It's just something we don't like to think about.
No-one talks about it, no-one really wants to address it.
My husband's very much: "Don't want to talk about it. Nope. You're fine."
I don't want to talk about my death too much with them
because I don't want to make them feel more unhappy.
It's even more difficult if you're faced
with somebody that you love
who's got a diagnosis
and then you have to start this conversation.
You don't have the language because you’ve never talked about it.
You don't have the familiarity, you don't know how to open the question.
In our society we're often encouraged
to plan for our lives.
Planning for our births,
planning for different operations if they need to happen,
and also, as an extension of that,
starting to plan for our end-of-life care.
And that's increasingly important,
because more of us have a period where we are dying
rather than just suddenly dead.
So there's a chance to think about what that period will look like.
When those questions are looking back at you
and someone is saying, "What do you want?"
It makes you really sit down and think about
all the places that you might want to have your ashes scattered,
or whether you want to die in hospital,
or whether you want to come home and die,
what are you going to do with your animals?
Who's going to look after your husband when you've gone?
Families might make the assumption
that they will be able to speak on behalf of their loved one,
and it's not an automatic thing that they can do that.
It's important that they legally nominate a family member
by making them a lasting power of attorney for health and welfare.
It's a comfort knowing that my parents have power of attorney
and they can make those decisions when I'm not able to
rather than a doctor or somebody who doesn't know me very well.
Just nudging doctors
in the right direction, so actually,
"Do this, but don't do any more"
or, "This is not what I would have wanted" is incredibly helpful.
Legally we can't demand certain treatments,
but we can definitely refuse treatments.
So people can say they don't want to be resuscitated,
or they don't want to have artificial nutrition.
I think a funeral plan is extremely helpful.
Carl had made one, my husband, before he died.
So we did know what he wanted in his funeral
and what he didn't want.
That kind of practical thing was such a comfort to the family.
Allow them to grieve for you,
instead of having to worry about the 'what ifs'.
"What if we've done this wrong?"
We don't turn up and say: "Let's talk about death."
Or: "Tell me what you want if I tell you that you're dying."
You sent me your Advance Care Plan booklet
and I've filled that in up to a point.
Although when it came to the, you know,
"Do you want your window open or shut? Or your light on?
Or what about your hygiene?"
And I thought: "No - I can't even think about that."
But it is simply a case of getting things together
so that it's easy for my family.
By documenting this information now
you are at the centre and we, as professionals, and your close ones
and family, will do the best we can to make sure you have the care
and the preferences you want.
It's really important that you tell your GP or your healthcare provider
what your preferences are if they relate to medical options.
It's important to let your friends and family know
where they can find that document
if it's in a particular part of your house.
Disabled young people don't necessarily want to be focusing
on more planning
which is around their illness
or their disability.
Personally for me I feel like I've spent a lot of time
negotiating my health, negotiating the support that I receive,
the care that I receive, my diagnoses,
and so I want to spend any extra time or extra energy that I have
really living, and making sure
that I'm doing the things which I think are important.
Within healthcare these days, there's an expectation,
both from healthcare professionals and patients,
that people can have a say about what's important to them.
However that can put a lot of pressure on people
to make sense of quite a vast array of information
and at a time when they actually might want to defer
the decision making to someone else.
If we have to, and you're not able to tell us what you want,
we will do what we think is best for you from what we know.
It's not a yes, you've got a plan or no, you haven't.
It's more of a kind of evolution of thinking.
And you can revisit them and change them as your life is progressing
or as your values are changing.
It's a true gift of love because you're taking away that burden.
Put your wishes down, file away, and forget about it.
Focus on the important bits of living and getting on with life.
We insure our house, we insure our cars,
we insure our pets.
Why are we not insuring ourselves?
Nobody's going to say, "Well Adil didn't say what he wanted".
Because I did and it's there on paper.