Définir la qualité de vie des aînés vivant à domicile avec des incapacités : enjeux éthiques émergeant des politiques de santé publique et des services à domicile au Québec

The Quebec government uses the notion of “quality of life” in its public health policies, particularly that of 2003 (Chez soi: le premier choice) and 2012 (Vieillir et vivre ensemble, chez soi, dans sa communauté, au Québec), in order to affirm its commitment to provide quality home care services to seniors, and thus enable them to live and grow old at home, with dignity. The state uses the concept of “quality of life” as a pesuasive argument, but without clarifying its meaning. Without a definition, this concept contributes to the implementation of policies and procedures that, in the end, do not meet the commitment originally made by the state.  To help respond to this lack of definition, a qualitative study was conducted involving thirty-five people aged 65 to 95, living at home with disabilities. Through semi-structured interviews, participants expressed their understanding of the meaning of “quality of life” and defined it with eight groups of recurrent keywords: 1) Autonomy, Health; 2) Social relationships, caring; 3) To be well surrounded: family, friends; 4) Adaptation, Acceptance, Known Limits; 5) Means: Services, Money; 6) Home; 7) Love, Happiness, Spirituality; and 8) Security. In connection with Amartya Sen’s capabilities approach, more than half of the participants confirmed that they had “freedom of achievement”. By contrast, more than a quarter of older people said they did not have this freedom. Others participants qualified their quality of life with conditions, including “what is needed”, “health”, “sufficient financial resources” and “feel useful”. The results of these interviews were compared with those of two other qualitative studies conducted in Great Britain and France, which used the same five general questions to define the quality of life of seniors. The terms used by the participants in the three countries match, showing that seniors’ concerns and priorities are similar despite different geographical locations. This study can arguably help those decision-makers responsible for implementing policies (e.g., home-based services) to accomplish their task of ensuring the quality of life of older persons, by understanding the real needs of the elderly. However, there was a significant discrepancy between the 2003 and 2012 Quebec policies on home care services and the reality experienced by seniors. The reports of the Québec Ombudsman, the Auditor General of Quebec, the Health Council of Canada and the results of studies by many researchers show that home care services are not deployed as promised by the policies. Poor elderly people who cannot compensate for services not provided by the state, have inequitable access to services and live in situations of vulnerability, which can even lead to early institutionalization.  Every senior living at home with a disability has the right to a dignified life, regardless of their financial situation. Ensuring quality of life is a shared responsibility of all actors in society, including community organizations, the entourage of the elderly person and seniors themselves. However, each of these actors must assume a share of responsibility proportional to their power of action. Since the state has the capacity to assume responsibilities and achieve goals far superior to any other organization or family, it has a concomitant population-level responsibility to serve all citizens.

Keyphrases: quality of life, seniors, home, disabilities, ethics, aging, ageing, shared responsibility, autonomy, equity, social justice, capabilities