Tag Archives: shared decision making

I think therefore I am? – Speaking from the gut

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Photo by Towfiqu barbhuiya on Unsplash

I often joke about my increased use of gut instinct over the last ten years as my gut has gotten bigger. The truth is I have been using more intuition. Sometimes ideas just feel right. I need to tune into the person that I am assessing. I need to use empathy to try and discover what makes them tick. What drives them? What is important to them? What keeps them going despite insurmountable odds? Who are they? What goals do they still have, even at the end of their life?

The practice of mindfulness meditation has helped me to answer some of the questions. It has helped me in trying to obtain a ‘read’ of the people I am interacting with. It allows me to meet them as they want to be met. On their terms, using language and concepts they can understand. I will listen to you. I will be guided by you. I am here to help, in a way that you want to be helped. I am here to learn from you because you are the expert when it comes to yourself, not me.

I know my place. I am not your boss. I am not your parent. I may be friendly but I am not your friend. I need to maintain my professional distance in order to remain objective in the care I provide. I need to be able to connect with you in order for us to understand and work with each other. We will come up with a bespoke plan together. Any decisions made will be shared between us. A true therapeutic partnership is what I am trying to grow between us. It will take work on both sides in order to make it happen.

I promise you that I will try my best to do right by you. I wish I could do more. Together we can work together to try to improve your quality of life. I will try to look after you as a whole person. You are so much more than just a physical body. There is a story about you and I am here to hear you tell your story. I will listen actively and allow you to talk without interruption. I’ll be your guide for what may be your final journey.

Any questions?

Palace of Care – No Bullshit

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Photo by Brett Jordan on Unsplash

She hadn’t trusted her daughters and wasn’t keen on medications in general. She had tried to hide how unwell she was. They had wanted to help her but she had felt so unwell that she couldn’t accept their help. Everything had hurt, her head, her skin, even her hair. Nausea was her constant companion, and vomiting was the guest who kept overstaying their welcome. She didn’t want to go to the hospital, she said she would give hospice a go.

“I feel heaps better today.”

“What’s going on?”

“My pain is gone, I don’t feel sick anymore since the elderly doctor started the medicines yesterday.”

“That’s good. Did you have some breakfast?”

“Yeah, I had some porridge, but they didn’t cook it the way I like it. There was brown sugar but it wasn’t quite right.”

“You managed to keep it down.”

“Yeah, first time in a while.”

“Good. What do you think is going on? What did your doctors tell you?”

“I like my cancer doctor, he’s a Pakeha but married to a Māori. He told me like it was.”

“Straight up?”

“Yeah, none of that bullshit the others had used. He was honest, and let me know what was going on.”

“You’re not going to get any bullshit here. What did he say?”

“The cancer has spread from my lungs, has gone to my head. There aren’t any treatments left for me.”

“What do you think has been going on lately to make you feel so bad?”

“Probably the cancer getting worse.”

“Yeah, I think the cancer in the brain has grown bigger. It’s giving you headaches, making you feel sick and vomit. Has your thinking been not so clear?”

“Yeah, it hasn’t been right since the radiotherapy and the chemo. If anyone asked me if they should have the treatment for cancer, I’d tell them not to.”

“It hasn’t helped?”

“No, I feel so much worse.”

“You gave it a go. I need to check with you about what you want. There’s a treatment that might help you, but it probably would only work for a short time. You could either try it or not. It’s up to you and the whānau.”

“Hmm, I’m not sure. What do my children think?”

“We want you to try mum.”

“Okay, I’ll try it. Thanks for being honest with me.”

“No worries. We’ll give it a good go, and see what happens. E noho ra.”

“See you later Doc.”

Palace of Care – Sold

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Photo by Fang-Wei Lin on Unsplash

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.