Palace of Care – Hospice Garden Centre

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“Doctor, I’ve got a fundraising idea for the hospice.”

“Aha?”

“I’ve been going for walks around the garden and there are a lot of nice plants. Some of them you can’t find in garden centres. Has the hospice ever thought about selling plants?”

“No, we haven’t.”

“Here’s a photo of some plants I noticed. They have self-propagated themselves and are growing well. Do you think I could make a donation in exchange for two of the plants?”

“I’ll check with the gardening team, but I think that will be fine if there are a lot of the plants. What are you thinking of doing with the plants?”

“I’d like to plant them in my garden. You’ve all looked after me so well during my admission. I’d like to maintain some connection to hospice even after I am gone. So later on when my children see the plants in our garden they will remember my time in hospice as a good time.”

“That sounds nice. I’ll get our team onto it and we’ll make it happen. Don’t worry about the donation.”

“No Doctor, I must insist. I know my donation will benefit other patients.”

“Okay, Deal made.”

I think therefore I am? – Colours

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Most people have a favourite. Something caught your eye when you were a kid. It might be the colour of your favourite toy. Or your favourite food. It might be the colours of your nation’s flag. Colours are abundant in our world, the different shades make the world more interesting.

People are of different skin colours too. Some of us are white. Some of us are Brown. Black. Yellow, Olive-skinned. Grey. Different but the same in many aspects. Various empires sent their colonists out into the bigger world. The locals were impacted and the trauma that was experienced can be passed down through the generations. A deep lack of trust was ingrained by the actions of colonists toward the natives. This distrust can be passed down the bloodline, leading to intergenerational trauma.

When you are in good health you can tolerate a lot more than when you are unwell. Your baseline fears and needs come to the surface under stress. The uncertainty of their situation can leave a person terrified. The fears from the past can come back, no matter how strong a person had been in suppressing them.

Past traumas can be triggered unintentionally and people may want to avoid situations when they feel at their most vulnerable. People try to remain as independent as possible, and they may struggle in their non-acceptance of help. When you are weak and tired you may try to show your strength by pushing people away. Not being able to toilet or shower oneself may be one such situation. Requiring assistance means the loss of privacy and dignity. Having to be naked in the presence of others is a huge line to cross. Having to admit, “I need help. I am vulnerable.” A nightmare situation for anyone, having to be fully exposed. Add to that the inter-generational fear triggered by someone who resembles your ancestors’ oppressors and pre-existing suffering can be amplified.

Colours can affect us in many ways. Red light means Stop. Green for Go. What does amber/orange mean? Speed up or slow down? Everything becomes a blur of colour. The centre cannot hold, as a human being accelerates towards the finish line. The colour in their eyes faded down to a sparkless stare into space. The light of the person dims as they prepare to leave this plane of existence. Off they go to parts unknown, never to return again.

Palace of Care – Existential Devastation

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I was worried about my patient. Swallowing was compromised. Their thinking was compromised. Oral intake was minimal. More of the day was taken over by the need to sleep. Pain control was still inadequate. They felt so out of sorts, miserable in all aspects of their being. A proud person who had worked hard to overcome many difficulties. Trying harder had worked throughout life. The same attitude prevailed during the cancer battle. Pushing themselves harder and harder, no matter how terrible the side effects or the pain. Sheer determination and willpower saw them through.

This came at the cost of themself. They hadn’t felt normal for a long time. The physical pain could be tolerated but the inner voice of existential distress had become unbearable in recent weeks. It could not be ignored. Nothing felt right. It was not supposed to be like this. They should have been planning for a family holiday rather than their own funeral to ease the burden on the family. A casket had been chosen and of course, it had to be in the favourite colour. Different from most people’s preferences but being different was nothing new. Growing up as an immigrant in a mostly white country you are used to being different.

There was so much that had been planned for the future, the future stolen away by cancer. Cancer took away too much and had not finished. It was taking precious life away, draining the internal battery constantly. The image in the mirror was shrinking day by day. The sense of intactness was long gone. Feeling like themself, was but a distant memory from a bygone era, from someone else’s life. There was still too much to do. The need to get everything just right had always been there, now it was all-consuming. Too many competing priorities and time, precious time, was running out. Too many thoughts smashing against each other in their head. Unable to make sense of it all. The nights were the worst time of all. The long lonely nights were when the thoughts reached their crescendo and then deteriorated into cacophony.

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Palace of Care – Earning Trust

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It had taken months to earn their trust. I had to show a willingness to listen. To demonstrate flexibility in shared decision-making. Each clinic visit involved negotiations. I thought I could make them more comfortable with my medications. They did not want to try my medications. I pushed, and they pushed back. I pulled, and they pulled away. I made lots of suggestions, but most of them were shot down. The interactions were always polite, but it was difficult to engage.

I was sure the treatments were making them feel worse, but they would’ve done anything to live longer, no matter what the personal cost. 12 cycles of chemotherapy meant eight months of being imprisoned mostly at home. Unable to venture far from the toilet because of the almost constant diarrhoea. Always accompanied by crampy abdominal pain, day and night. Long days and longer, lonely nights. There was no way to rest properly apart from the few days between cycles when they’d feel almost normal again. Then it was time to start the next cycle.

They had planned a trip with their family. They wanted the children to travel with them to far-off lands. They wanted to create a memory of an exciting family trip. The journey was booked for six months. I was worried about our patient living through the next four months let alone six months. I talked about smaller trips closer to home. The children just want to spend time with their parents. It doesn’t have to be fancy. Short day trips would be just as memorable. The children missed their parent’s cooking. Their other parent didn’t cook as well despite their best efforts. The kids longed for a taste of normality.

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I think therefore I am? – No Surprises Policy

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The idea behind this policy is we do not want any patients or their loved ones to receive any surprises if there is something that we can do about it. We don’t want anyone to be surprised that they are deteriorating. We don’t want anyone to be surprised that their loved ones are dying. This is to give people as much warning as possible if major change is occurring. Signalling transition points allows a person to have some choice in their situation.

No surprise, if their situation is worsening and their condition is deteriorating. They need to know what is going on and/or their family need to know.
If they are told their time is limited then this can colour the choices that they make. What will they do with their precious time? Will they continue pursuing treatments of dubious benefit? Or will they spend their time and energy on completing important tasks with their family?

It doesn’t really matter what they choose, what matters is to offer them the opportunity to make their own choices in whatever situation they end up in. The uncertainty and loss of control in their end-of-life situation are hard for anyone to tolerate. If I can bring some order to their increasingly chaotic situation, it may make a significant difference.

No surprises for staff and volunteers either. How we treat people is important. If you were in the patient’s situation how would you feel? We want to give them as much advance warning as possible. Unfortunately, we don’t always get warnings ourselves. Sudden deterioration in hospice patients can happen at any time. We will try our best to let loved ones know if death is imminent. Sometimes despite the family’s 24/7 vigil, they might miss out on the moment of death. Some people just want to be alone when it is time to die, they want to spare their loved ones from the final moments. One patient couldn’t leave as the love in the room from their family was holding her there.

No surprises if someone is needing to be discharged, to be transferred to another care facility. We will give the patient and their family fair warning of any pending transfer of care.

Palace of Care – No Surprises

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They’d been unwell with cancer for months and it had led to them becoming bed-bound. Their children had tried to look after them to the best of their abilities. The pain had worsened recently and they’d felt more and more fatigued. The family was not coping well and needed help. When admission to hospice was suggested the family had considered it over a few days before agreeing to it.

On arrival, the patient was in pain but was able to make themselves understood easily. Pain relief was provided with good effect. A family member was rostered to be available all day and all night long. Just in case our patient needed anything overnight.

On review the next morning, the patient needed several extra pain relief doses. We incorporated the extra doses into the syringe driver which was running continuously. We talked to the patient’s son about what was happening. We talked about how worried we were, that she might continue to deteriorate further and that we did not want there to be any surprises.

The next morning and our patient’s pain was controlled but they were no longer speaking clearly. It was difficult to understand their speech, and for them to understand our speech. A marked difference compared to yesterday. More family members had come to visit and we spoke to the eldest son. We brought him up to date with what was happening to his parent. Our patient was dying and possibly had days left to live.

Our patient had a moist cough and was troubled by worsened dyspnoea. We explained that we would not recommend antibiotic treatment if there was a chest infection, given the end-stage cancer our patient was troubled by. We needed to make some changes to their medication mixture. The son appreciated what we were doing, and was going to let the rest of the family know what was going to happen. No surprises.

I think therefore I am? – Everyone is Different

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Everyone is different and has different ways of handling suffering. Suffering is a subjective feeling, and the same stimulus applied to different people can lead to different reactions or responses.

When I was in primary school all the children were not keen to see the school dental nurse. I remember going when I was a five-year-old. Back in those days, the dental nurse wasn’t allowed to inject any local anaesthetic, thus any cavities that required treatment would be done so without numbing medications being used. I experienced having my teeth drilled and I was able to put up with the pain by distracting myself. I could almost laugh the pain away in my mind. It was still there but I could frame-shift away from it. Despite many painful encounters with the dental nurse, I was never afraid of going there. A lot of people in my generation developed dental phobias which have persisted into their adult lives.

I can handle physical pain and found myself resorting to my five-year-old self’s tactics when I had my one and only Taiwanese Foot Massage. People willingly pay money for this service. You step into the communal torture chamber on foot. Your feet are first soaked in hot water with pleasant-smelling oils added. Then the masseur dries off your feet before proceeding with their treatment. Around the room, there were groans and screams as people’s foot bones and joints were poked, prodded, compressed and generally abused. The pain was intense and I had to shift my consciousness to my other place.

The physical pain I can handle. Nausea not so much.

Everyone is different and can handle/or not handle different things.

Suffering is defined by the sufferer and the clinician’s role is to observe and adjust the treatment, to try to decrease the suffering.

It is not the clinician’s role to judge a person. Most of us haven’t been to law school or worked as a lawyer. We need to stick with what we have been trained for and do our job as well as we can.

Palace of Care – Hospice Sounds

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They hadn’t had much to be happy about over the past year. A progressive disease, no longer curable given how far it had spread throughout the body. They were determined to continue their chemotherapy despite the demoralising side effects. Most people would’ve given up after two cycles let alone completing 12 cycles.

A strong-willed person with too much to live for. It was the uncertainty that troubled them the most. They knew death was coming and had tried their best to prepare for it. The loss of control troubled them deeply. They found the advance care planning handbook to be useful in covering the practicalities of this part of life. Funeral arrangements were pre-planned, their will was finalised.

They’d been offered an inpatient admission months ago but they were not ready for it.

“Not yet doctor.”

Some months later they’d become more unwell, wracked with pain and distress in the hospital. They were glad to be admitted to our inpatient unit, and we worked with them to bring their pain under control and they were able to return home.

Over the next month, the rate of deterioration worsened. As per their request, we tried to keep them at home with their partner and their children. They came for an outpatient clinic appointment and ended up needing to stay in as an inpatient.

“How long have I got left?”

“I’m not sure, could be as short as weeks. Could be longer, most people don’t have the level of inner strength you do.”

Once comfortable they were able to relax and even smile. They were on the receiving end of input from the local Dad Joke specialist. Laughter was heard coming out of the room that last week had only witnessed tears. Their laughter was one of my best achievements of the past week.

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.