Palace of Care – Easter Face/Off

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Easter was about to arrive. At the last minute, I asked my wife and daughter if they had bunny ears I could borrow. They replied yes but they were unable to or me. Just like an Easter Egg a cunning plan was being hatched. Leftover Christmas decorations were examined and a pair of antlers were found. With the addition of cardboard, staples, and a hair tie, bunny ears had been produced out of thin air.

I wore the bunny headband for my whole workday. Anything for a laugh. The patients and their family members bore witness to my madness.

Later in the day, I met the son of one of our patients. He didn’t have clown makeup on and was of a serious demeanour. Facial tattoos adorned both cheeks. A proud member of one of New Zealand’s infamous gangs. We were both in the room because of the patient. Both of us trying to do the best for him. I tried my best not to stare at his facial tattoos. He tried his best not to stare at my bunny ears.

“Happy Easter,” were the first words I said to everyone in the room. Reading the logo tattooed on the son’s cheek I found out he was a member of team blue. I’d had a number of dealings with various members of this gang in the past. He stayed outside of the room but popped his head through the open window. I spoke to his father to see how I could help. Pain, nausea and hiccups were the main issues troubling my patient. He knew he was critically unwell and agreed with my plan to calm down his symptoms. His wife couldn’t keep a straight face as she tried not to laugh at my bunny ears. On that lighter note, I left the room.

A few minutes later our charge nurse had to go back in to talk to the patient’s son. He was smoking cigarettes on the balcony outside of our patient’s room. She asked him politely to stop smoking as it was a health and safety risk as our balcony is wooden and at risk of fire. He put out his cigarette without any comments or fuss. We have rules we have to comply with otherwise we’d be shut down.

We look after all sorts of people from all sorts of backgrounds, and all sorts of families. Even hardened criminals can be vulnerable when their loved ones are dying. They need to be treated with compassion and professional courtesy regardless of our own personal opinions. They want our best professional opinions when they meet us at work.

Palace of Care – Earning Trust

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It had taken months to earn their trust. I had to show a willingness to listen. To demonstrate flexibility in shared decision-making. Each clinic visit involved negotiations. I thought I could make them more comfortable with my medications. They did not want to try my medications. I pushed, and they pushed back. I pulled, and they pulled away. I made lots of suggestions, but most of them were shot down. The interactions were always polite, but it was difficult to engage.

I was sure the treatments were making them feel worse, but they would’ve done anything to live longer, no matter what the personal cost. 12 cycles of chemotherapy meant eight months of being imprisoned mostly at home. Unable to venture far from the toilet because of the almost constant diarrhoea. Always accompanied by crampy abdominal pain, day and night. Long days and longer, lonely nights. There was no way to rest properly apart from the few days between cycles when they’d feel almost normal again. Then it was time to start the next cycle.

They had planned a trip with their family. They wanted the children to travel with them to far-off lands. They wanted to create a memory of an exciting family trip. The journey was booked for six months. I was worried about our patient living through the next four months let alone six months. I talked about smaller trips closer to home. The children just want to spend time with their parents. It doesn’t have to be fancy. Short day trips would be just as memorable. The children missed their parent’s cooking. Their other parent didn’t cook as well despite their best efforts. The kids longed for a taste of normality.

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Palace of Care – Sold

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The patient didn’t want to let go. Their loved ones couldn’t let go either. They all knew what was happening. The patient was dying. The loved ones were crying. The clinicians listened and were guided by what the patient and their family wanted. It was difficult to let them have their way, but it was important for them to exert the only control they had on the situation.

As Palliative Care clinicians we are trained to be compassionate, to want to do something to try to ease another’s suffering. It’s terrible knowing you can make someone more comfortable but you are not allowed to act. It can make you feel powerless and useless. Possibly what the patient and their family have felt throughout their illness experience.

I arrived in the morning and I looked at the little table in our waiting area. I was hoping there would be a candle lit, indicating the death of a patient. There was no candle. The nurses reported that our patient had a rough night. No sleep with lots of distress, the family also distressed and sleepless.

On examination, I saw distress, confusion, discomfort and terror writ large in the patient’s eyes. They seemed to stare through us, into another plane of existence. Concern was etched into the tear-lined faces of the gathered family. They asked to speak to our team in a few minutes time. Their night shift needed to check in with their morning shift.

“I’m sorry but we just wanted to spend as much time as possible with them.”

“There’s no need to apologise, we understand, and you don’t need to explain. You were trying to do your best to hold on to each other. I’m sorry things keep on changing.”

“Please do what you need to. Too much suffering. We can’t bear it.”

“Do you trust us?”

“Yes, please make them comfortable.”

“We’ll start some medications to calm things down, to decrease the distress. We’ll come back in four hours time to check for effect. If it hasn’t worked we will adjust the doses. They’re likely to become sleepy because they are exhausted and haven’t slept for days. They might not be able to wake up again.”

“How much time is left?”

“It might be days at the most, but it is likely much, much shorter. They’re too unwell and could die at anytime. We’re going to get you all through this.”

My team prescribed the medications and I took them for a quick break.

Later in the day, everyone sighed in relief after the last breath was taken.

One of the toughest cases in my fifteen years of full-time Palliative Care.

I think therefore I am? – A Sense of Urgency

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The one thing I want my students to learn about palliative care patients is they need to be treated with a sense of urgency. Life-limiting illness is time-limiting illness. Therefore patients’ time must be treated with respect, as it is precious and beyond price.

If someone only has six weeks left to live and you make them spend six hours waiting in a clinical setting, you are robbing them of valuable time. Time they could spend doing important things. Having important conversations, meeting people possibly for the last chance to say goodbye. Bringing closure to long-term relationships. Time spent with friends and family. Time they could choose to do, whatever they want to.

Please do not waste their time, as they can never have it back again. No matter how much money someone has they can never buy back time. Please treat dying people’s time with respect. It is their time, not your time. Please treat palliative care patients with a sense of urgency. Time is running out for them.

Palace of Care – A Painful Day

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Two stripes on the RAT test confirmed my suspicions, after a night of fevers and body aches. COVID positive. Painful muscles and joints, headache and some hyperalgesia.

I make it a habit to expose myself to some suffering daily with 30 seconds of a cold shower each morning to wake me up. Twice a week I go and train Brazilian Jiu Jitsu. Through this sport, I have learnt to keep calm in uncomfortable situations. Fighting against painful joint locks and against choking attempts has built my resilience.

Today I feel that I have overdosed on pain, which has persisted despite my taking Paracetamol and Ibuprofen. Putting up with pain is exhausting which I had some inkling of from the many patients I have cared for. A doctor needs to have some suffering experience to understand what their patients are going through, but today’s lesson has been a bit too long and unending.

I am hoping for a better tomorrow.

Palace of Care – A Self-Sufficient Family

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One of the cruellest consequences of COVID lockdowns was the restriction that we had to place on visitor numbers. We were generous in that we would allow each of our patients up to four named visitors, but this still fell short when it came to families with more than four members. We acted with humanity and compassion, thinking to ourselves how would we feel if it was us in their situation? But what do you do when someone has 15 children? It is difficult for a family to choose who gets to come in, and who has to stay out. Video chat technology allowed for virtual visits but they were no replacement for in-person visits.

Our patient was a man in his 50s who had six children, the two eldest lived out of town. The four younger children were keen to spend time with their Dad, and their Mum struggled to choose who would be the nominated ones for any given day. The family had always been close and the parents had home-schooled their children. They had always done things in their way. Having Dad critically unwell and away from home added to the overall disruption of their family life. Our team’s opinion was that our patient only had limited time left to live. Given the circumstances, we flexed our approach and allowed the four younger children to visit alongside their mother.

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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.

Guest Post – Naomi’s Notes – Offering

It was a week before Christmas, a special birthday celebration and instead of just a few candles we offered 1000 butterlamps.  These were lit before the start of the ceremony which concluded with the traditional Happy Birthday song for Rinpoche.  

After our shared lunch I walked slowly up the stairs to the Temple.  From the bottom of the stairs in the distance I saw a young woman  with her two children aged 6 and 8. I greeted her on arrival and she asked if she could light some butter  lamps.  She looked close to tears, and I asked her, “What’s the matter?”

“I need some help, my son died last week and I need some kind of spiritual help that’s why I came here. Is there a Lama here? I need to talk to someone.” Then the floodgate of tears was unleashed.  I put my arm around her and let her cry. Her two young children looked worried. I had some home baking upstairs and asked them to bring it down for a cup of tea. 

When we were alone she shared  that her 23 year old son had committed suicide.  His siblings were told their brother had died.  They were too young to understand and she didn’t want to burden them with it. As the children came bounding down the stairs I offered them something to eat and suggested they play outside on the grass where they could still see us whilst I talked with mum.   They appeared to be relieved to have  another adult to talk to their mum. 

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I think therefore I am? – SEP

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Ford Prefect says, “An SEP is something we can’t see, or don’t see, or our brain doesn’t let us see, because we think that it’s somebody else’s problem. That’s what SEP means. Somebody Else’s Problem. The brain just edits it out, it’s like a blind spot.”

The Somebody Else’s Problem field… relies on people’s natural predisposition not to see anything they don’t want to, weren’t expecting, or can’t explain.

From Douglas Adams’ Life, The Universe and Everything 1982

The SEP field generator is an incredible thing, where-ever you shine the beam, like an amazing piece of magic, suddenly the problem disappears and becomes someone else’s problem.

Sound familiar when you think of palliative care patients and their problems?

Other specialities do this to us all of the time, they leave work unfinished or not even attempted. They somehow know that us good-natured folks will make sure that things are sorted.

This isn’t really fair to us, but especially unfair to the patient. Where is the patient in all of this? Certainly not in the centre of attention.

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Guest Post – Naomi’s Notes – Cushion

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They met at a seven-year meditation/philosophy course, which required participants to travel to India each year for the 1st week in April for instruction. It was taught by  H E Tai Situ Rinpoche one of the great Meditation Masters.

The seating was cushioning on the floor, he sat in front of her.  He was from Germany with limited English and she was from New Zealand (NZ) with limited German but they were able to communicate.   They formed a group with the Spanish man that sat next to him and the Taiwanese woman that sat next to her.  The group exchanged email addresses and from time to time corresponded. When in India they would all have breakfast together.

After year three of the course, he wrote to say he had to drop out of the course as his 88-year-old mother was sick and he needed to care for her.  He wrote about his newly acquired knowledge in gynaecology, breast cancer, podiatry, and dentistry gained from having accompanied his mother to all of her appointments.

She wrote back and gave him some moral support.   She also sent a gift from the NZ sheep, woollen socks for both his mother and him. 

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