certificate. OMG. If I paid you $50 would that cover it? $100? No, can’t say., privacy. Gah!

I have fortunately not had the need to use this new service https://deathnotification.gov.au/ but it is a fantastic idea and I look forward to hearing how it goes. The Australian Death Notification Service (sorry to our cousins over the ditch) takes on much of the administrative burden after someone dies for you, and it’s free. What a fantastic idea! It’s supported by all the States and various organisations.

Let us know if you use it or hear of anyone who’s used it.

https://deathnotification.gov.au/