Guest Post – Naomi’s Notes – Waiting for an Invitation

Photo by Joshua Lanzarini on Unsplash

Two things are certain in this life,  we are born and we will one day die.   The time of death is uncertain, and in our life between these two we try and be of benefit to our families, community, country and the world at large.

We are all part of the same human family; we are all interconnected.  This has been highlighted  over the past two years with the pandemic.  News bulletins brought us graphic images of family and friends mourning because they were not able to be with their loved ones before death and for the funeral.  Harrowing images of countries being in lockdown showed us so many people dying daily and corpses being loaded into trucks heading to the cemetery for mass graves.   

For a while the world went quiet as we all felt the sorrow of people who were unknown to us, as well as the fear of what lay ahead.  We each dealt with it differently according to our cultural background and conditional on whether we are able to face our own mortality.

Fear is a feeling that comes usually because we don’t know about the issue that is confronting us, we have no experience with it, and we can’t predict what is going to happen.  We don’t know what to do.  Losing confidence in ourselves, we get shaky.

It is an indictment on us all that we can talk to someone on the other side of the world and even in space through technology, but because of fear avoid face-to-face communication with a work-mate or someone we see every day, or people within our own family… but especially someone who is dying.

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Two online PEPA workshops for General Practitioners – 23 July 2022

PEPA have two workshops to advertise in your regions. Eventbrite is open for registrations.

Name of workshop: Palliative Care in General Practice

Day and date of workshop: Saturday 23rd July, 10.00am – 12.00pm

Venue: Online

Register at this link: click here

This workshop is for General Practitioners based in Victoria (Australia) who care for people with a life-limiting illness. Practice Nurses are also welcome to attend.

Topics

• Recognising patients who need palliative care

• Communicating about end of life issues

• Voluntary assisted dying in Victoria

• Assessing and managing common symptoms

• Advance care planning

Facilitators:

Dr Rowan Hearn – Clinical Director Palliative Medicine, Calvary Health Care Bethlehem

Dr Rupert Strasser is a palliative care specialist and geriatrician, with Calvary Health Care Bethlehem. He is passionate about providing excellent clinical care for all. Rupert’s clinical interest includes palliative care for neurodegenerative disease.

PEPA is an accredited educator with RACGP (workshops are eligible for category 2 CPD points)

Date: Saturday 23rd July 2022

Time: 10am – 12pm

Online – a WebEx link and guidelines to access will be provided prior to the workshop date.

Workshop Pre-requisite:

To maximise learning PEPA offers 6 online GP learning modules. These modules have been developed by palliative care experts and reviewed by clinicians with extensive palliative care experience. They can be accessed by setting up an account at the PEPA Palliative Care Education and Training Collaborative: https://palliativecareeducation.com.au/

PEPA is an accredited educator with RACGP. Workshops are eligible for Category 2 CPD points

Inquiries:

PEPA Administration – E: pepa@svha.org.au

Margarita Makoutonina, Calvary Health Care Bethlehem

M: 0425 774 195

E: Margarita.Makoutonina@calvarycare.org.au

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I think therefore I am? – Poem of Power

Photo by Mark Duffel on Unsplash

Rudyard Kipling’s poem “If” has helped me through many difficult situations over the years, especially the first two lines of it:

“If you can keep your head when all about you   
    Are losing theirs and blaming it on you,“ 

I need to be the calm one, the calming influence within chaotic situations.

I have to be prepared to arrive and take command of the situation. To try to slow things down and soothe any suffering that may be occurring.

Treating everyone in a polite and friendly manner no matter how extreme their situations may be.

Keeping a cool and focused head, when everyone else is flailing away. To be a calmness hotspot, broadcasting it around myself.

They can blame me for shortening the visit times, “the doctor said my visitors could only stay for 15 minutes as he wanted me to rest more.”

I am a product of my training; medical, physical, mindfulness, including daily suffering doses from cold water exposure, fasting, Brazilian Jiu Jitsu and much more.

Maintaining my own sense of humour whilst being able to coax out laughter from the most unwell people in the world.

I studied in order to be able to find myself a job. I started working, found my calling and I now am a passionate member of a cause.

I continue to learn each day and am privileged to be able to learn from the patients and families that I deal with.

What does the future hold?

Opportunities.

Palace of Care – Prelude to A New Dawn

The illness had affected her speech making it difficult to understand. With some effort I could tune into what she was saying but there were some things that I could not understand. It was frustrating for her as her mind was sharp but the words would not come out right. The nerves controlling her vocal cords and her breathing muscles were not doing their job any more. She tried to tell us about her suffering but she could only use short sentences. She hadn’t been able to raise her voice for years, and even if she wanted to scream out loud, only a whisper would’ve been heard.

Her pain was not physical, she could handle physical pain and simple pain relief would have helped. The agony she felt she could no longer describe in words. Her sense of wholeness had long been destroyed, her ability to exist as a person had been torn apart. Mere words could not describe the torment she had lived with for six years. I tried to listen to her actively, I tried to read her situation, her illness ravaged poker face only provided scant clues. Intellectually I had an inkling of what she had lost, but I could not feel it during our first meeting. I needed more information before I could understand.

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Guest Post – Naomi’s Notes – Offering

It was a week before Christmas, a special birthday celebration and instead of just a few candles we offered 1000 butterlamps.  These were lit before the start of the ceremony which concluded with the traditional Happy Birthday song for Rinpoche.  

After our shared lunch I walked slowly up the stairs to the Temple.  From the bottom of the stairs in the distance I saw a young woman  with her two children aged 6 and 8. I greeted her on arrival and she asked if she could light some butter  lamps.  She looked close to tears, and I asked her, “What’s the matter?”

“I need some help, my son died last week and I need some kind of spiritual help that’s why I came here. Is there a Lama here? I need to talk to someone.” Then the floodgate of tears was unleashed.  I put my arm around her and let her cry. Her two young children looked worried. I had some home baking upstairs and asked them to bring it down for a cup of tea. 

When we were alone she shared  that her 23 year old son had committed suicide.  His siblings were told their brother had died.  They were too young to understand and she didn’t want to burden them with it. As the children came bounding down the stairs I offered them something to eat and suggested they play outside on the grass where they could still see us whilst I talked with mum.   They appeared to be relieved to have  another adult to talk to their mum. 

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Palace of Care – Terroir

Photo by Rusty Watson on Unsplash

We celebrated International Nurses Day last Thursday with a special breakfast with lots of goodies for all. Nurses are a crucial part of any palliative care and hospice team and it was great to celebrate them with some special treats. Individual paper hats were made available each adorned with little red Superman style shields, thanking them for being heroic in the jobs that they do. Special little bags of sweets were prepared and handed out to all of our staff.

There was a buzz of mirth and fun throughout our inpatient unit and this was noticed by the patients and their families too. One couple commented on it being nice to hear raucous laughter happening outside of their room. It was nice to be staying in a healthcare institution where people were enjoying each other’s company at work. This couple had stayed in many different healthcare institutions over the past years and thus spoke from experience.

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I think therefore I am? – What’s the best thing you did today?

Photo by Mark Daynes on Unsplash

Sure it’s great to ease suffering of some sort be it to dampen down someone’s pain, or to improve their nausea, or to help them with their breathlessness. Taking away a negative feeling is a good thing to do. Making a bad situation less bad is a worthy thing to do.

What if you can make someone’s situation better, even momentarily? That’s what I enjoy doing the most, having a laugh with my patients. Sure they may be critically unwell and may only have days left to live but they are still human beings and still want to be treated like a person. Finding something that can make them smile or make them laugh may just let them escape for a few seconds. A short moment of enjoyment is something worthy of pursuit.

My patient was dying of recurrent aspiration pneumonia. His swallowing had been compromised for weeks. Food and drink would be aspirated into his lungs, causing life-threatening infections. Even when he didn’t eat he would choke and aspirate on his own saliva. He was constantly breathless as his illness had stopped his breathing muscles from working. This situation could not go on. The nurses asked what we should do if was to aspirate further. I said, “We’ll keep him comfortable.”

I asked him if he felt like eating or drinking anything, and encouraged him to do so. It would not make things any worse, but might give him a small amount of simple pleasure. I suggested he could have anything that he wanted to drink, including alcoholic beverages. As I was working I couldn’t join him but said that he could have one for me. Through his non-invasive positive airways pressure ventilation mask he chuckled and his whole chest shook.

He wanted to drink Coca Cola, and to eat ice-cream. I told him to go for it, hey why not make it into an ice-cream soda? It wasn’t going to hurt him, and if he enjoyed it even better.

I’d be keen to know what was the best thing you did today?

Palace of Care – Straight Up

Photo by Brett Jordan on Unsplash

I felt it as soon as I arrived in this hospice. The wairua (spirit) felt good, and I started laughing. This place is lovely, the staff are so nice here Doc.

Were you scared of coming in?

Nah, I had heard good things about you fullas. And it was all true, you guys make me feel comfortable.

What did they tell you in hospital?

The doctor was straight up, told me what was going on. That it was bad cancer, that there was nothing else that could be done. No bullshitting like some of the other doctors.

Hmmm?

I went to the clinic and the doctor told me that there is nothing else that can be done. Then he talked about a possible treatment. I’m not sure if it was me that was confused or the doctor. I just want people to be honest with me. I’m not scared, I know I’m not well. We’ve lost a lot of whanau (family) in the past. I know what is happening, I’m dying. Can you be straight up and honest with me?

Sure. How are you really feeling?

A bit sore, I think I need the extra pain relief. Hey Doc, thanks for listening to me.

No worries, please tell us when you are not comfortable.

I think therefore I am? – Hello

Photo by Alexander Shatov on Unsplash

Working in a culturally and ethnically diverse area over the past ten years I make the effort to try to greet my patients and their families in their native language. My pronunciation may not be great to start with but I try. Even if it means looking up the greeting online before I walk in the room. How would I feel if I was admitted to a hospice in my adopted home country? What would make me feel welcome or not?

A small gesture to show that I am trying to understand you and who you are.

Here is my part of my collection of Pacific Island hellos in no particular order:

Fiji

Bula Vinaka
Namaste

Tonga

Mālō e lelei

Samoa

Talofa lava

Niue

Fakalofa ahi atu

Tuvalu

Fakatalofa atu

Tokelau

Mālo ni

Cook Islands

Kia orana

Aotearoa New Zealand

Kia ora

Australia

Gidday

I’m always keen to add to my collection if you have any suggestions.

Palace of Care – A difficult post to write

I started writing this post two years ago, and I tried to complete it this time last year but I wasn’t able to. I have finally completed it today, and it serves as a sneak preview chapter for my upcoming book Bedside Lessons which will be available for purchase on Amazon Kindle on 09 June 2022.

Photo by Sooz . on Unsplash

Death Jumps The Fence – I miss my mum

Every Friday I usually wear a fish neck-tie and chips socks, this is in honour of my parents who ran their fish and chip shop for 35 years. Friday was always the busiest day thanks to ancient papal decree. Mum loved to work in the shop and chatted to generations of families who were regular customers. Mum’s eyesight was destroyed by an autoimmune condition called Uveitis. This stopped her from driving her car that she had owned since it was brand new. A red 1982 Toyota Corona – Popularity has decreased since 2020. Not being able to drive limited Mum’s independence. Her partial blindness in one eye, and near total blindness in the other didn’t stop her working. Somehow she would still cross one of my hometown Napier’s busiest street to walk to the shop. She loved serving her customers and always had a friendly smile for them. Apart from rheumatoid arthritis and a blood disorder, Mum’s health was good until her final illness.

It all started early one morning, when severe back pain woke Mum up. She was rushed to hospital and couldn’t move her left leg. The initial differential diagnosis was of a stroke but the head scan did not reveal any brain issues. Further tests discovered a blood clot which had blocked the spinal artery which supplied the area of spinal cord controlling the left leg. Mum had been troubled by a blood disorder for the previous five years. This led to her blood being thicker than usual, which may have caused the clot formation. Blood thinning medication was started. Other tests discovered a suspicious mass lesion in her chest. A biopsy was requested.

Whilst awaiting the biopsy Mum was reviewed by a lung doctor who bluntly told her that she had cancer, and that she would need to have intensive treatments. These would need to be done at the regional cancer therapy centre, two hours drive away. This sent my Mum, who was always a bit anxious, into a tailspin. She stopped eating, couldn’t sleep, and was inconsolable.
Mum had a good memory throughout her life, but in the months prior to this illness she had started having short term memory loss. Looking back at this her illness had likely taken its toll on her memory. Two days after the bluntly delivered unconfirmed diagnosis Mum had forgotten what had been said, and was able to continue her recuperation. She knew that a biopsy had been arranged but could not remember what for. The prospect of it terrified her.

I flew back to Napier on a Friday morning to help Mum get through her biopsy. She was scared and needed her hand held. The radiology team who were performing the biopsy ushered me in the room, and I gently told Mum to take deep breaths. I explained to her in Mandarin Chinese, “There will be some pain from an injection. Then your skin will go numb. They’re about to put in another needle. It shouldn’t hurt, let me know if it does. There will be some pressure but it shouldn’t hurt.”

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