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

Memorandum by the Prince Leopold Institute of Tropical Medicine

  1.  With this memorandum we would like to submit evidence-based information to the Select Committee on the Assisted Dying for the Terminally Ill Bill.

  The information derives from a study conducted in 11 Western European countries (including the UK) on the perspective of persons living with HIV (PLWH) in Europe on the issue of euthanasia.

  This international study was co-ordinated at the Institute of Tropical Medicine in Antwerp (Belgium), one of the leading academic institutions in Europe in HIV/Aids-related medical and social research, with a strong societal mission and impact.

  2.  The above-mentioned study was carried out within the framework of EUROSUPPORT, a European research initiative and support network for PLWH, funded by the European Commission (SANCO/Public Health). EUROSUPPORT aims at gaining scientific insight into newly emerging and rapidly changing HIV-related problems by using a multidisciplinary approach. The European Commission has continuously financially supported this initiative since 1996, now being in its fourth phase.

  The research and support network includes HIV-treatment centres and patient organisations in 11 European member states, carrying out targeted empirical research on the needs of PLWH.

  3.  The study on euthanasia was conducted as an essential part of the first EUROSUPPORT project (1996-98). The study involved a cross-sectional data collection on issues relevant to the quality of lives of PLWH. It is important to mention that at that point in time, effective HIV treatment such as antiretroviral combination therapy had just started to become available on a large scale in Western European countries.

  4.  In what is to follow we summarise the main findings from this study:

    —    The total number of respondents was 1,341 and 194 self-reported questionnaire were from the UK. Patients from the UK, the Netherlands, and Belgium most strongly supported assisted dying (euthanasia) legislation: In the UK 77 per cent of the respondents supported legislation when the physician administered the medication and 61 per cent when the patient self-administered the medication.

    —    61 per cent of UK respondents also viewed that assisted dying legislation would severely decrease their anxiety in relation to their disease and the uncertainty of their personal future (this was the highest percentage following the Netherlands).

  However, only 16 per cent of UK respondents had discussed assisted dying with their physicians, compared to 45 per cent of respondents in the Netherlands. In the UK 60 per cent of respondents had discussed this with "someone else" (other than the physician), compared with 82 per cent of respondents in the Netherlands.

  5.  In what is to follow we summarise the main conclusions from the study:

    —    Despite the methodological limitations of the study, our findings indicate that across Europe and in the UK, a considerable interest does exist in assisted dying (euthanasia), irrespective of the fact of whether the patients involved are actually prepared to pursue this avenue for themselves.

    —  Due to the availability of more effective and better tolerated HIV-treatments, the issue of euthanasia may become less relevant in the future for PLWH. However, it must be borne in mind that there are an increasing number of HIV-infected patients who cannot be treated with these therapies, due to development of resistance or other side effects. Thus, as for any other patient suffering from a chronic disease that is treatable but not curable, the option of patient assisted dying will remain extremely relevant. For patients with an incurable disease who choose not to continue with palliative care but who continue to suffer, assisted dying should be an available option.

  6.  Reference of the referred article:

  Andraghetti R, Foran S, Colebunders R, Tomlinson D, Vyras P, Borleffs CJ, Fleerackers Y, Schrooten W, Borchert M. (2001). Euthanasia: from the perspective of HIV infected persons in Europe. HIV Med, 2001; 2(1): 3-10.

19 July 2004

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