Monthly Archives: September 2023

Palace of Care – A Different Question

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Photo by Brett Jordan on Unsplash

What do I need to know about you to be able to look after you better?

Nothing much. I just want to be able to go out for a smoke. I asked them about it in the hospital but no one wanted to help. They didn’t want to listen to me. I didn’t even miss the smoking so much. I just wanted to go outside.

It’s important for me to listen to you, isn’t it?

Yeah, it means a lot to me that you guys will listen to me.

I feel more comfortable today. I don’t remember everything about yesterday but I was feeling bad. The pain was bad.

I’d like to work on your pain some more and try to get you comfortable.

Okay Doc, thank you.

I’ll see you later.

SCM – Daily Dose of Suffering

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Photo by Chandler Cruttenden on Unsplash

Four years ago I went on a Wellness Retreat. Some of my colleagues laughed at me once I had returned and discussed some of the activities I had paid a lot of money for. During the retreat, I ate much smaller meals than usual. I woke up earlier than usual to do yoga, followed by a tiny breakfast and then hours of hiking. Another activity was fasting for 36 hours, 24 hours of which were spent in total silence. The activities were interesting to try but I have not continued with most of them. I also learned about thermotherapy, with exposure to heat in the form of a 90-degree Celsius sauna followed by ice baths. The cold water exposure is something I have continued to this day.

I shower as usual using warm-hot water. At the end of each shower, I turn the water temperature to total cold. This feels awful for the first 10 seconds and my mammalian dive reflex is triggered, with much deeper breathing. During the winter months the water is extra cold. The next 10 seconds are less unpleasant. By the time I have reached 30 seconds, I can tolerate it, and my hands and feet have become cold at which point I turn the water off. As soon as the water stops a warm feeling surges through my body and I sure do feel alive.

The cold showers are my daily dose of suffering and I feel they have built up my resilience over the years. I will continue BBRRRRRRR.

Palace of Care – Plot Twist

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Photo by Annette Sousa on Unsplash

Some lives are difficult, relationships do not always go smoothly. Every person has problems, every couple has problems. Some couples have more problems than others. People are not always at their best and might have limited support available. Many people cope by self-medicating with drugs and alcohol. The use of substances worsened their relationship over the years. Her family had never approved of him, and let him know it.

Everything changed when she became unwell. When she really needed his support and love he showed up. He stopped using substances, and the large poultry was cooled rapidly. He was there for her at the clinic appointments. He was there during the hospital admissions. He was there for her for her hospice admission. They were surprised, given the circumstances, that they were so happy. They had privacy, they could spend time together, just the two of them.

She told us that their time spent in hospice had been the best weeks of their entire marriage.

SCM – Take a Break

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Photo by Karim Mansour on Unsplash

Some interactions in palliative care with patients and their families can be hard to handle. e.g. breaking bad news to younger people. Some conversations are intense and emotionally draining. In any hospice inpatient unit (IPU) the staff may need to have a number of such conversations with different patients during any given ward round. Often the team may be about to visit the next patient and may still have remnants of the previous case on their mind. This is when I would lead everyone away for a short break.

It might be heading upstairs for a hot drink and a quick snack. A short walk outside for fresh air and a dose of sunshine or it might be heading out into the rain. A reset /restart button is activated. The team is led away from the site of upset feeling for five minutes of self and team care. A brief respite from the frontline. Good role modelling, leading by example.

We might only have been away for a short period of time but on our return we feel better and more open to tuning into the next patient’s problems with our full attention.

If you are a clinician why don’t you try adding small breaks into your schedule after intense patient encounters? Do they work for you?

I think therefore I am? – Do Not Disturb

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Most hospice inpatient units will have do-not-disturb signs available on each patient’s door. It can be hung out by the healthcare team when a patient is being assessed or if something is being done, e.g. patient bathing. It is used to indicate to other people not to come in as the healthcare team is busy with the patient. This is in contrast to most hospital settings I have worked in that do not have these signs available for use. Closed curtains around a bed do not stop people from barging in. Privacy can become a distant memory.

Are do-not-disturb signs patient-centric or staff-centric tools? Could a patient and their family be empowered to use the signs when they want some privacy? Intimacy is not encouraged in clinical spaces but may be something which is deeply missed. Could a more patient-focused do-not-disturb sign be created? A time-out-please sign. The patient might want to have an important conversation with a loved one. They might want some time to themselves away from the healthcare staff. They might want to do things that represent normality to them. When time is running out it becomes precious and I would like people to spend their time in whatever way they choose.

SCM – Self Care Microdoses – A walk in the garden

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Photo by Drew Coffman on Unsplash

I have had to focus on self care this year as it has been challenging at times. I’ve had to shift my focus away from saving up all my self care for a holiday as I need more regular doses of self care. In fact if I had not done self care activities on at least a daily basis I would be in much worse condition than I am at present.

I’ve been working on microdoses of self care. This might be as short and simple as a five minute walk in the hospice garden. This is a combination of leaving my usual seated in front of a computer working position and going outside. Five minutes of fresh air and occasional sunshine in between the recurrent episodes of heavy rain we have experienced in Auckland this year. A small dose of exercise for my body which is at risk of pressure injury from prolonged sitting. A chance for my eyes to focus on objects which are further away than the screens I look at while doing computer based work. To feel the wind through my hair. To smell the flowers and the trees.

There is a slightly more shaded area of the garden path I spend a bit more time in. If you stop at the right spot and close your eyes you feel almost transported into a forest. You hear the wind rustling through the trees. There is birdsong from nectar feeders who have had plenty to eat in recent weeks. I walk around the garden and I might bump into some of the many volunteers who keep the garden looking its best. I try to stop and chat to the volunteers as often as I can. To thank them for what they do for our organisation.

Five minutes, 500 steps. A short workout for my otherwise sedentary body. A couple of times per day on a good day. It all adds up, every little bit counts.

What self care activities have you done for yourself today? What can you do for yourself that will take five minutes?

Palace of Care – Back to the Whenua

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Photo by Casey Horner on Unsplash

Things were changing on an almost daily basis. Worsening fatigue led to less activity and more sleep. His appetite was dwindling away as his pains continued to grow. He told us he wanted to go to where he came from. Back to his ancestral homelands. He wanted to revisit where he had grown up. He wanted to see his extended family again. His window of opportunity was closing. If he didn’t go soon he would not be able to. The clock continued to tick away. Time was running out.

No-one knew how the trip up North would go but he was so keen to try. One last road-trip with all of his children. It would be the first time his youngest had ever been away from home. He wanted to introduce his new baby to the rest of the family. To show her where he came from. She probably wouldn’t remember much as she was too young, but everyone else would. “That photo was taken when Dad took you home for the first time.”

We wished him luck as he gathered himself and left the hospice for the weekend.

Palace of Care – No Surprises

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The blood tests were all deranged and matched what I had found on examination. She was dying. I maintain a no surprises policy. I don’t want my patient or their loved ones to be surprised by sudden deteriorations which could lead to death. They needed to know. I had to tell my patient and her gathered family what I feared was happening.

“I’m worried that everything is getting worse. If this continues I think there might not be much time left, maybe only days. I’m sorry to have to discuss this. I think you are dying. I’m going to try my best to keep you comfortable. We haven’t tried the steroid treatment before. I’m hoping that it will help you feel more comfortable.”

My patient was too weak to talk, her face was covered by a towel. Her family said they understood and thanked me for telling them what was happening.

“I’m sorry this is happening, I wish I could stop it.”

I was surprised when my patient reached her hand out to grasp mine.

She said, “It’s okay. Thank you for helping me.”

I swallowed hard and promised I would keep on trying to make her comfortable.

As soon as I left the room the family made arrangements for her child to come in from school. They had to prepare him for what would happen.

She died less than 12 hours later.

I think therefore I am? – Please don’t leave me.

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We humans are social animals. Without companionship we do not do so well. Loneliness is a major health risk factor for the development of many illnesses. The less socially connected we are the worse we may feel emotionally but also physically. Acts of human connection enliven both the donor and the recipient. It feels good to help someone else out. A win-win situation, you both get something out of it. It feels good to belong to something. To belong to a group or a tribe.

How does it feel when people with life-limiting illnesses are discharged from clinic for the last time. They might’ve been seeing their care team for years in some cases, all of a sudden they have lost the support. They might feel bereft. The closure of a relationship. They had always been there for me and now they are not. A void is created, can it ever be filled by anyone else? A feeling of rejection, of abandonment may be experienced. A shove off the edge of a cliff, into free-fall. A tie severed. We will never meet again, we just had our final goodbye. I thought it would last forever. People change over time, no matter how much they try to stay the same.

Goodbye, I have nothing else I can offer you, but you can come and see me again in six weeks. I wish you all the best. Please take care.

You said you’d always be there for me, through the worst while hoping for the best. You left me hanging. I didn’t know what was happening, the world seemed to spin around me like a not so merry-go-round. You told me to leave but I have no other place to go. I still need help. What did I do to deserve this? Was it something I said? Was it something I chose? Can we just talk? Please?

Please don’t go…

I think therefore I am? – Speed Dating

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Recently I was at a research meeting in my role as a clinical advisor. In the gathering were a number of kaumatua (Māori elders.) We were all asked to share our pepeha, our introduction. Each member of the group was given time to talk about themselves. Where they were from. Who their family of origin was. How did they get to Aotearoa New Zealand. Which mountain and river they are connected to. The kaumatua in the room listened intently to each person’s story and they were actively trying to find connections with their personal stories. It was almost like speed-dating, trying to build rapport, to build connections between previous strangers. The Māori call it whanaungatanga – getting to know each other. Something that is really important for people who are planning to work together. 

Again this makes me think about how we do things in the clinical realm. When we first meet our patients and their whānau/family each party are strangers to the other. In Western medicine the getting to know each other is usually one-sided. We want to know as much about the patient as possible without giving away much about ourselves. What would it be like if we introduced ourselves through a pepeha? Would it lead to more opportunities for human to human connection? Could the establishment of rapport possibly lead to the establishment of trust? You know what? I’m going to give it a go. I’ll let you know what I find out in a future post.