Recent reports have highlighted examples of very poor care for people who are dying.
Poor communication was often the problem.
People in the final stages of life had not always understood that they were dying.
In other instances, people didn't know the person they were caring for was
going to die.
More generally, individuals didn't always understand the words being used.
People often hear the terms 'palliative care' or 'end of life care'
for the first time when someone they know is dying or won't get better.
They might hear the words used by medical or care professionals.
Or they might see the terms written in a professional context such as on signs,
in leaflets or guides, in the media, or perhaps in online information.
In fact, they may hear a range of words and terms that they simply don't understand.
And all this when they might be feeling sad, scared about the future.
Tired, frustrated, angry about what has happened,
overwhelmed, in the dark about what to expect.
We asked over 1,000 people what they thought and felt about these two terms:
'Palliative Care' and 'End of Life'.
We collected views from both the public and professionals in a variety of ways
- and they said:
"End of life care", I mean, I suppose that sounds more terminal whereas with
"palliative care" I suppose that gives a degree of hope for family and loved ones.
I've not got any idea what it means.
I think "end of life care" is better because it's more honest.
I think "end of life care" is easier for people to understand.
Palliative care for me is looking after people in their last weeks, months.
To me it's not about prolonging life but just making the end of life more comfortable.
Well palliative care really is the support and care given to me
where I'm a terminal patient.
Palliative care has negative connotations with cancer with hospices.
In a sense it doesn't mean anything because I know the word but I've never actually
been instructed or discovered what it means.
The findings illustrate the confusion, the impact and the range of understanding
and feelings towards the two phrases.
Social care and health staff need to communicate in a caring way to people who
are dying and their families, making sure that whatever terms or words they use that
people are clear about what's being said.
So yes I think communication naturally is absolutely vital.
People still want to talk about "passing over" or "when I'm not here" or anything that
doesn't involve the word "death".
I think that it's our job as people whether you're a professional or a non-professional
to be able to speak about the end of life whether it's using "end of life" words
or "palliative care".
So I think "end of life" is a bit frightening for somebody I think most individuals that
we might come across, that's quite frightening they're going to think "well, this is so near"
whereas "palliative" I think is quite a gentle way.
But on the other hand I also think it can be very confusing.
I've met quite a number of people who come along, they're quite upbeat "oh, I've been told,
you know, palliative" and then I can tell from what they're saying actually they don't know
what is really the situation with their health.
So I think it needs a bit of, more explanation than just a word.