End of life decisions and quality of care before death

The editorial by Ira Byock (1) commenting on the report from van den
Block et al (2) correctly says that only 22 cases of euthanasia or
physician-assisted suicide (PAS) occurred (1.3% of all 1690 non-sudden
deaths), suggesting that this means these actions ‘occur relatively
infrequently’. However, there were a further 26 cases of 'life ending
drugs without patient request'. Readers should know that this latter
category consists of doctors who answered the same question in the same
way as the doctors who are counted as having provided euthanasia or PAS,
except that in a subsequent question the doctors indicated that the
patient had not asked for euthanasia at the time.

In early Dutch reports from studies using this questionnaire (3) this
type of action was labelled 'involuntary' euthanasia, a translation from
the Dutch which had unfortunate connotations in English. As Dutch and
Belgian researchers have become more aware of this, they have changed the
label for this to 'life ending without a patient request'. These are
normally patients unable to communicate, who in some cases may earlier
have indicated a desire for a hastened death. In all of these cases the
responding doctor ticks a ‘yes’ box to the question ‘Was death caused by
the use of a drug prescribed, supplied or administered by you or a
colleague with the explicit intention of hastening the end of life (or of
enabling the patient to end his or her own life?)’.

The inclusion of these 26 cases would, then, bring the total for
'assisted dying' (ie: where doctors explicitly intended to end the
patient's life) in the Belgian study to 2.8% of the 1690. In the UK, use
of the same questionnaire items on a nationally representative sample of
doctors reporting on 2869 deaths (including sudden deaths) has produced
figures of 0.21% for euthanasia, 0.00% for PAS and 0.30% for life ending
without a patient request (4). An earlier survey using these questions, of
629 deaths in the UK occurring in 2004, produced figures (excluding sudden
deaths) of 0.17%, 0.00% and 0.36% (5).

Van den Block et al (2) also report on the proportions of deaths
where actions were taken which involved either an expectation or a partial
intention that these would contribute to a hastened death. The wordings of
the questions that produce these statistics is controversial, with some
taking the view that these lead to an overestimation of the proportion of
deaths which contain a partial intention to hasten death, by adding cases
where there is merely an expectation that the action (such as ‘saying no
to intubation’) will have this effect. Figures for the UK using re-worded
questions to avoid this conflation have resulted in much-reduced estimates
(4).

References

(1) Byock I. End of life decisions and quality of care before death.
BMJ 2009;339:b2730 doi:10.1136/bmj.b2730

(2) van den Block L, Deschepper R, Bilsen J, Bossuyt N, van Casteren
V, Deliens L. Euthanasia and other end of life decisions and care
provided in final three months of life: nationwide retrospective study in
Belgium. BMJ 2009;339:b2772 doi:10.1136/bmj.b2772

(3) van der Maas PJ, Delden JJM, Pijnenborg L, Looman CWN.
Euthanasia and other medical decisions concerning the end of life. Lancet
1991; 338:669 674.

(4) Seale C. End-of-life decisions in the UK involving medical
practitioners. Palliat. Med. 2009;23:198-204

(5) Seale C. National survey of end-of-life decisions made by UK
medical practitioners. Palliat. Med. 2006;20:3-10.

Competing interests:
None declared