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?

Continue reading

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.

Sneak Preview from Bedside Lessons – Chapter 65 – Please Take A Seat

Photo by Stephen Audu on Unsplash

Family meetings are common in healthcare settings and are organised to convey a point of view or to try to bring together disparate points of view. These events may be the first chance that some of the key stakeholders, i.e. the family and the healthcare team, have to meet each other. First impressions, as within any first meeting, are important. As you can only meet for the first time once, you’d better do your best to make sure it goes well. To establish a trusting therapeutic relationship between the patient, their family and the healthcare team, rapport must be established quickly. Every encounter can count, but not everything can be planned for.
“Come in, please take a seat.” Oops not enough seats, I didn’t think there would be so many people joining us. “I’ll get some more chairs.”

“No doctor, it’s okay, we’re Islanders, we’re used to sitting on the floor.” He sat down on the floor in a cross-legged position and the rest of his family followed.
While dropping to the floor and re-arranging my legs into a well-versed pose, “I’m an Islander too, and I’m used to sitting on the floor too.” I was joined by my cross-legged team member. Eyes were in contact and were levelled, as were some of the power differentials. Serious issues were discussed in a different but more trusting fashion.

Continue reading

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

Photo by Felicia Buitenwerf on Unsplash

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.

I think therefore I am? – The journey begins

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?