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.
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.
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.