6210 Week 6 Discussion - Paper Answers

Discussion – Week 6

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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 01/4/2022

Describe 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?

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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.

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.

MeetRay: Age 41-68

Meet Ray: Age 41-68
Program Transcript

NARRATOR: Now in middle adulthood, Ray notices diminished eyesight and graying

hair as well as more physical pain due to the job. He becomes fearful he will die and

leave his kids without a father just as he was around their age. To combat this feeling,

Ray decides to wear contact lenses, dye his hair, exercise, and take supplements. He

feels inadequate in his relationship, but Yolanda reassures him she still loves him.

At 55, Ray accepts that he is older and is experiencing the aging process. By this time,

Peter has graduated high school, attended community college, and transitioned to the

state university. Amy has started community college as well. Ray is happy for his

children’s success but also saddened because he was not able to fulfill his own dream

of going to college.

In his early 60s, Ray requires physical therapy due to wear and tear on his body. He

soon acknowledges that he cannot physically function at his job anymore because of

the pain. He applies for disability benefits.

Amy and Peter, who both have successful careers, assist their parents with household

bills. Ray experiences loneliness and depression while Yolanda is at work. Speaking of

the physical disabilities he developed from the factory, he says, I gave my life away to a

job.

Peter and Amy move closer to home to help with their father. Peter’s young daughter

often comes along on visits, which brings Ray joy. Ray picks up his old craft of

woodworking, carefully whittling wood creatures for his granddaughter.

Promoting Healthy Aging by Confronting Ageism

Todd D. Nelson

California State University—Stanislaus

Negative stereotypes about older people are discussed with specific regard to their negative
influence on the mental and physical health of older people. Much research has demonstrated
a clear, direct threat to the cognition of older persons when older individuals believe in the
truth of these negative stereotypes. For example, the will to live is decreased, memory is
impaired, and the individual is less interested in engaging in healthy preventive behaviors.
Negative age stereotypes also have significant negative effects on the physical well-being of
older persons. Recovery from illness is impaired, cardiovascular reactivity to stress is
increased, and longevity is decreased. Impediments to addressing this issue are presented,
along with several specific and evidence-based recommendations for solutions to this prob-
lem. The healthy aging of older adults can be greatly enhanced with the concerted efforts of
politicians, educators, physicians, mental health professionals, and other health care workers
working to implement these recommendations.

Keywords: healthy aging, ageism, stereotypes

Ageism is prejudice directed against someone based on
his or her age (Butler, 1969). Typically, research on ageism
has focused on prejudice against older persons, and though
the field is still relatively young (the term ageism having
been coined in 1969 by Robert Butler), much research has
demonstrated the pervasive and rather institutionalized na-
ture of prejudice against older persons in the United States
(Nelson, 2015; Ng, Allore, Trentalange, Monin, & Levy,
2015). Like any other prejudice, ageism is based on a
number of negative stereotypes. It is these negative stereo-
types that are the focus of the present article. Specifically, in
this article, I will discuss how psychological and medical
research has demonstrated that negative stereotypes about
aging have a direct and significant negative impact on the
mental and physical well-being of older adults, one of the
four priority topics considered at the 2015 White House
Conference on Aging (2015). Impediments to addressing
this impact of ageism on healthy aging will be discussed,
and recommendations for specific and realistic solutions
will be highlighted. These solutions are aimed at eliminat-
ing the insidious influence of negative age stereotypes on

older persons such that their mental and physical health, and
ultimately longevity are improved.

Influence of Ageism on Cognition

The influence of negative age stereotypes on cognition
can be very strong, even when the older individual is not
consciously thinking about the negative stereotypes (Levy
& Banaji, 2002; Lamont, Swift, & Abrams, 2015). For
example, Hess, Hinson, and Statham (2004) exposed young
and old people to implicit and explicit age stereotypes and
then tested their free recall memory. Results indicated that
when negative age stereotypes are implicitly primed, older
participants’ recall on a memory test was significantly lower
than when positive stereotypes were so primed. Even
middle-aged people who are primed with an old-age stereo-
type tended to perform significantly worse than those who
receive young or no primes. These results highlight the
negative influence of old age stereotypes on one’s memory,
even among a population (i.e., middle-aged adults) that
could conceivably believe that such old age stereotypes do
not apply to them (Meisner, 2012; O’Brien & Hummert,
2006).

One might argue that memory loss in old age is a natural
byproduct of the aging process. If this were the case, there
would likely be comparable levels of memory decline
across cultures. However, this does not appear to be the
case, and the reason for this may lie in cultural differences
in how society treats its elders (Levy, 2009). In an interest-
ing study, Levy and Langer (1994) compared the memory
performance of Chinese and American older adults. The
Chinese participants outperformed the American partici-

Editor’s note. This article is one of nine in the special issue, “Aging in
America: Perspectives From Psychological Science,” published in American
Psychologist (May–June 2016). Karen A. Roberto and Deborah A. DiGilio
provided scholarly lead for the special issue.

Author’s note. Correspondence concerning this article should be ad-
dressed to Todd D. Nelson, Department of Psychology, California State Univer-
sity—Stanislaus, 1 University Circle, Turlock, CA 95382. E-mail: tnelson@
csustan.edu

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American Psychologist © 2016 American Psychological Association
2016, Vol. 71, No. 4,

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–282 0003-066X/16/$12.00 http://dx.doi.org/10.1037/a0040221

276

pants on the memory tests, suggesting a sociocultural rather
than a biological cause for the differences. The study au-
thors concluded that the difference lies in how older Chi-
nese and American adults view aging. The Chinese had
much more positive views of aging, while the older Amer-
ican adults were far more pessimistic. Levy and Langer
suggested that the negative stereotypes of aging in Ameri-
can culture lead people to believe in the truth of those
stereotypes, and this becomes a self-fulfilling prophecy.
This negative effect of age stereotypes on memory does not
appear to be due to short-lived influences. In a study of
longitudinal data over 38 years, Levy, Zonderman, Slade,
and Ferrucci (2012) found that those who endorsed more
negative age stereotypes demonstrated a 30.2% greater
memory decline compared to their counterparts who did not
endorse such age stereotypes. These results are also notable
in that they demonstrate for the first time that psychosocial
influences can predict memory decline over decades.

The degree to which older people believe in the truth
about ageist stereotypes can have a significant influence
even on their will to live (Levy, Ashman, & Dror, 1999-
2000; Marques, Lima, Abrams, & Swift, 2014). Believing
negative age stereotypes also influences the degree to which
older people feel that they have control over their health. As
a result, older people who believe they have little or no
control over their health tend to be less likely to engage in
preventative health behaviors or seek medical help when
they encounter health problems (Sargent-Cox & Anstey,
2015). Older persons who have a negative perception of
aging are more likely to encounter problems in their basic
activities of daily life (e.g., bathing, dressing, feeding, walk-
ing) and instrumental activities of daily life (e.g., house-

work, managing money, using a phone, cooking; Moser,
Spagnoli, & Santos-Eggimann, 2011). While these studies
illustrate the negative effects of age stereotypes on the way
older people think, perhaps more alarmingly, much research
also demonstrates a clear influence of negative age stereo-
types on the physical well-being of older adults.

Age Stereotypes and Physical Health

A common assumption is that aging is a process that is
characterized by physical decline and that the reasons for
health issues later in life are due to common biological
ailments that mark people’s aging. However, this assump-
tion needs to be revised in light of the rather robust finding
by psychologists that the way older people are perceived,
and how they perceive themselves can either hasten physi-
cal decline or, in fact, work to greatly reduce it (Levy, 2009;
Sargent-Cox, Anstey, & Luszcz, 2012). For example,
among older adults who were asked to cite the reasons for
their physical disabilities, those who cited “old age” as the
primary reason had significantly higher levels of arthritis,
heart disease and hearing loss compared to those not attrib-
uting their disability to old age (Williamson & Fried, 1996).
Older persons who endorsed negative stereotypes about
aging tend to demonstrate worse hearing compared to their
more positive counterparts (Levy, Slade, & Gill, 2006).

Two longitudinal studies of age-related beliefs and health
outcomes showed that when older people accepted negative
stereotypes about old age (e.g., as a time of physical and
mental decline), they had worse health outcomes than those
who had more positive views of aging (Levy et al., 2016;
Levy, Zonderman, Slade, & Ferrucci, 2009; Wurm, Tesch-
Römer, & Tomasik, 2007). According to the Wurm et al.
(2007), this may be due to the operation of a couple of
mechanisms. First, locus of control beliefs can influence
whether older persons believe that anything can be done to
prevent health problems in old age. To the degree that
individuals have strong internal control beliefs, they will be
more likely to adopt preventative behaviors, seek medical
care, and disbelieve negative stereotypes about the inevita-
bility of age-related health declines. Second, if one believes
that old age is accompanied by inevitable health declines,
this may cause stress and anxiety. Studies have demon-
strated that increased stress and adrenaline adversely influ-
ence one’s immune functioning (Cohen, Janicki-Deverts, &
Miller, 2007) and cardiovascular health (Rozanski, Blumen-
thal, Davidson, Saab, & Kubzansky, 2005).

Indeed, the mere exposure of older persons to negative
stereotypes about old age increases cardiovascular response
to stress (Levy et al., 2008). Participants in this study were
primed with words associated with either positive age ste-
reotypes (e.g., sage, astute, accomplished, wise) or negative
age stereotypes (e.g., Alzheimer’s, decrepit, forgets, senile).
They then were exposed to different forms of stress induc-

Todd D. Nelson
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277PROMOTING HEALTHY AGING BY CONFRONTING AGEISM

tion (counting backward by 7s, and describing for 3 min a
very stressful event they experienced). Cardiovascular re-
sponse (heart rate, blood pressure) was measured. Partici-
pants exposed to negative age stereotype primes had signif-
icantly stronger cardiac response to stress compared to those
exposed to positive age stereotype primes. These data point
to the powerful effects of the older person’s age-related
thoughts on their physical response to stress (Allen, 2015).

Age Stereotypes and Longevity

Several studies indicate that people who attribute their
health problems to aging had a higher mortality rate than
those who did not make such an attributional link (Levy &
Myers, 2005; Rakowski & Hickey, 1992; Stewart, Chipper-
field, Perry, & Weiner, 2012). This may be happening
because such attributions direct attention away from the real
disease, thus causing harmful delays in seeking medical
assistance when their health worsens. A study by Sarkisian,
Hays, and Mangione (2002) found that older people had
lower expectations regarding their mental and cognitive
quality of life, higher expectations of being depressed, be-
coming dependent, having less energy, and these negative
expectations were associated with placing less importance
on seeking health care. These poor expectations (e.g., “to be
old is to be ill”) derived from the negative stereotypes about
old age resulted in a more than double the mortality rate
compared to older adults who do not have such negative
expectations about their health (Stewart et al., 2012). Ng,
Levy, Allore, and Monin (in press) found that people who
had more positive ideas about their mental and physical
health when they got older actually lived 2.5 and 4.5 years
longer (respectively) than those who believed the negative
stereotypes about the mental and physical decline that ac-
companies old age.

The Match Between Stereotypes and Oneself

It should be noted that several studies have demonstrated
that the negative effects of the negative age-related stereo-
types can be mitigated or even eliminated if older adults
perceives a mismatch between the stereotype and how they
view themselves (or their future; Levy & Leifheit-Limson,
2009). For example, when people aged 75 and older were
asked if they had ever experienced ageism, almost all of
them had said no, and older individuals who answered in the
affirmative reported that it did not bother them (Nelson,
2004). However, among persons aged 55–74, most indi-
cated that they had experienced ageism, and it really made
them upset when it occurred. One explanation is that those
in the older group believed in the truth of negative age
stereotypes, so they did not perceive such age discrimina-
tion as ageist. Whereas younger people did not perceive
themselves as “old” and thus felt insulted when someone

treated them in an ageist way. Older people who are in good
mental and physical health regard ageist behavior (such as
speaking loudly, in simple terms, as if the older person is a
child) as disrespectful and insulting (Giles, Fox, Harwood,
& Williams, 1994). However, those who have health or
mental impairments tended to prefer such treatment (some-
times called “baby talk”) because it conveyed a dependency
relationship and made them feel safe and secure (Caporael,
Lukaszewski, & Culbertson, 1983; Ryan, Hamilton, & See,
1994).

Barriers

Perhaps the biggest impediment to reducing the influence
of ageism and its pernicious influence on the well-being of
older persons is that ageism remains one of the most insti-
tutionalized forms of prejudice today (Nelson, 2002, 2015).
That is, most people do not regard stereotypes about older
people the same way as they recognize the harmful stereo-
types about racism or sexism. We talk about having a
“senior moment,” or being “over the hill” (if you are old,
your best days are behind you). Our birthday greeting cards
convey the message that it is bad to get old. One marketing
firm predicted that in 2015, Americans will spend 114
billion dollars on products designed to hide the physical
signs of aging (Crary, 2011). Our entire society tells older
people, “you are useless, unwanted, and a burden.” It tells
younger people that getting old is bad, and being old is
worse.

Ageism infuses itself throughout all areas of American
society, and it even biases the attitudes of those whose job
it is to help others: specifically, physicians and mental
health professionals. Thus, the well-being of older people is
compromised when age stereotypes bias health care profes-
sionals in terms of who they prefer to see (younger clients)
and their treatment recommendations (Blackwood, 2015;
Kagan & Melendez-Torres, 2015). Reyes-Ortiz (1997) sug-
gested that many physicians view older patients as “depress-
ing, senile, untreatable, and rigid” (p. 831). Doctors may shy
away from providing older patients computerized health
information, on the stereotype that older people do not
understand or are fearful of technology. In fact, research
shows that older people are equally likely to use comput-
erized health information as young people (Wagner & Wag-
ner, 2003). Doctors all too often think that because old age
is unstoppable, illnesses that accompany old age are not
important, because such illnesses are seen as a natural part
of the aging process (Gekoski & Knox, 1990; Levenson,
1981). While some physicians acknowledge that they treat
elderly differently from younger patients, they argue that
what appears to be ageism on their part reflects a bias in
their hospital budgeting priorities (Skirbekk & Nortvedt,
2014). Other research suggests that in health care systems
designed to discharge patients quickly, elderly patients

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278 NELSON

(who often present with multiple ailments and require lon-
ger treatment) are “troublesome” to the health care provider,
and this may give rise to ageist attitudes (Kydd & Fleming,
2015).

Recent research shows that older adults are less likely to
be included in clinical trials (Zulman et al., 2011). More
education and training of physicians is required so that they
learn about myths of aging and negative age stereotypes,
and how these can negatively influence their interactions
with older patients, and the treatments they choose for them
(Schroyen, Adam, Jerusalem, & Missotten, 2015). Older
patients tend to receive less treatment, and had more limi-
tations in life-sustaining treatments, even when controlling
for severity of illness (Brandberg, Blomqvist, & Jirwe,
2013). Similarly, some mental health professionals show an
age bias against older clients, and will tend to avoid taking
on older clients due to negative stereotypes such as old
people are just lonely and want someone to talk to (Adel-
man, et al., 1990; Cuddy, Norton, & Fiske, 2005).

Solutions

There is room for optimism with respect to solutions
aimed at addressing the negative influence of negative age
stereotypes on healthy aging. First, much research has dem-
onstrated that just as negative stereotypes can have detri-
mental effects on the mental and physical health of older
persons, positive stereotypes and positive views of aging
can counteract those negative consequences (Levy, 2009).
Older persons who resist and do not endorse negative age
stereotypes were significantly less likely to develop various
psychiatric problems (e.g., posttraumatic stress disorder,
anxiety, suicidal ideation) than those who accepted negative
age stereotypes (Levy, Pilver, & Pietrzak, 2014). Rejection
of negative stereotypes can have physical benefits as well.
More positive perceptions of aging are protective of phys-
ical declines in older persons (Hausdorff, Levy, & Wei,
1999; Levy, Pilver, Chung, & Slade, 2014; Sargent-Cox,
Anstey, & Luszcz, 2012).

All else being equal, when older people have a more
positive view of aging, they have better functional health
(Levy, Slade & Kasl, 2002), and they are significantly more
likely to engage in preventive healthy behaviors (Levy &
Myers, 2004). Positive views of aging have been shown to
reduce cardiovascular stress in older persons (Levy, Haus-
dorff, Hencke & Wei, 2000) and even facilitate recovery
after an acute myocardial infarction (Levy, Slade, May &
Caracciolo, 2006), and recovery from disability (Levy,
Slade, Murphy, & Gill, 2012). Positive views of one’s own
aging and of retirement has also been shown to result in
increased longevity of 7.5 and 4.9 years, respectively (Levy,
Slade, Kunkel, & Kasl, 2002; Lakra, Ng, & Levy, 2012).

These encouraging findings suggest several hopeful ave-
nues to effect a change in society that will result in a higher

quality of life for older persons. Going forward, psycholo-
gists need to do the following.

Educate Society About the Myths of Aging

Much research shows that dramatic positive improve-
ments in physical and mental well-being in older persons
can be effected when we begin to teach all ages of society
about the myths about aging and to emphasize the positive
aspects of aging (Nelson, in press). We need to reframe
aging as a time of continued activity, growth and enjoy-
ment. For example, older people should be encouraged to
adopt healthier and more positive views of retirement and
aging in general. At its last three conventions, the American
Psychological Association has held symposia on “meaning-
ful retirement,” designed to debunk ageist myths of life after
retirement, and show positive models of postwork life (see
Cole, 2015; Strickland, 2015). As previously discussed,
research indicates that such a positive perspective can have
significant, meaningful positive developments for the men-
tal and physical health of older persons.

Foster Continued and Positive Family Relations
and Social Support

Positive family relationships and social support systems
act as a buffer against negative self-views, and negative
mental and physical health outcomes in older persons. Re-
cent data shows that when adults had positive expectations
about their mental and physical health in old age, or even if
they expected some decline, but knew that support would be
reliable and attainable, they felt a sense of security and
control over their aging. (Bai, Lai, & Guo, in press; Ramirez
& Palacios-Espinosa, in press). Age stereotypes thrive when
younger people have little to no interactions with older
adults (Montepare & Zebrowitz, 2002). Programs designed
to bring children into contact with older persons (such as
Foster Grandparents) can reduce the likelihood of develop-
ing ageist attitudes as the child grows to adulthood (Mur-
phy, Myers, & Drennan, 1982). These programs also pro-
vide benefits to older persons in the form of socialization
and positive emotional and cognitive progress (Dunlap,
2015).

Promote the Education and Training of
Psychologists and Health Care Professionals to
Dispel Age Myths and Stereotypes

Addressing aging bias among health care professionals
can have clear positive effects on the healthy aging of older
patients and clients. More needs to be done to encourage
physicians and mental health professionals to choose ca-
reers in gerontology and geriatrics (see policies toward that
end by the American Medical Association (2015) and the
American Association of Medical Colleges; Jablow, 2015),

279PROMOTING HEALTHY AGING BY CONFRONTING AGEISM

as the dramatic shift in our ever-aging population necessi-
tates a strong need for more professionals to address the
needs of older people. For example, the government could
institute student loan forgiveness programs for those who
choose a career in gerontology or geriatrics. It is estimated
that by 2030, an additional 3.5 million geriatric health care
professionals will be needed to meet the rapidly expanding
population of those age 65 and older (Robert Wood Johnson
Foundation, 2010).

Conclusion

Ageism presents a clear and direct threat to the healthy
aging of older persons. Negative age stereotypes, whether
perpetuated by younger persons or health care workers or
even believed and internalized by older persons themselves,
have been demonstrated to cause real harm to the mental
health of older persons, reduce their will to live, impair
memory, and lead older persons to avoid preventive health
behaviors. Additionally, such age stereotypes impair recov-
ery from illness, and even decrease longevity. The problem
is made more difficult in that ageism is institutionalized in
American culture, so that prejudice and stereotypes about
aging and older people tend to be recognized not as serious
problems, but more as “amusing truths.” There are several
things that psychologists, policymakers, educators, and phy-
sicians can do to avoid or at least reverse the harmful health
effects of ageism. Primary among these solutions is more
education about myths and stereotypes about aging directed
at youth, college and graduate programs training future
geriatric workers, policymakers and politicians, and older
people themselves. Second, research has shown that when
older people shun negative age stereotypes and instead see
aging as a time of continued growth, positivity, socializing,
and activity, they tend to show significantly better mental
and physical health outcomes compared to their counter-
parts who view aging with greater pessimism. To the degree
that the recommended changes are instituted, we can begin
to reverse the negative stereotypes about aging and their
accompanying harmful effects on the healthy aging of older
persons. In so doing, we can make optimistic progress
toward providing older adults with a society that is attentive
to their needs, respectful of their worth, and happily encour-
ages their participation in all aspects of society.

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Received July 20, 2015
Revision received December 10, 2015

Accepted December 10, 2015 �

282 NELSON

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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 &
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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 cara.wallace@slu.edu School of Social Work, College for Public Health and
Social Justice, Saint Louis University, St. Louis, Missouri 3550, USA.
� 2020 Taylor & Francis Group, LLC

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http://orcid.org/0000-0002-2909-0973

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http://orcid.org/0000-0003-2278-8495

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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

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & 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).

316 E. S. RICKS-AHERNE ET AL.

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

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & 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

318 E. S. RICKS-AHERNE ET AL.

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

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & 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

320 E. S. RICKS-AHERNE ET AL.

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 there 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,

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & 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

322 E. S. RICKS-AHERNE ET AL.

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

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & 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 colleagues (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,

324 E. S. RICKS-AHERNE ET AL.

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
or combat, such as Adverse Childhood Events and chronic stressors such
as racism (Janssen, n.d.). Research in this area could also begin to evaluate
whether it is useful to differentiate between traumatic experiences that
meet the American Psychiatric Association’s Diagnostic and Statistical
Manual 5 criterion A for PTSD (2013) and other traumas that do not.

Systems-level approach

SAMHSA’s “Concept of Trauma and Guidance for a Trauma-Informed
Approach” (2014) calls for adoption of a trauma-informed approach with
all people throughout an organization, across all departments. Such com-
prehensive culture change is challenging and requires buy-in at all levels of
the organization. For an example of another field undergoing fundamental
changes in approaches to their work with clients, practitioners working to
effect change in their organization may look to the culture change efforts
toward person-directed care for older adults as spearheaded by the Pioneer

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE 325

Network (Pioneer Network, n.d.). Hospice organizations that adopt
trauma-informed approaches must honestly evaluate their capacity to assess
and address trauma. Stage I approaches are universal and can be provided
by all staff once properly trained. Stage II assessments, differential diagnosis
prior to Stage III interventions, and implementation of specialized trauma
interventions in Stage III require the skills of qualified clinical personnel
such as licensed clinical social workers, as required by state and federal
law. Stage III interventions that directly address trauma require qualified
personnel to administer and hospice agencies must be prepared to employ
or refer to ensure competence in implementing these approaches. This self-
assessment of capacity is essential for organizational level implementation
of trauma-informed care.
Trauma is a common experience over the life course (Benjet et al., 2016;

Kilpatrick et al., 2013; Strand et al., 2014) and even subsyndromal trauma-
related symptoms can cause clinically significant distress for people at end of
life (Ganzel, 2018), reducing their quality of life during precious remaining
days. Trauma symptoms can be palliated (Feldman, 2011) and the focus of hos-
pice is maximizing a person’s quality of life in their remaining time, so it is per-
tinent that social workers and other members of interdisciplinary hospice and
palliative care teams assess for and respond to trauma in people at end of life.

ORCID

Elizabeth S. Ricks-Aherne http://orcid.org/0000-0002-2909-0973
Cara L. Wallace http://orcid.org/0000-0002-6739-1910
Nancy Kusmaul http://orcid.org/0000-0003-2278-8495

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JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE 329

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Abstract

What is trauma?
Principles of trauma-informed care
Trauma and end of life
A model for intervention
Case example
Case discussion and application of trauma-informed approach
Stage I: Palliate immediate discomfort and provide social supports
Principle of universal precaution
Move beyond prevention to active steps
Reassessment and next steps
Stage II: provide psychoeducation and enhance coping skills
Stage III: treat specific trauma issues

Discussion
Determining the impacts of trauma: differential diagnosis and universal precautions
Assessments and interventions
Areas for further research
Systems-level approach
Orcid
References

Discussion – Week 6

Top of Form

Discussion: Perspectives on the Aging Process

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.

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 01/4/2022
Describe 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

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%)

Readability of Postings: 5.4 (18%) – 6 (20%)

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

doi: 10.1093/hsw/hlx048 © 2017 National Association of Social Workers 41Downloaded from https://academic.oup.com/hsw/article-abstract/43/1/41/4734955
by Adam Ellsworth, Adam Ellsworth
on 09 February 2018

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 information
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,

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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: crine@edinboro.edu.

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

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