Families and End-of-Life Treatment Décisions

An International Perspective

« 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

décision alone. While a competent patient increasingly participates in médical décisions, 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 afso 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 hïm a genuine right of self-détermination ? To this end, will they be granted a right of

information only about the patient's condition, or even access to his médical records ? Will their role be affected

by the existence of living wills drawn up by the patient in question ?

The outcome of debates between légal 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 thùs 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 thèse 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.