Tag Archives: compassion

Palace of Care – Special Request

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Photo by Efe Kurnaz on Unsplash

Things keep on changing every day.

Nod.

Do you know what is going on?

Yes, she is getting worse.

Yes, the cancer is getting to be too much for her. It’s made her fall asleep.

Yes, the other doctor told us yesterday.

Do you guys usually go to church?

Yes doctor, but she hasn’t been for a long time because she’s been so sick.

Would you like a priest to come over.?

Yes, doctor, we have arranged for our pastor to come over.

Will he come with church members?

Yes. Doctor, can we please have a bigger room?

I’ll see what we can do. I’ll have to talk to some of my colleagues. I’ll do what I can.

Okay.

The things that have been making her uncomfortable are going to get worse. Her breathing is going to change. She’s going to get more sleepy. She doesn’t have much time left, she is dying.

Yes, Doctor, can we please have a bigger room? We are a big family and there are a lot of us who want to come in. Do you think you can help us doctor, please.

I will get onto it right away. In the meantime I’m going to review all of her medications. We want her as comfortable as possible. She’s had too much pain causing suffering.

Thank you Doctor.

You all take care.

It took a bit of negotiation and flexibility but the patient and family were moved into one of our bigger rooms. This allowed three generations of the family to spend the afternoon together with our patient. She died short hours later in the presence of her family.

Palace of Care – Three Wishes

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Photo by Vladyslav Tobolenko on Unsplash

They had told him time was short. He had asked them how long they meant. He couldn’t recall them giving him a clear answer. He set himself three goals before leaving hospital. Grass underfoot, the taste of green apple and to eat an ice-block.

The ice-block would be easy, we had plenty of ice-blocks as our patients may have swallowing difficulties and icy treats can be most welcome. Plain old lemonade ice-blocks can be most refreshing.

I asked if our kitchen had green apples. No – this was not something that patients usually ate. Too hard to chew for some people and too sour for most people. The kitchen usually was stocked with canned fruit, stuff that would not perish. I asked the universe for green apples, the universe provided me with five of the best. (A quick trip to the local convenience store was made. Sorry, we just sold our last green apples to another customer. A longer trip to a local fruit and vegetable store was successful. Five bright green Granny Smith apples were chosen. 10 minutes spent travelling in a hospice EV. )

I dropped off four apples to our kitchen staff.

“Could you make an icy treat with these apples?”

“Sure, I’ll blend them with ice.”

I went off to be the teacher’s pet. Giving our patient the fifth apple I left the room as he was busy with another staff member. I walked down the corridor and the chef was holding a glass jar that contained bright green icy slush. I hadn’t expected this to be prepared so quickly. I presented our patient with the drink. As he sucked on the straw the look on his face was pure pleasure, “Ahh, that’s good.” He hadn’t been allowed to eat and drink for a long time in hospital.

Grass underfoot was going to be a bit more challenging. His mobility had worsened as he had become weaker. Stuck in bed for weeks. Stuck inside the hospital walls, breathing conditioned air. His only sunlight exposure was through a window that could not be opened. The first day he was too tired to do anything. Could he be hoisted into a wheelchair? Would we have to push his bed out into our courtyard, over to the lawn? Could he sit up in bed? Or could we bring a piece of turf into his room? Maybe a combination of all three wishes, an icy green apple and grass slushy? Maybe not. Thanks to the kind efforts of our physiotherapist (not terrorist) and our nursing staff a short trip in a wheelchair was enabled.

Out into the sunlight, a gentle breeze on his face wheeled out towards a fine collection of chlorophyll. Slippers off. Feet resting on lawny goodness. A man communing with nature. He lay back in a reclined position, his head propped up by a soft pillow. A satisfied smile in his eyes and mouth. Contented bliss. A momentary escape from hell. A relaxing dose of normality. A simple pleasure.

Missions Accomplished team!

Palace of Care – Referred Again

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When I received the second referral for our man with Chronic Pain I decided to be a bit more careful. Again he didn’t fit within our referral criteria, he didn’t have a life limiting diagnosis which is usually one of the non-negotiables for people under our care. That’s what it looked like on paper, but I will always give a person the benefit of the doubt. We only decline a small number of referrals to our service and most people will have at least one face to face assessment. I decided to see for myself as I knew him better than most people on our team. I arranged for a home visit later in the week.

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Palace of Care – Far Too Young

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Photo by Rhii Photography on Unsplash

For most of my time in medical school, I thought I was going to train to become a paediatrician. That all changed after I went to Taiwan to do my medical elective in Paediatric Oncology. After five weeks on the child cancer ward, I realised I couldn’t become a paediatrician. I found I couldn’t handle working with critically unwell and dying children. I decided to become an adults-only doctor and didn’t look after children anymore.

Fast forward 11 years and I was in the final year of my Palliative Medicine training, and I was working in the local hospice. In New Zealand, the definition of adults is those 16 years old and over. We had admitted a 16-year-old immigrant schoolgirl and she was dying of metastatic bowel cancer. It is highly unusual to have bowel cancer at such a young age. What she had was aggressive and deadly. Physically it was challenging to control her symptoms but that was the easier part of dealing with her case. Looking after such a young person made the case difficult for me and other staff members. She was the same age as some staff members’ children or grandchildren. Most of us were not used to working professionally with adolescents.

We had admitted her for end-of-life care and it looked like she had limited time left. The prospect of her dying alone made all of us feel uncomfortable. The girl needed parental support but the girl’s mother had died and her father had to go back to their home country to deal with urgent matters. She had no other family and was alone in New Zealand, apart from similarly aged school friends. How could we help her through this?

Her cries for help would be answered by a church pastor, who stepped in and became a mother figure for our young patient. This lady moved in and provided motherly support during the toughest of times. The pastor and her husband (also a pastor) arranged for the girl’s father to return to New Zealand. The pastor stayed with the girl at our hospice for the last weeks of her short life.

It was sad that our young patient was dying, but it was so nice that the pastor was there to provide maternal support. It was good to know that there were still some good people around who could be counted on. Our patient was kept comfortable and died after her father had come back from overseas. In many ways a memorable case of someone who died far too young.

I think therefore I am? – Why Can’t We All Just Get Along?

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Hospice/Palliative Care people have a reputation for being nice to patients and patients’ families. We try and treat people with respect and kindness. We try to be compassionate in our dealings with people who are extremely unwell, people who are dying and their loved ones. When time is short we want to deal with people in a calm fashion. We try to take as much stress out of their lives as possible. We work on the individual’s quality of life which is defined by them. We try our best to relieve what they think of as suffering. I’ve been working in Palliative Care for almost 16 years and I’ve often wondered why Hospice/Palliative Care teams are not always so nice to their own team members.

We don’t always treat our own team members well. Is it because we have used up all our kindness in dealing with our patients and their families? By the end of the day has the milk of human kindness been out for too long? Does it return back to base soured? Our faces may not be so cheerful. Our patience levels running on empty as we have worked on patients for hours. Why so glum chum? Have we shone our lights of external kindness so brightly that when we return back to base, the shadows we cast are that much darker?

We might not always like our patients, but we have a duty to treat them with respect. I can’t get angry with my patients so I look for other people to take it out on. Does this lead to us saving up our bad behaviour for our own people? External facing angelic beings, but the wings become whinges when we look inwards at our own people? It doesn’t have to be this way. What can we do to change Hospice/Palliative Care? Do we need to do a complete re-haul? Start all over again and involve patients and their families as co-designers. Can we encourage our team members to behave better towards each other? Can we create a more understanding, respectful and resilient workplace culture?

Palace of Care – Easter Face/Off

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Photo by Jerry Yu on Unsplash

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.