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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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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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

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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

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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.

I think therefore I am? – SEP

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Ford Prefect says, “An SEP is something we can’t see, or don’t see, or our brain doesn’t let us see, because we think that it’s somebody else’s problem. That’s what SEP means. Somebody Else’s Problem. The brain just edits it out, it’s like a blind spot.”

The Somebody Else’s Problem field… relies on people’s natural predisposition not to see anything they don’t want to, weren’t expecting, or can’t explain.

From Douglas Adams’ Life, The Universe and Everything 1982

The SEP field generator is an incredible thing, where-ever you shine the beam, like an amazing piece of magic, suddenly the problem disappears and becomes someone else’s problem.

Sound familiar when you think of palliative care patients and their problems?

Other specialities do this to us all of the time, they leave work unfinished or not even attempted. They somehow know that us good-natured folks will make sure that things are sorted.

This isn’t really fair to us, but especially unfair to the patient. Where is the patient in all of this? Certainly not in the centre of attention.

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Palace of Care – 5. Down – The Primal Scream

Photo by Nsey Benajah on Unsplash

We talked and he looked to be in pain, not physical but emotional/spiritual/social pain. He wanted to stay at home with his family but he knew that it was becoming too much to handle for them all. The boys are still young, his partner has a significant health issue. He wanted to be at home but was worried that caring for him would put her under too much strain, she had already had a close call.

Usually the fire of anger was what he would allow to erupt, but instead he let out his desolation. His weak voice did not allow him to scream very loudly but he did so for five minutes. A raw primal scream from deep within his soul like a deeply wounded animal. Utter devastation unleashed as a whimper. The disease that had ravaged his body, only allowed a small strangled noise to come out.

We did not try to soothe him, and would’ve been lying to say that it was going to be all right. “Let it all out, you need to let it all out.” Tears were streaming down his face, into his beard, but he no longer had the hand or arm strength to wipe them away. We didn’t move, he needed this moment of catharsis, he needed this time to let out his deeply buried emotion.

He stopped screaming and started apologising, we said that there was no need to. We could see that what he had needed was to let it out, and we had allowed it to happen.

“I feel better.”
“I thought you would.”
“Thanks.”
“No worries bro, we’re good, let’s make a plan to get you home, but you need to have help, otherwise nothing will work. “

Palace of Care – A New Dawn

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I received an email from someone wanting to undergo an assisted death.

I replied with general advice that was available online on the New Zealand government’s assisted dying website.

The person replied outlining their situation. They had been approved for an assisted death by the national service. Their residential care facility which had been home for the past four months would not allow assisted dying to occur on its premises. Their local hospice had made it clear that they would not be an option.

I explained that we had initially planned to offer our venue for people in our catchment area, but would consider cases from elsewhere. I promised to consult my team, and we agreed that we would be able to provide a venue. An onsite meeting and tour of our facilities was arranged, scheduled for a time when the patient’s family would be available. This would be the first time that we would meet a patient accessing this service, which made us feel nervous.

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Palace of Care – What’s in a word?

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It was his second admission. 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 arrival he was 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 had seen dead ancestors.

I didn’t want there to be any surprises: I spoke in a quiet voice and tried to be as clear to them as possible, using simple English.

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.

When someone is dying everything inside can become all messed up, like he’s in a storm. He doesn’t know which way is up or down, and it might be really scary for him.

End of life delirium/terminal restlessness.

When someone is dying, they become less clear in their thinking, and sleepier. That is Nature or a higher power’s [palms open being raised towards the ceiling] way of protecting the dying person from having to have the full 3D/HD experience of dying.

He could see that his own distress was causing distress to his family, which caused him further distress.

I will change his medications to relax him. We’re going to calm it all down, and we are going to get him through this. We’re going to get you all through this.

I was caught off guard when he suddenly opened his eyes and reached out to shake my hand in both of his. He thanked me for what I had done for him.

Nek minnit – [I was being hugged and I hugged him back.]