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We find out how caring for and supporting people at the end of life shapes attitudes towards death.
“That it’s not quite as scary as some people think. The way we, especially at Marie Curie, deal with death and dying has come on in leaps and bounds. I think sometimes the hardest part is having that conversation, with the patient or carer, and accepting that a person is dying. Some people never accept it, and you have to understand that.”
“That I can’t do anything about a terminal illness. If someone has got a terminal illness, then I can’t change that – the diagnosis. What I can change is their experience on that journey.
There’s a massive difference between someone having a ‘good’ death and a ‘bad’ death. I think it’s really important that people can make choices, along with their families. I think wherever possible they should be able to go with those choices.
A lot of the time I find that if someone has that diagnosis, then they want to feel that they’re in control. Information is knowledge. Knowing more about resources that are out there to help you makes a big difference.”
“I think we don’t put enough emphasis on palliative care. I think secondary care sometimes forget about quality of life at the end of life and the quality of those last few weeks and months.
Some have forgotten the art of having conversations with patients and being clear about what is curative and what is palliative. Those conversations should be going on in general practice, but also in secondary care as well.”
“I’m very realistic. I mean it’d be lovely to be on a beach or something, but the chances are you’re not going to enjoy being on that beach, are you? I’d probably prefer to be at home initially. But I’m aware that it might be stressful for relatives and I think the hospice environment is a lovely environment for people to be in. It allows relatives to be relatives, not carers. I wouldn’t want to burden my family with juggling life and looking after me.”
“I’d want to die at home. I’d want to make clear my wishes about what would be done in hospital. Thankfully I’m in good health. I’m not at the stage where I’ve had to face any of these issues just yet. But I have clear views and I’ve made them known to my grown-up children and to my husband. They know what my wishes are, and under what circumstances I’d want what treatment from the perspective of palliative care. I’d be going for quality rather than quantity.”
“If you were at home and woke up at 2am and you look around and see familiar things – you could see your pictures on the walls and your stuff. Hospices are lovely places, but personally I’d prefer to die at home.”
“If somebody’s caring for someone, we’ll say to them: ‘go grab a couple of hours and we’ll come and get you if anything changes’. Because people do want to be there. There’s something about being there when somebody takes their last breath – it’s like they started this journey together and they’ll finish this journey together.”
“It’s still a taboo subject so people are frightened to talk about it. I think palliative care services have got it right. I think we all work really well together. What I don’t think works well is when someone gets a diagnosis, and they get treatment, and then they get told there’s no treatment.
They can go away thinking: ‘oh, I’m just going to go away and die’. I think there can be that crossover where they can feel a little bit abandoned sometimes. I think once they get into palliative care services, they realise it’s a speciality that’s going to take over their care and look after them well.”
“I think in some respects we’re still a little bit Victorian. But we are getting better. The younger generation are more open. For people of my mother’s generation, it wasn’t something you discussed. You left it to the doctors and nurses.
Families are more involved now in the care and beyond. Often, if I’m giving last offices to somebody, I’ll ask if the family want to be involved. And many times daughters may want to brush their mum’s hair or put some lipstick on – to feel they’re still a part of their mum’s life. Caring doesn’t stop at death.”
“Yes, but it’s not just about the end of life – I think people need to have those conversations when they’re able to. As the patient or the person who is very ill, you need to understand that your family are going to be very distressed. You need to make your views clear to not just your family but your doctor and professionals around you so everyone is clear. So your partner or whoever doesn’t feel responsible for making those decisions. Having some form of care plan written down if you can do is probably easiest. Although it is clearly difficult.”
“I think it’s important to ask people: ‘Is there anything in particular that you would like me to do for you once the moment comes?’ It might be allowing the pets on to the bed for a few minutes. I went to see a lady the other night who had six cats. They’re part of her family, and she said to me: ‘if it’s my time, I would at least like my cats to be able to say goodbye.’”
“It depends on the individual. When people are coming to the end of life, as a carer or relative you can have funny feelings – like you can wish them to die. And you feel guilty, but it’s because you don’t want to see them like that, you want it to end. I’m not saying everyone feels like that, but I think quite often people feel guilty about their feeling. I don’t think there’s anything wrong with thinking it. It’s normal.
When I’m talking to a relative, I might ask them: ‘are you wishing they would go?’ I tell them they don’t have to feel bad about that. You gauge with your patients whether to say things like that. You get a sense of their personalities.”
"It’d be at home, with my family. Hopefully, having said my goodbyes. And maybe having had a glass of wine that evening! I’d go to sleep and not wake up, that would be my ideal thing. Preferably with a short illness. I’d be in my own bed, feeling comfortable, feeling safe. Not in A&E. Keep the doctors well away from me! A nice nurse is what I’d want!”
“One that’s pain-free and comfortable. Being supported by family and friends, and being around your loved ones. And for me, being at home. It’s where many people want to be, and having that ability to make that final decision. It’s their final piece of autonomy.”
“To me, it’s when someone is pain free, comfortable, in a place where they want to be – whether at home or in a hospice. And where they can go without feeling that they have to worry about anybody, that their relatives and loved ones are supported and won’t just be dropped when the patient dies.”