Palace of Care – Malo e lei lei

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I make an effort to greet patients in their own language as often as I can. Over the years I have learned many different greetings. Some of them are used frequently and I can now pronounce them fluently. Others are used more rarely but a thirty-second internet search can provide me with enough information to say hello. A small effort on my part but a clear statement that I am trying to understand the other person and where they are from. You may be thinking, “So what, what effect does it have?”

I was meeting our patient for the first time. I had been away and the rest of the team had gotten to know her over the past weeks. They all said hello to her and she said hello back with a small smile. It was my turn and I said to her, “Malo e lei lei.” Astonishment swept across her face before her eyes and her face lit up in a sunburst of a smile.

“You know my language?”

“Just a little bit.”

“Oh thank you so much, it was so nice to hear.”

The rest of the conversation went well, rapport was established when I spoke those four words of greeting in her native tongue. The pronunciation doesn’t have to be perfect, it’s the effort expended in trying to use their language that is appreciated. Later in the conversation, I used the word for pain, “mamahi,” and her huge smile was back again.

My late mother had lived in New Zealand for over five decades and spoke English every day in her work life as a shopkeeper. During her hospital admission, she was looked after by a Chinese-speaking nurse and it made such a difference. She felt understood not just linguistically but culturally. She felt safer.

Let’s all make an effort to help our patients feel safer when under our care, even a few words can make a difference.

Palace of Care – At Any Time

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“Good morning, I’m the specialist here. What’s your name? This is your daughter. How old is she?”

“She’s eight.”

“You’ve all had a rough night.”

“Yeah, every time they turn him he has bad pain.”

“There’s been a lot of changes over a short time.”

“Things have been happening too fast over the last weeks.”

“We need to make some changes to make him more comfortable. It would be better for him to have a catheter, then he won’t get wet and we won’t need to change his pads so often.”

“Okay, let’s do it. His breathing has changed, is it a sign that things are getting worse?”

“Yes, everything is getting worse. His body is so unwell that it can’t control his breathing anymore. His breathing gets quicker, then it slows down, and then there are gaps. As he becomes more unwell the gaps become longer and longer. His hands and feet will start to feel cold as his circulation worsens.”

“How much time do you think is left? Should I call the rest of the family in? They visited last night.”

“It might just be hours to short days left, but he could have much less time if the changes continue happening faster. He could go at any time. It’s a good idea to call the rest of the family in.”

“We’re going to change the medications to control the pain better. Since I’m already gowned up I’ll put in the catheter now. I’ll ask my team to bring the equipment in.”

“Okay, I’m going to step out to make some phone calls.”

“Hey man, I’m going to pop in a catheter to catch your urine, it’ll keep you nice and dry. Then we won’t have to change you as much which won’t be as painful. We’ll keep a close eye on your wife and daughter. Your daughter painted something nice for you, looks like a fairy with a magic wand with a star on it, in purple. The words say I love you Dad.”

“I’m just going to check the pulse on your neck. Hmm, I can’t find it. I’m going to listen to your heart and lungs now. I need to shine a light in your eye. Same on the other side.”

“What’s happened?”

“I’m very sorry for your loss.”

“Mummy, why isn’t Daddy breathing?”

“I’m sorry your Dad has died. He was trying his best to hold on for you, but the illness has been too much for him to handle. Now he doesn’t have any pain and he is heading up to heaven. He’ll still be keeping an eye on you and will be able to hear what you say to him.”

Tears were sniffed back around the room.

Palace of Care – Struggle

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“You’re really breathless.”

“Yeah. I’m. Trying. To. Calm. Down.”

“Hard to swallow too?”

Nod.

“You’re working hard to breathe. You’re having to shrug your shoulders up.”

“Yeah, Mum’s like that in the morning. She’s better in the afternoon.”

“I’m seeing quite a difference in Mum since I last saw you both a few days ago. I’m worried about her. I think we need to put a hold on the discharge plan. We need to calm things down first.”

“Okay.”

“Are you okay staying with us a bit longer?”

Nod. “I. Love. This. Place.”

“We’ll see how you go, one day at a time. If things become stable then we can talk about going home again. If things get worse, it might be better to stay here.”

Nod.

“No matter what happens we want to get you more comfortable, and let your daughter have a bit more rest.”

“Thanks. Mike.”

“You’re welcome.”

Palace of Care – Fade to Yellow

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In the last days of her life, she was visited by close friends and family members. She conversed with them and still shared her sense of humour with them. To some of her oldest friends, she said her final goodbyes.

One of her best friends asked me if it would be okay for her to have some champagne. I said I would allow it but she wasn’t allowed to drink alone. He went off to buy some. It had to be Tattinger Champagne, nothing else would do. I said she could eat whatever she felt like. A question was asked about cigarettes and again I had no objections. She was dying and she could do whatever she liked that would bring her some pleasure and normality.

“How can you tell that time is short?”

“She’s been deteriorating every day. She has become unclear in her thinking and is needing to sleep more. These are all signs that death is coming soon.”

“How long do you think she has got left?”

“A few days ago we thought she might only have days to weeks left to live. Now I think she only has hours to days left. She could die at any time.”

“Who do you think can come and visit her.”

“I’d recommend only immediate family only and her closest friends. Whomever she wants to see.”

“Will you let our brother know?”

“Sure, we’ll make contact with him.”

The next day four members of the hospice clinical team painted their nails yellow and orange to match their patient’s fingernails. When she woke up she was shown the photos and she was able to enjoy the yellow-clad doctor’s finger and toenails which were all highlighted in bright yellow. The nails gave her and the family something to smile and laugh about in between the tears.

The next morning the Polish team, who were not from Poland, were about to go into the room when the nurse came out to ask the family to come in urgently.

“She’s about to take her last breath.”

The clinicians made way for the family.

She died with the voices of her family telling her how much they loved her.

I think therefore I am? – Homeostasis

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Humans are good at maintaining homeostasis and keeping things in balance. This includes the levels of various biochemicals in our bloodstream, blood pressure, body temperature, and sitting/standing/walking balance. The human body has many different organ systems with various functions and constant adjustments are made to keep us all in good running order.

When you are unwell the homeostasis may not work as well. You end up with fevers and may become dizzy and lose physical balance. Emotional balance can also be upset and uncomfortable feelings may be revealed. When things get really out of balance physical falls can occur. A high blood calcium level can be dangerous. Threatening both quantity of life, and quality of life.

The balancing act of life cannot be continued, the tight rope has become too steep to climb, the distance too far. Despite everyone’s best efforts, nothing can stop the fall. The situation’s gravity reminds us that what goes up must come down. How arrogant are we mere humans to think we could control Nature? State-of-the-art treatments may be offered but there aren’t many guarantees in this life. In the end, we all fall and cannot get up again. We can’t stop the fall, but maybe we can soften the impact of it with the care we provide. Let’s keep on trying.

Palace of Care – A Reluctant Patient

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I first met our reluctant patient in the outpatient clinic with his girlfriend. It had taken a number of phone calls before he would come in for assessment. He was scared of hospice and had resisted his Oncologist referring him to us. He didn’t know what we were about and what he didn’t know frightened him.

He had been unwell with cancer for over a year with severe pain making him unable to sit or lie down for more than an hour at a time. Sleep was difficult for him and he was woken up several times a night by burning pain that spread down his right leg. He wasn’t keen on any changes in medication, and it took much negotiation for him to allow us to increase the doses of the pain relief agents he was already taking. He didn’t want to consider anything new, just yet. As his pain was so severe I offered to admit him into the inpatient unit but he wanted to stay at home.

Over the next month, his pain did improve but any relief would only last for a few days at best. We again offered to admit him for pain control but he still wasn’t ready. Some weeks later the pain had worsened bringing tears to his eyes. His mother and girlfriend were exhausted and felt helpless as they couldn’t help reduce hisWith encouragement from his mother and girlfriend he agreed to be admitted.

We started him on a different opioid that afternoon. The next morning he was full of smiles. He told us he was pain-free for the first time in two years. He stayed a few more days as we helped him with other issues, and then he went home. As well as good pain control we had built a trusting relationship that would help during his next admissions.

Palace of Care – A Warm Welcome

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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 – My kingdom for a horse…

Stig Nygaard Pårup  Christmas 2010

Stig Nygaard
Pårup
Christmas 2010

A few years ago I had formulated a plan to reunite a patient, who had been in inpatient care for a number of months, with his horse who I had been informed, he missed dearly. Something had been lost during the clinical handover – the patient had actually sold his horse some months prior. Instead I arranged for him to receive the Trackside horse-racing channel, and assured him that he could do phone-betting. I filed the plan away in the recesses of my brain, and looked forward to bringing it out again if the opportunity ever arose again to make use of it.

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