Community Health Nursing

Department
Objectives
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
professionals
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 patients and their
families who are going through the dying process will have
their physical, psychological, social and spiritual needs
managed.
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
care.
Rules and regulations refers to issues regarding/mengenai
access to care, insurance coverage and the potential need to
hire/mgaji 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 wellbeing - The social structure and
integrity of the family may be threatened.
Becoming a burden to ones family is often a
concern to a patient. Expressions of sexuality
may change between partners as illness
progresses.
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
family.


Quality Of Life Issues
Spiritual well being Religion gives
expression to a persons beliefs, values,
and practices and provides answers to
questions regarding suffering, illness, pain
and death. Skillful attention to
maintaining a persons 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 anothers 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
Hospice care is a compassionate/mhibur 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/bmartabat and comfort, at home or in a
home-like setting.


- National Hospice and Palliative Care Organization


Hospice
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
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.,
prisons).

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/mhormati 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
quantity

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 Ladys Hospice in Dublin for the care of the dying

1900s: English Sister of Charity - St. Josephs Hospice

1967: Dr. Cicely Saunders - St. Christophers 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
medicine
- staff lack of skill towards palliative care
- doctors 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 patients
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
services
Bereavement services
Dietary counseling
Hospice Service Delivery
Covered Services
Medical consulting services
Physical therapy, occupational therapy, speech
therapy
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
setting
Paid hourly
More than 50%of care has to be provided by a
nurse
Hours do not need to be continuous
Clinical indications similar to general inpatient
care

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
perawatan
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 programs 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-givers
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/mnebak 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
stage
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
base

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/mcoba 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.

(W.H.O.)

Palliative care expanded
definition
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
population
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
function
Prolong life
Relief of suffering
Quality of life
Staying in control
A good death
Support for
families and loved
ones
Comparison of Hospice and Palliative Care Programs
Characteristic Hospice Palliative Care
Eligibility Prognosis < 6 months None required
Determined by program
Professional Services Interdisciplinary team:
Physician
Nurse
Social Worker
Pastoral counselor
Certified nursing assistants
Others as need
Inter or multidisciplinary team:
Physician
Nurse
Social Worker
Others as needed
Location of services Location of servicesComprehensive Home care LTCF
Inpatient
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
program
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
illnesses
Cancer
HIV
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.
Hospice
Curative / disease modifying
therapy

Time Course of Illness
Last
Weeks
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.
Hospice
Curative / disease modifying
therapy
Time course of illness Last
weeks of
life
Palliative care
Family
Bereavement
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.
Hospice
Curative / disease modifying
therapy
Time course of illness Last months of
life
Palliative care
Family
Bereavement
care