Ethos Perspectives
The Policy Implications of Dying:
End of Life Care
Introduction
End-of-life care—which refers
to the care needed during the deterioration of an illness
in the months or years preceding death—has traditionally
been a peripheral issue in healthcare. Around the world, healthcare
institutions have always focused on delivering cost-effective
curative treatment. Ironically, it is medical advance that
has generated the debate over the value of end-of-life care,
the quality of "death" and the relationship between
the two. Modern medicine has not only extended overall life
expectancy but also made it possible to sustain the sick for
longer, inadvertently prolonging their period of disability
and pain. At the same time, the growing nuclearisation of
families and the declining proportion of younger adults in
an ageing population mean that families will find it an increasing
burden to care for their disabled or ill family members.
With this, the need for palliative care—providing symptomatic
relief and emotional, spiritual and social support for the
dying—has become more important than before. While legal,
clinical and ethical guidelines such as the Advanced Medical
Directive (AMD) and laws on euthanasia help to address some
of the issues around dying, society and healthcare systems
remain unprepared and unable to provide adequate holistic,
effective and compassionate end-of-life care.
Without a doubt, end-of-life care is fraught with complexity
and controversy. For example, there is continuing debate whether
it devalues life by abandoning curative efforts too early,
or is more respectful of life as it seeks to give the dying
greater dignity and quality of life. While most respect individual
choice and
one’s right to die with dignity, interpretations—whether
individual, societal, cultural, religious or clinical—of
what constitutes "quality of life" in one’s
dying years vary greatly. There is also a lingering perception
that palliative care can result in substandard medical treatment,
or is a way to end the burden of caregivers.
To what extent governments should advocate and regulate end-of-life
care? While it may ease the financial, physical and emotional
burden of the dying and their families tremendously, how can
these benefits be measured tangibly? Should the government
subsidise end-of-life care if the end-point is certain death?
This issue of Ethos Perspectives aims to highlight the complexities
and dilemmas that surround end-of-life care and the assumptions
behind it.
Reference 1: "The Solid Facts:
Palliative Care" edited by Elizabeth Davies and Irene
J. Higginson
This overview presents the best available evidence
on the case for palliative care, the emerging trends, current
gaps, and the policy implications of each. The review notes
that with advances in public health and life expectancy, people
in developed countries have become unfamiliar with death and
dying. Medicine is charged with promoting death as a failure,
rather than as something that can be delayed but is inevitable.
The report highlights a myriad of challenges of mainstreaming
palliative care: the fact that most common chronic diseases
(unlike cancer) have uncertain prognoses, which makes assessment
of the need for palliative care difficult; the high degree
of integration needed to deliver effective palliative care,
not just across different professionals (specialists to palliative
care doctors and counsellors) but also across healthcare institutions
and homecare; the need for innovative public education so
that people can consider their choices more realistically;
and the lack of commitment towards research and development
on palliative care. Currently, both the US and UK spend less
than 1% of their cancer research budgets on palliative care
research.
In expanding palliative care, one must, however, be mindful
of vulnerable groups, such as the minorities or the disabled,
and ensure that they have access to palliative treatment,
without compromising their curative options.
Davies, E. and Irene J. Higginson, eds.
The Solid Facts: Palliative Care. Denmark: World Health Organization,
2004. http://www.euro.who.int/document/E82931.pdf
(accessed April 10, 2007).
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