END-OF-LIFE CARE
Chapter 23
Handbook of
Health Social
Work, 2 nd
Edition
CHAPTER OBJECTIVES
 Chapter Objectives:
 Define end-of-life care and palliative care at end-of-life.
 Describe the roles that social workers can play in end -of-life care.
 Describe the importance of effective communication so that patient
and family needs are expressed and appropriate end -of-life care is
facilitated.
 Understand the process of end-of-life planning, including advance
directives, to promote informed choices, and help patients and
families to clarify and communicate their preferences.
 Demonstrate an understanding of factors that influence the death &
dying experience of cultural groups & disadvantaged persons at the
end of life.
 Describe contemporary grief and loss theories.
PALLIATIVE CARE
 Interdisciplinary care model that focuses on the
comprehensive management of physical,
psychological, and existential distress.
 Defined as “the active total care of patients whose
disease is not responsive to curative treatment.”
 The goal of palliative care is the achievement of the
best possible quality of life for patients and their
families.
PALLIATIVE CARE MODEL
 The model applies throughout the course of illness and
attempts to address the physical, psychosocial, and spiritual
concerns that af fect both the quality of life and the quality of
dying for patients with life -limiting illnesses at any phase of
the disease.
 Includes interventions, respects family values and decisions.
 Social worker can educate the family about expected
symptoms and their management, clarify information about
medications and medical procedures, facilitate
communications with the healthcare team, help them make
decisions about practical and financial changes, and teach
them ef fective coping skills.
HOSPICE
 Emphasis of hospice care is on comfort at the end of life
through control of pain and other symptoms.
 Rather than relying on curative interventions & technology it
focuses on the natural approaches.
 Hospice care focuses on caring, not curing, and in many cases
is provided in the patient’s home.
 Hospice care is also provided in hospice centers, hospitals,
nursing homes, and other long term care facilities.
SIGNIFICANT BARRIERS
 Barriers to effective end-of-life care exist and
include: attitudes about death and dying,
inconsistent communication between patients and
the healthcare team, insufficient training of
healthcare providers, physicians’ inexperience with
providing care, lack of access to care, and
inconsistent reimbursement.
RECOMMENDATIONS
 Reliable & skillful supportive care should be provided to
patients & families facing the end of life.
 Healthcare professionals should know and use ef fective
interventions to prevent and relieve pain and other symptoms.
 Palliative care should be recognized as a defined area of
expertise, education, and research.
 The public should be educated about end -of-life care and
advance care planning.
 Tools should be developed for improving patients’ quality of
life, and healthcare organizations should be required to use
them.
INTERDISCIPLINARY TEAMWORK
 Individuals at the end of life care often move between various
healthcare settings, from home to acute or long term care
facilities, outpatient or inpatient, home health care, and
hospice settings.
 The involvement of an interdisciplinary care team is an
excellent solution to care coordination problems. These
include: Patient, Patient’s family or caregiver, palliative care
or hospice physician, patient’s personal physician, nurses,
social workers, clergy, pharmacists, home health aides,
trained volunteers, and physical, occupational and speech
therapists, if needed.
COMMUNICATION ABOUT DEATH AND
DYING
 Patients, families, and social workers may be influenced by
misconceptions about death and dying.
 To communicate clearly at the patient’s end of life, social
workers must focus on providing clinical care that supports
the patient and underlying family values and meanings.
 Open ended questions are useful in gathering information
from the patient and the family.
 Listening to the patient and family, sharing reflective
comments about the dif ficulty of the situation with them,
acknowledging their fears and apprehensions, showing
concern and looking into their eyes are simple actions which
communicate understanding.
END-OF-LIFE CARE FOR A CHILD
 It is important that the individual social worker’s professional
and personal challenges are addressed in caring for
terminally ill children and their families.
 The key for the social worker is to recognize the critical role
of encouraging and supporting parents in expressing their
true feelings, concerns, and goals.
 Children need to know that they are not responsible for their
illnesses.
 Sharing information in a way that is cognitively and
developmentally appropriate is essential.
SPIRITUALIT Y
 Facing death often forces individuals to consider spiritual or
existential issues that can be central to end -of-life care.
 Social workers must be sensitive to these concerns in their
patients and be willing to asset with their spiritual
explorations.
 When patients and caregivers express religious and spiritual
concerns, the social workers role is to listen so that she can
help them find ways to address their needs.
DIVERSIT Y AND HEALTH DISPARITIES
 Death and dying among members of dif ferent racial or ethnic
groups and disadvantaged persons pose tremendous
challenges to social workers.
 Cultural and economic factors play a significant part in health
care, health care decision making, and end -of-life
experiences.
 Health care is less accessible to disadvantages individuals,
including people of color, immigrants, older individuals,
children, women, the poor and uninsured, and those who are
in institutions.
CULTURE
 Culture influences what is considered a health problem, how
symptoms are expressed and discussed, how healthcare
information is received, what type of care should be given and
how rights and protections are exercised.
 The need to provide culturally competent care has been
emphasized in many arenas, that is to respect and maintain
sensitivity to issues related to an individuals culture, race,
gender, sexual orientation, and socioeconomic status while
providing optimal end -of-life care.
CULTURE COMPETENCE
 Cultural competence is defined by the NASW, as the “process
by which individuals and systems respond respectfully and
ef fectively to people of all cultures, languages, classes, races,
ethnic backgrounds, religions, and other diversity factors in a
manner that af firms, and values, the worth of individuals,
families, and communities and protects and preserves the
dignity of each.”
 The standards address the following areas: ethics and values,
self-awareness, cross-cultural knowledge, cross -cultural skills,
service delivery, empower point and advocacy, diverse
workforce, professional education, language diversity, and
cross-cultural leadership.
ADVANCE DIRECTIVES
• Advance directives are written documents completed by the
individual that specify treatment preferences for healthcare
decision making, particularly end -of-life care and whether to
use life-sustaining treatment.
• The most common advance directives are the health care
proxy( durable power of attorney for health care) and living
will.
• Multiple types of durable power or attorney are available,
covering business, financial, or healthcare decisions.
LIVING WILL
 Living will is a directive to a physician and healthcare team
that statesperson’s wishes about what life -prolonging
treatment should be provided or withheld should they lose the
ability to communicate those wishes.
 Life-prolonging therapies include mechanical ventilation,
blood transfusions, dialysis, antibiotics, and artificially
provided nutrition and hydration.
 Social workers may need to be proactive in educating
disadvantaged persons about the value of advance directives
and help them with end -of-care planning.
UNDERSTANDING LOSS
 Understanding the common, natural responses to loss can
facilitate a social worker’s ability to prepare patients and
families with anticipatory guidance and help them normalize
the possible and often uncomfortable expressions of grief.
 Loss is often thought of in relation to the death of a
significant loved or valued person. This can include one’s self,
spouse or partner, siblings, children, and other relatives.
 For the person who is dying, the end of life also brings the
loss of part of the self, which includes physical, psychosocial,
and social losses.
GRIEF
 Conceptualized grief falls into three broad categories:
avoidance, confrontation, and reestablishment.
 The tasks of the griever are then to: 1 .)Acknowledge, accept
and understand the reality of loss. 2.) Experience the pain of
the grief and react to the separation from which was lost.
3.)Adapt to a new way of life. 4.) Reinvest in a new way of life.
 Grievers may feel overwhelmed by the intensity of their
emotions and exhausted by the process.
COPE
 Factors that influence how individuals cope with loss include
childhood, adolescence, and adult experiences of loss and
how recently those losses occurred; successful or
unsuccessful resolution of losses; previous mental health
problems; and any physical health problems, life crises, or life
changes prior to the current loss.
 Grief counseling involves normalizing the grieving person’s
feelings and behavior and helping the griever identify and
express his feelings, actualize the loss, facilitate his ability to
live without the deceased person, reengage with life, and
provide continuing support throughout the process.
ANTICIPATORY MOURNING
 Anticipatory mourning is, “the phenomenon encompassing
seven generic operations grief and mourning, coping,
interaction, psychosocial reorganization, planning, balancing
conflicting demands, and facilitating an appropriate death
that, within a context of adaptational demands caused by the
experiences of loss and trauma, is stimulated in response to
the awareness of life -threatening or terminal illness in oneself
or a significant other and the recognition of associated losses
in the past, present, and future.”
COMPLICATED GRIEF
 Four complicated grief reactions:
Chronic grief- that is prolonged, is excessive in duration,
and never comes to a satisfactory conclusion.
Delayed grief- is an emotional that has been “inhibited,
suppressed, or postponed”. A subsequent loss may elicit an
exaggerated reaction because the bereaved is grieving for two
losses.
Exaggerated grief- occurs when feelings of fear,
hopelessness, depression, or other symptoms become so
excessive that they interfere with the daily existence of the
bereaved.
Masked grief- includes symptoms and behaviors
experienced by a person who does not recognize the fact that
they are related to loss.
DISENFRANCHISED GRIEF
• Grief experienced in connection with a loss that is not socially
acknowledged, publicly shared, or supported through using
rituals.
• It is experienced when the relationship between the deceased
person and the bereaved survivor is not socially sanctioned the person is suf fering the loss is given little or no
opportunity to mourn publicly.
• Social workers who become close to patients who die can also
be disenfranchised mourners.
SOCIAL WORK ROLE
 Social work involvement in hospice operations is
correlated significantly with reduced patient care
costs.
 NASW began an initiative to increase social worker’s
awareness of end-of-life issues, to create and
advocate for more education and training
opportunities in the field, and to promote the value
of social work in palliative care, hospice care and
other end-of-life practice areas.
COMPASSION FATIGUE
 Social work and other healthcare professionals who work in
end-of-life care experience a great deal of trauma of illness
and death.
 Compassion fatigue= also referred to secondary trauma, is
the natural, predictable, treatable, and preventable stress
resulting from helping a traumatized or suf fering person.
 Some professionals may be more vulnerable than others to
compassion fatigue due to, for example, multiple losses,
unresolved personal trauma, or insuf ficient recovery time.
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