A Call for New Innovative Models for Continuing Care Centres That Humanize Care and Promote Quality of Life

By Dr. Irene Coulson, Ann Keane, Sean Himsl and Kevin Davediuk
In 1996, there were 240,000 Canadians receiving care in continuing care centres and this number is expected to triple or even quadruple by the year 2031 (Health Canada, 2002). Currently more women than men (38% v/s 24%) over the age of 85 years require continuing care (nursing home), and this age group will continue to be the fastestgrowing group in the future (Health Canada, 2002). Mullins and Hartley (2002) estimate that 43% of older people aged 65 years and older will spend some time in a continuing care centre before they die.

Introduction

Older people overwhelmingly prefer to live in the community and age in place. However, most of us accept the notion that we need continuing care centres (nursing homes) to meet the needs for some individuals and always will. Regrettably, continuing care centres are often viewed by society as places where a person’s autonomy, privacy, independence and quality of life are diminished. Quality of life relates to a person capacity to experience enjoyment, emotional and intellectual activities in their life (Muldoon et al. 1998).

A new generation of older baby boomers and the demand for quality care and quality of life in later years, coupled with scarce resources, will give rise to the demand for new models of service delivery in continuing care. In the last decade, the discussion of quality of life in institutional long-term care settings has expanded significantly and has been accompanied by numerous innovations in the delivery of care to improve resident outcomes. These changes have evolved because of changes in regulatory processes, managerial emphasis on continuous quality improvement, market demands for personalized services, increased advocacy for long-term care residents and more importantly the rights of residents (Bearon, 1997).

While continuing care centres in the future will have a key responsibility to promote quality of life, the gray wave of baby boomers will expect active aging and opportunities for health participation and security, in order to enhance their quality of life. Active aging aims to extend healthy life expectancy and qualify of life for all, including those who are frail and in need of care (World Health Organization, 2002). The purpose of this paper is to promote a dialogue among health care professionals about the need to create innovative models that humanize the care provided in continuing care centres and the need to address the rights of residents, while encouraging active aging and health promotion strategies.

Promoting Active Aging and the Rights of Residents

Why are aging, quality of life and health important to us all? Throughout the world the aging process unifies us as a human race and defines us all. The fact that the world’s population is aging is a triumph to the human race. The traditional definition of health, described as the absence of disease or disability, is inappropriate for older persons. While older persons can experience disability, they still can achieve improved quality of life and good health.

Definitions of health for older people must include “…health and well-being as inseparable from identities and experiences accumulated throughout life.” (Kendig 1996, p. 369) Kendig further goes on to say that health for older people should be viewed from the perspective of their friends, adult children and doctors, and provides a more holistic understanding of older people’s health actions. Health defined in this manner may provide clues as to how older people are actively aging, organized and motivated to align themselves with healthy ways of living (Kendig 1996).

The term ‘active aging’ was adopted in the late 1990’s by the World Health Organization (WHO 2002) in exchange for healthy aging because it was more inclusive and recognized factors in addition to health care that affect individuals and how populations age. Active aging is defined as “…the process of optimizing opportunities for health, participation and security in order to enhance quality of life as people age” (WHO 2002, p. 12). The WHO states that the determinants of active aging include economic, social, personal, and behavioral determinants, physical environment and access to health and social services. There is evidence to show that these predictors can determine how older people and populations age.

The active aging approach shifts strategic planning from a needs-based approach to a rights-based approach by recognizing the rights of older people for opportunity and treatment in all aspects of life, thus promoting healthy lifestyle behaviors. While provincial organizations play an active role in promoting health, quality and the rights of residents, there is still a need for a national coordinated approach on the rights of residents who reside in continuing care centres.

The Right to Quality Care and Quality of Life

We are all aging and collectively we yearn for quality of life and good health in old age. There is yet no single approach to measuring quality of life. Quality of life measurement tools still remain somewhat obscure, ill-defined and/or inconsistent in their utilization. Quality of life is often measured as how individuals perceive their health status or well-being (Muldoon et al. 1998). How quality of life is perceived by individuals and addressed by health policy and services will be one of the greatest challenges this century will need to address.

In contrast, quality of care can be measured, with instruments such as the ‘Minimum Data Set’ (MDS). The MDS addresses multiple domains including cognitive function, sensory, physical functioning, pain, incontinence, skin problems, and pressure ulcers, nutrition, diagnoses, signs and symptoms, special treatments and medication use. (Berg, Mor, Morris, Murphy, Moore, Harris, 2002). The MDS Quality Indicators were developed by a team of researchers at the Center for Health Systems Research and Analysis (CHSRA) at the University of Wisconsin-Madison (Zimmerman, et al. 1995 in Hirdes 2000). Quality indicators have several important applications. “The main application of the MDS is to support care planning through the use of scientifically derived clinical algorithms known as Resident Assessment Protocols (RAPs). RAPs are used to alert clinicians to the current or imminent presence of problems that posed threats to the resident’s health or independent functioning (e.g., falls, depression, pressure ulcers)” Hirdes (2000, p. 4).

Together both the objective dimension of quality of care and the subjective dimension of quality of life can provide a broad ranging context, incorporating in a complex holistic way, a person’s physical health, psychological state, independence, social relationships, personal beliefs, and relationships to salient features in the environment (WHO 1998).

Also commended for their work in quality is the Canadian Council on Health Services Accreditation (CCHSA) which advocates that continuing care centres must demonstrate that they are working with residents to promote health and prevent health problems. The CCHSA is a national, non-profit, independent organization, whose role is to help health services organizations, across Canada and internationally, examine and improve the quality of care and service they provide to their clients (Dobblesteyn and Donovan 2001). Accreditation provides management with a road map that outlines challenges and establishes a framework for continually improving the quality and efficiency of care and service.

In Canada, there is still more work needed to address how residents can live a fulfilling and satisfying life in a continuing care centre. Health Canada (2002) supports the United Kingdom’s Centre for Policy on Aging Report, which outlines the required ‘Principles underlying daily life in a nursing home setting’, outlined below:

Principles for a Better Life

Pearson, Hocking, Mott, and Riggs (1993) in Iwasiw, Goldenburg, Bol, MacMaster (2003) validated in their study that resident satisfaction with life in a continuing care centre is a key element in determining the quality of care and quality of life provided. Researchers in an earlier study had found that residents' perceptions of quality of life (satisfaction and successful adjustment in a continuing care centre) are related to the amount of situational control, constraint and limitations of the continuing care centre (Ryden, 1984; Storlie, 1982). In more recent studies, researchers have shown that human relationships and social contact, especially with family, are more crucial in determining quality of life (Kelley, Specht, & Maas, 2000; Rantz et al., 1999).

The United Nations (1999), ‘International Plan of Action on Aging Principles’ supports that priority attention is given to the situation of older persons. The principles address that older people have the right to independence, participation, health care, the pursuit of self-fulfillment and dignity of older persons and are important components to achieve well-being and a prosperous life (www.un.org). The United Nations states that we need to add quality of life to the years that have been added to life.

The Challenge to Continuing Care Centres

“Alternatives to or substitutes for nursing home care are expanding rapidly, which may reduce the demand for such care” (DuNah, Harrington, Bedney, Carillo, 1995, p. 2). While these substitutes are important in reducing institutionalization among older people, there will always be a need for continuing care. The demand for continuing care has been growing with the increasing aging population.

Still today, no one wants to go to a continuing care centre. Why? “Canadians themselves are also changing in many ways. They have become much less tolerant of poor quality of care, their preferences to avoid institutional placements have been magnified over time, and new cohorts of older adults are much more likely to challenge the conduct of authority figures including health professionals” (Hirdes, 2000, p. 2).

When public attention is focused on continuing care centres it is usually for negative reasons. “Unfavorable media stories, increased enforcement of nursing home (continuing care centre) regulations and observation of facilities and high profile litigation against nursing homes all highlight the downside of long-term care” (Kane 2003, p. 1). Molloy (2002) stresses that every continuing care centre administrator must become involved in improving the image of our continuing care centres. Although the image of continuing care centres has been improving over the last decade, there is still a dominant belief from society that they are not good places to enjoy your life.

“Resident expectations of a nursing home are often low because there is a perception that it is a place where they are effectively just waiting to end their lives. While delivering care, nursing home staff believe that they are acting in the resident’s best interests, while adhering to strict regulations and routines’ (Huda 1995, p. 45). “Residents fearing that care may be withheld if they express their needs, some residents may become more compliant, others refuse treatment and display an attitude of nonparticipation” (Mullins and Harley 2002, p. 35). Residents who reside in continuing care centres may choose to exercise their personal autonomy quite differently, than if they were still living in their private home.

Personal autonomy can be defined as having the distinct values of individual liberty, privacy, free choice, self-governance, self-regulation, self-rule and independence (Collopy, 1998; Mullins & Hartley, 1998). Moreover, as people age their quality of life is largely determined by their ability to maintain autonomy and independence (World Health Organization, 2002). The greatest challenge we face this century is to create continuing care environments that will meet the rights of older people, while promoting quality of life and active aging.

A Call for New Models that Humanize Care and Promote Quality of Life

The creation of innovative models continue to evolve in continuing care that promote opportunities for residents to live and direct their own lives; to decide how to arrange their time and to pursue their own interests (Kane, 2003). It is not the scope of this paper to discuss at length strategies that can be implemented to promote active aging, quality and the rights of residents in continuing care centres; what follows are only a few of the important concepts which an organization can explore that may give rise to new service models in continuing care.

Creating a sense of well-being and quality

There must be a balance between providing residents with services that relate to quality care and quality of life. Rothman (2003) supports that there are three key questions that every health care provider should answer about their resident’s wellbeing and quality of life:

Rothman stresses that holistic documentation should provide notation not only about the resident’s care, but also about the resident’s perception of their quality of life. Rothman argues that one of the greatest barriers administrators face is “a world of increasing needs and decreasing resources, increasing regulations and increasing lawsuits – all of which must be managed while seeking to ameliorate pain and suffering with grace and dignity”.

(http://www.asaging.org/am/cia2/nursinghome.html)

The literature presents various methods that can evaluate quality care and quality of life, such as MDS and the Dementia Care Mapping method. Dementia Care Mapping is a method used to evaluate the well-being of a person with dementia and is based on the philosophy of person-centered care. Person-centered care is centered on the humanistic position that the personhood of individuals should be preserved through positive interactions (Kuhn, Orthgara, Kasayka, 2000).

Transform education in continuing care centres

Creating new continuing care environments must include a transformation in how education and training is delivered and provided to staff. Education must include the rights of residents and how principles for a better life can be promoted in service delivery. All education should include measurable behavioral expectations of staff, in order to promote and sustain lasting changes.

The Eden Alternative in humanizing the environment

The Eden Alternative was developed by geriatrician Dr. William Thomas in a nursing home in upstate New York in 1991 and is carefully described in his 1997 book (coincidentally) entitled A Life Worth Living. “Thomas says that the major problems of nursing home residents are disease, disability and decline. He believes the major problems are loneliness, helplessness and boredom, which cause a decay in residents' spirit” (Bearon 1997, p. 1). Edenized facilities attempt to reduce bureaucracy, artificial physical barriers and unnecessary routines to enable the primary work of spontaneous caring to take center stage. The Eden approach is an extension of the major humanizing changes already taking place in the continuing care industry.

Conclusion

Achieving top marks for demonstrating evidenced-based well-being and quality of life programs for residents in continuing care centres, will be one of the most important report cards expected by consumers this century. High on the research agenda are the development of validated and reliable tools to measure quality of life and the wellbeing of residents. Without validated and reliable tools to articulate quality of life, the person's emotional, psychological, social, cultural and spiritual needs will continue to be minimally addressed.

Other important questions that need to be addressed include: How does a continuing care centre meet the needs and passions for the lives of so many individuals, yet, still operate being a responsible steward of fiscal realities? How do organizations ensure they hire not only employees for their education and skill sets, but, more importantly, for their passion and their commitment towards the life of each resident?

Future research also needs to identify additional factors related to how continuing care centre staff and administrators view personal autonomy and what changes they would implement to improve their residents' quality of life and why they have not done so, yet?

Aging is not an issue to be addressed through a single, confined approach or solution, but rather a multi-faceted issue presenting challenges in a number of public policy areas (Government of Canada, 2002). All levels of governments and health care organizations need to respond to the challenges of an aging Canadian society. More importantly residents and families need to be involved in the quality service design and how the design will be administered. Research is warranted for further exploration of resident and family perceptions of ‘continuing care centre’ life and to explicitly address the resource and clinical implications for implementing quality of life and enforcing the rights of residents.

The future of continuing care environments must include the creation of a positive, supportive environment and the provision of quality of life that maximizes autonomy, life satisfaction, dignity and purpose in the face of dependency and decline (Health Canada, 2002). “The challenge for Canada is to develop the most effective strategies to expand the disability-free years of life, to reduce the occurrence of chronic diseases and disabilities, and to improve the health of seniors” (Government of Canada, 2002, p. 26).