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Beyond Safety to Lives of Meaning: Reforming Long-Term Care Based on the Values and Goals of Residents

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Oh reason not the need! Our basest beggars are in the poorest thing superfluous. Allow not nature more than nature needs, mans lifes as cheap as beasts.

We frequently talk about ‘meeting the needs’ of older persons who are frail or have complex needs – and in the context of long-term care during a pandemic, meeting these basic needs has become not only an urgent challenge, but too frequently a shameful failure. But as King Lear points out when rejecting his daughters’ insulting treatment, human life requires more than bare survival. Basic needs must be met, yes, but a meaningful life also requires attention to values, goals and wishes – things which may seem superfluous, but are the essence of a good life.

Over the past three decades, as policy makers have begun to grapple with population ageing, a number of policy frameworks have attempted to articulate what some of these values and goals might be, and how they might help us to design not only services and supports for older persons, but more broadly a society in which older persons are valued and included. These include, for example, the United Nation’s Principles for Older Persons, the Madrid International Plan of Action on Ageing, Canada’s National Framework on Aging, and the Law Commission of Ontario’s Framework for the Law as it Affects Older Adults, among others. The principles and values identified in these policy frameworks are broadly reflected in the Bill of Rights set out in Ontario’s Long-Term Care Homes Act, 2007. Yet policy frameworks and Bills of Rights have meaning only in practice. What do these principles and values mean in the context of Ontario’s long-term care homes? What can they tell us about what a good system should look like?

When older persons are consulted about what is important to them, autonomy and independence are always high on the list. As people age, become more frail, and perhaps develop cognitive impairments, they often find themselves on the receiving end of considerable paternalism. They may be assumed to be incapable of making choices for themselves, and well-meaning professionals or family members may make choices in their ‘best interests’ and without their input. But older people, like most of us, want to make decisions for themselves to the extent that they can, even if they are choices with which others disagree. Older people fear the loss of independence and being subject to the decisions of others, squeezed into lives that do not feel like their own. Organizations like the Advocacy Centre for the Elderly have pointed out the frequency with which older persons in long-term care are assumed to be incapable of making their own decisions, including decisions about visitors, treatment, and even their own sexuality.

The United Nation’s Principles for Older Persons identifies participation as a central value for older persons. This includes the right to be part of the broader community and to be actively involved in its affairs. The knowledge, experience and skills of older persons are too often overlooked in working to build our common futures. Despite the efforts of the Age-Friendly City movement and of aging-in-place strategies, we live in a very age-segmented society. And because our times are also very youth-focused, older persons may be seen as relics of time passed, with little to contribute, rather than repositories of experience and guidance. The very design of long-term care homes can lead to a sense of frail older persons as separate and apart from the communities in which they live. The fierce desire of older persons to remain in their own homes and communities for as long as possible is connected to their desire to remain a valued part of a community throughout their lives.

Perhaps most fundamentally, older persons have emphasized the importance of being treated with dignity, as people of inherent worth, unique and irreplaceable members of the human race. Particularly where age is combined with disability, ageism and ableism may combine so that frail older persons are treated as disposable, and somehow worth less than others. A simple example, commonly raised by residents of long-term care, is food quality. The current Level-of-Care Per Diem Funding amount for raw food is $9.54 per day. As a 2017 Wellesley Institute report on institutional food points out, these low amounts mean that many LTC homes report that they serve cheaper protein foods and fewer fresh fruits and vegetables and they often cannot meet residents’ special dietary needs. Yet, long-term care residents eat three meals per day in their homes, 365 days per year. Daily meals are an important opportunity for socializing, connecting with cultural heritage and special memories, and experiencing a sense of ‘home’.

What would a future long-term care system that was truly guided by principles of autonomy, participation and dignity look like? As abstract principles, they will mean little unless they are understood through the specific voices and experiences of those who need the complex supports provided through long-term care. Unless they are realized in the specific details of daily life, how can we bring choice and a sense of independence into the everyday experiences of those living in settings as heavily regimented as long-term care currently is? How can long-term care be consistently reintegrated into community, so that residents continue to be valued by and feel a part of the community that surrounds them? How can we ensure that the day-to-day fabric of their lives communicates that they are respected and valued by those around them – and by society at large? When King Lear dies of a broken heart, we see the grand tragedy of it, and we weep. But can we see it and address it, when we see this around us day by day?

The Re:Think Long-Term Care project aims to support reform of Ontario’s long-term care system, based on the voices and experiences of long-term care users, their families, and front-line workers. Our goal is to enable those with lived experience of the long-term care system to articulate and realize their vision of a system that provides lives of, not only security, but also autonomy, inclusion, participation and dignity. By empowering the voices of those directly affected by Ontario’s long-term care system, we can envision and move towards new approaches to long-term care, approaches that can support us all to live our lives with meaning and dignity to the end.

Written by: Lauren Bates, Consultant and Member of the BMG Leadership Team

Image Copyright: Fernando Saldanha

March 12, 2021

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