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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