Palace of Care – Best Laid Plans

Photo by Pedro Miranda on Unsplash

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?”

Photo by Christin Hume on Unsplash

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

Photo by dominik hofbauer on Unsplash

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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Guest Post – Naomi’s Notes – Kindness

Photo by Eugene Chystiakov on Unsplash

Hi, my name is Naomi Lees, I work at Edmund Hillary School in Papakura. I met Dr James Jap a few years ago when he came to a meeting at school. I have really enjoyed Palliverse posts.  When James asked recently who would help I said I would and did nothing about it for six weeks except for the occasional pang of guilt for not doing what I said I would do.

I looked after my parents in the last two years before they died. These posts will contain some of what I learned.

So here is the first of my contributions:

Looking for Kindness

When I was at school  I was out on duty in the playground making sure the kids were safe in the playground.  Then two little girls came up to me and  one of the girls was new to the school and she was 5.  The new girl was crying loudly.   So I gave her a cuddle and asked her what was wrong  and she said to me.

“Oooh I’ve lost my friend.”

“Don’t worry,” I said, “I’ll help you to find her.”   

“What is her name?”

More tears then she said, “I don’t know.”

Then I said, “what does she look like?”

More tears then she said ………”She looks KIND.”

Bianca the other little girl who is 8, looked at me and we both smiled then I said very gently to her that Bianca knew all the kind girls so if she held Bianca’s hand and walked with her I am sure they would find her friend. Off they went in search of Kindness!

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Palace of Care – Limited time, big changes

Photo by Skyler Gerald on Unsplash

We had been expecting to admit our patient for a number of days. In the past week she had been troubled by bad pain in her back. We knew that the cancer had spread there already. It hurt her to walk, and she had peed her pants on the way to the toilet. She could not make it in time because the pain of walking held her up.

On admission some medications were changed and by the next morning, they had worked really well. She had slept well for the first time all week, her pain was well controlled, and she was happy to be away from home. Home was full of family, and it was hectic, three generations of family living in the same household, with up to 20 people around her at any time. It was easy to get lost in her own home. She appreciated the opportunity to rest.

Everything we told her was written in her notebook, she wrote down the conversations we had, the medication changes we had made. The notebook was where she made her plans, for everything. She knew that she was unwell, and had already taken it upon herself to plan her funeral. She had always done things differently in her life, and that was not going to change after death. She was planning to break from her usual cultural traditions, and was planning an European style funeral. She would not be going to the traditional place of mourning of her people. She was going to do things in her own way. We talked about Frank Sinatra’s song “My Way.” She jotted it down as something that she wanted to play at her funeral.

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Palace of Care – Late referrals to palliative care are still common

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We had only received the referral the day before. Our nurse went out to see the patient and found him to be likely dying, suffering from pain and great distress. His wife who had been a registered nurse for almost 30 years was still talking about taking him into hospital for further treatments. They were persuaded to come into the hospice by ambulance.

The junior staff had seen him and asked for me to see the family as well, as they just couldn’t get the point across. They thought that he was actively dying, but his wife and daughter were still talking about going into hospital for active treatments, whatever was available.

I walked carefully into the tension of the room and noticed that the patient was breathing heavily, was not able to respond, but otherwise looked comfortable. His daughter was breathing heavily, unable to respond because she was crying, and looked uncomfortable. His wife was breathing quickly, responded slowly to questions, and her discomfort showed on her face.

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Palace of Care – The Show Must Not Go On

Photo by Annie Spratt on Unsplash

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 – 5. Week One – Here’s the deal

Photo by David Cain on Unsplash

Thursday

I want you to be really honest with me, has the pain relief worked?

Yeah, I think it has, I’m moving better. I had four hours of sleep last night which is pretty good for me.

I’d like to increase your pain relief from 25 to 35.

Could we make it 30? I don’t want to be too sleepy.

Okay sure. If you disagree with my plan you let me know and we’ll change it. I will be guided by what you want or don’t want. That’s a sweet tattoo on your arm, is that your son?

Yeah, he was a cute baby. I became a dad when I was 20. My son will be five in two months, I hope that I’ll be able to see him start school.

Friday

Hey I saw you walking around before, how you doing?

Good man. I had the best sleep in the last two years. No pain.

Really?

Yeah, I feel good.

That’s great, if this keeps up we can start talking about going home soon.

It’s Fathers’ Day on Sunday.

Yeah, that’s right, we’ll see how you go, if you are still good, we’ll aim for home Sunday.

Monday

I just wanted to say see ya later.

Thanks man, for everything.

My pleasure bro, I wish you well.

[Fist Bump] [Smile with eyes, with mask on emoji]

Lessons learnt:

It is important to be honest with your patients, as you need to build their trust in you.

Allowing patients to share in decision making helps to empower them. Give them back some control, in an illness situation in which so much control has been stolen from them.

Make it clear that they can disagree with any of your treatment plans, and that you will listen to them and that within reason you will adjust appropriately according to their wishes.

Say what you mean, then do what you say.