Palace of Care – Late referrals to palliative care are still common

Photo by Aron Visuals on Unsplash

We had only received the referral the day before. Our nurse went out to see the patient and found him to be likely dying, suffering from pain and great distress. His wife who had been a registered nurse for almost 30 years was still talking about taking him into hospital for further treatments. They were persuaded to come into the hospice by ambulance.

The junior staff had seen him and asked for me to see the family as well, as they just couldn’t get the point across. They thought that he was actively dying, but his wife and daughter were still talking about going into hospital for active treatments, whatever was available.

I walked carefully into the tension of the room and noticed that the patient was breathing heavily, was not able to respond, but otherwise looked comfortable. His daughter was breathing heavily, unable to respond because she was crying, and looked uncomfortable. His wife was breathing quickly, responded slowly to questions, and her discomfort showed on her face.

He was still doing fine only last week, then he started becoming more tired. He hasn’t eaten anything for the past two days, and he wasn’t able to get out of bed today. He almost had a fall trying this morning.

I explained what was going on. He’s critically unwell, and we are worried that he could die at anytime. I don’t think that going to hospital would be of any benefit at all. He might die during the transfer to hospital, as he is just too unwell.

His wife looked puzzled, as if she was trying to work out a jigsaw puzzle but there were some crucial pieces missing. We talked about her nursing career, that prior to training to be a nurse that she had worked in a residential care facility as a caregiver. She had looked after many elderly patients, and had looked after them when they were dying. She recalled what happened as they approached death. That her patients would become more tired, would lose their appetite, would have trouble getting out of bed, and some of them would start to fall…

Oh my God, he’s dying, I don’t know how I didn’t recognise it before. He’s dying isn’t he?

Yes, he is, and he might die at anytime. He might only have hours to short days left to live.

[She nodded as she wrapped her arms around their daughter] Why didn’t they tell us?

Who?

His GP and Oncologist. They kept on saying that he was really unwell and that time was short, but I thought that they meant he had months left to live. He was only referred to hospice two days ago, by our GP. I thought we would have much longer than this.

I’m sorry. We are going to do our best to keep him comfortable, in whatever time remains. Please let us know if there is anything that you need.

Unfortunately they only had four hours to prepare themselves before he died.

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