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.

I think therefore I am? – Greetings

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I work in one of the most ethnically diverse areas in the southern hemisphere, South Auckland. There are people from many different places who now call this area home. English may well be a second, third or even fourth language to many of my patients and their families. Many different native languages are spoken and on any given day our inpatient unit may be full of people representing many different groups.

I make an effort to learn how to say simple common greetings in the native language of my patients. Over many years I have gathered a list of these greetings. If I don’t know the standard greeting I will resort to an internet search for the appropriate greeting before I meet the patient. A simple “hello” in their native language is usually appreciated and is the first step in building rapport. If I know more words in their language I’ll make use of as many as I can during the rest of the consultation. When trying to make a connection you usually only have one shot, make it a good one.

I think therefore I am? – Speed Dating

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Recently I was at a research meeting in my role as a clinical advisor. In the gathering were a number of kaumatua (Māori elders.) We were all asked to share our pepeha, our introduction. Each member of the group was given time to talk about themselves. Where they were from. Who their family of origin was. How did they get to Aotearoa New Zealand. Which mountain and river they are connected to. The kaumatua in the room listened intently to each person’s story and they were actively trying to find connections with their personal stories. It was almost like speed-dating, trying to build rapport, to build connections between previous strangers. The Māori call it whanaungatanga – getting to know each other. Something that is really important for people who are planning to work together. 

Again this makes me think about how we do things in the clinical realm. When we first meet our patients and their whānau/family each party are strangers to the other. In Western medicine the getting to know each other is usually one-sided. We want to know as much about the patient as possible without giving away much about ourselves. What would it be like if we introduced ourselves through a pepeha? Would it lead to more opportunities for human to human connection? Could the establishment of rapport possibly lead to the establishment of trust? You know what? I’m going to give it a go. I’ll let you know what I find out in a future post.

I think therefore I am? – Why Should They Trust Us?

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The patient arrived and looked as unwell as she had sounded on paper. Advanced end-stage illness, worse for wear after many weeks in hospital. Poor sleep night after night. Recurrent bad news relayed, unclear if understanding had been checked on or not. The standard restaurant question, “how’s your meal going?” is not asked in most clinical settings. I was told they appeared wary and slightly suspicious of what we had to offer. They had just met our team, they did not know us, we did not know them. They were assessing us as much as we were assessing them. We were not there to be opponents or combatants. We needed to connect in order to work together on the same team. If it wasn’t for the patient, none of us would be in the same room as each other. We were strangers who needed to try to collaborate with each other.

First impressions count. I relaxed my control of my Kiwi accent and let my inner hometown boy speak. I slipped in as many indigenous words as I knew to make it clear that their culture and traditions were welcome here in our hospice. I mentioned that a Chinese dude would be leading the singing practice the following morning, songs written in their language. “Please join me, I need all the help I can get. I’m tone deaf, I don’t understand what musical keys are, but I am loud. I once had singing lessons, but my wife asked me to ask the teacher for a refund.” The sound of our shared laughter was the background music to our rapport building project.

“We’re going to take things one day a time. We’ll get to know you. You’ll get to know us. We’ll all work together to get our patient/family member more comfortable.”

Trust has to be earned, one interaction at a time. We may only get one chance to connect. Give it your best shot.

Palace of Care – Checking In

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How’s your pain today?

It’s not bothering me. It’s my tummy that is uncomfortable. I feel like I need to poo but it won’t come out.

Okay, it’s good that your pain is better controlled. We’ll have to work on your poos today. What else is troubling you?

I’m just so tired. Don’t have energy to do anything. I can’t even get out of bed.

Yeah, they told me you hadn’t been out of bed for a while.

That’s all I want to do, to get better so I can get out of bed and walk around a bit.

Okay, we’ll keep on trying to make you more comfortable.

Should I go for the radiation treatment?

How did it go the last time you had it? Did it help your pain?

Yes it did. Do you think it will help me this time?

Maybe it would, if you’re feeling up to it you might as well get it. It might help your pain more.

Okay, thanks Doc.

You’re welcome. Do you have any questions?

When can I go home?

If you keep on improving like you have, maybe after your radiation treatments. Give you something to aim for.

Okay. You’ll remember to help me with my constipation right?

Sure will.

Palace of Care – And Then There Were Two

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He didn’t want his wife to be admitted to hospice. She had been ready but he was scared. We had offered admission a few days prior but he had said no. They agreed to come and have a look at our inpatient unit.

On arrival, they realised there was nothing to be scared of and agreed to stay for a symptom control admission. The pain had been worsening and the wife had been reluctant to take any medication as she was worried it might worsen her liver impairment. They liked the safe room we had to offer, and were happy to stay.

Over the next month, our patient only left her room to have investigations or procedures done. We encouraged her to spend at home and we would hold her bed but to no avail. She didn’t think they would cope at home. The thought of leaving our place freaked them out.

Everyone was saddened by her death, none more so than her husband. After we farewelled her, he thanked us and said that if he was dying he would want to die at our place as we had looked after his wife so well.

Palace of Care – Singing Together

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His grandmother had never learnt English, and all conversations at home were in the indigenous language. At home, he also learnt another language, the language of song. He was one of the guitar players and could sing traditional songs in their language. It was important to pass on his culture and he became a teacher, passing on his knowledge to the next generations. His ethos was full integration, two cultures living together in harmony. That’s how he raised his children, and to provide for them, he moved overseas in pursuit of a better income.

He missed his home and he craved being able to talk in his grandmother tongue. He would visit his cousins as often as he could. Grandmother’s rules applied and only their native language would be spoken in their home. He had to translate for his wife to understand the jokes and conversations. His family ended up in both countries, and during any reunion, the guitars would come out and the favourite songs would be sung together.

The songs kept him going during the first cancer. The treatments were rough, but he completed them, and they worked. Things were different with the second bout of cancer. Nothing went well. The cruellest thing of all was the cancer’s effect on his swallowing and voice. Two of the things he loved the most were taken away from him. He couldn’t eat his favourite foods, and he couldn’t sing his favourite songs. More and more bad news from the doctors. They told him time was short, that there were no treatments left. He told them he wanted to go home, that he wanted to be with his family for the end of his life. The team wasn’t sure if he was well enough to make the trip but prepared for it anyway.

He couldn’t sleep the night before the flight home, he was too excited. He didn’t sleep on the plane. There were various delays which meant he didn’t arrive at the hospice until late evening. He was pleasantly surprised by the staff greeting him in his language. The family visited and they celebrated his safe return. He was exhausted but the thrill of being together with his family in their home country kept him awake into the early hours of the next morning.

He met the rest of the medical team the next day, and they used more words from his language. They invited him to their singing practice scheduled for the following morning at 9.15 am. They all looked surprised when he turned up sitting in his wheelchair. The assembled staff was like a United Nations assembly. Though they were all of different ethnic origins to him, they were singing songs in his language. His family joined in the singing, and then he gave his critique. “A+ for effort, just need more practice with some of the songs. It’d be better with a guitar, I’ll get my daughter to play next time.”

They made him comfortable and kept things as simple as possible. He went home to his family after joining the following week’s singing practice, this time accompanied by guitar playing. The hospice held his bed for longer than usual, but his family looked after him well and he didn’t need to go back. Generations of family and old friends visited him with their music and laughter.

The pain worsened, and he was worried that he was about to die. He wanted to go back to the hospice, he trusted that they would make him more comfortable. His family attended the weekly singing practice and were encouraged to play their guitar and sing even more. Beautiful harmonies were heard from his room in the afternoon. His family surrounded him with love and the last thing he ever heard was the harmony of them singing to him, “The Lord’s Prayer.”

Palace of Care – Phone a Friend

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I was asked by a friend of our hospice to phone their cousin. This was because the cousin knew their favourite cousin had a long association with my hospice. The cousin’s friend of over five decades had always been unwell. They had inherited a genetic issue which led to lung damage from a young age, which led to chronic lung infection and scarring. A life lived in between many hospital admissions. The lungs had an unwelcome guest in the form of smelly bacteria, which had worsened already impaired breathing. As if there wasn’t enough on their plate along came cancer. The accumulation of all of the above resulted in worsened quality of life and increased struggles with activities of daily living. There was only so much one person could tolerate. A conversation about assisted dying was had with their family doctor as the law had allowed for this as a legal option for end-of-life care. The doctor assessed their patient as eligible. The second assessor had a different opinion. Request denied.

The patient was upset and didn’t know what to do. They phoned a friend to discuss this. The friend didn’t know what to do and phoned their favourite cousin. The cousin didn’t know what to do and phoned a doctor they knew at the hospice that would be willing to discuss assisted dying – still a taboo subject amongst many palliative care people in Aotearoa/New Zealand despite it becoming legal from November 2021.

I listened to the story and without full clinical details, I could only offer general advice for someone from outside of our catchment area. The person sounded unwell to me and might have less than six months left to live. They also sounded as if they needed more input from the local hospice service. The cousin said the hospice had sent a nice volunteer who was of the same ethnic origin to provide some company for the unwell friend. It was a nice thought but the hospice hadn’t checked a crucial detail. The volunteer’s English was limited, but they spoke the language of their ethnicity well. The friend looked similar to the volunteer in terms of ethnic features but had been born in New Zealand, only spoke English, and did not speak the ethnic language at all. Smiles and sign language could only go so far. It’s always better to ask rather than assume. Books and covers.

I suggested the cousin could encourage their friend to ask for more help from the local hospice as people in similar situations were being helped by hospices all around our country. I suggested that the patient could contact the assisted dying service to explain the outcome of the assessments made as the patient sounded as if they might fulfil the eligibility criteria. The cousin thanked me and said they would pass on my suggestions to their unwell friend. I felt it was a shame that their friend did not feel able to talk to their local hospice about their situation and assisted dying directly. I won’t make any assumptions about possible reasons.

Palace of Care – Straight Up Now Tell Me

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Things hadn’t been going so well in recent weeks. Our patient had needed to come in for treatment which helped one of their issues, but came at a great cost. Pain was made much worse for most of the day after the treatment was given. This was on top of a high background level of pain already. I suspected our patient downplayed their pain. They were well versed in putting up with significant amounts of pain. There was no questioning their toughness and strong determination.

I said to them, “anyone else would not have been able to handle what you had in the past year. Most people would’ve stopped treatments after the first two cycles, but you had more than ten cycles. I think you have stayed alive through sheer will power alone.”

We had come to the point where, “First Do No Harm,” had to be considered. The treatment we had provided had made the symptoms worse, it had increased the suffering experienced. The entire management plan needed to be reassessed, with the patient and their spouse. A meeting was scheduled for the next day.

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Palace of Care – Maturity Crash Course

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She was still a child when we admitted her to our inpatient unit. 21 years old but she acted more like a teenager. She had been unwell for five years with bone cancer and had undergone many treatments. She had spent a lot of time in hospitals and had moved from her hometown to be closer to live in the same city as the treatment centre. In her last hospital admission, she had been troubled by a racing heartbeat and had been reviewed by heart specialists.

She was nervous on arrival at the hospice, and she wanted us to discuss any changes with her Oncologist. She had been under his care since her first treatment and she wanted him involved in any treatment decisions. We were happy to involve him and discussed our proposed changes with him. He said that he would defer to us when it came to palliative care issues as he felt we had more experience. Over the next week we built up trust with our young patient, and we were able to control her pain well enough that she could go home.

After two weeks she had become unwell with worsened breathing and ended up in the hospital. They scanned her and found cancer in her lungs had worsened. She asked if she could be readmitted to hospice and a transfer was arranged for the same evening. Medications to ease her breathing was started.

She was reviewed on the ward round the following day and was started on high-dose corticosteroids which initially helped her breathing. A few days later she asked to speak to the doctors. She said that she understood that her lungs were in bad condition, and without medication, she would die. She asked if she could stop her medications. She had discussed this with her family and they wanted to support her decisions.

She chose to stop her treatments and wanted nature to take its course. We provided symptom control medications to keep her comfortable. She died a week later.

Between the first and second admissions, she had grown up a lot. A young girl had grown up into a young woman over a few weeks. A brave young woman who took control of her situation and chose to stop active treatments, opting for comfort care only. She went out on her terms and did it her way.