Empirical data on end-of-life decision making practices
Dear Editor
Van den Block and colleagues’ paper about end of life decision making
and end of life care provides important data to support the debate about
physicians’ role in death and dying.(1) Their finding that end-of-life
decision making seems to be associated with a high use of palliative care
is not surprising, because a protracted dying process with much suffering
may be expected to result in both a high use of palliative care and a high
frequency of end-of-life decisions, especially for assertive patients with
clear preferences concerning the end stage of their lives. The authors’
hypothesis that palliative care and end-of-life decision making seem to be
mutually reinforcing remains to be proven. More importantly, the study’s
results suggest that palliative care is not able to prevent physicians and
patients from making medical decisions that hasten death. This may be due
to insufficient quality, that should be further improved, but it may also
be indicative of principal limitations of palliative care, that apparently
cannot address all suffering at the end of life.
The accompanying editorial of Ira Byock does not fully reflect the
study’s value.(2) Byock states that ‘several categories used in this
survey confound importantly distinct actions and intentions’. However, the
authors use a classification system that has substantially contributed to
clarifying the debate about end-of-life decision making, by making a clear
distinction between refraining from life-prolonging treatment (non-
treatment decisions), alleviating symptoms where hastening of death was an
expected or co-intended effect but not the main goal of the act, and
explicit and active ending of life, as in euthanasia, physician assisted
suicide, or ending of life without an explicit patient request.(3)
Further, Byock questions the study’s significance by stating that
‘principles do not depend on empirical data’. Obviously, principled
arguments in favour of or against doctors’ involvement in acts that hasten
death cannot be supported or disputed by empirical data. However, debates
about the acceptability of end-of-life decision making practices often
concern non-principled arguments, such as the slippery slope argument and
the argument that high-quality palliative care takes away the need for
hastening death. Studies like the one presented by Van den Block and
colleagues provide valuable support for that part of the debate.
Finally, Byock states that proponents of legalising euthanasia and
physician assisted suicide and ‘right to life’ advocates share ‘a deep
distrust of doctors and the institutions in which they practice’, which
gives palliative medicine good reasons to reaffirm the principle of
neither hastening nor prolonging death. This claim may be true for some
countries, but cannot be universally upheld. On the contrary, the system
that legally allows euthanasia and physician assisted suicide in the
Netherlands is based upon a deep trust in doctors, and rightly so, as is
proven by the regular monitoring of their actions.(3,4)
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 the last 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. Let
the data speak for themselves. BMJ 2009;339:b2730.
3. Van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van
Delden JJM, Hanssen-de Wolf JE, Janssen AGJM, Pasman HRW, Rietjens JAC,
Prins CJM, Deerenberg IM, Gevers JKM, van der Maas PJ, van der Wal G. End-
of-life practices in the Netherlands under the Euthanasia Act. N Engl J
Med 2007;356:1957-65.
4. Regionale toetsingscommissies euthanasie. Jaarverslag 2008. (Annual
report 2008 of the euthanasia review committees)
Competing interests:
None declared
Competing interests:
No competing interests
17 August 2009
Agnes van der Heide
associate professor
Judith A.C. Rietjens
Dept of Public Health, Erasmus MC, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands
Rapid Response:
Empirical data on end-of-life decision making practices
Dear Editor
Van den Block and colleagues’ paper about end of life decision making
and end of life care provides important data to support the debate about
physicians’ role in death and dying.(1) Their finding that end-of-life
decision making seems to be associated with a high use of palliative care
is not surprising, because a protracted dying process with much suffering
may be expected to result in both a high use of palliative care and a high
frequency of end-of-life decisions, especially for assertive patients with
clear preferences concerning the end stage of their lives. The authors’
hypothesis that palliative care and end-of-life decision making seem to be
mutually reinforcing remains to be proven. More importantly, the study’s
results suggest that palliative care is not able to prevent physicians and
patients from making medical decisions that hasten death. This may be due
to insufficient quality, that should be further improved, but it may also
be indicative of principal limitations of palliative care, that apparently
cannot address all suffering at the end of life.
The accompanying editorial of Ira Byock does not fully reflect the
study’s value.(2) Byock states that ‘several categories used in this
survey confound importantly distinct actions and intentions’. However, the
authors use a classification system that has substantially contributed to
clarifying the debate about end-of-life decision making, by making a clear
distinction between refraining from life-prolonging treatment (non-
treatment decisions), alleviating symptoms where hastening of death was an
expected or co-intended effect but not the main goal of the act, and
explicit and active ending of life, as in euthanasia, physician assisted
suicide, or ending of life without an explicit patient request.(3)
Further, Byock questions the study’s significance by stating that
‘principles do not depend on empirical data’. Obviously, principled
arguments in favour of or against doctors’ involvement in acts that hasten
death cannot be supported or disputed by empirical data. However, debates
about the acceptability of end-of-life decision making practices often
concern non-principled arguments, such as the slippery slope argument and
the argument that high-quality palliative care takes away the need for
hastening death. Studies like the one presented by Van den Block and
colleagues provide valuable support for that part of the debate.
Finally, Byock states that proponents of legalising euthanasia and
physician assisted suicide and ‘right to life’ advocates share ‘a deep
distrust of doctors and the institutions in which they practice’, which
gives palliative medicine good reasons to reaffirm the principle of
neither hastening nor prolonging death. This claim may be true for some
countries, but cannot be universally upheld. On the contrary, the system
that legally allows euthanasia and physician assisted suicide in the
Netherlands is based upon a deep trust in doctors, and rightly so, as is
proven by the regular monitoring of their actions.(3,4)
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 the last 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. Let
the data speak for themselves. BMJ 2009;339:b2730.
3. Van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van
Delden JJM, Hanssen-de Wolf JE, Janssen AGJM, Pasman HRW, Rietjens JAC,
Prins CJM, Deerenberg IM, Gevers JKM, van der Maas PJ, van der Wal G. End-
of-life practices in the Netherlands under the Euthanasia Act. N Engl J
Med 2007;356:1957-65.
4. Regionale toetsingscommissies euthanasie. Jaarverslag 2008. (Annual
report 2008 of the euthanasia review committees)
Competing interests:
None declared
Competing interests: No competing interests