Clash of wills.

Liz Sayce, director of policy for the Disability Rights
Commission. 

“The issues this case raises are complex. The arguments have
become focused on negative rights: the right to refuse treatment,
the right to die. At the Disability Rights Commission we believe
this should be counterbalanced by the right to good palliative
care, independent living and a core set of services to enable
people to live their lives to the full.

This is not about imposing a decision on people but opening doors
so decisions are made from a real range of options. The system
should encourage creative thinking to make a person’s life more
satisfying.

We need to look at why people feel they want to die and see if the
issues can be resolved. For example, a man who could not
communicate with friends and family felt he wanted to die until a
software company offered specialised IT equipment that enabled him
to communicate.

Research shows many people who say they want to die have also said
they don’t want to be a burden on family and friends. With the
proper support for the family these people would not be, or feel, a
burden. Others are unhappy with choices about where they can live
and might say they would rather die than go into a home, for
example. This could be resolved by better facilities and full-time
support at home.

However, a free choice cannot be made if there is an absence of
services and opportunities. Social care agencies must provide such
opportunities to give people real choices about their lives.

There are issues of age and levels of incapacity affecting
decision-making. If an 18-year-old girl with anorexia hated her
body so much she wanted to die it would be appropriate to
investigate what could be done to help her. The same should be true
even if someone is terminally ill and nearing the end of their
life.

Living wills are an excellent way of extending autonomous
decision-making to a time when people can’t make them on their own.
And making autonomous decisions is something we wholeheartedly
support in this organisation. They are particularly valuable when
people suffer from episodic conditions such as psychosis.

However, a living will often predicts how someone might feel in
circumstances unfamiliar to them. Research has demonstrated how
expectations of life change at different stages and people’s
experience of illness alters what they feel is acceptable or
unbearable.

Living wills must therefore come with safeguards. First, a medical
practitioner should be present at the time the treatment is
withdrawn. I am concerned social care staff might not be qualified
to decide if the exact circumstances stipulated in the will were in
place. Likewise an advocate, chosen by the patient, should be
involved in taking the final decision, so someone is there who is
alert to the possibility that the person who made the will might
change his or her mind.

People need unbiased information on which to base their decisions
from those who have experience of their particular situation. None
of us can predict how we will feel and people should not make a
decision based on a fear of the unknown.

If the choice is then to die, that is the individual’s right and
should be respected. However the positive rights should be
enshrined in legislation before the negative ones become the
precedent.

The instinctive reaction to someone who wants to die is to reach
out to them to see if there is a way of finding some enjoyment or
something of value to live for. This, not the right to die, should
be the first response.”

Deborah Annetts, chief executive of the Voluntary
Euthanasia Society. 

“We welcome Durham Council’s decision regarding Mrs C as an
extension to people’s rights to autonomy over their own lives. Our
organisation is about supporting and promoting patients’ personal
decisions and helping them reclaim control of their bodies. Once
people have full understanding of their medical situation they are
able to make an informed decision about what they want to happen to
them, and this should be respected.

People know their own illness better than any of us: they live with
the consequences, they know how it affects their bodies and how
they feel about its development, and they are the ones best placed
to make decisions about what they want as it progresses.

Mrs C has been living with her condition for years and it is
therefore appropriate for her to give instructions about what she
wants to happen and for this to be complied with. It is the duty of
care workers to respect the choices of the people for whom they
work and to help them, not dictate what should happen.

When people go into hospital for planned surgery they sign a
consent form. Without consent it would be considered in law an
assault to operate. Similarly, if you fail to comply with a
patient’s express wishes you can be sued for trespass to the body
or charged with assault: someone’s incapacity does not mean their
decisions can be ignored. We hope this practice can now be extended
into social care settings, where we know individuals are having
their wishes disregarded on a daily basis.

It may be hard for care workers not to intervene to save a life but
the discomfort of a carer is not paramount, nor is it a reason to
assault a patient. It is about treating people as adults and
respecting their wishes, which is something most care workers would
want to do. Councils must ensure they have proper guidelines in
place and training for their staff to help them understand the
issues.

It is important to be clear about the difference between assisted
dying and refusing treatment. The legal and moral distinction is in
the issue of personal responsibility. If a patient wants assistance
to die someone else must take positive action to end a life, which
is illegal. Refusing treatment, however, is about an individual
taking responsibility for their own body, making a decision in the
full knowledge of the consequences of that decision.

We tell people to think carefully before making a living will. Mrs
C did not take her decision lightly. It was based on how she felt
about her deteriorating quality of life and the painful and
intrusive treatment involved in preventing her from choking. To
disregard her decision would be an abuse.

British Medical Association guidelines say an individual’s
treatment decision should be respected and social care agencies
should make similar guidelines for their staff. There is no
obligation under UK law for doctors to rescue an individual from
their decision.

We are glad Durham came to this decision to support Mrs C’s right
to determine her own treatment. It will give people more control
over their own bodies and means staff could now be in serious
trouble for disregarding people’s wishes.

This case is all about respect for a human being. We are all
different in the choices we make; it is what makes us unique, even
when it comes to making decisions about how to end our own
lives.”