I think therefore I am? – Can social media help palliative care?

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Hi folks,

You might have already come across Hospice Nurse Julie on TikTok.

In her short videos she explains things that we commonly see in end of life care.

Julie McFadden’s engaging videos have gone viral. Awesome!

How else could social media help us in terms of palliative care promotion?

How can we use these platforms for good?

How can we extend our reach further?

Who else can we help to extend their reach?

How can we help our friends and colleagues in other less developed places provide palliative care better?

Many of us around the world, myself included, did not feel at all prepared by health care school curricula which continue to lack palliative care education.

Personally, in my spare time, I am working on a freely downloadable “Dummies Guide to Palliative Care” book aimed at newbie health care practitioners. Contents to include: Did you know there are five main symptoms when people are dying? Here’s how to identify them, and treat them…

Please let me know if you are keen to contribute, as doing it by myself might take longer than if I had some helpers.

James

I think therefore I am? – In-between

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Palliative Care lies in between the usual medical culture of active treatment and the culture of death and dying. Was that what attracted me to Palliative Care, having lived as an in-betweener for most of my life? Growing up between two cultures; Chinese at home and mostly Eurocentric outside of home. This continued for me in University being part of the local Chinese Group but also being part of the newer Asian immigrant group. A bridge is needed between the two groups as the two different cultures can be different in many ways, and may think that they have little in common.

Standard healthcare is directed at saving life, curing disease, fixing things which are broken. Death is looked upon as the great enemy, something to be fought against, railed against until the dying of the light. People have to go to battle against their diseases, go to war, but when it comes to your own bodies the collateral damage may be too much too handle.

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Bedside Lessons – 12. Zero Degrees Kelvin

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Times of crisis can bring out the best or the worst in people. This is a tale from the dark side.

Before she became ill everything seemed to be perfect. Happily married to the love of her life, they were proud of their three adult children. The eldest already married and had produced the perfect grandchild. Second child a beautiful daughter who was talented, and about to enter the workforce. Youngest son, mummy’s boy, had started university and was on his way to doing something useful with his life. The family portrait was beautiful, three generations of the family all dressed in white shirts and blue denim jeans. What a beautiful family, united in their faith and religion. Stalwarts of the church, the example that the congregation all worked towards becoming. The golden family.

Illness arrived and caused major distress. The mother had always had alternative views to healthcare, had wanted naturally based treatments or no treatments at all. Unfortunately due to metastatic cancer she had to consider many different treatments, and many different medications to treat her symptoms. This soon became a torment for her, challenging her core beliefs. She tried to handle her pain as much as she could but it was so deep, so pervasive, so severe that even her iron will started to rust, to bend beyond it’s inherent structural integrity.

She was admitted in a pain crisis, having not slept for 10 days, woken by pain, exhausted with her family at their wit’s end as well. A highly distressing situation for them all. The facade of perfection had also started to crumble.

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Bedside Lessons – 11. Is healing possible at the end of life?

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She was unwell, and needed to come in for symptom control. She had been sick for many months but the pain had worsened to the point of intolerability. This was one tough lady, and she liked to show just how tough she was by being in your face. This is how I am, and who I am, and if you don’t like it, go to hell. That’s what her outer shell showed anyway, when she arrived she was feeling too unwell to put up her usual shields. She had always had trouble letting people in, and it took a bit of work in order for us to establish an useful rapport with her. Once we did we were able to help with her physical symptoms but no matter what we tried we could not penetrate her deep sadness and her feeling of being unloved.

She had moved thousands of miles from her birthplace, away from her blood family members. She had made a new life for herself over the 20 years that she had lived in New Zealand, but it was away from her family of origin. There seemed to be something from her past that kept on hurting her, even more than her end-stage cancer was able to. Physical pain we managed to get on top of, but her emotional pain we weren’t able to shift at all. Our counsellors, social workers and spiritual care advisor all tried their best but something was held back, which she could not share. Some things just hurt too much to be revealed, even to total strangers.

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Palace of Care – What’s in a word?

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It was the second admission for our patient and it was going to be his last one.

He had been beautifully cared for by his family over many months, but the last week had been terrible. He was agitated, restless, and did not know what to do with himself. His wife wanted him to come back into hospice for end of life care.

On admission he was only semi-conscious, agitated and not able to talk clearly. His body was so unwell that his mind was no longer able to be lucid. Although he tried so hard to be there, it looked as if he was in-between two worlds. His family reported that he was seeing ancestors that had died previously.

I didn’t mince words and tried to be as clear to them as possible. No surprises!

He is so unwell, so exhausted. He is dying.

I purposefully used the word dying at least five times during the 15 minutes of my visit.

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Palace of Care – The Show Must Not Go On

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Hey, welcome to our hospice.

I know that you put on the show for your friends and social media, but you don’t need to do that with us. You don’t have to be all right when you are feeling anything but.

We need to see the real you in order to be able to really help you.

We know how strong and tough you are.

Please don’t use up your precious energy telling us what you think we want to hear.

I will be honest with you but I want you to ask for help when you need it.

We will always use as little medication as we can, but we do not want you to put up with discomfort, we don’t want you to struggle.

We are really keen to help you, if you’ll let us.

Can you do that?

What would make this place feel less like a hospital for you?

Please bring in your own stuff to decorate the walls.

You have made brave decisions recently to stop treatment, which I fully support.

I’d be happy to explain things to your partner when they come in.

Listen to your body, don’t push yourself. Rest when you need to, think of it as a recharge. Ask for help when you need to.

Save your energy for nicer things, more important activities, like spending time with your partner.

If there is anything you disagree with, please let us know.

We’d like to give you back some control of your situation, completing the advance care plan will help.

We are on your side and will be guided by what you want, or don’t want.

Thanks for giving us a go.

Bedside Lessons – 10. Freedom to Choose

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Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.

This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.

Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.

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Bedside Lessons – 9. Doctor to Doctor Part 1

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Doctors are humans too and can become just as unwell as anyone else. When a doctor is assessing another doctor it can feel a bit strange. You might be assessing someone who has had the same training as you have, who may have worked as a doctor for much longer than you have yourself.

I’m usually calm in my approach to patients, well at least that’s what it looks like on the surface. I remember being particularly nervous one day when I was in my second year of being a doctor, as I had to admit one of the Professors that had taught me during medical school. One of the nicer guys who was always generous with his knowledge and time, always trying to nurture the next generations of doctors. He was not well and needed a complete work-up.

I started to see him and the usual procedure involved inserting an IV line and taking off some blood tests. I was about to stab one of Prof’s veins when the head of the department, a female professor, who had also been one of my teachers walked in and watched the proceedings intently. The needle went in, blood was taken, and then my patient Prof number one turned grey and looked like he was about to faint.

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I think therefore I am? – Life can literally be too short

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You’d think that we know this all too well working in palliative care/hospice but we are just as human as everyone else. We also get lost in the busyness of life in general. Rushing from one appointment to the other and having to switch roles as seamlessly as possible. I am no different to anyone else. I don’t have all the answers and am still searching for them myself but I want you to have a think about some questions I raise below.

Life is too short could be a stimulus to reflect on how you spend your time. Are you in a job that you actually enjoy? Do you feel like you are making a difference. We spend a lot of our time at work, 8 or more hours a day, maybe for 40+ hours a week, month after month, year after year. A big chunk of our lives is spent at work, and you may be spending more time with your workmates than you spend with your own loved ones, friends, and family. Are you happy at work or is there something else you’d rather do, somewhere else you want to be? Does it still satisfy you professionally? Are you finding yourself enjoying what you do or do you find yourself putting up with things? What would be your outlook on your job if you only had 10 years left to live? These are questions that we don’t ask ourselves, but are situations that my patients have found themselves in.

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Bedside Lessons – 8. Forequarter Amputation

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He was found on the floor after having fallen down while walking back from his bathroom. A human arm should not have been able to bend at the odd angle that his arm was in. He was in terrible agony and an ambulance was called to take him to hospital.

I met him the next morning on the post-acute ward round. Overnight he had his fractured arm operated on, and screws and plates had been installed in order to fix the broken limb. He needed help with toileting and needed help with feeding. His other limb had been affected by cancer some years ago and had been removed along with his shoulder in an operation called forequarter amputation. It was terrible luck that his remaining arm had been badly injured.

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