you are ill, you can usually make your own decisions based on discussing
treatment options with your health care team. But if you develop a
severe mental illness or suffer serious brain damage (e.g. from a car
accident or stroke) the medical team will make the decisions for you.
Such decisions may take little account of what you would have wanted in
In 2007 a new Mental Capacity Act came
into force. The Act is designed to protect people who ‘lack capacity’
(i.e. are judged unable to make decisions for themselves). It states
that any treatment should take into account what an individual might
have wanted. The Act also allows anyone to make legally binding 'Advance
Decisions'- statements setting out any refusal of treatments in given
situations. You do NOT need a lawyer for this.
My sister Polly championed the rights
that are enshrined in the Mental Capacity Act. Indeed, she helped others
to write Advance Decisions. Ironically, however, she never got around to
writing one herself. She suffered very severe brain injuries in a car
accident on 30 March 2009 and has been kept alive artificially since
then in a coma, vegetative state, minimally conscious state and now
conscious with profound multiple neurological and physical disabilities.
Because she lacks capacity, she is unable now make her own decisions
about treatment. We were shocked to discover that ‘next of kin’ have no
automatic legal rights to make decisions about her care: all decisions
are the responsibility of the clinical team treating her.
Please consider taking action now to ensure that your health care
choices will be respected. You could write an Advance Decision.
Alternatively (or in addition) you can appoint someone to represent you
by setting up a Lasting Power of Attorney now. Visit the sites below for
step-by-step, guides of what to do.
Info about advance decisions; sample advance decision forms
Arrangements for Yourself’
appointing someone to represent you
attaching a copy of my own Advance Decision. This is almost identical to
the one I have signed and placed on my medical records: as you can see,
I have removed the names of family members and my GP, my home address
and few other personal details. The decisions I have made might offer a
useful starting point for thinking about the decisions you might want to
make. Note however that these are my own personal decisions and would
not be right for everyone - in particular I have refused a broad range
of treatments from the moment I lack capacity, some of which you might
prefer to accept. Please feel free to get in touch if you have any
questions or observations: firstname.lastname@example.org