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Assignment: End-of-Life Care and Social Work Practice

Naturally, death and dying is also a biological change that occurs in later adulthood. As older adults age, they may experience diseases that impact their already vulnerable organ and immune systems such as cancer, Alzheimer’s, and cardiovascular issues. They may die painlessly at home surrounded by the support of many loved ones, or may suffer severe pain for months before dying in a health facility with little social support.

In either case, it is possible that many health and helping professionals interact with the dying person and their family. Social workers in particular play a key role, working to ensure that the individual’s wishes are honored and that the death is dignified.

For this Assignment, you examine the social worker’s role in the many aspects that accompany end-of-life planning and care.

To Prepare:

  • Review the Learning Resources      on end-of-life care and social work, and reflect on the social worker’s      role in end-of-life care and planning.
  • Search in the Walden Library      for at least one additional peer-reviewed research      article that addresses how a social worker might support clients as they      plan end-of-life care.  

By Day 01/05/2021

Submit a 3- to 4-page paper that analyzes the role of the social worker in helping to plan end-of-life care.

Include possible consideration of palliative care, euthanasia, hospice care, the living will and advanced directives, and other factors.

Use the Learning Resources and at least one additional peer-reviewed research article (Family-Centered Care: A Resource for Social Work in End-of-Life and Palliative Care) to support your analysis. Make sure to provide APA citations and a reference list.

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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)

The additional peer review I pick is Family-Centered Care: A Resource for Social Work in End-of-Life and Palliative Care

To cite this article: Pamela J. Kovacs PhD , Melissa Hayden Bellin PhD, LCSW & David P. Fauri PhD (2006) Family-Centered Care, Journal of Social Work in End-of-Life & Palliative Care, 2:1, 13-27, DOI: 10.1300/J457v02n01_03 To link to this article: https://doi.org/10.1300/J457v02n01_03

Chapter Review:

Chapter Summary The following summarizes this chapter’s content as it relates to the learning objectives presented at the beginning of the chapter. Chapter content will help prepare students to:

LO 1 Define later adulthood. Later adulthood begins at around age 65. This grouping is an extremely diverse one, spanning an age range of more than 30 years.

LO 2 Describe the physiological and mental changes that occur in later adulthood. Later adulthood is an age of recompense, a time when people reap the consequences of the kind of

life they have lived. The process of aging affects dif-ferent persons at different rates. Nature appears to have a built-in mechanism that promotes aging, but it is not known what this mechanism is.

LO 3 Understand contemporary theories on the causes of the aging process. Theories on the causes of aging can be grouped into three categories: genetic theories, nongenetic cellular theories, and physiological theories. Various factors accelerate the aging process: poor

diet, overwork, alcohol or drug abuse, prolonged ill-nesses, severe disabilities, prolonged stress, negative thinking, exposure to prolonged hot or cold condi-tions, and serious emotional problems. Factors that slow down the aging process include a proper diet, skill in relaxing and managing stress, being physi-cally and mentally active, a positive outlook on life, and learning how to control unwanted emotions.

LO 4 Describe common diseases and major causes of death among older adults. Older people are much more susceptible to physical illnesses than are younger people, yet many older people are reasonably healthy. The two leading causes of death are diseases of the heart and cancer. Alzheimer’s disease affects many older adults.

LO 5 Understand the importance of placing the highest priority on self-care. Everyone (young, middle age, and older) should place a high priority on self-care. If social workers do not care for themselves, their ability to care for others will be sharply diminished or even depleted. Significantly, the intervention strategies that social workers should use for self-care are also precisely the strategies that social workers should convey to their clients so that these clients can improve their lives. Everyone needs physical exercise, mental activity,

a healthy sleep pattern, proper nutrition and diet, and to use quality stress management strategies. Three constructive stress management approaches

are (1) changing the distressing event, (2) chang-ing one’s thinking about the distressing event, and (3) taking one’s mind off the distressing event, usu-ally by thinking about something else. The chapter ends with a discussion of the effects

of stress, and describes a variety of stress manage-ment techniques.

COMPETENCY NOTES The following identifies where Educational Policy (EP) competencies and behaviors are discussed in the chapter.

EP 6a. Apply knowledge of human behavior and the social environment, person-in-environment, and other multidisciplinary theoretical frameworks to engage with clients and constituencies

EP 7b. Apply knowledge of human behavior and the social environment, person-in-environment and other multidisciplinary theoretical frameworks in the analysis of assessment data from clients and constituencies. (All of this chapter.) The content of this chapter is focused on social work students acquiring both of these behaviors in work-ing with older persons.

EP 8b. Apply knowledge of human behavior and the social environment, person-in-environment, and other multidisciplinary theoretical frameworks in interventions with

clients and constituencies (pp. 658–670). Material is presented on self-care interventions that social workers should use in their daily lives to care for themselves. These interventions should also be used by social workers to improve the lives of their clients.

EP 1 Demonstrate Ethical and Professional Behavior (pp. 646, 649, 653, 657) Ethical questions are posed.

WEB RESOURCES

See this text’s companion website at www.cengagebrain.com for learning tools such as chapter quizzes, videos, and more.

Copyright

Nelson, T. D. (2016). Promoting healthy aging by confronting ageism. American Psychologist, 71(4), 276–282

Ricks-Aherne, E. S., Wallace, C. L., & Kusmaul, N. (2020). Practice considerations for trauma-informed care at end of life. Journal of Social Work in End-of-Life and Palliative Care, 16(4), 313–329. https://doi.org/10.1080/15524256.2020.1819939

Rine, C. M. (2018). Is social work prepared for diversity in hospice and palliative care? Health and Social Work, 43(1), 41–50. https://doi.org/10.1093/hsw/hlx048

Required Media: Meet Ray: Age 41 to 68 Time Estimate: 2 minutes

Follow Rubric

Submit a 2- to 4-page paper that analyzes the role of the social worker in helping to plan end-of-life care.

28.35 (40.5%) – 31.5 (45%)

Response meets expectations and exceeds by expanding on the analysis with details, examples, and evidence from an additional research article (for a total of two). Response provides insightful comparisons and draws conclusions among the selected articles and the Learning Resources.

Include possible consideration of palliative care, euthanasia, hospice care, the living will and advanced directives, and other factors.

25.2 (36%) – 28 (40%)

Response meets expectations and exceeds by expanding upon the analysis to include three or more specific factors and/or details, examples, and evidence from an additional research article (for a total of two)

Writing

9.45 (13.5%) – 10.5 (15%)

Paper meets length requirements, meets expectations, is generally error free (two or fewer), and further exceeds by showcasing an exemplary scholarly voice to develop its message or communicate ideas.
Paper appropriately paraphrases sources, using one or less quotes. Presents polished APA Style. Citations, reference list, and paper formatting are generally error free (two or fewer).Tone and presentation of ideas are free from bias and objective, unless otherwise directed in the prompt.

Full Terms & Conditions of access and use can be found at
https://www.tandfonline.com/action/journalInformation?journalCode=wswe20

Journal of Social Work in End-of-Life & Palliative Care

ISSN: 1552-4256 (Print) 1552-4264 (Online) Journal homepage: https://www.tandfonline.com/loi/wswe20

Family-Centered Care
A Resource for Social Work

in End-of-Life and Palliative Care

Pamela J. Kovacs PhD , Melissa Hayden Bellin PhD, LCSW & David P. Fauri
PhD

To cite this article: Pamela J. Kovacs PhD , Melissa Hayden Bellin PhD, LCSW & David P. Fauri
PhD (2006) Family-Centered Care, Journal of Social Work in End-of-Life & Palliative Care, 2:1,
13-27, DOI: 10.1300/J457v02n01_03

To link to this article: https://doi.org/10.1300/J457v02n01_03

Published online: 17 Oct 2008.

Submit your article to this journal

Article views: 1436

View related articles

Citing articles: 5 View citing articles

PEER-REVIEWED ARTICLES

Family-Centered Care:
A Resource for Social Work

in End-of-Life and Palliative Care

Pamela J. Kovacs, PhD
Melissa Hayden Bellin, PhD, LCSW

David P. Fauri, PhD

ABSTRACT. Recent trends in medicine reflect an attempt to be more
patient-centered and while this is progress from the disease- or pro-
vider-focused model familiar in healthcare, the experiences and contri-
butions of family as caregivers continue to be overlooked in some
settings. The family-centered care model, developed most notably in
pediatrics, but emerging in HIV, cancer, and aging, is presented as a re-
source to increase family involvement at the end of life. In this paper,
family-centered care is defined, caregiving trends including support
needs of formal and informal caregivers are discussed, and barriers to

Pamela J. Kovacs, PhD (E-mail: pjkovacs@vcu.edu), Associate Professor, and David
P. Fauri, PhD (E-mail: dfauri@vcu.edu), Professor, are affiliated with Virginia Common-
wealth University School of Social Work, 1001 West Franklin Street, Richmond, VA
23284-2027. Melissa Hayden Bellin, PhD, LCSW, is Assistant Professor, University of
Maryland School of Social Work, 525 West Bedwood Street, Baltimore, MD 21201.

Address correspondence to: Pamela J. Kovacs (E-mail: pjkovacs@vcu.edu).
The authors gratefully acknowledge the assistance of Dr. Ellen Netting on an earlier

version of this manuscript.

Journal of Social Work in End-of-Life & Palliative Care, Vol. 2(1) 2006
Available online at http://www.haworthpress.com/web/JSWEL

© 2006 by The Haworth Press, Inc. All rights reserved.
doi:10.1300/J457v02n01_03 13

family-centered services are identified. Reintroducing family into the
focus of care at the end of life is the primary goal of this paper. The fam-
ily-centered model of care offers an appropriate framework for under-
standing the value of family in end-of-life care and fits well with social
work perspectives that understand individuals in the context of their
family system and greater environment. [Article copies available for a
fee from The Haworth Document Delivery Service: 1-800-HAWORTH.
E-mail address: Website: © 2006 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Family-centered care, social work, end-of-life care,
hospice, palliative care, caregiving

INTRODUCTION

Prior to the 20th century, death commonly occurred at home with
care provided by family members and neighbors, supplemented by visits
from a local physician. Caregiving in this earlier era was less of an op-
tion and more of an understood personal and family responsibility. Over
time, Americans have increasingly gravitated toward hospitals and
nursing homes for technological advances or nursing and respite care.
The modern hospice movement in the United States, initially esta-
blished in the 1970s, was a community response to the desire for more
options at the end of life, especially of those that help patients die at
home. However, despite the development of more than 3,300 hospices
serving most communities in the United States, the majority of deaths in
2003 occurred in healthcare institutions, mainly hospitals (50%) and
nursing facilities (25%), (National Hospice and Palliative Care Organi-
zation, 2004) where families tend to observe rather than participate as
caregivers in the dying process (Brabant, 2003; Teno, Casey, Welch, &
Edgman-Levitan, 2001).

Two important developments have the potential to increase family
involvement at the end of life: One is the growth in palliative care ser-
vices in hospitals; the other is the proliferation of family-centered care
(FCC) models in pediatrics, aging, and other patient populations. How
might the professional caregivers–the physicians, nurses, social workers,
clergy, and others involved in formal caregiving–partner with the infor-
mal caregiving network of family and friends to best care for persons at
the end of life? While social workers understand the importance of family,
additional strategies and conceptual frameworks that include family are

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

needed. The focus of this paper is to bring together lessons learned from
hospice and palliative care, the FCC models, and the caregiver literature
to help promote greater inclusion of family in end-of-life care.

DEFINITIONS

The following definitions help provide the framework for this paper:

Family-Centered Care. Family-Centered Care is defined as, “An ap-
proach to the planning, delivery, and evaluation of healthcare that is
governed by mutually beneficial partnerships between healthcare provid-
ers, patients, and families” (IFCC, n.d.). The Institute for Family-cen-
tered Care (IFCC) identifies four defining principles of family-centered
Care: (1) People are treated with dignity and respect. (2) Healthcare pro-
viders communicate and share complete and unbiased information with
patients and families in ways that are affirming and useful. (3) Patients
and family members build on their strengths by participating in experi-
ences that enhance control and independence and (4) Collaboration
among patients, family members, and providers occurs in policy and pro-
gram development and professional education, as well as in the delivery
of care (Johnson, 1998).

FCC is a model that simultaneously addresses the medical and psy-
chosocial health of the patient and the strengths and concerns of the
family. A particularly important catalyst for this enhanced attention to
family is the work of the IFCC, a nonprofit educational, research, and
advocacy organization founded in 1992. IFCC initially focused on
bringing family-centered services to the pediatric population. While pe-
diatric services remain a central mission of IFCC, the organization has
also responded to a growing need for family-centered models in other
populations, such as HIV/AIDS, cancer, and aging (R. Parrish, personal
communication, March 1, 2004).

Family. Lattanzi-Licht, Mahoney, and Miller (1998) provide the
following hospice definition of family: “All those in loving relation-
ships with the person who is dying, the people who can be counted on
for caring and support, regardless of blood or legal ties” (p. 29). This
definition is inclusive of families of choice as well as birth families and
reflects the increasing diversity in family types. This definition is also
consistent with empowerment practice in that the patient and family de-
cide who is included as family.

Caregivers. The professional literature uses the word caregiver to de-
scribe both those who provide help on a formal basis (e.g., professionals

Peer-Reviewed Articles 15

and trained volunteers) and those whose help is provided more informally
(e.g., family members, friends, neighbors, and others who have personal
connections to the patient and/or family). We refer to these groups as for-
mal and informal caregivers (Kovacs & Fauri, 2003).

Palliative Care. Recognizing some “ongoing debate and lack of con-
sensus” regarding the meaning of palliative care, Bern-Klug, Kramer,
and Linder (2005) provide the following definition of palliative care:
“Symptom control and supportive care from the time of diagnosis
through the time of dying and death, as well as bereavement support for
the loved ones” (pp. 75-76). The debate relates to the view that “pallia-
tive care issues should be part of all healthcare experiences, regardless
of proximity to time of dying and death” (p. 75). This is acknowledged
in the following broader definition of palliative care provided by the
World Health Organization (WHO, 2005, p. 1):

An approach that improves the quality of life of patients and their
families facing problems associated with life-threatening illness,
through the prevention and relief or suffering by means of early
identification and impeccable assessment and treatment of pain
and other problems, physical, psychosocial and spiritual.

Given that the focus of this paper is on end of life, and in particular the
need for enhanced family-centered care in healthcare settings, the more
focused definition provided by Bern-Klug and colleagues is used for
this paper.

Hospice. Hospice is one of the models of palliative care. Contrary to
popular belief, it is not so much a place, as it is a philosophy of care with
a family-centered approach that considers the patient and family to be
the unit of care (Lattanzi-Licht et al., 1998). An interdisciplinary team
that includes, at a minimum, a doctor, nurse, social worker, counselor
for spiritual care, and trained volunteer delivers palliative care as per
guidelines developed by National Hospice and Palliative Care Organi-
zation and by Medicare and other sources of reimbursement.

CAREGIVING TRENDS

A brief look at the shift in American society from traditional family
caregiving to institution-based caregiving illuminates some of the chal-
lenges in reintroducing family into the care equation. The following five
factors help explain current reliance upon professionals in institutions.

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

First is the belief that life can be prolonged in healthcare institutions
through scientifically based care (Fins, 1999). The technology of medi-
cal monitoring and treatment has become standard for the seriously ill
or dying persons. Second, there tends to be a general discomfort in dis-
cussing and acknowledging death, which may lead to denial of the real-
ity of impending death. Medical institutions provide the benefits of
science and technology for the dying, while at times separating family
members and loved ones from aspects of death that may be physically
and/or emotionally difficult. Medical professionals are relied on, to help
manage the dying process for the patient and the family, often without
adequate training for this role (Schwartz, Goulet, Phil, Gorski, &
Selwyn, 2003).

The third factor contributing to the prominence of institutional care-
giving is the increasing mobility of the U.S. population. Fewer families
provide immediate, local support in multigenerational, extended fami-
lies today as compared with the past. As young people move away and
older family members remain behind or relocate during retirement, the
availability of family caregivers is often compromised, causing greater
dependence on formal caregivers (Donelan, Hill, Hoffman, Scoles,
Hollander, Feldman, & Gould, 2002). Fourth, due to the trend toward
smaller family size, fewer adult children are available to share the care-
giving responsibilities for older adults (Moen, Robison, & Fields, 1994).
The fifth contributing factor is the fact that more Americans are living
longer, often outliving those who would be their caregivers (spouses or
partners, adult children, and friends).

FAMILY-CENTERED CARE AT THE END OF LIFE

Appreciation for how families experience the dying process chal-
lenges healthcare professionals to determine whether traditional service
provision, characterized by a “provider-as-expert” philosophy of care,
adequately and sensitively meets the needs of families. An alternative
approach is illustrated in pediatric palliative care that reflects a philoso-
phy of care inclusive of the surrounding family unit (Rosenbaum, King,
Law, King, & Evans, 1998). Although healthcare services remain fo-
cused on the patient, understanding and encouraging the critical roles
family members play in supporting the dying individual is integral to a
family-centered philosophy of care (Teno, Clarridge, Casey, Edgman-
Levitan, & Fowler, 2001). Logan (1988) captures this perspective, stat-

Peer-Reviewed Articles 17

ing the provision of end-of-life services “must be applicable to the
individual and the family, as both are clients of care” (p. 34).

Data from focus groups with bereaved family members consistently
suggest that from a family perspective, quality end-of-life care simulta-
neously attends to the needs and values of the dying person and
provides family members with support throughout the dying process
(Teno et al., 2001). Further evidence underscoring the importance of
family involvement at the end of life is found in Lord and Pockett’s
(1998) research evaluating congruence in social workers’ and family
members’ perceptions of the needs of and actual care provided to termi-
nally ill patients. In 77% of the cases, a match was observed on the iden-
tified needs expressed by family members and social workers, such as the
importance of ventilation and emotional support in adjusting to the im-
pact of the illness, obtaining information, and communicating with staff.

The significance of family inclusion in end-of-life care similarly
emerged in Kristjanson’s (1989) study of family satisfaction with termi-
nal care. A qualitative study was conducted involving 210 family mem-
bers from three different care settings to identify key indicators that
families of terminally ill cancer patients perceived as important. Timely
and straightforward information by health professionals and a hospital
environment receptive to family members were highlighted as key as-
pects of effective quality care. It is important to remember, however,
that families will vary in their interest and in their physical, as well
as emotional capacity for involvement. Even when available, family
members will need varying degrees of education about their potential
caregiving roles. This diversity of response and need underscores the
importance of an individualized assessment, a hallmark of social work
practice.

The literature offers some preliminary examples of implementing
family-centered care at the end of life. The most comprehensive policies
and practices are evident in the pediatric care domain (Gilmer, 2002;
Rosenbaum et al., 1998). For example, the American Academy of Pedi-
atrics (AAP) issued a policy statement underscoring the importance of
an integrated model of palliative care for children, one that recognizes
the central role of the family (AAP Committee on Bioethics and Com-
mittee on Hospital Care, 2000). Pediatric palliative care education in
nursing has similarly emphasized the provision of family-centered care,
highlighting the core components of respect, choice, information, col-
laboration, and empowerment (Roberts & Boyle, 2005). Finally, the
long-standing advocacy of Children’s Hospice International (CHI) has
been essential to raising awareness about the need for increased collab-

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

oration between the family and medical professionals in the care of dying
children (CHI, 1993). Beyond this, examples and models of including
the family as a target of services are less common in the adult literature.

One conceptual model offers a solid introduction to applying family-
centered care in work with adult populations (Teno, Casey et al., 2001).
Based on a literature review of expert guidelines and a series of focus
groups with bereaved family members, Teno and colleagues identified
the following elements as fundamental to implementing institutionally
based family-centered end-of-life care: (1) Provide the dying person
with the desired level of physical comfort and emotional support;
(2) promote shared decision making; (3) focus on the individual
through medical care that treats the dying person with kindness, facili-
tates the dying person taking the desired level of control over daily deci-
sions, and facilitates closure; (4) attend to the needs of family members,
including both practical support for caregivers and emotional support
prior to and after the patient’s death; and (5) ensure coordination of
medical care. Thus, family-centered care at the end of life offers an
opportunity to support families and strengthen a working partnership
between the patient, family, and health professionals. Before family-
centered care can be systematically implemented in care settings, how-
ever, recognition and resolution of barriers to this care are needed.

BARRIERS TO FAMILY-CENTERED CARE
AT THE END OF LIFE

In practice, implementation of family-centered care at the end of life
is inconsistent. Logan (1988), for example, notes that although pallia-
tive care services target both dying patients and their families, in actual-
ity, family members may not receive desired psychosocial support. Too
frequently provider-patient staffing ratios, restricted family visitation,
and a healthcare culture dominated by a focus on task performance, pro-
hibits or severely limits successful implementation of family-centered
end-of-life care (Mendyka, 1993). Family members also express frus-
tration with the persistence of a provider-centered model due to unequal
power distribution and communication difficulties (Lord & Pockett,
1998; Teno, Casey et al., 2001). Unfortunately, role stress, negotiation
failure, and power struggles between health providers and family mem-
bers emerge as significant barriers to effective integration of family-
centered services in end-of-life care (Newton, 2000).

Peer-Reviewed Articles 19

Providing informal caregivers with informational support and educa-
tion, an important component of family-centered care, takes time. In
busy short-staffed, fast-paced hospital units, staff may not have the time
or incentive to answer questions and to educate and support family mem-
bers. Other barriers include inadequate communication among healthcare
providers, the lack of a coordinated service delivery system, and insuffi-
cient fiscal resources (Brewer, McPherson, Magrab, & Hutchins, 1989).

Furthermore, lack of institutional support for family-centered care,
manifest in a healthcare environment that emphasizes cost reductions
and reduced length of stay, conveys messages that services ought to be
focused on technical care to dying persons, at the expense of attending
to the stressors and needs expressed by surrounding family members
(Mendyka, 1993). Bruder (2000) aptly commented, “If one part of a
system does not demonstrate family-centered attitudes, it is hard for the
others in a system to override the damage this causes” (p. 110). How-
ever, as more healthcare providers become trained in family-centered
care, addressing the needs of patients and families will, hopefully,
become an integral part of all care. One avenue to attend to the complex
and diverse needs of family members is an appreciation of the stressors
and rewards experienced by caregivers.

CARING FOR CAREGIVERS

Stressors, Rewards, and Caregiving

Caregiving is demanding, consuming caregiver’s emotional and phy-
sical energy as well as time. For both formal and informal caregivers,
instruction and guidance, social supports, personal coping mechanisms,
and positive beliefs about cultural values related to caregiving may help
reduce the related stressors. While some degree of stress is normal given
the physical and emotional intensity and demands of the caregiving role,
each person’s level of stress and capacity to cope depends on a variety
of factors (Connor, 2000).

Informal caregivers may experience stress owing to emotional, phy-
sical, or financial pressures as well as strain of family relationships.
Stressors may be immediate and short term, or, especially in the case of
families, may reflect long-term difficulties. Terms such as caregiver
burden (Chwalisz & Kisler,1995), caretaker role fatigue, spousal burn-
out, and role engulfment refer to an imbalance between the physical and
mental resources needed to give care and those available within the

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

family unit or community (Reese & Sontag, 2001). The demands of
family caregiving often result in depression, anxiety, sleeplessness, and
other signs of emotional strain. In addition, informal caregivers may
experience financial hardship and deterioration of their own health,
which in turn affects other family members as well as the patient.

By contrast, family-centered care may help ameliorate the stressors,
creating more room for caregivers to enjoy the rewards of their roles.
Indeed, Conner (2000) suggests that many caregivers derive enhanced
self-esteem from managing the multiple roles associated with care-
giving. Lattanzi-Licht et al. (1998) describe this complexity: “Most
[hospice] families relate to the dying process as both a difficult and valu-
able time . . . the majority of family members who care for a loved one de-
scribe high feelings of self-satisfaction and little regret” (pp. 30-31).
Some caregivers report an improved relationship with the care recipient
and others report feeling more religious or spiritual as a result of their
caregiving experience (Donelan et al., 2002).

Those seeking resources to support family caregivers need to be
aware that funding is available for state- and community-based support
programs, as well as research in service delivery innovation (Donelan
et al., 2002). The Older Americans Act Amendments of 2000 that in-
cluded the Family Caregiver Support Act (FCSA) is a policy response
to the increasing involvement and importance of family caregivers. The
FCSA is a federal initiative designed to expand assistance and services
for family caregivers. It encourages support for caregivers through
training, counseling, and information, as well as respite care for family
members who are providing support for older relatives at home (AARP
Research Center, 2000).

Some healthcare providers also experience stress in their caregiving
roles. Stress may emerge due to unclear boundaries between themselves
and patients’ families and in relationships with professional colleagues.
To a degree, this is set up by the curative role expected of medical staff.
For example, when working with dying children, professional care-
givers often have “unrealistic expectations and grandiose feelings of in-
dispensability” (Lattanzi-Licht, 1991, p. 298). When formal caregivers
are clear about their respective roles, everyone benefits. Formal care-
givers often realize a sense of professional competence and fulfillment
through their work and informal caregivers may experience increased
family closeness, strengthened advocacy skills, and growth in self-con-
fidence and knowledge. The literature offers some guidance for sup-
porting informal and formal caregivers in a manner that enhances the
rewards of their experiences and promotes an atmosphere conducive to

Peer-Reviewed Articles 21

family-centered care (Teno, Casey et al., 2001; Teno, Clarridge et al.,
2001).

Support for Informal Caregivers

Support for informal caregivers may come from family members,
friends, and community acquaintances, many of whom are also person-
ally affected by the patient’s impending death. Respite care, meaning
time off from caregiving responsibilities, may be informally provided
by other family, neighbors, churches and other organizations who often
volunteer; or more formally provided, occasionally by hospice admis-
sion or purchased by the family from homecare agencies for hours or
days at a time (Ingleton, Payne, Nolan, & Carey, 2003; Lattanzi-Licht
et al., 1998). This service recognizes the need for caregivers to have
time away from the physical and emotional responsibilities of their
caretaking roles.

Much of the research on caregiving has focused on generational is-
sues. The “sandwich generation” in particular describes the phenomenon
of adult children caring for both their own children and their older
parents (Pearlin, Pioli, & McLaughlin, 2001). However, older spousal
caregivers often are forced to restructure their lives to accommodate
caregiving, illustrating that fitting in caregiving while managing other
roles is not limited solely to the younger generation of adult children.

Information and education about how best to care for the patient are
an important source of support for informal caregivers. Family mem-
bers of dying patients consistently describe high-quality medical care,
as equipping them with the skills and knowledge to meet the needs of
loved ones at home (Teno, Casey et al., 2001). In a survey of family
members of dying patients, information about how to manage a patient’s
pain at home emerged as one of the most important family care items
(Kristjanson, 1989). Knowledge about the following is also helpful:
Medication; moving, bathing, and assisting the patient safely and com-
fortably; nutritional needs; and the dying process itself. Assistance with
legal and financial matters such as funeral arrangements, advanced di-
rectives, power of attorney, and DNR (do not resuscitate) are other
forms of support to informal caregivers. Clearly, for many caregivers,
this information and support helps to ease their fears, increase their
competence, and may minimize emergency calls. Others, however, may
find education and information overwhelming rather than comforting
depending upon their emotional readiness, capacity to understand the
details, the format in which the material is presented, and other factors

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

(Kovacs & Cagle, 2005). This distress is decreased when information is
delivered in a well-planned manner that recognizes the complexities of
family structure, traditions, literacy, and culture.

Support groups, which often provide instruction in managing care-
giving roles and emotional support, have been identified as an important
resource for family caregivers (Brazil, Bedard, Krueger, Abernathy,
Lohfeld, & Willison, 2005). While scheduling these meetings may be
challenging in institutional settings given short lengths of stay, limited
meeting space and time, and families’ sporadic visitation schedules,
social workers are encouraged to provide group opportunities and/or
inform caregivers of groups that may be available in the community.

Support for Formal Caregivers

Providing support for formal caregivers usually involves institution-
based activities. Some examples include support groups for staff and
volunteers, supportive supervision in an atmosphere in which it is safe
to discuss the challenges related to work, professional training and con-
tinuing education in end-of-life care. Many hospices plan regular me-
morial services that provide time for staff and family members to honor
individuals who have died, as well as to acknowledge the work and per-
sonal involvement of staff and volunteers (Rawling & Glynn, 2002).
This type of institutional support tends to be more limited in acute and
critical care settings (Fauri, Ettner, & Kovacs, 2000). As Curtis and
Rubenfeld (2001) suggest in regard to critical care, “The challenge to
clinicians and educators in this area is to span two cultures: The rescue
culture of critical care and the hospice culture of palliative medicine”
(p. 4). In a survey of nursing homes, Murphy, Hanrahan, and Luchins
(1997) found minimal support available to residents, their families, or
staff members following deaths in these institutions. Another study
(Kristen, Coleman, Fish, Levy, & Kutner, 2004) identified an educational
deficit among physicians, staff, and the public as one reason for lack of
quality end-of-life care.

Professional training and continuing education increase the confi-
dence and competence of formal caregivers. There are several important
public and private initiatives focusing on the education of physicians,
nurses, social workers, chaplains, and others who provide care to the
dying (McPhee et al., 2000). Initiatives to improve palliative care edu-
cation for professionals and the public include the American Medical
Association’s Education for Physicians in the End-of-Life Care Program
(EPEC), a similar program for nurses, End-of-Life Nursing Education

Peer-Reviewed Articles 23

Consortium (ELNEC), and the U.S. Department of Veterans Affairs’
Faculty Scholars in End-of-Life Care Program. (See Christ and Blacker
(2005) for a summary of numerous social work initiatives to prepare
practitioners, leaders, and scholars in end-of-life care.) Community-
based quality improvement activities on end-of-life care can be organ-
ized nationally or by healthcare institutions, health-related coalitions, or
civic leaders to heighten public awareness related to family caregiving
at the end of life (Byock, Norris, Curtis, & Patrick, 2001). Examples of
broad-based efforts to enhance end-of-life care through professional and
public education, community awareness, and state policy include the
Soros Foundation’s Project on Death in America, two programs funded
by the Robert Wood Johnson Foundation, Last Acts and Community-
State Partnerships, and the Public Broadcasting System’s project tied to
the Bill Moyers series On Our Own Terms: Moyers on Dying.

IMPLICATIONS FOR SOCIAL WORK PRACTICE

Family-centered care is a natural fit with social work and offers a fra-
mework through which to improve the overall efficiency of end-of-life
care. Social workers are trained to intervene at the micro- mezzo- and
macro-levels, with individuals, families, groups, and communities. We
consider the person in his/her environment (Karls, 2002) conducting an
ongoing assessment of the interaction between the person and his/her
family, community, and greater environment. Our training in human
behavior and the social environment and family systems (Carter &
McGoldrick, 2005) prepares us to view individuals in the larger context
of their family and social environments making us uniquely qualified to
model for other interdisciplinary formal caregivers in providing family-
centered care. As family-centered care gains acceptance in pediatrics,
gerontology, and other medical settings, it helps strengthen the role
social work can play in encouraging increased family participation with
dying patients.

CONCLUSION

There was a time when caring for dying patients and their families
was an integral part of family and community life and the practice of
medicine. However, as healthcare became more specialized and techno-
logical advances facilitated a societal desire to avoid death and prolong

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

life, end-of-life care became more fragmented. Still, caring for people
when they are dying will always be one of life’s most challenging privi-
leges. With good family-centered care, formal and informal caregivers
are better able meet this challenge in a way that enhances not only the
lives of persons who are dying, but the lives of caregivers as well. This
framework provides the opportunity and some guidelines for greater
collaboration between professional caregivers, patients, and family
members at the end of life. Given social work’s tradition and focus on
understanding individuals in the context of their family and larger envi-
ronment, we are well positioned to help promote this approach in health-
care.

REFERENCES

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AARP Research Center (2000). Caregiving and long-term care. Available at: http://
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Bern-Klug, M., Kramer, B. J., & Linder, J. F. (2005). All aboard: Advancing the social
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Brabant, S. (2003). Death in two settings: The acute care facility and hospice. In C.
Bryant (Ed.), The handbook of thanatology (Vol 1) (pp. 475-484). Thousand Oaks,
CA: Sage Publications.

Brazil, K., Bedard, M., Krueger, P., Abernathy, T., Lohfeld, L., & Willison, K. (2005).
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Brewer, E. J., McPherson, M., Magrab, P. R., & Hutchins, V. L. (1989). Family-cen-
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Bruder, M. B. (2000). Family-centered early intervention: Clarifying our values for the
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Byock, I., Norris, K., Curtis, J. R., & Patrick, D. L. (2001) Improving end-of-life expe-
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Children’s Hospice International (1993). Standards for hospice care for children. Pedi-
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Christ, C., & Blacker, S. (2005). Setting an agenda for social work in end-of-life and
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Chwalisz, K., & Kisler, V. (1995). Perceived stress: A better measure of caregiver
burden. Measurement & Evaluation in Counseling & Development, 28 (2), 88-99.

Peer-Reviewed Articles 25

Conner, K. A. (2000). Continuing to care: Older Americans and their families in the
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Curtis, J. R., & Gordon, D. R. (2001). Managing death in the intensive care unit: The
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Donelan, K., Hill, C. R., Hoffman, C., Scoles, K., Hollander, P., Feldman, C. L., &
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Fauri, D. J., Ettner, B., & Kovacs, P. J. (2000). Bereavement services in acute care
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Fins, J. J. (1999). Death and dying in the 1990s: Intimations of reality and immortality.
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Gilmer, M. J. (2002). Pediatric palliative care: A family-centered model for critical
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Ingleton, C., Payne, S., Nolan, M., & Carey, I. (2003). Respite in palliative care: A
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Johnson, B. (1998). Core principles of family-centered healthcare. Advances, 4, 2-4.
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Kovacs, P. J., & Cagle, J. G. (2005, February). Education: A complex and empowering
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Kovacs, P. J., & Fauri, D. (2003). Formal and informal caregiving at the end of life. In
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Kristen, R. N., Coleman, E. E., Fish, R., Levy, C., & Kutner, J. S. (2004). Factors influ-
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Kristjanson, L. J. (1989). Quality of terminal care: Salient indicators identified by fam-
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Lattanzi-Licht, M. (1991). Professional stress: Creating a context for caring. In
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Lattanzi-Licht, M., Mahoney, J. J., & Miller, G. W. (1998). The hospice choice: In
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Logan, M. (1988). Care of the terminally ill includes the family. Canadian Nurse,
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Lord, B., & Pockett, R. (1998). Perceptions of social work intervention with bereaved
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Mendyka, B. E. (1993). The dying patient in the intensive care unit: Assisting the
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Newton, M. S. (2000). Family-centered care: Current realities in parent participation.
Pediatric Nursing, 26, 164-168.

Pearlin, L., Pioli, M. F., & McLaughlin, A. E. (2001). Caregiving by adult children:
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Rawling, D., & Glynn, T. (2002). The development of a palliative care-led memorial
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Reese, D. J., & Sontag, M. A. (2001). Successful interprofessional collaboration on the
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Roberts, K. E., & Boyle, L. A. (2005). End-of-life education in the pediatric intensive
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Schwartz, C. E., Goulet, J. L., Phil, M., Gorski, V., & Selwyn, P. A. (2003). Medical
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Date Received: 06/22/05
Date Accepted: 08/22/05

Peer-Reviewed Articles 27

Week 6

Top of Form

Assignment: End-of-Life Care and Social Work Practice

Naturally, death and dying is also a biological change that occurs in later adulthood. As older adults age, they may experience diseases that impact their already vulnerable organ and immune systems such as cancer, Alzheimer’s, and cardiovascular issues. They may die painlessly at home surrounded by the support of many loved ones, or may suffer severe pain for months before dying in a health facility with little social support.

In either case, it is possible that many health and helping professionals interact with the dying person and their family. Social workers in particular play a key role, working to ensure that the individual’s wishes are honored and that the death is dignified.

For this Assignment, you examine the social worker’s role in the many aspects that accompany end-of-life planning and care.

To Prepare:

·

Review the Learning Resources on end-of-life care and social work, and reflect on the social worker’s role in end-of-life care and planning.

· Search in the Walden Library for at least one additional peer-reviewed research article that addresses how a social worker might support clients as they plan end-of-life care.  

·

By Day 01/05/2021

Submit a 3- to 4-page paper that analyzes the role of the social worker in helping to plan end-of-life care. Include possible consideration of palliative care, euthanasia, hospice care, the living will and advanced directives, and other factors.

Use the Learning Resources and at least one additional peer-reviewed research article (Family-Centered Care: A Resource for Social Work in End-of-Life and Palliative Care) to support your analysis. Make sure to provide APA citations and a reference list.

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)

The additional peer review I pick is Family-Centered Care: A Resource for Social Work in End-of-Life and Palliative Care

To cite this article: Pamela J. Kovacs PhD , Melissa Hayden Bellin PhD, LCSW & David P. Fauri PhD (2006) Family-Centered Care, Journal of Social Work in End-of-Life & Palliative Care, 2:1, 13-27, DOI: 10.1300/J457v02n01_03 To link to this article: https://doi.org/10.1300/J457v02n01_03

Chapter Review:

Chapter Summary The following summarizes this chapter’s content as it relates to the learning objectives presented at the beginning of the chapter. Chapter content will help prepare students to:
LO 1 Define later adulthood. Later adulthood begins at around age 65. This grouping is an extremely diverse one, spanning an age range of more than 30 years.
LO 2 Describe the physiological and mental changes that occur in later adulthood. Later adulthood is an age of recompense, a time when people reap the consequences of the kind of
life they have lived. The process of aging affects dif-ferent persons at different rates. Nature appears to have a built-in mechanism that promotes aging, but it is not known what this mechanism is.
LO 3 Understand contemporary theories on the causes of the aging process. Theories on the causes of aging can be grouped into three categories: genetic theories, nongenetic cellular theories, and physiological theories. Various factors accelerate the aging process: poor
diet, overwork, alcohol or drug abuse, prolonged ill-nesses, severe disabilities, prolonged stress, negative thinking, exposure to prolonged hot or cold condi-tions, and serious emotional problems. Factors that slow down the aging process include a proper diet, skill in relaxing and managing stress, being physi-cally and mentally active, a positive outlook on life, and learning how to control unwanted emotions.
LO 4 Describe common diseases and major causes of death among older adults. Older people are much more susceptible to physical illnesses than are younger people, yet many older people are reasonably healthy. The two leading causes of death are diseases of the heart and cancer. Alzheimer’s disease affects many older adults.
LO 5 Understand the importance of placing the highest priority on self-care. Everyone (young, middle age, and older) should place a high priority on self-care. If social workers do not care for themselves, their ability to care for others will be sharply diminished or even depleted. Significantly, the intervention strategies that social workers should use for self-care are also precisely the strategies that social workers should convey to their clients so that these clients can improve their lives. Everyone needs physical exercise, mental activity,
a healthy sleep pattern, proper nutrition and diet, and to use quality stress management strategies. Three constructive stress management approaches
are (1) changing the distressing event, (2) chang-ing one’s thinking about the distressing event, and (3) taking one’s mind off the distressing event, usu-ally by thinking about something else. The chapter ends with a discussion of the effects
of stress, and describes a variety of stress manage-ment techniques.
COMPETENCY NOTES The following identifies where Educational Policy (EP) competencies and behaviors are discussed in the chapter.
EP 6a. Apply knowledge of human behavior and the social environment, person-in-environment, and other multidisciplinary theoretical frameworks to engage with clients and constituencies
EP 7b. Apply knowledge of human behavior and the social environment, person-in-environment and other multidisciplinary theoretical frameworks in the analysis of assessment data from clients and constituencies. (All of this chapter.) The content of this chapter is focused on social work students acquiring both of these behaviors in work-ing with older persons.
EP 8b. Apply knowledge of human behavior and the social environment, person-in-environment, and other multidisciplinary theoretical frameworks in interventions with
clients and constituencies (pp. 658–670). Material is presented on self-care interventions that social workers should use in their daily lives to care for themselves. These interventions should also be used by social workers to improve the lives of their clients.
EP 1 Demonstrate Ethical and Professional Behavior (pp. 646, 649, 653, 657) Ethical questions are posed.
WEB RESOURCES
See this text’s companion website at www.cengagebrain.com for learning tools such as chapter quizzes, videos, and more.
Copyright

Nelson, T. D. (2016). Promoting healthy aging by confronting ageism. American Psychologist, 71(4), 276–282

Ricks-Aherne, E. S., Wallace, C. L., & Kusmaul, N. (2020). Practice considerations for trauma-informed care at end of life. Journal of Social Work in End-of-Life and Palliative Care, 16(4), 313–329. https://doi.org/10.1080/15524256.2020.1819939

Rine, C. M. (2018). Is social work prepared for diversity in hospice and palliative care? Health and Social Work, 43(1), 41–50. https://doi.org/10.1093/hsw/hlx048
Required Media: Meet Ray: Age 41 to 68 Time Estimate: 2 minutes

Follow Rubric

Submit a 2- to 4-page paper that analyzes the role of the social worker in helping to plan end-of-life care.
28.35 (40.5%) – 31.5 (45%)
Response meets expectations and exceeds by expanding on the analysis with details, examples, and evidence from an additional research article (for a total of two). Response provides insightful comparisons and draws conclusions among the selected articles and the Learning Resources.

Include possible consideration of palliative care, euthanasia, hospice care, the living will and advanced directives, and other factors.
25.2 (36%) – 28 (40%)
Response meets expectations and exceeds by expanding upon the analysis to include three or more specific factors and/or details, examples, and evidence from an additional research article (for a total of two)

Writing
9.45 (13.5%) – 10.5 (15%)
Paper meets length requirements, meets expectations, is generally error free (two or fewer), and further exceeds by showcasing an exemplary scholarly voice to develop its message or communicate ideas.
Paper appropriately paraphrases sources, using one or less quotes. Presents polished APA Style. Citations, reference list, and paper formatting are generally error free (two or fewer).Tone and presentation of ideas are free from bias and objective, unless otherwise directed in the prompt.

MeetRay: Age 41-68

© 2021 Walden University, LLC 1

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,

276

–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),

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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
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Accepted December 10, 2015 �

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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 &
Palliative Care, 16:4, 313-329, DOI: 10.1080/15524256.2020.1819939

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Practice Considerations for Trauma-Informed Care at
End of Life

Elizabeth S. Ricks-Ahernea , Cara L. Wallacea , and Nancy Kusmaulb

aSchool of Social Work, College for Public Health and Social Justice, Saint Louis University, St.
Louis, Missouri, USA; bSchool of Social Work, University of Maryland Baltimore County, Baltimore,
Maryland, USA

ABSTRACT
Trauma is widespread, and its symptoms can adversely impact
wellbeing at end of life, a time when hospice seeks to maxi-
mize quality of life. This article reviews research on trauma at
end of life, provides an overview of trauma-informed princi-
ples, and explores possibilities for applying trauma-informed
care through an illustrative case study of a patient at end of
life. The case discussion applies findings from the literature
using Feldman’s Stepwise Psychosocial Palliative Care model
as a roadmap. As shown in the case study, trauma-related
symptoms may complicate care, making it an important sub-
ject of clinical attention for interdisciplinary hospice team
members. As part of this team, social workers are particularly
well suited to provide more targeted interventions where indi-
cated, though all members of the team should take a trauma-
informed approach. Lastly, this article reflects on the need for
organizations to take a systems-level approach when imple-
menting trauma-informed care and suggests implications for
practice through a universal approach to trauma and the
need for trauma-specific assessments and interventions at
end-of-life, along with areas for future research.

KEYWORDS
Hospice; palliative care;
social work; trauma

Patients at end of life are more likely than the general population to have
experienced trauma either in their past or more recently, due to medical
interventions and other experiences related to their life-limiting diagnosis
(Ganzel, 2018). The risk for having been exposed to at least one traumatic
event increases with age, as does the probability that a person may experi-
ence multiple traumatic events (Ramsey-Klawsnik & Miller, 2017), making
trauma an important potential factor for older adults and people at end of
life. Older adults (age 65 or older) constitute approximately 80% of hospice
patients and estimates show that about 70–90% of people in this age range
have experienced a prior traumatic event (Ganzel, 2018). Unmitigated
trauma-related symptoms of intrusion, avoidance, negative alterations in

CONTACT Cara L. Wallace 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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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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  • 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

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