Palace of Care – Lost

Photo by Jeffrey Hamilton on Unsplash

Life-limiting illnesses are associated with many losses. Loss of control is one of the worst losses of all. As the condition progresses the losses continue to accumulate and some may be worse than others depending on each person. Things that were taken for granted are missed greatly and some of the losses can be especially cruel. Each of them is grieved over.

She loved to talk and would chatter away from morning to night, until the last months of her life. Her friends couldn’t recognise her voice when they phoned each other. Her voice sounded as hoarse as a young pop star before rehabilitative larynx surgery. Her breathing worsened and she wasn’t able to produce the volumes she was used to speaking at. As the weeks went by her voice played hide and seek and became harder to track down. Only a whisper was left, and even her family couldn’t understand what she said at times.

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Palace of Care – RIP Technoblade

Photo by 卡晨 on Unsplash

Today tragedy leaked from the internet and into my home and many millions of homes all over the world. 23-year-old Minecraft YouTuber Technoblade has died. He had written the last message to his fans only eight hours before he died. He had asked his dad to read out his message on this video. If you watch the video make sure you have some tissues at hand.

Technoblade was diagnosed with cancer in August 2021 and continued to post his popular videos even whilst undergoing various cancer treatments. With his usual generosity, he continued to share his entertaining insights with his 10 million followers.

Millions of ‘kids’ all over the world have learnt about the reality of life with cancer. Today they have experienced the death of someone who they may have gotten to know over many years of watching his videos. Grief has appeared on their drop-down menus, and they may not know how to deal with these unknown feelings. A huge reality check has occurred and the stark difference in real life is there is no respawning.

An online companion can no longer keep them company. Loss of life has led to a loss of childhood innocence. Please take care of your kids as they mourn during this sad day on the internet.

I think therefore I am? – Different Jurisdictions

Photo by Sandi Benedicta on Unsplash

The Land of Milk and Honey

“NSW  residents will have access to the highest quality care and pain management services at the end of their life, with palliative care and specialist health services to receive a record $743 million funding boost over the next five years.
Premier Dominic Perrottet said the 2022-23 funding boost is on top of the $300 million the NSW Government invests each year in palliative care.”

Quoted from this NSW government press release.

Meanwhile in Aotearoa New Zealand

In Aotearoa New Zealand we have to use milk and honey to make fundraising bake sale items. It is ridiculous that health care institutions have to count on sales of Chocolate Brownies and other baked goods in order to maintain free services to eligible patients in the community they serve. Literally having to sell baked goods in order to try to save staff jobs. We really do need a hand here, as we don’t want good patient care to have to depend on our baking supplies.

“Sorry Mrs Smith I can’t admit you because we have run out of flour. I would like to see you in the outpatient clinic Mr Kim but we can’t find any cocoa.”

Where is the kindness for some of the most vulnerable in our population? Palliative Care is not just about end-of-life care, but the care that is required in the time leading up to death, which might be 6 to 12 months or even longer. It is not just physical care that is required but psychosocial/spiritual/cultural care as well. The dying members of Aotearoa’s population deserve to be treated better.

“Sorry Mrs Ihaka, you can’t come become a hospice patient because we ran out of vanilla essence.”

What if hospices had to reduce services or shut down?

Who would care for all of the patients and families that we help?

Would the already over-stretched hospital sector be able to cope?

What if hospices were allowed to disappear?

Be worried.

It could happen.

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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Bedside Lessons – 20 – Crossing the Line – Part 1

Photo by Max Böhme on Unsplash

I was working on the liaison psychiatry team in my final year of medical school. I went to meet a patient that had self-referred, which was unusual. Psych liaison provides psychiatric input for patients who also have medical issues that have brought them into hospital. I went with the nurse specialist to see the patient, an Englishman in his mid-thirties.

Work had brought him and his Latin American wife across the world. He was a nature documentary maker and had been based in the lower South Island filming the local wildlife. Just before Christmas he became unwell with a severe nosebleed, which required hospital intervention. Simple blood tests revealed grossly abnormal results. Acute Myelocytic Leukaemia (AM bloody helL) was the shocking diagnosis which destroyed their plans for Christmas and life in general. An urgent admission was arranged to our hospital’s Haematology department, which served the entire region. Harsh chemotherapy needed to be started otherwise our patient would’ve only had days left to live.

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I think therefore I am? – A definition of Grace

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http://www.flickr.com/photos/144232185@N03/30117339256″>PARMIGIANINO,1534-35 – Deux Canéphores se donnant la Main (Louvre INV6466)

In healthcare it is important to set clear boundaries in order to care for yourself and your patients in a sustainable fashion. In the practice of palliative care, boundary setting is even more important, as the therapeutic relationship can be very intense and intimate at times. We have to keep in mind that this relationship will likely end soon, with the death of our patient. It can be a difficult balancing act; using your humanity to make important connections with another human being; while at the same time keeping professional distance to protect the both of you.

That being said, it is inevitable that there will be some cases which will hit you harder than others. When a deeper connection has been made, you will feel the loss and grief much more strongly. Informal reflection with your team members and professional supervision have an important role to play in keeping us palliative care providers safe to continue doing the important job that we have to do. We need to remind ourselves that this is a job that not everyone in healthcare can handle. That those of us who chose to work in palliative care, owe it to ourselves and our patients to look after ourselves. We are a precious resource and if we do not take care of ourselves, we will deny our patients and their families the difference that we can make in their lives, and deaths.

After almost ten years of working exclusively in full-time palliative care practice I would like to share a case that reminded me of just how human I am, and how much value I obtain from professional supervision and from sharing with my team members.

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Living with grief & loss: #PallANZ chat

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Grief and loss is something we will all face at different times throughout our lives. Whether it is the death of our pets, our friends, our children, siblings or parents; the experience and expression of grief in response to these losses can be a very personal and individual thing. Grief can also arise in anticipation of loss. For those living with life-limiting illness, living with the loss of social role and professional identity can be especially challenging.

Thoughts about old, new and future losses can be particularly common during the festive season. For some of us, it may represent an anniversary of the death of a loved one, and bring with it painful memories of loss. Some might be facing their first Christmas ‘alone’, while others may be grappling with the possibility of celebrating their ‘last Christmas’.

While living with grief and loss is a personal experience, we don’t have to endure it on our own. As a community, there are many ways that we can support each other. Join Palliverse and Palliative Care Australia CEO Liz Callaghan (@PCACEO) to reflect on 2016 and talk about grief and loss.

Carers and people with palliative care needs are especially welcome, as are health professionals, researchers, policymakers and interested community members!

If you are new to twitter and tweet chats, see our “idiot’s guide” here: https://palliverse.com/2014/09/03/idiots-guide-to-twitter-for-health-professionals-twitter-101/

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A death in the family

It was with great sadness that we learnt that Palliverse contributor Elizabeth Caplice had died.

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Click here to read Ginger Gorman’s report.

Thank you Elizabeth for your contributions to Palliverse, and for your advocacy for Palliative Care.

Thank you for trying to make the world a better place.

We’d like to extend our deepest condolences to Alex and your loved ones.

Rest in peace Elizabeth.

James Jap on behalf of the Palliverse community.

#PallANZ tweet chat

PallANZ 201512

Grief and loss is something we will all face at different times throughout our lives. Whether it is the death of our pets, our friends, our children, siblings or parents; the experience and expression of grief in response to these losses can be a very personal and individual thing. Grief can also arise in anticipation of loss. For those living with life-limiting illness, living with the loss of social role and professional identity can be especially challenging.

Thoughts about old, new and future losses can be particularly common during the festive season. For some of us, it may represent an anniversary of the death of a loved one, and bring with it painful memories of loss. Some might be facing their first Christmas ‘alone’, while others may be grappling with the possibility of celebrating their ‘last Christmas’.

While living with grief and loss is a personal experience, we don’t have to endure it on our own. As a community, there are many ways that we can support each other. Join us to talk openly about living with grief and loss.

TOPIC                    Living with grief and loss

DATE / TIME       10th December, 2015 @ 1900 AEDT

MODERATOR     @Elissa_Campbell

T1 Have you experienced grief and loss? How would you describe it? And what did you need from those around you?

T2 How do children live with grief and loss? How are they different from adults?

T3 What kinds of support are there for people living with grief and loss in your community?

T4 As a community and as individuals, how can we better support those living with grief and loss during the festive season?