Life in a Hospice: The view of a healthcare assistant

Thought for the Fortnight

comforting hands, courtesy of Freepic

This post is another in a series of posts setting out passages from interviews with people interviewed as part of my research over the years. Earlier ones were about a hospice chef (see here), the death of a toddler from AIDS told movingly by her mother (here) and a mother facing the move from home of her son with learning difficulties (here).

This is an interview with a woman I call Fiona, who was a healthcare assistant in a hospice, interviewed nearly twenty years ago, along with a lot of other staff. She had worked there for ten years, did all sorts of very basic manual and other work and, as will become obvious, absolutely loved her job.

I think there are many lessons for us all in this interview, but I will let you find them yourself.

Fiona starts by describing her work with patients:

The healthcare assistants and nurses all work together. We are not allowed to administer medication, but we do quite a lot of the hands-on work – wound care, mouth care, toileting, feeding patients – everything, really. We are also the ears and eyes of the place. If we see that a patient is quite well one day and there is a big change the following day, it is for us tell a trained nurse, so that a doctor can be alerted.

My aim is to give people peace at the end of their life. I’ve been told I am a good listener. If they want to open up and discuss things or even have a cry, that is fine by me. If they want to give me a cuddle, I will cuddle them. I am quite tactile and there is a warmth about the place. There are no boundaries as far as I am concerned.

There are always some people that you feel closer to – there is almost like an extra softness towards them. People often say it must be hard to lose the young ones, but I find it very upsetting when elderly people pass. Where they have been married for sixty years, that is so sad, because the person who is left is so alone.

People do open up to me. They will tell you that as a child, they were sexually abused: “I have never told anybody this before, but I really need to get this off my chest before I go, do you mind if I talk to you?” – and they let it all out. They are so relieved, it is a weight is off their shoulders.

There was a lady whose husband used to come in and visit her every day and she would go yes dear, no dear. After he left one day, she said: “I haven’t been able to stand him for years; I wish he had left me years ago…but how can I hurt him now?” You do need a sense of humour in this job.

She discusses her close involvement with a death:

We also work with families. You have to sort of weigh up – do they want me to back off or do they want me to come and sit with them? I feel I have a sixth sense for the ones that need somebody to just sit and be there or to pop into the room and say hello, are you OK? It can open the floodgates, they get very tearful.

Families are often frightened because they have not experienced a death before. You can think somebody has passed away and then there is a huge gap – minutes – and they will take another gasp. We are there, discreet – we step back but we watch for the rhythm. And we let them know when the person has passed away.

Once that happens, I say, “I am going to leave the room, I will be outside if you need me.” After about half an hour, we will go in, urge them to go for a cup of tea and say, “We are going to make them comfortable’. That may sound a funny word when somebody has died, but we would then make the person more presentable. Maybe their mouth is wide open, maybe they died in a crumpled-up position.

We go in, wipe their face, brush their hair, bring some flowers into the room, take out any medical equipment. We leave their personal things, maybe a pair of glasses, things that the family know belong to that person. They look like they are sleeping. And then we bring the family back in. They can stay for half an hour or for hours.

Her job is very fulfilling, although there is the occasional frustration:

I feel very, very humble and privileged that I can do what I do here. The patients are amazing. They are so grateful for what you are doing. People have nothing to hide when they are this unwell. If I can give them peace and comfort at the end of their life and help the families to make their passing easier – even in a tiny way – then I feel that I have done a good job.

I feel valued – that’s probably what keeps me doing this job, the appreciation and the fact that I know that I am doing a good job. The thought of sitting in a bank earning millions of pounds for somebody that couldn’t give a damn…! It feels good to know that you have done some good.

Everybody that I work with are special. We all bounce off each other, we all work well together. You need to, because if you are not feeling 100%, the others carry you – if I think one of the other staff is not having a very good day, I will go out of my way to do things. It is a bit of an unspoken thing, but you just do it.

Sometimes when we get together, there is lots of laughter and families have commented on that. They’ll say: “All of you are laughing down there, don’t you know somebody is ill?” But the actual patients will say it is lovely to hear laughter. Patients don’t want to keep hearing about cancer and dying. They say it is so nice to have a laugh. The people who come to visit ask how they are and are they in pain, but they want to talk about normal things – what is the Prime Minister up to this week?

I never know what my day is going to be like. I could have a day that’s quite slow. I could have a day where I don’t know whether I am pushing a commode or holding a tray with the afters on. I like the unpredictability. I have never not wanted to come to work. I don’t like getting up at 6.00 in the morning, but I have never not wanted to come in.

She also notes the occasional off moment:

Something will hit you out of the blue. You think you are fine – and all of a sudden you think oh my God, I am going to cry, I had better go out. It might be the patient looking at you and you just can’t do anything else for them. Or the family – you might get somebody who would stroke their mother’s hand or whisper something in her ear – you would have to be hard as nails not to feel choked.

There was one day where I took myself round the back of the hospice, sat on the grass and cried my eyes out. We didn’t have enough staff, there was staff sickness, it was the summer holidays. There was one lady who we could not get on top of her pain. She deserved better. Later, when we had a meeting, I said. “We failed that lady, she was in pain for over an hour, because nobody could get to her.” That was really frustrating, but that’s very, very rare.

And such work can have an impact on home life:

Working with dying people makes me think about living a bit more. I want to cram it all in, do all the holidays. If I had a pound for everybody that said I wish I had done more, I would be very rich. Nobody ever said I should have worked more hours, I should have stayed indoors and done my housework, I should earned loads of money. The things that come into it are people.

I think sometimes it might be easier to work in a shop because my hours would be shorter and I wouldn’t be so tired. I have three good kids, teenagers. But they need to understand that I love my job – and what's the point in me leaving just so that I can put their dinner on the table? I was there for them when they were younger, doing all those things.

I have gone home and had a good old cry. I don’t cry in front of my husband. I don’t think it is fair. He doesn’t bring his job home, I don’t bring mine. He knows what happens in here, but he doesn’t want to hear the gory details. I could sit him down and go through what I do in a day – and he would need a whiskey at the end of it. So, I have the whiskey myself.

This interview is one of 31 interviews with hospice staff from which I wrote my book Life in a Hospice: Reflections on Caring for the Dying.

My thanks to Freepik for the picture.

You know that I love to get your comments. It has been suggested that I should offer some clear prompts, but I think you are all sensible individuals and will want to respond in your own way. So please say whatever you are inspired to say. But here are prompts if they help. Have you had much to do with hospice care? Have you ever looked after someone who was dying? Does the whole process fascinate you, as it does me, or does it repel you? I look forward to hearing from you.

PS. I have decided to bring forward the timing of my posts. They have always gone out every other Wednesday at 8 pm London time. From now on, they will go out every other Wednesday at 3 pm London time, to give me more time on the same day to respond to comments.