Aging, end of life

 Summary of the Opinion

The aging of our society is now an undeniable demographic reality, prompting us to rethink how we live together to allow for better inclusion of elderly people. Legislative measures have been taken in recent years to address this, such as the 2015 law on adapting society to aging and the 2016 law on modernizing our healthcare system. In this social and political context, the National Consultative Ethics Committee (CCNE) chose to address the ethical issues of aging, which it feels are insufficiently present in the development of public policies regarding the support of elderly people. How can society be made more inclusive for its oldest citizens?

The CCNE began its reflection by considering the "concentration" of elderly people in care homes. It is clear that the institutionalization of dependent elderly individuals and their concentration together often create undignified situations, which in turn give rise to feelings of indignity in these people. Their de facto exclusion from society, likely tied to a collective denial of what aging, end of life, and death represent, raises serious ethical issues, particularly in terms of respect for the individual. While this forced institutionalization is often justified by principles of care and ensuring the safety of vulnerable individuals, it is frequently done under duress due to a lack of alternatives, and is compounded by the requirement that these individuals pay for housing they did not choose.

This opinion seeks to answer the following questions: how will our societies support the increasing dependency and loss of autonomy resulting from increased longevity and advances in disease treatment? What could the living spaces for these individuals, particularly those experiencing loss of autonomy, look like? What resources will we have to support them?

How will we respect the wishes of these vulnerable individuals to choose their living arrangements and lifestyle without necessarily accepting the normative, often institutional, models that are proposed or even imposed on them?

In this decidedly "political" opinion, the CCNE proposes several concrete avenues to raise awareness of this demographic reality—our aging population—and to ensure respect for the elderly.

New forms of solidarity are needed in our society to support the most fragile and vulnerable. To achieve this, the CCNE suggests:

-          Rethinking the creation of a fifth branch of social security to allow for better prevention and support of dependent individuals.

-          Changing the healthcare paradigm by more systematically involving relatives and caregivers, a necessary condition for keeping people at home. In this regard, a plan for caregiver respite and support could be established to give them the skills and time needed to assist individuals remaining in their homes.

-          Evolving social law, particularly to allow a relative to assist and support a sick or disabled person. The possibility of enhancing the personal activity account (CPA) could be explored in this context.

-          Considering new forms of volunteering to foster solidarity between those in good health and those suffering from illness or disability, along with their relatives.

-          Better protecting vulnerable individuals through the creation of an interministerial delegate for the protection of adults, as recommended by a recent report from the Court of Auditors.

The CCNE proposes strengthening aging support policies. According to them, it would be necessary to:

-          Develop a preventive culture to better anticipate old age, including home adaptation, the organization of personal services, and caregiver relationships.

-          Foster intergenerational dynamics between the healthy and the sick or disabled, between the young and the elderly, between employed individuals, the unemployed, and retirees... to encourage the transmission of knowledge and experience—particularly professional—of those who have become economically "inactive" due to age.

-          Use digital tools to support aging and create new forms of solidarity.

-          Better train, support, and value the work of home care professionals throughout their careers, especially by acknowledging the physical and emotional demands of these professions. Develop new professional skills or new roles, such as case managers.

-          Reconsider the concepts of performance and pricing in nursing homes (EHPAD) and in-home care services.

-          Promote local hubs that bring together services supporting the elderly at home, allowing them to keep the same routines and professional caregivers regardless of the services they require.

-          Encourage and diversify alternatives to nursing homes within the same area, such as intergenerational housing, self-managed housing, and intermediate housing for seniors (independent living residences; service residences).

-          Contribute to ending the isolation of the elderly by considering "nursing homes outside of nursing homes." For example, new buildings could be required to include one or two floors of housing for a nursing home. Additionally, the "nursing home of tomorrow" could be better integrated into urban planning schemes, potentially by forming a single territorial system where all services supporting the elderly at home are managed by one operator. 

This CCNE opinion, based on the example of the most vulnerable elderly people, more broadly makes proposals for a reform of the healthcare system, medicine, and the training of health and social workers. The CCNE observes that modern medicine contributes to the creation of complex and unique situations that deviate from the norm, in the sense of the average, and from evidence-based medicine, as these unique situations resist any form of expertise. In this context, the CCNE suggests:

-          Striving to adopt an approach that recognizes the singularity and otherness of medical situations.

-          Learning to work more collaboratively in teams to better address these complex situations marked by uncertainty.

-         Valuing deliberation and ethical reflection, even in a time and context where the trend is to always reduce time and emphasize action and performance. Within the framework of activity-based pricing reform, this interdisciplinary reflective and discursive act could be recognized for its role in helping make complex decisions.

-          Deeply reforming the training and education of healthcare professionals to enable and support this change.