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Community Health Nursing

Direct student will be able to Describe:
 End Of Life Care
 Quality Of Life Issues
 Concept hospice care
 Concept palliative care

End Of Life Care
 Lack of knowledge of healthcare
 Aging of the population
 Realities of life limiting Diseases
 Delayed access to hospice and
palliative care
 Rules and Regulations

Impediments/halangan that impact the care
provided to patients at end of life:

 Lack of knowledge on the part of healthcare professionals
has a significant impact on how well the patient’s and their
families who are going through the dying process will have
their physical, psychological, social and spiritual needs
 Aging of the population refers to the fact that by the year
2030, there will be approximately 70 million individuals
reaching the age of 65 or greater, more than double the
number in 1997 (Administration on Aging, 2000). With this
increased life expectancy, there will be a continued rise in the
elderly having to cope with concurrent/berbarengan chronic
illnesses and their associated physical, social and
psychological difficulties.

End Of Life Care
 Realities of life limiting disease - refers to the failure to
acknowledge/mengakui that the limits of medicine may lead
to futile/gagal care. Use of aggressive curative treatments
can prolong the dying process and contribute to physical
and emotional distress of the patient.
 Delayed access to hospice and palliative care refers to the
need for more timely referrals by healthcare professionals to
these services in order for patients and their families to
reap/memperoleh the full benefit of hospice and palliative
 Rules and regulations refers to issues regarding/mengenai
access to care, insurance coverage and the potential need to
hire/m’gaji a caregiver from outside the family which can
contribute to financial barriers to care.

Quality Of Life Issues
Physical well-being
Psychological well-being
Social well-being
Spiritual well-being
Concept of Suffering

Quality Of Life Issues
 Quality of life differs from person to person.
The patient is the only one who can define
quality of life which is based on his or her
own life experiences, values and beliefs. It is
important to consider each of the dimensions
described here from the patient and family
perspective. Quality of life must be
considered throughout/keseluruhan the illness
and end of life period to include the time of
death and bereavement period.

Quality Of Life Issues
 Physical well-being – The physical well-being of the
patient is affected by various symptoms due to organic
and metabolic changes, disease progression and
debilitation/kelemahan. Physical aspects include:
functional ability, sleep, rest, and appetite. Pain is one
of the primary concerns of terminally ill patients and
their family members or caregivers. Family members
can develop or may have existing physical needs that
impact their ability to care for the patient, as well as
their ability to care for themselves. Physical
symptoms can manifest during the bereavement period
as well.

Quality Of Life Issues
 Psychological well-being – Patients
experience a wide range of emotions and
psychological issues/concerns, and losses
( i.e., body image, role/relationship changes,
etc…) throughout their terminal illness
journey and at the end of life.
Communication and support are important
components in the management of the
psychological domain.

Quality Of Life Issues
 Social well–being - The social structure and
integrity of the family may be threatened.
Becoming a burden to one’s family is often a
concern to a patient. Expressions of sexuality
may change between partners as illness
 Children may show their emotional concerns by
isolating themselves or by acting out in school or
at home. Financial concerns may arise due to
loss of income. Friends and extended family stop
visiting, creating social isolation for patient and

Quality Of Life Issues
 Spiritual well – being – Religion gives
expression to a person’s beliefs, values,
and practices and provides answers to
questions regarding suffering, illness, pain
and death. Skillful attention to
maintaining a person’s unique meaning of
hope can enhance quality of life and help
make the dying process more meaningful
to the patient and family.
Quality Of Life Issues
 Concept of Suffering - Suffering is a highly
personal experience and depends on the
significance or personal meaning of events and
losses. It is a state of severe distress that threatens
the intactness/keutuhan of the individual. Suffering
may be associated with an event(s), fear of physical
distress, issues regarding family relationships and
other roles, perceptions of self,witnessing
/mengalami another’s distress, an inappropriate
focus on cure, etc.

Quality Of Life Issues
 It is imperative/penting sekali that
healthcare respond to the psychological and
spiritual needs of patients and families
coping with life-threatening illnesses to
avoid/menghindari increasing their
suffering and isolation.

End of Life Care
Hospice Care
Palliative Care
Definition of Hospice Care:
 “hospes” Latin for “host” or “guest”
 Origins traced to early Middle ages as a
way station for travelers between Europe,
Africa, and the Middle East
 “Hospice care is a compassionate/m’hibur orang
method of caring for terminally ill people.
Hospice is a medically directed, interdisciplinary
team-managed program of services that focuses
on the patient/family as the unit of care. Hospice
care is palliative rather than curative, with an
emphasis on pain and symptom control, so that a
person may live the last days of life fully, with
dignity/b’martabat and comfort, at home or in a
home-like setting”.

- National Hospice and Palliative Care Organization

• Hospice care is the support and care for persons
in the final phases of an incurable disease so that
they may live as fully and comfortably as
possible (NHPCO, 2000).
• Hospice is appropriate when the natural course
of an illness would result in a life expectancy of 6
months or less. Hospice also supports the
surviving family through the dying and
bereavement process (Egan & Labyak, 2001).

• Hospice provides comprehensive palliative,
medical and supportive services across a
variety of settings and is based on the
understanding that dying is a part of the
normal life cycle. Care can be provided in
the home, in residential facilities, long-term
care facilities and other settings (i.e.,

Definition of Hospice Care:
 A reimbursement benefit for patients who have a
limited prognosis or life expectancy
 Primarily community-based
 Care for severely ill patients and their families
 Team of professionals and trained volunteers
 Focus is on care, not cure.
 Goals:
Relief of pain and other symptoms
Psycho-social support

Definition of Hospice Care:
 hospice care is a total patient care program
with focus on the highest
 possible quality of life for the terminally
ill patients covering
 all their physical, psychological, social
and spiritual needs.
 the care is also extended to bereavement
perio of their families

Main concept of Hospice:

 Respect/m’hormati life and human rights
 Nothing can be done to cure, but a lot can be
done to care
 Respect death is a natural process; therefore, not
hasten/’cepat nor postpone/’nunda death
 Assist person die in peace and with dignity
 Concern quality of life instead/dari pada of

History of Hospice:
Middle ages:
Hospice rooted in religious institutions which provided
hospitalization for the sick, dying and grieving persons
(The words hospital, hostel, and hospice were used interchangeably)

Late 18th:
Sister Mary Aikenhead of the Irish Sisters of Charit
opened Our Lady’s Hospice in Dublin for the care of the dying

1900’s: English Sister of Charity - St. Joseph’s Hospice

1967: Dr. Cicely Saunders - St. Christopher’s Hospice in London
(since then, hospice is more than a place, a philosophy an
a movement)
Social factors for the development of
hospice care

a. Prolongation of dying process:
high medical technology and increased age among
the population.
high incidence of mortality by chronic and
degenerative disease
Dying to death trajectory/jalan is usually long more
terminally ill patients in the society. Some of the
countries allow the use of active euthanasia while
the hospice concept is the third chose in facing
terminal disease.
b. bureaucratization

 Modern dying takes place in big health care
institutions where:
- focus curing, death is a failure in modern
- staff lack of skill towards palliative care
- doctor’s decision dominating
- rules lack of concern of human needs
- environment is busy

 “The dying patients were often forced to spend their last days lying in sterile
hospital beds, full of tubes, very often sedated and separated from families.
They received very little attention from the care professionals.”
 Dr. Cecily Saunders

c. Secularization

- materialistic world, too busy to think
about meaning of life and death

- less religious faith

- improvement of standard of living,
openness to the worldwide trend and
educational level among the population

Hospice Care Provides:
 Patient control over decisions about care
 Family involvement
 Specialized services
 Pharmaceuticals and home supplies/equipment
 Reliogion support
 Grief counseling
 Volunteer support
 Option for patient to die at home
Hospice Service Delivery
a. Modes of hospice service delivery
-Independent Hospice
-Hospital Based Hospice
-Consultative Team
-Home Care
-Day Care

Hospice Service Delivery
b. Doctor / nurse
 Ensure consistency of care
 Increase trust and rapport
 Increase understanding

Hospice Service Delivery
Levels of Care
 Routine Home Care
 Basic services provided in the patient’s
primary place of residence, including LTCF
 Continuous Home Care
 General In-patient Care
 Respite In-patient Care

Hospice Service Delivery
Covered Services
 Interdisciplinary Team care:
 Nursing services
 Medical social services
 Religion counseling
 Medical direction and physician care plan oversight
 Home health aide and homemaking/caregiver
 Bereavement services
 Dietary counseling
Hospice Service Delivery
Covered Services
 Medical consulting services
 Physical therapy, occupational therapy, speech
 Drugs and biologicals
 Durable Medical Equipment
 Medical supplies
 Laboratory and diagnostic studies
Hospice Service Delivery
Continuous Care
 8-24 hours of care per day provided in the home
 Paid hourly
 More than 50%of care has to be provided by a
 Hours do not need to be “continuous”
 Clinical indications similar to general inpatient

Hospice Service Delivery
General Inpatient Care
 Care that cannot be managed in the home setting
 Per Diem/kunjungan rate
 May be provided in a variety of venues/tempat
 Free-standing
 Leased/sewa space in a hospital, LTCF
 Contract bed in hospital or LTCF
 Reimbursement limited to no more than 20% of a
hospice program’s billable days of care
Hospice Service Delivery
Indications for General Inpatient Care and
Continuous Care
 Uncontrolled pain
 Respiratory distress
 Severe decubitus ulcers or other skin lesions
 Intractable nausea, emesis
 Other physical symptoms not controllable on a
routine level of care
 Severe Psychosocial Symptoms or acute
breakdown in family dynamics

Hospice Service Delivery
Respite Inpatient Care
 Care provided to give the family care-giver’s
respite from the rigors/ketidaktahuan of taking
care of the patient
 Per Diem rate
 Limited to a maximum of 5 days at any one time
 Under-utilized due to poor reimbursement rate
compared to other levels of care

A shift from hospice care shift to
palliative care?

 Difficult to speculate/m’nebak the life span/massa
 Hospice philosophy is a concept applicable to other
settings instead/malahan of restricted to a building,
and its knowledge is not only applicable to terminal
 There are myths of Hospice Care
= patient cannot be discharged
= hospice care is not available in general hospital
= not a modern health care center with scientific

Definition Palliative Care:

 Palliative care
 “palliare” latin: to cloak
(menyelubungi/jubah panjang  melindungi)
 “care provided to treat the symptoms of an
illness without curing or affecting the
underlying illness”
 Examples
 insulin “palliates” diabetes
 lasix “palliates” congestive heart failure
Palliative care – definition 1
“Palliative care seeks/m’coba to prevent,
relieve, reduce or soothe/’ringankan the
symptoms of disease or disorder without
effecting a cure… Palliative care in this broad
sense/pengertian is not restricted to those who
are dying or those enrolled in hospice
programs… It attends closely to the
emotional, spiritual, and practical needs and
goals of patients and those close to them.”
Institute of Medicine 1998
Palliative Care: definition 2
“The active total care of patients whose disease
is not responsive to curative treatment.
Control of pain, of other symptoms, and of
psychological, social and spiritual problems,
is paramount. The goal of palliative care is
achievement of the best quality of life for
patients and their families. Many aspects of
palliative care are also applicable earlier in
the course of the illness in conjunction with
anticancer treatment.”


Palliative care – expanded
 Affirms/memperkokoh life,
regards/’hormati dying as a normal process
 Neither hastens nor postpones death
 Provides relief from pain, other symptoms
 Integrates psychological and spiritual care
 Interdisciplinary team
 Support system for the family
WHO 1990
Definition Palliative Care:
Palliative Care
 Extends principles of hospice care to a broader
 Earlier in disease course than hospice
 Comprehensive and specialized
 Pain and symptom management, advance care
planning, psychosocial and spiritual support,
coordination of care
 Definition may be able to be expanded to all
aspects of medical care

Potential Goals of Care
 Cure of disease
 Avoidance/’hindari
of premature death
 Maintenance or
improvement in
 Prolong life
 Relief of suffering
 Quality of life
 Staying in control
 A good death
 Support for
families and loved
Comparison of Hospice and Palliative Care Programs
Characteristic Hospice Palliative Care
Eligibility Prognosis < 6 months None required
Determined by program
Professional Services Interdisciplinary team:
Social Worker
Pastoral counselor
Certified nursing assistants
Others as need
Inter or multidisciplinary team:
Social Worker
Others as needed
Location of services Location of servicesComprehensive Home care LTCF
Based on program
Some Comprehensive
Some inpatient only
Some LTCF based
Some require networking between hospital and
hospice or home based home-health programs
Funding Funding Medicare Hospice Benefit State Medicaid
programs HMOs and commercial insurers Charity (not for
profit hospices)
Traditional hospital coverage Traditional home care
coverage Support from hospitals and hospice partner
organizations Grants Charity
Palliative Care Programs
Hospital Based Palliative Care
 Reimbursement through traditional system
 No specific reimbursement stream/arah for
“palliative care”
 Physician consults
 DRGs for hospital care
 Savings by reducing ICU and inpatient days
 Improved quality of inpatient care
 May partner with a hospice to provide more
comprehensive services

Palliative Care Programs
Long-term Care Facility Palliative Care
 Need for palliative care for patients
accessing Medicare Part A for Nursing
Home care
 Physician Consult services
 Partnerships with hospices
Palliative Care Programs
Home-Based Palliative Care
 Home health agency services
 May be independent or affiliated with a hospice
 Patients need to be Home-care eligible
 Pre-hospice “Bridge” programs
 Affiliated with hospice
 Reimbursed as Home Health agencies
 Hospice or hospice trained staff

Palliative Care Programs
Home-Based Palliative Care
 Pre-hospice “Bridge” programs
 Affiliated with hospice and reimbursed as HHA
 Hospice or hospice trained staff
 Supplementary funding for non-covered services
 Longer median survival (52 vs. 20 days)
 Patients living > 6 months
 Patients were hospice eligible
 May have desired treatment hospice was
unwilling/enggan to provide
 No data on why patients did not elect hospice

Palliative Care Programs
Disease-Based Palliative Care
 Focused on special needs of patients with
specific chronic and potentially terminal
 Cancer
 Pediatrics
 Dementia

Symptoms-Based Palliative Care

Cancer Other

Pain 84% 67%
Trouble breathing 47% 49%
Nausea and vomiting 51% 27%
Sleeplessness 51% 36%
Confusion 33% 38%
Depression 38% 36%
Loss of appetite 71% 38%
Constipation 47% 32%
Bedsores 28% 14%
Incontinence 37% 33%

Seale and Cartwright, 1994

Hospice/Palliative Care Interface
Traditional Model of Health Care
From Emanuel, von Gunten, Ferris. Plenary 3:EPEC series and reproduced in Kinzbrunner.
Palliative Care Perspectives, Chapter 1 in Kuebler, Davis, Moore Palliative Practices,
An Interdisciplinary Approach, 2005, p. 21.
Curative / disease modifying

Time Course of Illness
of life
Family Bereave-
ment care
Hospice/Palliative Care Interface
Integrated Palliative Care Model
Modified From Emanuel, von Gunten, Ferris. Plenary 3:EPEC series and reproduced in
Kinzbrunner. Palliative Care Perspectives, Chapter 1 in Kuebler, Davis, Moore
Palliative Practices, An Interdisciplinary Approach, 2005, p. 22.
Curative / disease modifying
Time course of illness Last
weeks of
Palliative care
Hospice/Palliative Care Interface
Integrating Palliative Care and Hospice
Modified From Emanuel, von Gunten, Ferris. Plenary 3:EPEC series and reproduced in
Kinzbrunner. Palliative Care Perspectives, Chapter 1 in Kuebler, Davis, Moore
Palliative Practices, An Interdisciplinary Approach, 2005, p. 22.
Curative / disease modifying
Time course of illness Last months of
Palliative care