Palace of Care – Respite

Photo by Jiaqi Zhang on Unsplash

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.

I think therefore I am? – On Utopias

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.

I think therefore I am? – Blah Blah Blah

Photo by Pete Alexopoulos on Unsplash

A lot of importance is placed on the first thousand days of life and that is rightly so. The first three years of life are the formative years and can make all the difference in someone’s life. Some of the crucial attachments are formed and if things do not go well, there may be major setbacks which affect the rest of life in many ways.

What about the last thousand days of life? How a person lives in their final days needs to be considered. All of us who are born and live will one day die. Exactly when we do not know. People with life-limiting illnesses will live for much shorter periods than most people of similar ages. Illness has a detrimental effect on a person. Their physiological age no longer matches their chronological age. People with life-limiting illnesses can be thought of as frailer. Their organs are under strain from illness and may not function so well. They need the input of the whole multi-disciplinary team. Occupational Therapy and Physiotherapy input may become essential components in maintaining functional ability and independence.

The New Zealand Health Strategy was published in 2016 and it aspired for all New Zealanders to live well, stay well, and get well. No mention was made of dying well, despite all New Zealanders dying at some stage. Also in 2016 was published the Healthy Ageing Strategy aimed to have, “Older people live well, age well and have a respectful end of life in age-friendly communities.” This was followed in 2017 by the Palliative Care (In)Action Plan, which talked about planning a lot of planning but not much action.

Hey, let’s form some committees to plan for planning to take action. That will only take ten years or so, by that time a miracle would’ve happened and death would’ve been cured. Not quite, but the biggest health sector reforms in a generation started taking place on 1 July 2022, revealing a mystery to be solved. What will happen to us all? What opportunities for long-term palliative care partnerships may become available? What opportunities can we make for ourselves to ensure that palliative care/hospice remains relevant now and into the future? How can we shape the last thousand days of New Zealanders’ lives? Time to be creative and innovative. Time for some alchemy, time to transform talk into action. What do we want palliative care/hospice to be like in five years? Ten years? 25 years?

Hey, wait a minute, we haven’t sorted out the five-year survival of the New Zealand hospice sector yet. Maybe that needs to be the top priority.

I think therefore I am? – Good Finding

Photo by Nathan Dumlao on Unsplash

We human beings have a natural tendency to look for the bad in any situation we encounter. This is a protective mechanism as we need to be able to deal with any threats we may come across. In times past this might have been crucial in keeping us alive but the level of threat that we encounter in modern day life is much less than what our ancestors experienced long ago. Can we change our outlook on life and could this be of benefit to other people?

I came across the concept of good finding as an exercise I completed when I was part of Akimbo’s altMBA last year. Each day look out for good things that people in your life are doing and let them know that you have noticed them. Be on the lookout as you will need to find at least three things a day that viewers can choose from. Do it for the next 30 days to establish the habit and then see what happens to the world around you and your view of it.

How does it make you feel?
How does it make the recipient feel?
What other changes do you notice?

Give it a go, who knows, things may never be the same again.

Guest Post – Naomi’s Notes – Waiting for an Invitation

Photo by Joshua Lanzarini on Unsplash

Two things are certain in this life,  we are born and we will one day die.   The time of death is uncertain, and in our life between these two we try and be of benefit to our families, community, country and the world at large.

We are all part of the same human family; we are all interconnected.  This has been highlighted  over the past two years with the pandemic.  News bulletins brought us graphic images of family and friends mourning because they were not able to be with their loved ones before death and for the funeral.  Harrowing images of countries being in lockdown showed us so many people dying daily and corpses being loaded into trucks heading to the cemetery for mass graves.   

For a while the world went quiet as we all felt the sorrow of people who were unknown to us, as well as the fear of what lay ahead.  We each dealt with it differently according to our cultural background and conditional on whether we are able to face our own mortality.

Fear is a feeling that comes usually because we don’t know about the issue that is confronting us, we have no experience with it, and we can’t predict what is going to happen.  We don’t know what to do.  Losing confidence in ourselves, we get shaky.

It is an indictment on us all that we can talk to someone on the other side of the world and even in space through technology, but because of fear avoid face-to-face communication with a work-mate or someone we see every day, or people within our own family… but especially someone who is dying.

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I think therefore I am? – Butterfly visitors

Photo by Marian Brandt on Unsplash
  1. Reincarnation was one of the topics of conversation in the first room this morning. Our patient was a believer and had told his wife that she would come back as a dog. Unfortunately one of their daughters had died only a few years ago. It is always difficult for parents to deal with, as it goes against nature’s order to have a child die before a parent. One of the tragedies in life that elderly people would like to avoid if at all possible. Their daughter had died but had left her traces everywhere.

She had always loved butterflies, and had grown lots of swan plants in order to provide food for her favourite Monarch butterflies. She had a keen eye for their caterpillars and could see them from a distance, their yellow, black and white lines indicating their presence. She especially loved the pupae/cocoons that would form as the caterpillars went through the biggest changes in their lives, metamorphosis. Coming out the other side of the process transformed, with a new outlook on life and the ability to fly. Looking so different in colour scheme and features. She had always loved to have butterflies around. In some cultures it is believed that butterflies are visiting dead friends and family members who have come to see you from the other side of the grave. This is a comforting thing to have your ancestors come to see how you are.


Our patient had been steadily deteriorating over the past week, and he and the family had derived some comfort in being visited by Monarch butterflies. It was thought that their late daughter/sister was visiting their father as he entered his final cocoon state, just before dying.
I told them that when people die in our hospice we would affix a butterfly to the door.

I have often drawn cocoons on our patient list board to indicate that people are undergoing the final transformation in their life, the dying process. One in which everything starts to wind down, the heart, lungs and other organ functions change. A person becomes sleepier, and less clear in their mind, Nature or a higher power’s way of protecting the dying person from the full experience of dying.

“Please keep on talking to him, he can hear you, but might not be able to respond to you.”
Family members were considering leaving for home to come back again soon, but I advised that he could die at anytime, and that traveling under lockdown restrictions was not as easy as usual. Probably better to hang around and support each other for a few more days.

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I think therefore I am? – Holding Hands

Photo by National Cancer Institute on Unsplash

There is nothing wrong with holding hands in hospice. The problem is when that is the only treatment that you have to offer.

When modern hospice started there may have been less that could be done for patients thus holding hands may have had to be one of the only treatments available. If they couldn’t control your symptoms then at least you didn’t have to die alone and having someone hold your hand might provide some comfort.

Hospices may have started off as places where semi-retired doctors, nurses and others might go to work when they were wanting an easy job at the end of their careers but modern day hospice requires staff who are willing to continue learning, to grow their skills and knowledge as palliative care situations have become increasingly complex situations. Due to advances in medical treatments people are living longer than they ever have before. The silver tsunami is the greatest achievement of modern medicine, people are able to live to old ages.

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Guest Post – Naomi’s Notes – Change

Photo by Markus Spiske on Unsplash

She was 80 years old, terminally ill and had loved gardening all her life. She filled her yard with beautiful flowers and an abundance of vegetables.  She enjoyed the peace and satisfaction it gave her.  Only using what was needed, she usually gave away the vegetables to family members or visitors.  

When I told her I had a job as a part-time Backyard Garden Coordinator, she suggested that it might be nice to have a vegetable garden.   When I reminded her of the promise I made to myself when I was 10, about never being a gardener when I grew up, she said to me,  “darling things change, that was then and this is now.” 

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How to rock the boat without falling out – interested in Change?

For this week’s social media post we visit The Edge and the change and innovation folks from the NHS in the UK. The School for Health and Care Radicals is running a free online course. Here’s what they say about it below…..

Rock the boat and stay in it! Anyone who wants to bring about change has to be ready to break the rules. But in health and social care, that can be really difficult. The art of rocking the boat while staying in it is something it seems no-one is ready to help you learn. That’s where the School for Health and Care Radicals (SHCR) comes in. Brought to you by NHS Improving Quality, the School is entirely based online, is completely free, is backed by the world’s largest health organisation: the UK’s National Health Service (NHS), and is a platform for radicals to learn together, using powerful, guided learning which also qualifies for Continuing Professional Development points*.

The School for Health and Care Radicals is a free, five-week virtual learning programme for change activists in health and care. Five modules Absolutely free 9.30am-11.00am GMT Friday morning online sessions (or catch-up when you’re able) Handbook and study guides Social Guided Learning Use it how you want! If you’ve been frustrated by having to navigate stifling hierarchies to get the changes you know are needed, or criticised for being a dissenter, disruptive or even divisive, then the School for Health and Care Radicals is for you. It’s more than just a school – it’s a platform for learning, and a community of people like you. You can read more about the School on our FAQs page.

See more at: http://www.nhsiq.nhs.uk/9022.aspx#sthash.aphbFb9p.dpuf

I am joining up so I hope to see you there. It’s a good time for south eastern Australia, at 20:30 on a Friday night, but I understand that you can do it at any time. The Edge also publishes an e-newsletter which is free – heaps of interesting and inspiring reading there from thinkers and leaders in health. The Edge makes connections between people worldwide who are interested in transformational change and disruptive innovation in health and care. http://theedge.nhsiq.nhs.uk

Cheers, Sonia