Category Archives: Clinical

I think therefore I am? – If You Had A Choice

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Photo by Vladislav Babienko on Unsplash

At a palliative care conference years ago the audience was asked to choose between two options. Would you rather die instantly without warning or would you rather know about it and die more gradually? We were instructed to think through both options for a few minutes before a show of hands was counted for each option.

Dying instantly, for example from a cardiac arrest, would mean less suffering for the dying person. It’s possible it wouldn’t be so bad for the person going through it. No fear of what was about to happen to them would be generated as they would be taken by surprise.

Ignorance may well be blissful but would have drawbacks as well. Total loss of control, and inability to finish important business. You’d be robbed of the chance to say goodbye to those important to you. You wouldn’t be able to leave your intended legacy. Death is associated with loss and sudden death is associated with its own set of losses. Those left behind would also lose the opportunity to say goodbye to you, to obtain at least some sense of closure. Survivor’s guilt, “If I had known he was about to die I would never have left them alone at home.” There may be more suffering for your loved ones, so many things they will never be able to say to you again.

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I think therefore I am? – Starts with P and ends with O

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Photo by Ray Harrington on Unsplash

It’s important to celebrate the small victories we achieve in palliative care, as they are often hard-won. When the natural history of illness is one of disappointment and loss, it is important to mark the times of success. Our patient had not passed bowel motions for 11 days. With each passing day, she had felt less and less normal. She wondered if she would ever Poo again. When constipation has taken its toll for such a long time the treatments will be accompanied by pain. Not having the treatment will lead to more pain. We had tried the standard treatments of pills, soluble powders, and various products to be squirted in private, all with no success. We readied the special injection. If it worked it work quickly. The injection was provided and we all held our bated breath in concert. Within 20 minutes we had achieved a result. The cheering was heard from the doctors’ office, at the nursing station. Yahoos echoed down our corridor. I felt the urge to perform a cartwheel. Smiles all around at the arrival of the VIP – Vast Incredible Poo – time to celebrate. Fireworks were lit and the Poo party began.

“Ahhhhh. You’d better call the water department, because their pipes may be blocked as I just passed a two-metre-long Grogan!”
This story soon spread throughout our hospice.
The next day I met the patient for the first time, “Ah, you must be Mr Grogan?”

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I think therefore I am? – Scarce Energy

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Photo by John Cameron on Unsplash

I encourage patients to blame me for shortening visit times, “the doctor said my visitors could only stay for 15 minutes as he wanted me to rest more.” I don’t mind being the bad guy, it is difficult for people to turn visitors away but at times they need to do it. Most people understand and will self-limit visits. Others are not so insightful and will outstay their welcome.

“They have come all that way to see me,” which is nice but some of the visits might be driven by guilt. Guilt from not having seen the patient for a long time. Whose needs are being met by the visit, the patient’s or the visitor’s?

Like petrol prices currently, energy is at a premium and people have to be careful how they spend their energy. Their battery continues to flatten and cannot be recharged again. The principles of energy conservation need to be applied to everything they do. Opportunity cost has never been more costly. Spending energy on one thing means something else cannot be done. This is a tough concept to understand unless you have experienced an illness that results in chronic fatigue, such as cancer, organ failure, and old age.

Life is not normal anymore. Life becomes full of trade-offs. The cruelty of life-limiting illnesses is they steal energy away but lead to appetite loss. Just when people need nutrition the most they lose the ability to derive the benefits of eating. Good symptom control can help a person feel more like their usual self, but cannot turn back time.
Simple activities of daily living become anything but simple for unwell people.

Losses accumulate day by day and each one is grieved. An ever-changing situation. It can be hard to catch up with, to know where you are, as things continue to change. Nothing stays the same for long. “Just let me have a small pause, a chance to find my bearings, please, just for a short time let me stop this rollercoaster ride. It’s going too fast and I feel dizzy. Please don’t waste my time or energy.”

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

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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.

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Palace of Care – White With No Sugar

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Photo by Brian Patrick Tagalog on Unsplash

It all started over a cup of tea, that was when they first met. They were at the local dance hall almost 60 years ago. Introductions were made over tea and biscuits and then they danced together for the rest of the evening. He was a gentleman and delivered her safely to her parents’ home. That was the start of their courtship and four years later they were man and wife. They moved overseas and enjoyed the big city life for several years. They toured the whole country and had adventures in many places, even visiting a famous underground city. They made their way home and settled down once the first child was on its way. Followed soon by number two.

They bought a house with a garden in which she planted her favourite camellias. All sorts of colours and she tended the plants with care. Nourishing them with her efforts over many years. The children started school and she could start work again. She worked as a secretary making sure everything ran smoothly in the office, putting her natural organization skills to good work. He organized his workshop well, he liked things to be well planned out. Their strong organizational abilities were another thing they had in common, their children were never late for anything.

English tea was her preferred beverage. There was nothing like a nice hot cuppa to warm you up in Winter. It had always been her favourite drink right from childhood. She wasn’t surprised to find out that tea plants were a type of camellia. She had always wanted to visit a tea plantation to see for herself how similar the plants would be to her camellias, but life was too busy. Everything went according to their plan, their children grew up and left home. Then the grandchildren arrived and the good life improved even more.

The organized couple’s plan worked out well, retirement plans had been worked out long in advance and many days were to be spent in their beloved gardens. The camellias never looked better and responded well to her increased presence. What they hadn’t planned for was for cancer to disrupt their well-considered plans. She became unwell and lost a lot of weight. She needed more help with the gardening as her energy had left her.

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I think therefore I am? – GPS

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Photo by Erik Mclean on Unsplash

We’re not the driver of the journey. We are more like a GPS. We are here to help them in their travels. The driver is in charge of where they want to go and can indicate which route they would like to take to the destination. We are there to help highlight hazards along the way as this is a journey we help others with all of the time. We can point out obstructions or detours along the way. We can give a head’s up about what may be troublesome up ahead.

We don’t want you to have any surprises, we will advise you which route may be safer. The aim is for a smoother journey. You need to know what is going on and we will be there to help you navigate your way through foreign territory. We can map things out for you and will make useful suggestions. Whatever happens, we will be there for you and will do our best to understand and fulfil your needs.

Tell me what you need and we will strive to make things happen for you. This is an important final excursion that you are taking and we will be alongside you each step of the way. We know what changes to expect as we enter different phases of the trip. We are also there to provide support to the traveller’s loved ones to ensure they are kept up to date with each leg of the journey. To guide them through the transition points as everything continues to change.

All of the above is what you can expect from our self-caring rechargeable battery-powered Gentle Palliative Steadying system.

Palace of Care – Something in Common

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Photo by Joshua Fernandez on Unsplash

I was introducing myself to a new patient.

He asked, “Can you speak Mandarin.”

I replied, “Yes, I can.”

“Where are you from?”

“I was born here.”

“What people do you belong to?”

“Hakka.”

“Really? Me too.”

“My family are originally from Guandong Province, Meixian County.”

“Mine too.”

“Wow, we could be cousins. How are you feeling?”

“Not good, I’m short of breath, can’t relax. Pain in my throat, and I’m having trouble swallowing. I keep on choking, even on water.”

“You must be exhausted.”

“Yes, I just want to sleep. I know what is going on, I don’t have much time left. This cancer has been really bad.”

“Yes, it has made you really unwell, I can see your arms are swollen.”

“Yes, that just happened yesterday, everything got worse in the past week, it’s too fast.”

“I’ve prepared my funeral plans, I’m ready to go, I know what is ahead of me.“

“We’re going to get you through this, and we’ll look after your family as well.”

“Do you or your son have any questions?”

“No, not at the moment.”

“You just let me know if you want to talk about anything, or if your family have anything they want to know.”

“Okay, thanks doctor.”

“I’ll adjust your medications now.”

“Thank you, I’ll see you later.”

Our families had originated from the same county and province of China and had then moved to different parts of the world as part of the Chinese Diaspora. Many years later we both met each other in the hospice inpatient unit. Having something in common really helped me to establish rapport.

I think therefore I am? – Different Jurisdictions

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Photo by Sandi Benedicta on Unsplash

The Land of Milk and Honey

“NSW  residents will have access to the highest quality care and pain management services at the end of their life, with palliative care and specialist health services to receive a record $743 million funding boost over the next five years.
Premier Dominic Perrottet said the 2022-23 funding boost is on top of the $300 million the NSW Government invests each year in palliative care.”

Quoted from this NSW government press release.

Meanwhile in Aotearoa New Zealand

In Aotearoa New Zealand we have to use milk and honey to make fundraising bake sale items. It is ridiculous that health care institutions have to count on sales of Chocolate Brownies and other baked goods in order to maintain free services to eligible patients in the community they serve. Literally having to sell baked goods in order to try to save staff jobs. We really do need a hand here, as we don’t want good patient care to have to depend on our baking supplies.

“Sorry Mrs Smith I can’t admit you because we have run out of flour. I would like to see you in the outpatient clinic Mr Kim but we can’t find any cocoa.”

Where is the kindness for some of the most vulnerable in our population? Palliative Care is not just about end-of-life care, but the care that is required in the time leading up to death, which might be 6 to 12 months or even longer. It is not just physical care that is required but psychosocial/spiritual/cultural care as well. The dying members of Aotearoa’s population deserve to be treated better.

“Sorry Mrs Ihaka, you can’t come become a hospice patient because we ran out of vanilla essence.”

What if hospices had to reduce services or shut down?

Who would care for all of the patients and families that we help?

Would the already over-stretched hospital sector be able to cope?

What if hospices were allowed to disappear?

Be worried.

It could happen.

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

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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.

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.