Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
Building Capacity :
empowerment to adjust,
Promote relief and support the Comprehensiv
comfort unavoidable suffering e Care
OMS 2002
Values
Respect
their
values
Active,
alive Integrity
conception
Patient
and
relatives
Trust Honesty
AIMS AND PRINCIPLES OF
PALLIATIVE CARE
• Respect the likes and dislikes, goals choices
of the dying person .
• Integrates the psychological and spiritual
aspects of patient care.
• Offers a support system to help patients live
as actively as possible until death.
• Patient centered rather than disease focused.
• Concerned with healing rather than curing.
• Affirms life & regards dying as normal
process i.e as a part of the life cycle.
Principles….
• TRADITIONAL MODEL:
DIAGN ADVANCED
OSIS DISEASE
TREAT
MENT
PALLIAT
IVE
CARE
TIME COURSE OF
ILLNESS
EVOLVING MODEL OF PALLIATIVE CARE
D
“Active Palliative E
Treatment” A
Care
T
H
Cure/Life-prolonging D
E
Be
Intent
rea
A
Palliative/
ve
T
me
Comfort Intent H
nt
EVOLVING MODEL OF PALLIATIVE
CARE
Cure/Life-
prolonging Intent
Death Bereavemen
t
Palliative/
Comfort Intent
Modified palliative care model
• Palliative care focuses on symptoms such
as pain, shortness of breath, fatigue,
constipation, nausea, loss of
appetite, difficulty sleeping and depression.
It also helps you gain the strength to carry
on with daily life. It improves your ability to
tolerate medical treatments. And it helps you
have more control over your care by
improving communication so that you can
better understand your choices
for treatment.
A palliative approach
• Aims:
- to improve the quality of life for
individuals with a life-limiting illness and
their families, by reducing their suffering
through early identification, assessment
and treatment of pain, physical, cultural,
psychological, social and spiritual needs
Myths about palliative care
2.PATIENT POPULATION:
Patients of all ages experiencing a
debilitating chronic or life threatening illness,
condition or injury.
3.PATIENT AND FAMILY CENTERED CARE:
The uniqueness of each patient and family is
respected. The patient family constitute the unit
of care.
4.TIMING OF PALLIATIVE CARE:
It ideally begins at the time of diagnosis of a
life threatening or debilitating condition and
continues through cure, or until death and into
the family’s bereavement period.
Elements…..
5.COMPREHENSIVE CARE:
Palliative care employs multidimensional
assessment to identify and relieve sufferings
through the prevention or alleviation of physical,
psychological, social and spiritual distress.
6.INTERDISCIPLINARY TEAM:
Team work is an integral part of the
philosophy of palliative care. Require the
expertise of various providers in order to
adequately assess and treat the complex needs
of seriously ill patients and their families.
Elements….
7. COMMUNICATION SKILLS:
Effective communication skills are
requisite in palliative care. These includes
appropriate and effective sharing of
information, active listening, determination
of goals and preferences, assistance with
medical decision making, and effective
communication with all individuals involved
in the care of patients and their families.
Elements….
8. SKILL IN CARE OF THE DYING AND
BEREAVED:
Team must be knowledgeable and skilled in
providing care for the dying and the bereaved.
9.CONTINUITY OF CARE ACROSS SETTINGS:
Palliative care is integral to all health care
delivery system settings (hospital, emergency
dept, nursing homes, home care, assisted living
facilities, outpatient and non traditional
environments such as schools. The palliative
care team collaborates with professional and
informal care givers in each of these settings.
Elements….
PHYSICA
L
SPRITUA SOCIALL
L
EMOTIO
NALAL
PALLIATIVE CARE NURSING
• Reflects whole aspects care. It combines the
humanistic approach with a scientific approach.
• Physical wellbeing: Free of pain and discomfort,
functional ability etc.,
• Psychological well being: free from
anxiety/fears, ability to experience happiness
etc.,
• Social well being: Purposeful life role, free from
financial burden.
• Spiritual well being: feelings of hope, meaning to
life.
Physical needs
The ability
• To field and respond to sometimes profound
or rhetorical questions about life and death
• To know when to say nothing, because that is
the most appropriate response;
• To use therapeutic comforting touch with
confidence;
• To challenge colleagues who may wish to
deny patients information; and, perhaps
• To discuss the imminent death of a relative
with families
TEAM WORK SKILLS
Pharmacist
Palliative
Care Nurse
Natural
Therapist • The growth of the
Dietician Occupational
Therapist nursing role within
these teams has
Domiciliary
Care
Meals on
Paramedical been dramatic and
Aide
Wheels
continues to
General represent a much
Funeral Practitioner
Director Medical
Specialists
admired model of
working .
Volunteers
Bereavement
Social Worker Support Worker
Spiritual
Counsellor
PHYSICAL CARE SKILLS
An ability
• work with families,
• Anticipating their needs,
• Putting them in touch with services and
• Supporting them when appropriate
INTRAPERSONAL SKILLS
-care goals
-symptom management
-advance care planning
-financial planning
-family support
-spiritual care
-functional status support and
rehabilitation
-co morbid disease management
Role of nurse in palliative care
connecting empowering
Doing for
Preserving Finding
integrity meaning
Palliative care nursing
Connecting
• Making a connection
– establishing a rapport
– building up trust
• Maintaining a connection
– being available, spending time, sharing secrets, sharing
self, maintaining trust.
• encouraging
• defusing
– dealing with negative feelings
• mending
– - facilitating healing
• giving information
Palliative care nursing
• Confronting own
mortality
• Burnout
• Supporting
Colleagues
Hope
Comfort
Attachment
• Comfort
Assessment, psychosocial issues.
• Attachment
Be there, caring environment, promote
communication
• Worth
Explore previous experience, future
wishes,enhance independence
The tyrannies of palliative care
(Aranda, 2001)
• Niceness
• Glowing
testimonial
• Depressing/Sad
• Passive
Care of the family
• Including patient & significant others in
decision making r/t patient care.
• Attending to their grief, worries, preparing
them for the loss
• Communicating with family facilitates to
1. Improve planning & coping.
2. Encourage realistic goals & autonomy.
3. Reduce uncertainty.
4. Maintain trust.
BARRIERS IN AVAILING PALLIATIVE
CARE
• Inadequate training of health care personnel
in symptom management & other End of life
skills.
• Inadequate standards of care
• Lack of accountability in the care of dying
patients.
• Lack of appropriate information & resources
• Lack of investment in research pertaining to
palliative & end of life care.
Barriers….
• There are over 135 hospice and palliative
care services in 16 states in India,
concentrated in large cities.
• There are 19 states or Union territories in
which no palliative care provision was
identified.
• Barriers to the development of palliative care
include – poverty, population density,
geographic distances, opioid availability,
work force development and limited national
palliative care policy.
Palliative care developments
around
the world
• The estimated number of persons needing
palliative care is just over 33 million.
• Death also affects family members and
with one to two persons shouldering the
heavy daily routine of care, this gives a
conservative
figure of 100 million people who would
benefit by the availability of basic palliative
care.
• The rise of hospice and palliative care in
its distinctly modern guise (combining
clinical care, education, and research) is
generally traced to the late 1950s and early
1960s.
• A 1999 listing of palliative care organizations
with a global perspective(43) also includes:
• British Aid for Hospices Abroad;
• the Hospice Education Institute;
• and the WHO Collaborating Centre for
Palliative Cancer Care, Oxford.
• Other groups include WHO experts and
international collaborators and WHO
collaborating centres in Milan, Saitama, and
Wisconsin.
• It is estimated that hospice or palliative
care services now exist, or are under
development,
on every continent of the world, in around
100 countries. The total number of hospice
or palliative care initiatives is in excess of
8000 and these include inpatient units,
hospital-based services, community-based
teams,
day care centres, and other modes of
delivery.
International associations and initiatives in
support of
hospice-palliative care
Malays 30 22 78 25 24
ia
New 42 4 7461 83
zeland
Singap 10 4 4237 66
ore
Taiwan 28 22 32000 5
• India, with one billion inhabitants, contains
one-sixth of the world’s population and is
a country of striking ethnic, cultural, and
religious diversity.
• Around one million new cases of cancer
occur each year; and the vast majority are
incurable at diagnosis.
• An Indian Association of Palliative Care was
formed in 1994 with the support of WHO and by 2000
there were nearly 100 palliative care initiatives
across the country.
• A detailed analysis of opioid availability problems in
India shows that approximately one million people
experience cancer pain in India every year. There
was no official source of morphine in India in the
1980s, only ‘pump-priming’ supplies for specific
centres and projects, so levels of morphine
consumption for pain relief were low.
• By 1997, they reached a low of just 18 kg and per
capita consumption ranked 113th among 131
countries around the world.
• There is evidence that governments at many
levels (national, provincial,federal, and state)
have begun to recognize the importance of
pain relief and palliative care through the
development of officially formulated policies.
• Palliative care has also been incorporated into
several cancer control and some HIV/AIDS
programmes.
• Some of these policies have had real impact,
others have been ‘paper tigers’ with little
effect. Often, failure results from the lack of a
comprehensive strategy, for example,
omitting the community system.
Example of a suggested essential drug list for
palliative care
Fluid retention
Furosemide
Spironolactone
Oral candidiasis
Cotrimoxazole
Ketoconazole
Nystatin
Nausea and vomiting
Dimenhydrinate
Holoperidol
Metoclopramide
Prednisolone
Prochlorperazine
WHO has produced guidelines for their
handling
Any essential drug list for palliative care will
include opioid drugs
• Legal issues: doctors, nurses, and pharmacists should be
empowered legally to prescribe, dispense, and administer opioids
to patients in accordance with their needs.
• Accountability: opioids must be dispensed for medical use only,
with responsibility in law.
• Prescription: a prescription for opioids should contain at least the
following
information:
patient’s name,
date of prescription,
drug name, dosage, strength and form, quantity prescribed,
instructions for use,
the doctor’s name and business address,
the doctor’s signature.
• Accessibility: opioids should be available in locations that will be
accessible
to as many patients as possible.
QUALITY OF LIFE:
It is the state of well being that is composite
of two components.
1.The ability to perform every day activities that
reflect physical, psychological and social well
being and
2.Patient satisfaction with level of functioning and
control of the disease. It includes like well being,
satisfaction, happiness and physical
functioning.
Eg. Karnofsky performance status scale is used to
assess the functional performance of cancer
patients.
ECOG-PS (Eastern co-operative oncology group
performance status)
HOSPICE CARE
Who can receive the Any one with a serious Someone with an illness
care? illness, regardless of life with a life expectancy
expectancy, can receive measured in months or
palliative care. days
not years