Is Social Work Prepared for Diversity in Hospiceand Palliati

Is Social Work Prepared for Diversity in Hospice
and Palliative Care?
Christine M. Rine
The purpose of this article is to assess current and future trends
in hospice and palliative care
with the objective of informing culturally appropriate best
practice for social work. Concern
for the intersectionality of racial, ethnic, social, and other
differences in end-of-life (EOL)
care is imperative given the ever growing range of diversity
characteristics among the
increasing aging populations in the United States. A review of
literature from the current
decade that is pertinent to the profession contributes to the
ability of social work to consider
evidence and build agreement germane to EOL practice settings.
Administrative reports,
government data, academic literature, professional standards,
and assessment tools contrib-
ute to the profession’s ability to work toward cultural
competence and develop practice
strategies for EOL care. The varied roles held by social workers
across health care arenas
provide a unique opportunity to promote cultural competence
and advance best practice
on all levels of work.
KEY WORDS: cultural competence; diversity; end-of-life care;
hospice; palliative care

Before the start of the 21st century, 2020 wasdemarcated as a
year for goal setting basedon predictions and anticipated trends
in at-
tempts to properly prepare for the future. Now that
2020 is only a few years away, shedding all of its
futuristic connotations, it is time to examine if and
how aims for preparedness have been met. At pres-
ent, efforts that have been made to plan for the
future can be appraised on their ability to accom-
modate both realized changes and those on the
horizon. Of particular interest are shifts in culture;
since the 2000 U.S. Census there has been a great
deal of attention to demographic trends and their
role in predicting dramatic changes to the world in
which we live (Perez & Hirschman, 2009). Many
anticipated developments have already manifested
completely or to some degree often evidenced by
sweeping consequence. For example, significant
impact is directly observable in the language we use
to understand commonplace terms long engrained
in our society. To illustrate, the term “minority” to
denote the proportion of individuals of nondomi-
nant culture is currently statistically incorrect. This is
evidenced in several states and has been inaccurate
for many years in almost 50 metropolitan areas
across the nation. It is estimated that by 2044 this
misnomer will connote the nation as a whole
(National Association of Social Workers [NASW],
2015a; U.S. Census Bureau, n.d.-a). Whether real
or illusory, “minority” populations continue to bear
plainly real racial and socioeconomic encumbrances
of nondominant group membership. As a result, the
oxymoron “majority minority” has become more
widely used in our lexicon to represent statistical
correctness while relegating nondominant groups of

greater numbers to continued minority status.
Actualized and mounting changes demand that
professionals across disciplines and settings consider
how demographic developments currently and immi-
nently bear on readiness and efforts for the future.
Any field of professional social work practice is
appropriate for consideration. However, of particu-
lar interest is hospice and palliative care as aging po-
pulations are more likely to require such services
and the aging demographic will continue to drasti-
cally increase in number (Bullock, 2011; Carson &
Sabol, 2016; Cruz-Oliver et al., 2016; Doukas,
2014; Flores, Herman, Gates, & Brown, 2016;
Ollove, 2016; U.S. Census Bureau, n.d.-a). Due to
varied roles held by social workers within these set-
tings, the profession is well positioned to promote
culturally competent best practice across all levels of
work (Agnew, Manktelow, Haynes, & Jones, 2011;
Bosma, Johnston, et al., 2010; Bullock, 2011; Henry
et al., 2015; Murty, Sanders, & Stensland, 2015;
Watts, 2013; Yang & Mahon, 2012). Yet, the ever
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changing demographics of clients, caregivers, and
families who may benefit from hospice and pallia-
tive care present unique challenges for culturally
competent social work practice. Although medical
conditions are often the most conspicuous concern,

a range of cultural dimensions require additional
attention. This is imperative as populations who
have been traditionally underserved by hospice and
palliative care are now seeking this care. Other cul-
tures may require increased engagement and recruit-
ment efforts. Understanding current and future trends
in this field of practice will bring social work profes-
sionals closer to developing and applying culturally
competent best practice strategies. A current review
of literature pertinent to the profession contributes
evidence that may be used to improve end-of-life
(EOL) practice.
DIVERSITY AND CULTURAL COMPETENCE
NASW’s (2015b) Standards and Indicators for Cultural
Competence in Social Work Practice upholds that “cul-
turally competent social workers need to know the
limitations and strengths of current theories, pro-
cesses, and practice models, and which have specific
applicability and relevance to the service needs of
culturally, religiously, and spiritually multicultural
clientele” (p. 26). However, achieving cultural com-
petence is somewhat limited by the amount of liter-
ature that examines the role of various diversity
factors across social work fields of practice. Although
hospice and palliative care settings benefit from
research on some areas of difference, many diversity
subjects are not well represented in the literature
(Bullock, 2011; Doorenbos et al., 2010; LoPresti,
Dement, & Gold, 2016; NASW, 2015b; Schim &
Doorenbos, 2010; Witten, 2014). Furthermore,
government and private organizations who collect
and report characteristics of those receiving hospice
and palliative care often use narrow response catego-
ries that fail to capture the breadth and depth of
diversity among this population (Schim & Doorenbos,

2010; Witten, 2014). The concept of cultural com-
petence must appropriately parallel current and
future demographic trends by expanding its mean-
ing to include a broad definition of culture. It is not
enough to consider culture relegated to outdated
binary concepts such as African American or His-
panic in an era when a growing majority are a
unique combination of characteristics that cannot be
adequately captured in a checkbox. To be truly cul-
turally competent, a host of diversity characteristics
far beyond race and socioeconomic status (SES)
must be considered. Therefore, considering diversity
on a continuum is more realistic and reflective of the
actual people with whom social workers engage. A
starting point would be to include continuums of
race; SES; age; religion; spirituality; sexual orienta-
tion; gender identity and expression; national origin;
offender and incarceration status; refugee and immi-
grant status; veteran status; urban versus rural loca-
tion; health behaviors; health conditions including
diagnosis and prognosis; various developmental,
learning, physical, and psychological abilities by
diagnosis and functional level; family composition
and dynamics; and trauma history. Broadening
the concepts of culture and diversity and viewing
these abstractions as a range of possible characteris-
tics specific to each person is daunting to consider.
Cultural competence can easily be perceived as
overwhelming and impossible if presented with a
large range of client descriptors. However, if cul-
tural competence is considered as an ongoing area of
professional development, rather than a skill that is
learned once, then this goal becomes achievable.
NASW offers an operational definition of cultural
competence that reflects fluidity, intersectionality, syn-

thesis, reflection, and an other-oriented perspective
(NASW, 2015a, 2015b). This definition demon-
strates that cultural competence is a moving target, a
lifelong process, and a professional standard to
undertake. Furthermore, expectations of cultural
competence have long been rooted in the profession
within NASW’s (2017) Code of Ethics and the
person-in-environment framework (NASW, 2015a,
2015b); in essence, this endeavor is quite familiar yet
constantly evolving to meet challenges of the time.
HOSPICE AND PALLIATIVE CARE
How diversity is defined and how social workers
respond with cultural competence does not change
from one setting to another; however, some factors
may emerge as more significant than others due to
setting. As expected, health behaviors, medical con-
ditions, and diagnosis and prognoses may be the most
obvious presenting concerns often taking precedence
in hospice and palliative care settings. However, the
importance of diversity should not be underestimated
as these characteristics can significantly affect health-
related concerns, convey how some populations
respond to EOL care, and indicate underrepresented
groups in this setting (Bosma, Apland, & Kazanjian,
2010; Bosma, Johnston, et al., 2010; Bullock, 2011;
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Cagle, Pek, Clifford, Guralnik, & Zimmerman, 2015;

Cruz-Oliver et al., 2016; Demiris, Wittenberg-Lyles,
Parker Oliver, & Washington, 2011; Doorenbos
et al., 2010; Drisdom, 2013; LoPresti et al., 2016;
Lynch, 2013; Moore, 2015; Murty et al., 2015;
Schim & Doorenbos, 2010; Witten, 2014).
Definitions
Although herein the terms “hospice” and “palliative
care” are used collectively to represent an array of
EOL care options and distinctly when required for
accuracy, it is important to clarify each individually.
Although these terms often intersect, they have dis-
crete differences. Palliative care most often refers to an
array of services offered to individuals who have a
serious and possibly life-threatening illness with the
aim of relieving symptoms and side effects; these ser-
vices are not restricted to those who are dying.
Rather, palliative care addresses all areas of well -being
with the overarching goal of improving an indivi-
dual’s quality of life. These services are most often
covered, to varying degrees, by health insurance
including Medicare and Medicaid. While receiving
such services, individuals may also be seeking curative
and life-prolonging care (National Consensus Project,
n.d.). Hospice care comprises services provided in vari -
ous settings to those who are anticipated to live six
months or less and are not receiving life-prolonging
or curative treatments. Those accepting hospice care
also receive palliative care including support for indi -
vidual patients as well as their caregivers, which is sus-
tained after the death of a loved one (National
Hospice and Palliative Care Organization [NHPCO],
n.d.). In essence, all who receive hospice care also
benefit from palliative care while not all who receive
palliative care are eligible for hospice designation as
their prognosis and use of curative services may pre-

clude it. The majority of hospice care services are paid
for through the Medicare Hospice Benefit; this ac-
counts for slightly over 80 percent of all hospice reim-
bursements. A Medicaid Hospice Benefit is available
in many states for those who are eligible; approxi-
mately 5 percent of hospice costs are paid in this man-
ner. Last, private insurance accounts for about 8
percent of hospice recompense (Centers for Medicare
& Medicaid Services [CMS], n.d.). Herein, both hos-
pice and palliative care are explored to inform cul -
turally competent best practice in the overarching
area of EOL services provided by social workers in
various settings with the understanding that palliative
care occurs as a part of hospice care.
Demographics
Every state across the nation provides hospice care
with varying availability. Since the earliest hospice
program in 1974, numbers have increased to over
6,000 programs serving as many as 1.7 million pa-
tients and their families annually constituting the
inclusion of hospice care in approximately 44.6 per-
cent of all deaths (NHPCO, 2015). Primary medical
diagnosis of those receiving hospice care changes
with incidence of terminal disease; 36.6 percent are
cancer diagnoses, whereas 63.4 percent of diagnoses
are non–cancer related, with dementia, heart dis-
ease, lung disease, and stroke or coma constituting
the highest four respectively (NHPCO, 2015). Hos-
pice patients receive care in a variety of settings that
are intended to reflect a home environment; 2014
data reveal that 58.9 percent of those receiving hos-
pice services do so in their place of residence, which
may be a private home or long-term care setting;
the remainder receive care in a hospice-specific
facility or hospital. Demographic characteristics of

hospice patients in 2014 as per NHPCO reveal the
following composition: 53.7 percent female; 46.3
percent male; 84 percent age 65 or older; 41.1 per-
cent age 85 or older; 7.1 percent Hispanic or Latino
origin (reported separately from race as per U.S.
Census standards); 76 percent Caucasian; 13.1 per-
cent multiracial or other race; 7.6 percent African
American; 3.1 percent Asian, Hawaiian, or other
Pacific Islander; and 0.3 percent American Indian or
Alaskan Native (NHPCO, 2015). When compared
with U.S. Census Bureau (n.d.-a, n.d.-b) reports, it
is easy to see racial disparities among those served.
For example, 16.3 percent of the nation’s popu-
lation is Hispanic or Latino (U.S. Census Bureau,
n.d.-a), yet that group has a hospice usage rate of
7.1 percent among the 44.6 percent of all hospice
users. In part, differences can be explained by cul-
tural preferences that are at odds with how hospice
services are provided. Specifically, Hispanic popula-
tions tend to favor family-centered decision making
and indirect communication about the dying pro-
cess so as not to cause harm, whereas hospice ser-
vices often use a patient-centered approach and
include frank discussions of death (Cruz-Oliver
et al., 2016).
The focus is to inform culturally competent best
practice by understanding current and future trends
among hospice and palliative care constituents;
however, as available demographic data demon-
strate, the complexity and scope of diversity fails to
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be adequately captured. Although this informatio n
provides a general sense of those served, it is lacking
in detail. For instance, gender response categories
are binary in nature, limited to indicating one
choice of either male or female. The simple addition
of “other” or “check all that apply” options would
significantly improve applicability and inclusion. In
a world where Facebook has offered users 71 gender
options since 2014 (Wong, 2016), it seems that
principal data sources regarding hospice and pallia-
tive care could be more inclusive, current, and rigor-
ous. The mismatch between diversity characteristics
captured by data and the actual cultural differences
of those receiving services has been noted as a con-
cern (Schim & Doorenbos, 2010; Witten, 2014).
The consequences threaten to further solidify incor-
rect assumptions, neglect multicultural identities and
acculturation, and discount varied levels of impor-
tance that individuals may place on their culture
(Bosma, Apland, & Kazanjian, 2010).
Data Sources
Data and demographic information on those receiv-
ing palliative and hospice care in the United States
have many sources, some of which are federally
mandated and others that are not. Recently, new
requirements for the former were initiated by the
Patient Protection and Affordable Care Act of 2010
(P.L. 111-148), which requires participation in the
Hospice Quality Reporting Program (HQRP) com-
prising two compulsory measures developed by
CMS. These methods include the Hospice Item Set

(HIS) for patient-level data compiled by service pro-
viders and the Consumer Assessment of Healthcare
Providers and Systems (CAHPS) administered to
families or caregivers after patient death to assess their
experiences with care (CMS, n.d.). Both of HQRP’s
measures are limited in their ability to capture diver-
sity factors. For example, both the HIS and CAHPS
contain one item titled “Race/Ethnicity” that com-
prises six discrete categories wherein “Hispanic or
Latino” is an option; this shows less sensitivity than
the U.S. Census metric in which Hispanic original is
asked separately to distinguish between heritage or
nationality versus race (CMS, n.d.). As referenced
previously, a primary resource for voluntary hospice
and palliative care data is the NHPCO, which is the
principal professional nonprofit membership group
in the country promoting quality of life through
excellence in EOL care. NHPCO collects data
through its National Data Set survey, which covers
a variety of items related to hospice care including a
limited amount of demographic items reported ear-
lier (NHPCO, 2015).
However, an overall lack of information persists
about individuals receiving care who can be charac-
terized by diversity factors outside of those cited.
Unknown numbers of individuals possessing attri-
butes that may vitally affect hospice and palliative
care efforts remain completely invisible due to the
lack of inclusiveness in large-scale data sources. This
information does not appear to exist within report-
ing requirements and academic literature alike
(Hasnain-Wynia & Baker, 2006; Schim & Doorenbos,
2010; Weech-Maldonado et al., 2012; Witten, 2014).
Best practice suggests that systematically collecting

data using culturally sensitive instruments can reduce
health disparities and ensure patient-centered care
(Hasnain-Wynia & Baker, 2006; Weech-Maldonado
et al., 2012). Many culturally sensitive assessment
models exist and are used with differing prevalence;
assessment tools exclusively pertinent to distinct po-
pulations are also available to a varying degree
(Hasnain-Wynia & Baker, 2006; Schim & Doorenbos,
2010; Weech-Maldonado et al., 2012; Witten,
2014). Among more globally applicable assessment
models, two are prominent. First, the ABCDE Cul-
tural Assessment Model (Kagawa-Singer & Blackwell,
2001) assesses levels of cultural adherence in at-
tempts to improve communication and decrease
stereotyping through five dimensions: attitudes, be-
liefs, context, decision-making style, and environment.
The second multifaceted assessment is the Transcultural
Assessment Model (Giger & Davidhizar, 2002), which
was developed almost 30 years ago but has been up-
dated several times to ensure its continued applica-
bility. This model focuses on uniqueness of the
individual and assesses dimensions of communica-
tion, space, social organization, time, environmental
control, and biological variations.
Overall, the use of comprehensive assessments that
capture a range of diversity factors and their perceived
importance can improve service delivery and patient
outcomes (Bosma, Apland, & Kazanjian, 2010; Cruz-
Oliver et al., 2016; LoPresti et al., 2016). The use of
more sensitive assessments and the resulting data can
help social work professionals develop a basis for
best practice that is cognizant of the complex cul-
tural identities of those served in EOL settings. Like-
wise, more research specific to hospice and palliative
care is needed to undergird this area of professional

social work practice. Research is needed to inform
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why and how culture is important in relation to
family and patient engagement, assessment, service
delivery, intervention outcomes, and overall satisfac-
tion with services provided. Both inclusive assess-
ment tools and increased research are paramount to
developing best practice for EOL care.
TRENDS
Although current national data provide limited insight,
support for the importance of developing culturally
competent best practice in hospice and palliative care
settings is evident in academic literature. Material that
explores cultural competence within this area of prac-
tice is dwarfed by articles focusing on the experiences
of specific populations by diversity factor or diagnosis.
Yet, literature from a broader perspective is useful in
establishing a sense of the knowledge base within the
subject matter and provides a foundation for more
narrowly focused contributions. Of particular use-
fulness is a value-based model that provides a wide-
ranging approach to diversity considerations in
EOL care. This model suggests that understanding
cultural value distinctions on a continuum of individ-
ualism to collectivism, independence to interdepen-
dence, and self-reliance to interconnectedness may
be at the crux of differences seen across populations

and indicators. To illustrate, white Americans and
African Americans tend to emerge on opposite ends
of the spectrum on each of these values. These dif-
ferences affect the likelihood of completing advance
directives, family inclusiveness in decision making,
and overall view of hospice care (Bullock, 2011).
Therefore, value orientations can play an important
role in informing best practice in hospice and pallia-
tive care settings. This is supported by findings that
indicate care choices during EOL are often more
dependent on ethnicity and culture rather than other
demographic characteristics such as age and SES
(Bosma, Apland, & Kazanjian, 2010).
The impact of culture is shown to go beyond med-
ical decision making to also influence verbal interac-
tions, reactions to medical conditions, and affective
characteristics (Bosma, Apland, & Kazanjian, 2010).
Likewise, service delivery is a major area of consider-
ation; inattentiveness to patient’s cultural factors is
shown to result in substandard levels of hospice and
palliative care treatment, unequal access to services,
disproportionate usage rates, and a wide range of
other disparate outcomes (Bosma, Apland, & Kazan-
jian, 2010; Cruz-Oliver et al., 2016; LoPresti et al.,
2016). However, data are not available in this regard
on all ethnic and cultural groups; in particular, indig-
enous populations are greatly underrepresented in
the literature (Moore, 2015). Not surprisingly,
access and utilization differences have the ability
to affect health conditions, pain management, and
location of death (Bosma, Apland, & Kazanjian,
2010); collectively, these consequences may negate
the primary goals of palliative care. These findings
are especially impactful as care providers, patients,

and their families are likely to encounter height-
ened diversity distinctions at the end of the life
cycle due to the cultural significance of mortality
(Agnew et al., 2011; Bosma, Apland, & Kazanjian,
2010; Bullock, 2011).
Whereas some diverse populations are repre-
sented in current literature, others are not. Regard-
less, findings specific to particular populations in this
decade have increased awareness of diversity differ -
ences among those receiving hospice and palliative
care and those who underuse these services. To
illustrate, a brief review of current literature that
focuses on the experiences of specific populations
by diversity factor follows.
Although a good deal of research and program
effort has emerged to increase cultural competence
with African Americans, this population remains the
least likely to use hospice services even though a
greater need for such is noted. Among the reasons
for these findings are a general lack of adequate
knowledge about services, values that oppose the
nature of services, and subsequent preference for
aggressive curative treatments (LoPresti et al., 2016).
Consequently, these outcomes perpetuate one another
given that a lack of accurate information about varied
EOL options can leave African American populations
with less support and the inability to make informed
choices for care (Drisdom, 2013). Due to value or-
ientations, the terms “hospice” and “palliative” have
become problematic as they have grown to connote
ideas that may be contrary to individual beliefs. For
instance, “hospice” can be internalized as “giving up”
(Drisdom, 2013). Therefore, best practice suggests
that the use of different terminology may help to

negate some racial disparities.
Hispanic Americans and African Americans share
some similarities among hospice indicators in rela-
tion to value distinctions and religious and spiritual
beliefs. For example, both groups are less likely than
others to complete advance directive documents for
religious reasons (LoPresti et al., 2016). A good deal
of current literature examines the experiences of
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Hispanic populations; however, diversity within
these Hispanic populations is not addressed. Regard-
less, findings indicate that Hispanic populations expe-
rience low rates of service usage and are less likely to
experience “good death,” which includes features
such as having one’s wishes followed, service pro-
vider ability to manage pain and reduce stress and
anxiety, attention to nonmedical needs, active pro-
vider involvement, possessing accurate knowledge,
and perceiving compassion (Cagle et al., 2015). In
response to these shortcomings, support for best prac-
tice can be found in various intervention models. For
example, to better support a good death, implemen-
tation of culturally sensitive case-based intervention
shows improvement in the level of knowledge and
overall attitudes about hospice and palliative care ser -
vices (Cruz-Oliver et al., 2016). Similarly, the well-
being of Hispanic caregivers shows improvement

through a psychoeducational problem-solving skills
intervention that supports collectivistic cultural val -
ues (Demiris et al., 2011).
Encouraging a broadening of diversity character-
istics outside of ethnic and racial factors, there is
some limited literature concerning populations that
are now likely to enter hospice and palliative care
settings in higher numbers or perhaps for the first
time. Among these are methadone patients. At this
time, patients entering methadone programs are
more likely to be between 50 and 70 years of age
than ever before; this trend is expected to increase
and requires increased attention and culturally com-
petent responses. Significant concerns that affect
EOL care for this population include a host of pro-
gressively life-threatening comorbid medical condi-
tions. Culturally competent best practice among this
group calls attention to treatment planning that pro-
motes not only health management and quality of
life, but also a biopsychosocial approach that ad-
dresses a multitude of problems related to opioid
dependence through a palliative care philosophy
(Doukas, 2014).
Prison inmates in the United States who receive
hospice and palliative care services present new
challenges for social workers and the correctional
facilities where they are delivered. Currently, incar-
cerated individuals over the age of 55, which is con-
sidered elderly as this population is clinically10 years
ahead of those not incarcerated, constitute the fastest
growing demographic group within the nation’s
prison systems (Supiano, Cloyes, & Berry, 2014).
By 2030 it is estimated that individuals over 55 years

of age will comprise one-third of all incarcerated peo-
ple (Osborne Association, 2014). Data updated on
June 25, 2016, by the Federal Bureau of Prisons esti-
mate that 19,683 inmates (10.2 percent) in federal
prisons are over age 55. State data differ greatly and
are not as current; as of 2013, 131,500 or 10 percent
of all inmates of state prison systems were age 55 or
over (Carson & Sabol, 2016). However, some states
such as Virginia report that 20 percent of their state
inmates are 55 or over (Ollove, 2016). Although
most states are burdened by the cost of providing
services related to aging, they vary considerably as to
the manner in which they choose to meet their in-
mates’ needs. Some have instituted “compassionate
release” or “geriatric conditional release” programs
where state laws allow; others provide aging and
EOL care within their correctional facilities. This
setting presents best practice challenges related to
strict boundary structures that do not match well
with the fundamental tenets of hospice and palliative
care (Carson & Sabol, 2016). Social workers deliver-
ing services in prison settings are confronted with the
need to support patient and worker relationships
appropriate for the work at hand, while carefully
negotiating professionalism within a multidisciplin-
ary team (Supiano et al., 2014).
Individuals who identify as transgender express
worry over their EOL prospects yet are poorly
equipped for these considerations due to poor re-
lationships with health care systems marred by
discriminatory and often traumatizing practices
(Witten, 2014). Overall, this population continues
to receive little positive public attention, remain
underrepresented among research studies, experi-
ence disparate medical care, and endure discrimina-

tion. A simple Web search of “transgender and
hospice” surprisingly delivers no applicable results.
Nonetheless, knowledge about these individuals
would be invaluable for hospice and palliative care
settings based on population estimates alone. For
example, approximately 1.4 million people in the
United States identify as transgender (Flores et al.,
2016), yet there is little research about this popula-
tion as they age or around EOL issues (Witten,
2014). Furthermore, long-standing and far-
reaching marginalization experienced by transgender
individuals results in trauma reactions to various
health care and service providers, which further chal -
lenge the provision of appropriate hospice and pallia-
tive care services (Witten, 2014). Although research
about transgender EOL concerns is lacking, a large
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study of lesbian, gay, bisexual, and transgender older
adults may shed some light on the topic. Study find-
ings among this population indicate that 44 percent
live alone compared with 18 percent of the general
population; over 50 percent report the loss of close
personal relationships due to gender identity; and,
perhaps most striking, 48 percent depression rates are
reported compared with 5 percent among older adult
heterosexuals (Fredriksen-Goldsen, Kim, & Goldsen,
2011). It is suggested that increased cultural com-
petence is greatly needed for successful work with

transgender populations later in life; areas for
increased attention to best practice is suggested at
all levels including practitioners, agencies, facilities,
religious and spiritual groups, and legal consult
(Witten, 2014).
Last, rural geographic residence of those seeking
EOL care bring distinct challenges to service provi-
sion and outcomes for patients and families. In these
settings, proximal access to adequate hospice and
palliative care services are of concern as location can
affect the amount of services available, shortages of
professionals to provide various services, the ability
of health care providers to facilitate quick referrals
and admissions, capacity to attract and retain profes-
sionals with appropriate educational backgrounds
and training, and presenting cultural differences par-
ticular to rural settings. Overall, rural areas have
fewer hospice providers resulting in potentially greater
proximal distances for patients, caregivers, families,
and provider staff to negotiate. Greater distances,
coupled with less available public transportation, can
often be a significant barrier to services. Best practice
recommendations look to novel hospice and pallia-
tive care delivery models such as telehealth, provider
training, and changes to Medicare Hospice Benefits,
which can improve EOL care in rural areas (Lynch,
2013).
DIRECTIONS FOR SOCIAL WORK
The importance of culturally competent best practice
in hospice and palliative care settings is far-reaching
given the ever-growing range of diversity characteris-
tics and a marked increase of aging populations in the
United States. The administrative reports, govern-
ment data, academic literature, professional standards,

and assessment tools discussed are a starting point to
advance culturally competent practice guidelines for
EOL care. However, this goal remains challenging
because the numbers and needs of individuals posses-
sing particular diversity characteristics remain largely
unknown. Although pertinent literature identified
numerous shortcomings, strategies to develop empir-
ically supported culturally competent practices are
suggested. NASW Standards and Indicators for Cultural
Competence in Social Work Practice (2015b) and NASW
Standards for Palliative and End of Life Care (2004) pro-
vide a foundation for appreciating the intersectional -
ity of diversity factors in the context of EOL settings.
This is a good place to start to formulate directions
for the future as these standards bear on the develop-
ment of best practice. Specifically, NASW (2004)
cautions that “culture influences individuals’ and
families’ experience as well as the experience of the
practitioner and institution. Social workers should
consider culture in practice settings involving pallia-
tive and end of life care” (p. 26). This points to the
importance of understanding the interdependent and
overlapping nature of multifaceted cultural dimen-
sions and their impact on various EOL concerns as
experienced by each individual and family member.
It is further suggested that practice competence can
help to properly prepare professionals for individual -
ized client-centered care that can more effectively
and positively affect psychological distress, pain, and
the dying process for both individuals and families.
Recommendations for practitioners include con-
tinuing education and training, specialization and
certification programs, engagement in research, and
appropriate use of supervision and community ex-
perts; support from all available resources is needed

to keep up with the demands of this field of work
(NASW, 2004).
In sum, recommendations for more accurate and
inclusive data, the use of professional standards, and
practitioner knowledge and skill acquisition place
the onus on social workers to achieve cultural com-
petence. However, awareness and familiarity with
various areas of difference may not adequately pre-
pare social workers for diversity in hospice and palli-
ative care. The cultural competence approach lacks
attention to reciprocal personal and professional
reflection and cognizance of the complex structural
forces that form client experiences. To advance prac-
tice, a cultural humility approach offers social workers
a deeper way to understand and respond to cul-
tural differences of others as well as themselves. Sim-
ply defined, cultural humility is a “process of committing
to an ongoing relationship with patients, communities,
and colleagues that requires humility as individuals
continually engage in self-reflection and self-critique”
(Fisher-Borne, Montana Cain, & Martin, 2015,
on 09 February 2018
p. 171). Applied to diversity in the context of EOL
care, cultural humility can ease the burden on social
workers to attain competence as a discrete goal by
instead actively participating in a continual process
with clients, constituencies and institutions, and within

themselves. HSW
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Christine M. Rine, PhD, is assistant professor, Department of
Social Work, Edinboro University of Pennsylvania, 235 Scot-
land Road, Hendricks Hall G-37, Edinboro, PA 16444;
e-mail: [email protected]
Original manuscript received August 1, 2016
Final revision received December 21, 2016
Editorial decision February 9, 2017
Accepted February 9, 2017
Advance Access Publication December 13, 2017
on 09 February 2018
Copyright of Health & Social Work is the property of Oxford
University Press / USA and its

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may print, download, or email
articles for individual use.
Responding to the social problems that affect the populations
you serve as a social worker is only one aspect of the
professional responsibility you must undertake. The ability to
be proactive by identifying disparities and gaps in policies is
just as important. However, in order to be an effective advocate
and to fully participate in the policy process, it is important that
you be able to connect theory and research to policy-making
decisions. Having the knowledge and skills to implement new
policies and policy alternatives without creating new disparities
is a skill all social workers need to possess.
For this Assignment, consider what you have learned about the
possible causes of the social problem you selected.
By Day 7
Assignment (2–4 pages, APA format): Your paper should
include:
· A description of the known explanations or causes of the issue
you selected in your Social Issues paper in Week 3
· A description of the theoretical explanations and approaches
scholars and policy analysts used to discuss this issue
· A description of the policies that have resulted from these
discussions and an explanation of whether they are effective at
resolving the issue
Support your Assignment with specific references to the
resources. Be sure to provide full APA citations for your
references.

6Analyzing Social Problems and Social Policy: Mental illnesses
Name of Student
Institutional Affiliation
Course Name and Number
Professor
Due Date
Analyzing Social Problems and Social Policy: Mental
illnessesDescription and causes Within modern society, mental
health illness is one of the most effective problems exper ienced
by most people. Mental health refers to behavioral, cognitive,
and emotional well-being. Mental illness thus refers to a
condition that affects an individual’s feelings, mood, thinking,
and behaviors. Some of the most common mental illnesses
include anxiety, major bipolar disorder, depression, psychosis,
schizophrenia, and trauma.Several factors usually bring about
mental health challenges. One of the main factors leading to
mental health challenges is substance abuse. According to a
study by Smith et al. (2017), there is a high correlation between
substance use and mental health challenges. Thus, substance use
could be used as a predictor of mental illnesses. Additionally,
early adverse life experiences, for example, exposure to
violence and sexual assault, could lead to mental illnesses.
Duin et al. (2018) support this view, who conducted empirical
research on the role of adverse childhood experiences on mental
health and found a positive relationship between the two
variables.Mental illnesses in society
According to the CDC (2021), 1 in 25 American citizens live
with serious mental challenges including bipolar disorder,
schizophrenia, or a major depression. Additionally,1in every 5

American adults are diagnosed with at least one mental illness
in any given year. The statistics indicate the high prevalence of
mental health issues within modern society, hence why it is one
of the main focus areas of social workers.Risk PopulationThe
issue of mental illness is typically experienced across the
demographic scope affecting people of all ages and races.
However, mental health issues are highly diverse along racial
lines whereby adults exhibiting two or more races experience
31.7% prevalence compared to white adults with 22.2%
(National Institute of Mental Health (NIH), 2019). This statistic
indicates the prevalence of risk factors within the minority
communities compared to the white ethnic groups. Some of the
risk factors include disparities that come with racism, including
poor access to quality mental health care and other social-
economic constraints (McKnight, 2021).Theories of Mental
health
Some of the most effective theories used in explaining mental
health issues include behaviorism, biological, cognitive,
humanistic, and psychodynamic theories. Behaviorism theorists
believe that life experiences manifest behaviors; for example,
Freud's theory suggests that the body undergoes several
psychosexual stages. On the other hand, psychodynamic
theories focus on the driving forces within individuals that
motivate their behavior. An example is Erik Erikson’s theory
which analyzes an individual’s growth through eight stages in
exploring deficiencies in their behavior. On the other hand,
cognitive theories emphasize that behaviors are shaped by
attitudes, behaviors, and beliefs of individuals. An example of a
cognitive theory includes Piaget's developmental theory and
social-cultural cognitive theory.
The most common method applied by scholars in assessing and
treating mental health issues involves therapy, whereby a
counselor tries to evaluate the origin of the problem and its
prevalence within society. One of the approaches undertaken by
the government consists of the development of policies under
the Affordable Care Policy (ACA) to promote accessibility and

health-seeking behavior of people experiencing mental health
issues. An example of such a policy is the accessibility of
healthcare to as long as somebody has insurance coverage.
According to Thomas et al. (2017), there have been positive
results in the mental well-being of U.S citizens ever since the
introduction of the policy. The improvement in mental well -
being reflects the significance of accessibility as an approach
towards solving mental health issues.
References
CDC. (2021, December). Learn about mental health. Centers for
Disease Control and
Prevention. https://www.cdc.gov/mentalhealth/learn/index.htm
McKnight-Eily, L. R., Okoro, C. A., Strine, T. W.,
Verlenden, J., Hollis, N. D., Njai, R., Mitchell, E. W.,
Board, A., Puddy, R., & Thomas, C. (2021). Racial and ethnic
disparities in the prevalence of stress and worry, mental health
conditions, and increased substance use among adults during the
COVID-19 pandemic — United States, April and May
2020. MMWR. Morbidity and Mortality Weekly Report, 70(5),
162-166. https://doi.org/10.15585/mmwr.mm7005a3
National Institute of Mental Health (NIH). (2019). Mental
Illness. NIMH »
Home. https://www.nimh.nih.gov/health/statistics/mental-illness
Smith, L. L., Yan, F., Charles, M., Mohiuddin, K., Tyus, D.,
Adekeye, O., & Holden, K. B. (2017). Exploring the link
between substance use and mental health status: What can we
learn from the self-medication theory? Journal of Health Care
for the Poor and Underserved, 28(2S), 113-
131. https://doi.org/10.1353/hpu.2017.0056
Thomas, K. C., Shartzer, A., Kurth, N. K., & Hall, J. P. (2017).
Impact of ACA health reforms for people with mental health
conditions. Psychiatric Services, 69(2), 231-
234. https://doi.org/10.1176/appi.ps.201700044
Van Duin, L., Bevaart, F., Zijlmans, J., Luijks, M. A.,
Doreleijers, T. A., Wierdsma, A. I., Oldehinkel, A. J.,

Marhe, R., & Popma, A. (2018). The role of adverse childhood
experiences and mental health care use in psychological
dysfunction of male multi-problem young adults. European
Child & Adolescent Psychiatry, 28(8), 1065-
1078. https://doi.org/10.1007/s00787-018-1263-4
Discussion - Week 6
Top of Form
Discussion: Perspectives on the Aging Process
You may be familiar with the phrases, “You’re only as old as
you feel” and “age is nothing but a number.” To what extent do
you believe these common sayings? Do you see yourself as
younger or older than your biological age? And what are your
views on the aging process—is it something to be avoided and
feared, or celebrated?
As individuals grow older, they experience biological changes,
but how they experience those changes varies considerably.
Someone who is particularly fit at 70, for example, might
perceive themselves to be in their 50s. And someone who has
dealt with significant hardship and ailing health who is 70
might feel like they are in their 80s. Aging adults’ experiences
are influenced not only by how they feel but also by how an
older adult should look or should act, according to societal
norms and stereotypes.
In this Discussion you examine biological aspects of later
adulthood, and how these aspects intersect with psychological
and social domains. You also consider your own views on aging
and how they might impact your work with older clients.
To Prepare:
· Review the Learning Resources on biological aspects of later
adulthood and the aging process. Identify the biological changes

that occur at this life stage.
· Consider your thoughts and experiences related to the aging
process and people who are in later adulthood.
By 01/4/2022Describe two to three biological changes that
occur in later adulthood, and explain how the social
environment influences them. Then explain how these biological
changes could affect the psychological and social domains.
Finally, reflect on your own thoughts, perspectives, and
experiences related to the aging process. How might these
perspectives impact your work with older adults?
Bottom of Form
Required Readings
Zastrow, C. H., Kirst-Ashman, K. K., & Hessenauer, S. L.
(2019). Understanding human behavior and the social
environment (11th ed.). Cengage Learning.
· Chapter 14, "Biological Aspects of Later Adulthood" (pp.
642–671)
Chapter Review:
Chapter Summary The following summarizes this chapter’s
content as it relates to the learning objectives presented at the
beginning of the chapter. Chapter content will help prepare
students to:
LO 1 Define later adulthood. Later adulthood begins at around
age 65. This grouping is an extremely diverse one, spanning an
age range of more than 30 years.
LO 2 Describe the physiological and mental changes that occur
in later adulthood. Later adulthood is an age of recompense, a
time when people reap the consequences of the kind of
life they have lived. The process of aging affects dif-ferent
persons at different rates. Nature appears to have a built-in
mechanism that promotes aging, but it is not known what this
mechanism is.
LO 3 Understand contemporary theories on the causes of the
aging process. Theories on the causes of aging can be grouped

into three categories: genetic theories, nongenetic cellular
theories, and physiological theories. Various factors accelerate
the aging process: poor
diet, overwork, alcohol or drug abuse, prolonged ill-nesses,
severe disabilities, prolonged stress, negative thinking,
exposure to prolonged hot or cold condi-tions, and serious
emotional problems. Factors that slow down the aging process
include a proper diet, skill in relaxing and managing stress,
being physi-cally and mentally active, a positive outlook on
life, and learning how to control unwanted emotions.
LO 4 Describe common diseases and major causes of death
among older adults. Older people are much more susceptible to
physical illnesses than are younger people, yet many older
people are reasonably healthy. The two leading causes of death
are diseases of the heart and cancer. Alzheimer’s disease affects
many older adults.
LO 5 Understand the importance of placing the highest priority
on self-care. Everyone (young, middle age, and older) should
place a high priority on self-care. If social workers do not care
for themselves, their ability to care for others will be sharply
diminished or even depleted. Significantly, the intervention
strategies that social workers should use for self-care are also
precisely the strategies that social workers should convey to
their clients so that these clients can improve their lives.
Everyone needs physical exercise, mental activity,
a healthy sleep pattern, proper nutrition and diet, and to use
quality stress management strategies. Three constructive stress
management approaches
are (1) changing the distressing event, (2) chang-ing one’s
thinking about the distressing event, and (3) taking one’s mind
off the distressing event, usu-ally by thinking about something
else. The chapter ends with a discussion of the effects
of stress, and describes a variety of stress manage-ment
techniques.
COMPETENCY NOTES The following identifies where
Educational Policy (EP) competencies and behaviors are

discussed in the chapter.
EP 6a. Apply knowledge of human behavior and the social
environment, person-in-environment, and other
multidisciplinary theoretical frameworks to engage with clients
and constituencies
EP 7b. Apply knowledge of human behavior and the social
environment, person-in-environment and other multidisciplinary
theoretical frameworks in the analysis of assessment data from
clients and constituencies. (All of this chapter.) The content of
this chapter is focused on social work students acquiring both of
these behaviors in work-ing with older persons.
EP 8b. Apply knowledge of human behavior and the social
environment, person-in-environment, and other
multidisciplinary theoretical frameworks in interventions with
clients and constituencies (pp. 658–670). Material is presented
on self-care interventions that social workers should use in their
daily lives to care for themselves. These interventions should
also be used by social workers to improve the lives of their
clients.
EP 1 Demonstrate Ethical and Professional Behavior (pp. 646,
649, 653, 657) Ethical questions are posed.
WEB RESOURCES
See this text’s companion website at www.cengagebrain.com for
learning tools such as chapter quizzes, videos, and more.
Copyright
Nelson, T. D. (2016). Promoting healthy aging by confronting
ageism. American Psychologist, 71(4), 276–282
Ricks-Aherne, E. S., Wallace, C. L., & Kusmaul, N. (2020).
Practice considerations for trauma-informed care at end of
life. Journal of Social Work in End-of-Life and Palliative
Care, 16(4), 313–329.
https://doi.org/10.1080/15524256.2020.1819939

Rine, C. M. (2018). Is social work prepared for diversity in
hospice and palliative care? Health and Social Work, 43(1), 41–
50. https://doi.org/10.1093/hsw/hlx048
Required Media: Meet Ray: Age 41 to 68 Time Estimate: 2
minutes
Follow Rubric
Initial Posting: Content: 14.85 (49.5%) - 16.5 (55%)
Initial posting thoroughly responds to all parts of the
Discussion prompt. Posting demonstrates excellent
understanding of the material presented in the Learning
Resources, as well as ability to apply the material. Posting
demonstrates exemplary critical thinking and reflection, as well
as analysis of the weekly Learning Resources. Specific and
relevant examples and evidence from at least two of the
Learning Resources and other scholarly sources are used to
substantiate the argument or viewpoint.
Readability of Postings: 5.4 (18%) - 6 (20%)
Initial and response posts are clear and coherent. Few if any
(less than 2) writing errors are made. Student writes with
exemplary grammar, sentence structure, and punctuation to
convey their message.
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Practice Considerations for Trauma-Informed Care
at End of Life
Elizabeth S. Ricks-Aherne, Cara L. Wallace & Nancy Kusmaul
To cite this article: Elizabeth S. Ricks-Aherne, Cara L. Wallace
& Nancy Kusmaul (2020) Practice
Considerations for Trauma-Informed Care at End of Life,
Journal of Social Work in End-of-Life &
Palliative Care, 16:4, 313-329, DOI:
10.1080/15524256.2020.1819939
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Practice Considerations for Trauma-Informed Care at
End of Life
Elizabeth S. Ricks-Ahernea , Cara L. Wallacea , and Nancy
Kusmaulb
aSchool of Social Work, College for Public Health and Social
Justice, Saint Louis University, St.
Louis, Missouri, USA; bSchool of Social Work, University of
Maryland Baltimore County, Baltimore,
Maryland, USA
ABSTRACT
Trauma is widespread, and its symptoms can adversely impact
wellbeing at end of life, a time when hospice seeks to maxi-
mize quality of life. This article reviews research on trauma at
end of life, provides an overview of trauma-informed princi-
ples, and explores possibilities for applying trauma-informed

care through an illustrative case study of a patient at end of
life. The case discussion applies findings from the literature
using Feldman’s Stepwise Psychosocial Palliative Care model
as a roadmap. As shown in the case study, trauma-related
symptoms may complicate care, making it an important sub-
ject of clinical attention for interdisciplinary hospice team
members. As part of this team, social workers are particularly
well suited to provide more targeted interventions where indi -
cated, though all members of the team should take a trauma-
informed approach. Lastly, this article reflects on the need for
organizations to take a systems-level approach when imple-
menting trauma-informed care and suggests implications for
practice through a universal approach to trauma and the
need for trauma-specific assessments and interventions at
end-of-life, along with areas for future research.
KEYWORDS
Hospice; palliative care;
social work; trauma
Patients at end of life are more likely than the general
population to have
experienced trauma either in their past or more recently, due to
medical
interventions and other experiences related to their life-limiting
diagnosis
(Ganzel, 2018). The risk for having been exposed to at least one
traumatic
event increases with age, as does the probability that a person
may experi-
ence multiple traumatic events (Ramsey-Klawsnik & Miller,
2017), making
trauma an important potential factor for older adults and people
at end of
life. Older adults (age 65 or older) constitute approximately
80% of hospice

patients and estimates show that about 70–90% of people in this
age range
have experienced a prior traumatic event (Ganzel, 2018).
Unmitigated
trauma-related symptoms of intrusion, avoidance, negative
alterations in
CONTACT Cara L. Wallace [email protected] School of Social
Work, College for Public Health and
Social Justice, Saint Louis University, St. Louis, Missouri 3550,
USA.
� 2020 Taylor & Francis Group, LLC
JOURNAL OF SOCIAL WORK IN END-OF-LIFE &
PALLIATIVE CARE
2020, VOL. 16, NO. 4, 313–329
https://doi.org/10.1080/15524256.2020.1819939
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cognitions and mood, and hyperarousal can adversely impact
what many
people consider a “good death” (Feldman, 2011). These trauma
symptoms
might result in reduced social supports, challenges in
communication with
and trust of healthcare providers, complications in the process
of life
review, barriers to acceptance of death, increased emotional
distress, exacer-

bation of pain symptoms, and decreased overall well-being
(Feldman, 2011;
Ganzel, 2018).
Given how common traumatic experiences are across the human
life
course and the negative impacts that trauma-related symptoms
can have at
end of life, social workers should be trained in trauma-informed
approaches, trauma assessment, and trauma intervention
(Levenson, 2017;
Strand et al., 2014). This paper adds to literature by
establishing trauma as
a clinical consideration at end of life. Though it is not practical
to expect
that hospice workers will all become trauma experts,
understanding a
trauma-informed approach (described in greater depth below) in
this set-
ting is particularly important and will allow them to respond to
trauma-
related distress that may arise at end of life. Hospice and
palliative care
organizations are generally trained in providing team-based,
person-cen-
tered care, making them well positioned to provide generalist,
trauma-
informed care. Following a review of literature, definition of
trauma, and
description of trauma-informed care, this article applies current
knowledge
to an illustrative case example (based on a real case with names
and identi-
fying details changed to protect privacy), followed by a
discussion of prac-
tice implications. Additionally, this article provides insights

from other care
settings where a trauma-informed perspective is already being
used.
What is trauma?
Definitions of trauma vary in scope. The U.S. Substance Abuse
and Mental
Health Services Administration (SAMHSA, 2019), describes
trauma as “an
event, series of events, or set of circumstances that is
experienced by an
individual as physically or emotionally harmful or life
threatening and that
has lasting adverse effects on the individual’s functioning and
mental, phys-
ical, social, emotional, or spiritual well-being." This definition
includes but
is not limited to full-threshold post-traumatic stress disorder
(PTSD). This
is important because, among older adults, the presence of sub-
syndromal
trauma-related symptoms may adversely impact quality of life,
with some
literature raising the question of using a lower diagnostic
criteria threshold
for PTSD in older adults (Reynolds, Pietrzak, Mackenzie, Chou,
& Sareen,
2016). Furthermore, each person’s perspective on a trauma
experience is
subjective, and their coping thresholds are unique (Ramsey-
Klawsnik &
Miller, 2017).
314 E. S. RICKS-AHERNE ET AL.

The expression of trauma-related symptoms varies over the life
course
and can include delayed onset symptoms, symptom remission,
symptom
recurrence, and symptom exacerbation (American Psychiatric
Association
(APA), 2013). Experiences common among older adults and
those at end
of life, such as shifts in physical or mental health and cognitive
impair-
ment, are often associated with symptom variation (APA, 2013;
Davison
et al., 2016; Feldman, Sorocco, & Bratkovich, 2014; Glick,
Cook, Moye, &
Kaiser, 2018; Hiskey, Luckie, Davies, & Brewin, 2008;
Reynolds et al.,
2016). Not all people who experience traumatic events
necessarily
develop PTSD, with lifetime incidence in the United States
estimated to be
8–9% (American Psychiatric Association, 2013). Even trauma-
related symp-
toms that do not meet PTSD diagnostic criteria can cause
clinically signifi-
cant distress, adversely impacting quality of life and ability to
receive
healthcare in later life and at end of life (Feldman, 2017;
Ganzel, 2018;
Glick et al., 2018; Kusmaul & Anderson, 2018; Osei-Boamah,
Pilkins, &
Gambert, 2013).
Yet not all difficult events in a person’s life should necessarily
be viewed

as trauma. In particular, the death of someone significant may
lead to
bereavement (APA, 2013). However, if the death event itself
was traumatic,
trauma and/or persistent complex bereavement may co-occur
(APA, 2013).
They have similar symptoms, including avoidance and intrusive
thoughts,
and can be difficult to differentiate (APA, 2013). Unlike PTSD,
persistent
complex bereavement includes “preoccupation with the loss and
yearning
for the deceased” (APA, 2013). Additionally, some distress at
end of life
may be unrelated to loss or trauma. However, end-of-life
constraints such
as limited time and patient energy may make differential
diagnosis between
trauma, complex bereavement, and other distress impractical.
For this rea-
son, the authors recommend using a universal precautions
approach within
the hospice and other end-of-life settings.
Principles of trauma-informed care
SAMHSA’s trauma-informed care guidelines provide a roadmap
for agen-
cies that do not provide trauma-specific services. According to
SAMHSA
(2014), trauma-informed organizations have a basic
understanding of the
impacts of trauma, recognizes its signs, and responds using
trauma-
informed approaches across the organization, actively avoiding
re-trauma-

tization. There are six principles to providing trauma-informed
care: safety;
trustworthiness and transparency; peer support; collaboration
and mutual-
ity; empowerment, voice, and choice; and cultural, historical,
and gender
issues (SAMHSA, 2014). Organizations should ensure the
physical and psy-
chological safety of all clients and staff. They should operate
with
PALLIATIVE CARE 315
transparency to build trust with those who serve and whom they
serve. By
utilizing peer support, they empower those who have
experienced trauma
and their stories to be agents of healing. Organizations promote
collabor-
ation through shared decision-making, seeking to minimize
power differen-
tials. They use a strengths-based approach to empower clients
and staff to
engage in meaningful decision-making activities. Finally,
organizations rec-
ognize historical trauma and power differentials related to
identities and
work to provide responsive, culturally-appropriate services.
Trauma and end of life
Numerous articles note the paucity of research exploring trauma
and older

adults (Dinnen, Simiola, & Cook, 2015; Hiskey et al., 2008;
Osei-Boamah
et al., 2013; Ramsey-Klawsnik & Miller, 2017) and trauma and
end of life
(Ganzel, 2018; Glick et al., 2018; Woods, 2003). A significant
portion of the
available literature focuses on veterans (Glick et al., 2018;
Hiskey et al.,
2008). One study found that although veterans reported PTSD
symptoms
less often than pain or dyspnea, when they did report them,
family mem-
bers described those symptoms as being more distressing to the
veterans
than dyspnea (Alici et al., 2010). PTSD symptoms were also
associated with
lower satisfaction with emotional support in end-of-life care,
communica-
tion problems, and the perception of less attention being paid to
the dying
person’s dignity and well-being (Alici et al.). People with a
history of
trauma and those with trauma-related symptoms report higher
levels of
pain at end of life (Ganzel, 2018). Glick and colleagues (2018)
note that
evidence points to a “bidirectional relationship” between pain
and PTSD:
those with PTSD report higher pain levels and people with pain
report
more trauma-related symptoms. Trauma-related symptoms
fundamentally
shift how a person experiences the world and these changes can
have an
especially pointed impact at end of life. Trauma symptoms have
a negative

impact on quality of life and increase the likelihood of
emotional distress
and comorbid mental health issues such as anxiety, depression,
and sub-
stance use disorders (Feldman, 2011; Ganzel, 2018).
In the context of overlapping symptoms and complex
comorbidities,
accurately assessing for trauma can be challenging, but
important. The risk
of missing the cause of a symptom brings the risk of mistreating
the symp-
tom and inadequately alleviating distress (Feldman &
Periyakoil, 2006). It
is also essential to screen for common comorbidities, such as
depression,
anxiety, substance use disorder, and suicidality (Glick et al.,
2018). While
valid and reliable assessment tools exist for PTSD, no research
validates
them for use at end of life (Glick et al., 2018).
A person at end of life may have recent traumatic experiences,
or earlier
traumas that may be triggered during end-of-life experiences,
including by
the dying process itself (Feldman & Periyakoil, 2006). Some
symptoms,
such as intrusion, are more common at end of life than full-
threshold
PTSD (Feldman & Periyakoil, 2006). SAMHSA (2014)
emphasizes an event,

experience, effect framework that acknowledges the individual
trauma jour-
ney. While certain types of events such as abuse, disasters, and
accidents
can raise the likelihood of trauma-related symptoms, it is
someone’s experi-
ence of that event (how they understand what happened), and
the after-
effects, or symptoms specific to that person that make it
significant, not an
official diagnosis (SAMHSA, 2014). Trauma-related symptoms
may impact
social support networks and communication with healthcare
providers.
People with PTSD often have stressed social relationships and
fewer social
supports (King et al., 2006), which can result in fewer informal
caregivers
available to help at end of life (Glick et al., 2018; Kaiser,
Seligowski, Spiro,
& Chopra, 2016). They also often have difficulty trusting
authority figures,
such as medical providers, which can make the difficult
conversations that
must occur near end of life even harder (Glick et al.). This
distrust impacts
disclosure of sensitive information (Jeffreys, Leibowitz, Finley,
& Arar,
2010), and, combined with avoidance of upsetting situations and
stimuli,
can adversely impact healthcare decision-making, delaying
important end-
of-life decisions when time is scarce and precious. This distrust
can also
lead to nonadherence to medical advice (Feldman, 2011) or
incomplete

reporting of symptoms to medical providers. Green and
colleagues (2016)
suggest that with appropriate training of the medical providers
this com-
munication can be improved.
Current literature reveals that many older adults and people at
end of
life are impacted by trauma (Krause et al., 2004; Pietrzak et al.,
2012).
There is significant overlap between the symptoms and needs of
older
adults and people at end of life, and specific subgroups, such as
veterans,
may have some additional specific factors for consideration.
Overall, there
is a need for greater adoption of trauma-informed approaches by
healthcare
organizations, including hospice and palliative care providers.
A model for intervention
Interventions for trauma at end of life include both
pharmacological and
psychosocial options. Social workers are trained to offer the
latter. Based
on the client’s strengths and needs, these interventions fit well
with person-
centered approaches in long-term care settings, and may include
psycho-
education of the client and their loved ones, normalizing end-
of-life and
trauma-related experiences, and education and training for the
staff

PALLIATIVE CARE 317
(Feldman & Periyakoil, 2006; Glick et al., 2018). Feldman
(2011) offers a
framework for providing trauma intervention at end of life: the
Stepwise
Psychosocial Palliative Care Model (see also Feldman, 2017;
Feldman et al.,
2014). The model moves the practitioner through assessment
and interven-
tion across three stages, moving from interventions that require
the least
effort by the dying person toward those that require more effort,
progress-
ing only if the prior phase has not adequately palliated the
trauma-related
discomfort and the person has sufficient time, stamina, and
desire to pro-
ceed (Feldman, 2011). This assessment requires communication
across the
interprofessional team (Feldman, 2017), defined by the
Medicare Hospice
benefit as minimally including a physician, nurse, social
worker, and pas-
toral/other counselor and often inclusive of care requiring other
team
members, such as physical, occupational, or speech therapists,
home health
aide, homemaker, pharmacist, and dietary or additional
counselors (SSA,
Title 42 section 1861). The model is designed to be flexible and
a step that
is already underway would likely continue concurrently with
subsequent

steps. Trauma-informed hospice care is best approached
collaboratively, as
each team member’s observations may be needed in assessment,
and Stage
I interventions are likely to be applied by all team members
(Feldman, 2017).
The first stage in this model focuses on practitioners using
interventions
to alleviate distress by taking actions on behalf of clients
(Feldman, 2017;
Feldman et al., 2014). As members of the interdisciplinary team
build rap-
port with a client, they may learn of distressing aspects of a
client’s situ-
ation that they could take collaborative, direct action to
ameliorate
(Feldman et al., 2014). While this runs counter to typical social
work
approaches of empowering clients to solve their own problems,
it addresses
the reality that many hospice clients may have little time and
energy to
take such actions on their own (Feldman et al., 2014).
During stage II of the model, intervention shifts to offering
tools for the
patient to use on their own to cope with distress as it arises
(Feldman,
2017). Psychoeducation and coping support are interventions
that hospice
social workers and other members of the team may be already
equipped to
offer (National Coalition for Hospice and Palliative Care, 2018;
NASW,
2004). Providing information about prevalence and potential

impacts of
trauma can reassure patients and family members about some of
the
unpleasant symptoms one is experiencing (Feldman, 2017).
Social workers
may wish to frame this information carefully, normalizing it to
minimize
any feelings of stigma or shame.
Similar to progression to stage II, before moving to stage III
interven-
tions, the hospice team should assess effectiveness of previous
interventions
(Feldman, 2017). Unlike Stages I and II, Stage III interventions
involve
treatment specific to full-threshold PTSD. Qualified personnel,
such as a
Licensed Clinical Social Worker (LCSW) or Licensed
Professional
Counselor (LPC), must complete differential diagnosis for
PTSD prior to
moving to stage III. Interventions in stage III entail thinking
and speaking
about trauma memories during sessions and should only be used
if trauma
symptoms are not adequately relieved and if the patient’s
energy, prognosis,
ability, and willingness to continue have been sufficiently
assessed
(Feldman, 2017). This stage is less likely to be utilized for
hospice patients,

based on limited prognoses. If indicated, any trauma-focused
approach can
be used during stage III, with eye movement desensitization and
reprocess-
ing (EMDR) therapy as one option (Feldman, 2017; Ganzel,
2018). Some
hospices are not equipped to provide this level of intervention
themselves
and outside referrals may be needed.
Case example
Richard is 82 and has Parkinson’s disease. He enrolled in
hospice after
experiencing significant decline from his disease. Richard and
his wife,
Helen, married 60 years, live with their daughter, Christine.
During initial
visits with Richard, it became apparent that he enjoys talking
about the life
he and his wife had “back home.” Per Christine, her parents had
been liv-
ing in the home where they raised their children until 2 years
ago, but had
moved in with her across the country after the unexpected death
of her
oldest sister, Katrina. At times Richard enjoys reminiscing
about his daugh-
ters’ childhood and other memories of Katrina. Other times he
becomes
agitated and angry at the mention of her. Christine and her
spouse both
work, but she has some flexibility and is gone from the home
for around
half of the work week.
Richard describes himself as artistic and creative; he loves

music, paint-
ing, and woodworking. He expresses feeling “old” and “weak”
and struggles
with not being able to do all he wants. His progressing illness
has made it
too difficult for him to regularly engage in these activities.
Helen also has
multiple health challenges, primarily heart disease, and is very
hard of hear-
ing making it particularly difficult for Richard and Helen to
communicate.
Richard and Helen have become involved at their daughter’s
church, but
miss their home community.
Helen and Christine are increasingly worried that Richard will
fall, as he
does not like to use his walker despite increasing weakness. He
has also
been getting up at night and even though he and Helen share a
bed, she
generally does not hear him. He says he has a hard time
sleeping, because
of distressing dreams and recurring, intrusive thoughts as he lay
awake. He
is often tired during the day and falls asleep mid-activity but
says he “does
PALLIATIVE CARE 319
not like to take rests.” Richard often becomes agitated while
receiving

assistance with his activities of daily living, such as using the
bathroom,
changing clothing, or bathing. He has increasing confusion and
forgetful-
ness and sometimes says that his wife’s collectibles which
adorn their bed-
room “come to life.”
Case discussion and application of trauma-informed approach
Trauma-informed care is a whole organization approach that
considers that
everyone (staff, clients, and family members) may have
experienced a past
traumatic event that needs to be taken into consideration
(SAMHSA,
2014). In hospice, where care is provided by an
interdisciplinary team, all
staff should have knowledge of trauma and be comfortable
approaching
care through this lens. Feldman’s model, outlined above,
provides a road
map to guide hospice providers from this whole organization
approach
through the care of a specific resident, which we apply to
Richard here.
Though full fidelity to each detail of Feldman’s model may be
impractical
in some instances in clinical practice, the model allows us to
conceptualize
approaches to addressing trauma at end of life.
Stage I: Palliate immediate discomfort and provide social
supports
Principle of universal precaution. In the case of Richard, the
interdisciplinary

hospice team might take a trauma-informed approach by using
the prin-
ciple of universal precaution (SAMHSA, 2014), operating under
the
assumption that any client may have a trauma background and
approaches
should seek to prevent possible retraumatization. This aligns
with the first
stage in the Stepwise Psychosocial Palliative Care Model
(Feldman, 2011),
as a universal precautions approach serves as a preventative
measure.
Where possible, prevention of distress is preferable to
subsequent mitiga-
tion of it.
Worsening Parkinson’s disease involves progressive loss of
physical func-
tion, including not only motor symptoms, but others, such as
sleep distur-
bances and psychosis (Parkinson’s Foundation, n.d.), which may
appear
similar to those of trauma-related origin. A universal
precautions approach
recognizes that symptoms could be related to effects of trauma
in addition
to or in combination with those related to physical disease. For
example,
Richard’s sleep disturbances or avoidance, visual perceptions
(collectibles
“come to life”), confusion, and forgetfulness could be related to
his
Parkinson’s disease, but also to the effects of trauma.
The case example details numerous losses for Richard, along
with several

clues about potential traumas. Richard is experiencing the
physical and
cognitive changes that come with Parkinson’s disease, which
includes some
loss of control of his body, physical limitations, difficulty
communicating
with his wife, the secondary loss of his hobbies (which may
connect with
his sense of identity and his coping skills), and even his sense
of self (he
describes himself as “old” and “weak”). His move across the
country relates
to the loss of his community, existing support network, and a
familiar set-
ting and sense of what to expect from the world around him.
Moving in
with his daughter decreased his sense of privacy and
independence, with
another person’s concern and input into his daily decisions,
such as
whether to use a walker. The move was also sudden, following
his oldest
daughter’s unexpected death. Such sudden, unexpected deaths
can be trau-
matic, especially depending on the circumstances surrounding
the death.
He may not have had an opportunity to say goodbye or make
amends with
her, the death itself may have been traumatic, and he likely felt
little con-
trol over any of it. These factors could contribute to an

increased likelihood
for complicated grief. Complicated grief, which consists of
separation dis-
tress and grief symptoms (Boelen & Lenferink, 2020) is distinct
from
PTSD, but shares symptoms such as disruptive thoughts and
avoidance
(Shear et al., 2011). If complicated grief were to occur, it could
interact
with trauma from the death experience or other life events and it
would be
a risk factor for developing symptomatic PTSD (Prigerson et
al., 2009).
These are only the losses and traumas that Richard and his
family have
shared; adopting a precautionary approach assumes that ther e
may be add-
itional, as-yet unnamed ones.
Move beyond prevention to active steps. Using empathy, the
hospice team can
validate Richard’s emotions and experiences and reassure him
by providing
clear explanations for his physical symptoms. To help relieve
environmen-
tally-related discomfort, the team can consider how the physical
home
environment might contribute to his discomfort (Feldman,
2017). Though
Richard has lived with his daughter for two years, the
surroundings may
still feel unfamiliar, especially during moments of
disorientation. Ideas for
action may include inquiring about the kind of lighting Richard
used at his
old house at night when sleeping. Dim night lights might help

Richard to
reorient himself during periods of wakefulness. Richard may
also be com-
forted to have familiar furniture from “back home” in view from
his bed.
The use of an audio monitor is also an unobtrusive way for
Richard to
remain sleeping in his own bed, while allowing his daughter to
be alerted if
he falls or needs help when his wife does not waken to the
noise.
The hospice team can also make efforts to learn more about
Richard’s
background and experiences, so they can make educated guesses
about
what things might elicit trauma-related symptoms. For example,
after learn-
ing about Richard’s agitation when assisted with activities of
daily living,
PALLIATIVE CARE 321
they might guess that Richard is grieving his lost physical
abilities, these
changes threaten his identity or masculinity, feelings of
powerlessness are
related to disease-related confusion, or that there is undisclosed
past
trauma. It is not essential to know the exact reason for these
being uncom-
fortable experiences, but once the team is aware that receiving
physical

assistance seems to be distressing for Richard, they can develop
a plan for
action. Coaching aides and team members to ask permission
before touch-
ing Richard’s body and then communicating clearly where and
how they
will be touching him is one practical approach. Members of the
care team
can also ask Richard how he would like to be assisted with
these activities
and then follow his preferences and directions to help him
regain a sense
of agency during these interactions.
Difficulty in communication between Richard and Helen is
another
upsetting issue for Richard and could exacerbate other stressors.
Though
the hospice team is present for Richard’s health, they might
suggest that
Helen have her hearing evaluated, if she has not recently. Other
communi-
cation strategies might also be helpful, such as a communication
board, for
Helen to watch Richard’s lips as he speaks, and for Christine to
repeat
Richard’s words loudly for Helen when they are together.
Though the
changes would not fully resolve the issue, improved marital
communication
would enhance one of Richard’s most important social supports.
Reassessment and next steps. Reassessment of Richard’s
trauma-related symp-
toms following these interventions is important. Even if there
are reduced

symptoms, the social worker should evaluate the duration of
effects and
ongoing reoccurrences and consult with other members of the
team. For
Richard, the effects may seem brief, and symptoms may recur
without con-
tinued active palliation efforts. Additionally, he may continue
to have chal-
lenges based on issues not yet addressed during stage I,
particularly his
occasional agitation when reminiscing about his deceased
daughter and his
intrusive thoughts while trying to sleep at night. The team can
start by fol-
lowing Richard’s lead on conversations about Katrina—
listening and engag-
ing when Richard brings her up, but not mentioning her during
other
conversations of life review. Considerations for continuing to
the next stage
include assessing Richard’s ability and willingness to engage in
psychoedu-
cation and sessions to develop coping skills.
Stage II: provide psychoeducation and enhance coping skills
The interprofessional team should confer about Richard’s
symptoms following
implementation of stage I and only proceed to stage II if
symptoms are not
adequately alleviated (Feldman, 2017). This might mean that the
team has
identified additional details about past events, such as his
daughter’s death or

move to a new environment, connecting observed symptoms
directly to expe-
riences of trauma and/or PTSD. If the team discovers that the
symptoms per-
sist, they can provide psychoeducation about trauma to Richard
and his
family. Psychoeducation is a useful intervention to normalize
reactions to
trauma, increase understanding, and to teach coping skills
(Whitworth, 2016).
Psychoeducation should be offered often, in the context of a
supportive rela-
tionship, and involve elements of resiliency and recovery
including increasing
understanding for how trauma impacts an individual’s function
(Whitworth).
Additionally, training Richard on relaxation techniques and
mindfulness-based
acceptance skills could help him cope with distressing
symptoms
(Whitworth), regardless of their basis in trauma, grief, or
disease progression.
Stage III: treat specific trauma issues
As with the transition from Stages I to II, the interprofessional
team should
confer about Richard’s symptoms before considering a move
from Stages II
to III and only consider Stage III if Stage II fails to alleviate
trauma-related
symptoms. However, additional considerations for
implementing Stage III
include the need for differential diagnosis of PTSD by qualified
personnel,

such as an LCSW or LPC, and a full evaluation of Richard’s
energy,
remaining time, and interest in pursuing trauma treatment.
Discussion
The focus of hospice is on maximizing quality of life during the
time that a
person has remaining as they approach death. Since trauma can
have such
adverse impacts on quality of life and the associated symptoms
can compli-
cate care and life review at end of life, trauma deserves clinical
attention of
interdisciplinary hospice team members, including social
workers. Trauma-
informed care’s universal approach is useful in a setting with an
interdis-
ciplinary team because it can be provided by anyone, once they
are trained.
While all staff should be trained on trauma’s impacts and
trauma-informed
principles, no specific degree or qualifications are required to
provide this
care. Applying Feldman’s model (2017) to Richard’s care
provides: insight
for a universal precautions approach in the consideration of
trauma in
end-of-life care; structure to guide assessment and interventions
at end of
life; identification of needed research; and the call for a
systems-level
approach in addressing trauma at end of life.
Determining the impacts of trauma: differential diagnosis and
universal

precautions
Trauma researchers and practitioners agree that best practice for
trauma
treatment involves a thorough assessment of past traumatic
experiences
PALLIATIVE CARE 323
(Muskett, 2014) and diagnosis of trauma-related conditions if
applicable.
Certainly, in many therapeutic contexts across the lifespan,
assessment and
differential diagnosis of trauma-related conditions is critical for
treatment
choices and outcomes. Yet for some patients at end of life,
differential diag-
nosis may not be possible or welcome (Ganzel, 2018). In
situations where
trauma treatment is not or cannot be the focus, a universal
precautions
approach minimizes the risk of doing harm. The authors argue
that this is
the case in end-of-life care, at least for stages I and II of
Feldman’s (2017)
model. Feldman’s approach is useful because it provides room
to recognize
and address trauma without necessarily having to officially
diagnose it.
Otherwise, potential trauma-related symptoms could go
unrecognized and
unmitigated, leading to preventable suffering. The case
discussion offered

here presents instances where trauma could exist, and trauma-
informed
approaches could mitigate symptoms without requiring
differential diagno-
sis, though diagnosis by a qualified mental health professional,
such as a
Licensed Clinical Social Worker, would be necessary before
proceeding to
Stage III interventions.
Reynolds and colleagues (2016) noted that older adults are more
likely to
present with trauma-related symptoms that are sub-threshold for
PTSD,
but are clinically relevant, nonetheless. Glick and col leagues
(2018) sug-
gested that adjusted diagnostic criteria for people at end of life
may be
necessary, since the symptom presentation may be so different
than the
general population. Such adjusted assessment criteria and scales
should be
developed to aid clinicians in more effective assessment and
differential
diagnosis of trauma at end of life. Since hospice social workers
do not need
to make a mental health diagnosis to be compensated for their
services,
they are well-positioned to move beyond DSM PTSD criteria to
use a
broader trauma lens to support their clients’ well-being
wherever they may
fall on this trauma spectrum.
Assessments and interventions

While valid and reliable assessments exist for PTSD, none have
been tested
for use with people at end of life (Glick et al., 2018). This
should be rem-
edied with further research. Similarly, research is needed for
trauma assess-
ments to use with people with dementia. Like assessments, there
is a need
for more evidence-based trauma interventions for use with
people at end of
life. Feldman has taken an important first step with the Stepwise
Psychosocial Palliative Care model (2011), which provides a
helpful frame-
work, but he offers only minimal details into evidence
supported treatment
options for the clinician–client team that might require active
treatment of
the trauma in Phase III. This reflects a lack of specific research
in this area,
but other treatments may be appropriate. It may be that
modified protocols
for existing therapies work for this population, such as trauma-
focused cog-
nitive behavioral therapy (TF-CBT), prolonged exposure, and
EMDR, how-
ever, research is needed to explore these possibilities.
Additionally, many
people naturally engage in life review during older adulthood
and end of
life, but the resulting reengagement with traumatic memories
can be trig-

gering. A better understanding is needed of the benefits, risks,
and poten-
tial modifications to clinician-facilitated life review
interventions for use in
people experiencing trauma at end of life.
Areas for further research
Following SAMHSA’s broader definition of trauma begs the
question of
how to define trauma in order to measure it, if the more limited
definition
of PTSD is insufficient to capture clinically significant distress.
To begin
answering this question, further research could investigate what
kinds of
events and traumatic stressors have the greatest impact on
trauma-related
symptoms, hospice utilization, pain management, and quality of
life at end
of life. Additional qualitative research could investigate the
reported experi-
ences of dying people with a trauma history to identify other
areas for fur-
ther research exploration.
Because the literature on trauma at end of life is largely based
on studies
using veteran samples, it may hold a gender bias toward men.
Further
research should address this by exploring the experiences of
women and
transgender people. Similarly, more information is needed about
the impact
of trauma experiences at end of life that are not related to
military service

Is Social Work Prepared for Diversity in Hospiceand Palliati

Is Social Work Prepared for Diversity in Hospiceand Palliati

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