Palace of Care – Existence

Photo by Marija Zaric on Unsplash

Yes, it’s become a struggle, every day.

I get halfway through making lunch then I have to rest. When I finish making it I have to rest again before eating.

Heh, my only entertainment is going to the lavvy. And that’s no fun.

Every time I move I need to go to the toilet. Nothing much comes out and it’s exhausting.

Sometimes I make a mess and that’s even more stuff to clean up. I don’t have the energy.

COVID. I thought it would be the end of me. I was almost disappointed when I recovered.

Don’t get me wrong, if I wasn’t sick like this I’d be happy to continue living, but I have these illnesses. Nothing is going away, it’s only going to get worse.

I don’t want to be here any longer than necessary. This is existence. Not a life.

Blood transfusion? What’s the point? So I can live longer to get worse?

No, I wouldn’t want you to treat a chest infection. Yes, Let nature take its course.

No resuscitation.

Yes, you do understand me. Thank you.

You listen to what I want, nice for a change.

Palace of Care – Chronic

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The chronic illness had been there for twenty years and had disrupted every aspect of their life. It had caused a lot of pain. It was finally diagnosed only four years ago. Treatments were started but never made a significant difference. The effects of many long years of untreated illness were permanent. Somehow despite all of their travails sense of humour was maintained and they had even maintained gainful employment. Others would have been changed into photographic negative images of themselves, but not this person.

They prayed to their God for a way out of the seemingly never-ending suffering. Some years later the prayers were answered in the form of inoperable cancer which at the time of diagnosis had already spread throughout their body. Actual relief was the response when they were given the bad news. That’s how bad quality of life had been. They had considered accessing the Assisted Dying service but thought it would be against their religion. Their end was in sight, cancer would provide a natural escape from suffering, but it still felt far too slow…

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 – 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.

I think therefore I am? – GPS

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We’re not the driver of the journey. We are more like a GPS. We are here to help them in their travels. The driver is in charge of where they want to go and can indicate which route they would like to take to the destination. We are there to help highlight hazards along the way as this is a journey we help others with all of the time. We can point out obstructions or detours along the way. We can give a head’s up about what may be troublesome up ahead.

We don’t want you to have any surprises, we will advise you which route may be safer. The aim is for a smoother journey. You need to know what is going on and we will be there to help you navigate your way through foreign territory. We can map things out for you and will make useful suggestions. Whatever happens, we will be there for you and will do our best to understand and fulfil your needs.

Tell me what you need and we will strive to make things happen for you. This is an important final excursion that you are taking and we will be alongside you each step of the way. We know what changes to expect as we enter different phases of the trip. We are also there to provide support to the traveller’s loved ones to ensure they are kept up to date with each leg of the journey. To guide them through the transition points as everything continues to change.

All of the above is what you can expect from our self-caring rechargeable battery-powered Gentle Palliative Steadying system.

Palace of Care – Best Laid Plans

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Advance Care Planning (ACP) is recommended for everyone. It allows people to convey what is important to them. It can guide loved ones and health professionals as to what your wishes are in the case of you becoming incapable of expressing yourself. Such a situation is possible for anyone and thus it is recommended to be completed whilst you are well. Although it can be hard to imagine how you would feel or act in the event of severe illness or disability. ACP allows people to take some control of the end of their lives. This is what I want, this is want I don’t want. This is who I want around me. This is how I define what is quality of life for me. This is where I draw the line. It can be a confronting and difficult exercise to complete with your loved ones but it maybe a crucial method to communicate what you really want.

My patient had been diagnosed with MND (Motor Neurone Disease) over a year ago, and after attending the second clinic appointment they had introduced him to ACP. He read through the booklet with his wife, and it appealed to his organised nature. He always had a monthly, yearly and five-yearly plan in action. The doctor had said that most people would die of MND 18 months after diagnosis. This can mean time is running out, and this is not aided by diagnostic delay. All other illness have to be excluded before the diagnosis of MND is confirmed, for most people it is still a death sentence.

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Advance care planning week – webinar for consumers

Come along to talk to Dr Sonia and consumer Holli about advance care planning during Advance Care Planning week 2022. 11:00 24th March online

Palace of Care – The T-Shirt

Photo by Toa Heftiba on Unsplash

My consultant asked the young man, “What would you like us to call you?”

He answered, “Your highness.”

“Okay your highness, how have you been?”

That was an entertaining start to the therapeutic relationship which put everyone at ease, and allowed for an air of playfulness to come into the clinical encounter. The patient was in his late thirties and had come into hospital with severe pain. It was likely due to cancer metastases, and he was still recovering from his last cycle of chemotherapy when we visited him.

He talked about what was most important to him, spending time with his young son. This was whilst he was carefully mixing flax seed oil into a serving of yoghurt, as part of a cancer treatment diet that he was trying. He would try anything to keep himself going and wanted to spend as much time with his son as possible.

Despite all the treatments that he had received the cancer continued to progress causing ever more problems. The side-effects of the aggressive treatment were severe and included the loss of his hair. He said that he had always had good hair, and it was one of his personal trademarks since he was a teenager. Now he didn’t mind losing his hair, and he had even designed a t-shirt for the sake of entertaining himself and those who looked after him.

He loosened his dressing gown and revealed his creation. In bold font it simply said, “Hair by Chemo.”

Advance Care Planning International 2022 Webinar Series – “Advance care planning – what’s in the pill?”

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Following on from a successful digital conference in 2021, the Advance Care Planning International (ACP-i) Committee is excited to announce a series of webinars in 2022, focusing on how different healthcare systems are implementing advance care planning.

Each of these webinars will put a spotlight on one country, with invited speakers giving presentations which will investigate the different components and ingredients that go into successful ACP programs in their country or region. In other words, exploring “what’s in the ACP pill?” Webinars will be one hour in duration, with one or two expert presenters and time for panel discussion and Q&A.

The first of these webinars will go down under, with presentations from Australia (Tuesday March 22nd 10pm-11pm AEDT) and Aotearoa/New Zealand (Wednesday March 23rd 10am-11am). The webinars are free to attend, but registration is required through the ACP-i website.

The Australian webinar on Tuesday March 22nd will feature Jill Mann (Barwon Health ACP Program Manager) and Dr Leyton Miller (Queensland Health Palliative Care Consultant), with the session facilitated by Dr Craig Sinclair (University of New South Wales). For more details and to register, visit https://www.acp-i.org/

In a stroke of good planning (or was that good fortune?), the Australian webinar will also occur during National Advance Care Planning Week 2022. Advance Care Planning Australia coordinates this annual awareness-raising week, with a series of events being held around Australia, in person and online. The key message is ‘Your Choice. Now and Always.’ To find out more about events in your area, visit the Advance Care Planning Australia website.

As part of 2022 National Advance Care Planning Week, we hope you can attend and participate in this global conversation.

Guest Post – Naomi’s Notes – Mama

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Today was shower day. In preparation, I lit the fire and made the room nice and warm,  laid out her clothes so they would be nice and cosy to get into, just like my mother had done countless times over the years for all her children.

After showering, I raced her down the hallway in her wheelchair into the warm room and proceeded to dress her and blow dry her hair.  She was unable to transfer other than to put her arms around my waist and hold onto me as I put her into her favourite chair.

“Well,  now you have to pay me,” I announced.

She looked at me suspiciously until  I said the cost of the shower was two kisses.

She smiled and gave me five kisses and said,  “Oh I have overpaid you.”

“Don’t worry,” I replied, “I have change.”  I kissed her cheek three times;  She laughed just like she used to laugh and then I made her a hot cup of tea.  After the tea she fell asleep in her chair.  She looked exhausted from the effort of showering and slept for an hour.

When people came to visit she would try and sit up and talk with them but after a while she was just so exhausted.  Her kidney function was getting worse.

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