Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence

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 respected.

  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 decision making.

27 August 2004

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