End of life decisions and quality of care before death
BMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b2730 (Published 30 July 2009) Cite this as: BMJ 2009;339:b2730All rapid responses
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For all Dr Byock's nuanced reading of the evidence there is something
being ignored and I would contend it is rather important. All the data in
the world will not overturn the immemorial duty of doctors in particular:
I will neither give a deadly drug to anybody if asked for it, nor
will I make a suggestion to this effect.[1]
and citizens in general to avoid killing, being complicit in killing
or encouraging or facilitating suicide as a social ill.
Whilst I am an enthusiast for evidence-based medicine, the notion of
evidence-based patient elimination goes too far.
[1] Edelstein, Ludwig; Owsei Temkin, C. Lilian Temkin (1987). Owsei
Temkin, C. Lilian Temkin. ed. Ancient Medicine. Johns Hopkins University
Press. pp. 6
Competing interests:
None declared
Competing interests: No competing interests
Van den Block et al (1) and Byock (2) in his editorial neatly
highlight the filial relationship between palliative care and assisted
dying. Byock, in quoting the WHO principle that palliative care does not
hasten death makes it clear that assisted dying is not part of palliative
care. But Van den Block et al emphasise that in the USA and Belgium
palliative care and physician assisted suicide can effectively co-exist
and Byock does not dispute this.
I would submit that not only can the two philosophies of palliative
care and assisted dying co-exist, but they are in fact mutually
interdependent within the context of end of life care. On the one hand, it
is increasingly acknowledged that end of life care should be comprehensive
and that palliative care should be holistic - implying that all rational
options should be made available to the dying patient. This would have to
include, at the patient’s request, onward referral from palliative care to
a service providing physician assisted dying when none of the palliative
interventions possible adequately address the patient’s physical,
psychological, social and spiritual needs. On the other hand, it would be
unthinkable that a patient would opt for suicide because palliative care
service provision was inadequate. Consequently, if comprehensive end of
life care is to be provided, logically it must incorporate both an
exemplary palliative care service alongside a new, filial discipline of
physician assisted dying.
A similar balance must be struck politically between legislating for
the provision of assisted dying (which is not without significant risk)
and regulating it strictly. The key here is accessibility. The current
paradox for UK citizens is that it is the very difficulty currently
inherent in accessing assisted suicide that necessitates the involvement
of caring relatives in potentially illegal activity. Dying people may be
very vulnerable and deserve the best protection from abuse that the law
can give them. It is to be hoped that the legal interpretative guidelines
to be set down by the Director of Public Prosecutions (3) result in
regulation, which is in fact quite strict. But in tandem with this,
straightforward access to assisted dying in appropriate circumstances
facilitated by independent, well regulated professionals would restore
autonomy to the dying patient and protect their genuinely caring relatives
from fickle legal sanction.
References
1. 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.
2. Byock I. End of life decisions and quality of care before death.
BMJ 2009;339:b2730 doi:10.1136/bmj.b2730
3. BMJ 2009;339:b3131
Competing interests:
None declared
Competing interests: No competing interests
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
Competing interests: No competing interests
Empirical data on relationship palliative care and hastening of death (Response to editorial of Dr. Byock)
In response to the critical comments of Dr. Byock concerning the
interpretation of the data of our study recently published in the British
Medical Journal (1) we would like to comment on a number of issues raised.
Dr. Byock states that the discussion is focussed too much on
practices that hardly ever occur at the end of life (e.g. 2% of the
patients receiving palliative care died following euthanasia or physician-
assisted suicide) while more frequently occurring decisions receive too
little attention. We agree that euthanasia or physician-assisted suicide
occur relatively infrequently, especially compared with other possibly
life-shortening end-of-life decisions such as intensified alleviation of
symptoms or non-treatment decisions. However, the intense societal, legal
and ethical debate surrounding physician-assisted death underlines its
importance and relevance. Hence, these decisions deserve to be studied
empirically and reported in detail, despite of their relative infrequency.
As was also pointed out by Dr. van der Heide and Dr. Rietjens in response
to Dr. Byock’s editorial (17 August 2009) the relationship between end-of-
life decision-making and high use of palliative care is not surprising,
but the fact that palliative care does not prevent physicians and patients
from deciding to hasten death is an important finding of our study.
Additionally, it should be noted that several other important end-of-
life decisions, including decisions that have evoked a considerable amount
of debate such as life-ending drug use without explicit request from the
patient and the relatively often occurring use of continuous deep sedation
(or palliative sedation), or the decisions to forgo life-prolonging
treatment with explicit life-shortening intention, are studied in our
research. The data show that several of these far-reaching decisions are
made relatively often among patients receiving palliative care compared
with patients not receiving palliative care. Even though some decisions
are not made frequently in palliative care settings overall, they are
relatively frequent in comparison with patients not using palliative care.
Another criticism concerned the conceptual framework used in our
study. However, this framework has been validated and used extensively in
international research for many years now (2-4). It focuses on end-of-life
decisions with a possible or certain life-shortening effect as
judged/intended by the physician and does not study other decisions such
as intensive management of symptoms not hastening death. Contrary to Dr.
Byock’s statement, it does distinguish specifically between distinct
actions and intentions such as receiving lethal drugs with explicit life-
shortening intention, non-treatment decisions taking into account or
explicitly intending hastening of death, and intensified symptom
alleviation taking into account or co-intending hastening of death. This
framework and all definitions of concepts used in the tables are
thoroughly described in the method section of our paper.
Finally, referring to the official statements from the European
Association of Palliative Care (“euthanasia is not part of the
responsibility of palliative care”) and to the WHO definition of
palliative care (“palliative care should neither hasten nor postpone
death”) Dr. Byock writes that “principals do not depend on empirical
data”. While we understand this line of reasoning, we only hope that our
paper can make a valuable contribution to the worldwide debate concerning
the relationship between palliative care and end-of-life decision-making
by providing empirical data on a subject that has foremost been dominated
by emotional and unproven arguments and principal feelings. While many
people within and outside palliative care believe that euthanasia requests
follow a lack of access to palliative care and that delivery of palliative
care will resolve any request of euthanasia, our data showed that
euthanasia or physician-assisted suicide was not disproportionately chosen
by or for patients who do not access palliative care provision. Instead of
being each others’ opposites, they commonly coexisted. We believe that
this is an important message for policy makers and palliative care
associations that should be taken into account when discussing the future
role of palliative care.
On behalf of all co-authors (1)
(1) 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.
British Medical Journal 2009;339:b2772.
(2) van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E,
et al. End-of-life decision-making in six European countries: descriptive
study. Lancet 2003 Aug 2;362(9381):345-50.
(3) van der Maas PJ, van der Wal G, Haverkate I, de Graaff CL, Kester
JG, Onwuteaka-Philipsen BD, et al. Euthanasia, physician-assisted suicide,
and other medical practices involving the end of life in the Netherlands,
1990-1995. N Engl J Med 1996 Nov 28;335(22):1699-705.
(4) van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM,
van Delden JJ, Hanssen-de Wolf JE, et al. End-of-life practices in the
Netherlands under the Euthanasia Act. N Engl J Med 2007 May
10;356(19):1957-65.
Competing interests:
None declared
Competing interests: No competing interests