Palace of Care – A Humbling Day

At the start of the Jail and Bail fundraising event finale our guest speaker Marketing Guru Mike Hutcheson shared entertaining stories from his life and career which inspired us all to think differently. Copies of his latest book were auctioned off within minutes. They can be purchased on his website.

I started my thank you speech with one word.

Why?

I asked everyone to reflect on why they were here at our fundraising event. Why had they chosen to take part this week? They could’ve been at work, or spending their time somewhere else but they choose to spend their time raising funds for my hospice. Why are you on this planet?

I gave them 10 seconds to reflect on their Why before I shared my own.

I am here on this planet to make the world a better place for dying people.

I read out the story about Beds that I had shared last night on Palliverse, LinkedIn and my fundraising page for this event.

The finale was a unique event where all of the bailees, myself included, were too busy fundraising to talk to each other. Necks craned over smartphones and laptops. Beavering away to fundraise as much as possible in the remaining two hours of the event. The 12 busy bailees and their supporters volunteered their time to support our cause.

There’s a lot in the world that can jaundice your vision into cynicism but today I saw people in action for a good cause. It was enlivening to witness community spirit in full flight. Together we did this. A bunch of friendly do-gooders used their creativity to help their fellow community members. Inspirational stuff, everyone from many different walks of life united to crowdfund for hospice.

Four beds had been fundraised for by noon.

Throughout the two-hour finale, we had generated enough funds for five beds and were heading towards six.

I checked my dashboard tonight and found:

The total up to this point is $28051, enough to fund six beds.

And it’s not over yet.

A special thank you to Anonymous for making so many donations.

Thank you to my fellow bailees for being such good sports. Thank you to all donors, your contributions will have a positive impact on the patients and families we serve in our community. Also thank you donors for sharing your kind and encouraging words. They mean a lot to our hospice team. Our patients were people just like you and me, trying to make their way in life when severe illness struck and changed their life journey forever. Knowing you care about them means a lot to them.

Thank you all for making a difference.

Thank you all for Making Hospice Happen.

I think therefore I am? – Notes on Beds

My hospice is fundraising for new beds as per the link below:

I’m being jailed for a good cause, and need to be bailed out

Here’s the first draft of a speech I’ll be performing tomorrow at our fundraiser finale event. This story will become a chapter in the second book I’m writing. Working title – More Bedside Lessons.

If a bed could talk, what stories would it tell?

I was there when the life partnership was signed off.

I was there when the twinkle in the eye became something even brighter and shinier. I was there at the start of a new life. People begin in beds.

Nine months later a little human was born on a bed.

I was there when two became three, four, five, including one with four legs and a tail.

Special birthday celebrations began with breakfast cooked by the younger ones.

Beds are where the children sneak into when they are frightened during the night. And also the pets during a thunderstorm or Guy Fawkes Night.

For children the bed can be a trampoline, or a crash mat. The first flip of a budding gymnast. Or the first submarine of a deep sea explorer.

I keep people warm and tucked in.

What stories does the hospice bed have to tell?

I can be a place of safety, a place of refuge, I’ll make you comfortable.

I’ve enabled family members to be together, surrounding their treasured one with love.

I was there when they had their deep and meaningful conversations.

I cheered along with the family as we watched a movie together.

I’ve overheard important conversations. I was there when life-changing decisions were made.

Breakfast in bed can be a nice treat. Lunch and dinner in bed is usually only for when someone is very unwell.

I was there when the doctor helped the family to understand what was happening.

I’ve seen other family members coming to visit, those with four legs and a tail, those with two legs and two wings. All of these visitors have been welcomed even the slow moving tortoise with the wonky leg – Yes he was troubled by a reptile dysfunction.

At times I’ve had to become a toileting facility when my guest is too unwell to get up. I can also provide a comfortable place to have a bath.

The congregation can bring the church service to my guest, I welcome them.

No Joke – The Rabbi, the Imam, and the Lama are all welcome to visit my guests.

When people become more unwell they spend more time on me. I become the final resting place for many people.

In the hospice they often pull up another bed to be alongside me. They may have been together for half a century and have never slept apart. Why does that need to change at the end of life?

I was there when the elderly couple said goodnight to each other for the last time.

Hospice beds are not just a bed.

It’s a coffee date with your best friend.

It’s family meal night.

It’s where I held his hand for the last time.

It’s where we had our final conversation. It all started with a kiss, and it ended with a kiss.

Thank you for your fundraising efforts. We will get many years of service from our new hospice beds.

The beds will be put to good use, ensuring patient comfort and helping to put their loved ones at ease.

Goldilocks would approve of these beds. They are just right.

Let’s make our hospice beds as comfortable and comforting as we can.

Thank you for making a difference.

Thank you for Making Hospice Happen.

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.

Palace of Care – Second Languages Part 2

Photo by Jaddy Liu on Unsplash

I had been on call for the hospital when the little old Chinese man had first presented to hospital. They had discussed his situation, a large stomach cancer which kept on bleeding, and that his Hb level was only 41. My opinion was that he was dying from recurrent bleeding that could not be stopped. My advice was that the hospital team have a discussion with the patient and family about the fact that his bleeding would be a life-ending event, that further transfusions would not be able to keep up with the amount of bleeding that was happening.

Some of my advice was taken, but not everything. It was as if the hospital doctors had spoken to me in a second language, one that didn’t lead to mutual understanding. They did end up having a conversation with the patient and his daughter about no further transfusions, but this was after transfusing one more unit of blood. The hospital doctor could speak Mandarin with the patient and family. He told them that the last unit of blood was an, “especially strong unit of blood, and would give him an extra boost.” Following this final transfusion the patient was sent across to the hospice.

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Putting the CAR-T before the horse?

Dr Benjamin Thomas’s excellent thread about economic justice for palliative care patients in the context of the announcement of a likely announcement regarding the Government funding around 200-250 patients for $500,000 each to receive CAR-T treatment.

He calculates what we could do for palliative care patients with the same money.

Worth a read! Thanks Ben @andiyarus

https://threadreaderapp.com/thread/1222006604289101824.html

 

 

Announcement re CAR-T funding

 

Palliative care and #ausvotes19

It’s election time again! Honestly, we have not had a new Prime Minister for ages in Australia. We sadly can’t have Jacinda Ardern, but there it is.
Dr Benjamin Thomas (@andiyarus)  has been tweeting up a storm putting pressure on the powers-that-be and the powers-that-wannabe in advocating for #palliativecare patients in the upcoming election. He visited the @Palliverse to answer a few questions for us. Continue reading

PhD scholarships available – improving psychosocial support for people with cancer & their carers

Palliverse has heard about two PhD scholarships in the area of improving psychosocial support and education for people with cancer and their carers, at Curtin University in Perth, WA. Scholarships are available to health professionals (particularly nurses and radiation therapists). For more details see the Curtin University website.

Victorian Cancer Agency funding opportunities

vca_logo

The 2016 Victorian Cancer Agency funding round is currently open, with a number of schemes available that may be of interest to palliative care researchers:

  • Translational research projects
  • Clinical research fellowships
  • Mid-career research fellowships
  • Early career seed grants
  • Supportive care scholarships (at the Olivia Newton-John Cancer Wellness and Research Centre)

Most of the applications close in August.

 

Dying well

It’s a couple of years old now, but still good…. Here is the introduction to an article in the Conversation about how Australians need support to die at home. Should be mandatory reading for politicians and health service policy makers!

“The baby boomers are growing old and in the next 25 years the number of Australians who die each year will double. People want to die comfortably at home, supported by family and friends and effective services.

But more than half of Australians die in hospital and about a third die in residential care. Sometimes they have impersonal, lingering and lonely deaths; many feel disempowered.

Grattan Institute’s Dying Well report sets out how we can improve the quality of dying in Australia. With an investment of A$237 million, we can double the number of people who are supported to die at home – and the same amount could be released from institutional care spending to pay for it.”

I’d vote for it!

Read more here

 

guest interview – Soula Ganiatsas, Palliative Care Research Network Victoria

Tell us about your job.

I am the program manager for the Palliative Care Research Network Victoria (PCRNV).

What does PCRNV do?

We try to gain funding to conduct clinical and community intervention research. The PCRNV also  provides an opportunity to network and collaborate with other palliative care researchers through PCRNV forums and workshops.

We also help with access to a variety of PCRNV funding schemes including; PhD scholarship, small project and travel grants. There can be support with developing your research idea into a potential project and grant proposals via the PCRNV Concept Development Workshops and also mentoring.

But, it’s not right to do research on people who are dying, is it? 

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