Category Archives: #FOAMPal

Palace of Care – Calm Personified

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Photo by Jared Rice on Unsplash

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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Photo by charlesdeluvio on Unsplash

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.

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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 – Bedside Lessons digitally published today

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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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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.

I think therefore I am? – The journey begins

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The largest health and disability system reforms for a generation will start in Aotearoa New Zealand (ANZ) starting in July of this year. One of the major changes is the creation of an independent Māori Health Authority. Its important task is to address the health inequities and disparities which lead to Māori people dying seven years earlier than other residents of ANZ. It has taken us 182 years to reach this sorrowful state and a real change of mindset is required if anything is to change at all. It can feel almost too big. What can I do to make things better? What difference can I make as an individual when the system has been designed to continue producing the same results? Nothing changes if nothing changes.

During a visit to one of the local marae/meeting place years ago my hospice staff were asked, “What do you have at your hospice that would make Māori feel welcome?” We struggled to answer the question. “Well here is your wero/challenge. How can you make us feel more welcome? Show us some evidence, don’t just talk.”

Thus began our journey of discovery, we needed to be educated. Bi-cultural competency training was arranged for all staff members throughout all levels of our organisation. For both clinical and non-clinical staff. We learnt about the adverse effects of colonisation, and the poison of institutional racism. We are encouraging each other to use more Te Reo Māori words in day to day hospice life. Bilingual signage has been placed as we seek a more open cultural direction.

We are singing Māori waiata/songs together every Wednesday morning. Today we were graced by a special impromptu guest. One of our tangata whenua/Māori inpatients walked into the room where we were singing. She had a big smile on her face as she joined her voice with ours. It was a privilege to be able to sing alongside her for those few minutes.

We have only just begun our journey of discovery but it is making a difference already. Another tangata whenua patient we cared for recently told me, “I started laughing as soon as I walked in. The wairua/spirit of your place felt good. I feel comfortable here. I trust you guys.”

It’s a small step in the right direction. Are you going to join us on the hīkoi/walk?

Guest Post – Naomi’s Notes – Waiting for an Invitation

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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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Two online PEPA workshops for General Practitioners – 23 July 2022

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PEPA have two workshops to advertise in your regions. Eventbrite is open for registrations.

Name of workshop: Palliative Care in General Practice

Day and date of workshop: Saturday 23rd July, 10.00am – 12.00pm

Venue: Online

Register at this link: click here

This workshop is for General Practitioners based in Victoria (Australia) who care for people with a life-limiting illness. Practice Nurses are also welcome to attend.

Topics

• Recognising patients who need palliative care

• Communicating about end of life issues

• Voluntary assisted dying in Victoria

• Assessing and managing common symptoms

• Advance care planning

Facilitators:

Dr Rowan Hearn – Clinical Director Palliative Medicine, Calvary Health Care Bethlehem

Dr Rupert Strasser is a palliative care specialist and geriatrician, with Calvary Health Care Bethlehem. He is passionate about providing excellent clinical care for all. Rupert’s clinical interest includes palliative care for neurodegenerative disease.

PEPA is an accredited educator with RACGP (workshops are eligible for category 2 CPD points)

Date: Saturday 23rd July 2022

Time: 10am – 12pm

Online – a WebEx link and guidelines to access will be provided prior to the workshop date.

Workshop Pre-requisite:

To maximise learning PEPA offers 6 online GP learning modules. These modules have been developed by palliative care experts and reviewed by clinicians with extensive palliative care experience. They can be accessed by setting up an account at the PEPA Palliative Care Education and Training Collaborative: https://palliativecareeducation.com.au/

PEPA is an accredited educator with RACGP. Workshops are eligible for Category 2 CPD points

Inquiries:

PEPA Administration – E: pepa@svha.org.au

Margarita Makoutonina, Calvary Health Care Bethlehem

M: 0425 774 195

E: Margarita.Makoutonina@calvarycare.org.au

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