Category Archives: Practice

Palace of Care – A Warm Welcome

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Photo by Jen Gunter on Unsplash

I had never met her before but I had been told she was originally from the Netherlands. I wanted to make her feel welcome to our place and I had selected an orange face mask to wear. I was told of her arrival and asked my Dutch colleague how to greet and welcome her in Dutch.

A faded washed out looking lady sat in her wheelchair, accompanied by her daughter, son and his wife. Her skin looked translucent and had a slight grey tinge to it. I bent down so that our eyes were level and said.

Hoi daar (Hello there)
Welkom (Welcome)

She looked up at me with her dull eyes and there was the slightest hint of a smile in the corners of her mouth.

We wheeled her into the bedroom and with great effort and assistance from her son she was able to climb into bed.

I asked what she had done for work, her son could see his mother was too weak and tired to answer and said, “Mum was a nurse, in the last half of her career she worked in mental health.”

She needed a line inserted into her arm, this had been difficult before the chemotherapy had made the veins hide even more.

To put her at ease I talked about my first job after graduation. Psychiatric house officer, where I had to take care of the physical needs of over 40 inpatients. A busy job because a lot of the patients had many physical ailments and were overall people who did not take care of themselves well.

I recounted the first patient I ever examined. A man who was naked and stood in the centre of his bed with his arms outstretched in the crucifix position. He couldn’t follow my instructions as at the time he was incapable of conversing in any of the languages of the Planet Earth.

My next task was to take blood from a patient with suspected Neuroleptic Malignant Syndrome. This is a rare but potentially lethal condition that can occur in unlucky patients who are on anti-psychotic medications. Blood tests are needed to confirm the diagnosis. The problem I was faced with was the patient had been in a catatonic state for over a week. He was cast on his bed in the foetal position with both of his arms flexed towards his chest. I wasn’t able to access the veins of his arms at all. The first blood test I ever took as a new doctor was from the patient’s right foot.

These stories elicited a quiet chuckle and another wisp of a smile from my patient, who said, “My patients were always up to many antics. I can see you’ve been up to some yourself.”

I smiled and winked at her as I left her to spend some time with her family.

Palace of Care – Calling The Shots

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Photo by Marten Bjork on Unsplash

I asked her, “How are you doing?”

She was dozing off in her chair and her partner answered, “She’s okay, just really tired.”

“You had a lot of pain last night, you still look sore at the moment.”

“No, she’s not in pain, sometimes her face just looks like she’s in pain. She’s pretty good at the moment the cancer lumps in her tummy were sore before, now they are okay.”

“You were on the pump before, did it help your pain?”

“Yeah, it did help my missus’s pain, but then we went to the traditional healer and he told us to stop the pump. Since then the pain hasn’t been as bad as it was. We stopped the pump last week.”

“You’ve needed seven extra doses since yesterday. I’m worried we aren’t controlling your pain enough.”

“No, you are doing all right. My missus will tell you if she needs more. She wants to call the shots.”

“How long you guys been together?”

“16 years.”

“Cool, how did you meet?”

“At church. She was a church girl, me I was a wannabe gangster. My missus straightened me out. Now I’ve become a workaholic, I work for my family, that’s the most important thing for us. To give our kids a good upbringing.”

“You guys make a good team.”

“It’s my missus, because of her I changed for the better, it took her five years but she sorted me out. She’s my boss.”

“Were you guys scared of hospice before you came in.”

“Yeah, we tried not to come in for the last couple of weeks. We wish we had come in sooner. She hates the hospital. She wasn’t sure about hospice.”

“Are you still scared of hospice.”

“Nah, it’s a good place, you guys are taking good care of her, and the whole family. We feel safe here, you guys listen to us. In the hospital they just kept giving us bad news, and then more bad news. And just when we thought we’d heard it all, even more. My missus just wants to make the most of each day, but we know how unwell she is. This place would be a good place to be at the end. She feels safe here, you guys treat us really well. We are still praying for a miracle.”

“You keep on praying. We just want to try to make her more comfortable. I think we could do better with her pain control, we may need to start the pump up again.”

“My missus wants to stay off it, but if things became too bad, if you thought she’d really need it, it would be okay to start it again.”

“Okay, we’ll try to keep her off it, try to do things her way as much as possible, but if things get really bad, we’re not going to let her suffer.”

“Yeah I just want her to do what she wants.”

“Do you have any questions?”

“Yeah. Do you think you could help us, ummm, we’ve been together a long time, and we had planned to get married last year in our backyard. But then she got really sick, and ended up in hospital, again and again. Do you think you could help us arrange for someone to come in to marry us? We just want it simple.”

“Yeah sure man, we can help, it’s been a while since we’ve had a wedding here. We’ll get the team going, we’re all keen to help. Just remember it’s your wedding, not ours.”

“Thanks, maybe if we get married then she’ll have a miracle.”

Palace of Care – Prognostication Scanner

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Photo by National Cancer Institute on Unsplash

One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings. 

Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.

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Palace of Care – Family Reunion

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Photo by Laura Fuhrman on Unsplash

His sister and nieces pushed him in via wheelchair. His skin was a yellowish grey colour. According to his family it had been a huge change from when he had arrived in town last week. Then he had been well and was able to dance with his nieces. Now he couldn’t walk without assistance as he was too weak and fatigued.

He’d been diagnosed with end-stage cancer only months ago, and arrangements had been made for him to go into residential care. As he deteriorated, his elder sister and her daughters wanted to look after him. They picked him up from his residential care facility and moved him into his elder sister’s house in Auckland.

Over the course of his first week with his family he became more unwell. Nerve related pain from his cancer worsened and led to his hospice admission. His medications were adjusted to make him more comfortable. The family arranged for a reunion. His elder sister came down to see him.

All he wanted to do was sleep. He had no appetite.

He enjoyed the family reunion, it had been years since he and his siblings had been in the same room together.

On his final day he became comatose. His older brothers came to see him in the morning, after travelling two hours by car. They talked about when they had all been young. I explained that he was critically unwell and could die at anytime.

His sisters came back to see him, and within minutes he had taken his final breath.

Rest in peace family man.

Palace of Care – Prelude to A New Dawn

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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

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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?

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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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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? – SEP

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Photo by NASA on Unsplash


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

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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. “