A palliative care nurse on death plans, breaking taboos and shining a light on the end of life

Palliative care nurse Kate Ward | death plans

Kate Ward is a palliative care nurse specialist. She talks to us about palliative care, visiting Poppy’s with her colleagues and why deciding what your death should look like is too important to leave to other people.

Can you give some background about the work you do?

I’ve been in palliative care for a long time and it’s changed a lot over the years. Previously, it was very focused on cancer patients. They had their cancer treatment and when that treatment is no longer working, we would become involved towards the very end of their lives.

Now we tend to get involved much earlier, which is brilliant. We’re also looking after people with life-limiting diseases, like heart failure or respiratory diseases or neurological things like dementia.

Getting involved at the beginning of a life-limiting disease is really helpful. Not everyone wants to do it, but it’s a great place to be able to start to plan what they want for the future — and that would include their death plan, or ‘advance care plan.’

What kind of questions and concerns do people tend to have when they speak with you?

Quite often people want to know what death looks like. They’ve seen it on telly and they’re terrified that they’re suddenly going to be in agony. People do tend to want to die at home but they’re worried what that’s going to be like and who’s going to be around to support them.

People are reassured by me talking openly about what to expect and showing there’s no great mystery. I tell them that, hopefully, it’s not going to be dramatic and there will be a slow decline.

Although most people say they want to die at home, the majority of us still die in hospital. Why do you think that is?

Sometimes it’s because nobody’s had a discussion [about end of life care] with a patient. It can also be that things haven’t been well planned out. It might be that everyone wants them to die at home but then there’s a crisis, the family panics, and the person gets whisked off to hospital and doesn’t come home. So we try and organise things as much as we can, as early as we can.

The other thing is that sometimes, even with the best will in the world, it’s just really difficult. Maybe a wife is left in the middle of the night with her husband in pain. I’ve said to people, ‘let’s get them into the hospice now,’ so that takes the pressure away.

People often feel as though dying in hospital is a failure. But for people with things like heart failure or COPD [chronic obstructive pulmonary disease], their deterioration can be acute. They might be very breathless and that’s frightening. For some people in those situations, it may just be too much and going to hospital shouldn’t feel like it’s a failure.

In palliative care in general, do you think that death is something that gets spoken about a lot?

No, I think that there’s still a taboo because people are frightened of it — and that includes professionals who come across death more often than the general public.

I recently had a meeting with a young GP who seemed to know her patients very well. She was talking about a 95-year-old gentleman who’d just been in hospital. I asked her whether she’d spoken about his wishes for the end of his life. She was shocked and said, ‘oh no, I’m not talking to him about that, that too would be too scary.’

I thought, really? He’s 95, most of his mates will have died, his wife has died, don’t tell me he hasn’t thought about death. It’s just there in the background hovering.

People in that situation actually quite often want to talk about it. But the consultant won’t talk about death and sometimes the family is trying to protect them too. Saying things out loud makes death feel more real and that can be very sad. But it’s helpful to acknowledge that it is sad, and try to say what you want to say.

Death is going to happen to all of us and the best thing to do is be open about it and the things you’re worried about. Deciding what your death should look like is too important to leave to other people.

Why we need to talk about death

Why did you decide to bring your team to visit Poppy’s?

I think some people in my field have no idea what happens to someone after they die. It’s all too horrid and scary. Some people I’ve tried to bring to Poppy’s have been nervous about it. But when they’ve actually been, they found it completely refreshing and lovely and reassuring.

We’re used to people rocking up at funeral directors and being told, ‘you can have this £4,000 package, take it or leave it.’ So there’s something about how normal, open and warm Poppy’s is that’s really lovely. Just the respect that people are shown there.

It also helped my team talk more confidently about what happens after someone dies. We can go over the pros and cons of different options with patients. Whereas before, I think we wouldn’t have been able to talk about it in the same way.

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Is there anything that you’d like to see change in the hospice sector about how death is spoken about and dealt with?

It’s an ongoing upwards battle, really. There are some district nurses who find looking after palliative care patients frightening, but there are some who really love it. There just need to be more of us.

You work with people so intimately and are able to make the end of their life as good as it can be. It’s really gratifying and rewarding work.

Read more interviews on Talking Death — hear from therapist Julia Samuel or palliative care doctor Ruth Ting.

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