Category Archives: Practice

Palace of Care – Maturity Crash Course

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Photo by Kyle Glenn on Unsplash

She was still a child when we admitted her to our inpatient unit. 21 years old but she acted more like a teenager. She had been unwell for five years with bone cancer and had undergone many treatments. She had spent a lot of time in hospitals and had moved from her hometown to be closer to live in the same city as the treatment centre. In her last hospital admission, she had been troubled by a racing heartbeat and had been reviewed by heart specialists.

She was nervous on arrival at the hospice, and she wanted us to discuss any changes with her Oncologist. She had been under his care since her first treatment and she wanted him involved in any treatment decisions. We were happy to involve him and discussed our proposed changes with him. He said that he would defer to us when it came to palliative care issues as he felt we had more experience. Over the next week we built up trust with our young patient, and we were able to control her pain well enough that she could go home.

After two weeks she had become unwell with worsened breathing and ended up in the hospital. They scanned her and found cancer in her lungs had worsened. She asked if she could be readmitted to hospice and a transfer was arranged for the same evening. Medications to ease her breathing was started.

She was reviewed on the ward round the following day and was started on high-dose corticosteroids which initially helped her breathing. A few days later she asked to speak to the doctors. She said that she understood that her lungs were in bad condition, and without medication, she would die. She asked if she could stop her medications. She had discussed this with her family and they wanted to support her decisions.

She chose to stop her treatments and wanted nature to take its course. We provided symptom control medications to keep her comfortable. She died a week later.

Between the first and second admissions, she had grown up a lot. A young girl had grown up into a young woman over a few weeks. A brave young woman who took control of her situation and chose to stop active treatments, opting for comfort care only. She went out on her terms and did it her way.

Palace of Care – Palliative Plumbing

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Photo by Paolo Chiabrando on Unsplash

Our patient was dying of end-stage cancer, it had spread throughout his body causing significant pain. He had been having trouble passing urine, over the last two days. This had worsened and our ultrasound bladder scan showed urinary retention with a collection of 1.5L. One of the more painful conditions that people can have. The bladder’s walls are elastic but are not meant to stretch that far. Many nerve endings were firing off pain signals, our patient writhed in his bed. His wife and daughter were distressed seeing their lovely man in such discomfort.

The doctor on call was called in at 1 am after the nurse had tried twice to catheterise our patient without success. The urinary catheter could not pass through a blockage despite the nurse trying all the usual tricks. The doctor attempted catheterisation three times before calling me in. I arrived just after 2 am and decided that I would have to perform a more invasive procedure. The patient was too distressed, he was too unwell to be transferred to the hospital. I would have to drain his bladder using a needle, something I had never done before in my 20 years of medical practice.

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Palace of Care – A Self-Sufficient Family

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Photo by Jay Wennington on Unsplash

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 – Nerve Block

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Photo by Manuel Chinchilla on Unsplash

I don’t think of myself as a proceduralist. I don’t like performing invasive procedures as I don’t like to cause pain if I can avoid it. I will do them when they are necessary but it is not a natural fit for me.

The patient was a 39-year-old mother of a 7-year-old son. She was admitted for pain control and I thought she would not have much time left to live. She had known this herself for the past six months. In preparation, she had purposefully reconnected with her ex-husband the father of her child. She wanted to make sure that they would have a loving relationship after she had died. She had been reluctant to come into hospice as she had wanted to spend as much time as possible with her son and other family members at home.

We wanted to sort out her pain as quickly as possible to get her back home. We managed to sort it out within the first three days. This was good as she had met with our social worker and the final adjustments to her will were being made. Her lawyer had been engaged and would be arriving in three days for her to sign the final papers. It was important to have this sorted out as she wanted her house to be transferred to her ex-husband for him to have a house to raise their son in. She had worked hard to buy her house, it was her pride and joy. She wanted her son to have a stable home environment.

Overnight she went to the toilet but on the way back to her room she heard a loud crack from her right hip, followed by overwhelming pain. She could no longer support her weight and managed to call out for help. The nurses needed to use the lifting hoist to get her back in bed, which made her scream.

I reviewed her the following morning and I recognised a familiar pattern. Shortened leg, twisted at a non-anatomical angle, tender to touch and excruciating pain with the slightest of movements. Fractured hip, likely broken through a metastatic deposit. We talked about going to the hospital but she did not want to go anywhere. She said that she had already been to the hospital too many times in the past. She thought her time was limited and she wanted to spend it in hospice.

We gave her stronger pain relief which relieved her pain but because of her poor overall condition, it made her sleepier. She didn’t want to be sleepy, as she still needed to sign her new will. Her son’s future welfare needed to be sorted out before she died.

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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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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.

Palace of Care – Four Weddings and a Funeral

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Photo by The Good Funeral Guide on Unsplash

He was far from home, many kilometres away from his tribal lands. He had come to the big city for cancer treatments and to be closer to the few family members who lived close to our catchment area. The treatments had not worked despite everyone’s best efforts. His condition deteriorated at an increasing pace. The Oncologists thought he was dying, that he only had days left to live and they arranged for him to be transferred to the hospice for symptom control and likely end-of-life care.

We managed to calm down his physical pain and nausea with urgency. When he was more comfortable his appetite improved. Everything was going well, we started making arrangements for where he would go next. Along with his family, he had chosen a hospital-level care facility that would be easy for his out-of-town family to visit.

On the day of his planned transfer, without warning, he collapsed and died. Death inside a hospice is not an unusual event. For Maori folk, after death, the usual preference is for the body to be embalmed and then for it to lie in state at a family home for a few days. Then it will make its final journey to the mana whenua/tribal homeland for burial.

Our patient and his family were all from out of town. They did not have a place of their own they could use to host a small funeral. They asked if it would be okay for his embalmed body to return to hospice for them to hold a tangihana/funeral.

We discussed it as a team and said “Sure, let us know if we can help.”

His family were grateful to be able to farewell him together in their traditional way.

In all my years of working in hospice, there have been more than four weddings on-site, but this was the first funeral.

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.