Memorandum by the Terrence Higgins Trust
1. The Terrence Higgins Trust (THT) is the
UK's largest and longest established charity for people living
with and affected by HIV/AIDS. THT regularly consults with our
members and those who use our services. A majority of our Trustees
are elected by the membership.
2. THT and the Centre of Medical Law and
Ethics, Kings College London, produced the first widely available
Living Will in October 1992. Research was undertaken to
test the acceptability of the Living Will. This showed
that it was mainly being used by men between the ages of 30 and
40 with a diagnosis of HIV or AIDS and that it was simple to complete
and highly valued.
3. Over 20,000 copies of the Living Will
were distributed between 1992 and 1994. Currently, THT receives
80-90 requests for the Living Will each month.
4. Since the introduction of highly effective
combination drug therapy in 1996, the number of HIV related deaths
has reduced by 70 per cent and many people living with HIV now
view their condition as a long term, manageable illness. However,
HIV treatments are complex, life long and often result in severe
side effects. Over 400 people die of HIV related causes in the
UK each year. Many people living with HIV want to guarantee that
their decisions about their care at the end of their life are
5. THT supports the aims and objectives
of the Assisted Dying for the Terminally Ill Bill. The current
use of the criminal law, in particular the Suicide Act of 1961,
does not help either a terminally ill person or the health care
professionals supporting them.
6. People living with HIV take many difficult,
complex decisions about their care and treatment over many years.
The provision of a safe and regulated option of assisted dying
for competent, terminally ill adults would extend their choice
to be able to make decisions throughout their life with HIV.
7. THT believes that the Bill provides careful
safeguards, including the obligatory consideration of all the
alternatives, in particular the option of palliative care, the
provision of pain control and the revocation of decision at any
time, and will create a robust legal framework for end of life
27 August 2004