Palace of Care – Something in Common

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I was introducing myself to a new patient.

He asked, “Can you speak Mandarin.”

I replied, “Yes, I can.”

“Where are you from?”

“I was born here.”

“What people do you belong to?”

“Hakka.”

“Really? Me too.”

“My family are originally from Guandong Province, Meixian County.”

“Mine too.”

“Wow, we could be cousins. How are you feeling?”

“Not good, I’m short of breath, can’t relax. Pain in my throat, and I’m having trouble swallowing. I keep on choking, even on water.”

“You must be exhausted.”

“Yes, I just want to sleep. I know what is going on, I don’t have much time left. This cancer has been really bad.”

“Yes, it has made you really unwell, I can see your arms are swollen.”

“Yes, that just happened yesterday, everything got worse in the past week, it’s too fast.”

“I’ve prepared my funeral plans, I’m ready to go, I know what is ahead of me.“

“We’re going to get you through this, and we’ll look after your family as well.”

“Do you or your son have any questions?”

“No, not at the moment.”

“You just let me know if you want to talk about anything, or if your family have anything they want to know.”

“Okay, thanks doctor.”

“I’ll adjust your medications now.”

“Thank you, I’ll see you later.”

Our families had originated from the same county and province of China and had then moved to different parts of the world as part of the Chinese Diaspora. Many years later we both met each other in the hospice inpatient unit. Having something in common really helped me to establish rapport.

I think therefore I am? – Different Jurisdictions

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The Land of Milk and Honey

“NSW  residents will have access to the highest quality care and pain management services at the end of their life, with palliative care and specialist health services to receive a record $743 million funding boost over the next five years.
Premier Dominic Perrottet said the 2022-23 funding boost is on top of the $300 million the NSW Government invests each year in palliative care.”

Quoted from this NSW government press release.

Meanwhile in Aotearoa New Zealand

In Aotearoa New Zealand we have to use milk and honey to make fundraising bake sale items. It is ridiculous that health care institutions have to count on sales of Chocolate Brownies and other baked goods in order to maintain free services to eligible patients in the community they serve. Literally having to sell baked goods in order to try to save staff jobs. We really do need a hand here, as we don’t want good patient care to have to depend on our baking supplies.

“Sorry Mrs Smith I can’t admit you because we have run out of flour. I would like to see you in the outpatient clinic Mr Kim but we can’t find any cocoa.”

Where is the kindness for some of the most vulnerable in our population? Palliative Care is not just about end-of-life care, but the care that is required in the time leading up to death, which might be 6 to 12 months or even longer. It is not just physical care that is required but psychosocial/spiritual/cultural care as well. The dying members of Aotearoa’s population deserve to be treated better.

“Sorry Mrs Ihaka, you can’t come become a hospice patient because we ran out of vanilla essence.”

What if hospices had to reduce services or shut down?

Who would care for all of the patients and families that we help?

Would the already over-stretched hospital sector be able to cope?

What if hospices were allowed to disappear?

Be worried.

It could happen.

Palace of Care – Four Weddings and a Funeral

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He was far from home, many kilometres away from his tribal lands. He had come to the big city for cancer treatments and to be closer to the few family members who lived close to our catchment area. The treatments had not worked despite everyone’s best efforts. His condition deteriorated at an increasing pace. The Oncologists thought he was dying, that he only had days left to live and they arranged for him to be transferred to the hospice for symptom control and likely end-of-life care.

We managed to calm down his physical pain and nausea with urgency. When he was more comfortable his appetite improved. Everything was going well, we started making arrangements for where he would go next. Along with his family, he had chosen a hospital-level care facility that would be easy for his out-of-town family to visit.

On the day of his planned transfer, without warning, he collapsed and died. Death inside a hospice is not an unusual event. For Maori folk, after death, the usual preference is for the body to be embalmed and then for it to lie in state at a family home for a few days. Then it will make its final journey to the mana whenua/tribal homeland for burial.

Our patient and his family were all from out of town. They did not have a place of their own they could use to host a small funeral. They asked if it would be okay for his embalmed body to return to hospice for them to hold a tangihana/funeral.

We discussed it as a team and said “Sure, let us know if we can help.”

His family were grateful to be able to farewell him together in their traditional way.

In all my years of working in hospice, there have been more than four weddings on-site, but this was the first funeral.

I think therefore I am? – Good Finding

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We human beings have a natural tendency to look for the bad in any situation we encounter. This is a protective mechanism as we need to be able to deal with any threats we may come across. In times past this might have been crucial in keeping us alive but the level of threat that we encounter in modern day life is much less than what our ancestors experienced long ago. Can we change our outlook on life and could this be of benefit to other people?

I came across the concept of good finding as an exercise I completed when I was part of Akimbo’s altMBA last year. Each day look out for good things that people in your life are doing and let them know that you have noticed them. Be on the lookout as you will need to find at least three things a day that viewers can choose from. Do it for the next 30 days to establish the habit and then see what happens to the world around you and your view of it.

How does it make you feel?
How does it make the recipient feel?
What other changes do you notice?

Give it a go, who knows, things may never be the same again.

I think therefore I am? – What Did You Do?

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Any medical history is incomplete if the social history is not assessed. An important part of the social history is occupational history. What line of work a person did can tell you a lot about them. What jobs they held and for how long can provide a clearer image of who the person is. It can indicate what level of education they have had. Also, it can provide clues as to how they have done financially. Where did they work, locally or overseas? How important was their job for them? What level of loss has occurred as they are no longer able to work? Is there any unfinished business? Is there anything that needs to be sorted out in relation to work? What has been important to them up until now? Was there a work-life balance or otherwise?

The above information gives you a better idea of the human being that is in front of you and their place in society and the world. What is the best way to communicate with them, and how can you discuss things in terms that they will be able to follow? Talking to an engineer is different to talking to a chef. Talking to someone who has devoted many years to home-schooling their children is different to the conversation you’d have with a truck driver. The conversations are aimed at finding clues about who the person actually is. What analogies would help improve understanding? What kind of language to use or what level of detail to share? What is important to them at this stage of their life? What do they still have to sort out? How can you best build rapport?

How can we connect with them? What do we need to know about them in order to take better care of them? What did they spend a big chunk of their adult life doing? Also what hobbies do they have and how passionate have they been in pursuing those activities. One human trying to get to know another human, trying to connect with them to help them out. Striving to make a connection.

Any medical history is incomplete if the social history is not assessed. An important part of the social history is occupational history. What line of work a person did can tell you a lot about them. What jobs they held and for how long can provide a clearer image of who the person is. It can indicate what level of education they have had. Also it can provide clues as to how they have done financially. Where did they work, locally or overseas? How important was their job for them. What level of loss has occurred as they are no longer able to work? Is there any unfinished business? Is there anything that needs to be sorted out in relation to work? What has been important to them up until now. Was there work-life balance or otherwise?

The above information gives you a better idea of the human being that is in front of you and their place in society and the world. What is the best way to communicate with them, how can you discuss things in terms that they will be able to follow. Talking to an engineer is different to talking to a chef. Talking to someone who has devoted many years to home-schooling their children is different to the conversation you’d have with a truck driver. The conversations are aimed at finding clues of who the person actually is. What analogies would help improve understanding. What kind of language or what level of detail to share? What is important to them at this stage of their life? What do they still have to sort out? How can you best build rapport?

How can we connect with them? What do we need to know about them in order to take better care of them? What did they spend a big chunk of their adult life doing? Also what hobbies do they have and how passionate have they been in pursuing those activities. One human trying to get to know another human, trying to connect with them to help them out. Striving to make a connection.

Palace of Care – Calm Personified

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My patient arrived in 1970s New Zealand (NZ) a refugee. One of the millions of innocent victims of a proxy war. She and her husband had worked hard, and raised their family well. Their children had grown up and had made good lives for themselves and their own families. She was the proud grandmother of six, with ages ranging between 2 to 18 years old. She was admitted for end of life care and had been comfortable. Her family attributed this to her Buddhist beliefs. She had always been the calm one in their family. “Dad was the fiery one, and he had died about seven years ago.” She had carried on with life, taking even the death of her partner with calm. She her family that she would see him in the next life. She wasn’t sure in what form he would be reincarnated, but she was sure they would meet him again.

She had lived a calm life and her family were not surprised that her dying process was also calm. She didn’t need much in the way of medications as she was mostly comfortable. She lost consciousness and we warned the family that death was likely imminent, that she would be dying soon. Two weeks passed and she was still alive. She remained comatose and non-responsive. She had not been alert enough to have any oral intake. The family made sure her mouth was kept moist.

Her family asked us how long she had left to live. We explained that from our experience that other patients in similar situation likely would have died two weeks ago. Our science could not explain why she was still alive. We asked if she had any unfinished business, was there anyone that she had not seen yet? The family gave us a puzzled look, she had seen everyone that she needed to see. Or so they thought. As clinicians we all wondered, what she was waiting for?

We found our answer a few days later. As I was heading upstairs for lunch, three men walked into the hospice. One of them walked ahead, followed by two others. The two men wore green uniforms and looked as if they could handle themselves. The man in front was a short, Asian man in his forties. His hands were cuffed together. He was led to his mother’s room and spent some time saying goodbye to her. He cried as he had not seen her for two years he had served in prison.

She may have been comatose and thought to be insensate, but she knew her son had come to say goodbye.

She died two hours after her son’s visit.

Palace of Care – A Father’s Grief

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I went to see the new patient who had just arrived by ambulance. A Chinese man in his 30s who was drowsy and confused. He wasn’t able to move out of bed, and needed full assistance with all cares. He was accompanied by his wife and his father. Our patient’s English was reported as good but he wasn’t alert enough to answer many questions.

“Where are you sore?”

Hands pointed to his abdomen as he grimaced.

His father said, “He’s always considered other people before himself. That’s how he’s been since he was a young boy.”

I made some adjustments to the patient’s medication to try to ease the suffering.

His father came to speak to me, and I ushered him into a small meeting room.

He was angry and devastated. He spoke to me in Cantonese which I have some understanding of, thanks to a childhood of watching Hong Kong TV series on VHS video tapes. My usual slow process with Cantonese, is to convert it into Mandarin and then into English. I have trouble when trying to go back the other way, so don’t speak Cantonese.

He recounted the clinic appointment they had attended yesterday. They had driven from home to the Oncology Centre. His son required a wheelchair as he could not walk the long distances. The Oncology registrar that met them was Chinese and spoke Cantonese. He asked if his son could lie on the bed as he was tired from sitting up for hours to get to clinic. The registrar answered no, that the clinic was too busy today. This surprised the father who said, “Couldn’t they see how unwell he was? Then they told us bluntly, there was nothing they could do for my son. That he was dying. I was so angry that I wanted to complain, but my son wouldn’t let me, he told me to leave it, and that he wanted to go home.” I listened to him for 45 minutes and talked to him in Mandarin which was our shared second language. He had calmed down and was able to head back into his son’s room.

Continue reading

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 – Bedside Lessons digitally published today

Hi folks,

I’ve been a bit quiet on Palliverse in recent weeks as I have been finishing off my book which I started in October last year. Some of the previous versions of some chapters had been published on Palliverse in the past.

Available on Kindle now, Print version to follow soon.

The Introduction and the first nine chapters can be read via Amazon’s Look Inside button on the above web-page.

Special reduced introductory pricing for the first 100 purchasers, please leave a review if you like it.

Palace of Care – Calling The Shots

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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.”