The Simon Heng column

Sometimes, when people meet me for the first time, I get the
response “I don’t know how you manage to keep going. If I couldn’t
take care of myself, I’d kill myself”. This is a visceral response:
when they see how disabled people actually live, people usually
change their minds. When faced with the reality of their own
disability, people do find some way of constructing a new life for
themselves, eventually. But I think that most people suffer
post-traumatic stress when they become disabled.

With the passing of the Mental Incapacity Bill last month and
the High Court judgment on a local authority (through its
vulnerable adults protection procedure) applying to prevent a
terminally ill woman from getting an assisted suicide, the legal
capacity to quicken the end of one’s life because of illness or
disability has come closer to being a reality.

The new legislation merely recognises that people are often de
facto assisted to die, because they would have an unacceptably poor
quality of life through pain, distress or incapacity: doctors and
carers are constantly making life and death decisions about
treatment and care, for people who can’t communicate their wishes
at the time. The Mental Incapacity Act puts the decision-making
firmly where that decision should belong – with the individual.

I know that there is a strong possibility that my health will
deteriorate earlier than most people’s, and that I’ll have a real
choice whether I want to live with increasing pain and distress. At
the moment, I have no thoughts about ending it all; I have worked
too hard to survive and to have a reasonable quality of life. But I
don’t pretend to speak for everyone in my situation.

But where does this leave local authorities, with a duty of care
for vulnerable individuals? We need to ensure that an individual
isn’t being pressurised into a decision because they are a “burden”
on their family. On the other hand, how do you decide whether
someone’s decision to hasten the end is a reasonable one, or
an emotional reaction which might change?