Palace of Care – Yella Fella

I’ve never had my fingernails painted before. Today was full of new experiences. I didn’t plan the beauty session well. While my fingernails were drying, I took off my shoes and socks. I then painted my toenails. Two coats were applied as I tried my best to colour within the lines. I hadn’t brought any open-toed footwear and I didn’t want to walk around barefoot in our inpatient unit. I thought up an inelegant solution involving the desk chair on wheels I was seated on. If I planted my feet on the lower supports and then if I shifted my body forward I could slowly propel myself at a top speed of 1 cm per second. This could make for a long morning ward round.

My colleague took matters into his own hands and wheeled me down the corridor to see our patients. I wore my yellow scrubs with a yellow mask. My finger and toenails were painted yellow. If I was a soft drink I would be called Mello Yello. If I was a dog I would respond to Ol’ Yeller. My colleagues had joined in the fun and had painted their fingernails mostly yellow as well. Another colleague had worn yellow shoes. All of us travelling down the corridor briskly reminded me of the Yellow River. Our patient who had barely been conscious the other day expressed concern as to what our spouses would think of our coloured nails.

We toured the ward in a formation reminiscent of a ribbon around an old oak tree. As we reached the end of our jaundiced journey we knocked on the door of our inspirational patient’s room. Her family members were impressed by the shiny brightness of our polished nails. Smiles and laughter made their way through the room. Smartphone cameras clicked and the noise did not disturb the sleep of our patient at all. She was fast asleep and we were not able to wake her. The family took photos to show her later.

I was called back in later in the morning once our patient had woken up. As my toenails had finally dried I walked over myself. I showed off my yellow banana socks as I took them off to reveal my matching toe and fingernails to my patient. She smiled and laughed. Mission Accomplished.

She received some visitors from her workplace later in the day. I was told that her male colleagues had also painted their nails in solidarity with our patient and were going back to the office to solidify the support campaign.

Better stock up on the yellow nail polish, as there is about to be a worldwide shortage.

Palace of Care – Yellow Fever

Photo by Vanessa Bucceri on Unsplash

She had told her family about my promise to paint my fingernails to match hers. She had painted her nails to match my bright yellow scrubs. When I examined her fingers the nails were of many different colours. Some were yellow, others were black, pink, and red, all of them nicely painted. She showed her nails and she made us all laugh. This included both staff and her own family. I joked about needing help with nail-painting supplies, as I didn’t usually paint my nails. If I was going to do so then I might as well do my toenails. I shared with our audience that my yellow nails would go down well at the Brazilian Jiu-Jitsu club I belong to. We all shared some more laughs before we came to the serious part of the family meeting.

I provided a recap of what had happened since our patient was admitted. She arrived with terrible pain, nausea and constipation. These symptoms were controlled with adjustments in medication doses over the first week. Well-controlled pain came at a cost. Our patient became confused at times. We had to make dose changes but we wanted to persevere and bring down the pain levels as much as possible.

Overall the pain and nausea improved but the confusion episodes worsened. We tried to prevent further episodes to no avail. I talked about the ongoing changes in her situation. Old problems became worse while new problems developed. We were trying to play catch up with a disease process that wouldn’t stay still. She had been having ups and downs due to medication effects but mostly due to worsening cancer.

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Palace of Care – Requested Letter

Photo by Álvaro Serrano on Unsplash

This was a first for me in my 23 year medical career. My patient’s family requested we write a letter to be read out at the funeral.

To our dear patient and their lovely family,

Thank you for allowing us the privilege of looking after you.

We know to start with you were scared of hospice and were not keen to be under our care.

You changed your mind once you met us. Our whole team enjoyed getting to know you and your caring family.

We are glad we could help you feel more comfortable, as we could see you had suffered a lot, as had your family who witnessed your suffering.

Your family had looked after you so well at home and that’s why you were able to make it to your 80th birthday. It was a testament to the loving care they provided to you.

Thank you for allowing us to look after you in your final days.

You were so unwell but we were so glad to share smiles and laughter with you and your family during your time in our inpatient unit.

Your friends and family will miss talking with you and hearing you sing, but everyone is glad you do not have to suffer any longer.

It was our pleasure to look after you and your family. That’s why hospice is here, to look after people just like you and me in the community.

We wish you and your family a fond farewell.

Kind regards,

Dr James Jap on behalf of the Hospice Team

Palace of Care – A Typical Day at Work

Photo by Chang Duong on Unsplash

I started the day leading our Waiata Group. We gather together to sing songs once a week. My shy introverted younger self would never have imagined doing this as an adult. Public speaking is one thing, but Public Singing is a whole other level of stage fright. Feel the fear and do it anyway. You’re probably wondering why a Chinese guy was leading everyone in singing songs in Te Reo Māori I did it because someone has to and I think it is an important thing to do. We had various members of our teams, from clinical and non-clinical departments, joining in song. None of us was actually of Māori descent. Today we were joined by three special tangata whenua guests. One of our Māori patients and their whānau joined us singing:

Purea Nei

Tutira Mai Nga Iwi

Whaakaria Mai

Te Hokinga Mai

We were not pitch perfect and our Spotify playlist still needs some work. That was not the point though, we were there to learn and to culturally connect. The smiles in the room spilled out into our main corridor, and people passing through were disappointed to have arrived at the end of our 15 minutes of fun and fame.

Photo by Steven Libralon on Unsplash

A few minutes later I noticed a Superman shield tattoo on another patient’s hand. We ended up talking about Superman and his greatest weakness Kryptonite. The supervillain we were trying to defeat was Mamahi-Man who had caused severe pain over too many long weeks. I hoped that my medications would lead to Mamahi-Man’s downfall. I also asked about the stories behind the other tattoos on his knuckles. He said they had been chosen by each of his children, and each one represented other superheroes. Mamahi-Man doesn’t stand a chance when we have the whole Justice League/Marvel Cinematic Universe and many others on our side.

Guest Post – PRR – WHO’S FREE?

People are always talking about being free and independent – kids want their own car and house so they are independent and free from their parents, people want their country to be independent and free from unwanted rulers. But nobody is free and independent.

Who really has control over themselves? We don’t have control over anything, not just external things, but even our own mind. We can’t control what feelings and thoughts we have from one moment to the next. And when these thoughts and feelings come, we are completely carried away by them and our life becomes like a roller coaster.

Modern technology makes everything faster, which in one way is good as we have access to more things, but in another way, the roller coaster of our emotions becomes much faster. For example, previously people exchanged letters by mail which took days or weeks, but now people exchange emails and text messages almost instantly.

We have no control and are totally dependent on conditions. For example, being in a relationship, if you talk to him or her every night and then one night you call and there is no answer, then you start to have all sorts of thoughts and emotions.

But if you have mindfulness and awareness of how you are dependent on causes and conditions then no matter what happens you won’t get completely lost or carried away.

PRR

Palace of Care – Sat Sri Akal

Photo by Sandy Millar on Unsplash

I prepared to see our patient and their spouse. They had been doing well until the past week. Then the weakness and fatigue worsened. They didn’t have the strength to leave the bed. Their spouse looked after them well. Their children were parents too. They were proud of their grandchildren. A close family but COVID-enforced separation had meant they had only seen one of their children once in two years. The same two years that cancer had taken over.

The spouse was worried about sedation from medications. The patient was reported to be in a lot of pain and could use more medication. Breathing was laboured. The patient had not spoken clearly in the 48 hours preceding the admission. As soon as I entered the room I noted the distress on the patient’s face, mirrored by the look of concern worn by their spouse. I needed to establish rapport quickly, as the suffering needed to be attended to urgently. I recognised the traditional turban and greeted them with, “Sat Sri Akal.” A look of surprised appreciation crossed over the spouse’s face. The patient stared blankly at the ceiling in a confused manner.

“They’ve been uncomfortable overnight with pain. I need to do something about it. I’m worried that it isn’t safe to swallow anymore. This is what happens at the end of life when someone is dying.”

“Can I feed them, they haven’t eaten since yesterday.”

“When someone is very unwell they can’t handle the food. They can’t swallow safely and it might end up in the lungs. It might cause vomiting or diarrhoea. I don’t want to make the situation worse or increase the suffering. We need to give medications by injections, under the skin.”

“Subcutaneous?”

“Yes, that’s right. It will be the safest way to give medications, to make sure they go where they are needed.”

“Okay, how much time do we have left?”

“I’m sorry, your spouse is so unwell, they might only have hours to days left to live. They could die at any time. I’m sorry.”

“No, no need to be sorry. It is part of life, it is something that we have to face at some stage.”

“We will do our best to make them comfortable, no matter how much time is left, we will keep on trying. We want to calm down the pain, calm down the breathing, calm down nausea and distress”

“Thank you, doctor.”

“How long have you been together?”

“44 years.”

“I’m going to change the medications now. Please let us know if you or your spouse need anything. Take care.”

Palace of Care – Hospice Garden Centre

Photo by Tim Cooper on Unsplash

“Doctor, I’ve got a fundraising idea for the hospice.”

“Aha?”

“I’ve been going for walks around the garden and there are a lot of nice plants. Some of them you can’t find in garden centres. Has the hospice ever thought about selling plants?”

“No, we haven’t.”

“Here’s a photo of some plants I noticed. They have self-propagated themselves and are growing well. Do you think I could make a donation in exchange for two of the plants?”

“I’ll check with the gardening team, but I think that will be fine if there are a lot of the plants. What are you thinking of doing with the plants?”

“I’d like to plant them in my garden. You’ve all looked after me so well during my admission. I’d like to maintain some connection to hospice even after I am gone. So later on when my children see the plants in our garden they will remember my time in hospice as a good time.”

“That sounds nice. I’ll get our team onto it and we’ll make it happen. Don’t worry about the donation.”

“No Doctor, I must insist. I know my donation will benefit other patients.”

“Okay, Deal made.”

I think therefore I am? – Dis/Connect

Photo by John Barkiple on Unsplash

One of the impacts of COVID I have noticed in the past two years is the increase in late diagnoses and subsequent late referrals to palliative care. Access to medical care shifted towards virtual means around the world and people may have put off visits to the doctor as for a while it was not easy to be seen in person.

There have been many late and in some cases too late referrals to palliative care. This creates a scramble situation as our services try to respond to the urgent need. Often in the last two years, we have received patients transferred for end-of-life care who may only have been diagnosed mere weeks before death.

We do the best we can to help them but it can feel rushed. A connection needs to be made to help the patient and their family. Rapport needs to be built and in an ideal world, we would like to have more time to build a therapeutic relationship before the patient becomes too unwell to engage with us fully. We don’t always have this luxury and have to make the connection faster. This is not a smooth process, the stakes are higher, emotions are rawer, and stress levels increased.

A short therapeutic relationship also means disconnection needs to occur in a faster manner as well. We are involved in some cases only for short days or hours in some cases. The ability to connect and disconnect without losing your humanity is an art to be developed. Strong boundary perception is important otherwise we couldn’t continue doing this job day in and day out. A delicate balance is required between connection and disconnection. Attachment and detachment. Involvement but not enmeshment. Empathy and compassion without entanglement. Human commonality and professionalism. We try our best to do enough.

Sneak Preview from Bedside Lessons – Chapter 54 – Always in Between

Photo by Tien Vu Ngoc on Unsplash

I have lived in-between for most of my life. I grew up between two cultures; the Chinese at home and the Eurocentric outside of my home. Later in University, I was part of the local Chinese Group but felt more comfortable as part of the newer Asian immigrant group.
I have a lot of experience in bridging between two different cultures which are different in many ways and may think they have little in common. Palliative Care lies in between the usual medical culture of active treatment and the culture of death and dying. Was that what attracted me to Palliative Care? Are we there to bridge the gap between cultures?

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Palace of Care – Upgrade to a Combo Deal

Photo by Masaaki Komori on Unsplash

Almost a year ago I visited a local Rongoā Clinic as I was interested in learning more about traditional Māori medicine which is comprised of diverse practices with an emphasis on the spiritual dimension of health. Rongoā includes herbal remedies, physical therapies such as massage and manipulation, and spiritual healing.

During my visit, I met a Rongoā clinic patient who had recently become one of my hospice patients. She was well at the time but over the course of the past 11 months her condition worsened. Pain developed and initially had been controlled by the herbal remedies applied. In recent months the pain had become intolerable and she had become bed-bound. Too sore to leave her bed let alone leave the house. Everyone involved in her care were worried and wanted to ease her suffering. She initially refused to take the strong pain relief agents that we had suggested, and preferred to continue with only her Rongoā treatments.

I asked for a joint assessment to be arranged with myself and the Rongoā practitioner both seeing the patient at the same time. I went to the clinic this morning and was joined by the nurse assigned to our shared patient. We were ready to show our patient that we were happy to work together in a fusion of traditional Māori medicine and modern Palliative Medicine. We were hoping that together we could convince our patient to have both traditional treatments and strong pain relief agents. We wanted her to have the best of both worlds of care.

That was the plan, but someone had already beaten us to it. The patient had recently been seen by her new general practitioner and he had already convinced her to take pain relief along with her traditional treatments. The combination worked and at the clinic this morning a smiling patient greeted us. Her beaming smile told us exactly how she felt. Her husband was happy that his wife had improved with the combination of treatments. She felt better and was now able to check up on his housework, to make sure that he was meeting her high standards. She was back, after having felt trapped in a dark place. Both of our organisations made plans to follow her up in the near future, and we pledged to each other that we would like to work together more in the future. In the meantime, the formerly bed-bound patient was being taken into town to have lunch with her husband.