Tag Archives: communication

Adapting to a brave new world. Telehealth in palliative care

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We’ve certainly had a change in our practice of palliative care with technological developments and more recently, change has been accelerated by the pandemic.

This fascinating work by Palliverse’s very own Dr Anna Collins and teams at St Vincent’s Hospital, North Adelaide Palliative Care Service and Peter MacCallum Cancer Centre really accurately described what it’s been like for me working as a palliative care physician using telehealth. It’s been terrific for some aspects – we can quickly review the patient without having to drag them into hospital, preserving their energy and disrupting their lives less. However, I really struggle when patients are deteriorating and when they speak languages other than English as their first language.

Their research found that “palliative care patients and doctors at each site found telehealth wasn’t only acceptable (91 per cent and 86 per cent respectively) but also satisfactory (72 per cent and 65 per cent) in most situations.”

In their studies, “involving interviews and surveys of 130 palliative care patients and their doctors following a telehealth appointment, patients in rural and regional area reported telehealth as being highly satisfactory. Doctors too rated it highly satisfactory when a visual link (not just audio) was used, or if the appointment was for a routine review.

“However, patients were less satisfied when care goals or future planning were discussed, and doctors reported it as being less satisfactory when the patient’s condition was changing or rapidly worsening, or if patients spoke a language other than English.

“And both patients and doctors found telehealth unsatisfactory in the presence of changing or unstable symptoms, such as pain which required medication adjustment or change.
image of older patient speaking with a doctor on an iPad screen
Photo by Tima Miroshnichenko on Pexels.com

Safer Care Victoria and the Palliative Care Clinical Network hosted a webinar ‘Clinical Conversation Webinar: Adapting to a Brave New World – the role of Virtual/Telehealth in Palliative Care’

The webinar recording is now available on the Safer Care Victoria Clinical Conversation Webinar Series website.  

 

Palace of Care – Heart Follows Mind

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Photo by Kelly Sikkema on Unsplash

Her brain had no trouble accepting what was happening but her emotional heart took longer. The love of her life for over 45 years of marriage was dying. The doctors had warned that he might become confused and agitated as his condition deteriorated. He was comfortable and the pain relief had taken a few days to optimise. He was more relaxed and then deteriorated. He became less lucid as we neared the end of the week.

A clash of cultures became evident thanks to some of the visiting friends of the family. “You have to ask your doctors if they will give infusions to your husband. In China, he would be having lots of intravenous fluids, and other treatments such as tube feeding.”

We had to explain that artificial hydration would be too much for the dying person to handle, and would worsen skin swelling and likely worsen his breathing. We did not want to add to his already heavy burden of symptoms. His wife indicated she understood our rationale. We explained he could die at any time.

Intellectually his family could accept the ongoing bad news, but when it came to emotions it would take much more time. Their loved one was dying and all they wanted to do was to help but didn’t know how to. Mouth care was a task that we delegated to them. Our counsellor was asked to talk to the family.

Their brains understood the words we shared, but their emotional hearts couldn’t understand the language and operated on feelings instead.

Palace of Care – A Reluctant Patient

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Photo by DDP on Unsplash

I first met our reluctant patient in the outpatient clinic with his girlfriend. It had taken a number of phone calls before he would come in for assessment. He was scared of hospice and had resisted his Oncologist referring him to us. He didn’t know what we were about and what he didn’t know frightened him.

He had been unwell with cancer for over a year with severe pain making him unable to sit or lie down for more than an hour at a time. Sleep was difficult for him and he was woken up several times a night by burning pain that spread down his right leg. He wasn’t keen on any changes in medication, and it took much negotiation for him to allow us to increase the doses of the pain relief agents he was already taking. He didn’t want to consider anything new, just yet. As his pain was so severe I offered to admit him into the inpatient unit but he wanted to stay at home.

Over the next month, his pain did improve but any relief would only last for a few days at best. We again offered to admit him for pain control but he still wasn’t ready. Some weeks later the pain had worsened bringing tears to his eyes. His mother and girlfriend were exhausted and felt helpless as they couldn’t help reduce hisWith encouragement from his mother and girlfriend he agreed to be admitted.

We started him on a different opioid that afternoon. The next morning he was full of smiles. He told us he was pain-free for the first time in two years. He stayed a few more days as we helped him with other issues, and then he went home. As well as good pain control we had built a trusting relationship that would help during his next admissions.

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.

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? – Gradients

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Photo by Annie Spratt on Unsplash

I went to medical school in the previous millennium. Back in the days when the standard dress code was to wear a shirt and tie. To tell the truth, it didn’t matter too much what you wore as it all had to be hidden underneath the doctor’s white coat that we would wear. I probably would’ve gotten away with wearing just a collar and tie underneath my white coat. I would’ve needed to have appropriate pant legs and footwear but probably could’ve gotten away with wearing pyjamas underneath the coat. Of course, this never happened as I was as sheep-like as everyone else and conformed to the standard dress code.

Once I graduated I became braver in terms of dress sense and I started wearing cartoon ties and otherwise quirky ties. I built my collection during my travels. I bought ties in places like Taiwan, Thailand and Kaitaia. Halfway through my first year of work, I went on a clowning trip in China led by Dr Patch Adams. This was followed by a reunion with my childhood friends in South Korea. On my return, I came to a decision. I decided to retire. All of my standard ties. I would only wear my cartoon ones from thence on. Over the next 21 years, I continued to wear Disney characters, Looney Tunes, Superman, Popeye, Fish, and many more.

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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? – 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.