Palace of Care – Familial Protection

Photo by Mark Koch on Unsplash

The family were trying to protect our patient. They knew that his time would be short, that he would die soon. They didn’t want him to know this as the last time he had been given such bad news he had reacted poorly. They said he had been in tears for two days after the hospital doctors had told him bluntly that he could die at any time. They didn’t want a repeat of what had happened. If he only had a short time left they wanted him to enjoy it as much as possible. This was what his life partner wanted, the person who knew him better than anyone else. The love of his life.

Did he know what was going on? Probably. He had said he thought things were bad. We had not denied this. He was the one feeling every single discomfort. He was the one who was exhausted from lying in bed doing nothing. He was the one whose body continued deteriorating on an almost daily basis. He was the one who had asked to be admitted. He was worried about how his family were coping with looking after him at home. He had been told weeks prior to this admission that he possibly only had days left to live. When we asked him if there was anything he still needed to do, any unfinished business, the reply was,” No. I’ve done everything I can. I’ve done well. I have no regrets. I have a good family. We raised our children well.”

Our duty of care is to our patients. “First do no harm“ is the first principle we follow. Would telling him what he probably already knew be of benefit or would it cause harm? It was unclear as we didn’t know him well enough. For some people knowing they might only have a few days left could provide relief. They might be thankful that their suffering would not go on for much longer. For others, the short time left would provoke anxiety and distress. They would be upset by the thought of having to leave their family for the final time. If he were to directly ask us, we could not lie to him. But if he never asked we would not raise the question ourselves. His partner had made the decision. The survivors of his death had to be given the opportunity to do what was right for their family. No matter what would happen, we promised that we would try our best to keep him comfortable in what time remained.

I think therefore I am? – No Sale

Photo by Alexander Cifuentes on Unsplash

Despite my best efforts sometimes people just aren’t interested in what I have to sell. I am trying to work in the best interests of the patient. I want to make them as comfortable as possible. If there is pain I want to alleviate it as much as possible. If there is breathlessness I want to do something about it. Untreated distress in a patient will lead to distress in their family members. Similar to the care philosophy in Paediatrics, in Palliative Care practice you need to consider the patient, and their loved ones as the unit of care.

The duty of care is to the patient above all but consideration for their loved ones is essential. They will be the ones who will survive this episode of care. Reduction of their distress needs to be considered secondary to reduction of patient distress. Most of the time we will all be on the same page. The patient wants their distressing symptom relieved, as do their loved ones, as do the clinicians. Everyone is in agreement and things are relatively simple.

This is not always the case though. At times I identify suffering in a patient and I will recommend a course of treatment. All treatments will have side effects, with a lot of the medications we use sleepiness is a common side effect. The patient may not want to feel sleepy and will try to put up with the distressing symptom themselves. Or their family will want them to be as alert as possible, which may come at the cost of comfort.

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Palace of Care – Saying No – Part 1

Photo by Debby Urken on Unsplash

In his professional life he was used to taking charge, of taking control and at times this bled into his personal life as well. His wife’s mother was unwell with widely spread cancer, she had been admitted into the hospice for symptom control of pain, breathlessness, and nausea. He had always been close to her right from their first meeting, he was probably closer to her than he was to his own parents, and even called her Mum. She had always been there for her children and their partners, and he really wanted to be there for her. He wanted to make sure that she was treated right, and he had a small inkling that his manner might come across as intimidating, but that was useful in police work. He just wanted to make sure that Mum was being well looked after, it was what she deserved.

She was a Pasifika lady in her early 60s, with end-stage cancer to her liver, lungs, and many bones. She was the frailest patient in our inpatient unit and I was worried that she might be dying. She was well cared for by her family who were always with her. Her husband of similar age, two daughters and a son-in-law, who I found out was a police officer. He had already caused a bit of a disturbance in the unit as he had spoken in an aggressive manner to some of our nurses, and was impatient. The family were all tired, worried about our patient, and stress levels were high. The family members all seemed to defer to the policeman who had taken on the role of family spokesman. The patient was fatigued but had not slept much in the past days because of uncontrolled pain. The first time I saw her I thought to myself that I wouldn’t be surprised if she crashes quickly.

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I think therefore I am? – Clarification

Photo by Jeremy Bezanger on Unsplash

The following are my own personal professional views and do not represent those of my employer or of Palliverse in general.

I’m not interested in debating the pros and cons of assisted dying, everyone is entitled to their own opinions. In Nov 2020, 82% of eligible voters voted in the referendum, 65% of the voters supported the End Of Life Choice Act 2019. Aotearoa/NZ clearly stated it’s opinion last year, and in two days’ time it will become law.

I do not want my patients to be caught in the middle of two warring ideologies.

I am not here to argue, I am here to listen to my patient, I am here to learn from them. They are the expert when it comes to what they are going through and their suffering is defined by them, not by me.

I think that we in Hospice/Palliative Care need to build a bridge and get over ourselves. Our focus should be on our patients, not on ourselves.

Please treat patients with respect, they weren’t born yesterday, but they might die tomorrow.

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