Families and End–of–Life Treatment Decisions
An International Perspective
Thérèse Callus, Brigitte Feuillet – Liger, Kristina Orfali
"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.
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List of contributors
– Loved ones’ role in end of life care: evaluating deontological and utilitarian ethical arguments
– The individual nature of death
– The dying person and the triangle of loved ones : for a relational approach to the end of life
– A physician’s view on the complexity of end of life care and the role of family and close friends
– Family and loved ones in end of life care in French law : does end of life shape and define the “family”?
– The central role in Germany of the “Angehorige” in enhancing patient autonomy at the end of life
– The preeminence of relationships in the legal recognition of the rights of the patient’s loved ones in Switzerland
– End-of-life medical treatment: a limited role for loved ones to enhance patient autonomy
– A role for loved ones to promote patient autonomy at the end of life
– The broad definition of “relatives” in end of life care in Spain
– The central power of physicians over end of life matters in Italy
– Patient rights at the end of life and the role of family and loved ones in Greek law
– Ethical and legal debates on a dignified end-of-life and the role of the family in Hungary
– Loved ones and end-of-life medical care: the particular approach of Tunisian law
– Family, “loved ones” and medicalized end-of-life decision making in Senegal
– Multiculturalism and religion in end-of-life care in Lebanon
– Loved ones and end-of-life medical care in Turkish law
– End-of-life medical care: towards recognition of patient autonomy in Brazil
– “Loved ones” and end-of-life medical treatment in Chile
– Surrogate decision-making role in end of life care: the case of the USA
– The family and end-of-life medical treatment in Japan
– Families and end-of-life treatment decisions: an international study
Liste des contributeurs
Sous la direction de
- Thérèse Callus
- Brigitte Feuillet – Liger : Professeur à la Faculté de Droit de Rennes, membre de l’IUF
- Kristina Orfali : Professeur de bioéthique à l'Université de Columbia, New York
- Mark Siegler
This book gathers the contributions of : Penelope AGALLOPOULOU, Amel AOUIJ-MRAD, Mamadou BADJI, SylviaBRANDANI et G. NAVONE, Thérèse CALLUS, Maria-Claudia CRESPO-BRAUNER et Anderson LOBATO, Carmen DOMINGUEZ, Dina EL MAOULA, Brigitte FEUILLET-LIGER, Françoise FURKEL, Ryuichi IDA, Francis KERNALEGUEN, Jean-Marc LA PIANA, Pierre LE COZ, David LE BRETON, Dominique MANAï, Saibe OKTAY-OZDEMIR et B. BAYSAL, Kristina ORFALI, Verónica SAN JULIAN, Judit SANDOR, Geneviève SCHAMPS, Irène THÉRY.