Palace of Care – Sat Sri Akal

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I prepared to see our patient and their spouse. They had been doing well until the past week. Then the weakness and fatigue worsened. They didn’t have the strength to leave the bed. Their spouse looked after them well. Their children were parents too. They were proud of their grandchildren. A close family but COVID-enforced separation had meant they had only seen one of their children once in two years. The same two years that cancer had taken over.

The spouse was worried about sedation from medications. The patient was reported to be in a lot of pain and could use more medication. Breathing was laboured. The patient had not spoken clearly in the 48 hours preceding the admission. As soon as I entered the room I noted the distress on the patient’s face, mirrored by the look of concern worn by their spouse. I needed to establish rapport quickly, as the suffering needed to be attended to urgently. I recognised the traditional turban and greeted them with, “Sat Sri Akal.” A look of surprised appreciation crossed over the spouse’s face. The patient stared blankly at the ceiling in a confused manner.

“They’ve been uncomfortable overnight with pain. I need to do something about it. I’m worried that it isn’t safe to swallow anymore. This is what happens at the end of life when someone is dying.”

“Can I feed them, they haven’t eaten since yesterday.”

“When someone is very unwell they can’t handle the food. They can’t swallow safely and it might end up in the lungs. It might cause vomiting or diarrhoea. I don’t want to make the situation worse or increase the suffering. We need to give medications by injections, under the skin.”

“Subcutaneous?”

“Yes, that’s right. It will be the safest way to give medications, to make sure they go where they are needed.”

“Okay, how much time do we have left?”

“I’m sorry, your spouse is so unwell, they might only have hours to days left to live. They could die at any time. I’m sorry.”

“No, no need to be sorry. It is part of life, it is something that we have to face at some stage.”

“We will do our best to make them comfortable, no matter how much time is left, we will keep on trying. We want to calm down the pain, calm down the breathing, calm down nausea and distress”

“Thank you, doctor.”

“How long have you been together?”

“44 years.”

“I’m going to change the medications now. Please let us know if you or your spouse need anything. Take care.”

I think therefore I am? – Everyone is Different

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Everyone is different and has different ways of handling suffering. Suffering is a subjective feeling, and the same stimulus applied to different people can lead to different reactions or responses.

When I was in primary school all the children were not keen to see the school dental nurse. I remember going when I was a five-year-old. Back in those days, the dental nurse wasn’t allowed to inject any local anaesthetic, thus any cavities that required treatment would be done so without numbing medications being used. I experienced having my teeth drilled and I was able to put up with the pain by distracting myself. I could almost laugh the pain away in my mind. It was still there but I could frame-shift away from it. Despite many painful encounters with the dental nurse, I was never afraid of going there. A lot of people in my generation developed dental phobias which have persisted into their adult lives.

I can handle physical pain and found myself resorting to my five-year-old self’s tactics when I had my one and only Taiwanese Foot Massage. People willingly pay money for this service. You step into the communal torture chamber on foot. Your feet are first soaked in hot water with pleasant-smelling oils added. Then the masseur dries off your feet before proceeding with their treatment. Around the room, there were groans and screams as people’s foot bones and joints were poked, prodded, compressed and generally abused. The pain was intense and I had to shift my consciousness to my other place.

The physical pain I can handle. Nausea not so much.

Everyone is different and can handle/or not handle different things.

Suffering is defined by the sufferer and the clinician’s role is to observe and adjust the treatment, to try to decrease the suffering.

It is not the clinician’s role to judge a person. Most of us haven’t been to law school or worked as a lawyer. We need to stick with what we have been trained for and do our job as well as we can.

I think therefore I am? – Not On My Watch

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It distresses me to hear on the grapevine of how patients, who have chosen to have assisted dying, in other palliative care units have been treated by staff. Following the revelation of their wishes I have heard of staff treating the patient differently. Not wanting to engage with them anymore, giving them the ‘cold shoulder,’ because of the choice they have made. Some staff refuse to attend the patient even if they push the call button when they need help.

It’s called discrimination. Treating people differently because they are different. In these cases because they have chosen something the staff do not support. A difference of opinion leads to stigmatisation and a change in the mindset of the caregiver. This does not fit in with my own care philosophy. I will not abandon someone due to the choices they make not fitting with my own beliefs. I am in my role for the sake of the patient and their family. They are not there for the sake of my existence.

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Palace of Care – Respect

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The first clinical task of the morning was to take care of the patient who had died overnight. The family had been holding their vigil for the previous days. There had always been someone there at all times. They didn’t want our patient to be alone. Having the family staying had helped to make our patient more comfortable.

The patient had died three hours ago. Their skin was cold to touch. Pulses were absent. There were no heart or breath sounds during one minute of listening. The pupils did not react to light. Confirmation of death would be followed by certification of the death.

Cause of death was recorded on the death certificate, in as simple terms as possible. Our patient had died of metastatic cancer.

A letter was written to the general practitioner as we didn’t want there to be any surprises.

The dead person needed to be treated with as much respect as the living.

Their family needed to finish their vigil, and to move on.

The funeral director was called and they came to collect the body.

Rest in peace.

I think therefore I am? – A Sense of Urgency

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The one thing I want my students to learn about palliative care patients is they need to be treated with a sense of urgency. Life-limiting illness is time-limiting illness. Therefore patients’ time must be treated with respect, as it is precious and beyond price.

If someone only has six weeks left to live and you make them spend six hours waiting in a clinical setting, you are robbing them of valuable time. Time they could spend doing important things. Having important conversations, meeting people possibly for the last chance to say goodbye. Bringing closure to long-term relationships. Time spent with friends and family. Time they could choose to do, whatever they want to.

Please do not waste their time, as they can never have it back again. No matter how much money someone has they can never buy back time. Please treat dying people’s time with respect. It is their time, not your time. Please treat palliative care patients with a sense of urgency. Time is running out for them.

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

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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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