Families and End–of–Life Treatment Decisions

Présentation

"The book of life is the supreme book that we can neither close nor reopen at
will."This quotation from Lamartine, the French poet, once a perfect
illustration of the end of life in bygone societies, can no longer be said to
apply. In fact, today, in one out of two cases in our modern societies, it is
the medical team who closes this book without any intention of cutting life
short. Generally, however, the physicians do not make this decision alone.
While a competent patient increasingly participates in medical decisions,
including when it’s a matter of life or death, those nearest to him (usually
the family but not always) endorse this responsibility once he becomes
incapable of expressing his wishes. Many questions surround not only this
concept of «nearest and dearest», or “loved ones”, but also their roles and
legitimacy. Whether they act as the patient’s legal representative, authorised
agent or trustee, or if they are stripped of all legal power, will the «loved
one» be simply consulted by the caregivers on the presumed wishes of the
patient regarding end-of-life choices? Or must they guarantee him a genuine
right of self-determination? To this end, will they be granted a right of
information only about the patient’s condition, or even access to his medical
records? Will their role be affected by the existence of living wills drawn up
by the patient in question ?

The outcome of debates between legal experts and physicians, philosophers and
sociologists from seventeen countries, the chapters in this book analyse the
current status and role of these relatives (and non- relatives) close to the
patient at the end of life. Numerous European national laws are thus compared
and are also benchmarked against other practices, in North and South America,
in Africa and in some Asian countries.
Beyond the legal, cultural and ethical differences that clearly separate these
various traditions, a recurrent question arises: more than providing
paternalistic protection, does the “loved one” not always have to ensure
respect for what «their patient» would have wanted, thus guaranteeing up to
the end of his life a basic right, namely his decision-making autonomy? If
this book demonstrates the difficulty of such a task in different contexts, it
also attempts to pave the way to a more humanistic approach across cultures to
advocate respect for the patient at the very end of his life.