Person-Centered Care in Assisted Living: An Informational Guide

49 Pages·2010·2.02 MB·English

JUNE 2010
Acknowledgements
As with anything person-centered, a “community” of individuals was involved
in helping create this paper. The paper benefted from the contributions of
many individuals including: Jean Accius; Paula Carder; Walter Coffey; Heidi
Gil; Robert Jenkens; Cathy Lieblich; Steve Maag; Ethel Mitty; and Sheryl
Zimmerman.
Special thanks are also extended to the following individuals who were
essential sources of information, generously giving of their time and
knowledge: Beth Baker; Susan Gilster; Bill Keane; Annette Kelly; Dave Kyllo;
Michele Ochsner; and Mary and Vivian Tellis-Nayak. The valuable contributions
of Mauro Hernandez and Kim McRae are also gratefully acknowledged and
appreciated. Karen Love is the principal writer of the paper.
CEAL is grateful to the National Association of Boards of Examiners of Long
Term Care Administrators’ (NAB) for allowing this paper to expand on a
chapter in its Residential Care/Assisted Living Administrators Exam Study
Guide co-authored by this paper’s writer entitled, “Person-Centered Care in
Assisted Living.”
Note to Readers
This paper is intended as a “what is” person-centered care
informational guide, rather than a “how-to implement”
person-centered care guide. Please use it as an opportunity to dis-
cuss and advance dialogue about person-centered care. This paper
was commissioned by the CEAL Board; however, the views and
opinions expressed are not necessarily refective of every member
organization represented on the CEAL Board.
Person-Centered Care in Assisted Living: An Informational Guide
Table of Contents
I. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
II. Person-Centered Care Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
III. Historical Context of Person-Centered Care . . . . . . . . . . . . . . . . . . . . . . . . . . 3
IV. What is Person-Centered Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
V. Framework of Person-Centered Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
1. Core Values and Philosophy Element . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
2. Relationships and Community Element . . . . . . . . . . . . . . . . . . . . . . . . . . 10
3. Senior Management–Owner–Governance Element . . . . . . . . . . . . . . . . . . 12
4. Leadership Element . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
5. Workforce Element . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
6. Services Element . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
7. Meaningful Life Element . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
8. Environment Element . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
9. Accountability Element . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
VI. Person-Centered Care for Persons with Dementia . . . . . . . . . . . . . . . . . . . . . 31
VII. Final Person-Centered Care Considerations . . . . . . . . . . . . . . . . . . . . . . . . . 33
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
Attachment A (List of Individuals Interviewed) . . . . . . . . . . . . . . . . . . . . . . . 39
Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Person-Centered Care in Assisted Living: An Informational Guide
Person-Centered Care in Assisted Living: An Informational Guide
Introduction
To date, published information about person- The goal of this paper is two-fold. First, the paper
centered care in assisted living has been sparse. proposes a conceptual framework that can be
This paper expands on a chapter entitled tested and further refned through future research.
“Person-Centered Care in Assisted Living” in Although the literature and discussions with a
the National Association of Boards of Examiners range of stakeholders indicate some degree of
of Long Term Care Administrators’ (NAB) consensus around the key structural elements
Residential Care/Assisted Living Administrators of PCC described within, much work remains to
Exam Study Guide prepared by this paper’s writer be done to understand the interrelationships and
and Mauro Hernandez1. This paper presents a interconnectedness among these elements and
comprehensive framework about what is needed to more fully explore the most successful means
to support person-centered care (PCC) outcomes of operationalizing them. Second, it is hoped that
based on evidence-based practices obtained this paper will inform current discussions of PCC
through a broad review of peer-reviewed and in assisted living settings. While there are some
grey literature2. While there has been sparse assisted living providers that currently employ
assisted living-specifc research conducted one or more of the elements needed to support
about any elements of PCC, studies conducted PCC outcomes, many providers have not evolved
in other sectors such as nursing homes and the beyond the core values of a home environment
developmental disability population, as relevant, and improved service delivery (Utz, 2003).
are cited. In addition, the paper draws on over This paper is intended to help assisted living
40 in-person and telephone interviews, and communities more fully understand the
discussions with diverse PCC experts across structural framework that underpin PCC outcomes.
the aging services network including leaders in
The Center for Excellence in Assisted Living (CEAL),
the culture change movement, long-term care
in collaboration with Sheryl Zimmerman, Ph.D.,
practitioners and consumers.
from the University of North Carolina-Chapel
While the paper’s focus is to detail PCC in assisted Hill, is currently developing a community-based
living, it is important for the reader to under- participatory research project to identify and study
stand that the national PCC movement (known by the structures, processes and outcomes of PCC,
many terms, see page 4) is not new and encom- both conceptually and operationally in assisted
passes the wide spectrum of people who are living. The research project will also examine the
recipients of care and services (e.g., individuals relationships between PCC structures, processes
of all ages who have physical, developmental, and outcomes, and in what combination and to
intellectual, behavioral, cognitive and/or mental what extent the structures and processes relate
health disabilities) and the providers that supply to different outcomes. It is hoped the fndings
the care and services (e.g., hospitals, rehabilita- from the project will advance knowledge and
tion centers, primary care providers, nursing understanding about PCC, and inform operating
homes, group homes, subacute centers, assisted practices and policies.
living, adult day care, home care). The general
1 Utilized with permission from NAB.
tenets and practices of PCC — honoring the person
2 “Grey literature” refers to published materials
— are the same across settings and populations in non-peer reviewed sources such as trade and
wherever he or she lives. industry magazines.
Person-Centered Care in Assisted Living: An Informational Guide 1
Person-Centered Care Background
Over the past 20 years are treated with respect and dignity. The goal
much has been written of transformation is to reorient the institutional,
about PCC among defcit-oriented and treatment-driven nursing
different forms of aging home culture to one that is home and embraces
services. PCC has resident self-determination and personal choice
become a dominant through relationships and community. This effort
model in various models to transform nursing homes from institutions to
to improve quality of real homes for the people who live there became
care and life embraced commonly known as “the culture
by consumers, advo- change movement.”
cates, and, in many
Both proponents of culture change and assisted
cases, providers and
living providers used the term PCC to refer to
regulators. The core
changes in the physical environment (to create
principles of PCC include
home), service delivery (resident-directed)
the assurance of individuality, choice, privacy,
and core values (dignity, respect, choice,
dignity, respect, independence, a sense of being
independence and privacy). As the ranks of
part of a community and connected to the larger
the nursing home culture change proponents
community, and a home environment in which
swelled and research efforts began providing
to reside. Interestingly, although not often
knowledge to improve practices, the usage of
explicitly recognized, the pioneers of assisted
the term PCC by culture change reformers began
living also embraced similar principles in its
to refer to a widening set of elements that were
foundational culture.
not necessarily also being adopted by assisted
The early assisted living providers of the late living providers including: a relationship-based
1980s used the term “person-centered care” operational culture; leadership that fosters
to describe the collective changes they were staff empowerment, including self-directed
implementing in this newly formed aging services work teams; and helping elders optimize their
sector. At the same time, the U.S. Congress well-being through meaningful activity and
legislated sweeping changes for certifed nursing opportunities to experience self-worth and
homes (skilled nursing facilities/SNF) through purpose in daily life. There are some assisted
the Omnibus Budget Reconciliation Act (OBRA) of living providers that currently employ the
1987, which mandated a national minimum set wide set of elements needed to support PCC
of standards of care and resident rights. One of outcomes, but many providers have not evolved
OBRA’s signifcant changes included an emphasis beyond the innovations to the core values, home
on a resident’s quality of life in addition to the environment and improved service delivery to
quality of their care. The person-centered focus create a fully transformed humanistic* culture.
of OBRA spurred people already committed to
person-centered care for nursing home residents
to form a movement to transform nursing home * The term “humanistic” in this paper is used to
describe a way of life centered on human interests
culture and environments into life-affrming and values that stress dignity, self-worth, purpose
settings in which elders direct their own care and and self-determination for elders.
2 Person-Centered Care in Assisted Living: An Informational Guide
Historical Context of
Person-Centered Care
Tom Kitwood, a British so by promoting the need to shift the nexus of
gerontologist, was one decision-making to the elder, or as close to them
of the frst to use the as possible, ensuring that they directed their
term “person-centered own daily schedules and preferences (Lustbader
care” in aging services. & Williams, 2006). Some critics view Eden’s
He used it to describe an approach as simply “fur and feathers,” referring
empowering philosophy to the inclusion of pets in nursing homes.
of care that rebalances Improving the environment by including pets is
work priorities from a just one of many elements of the Eden model,
focus on accomplishing but many people mistakenly describe it only in
tasks to a focus on the terms of pets and plants.
person needing assist-
Other national examples of transformative
ance. Care is not
nursing home care aimed at enhancing quality
organized for staff
outcomes that incorporate some or all of
convenience, effciency or other such criteria
the elements of PCC include: the Wellspring
(Fazio, 2008). Critics of institutional long-term
Program, the GREEN HOUSE® Project and the
care view its focus primarily as task-oriented
Household Model. The common goal of these
resulting from a focus on effciency and the
approaches is the realignment of operational
prevalence of hierarchical management systems
approaches to provide relationship-based
that value the accomplishment of tasks. PCC
assistance and support in an empowering and
rebalances the work priorities to focus on the
nurturing home environment for elders in which
elder instead of the tasks that need to be
they can live and thrive. In addition to improved
accomplished (Tellis-Nayak, V., 1988).
quality of care, anecdotal evidence abounds
In the mid-1990s, a movement of nursing home that these models also enhance quality of life
pioneers began gathering and discussing the for residents. Rosalie Kane and colleagues
transformation of nursing homes from medically- found that opportunities for meaningful activity,
oriented institutions into homes for elders by relationships, autonomy, privacy, dignity,
implementing the person-directed care philo- security, physical comfort and enjoyment led to
sophy and practices. In 1997, this movement measurable improvements in quality of life (Kane
became a non-proft national organization, now et al., 2003). While there is growing agreement
known as the Pioneer Network, dedicated to about what constitutes quality or how it should
changing the culture of aging in the 21st century. be measured in assisted living, there is strong
consensus that optimizing resident well-being is
The Eden Alternative® was one of the frst
the desired outcome (Zimmerman et al, 2008).
national efforts in the United States to create
an organized infrastructure to transform the In general, the pioneers of culture change
institutional culture of nursing homes into homes and the developers of assisted living generally
that included some features of PCC. Eden did worked on separate paths with little overlap
Person-Centered Care in Assisted Living: An Informational Guide 3
despite the many the National Association of Long Term Care
National parallels of their sectors. Administrator Boards recently included PCC in its
The developers of study exam guides for both assisted living and
organizations
assisted living eschewed nursing home administrators.
increasingly anything that smacked
There are many terms used for person-centered
of “nursing homes” and
recognize care, sometimes interchangeably. The use of
were intent on innovating
different terms is sometimes service sector
new, improved senior
PCC as the
related such as patient-centered care or
living environments.
patient-directed care within the hospital
gold standard
Much of their attention
community, and person-directed services for
was devoted to getting
for care and
individuals with physical disabilities. Sometimes
fnanced to develop this
the selection of a term represents a difference
services.
new model of care
in philosophical opinion. For example, within
and resisting regulatory
the long-term care community there is
efforts to impose nursing home-like require-
variability among terms used (e.g., resident-
ments. The culture change proponents were
centered care; resident-directed care; person-
initially immersed in their nursing home work
centered care; and person-directed care).
and not focused on advances being made in
In the nursing home sector, some have adopted
other aging services sectors (e.g., adult day
the use of a continuum of terms to differentiate
care, home care, assisted living). These sectors
between a staff-directed and a person-directed
typically function as individual silos.
culture (Misiorski & Rader). Some prefer the
While assisted living homes and nursing homes use of the term “person” to recognize the vital
were adopting innovations in physical design, role and connection between the resident,
service delivery and core values orientation, family and staff. Others feel strongly about
transformative efforts to advance quality the use of the term “directed” instead of
outcomes were also underway in hospitals. “centered” to connote the care receiver’s
Planetree, an organization initially formed rights of independence and choice. This type
to transform the acute-care culture in 1976, of preference variability within a single service
created a viable and cost-effective model for sector can also be found in the developmental
implementing PCC in hospitals (Charmel & disability community (e.g., person-centered
Frampton, 2008). thinking, person-centered planning and
person-centered services).
National organizations increasingly recognize
PCC as the gold standard for care and services. The commonality among all the various terms
The Commission on Accreditation of Rehabil- is to signify that the elder is either personally
itation Facilities (CARF) includes PCC in its involved and directs their care, or if not able,
standards manual. The National Center for that care is provided in the manner and
Assisted Living includes PCC in its “Guiding preference that best serves them. The term
Principles for Quality in Assisted Living.” The person-centered care (PCC) is used in this
American College of Health Care Administrator’s paper because it is the more widely used term
“Principles of Excellence for Leaders in Long- in the aging literature (Bowers, 2009).
Term Care Administration” states that “PCC
is the ultimate goal of long-term care,” and
4 Person-Centered Care in Assisted Living: An Informational Guide
What is Person-Centered Care?
While there is as yet It has become almost politically correct to use
no offcial defnition the term “person-centered care” or alternatively
of PCC, its supporters culture change, but not everyone uses the
generally agree that term to signify the same thing. Some use the
PCC is defned as a term PCC to refer to a process of instituting an
comprehensive and operational change within their organization
on-going process such as implementing a new dining program.
of transforming an Others use PCC to mean that elders can choose
entity’s culture and when to eat and bathe. In actuality, to realize
operation into a nur- PCC outcomes requires deep organizational and
turing, empowering operational system changes that refect different
one that promotes values and beliefs about what constitutes
purpose and meaning quality care, a nurturing environment in which
and supports well- to live, and a positive environment in which to
being for individuals in a relationship- work. Attaining PCC outcomes is a continual
based, home environment. process. It can take years just to fully implement
the structural elements of PCC depending on
Each of the elements in the description are
how evolved an organization is to begin with
fundamental to the essence of PCC: (a) a
(Interviews, 2009). Incorporating even some
comprehensive and on-going process; (b) the
elements of PCC without total transformation
transformation of organizational operations
has benefcial results. However, to attain the full
and culture; (c) adoption of nurturing and
benefts and value of PCC, an organization must
empowering practices; (d) enabling elders to
fully align its organizational culture and all of its
experience purpose and meaning in their daily
operations systems to practices that support
lives; (e) a relationship-based culture; and
PCC outcomes.
(f) a home environment. Giving priority to these
components is supported by fndings from a It is possible to have good quality of care without
recent study of satisfaction surveys completed good quality of life. For example, elders may
by assisted living residents. Researchers found be well cared for in terms of their health care,
that the features of an assisted living community hygiene, nutritional needs and housekeeping
that have the greatest impact on residents’ (quality of care), but unhappy that they, for
satisfaction with their quality of life include: example: consume food that is unappealing;
quality of daily life (what they do each day); have to bathe in the morning when they prefer
their relationships with the staff and other an evening shower; awaken to vacuuming in
residents; their level of control; and the degree the middle of the night because that is when
to which they feel at home (Wylde, 2009). there is the least amount of foot traffc; and are
The fndings from this study closely parallel the lonely for companionship. PCC positively affects
key elements that defne PCC. The next section, quality of life and quality of care for elders with
“Framework of Person-Centered Care” provides the goal of transforming from effciency-based,
details and context for these elements. medical or “paternalistic” models of care to
Person-Centered Care in Assisted Living: An Informational Guide 5
“consumer-directed” centered care outcomes). In fact, only parts
Still needed models that honor elders’ of the operation were culture changed and
life experiences, choices, included features such as: caring leadership;
is scientifc
routines and the natural treating staff respectfully; staff recognized and
inquiry into
rhythms and spontaneity appreciated for their efforts; and organizational
what is
of daily life. These commitment to staff training. Other parts
needed to are often cost-neutral of the operation were far from being culture
realize PCC features that invaluably changed including: night staff waking residents
contribute to elders’ and getting them dressed to help alleviate
outcomes and
psychosocial well-being, the day shift’s burden of getting residents up
how elements
sense of self worth, and ready for 8 a.m. breakfast; intractable
interact with
purpose and physical treatment of staff absences; and hierarchical-
and correlate health (Interviews, style management practices. The author found
to one another. 2009). that culture change does not improve outcomes
for direct-care workers in nursing homes. This
To date, there has been no comprehensive
is analogous to saying that good eating habits
research examining what specifc elements
are not benefcial to health when the study
are needed to support PCC outcomes in any of
participants only cut back on consuming dessert
the aging service sectors. Some research and
but continue to eat large amounts of other food
national initiatives such as “Better Jobs Better
such as bread, pasta and butter. The tenets
Care” have focused on singular elements of PCC
of PCC suggest the necessity of effectively
such as workforce practices or environmental
addressing all of the elements that contribute
design. Still needed is scientifc inquiry into what
to successful PCC outcomes and understanding
elements are needed to realize comprehensive
their interrelatedness and connectedness are as
PCC outcomes, and how these elements interact
important as addressing all the elements in one’s
with and correlate to one another.
diet for benefcial health.
A published research study, entitled “Culture
Although research is needed to identify
Change Management in Long-Term Care:
what elements are needed to support PCC,
A Shop-Floor View,” illustrates how a lack
communities that have achieved PCC outcomes
of research and understanding about what
generally have a common understanding of what
constitutes PCC can lead people astray and to
elements are needed and their interrelation
wrong conclusions (Lopez, 2006). The study’s
and connectedness. There is a growing body of
lead researcher, a sociologist, admirably
experience and information from approaches and
committed to being fully trained and worked
models such as THE GREEN HOUSE® Project,
part-time as a certifed nursing assistant in
the Household Model, Eden Alternative® and
order to better inform his understanding of
Dementia Care Mapping. The GREEN HOUSE®
what he observed and experienced during the
Project demonstrates that similar structural
study. He unfortunately was not equally well
elements are needed for both nursing homes
informed about what was needed to support
and assisted living.
PCC outcomes. He inaccurately premised the
research, conducted ethnographically, on his There is anecdotal evidence that the fnan-
belief that the nursing home being studied was cial ramifcations of implementing PCC are cost
operationally culture changed (i.e., had person- effective. One study found that for a North
6 Person-Centered Care in Assisted Living: An Informational Guide