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Basic Principlesin
Palliative Care
Amal Dweib KhleifRN, BSN, ON, Palliative Care Nurse
Al-Sadeel SocietyPalliative Care for Cancer Patients
Objective• Facts.• The professional caregiver attitude.• Why we need palliative care.• What’s really palliative care mean?• Ethical issues.• The holistic assessment.• The Interdisciplinary Team.• Barriers in palliative care.• National policy for palliative care.
The scientific material was adopted from: the presentation (principles and issues in palliative care)
for Abu-Rakiah Riad.
FACTS
• All of us well die.
• Death does not meaning staff failure.
• We spend our resources to prolong life.
Are we meeting our patients and their families wishes when they enter end of life pathway ?
Why we need palliative care?• inappropriate communication
between physician and patient and family.
• inappropriate pain control.• Load of symptoms in the end of life
.• Majority of diagnosed patient are
in late stage .• Mechanical medicine, use in the
technology and rise in the life expectancy.
• inappropriate communication between physician and patient and family.
• inappropriate pain control.• Load of symptoms in the end of life
.• Majority of diagnosed patient are
in late stage .• Mechanical medicine, use in the
technology and rise in the life expectancy.
Symptoms at the End of Life: Cancer vs. Other Causes of Death
Cancer OthersPain 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
The Nature of Suffering and the Goals of Medicine
The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that , not only fails to relieve suffering but becomes a source of suffering itself.
Cassell, Eric NEJM 1982;306:639-45.
Is really quality of life important?
The incidence of death at hospital near 80%
Restoring the Balance
Life Prolonging Care
Palliative Care
New concept
• THE TERMINALLY PATIENT.• SHIFTING THE GOAL OF THE
TREATMENT.• GOOD DEATH.• COMFORT AND SUFFERING.• TRUTH TELLING.• QUALITY OF LIFE• THE PLACE OF THE DEATH.
Palliative care
• Palliative Care is defined by the World Health Organization (WHO) as “the active total care of the patients and their families by a multi-professional team at a time when cure is not an option and life expectancy is relatively short. It responds to physical, psychological, social and spiritual needs, and extends if necessary to support in bereavement.”
(WHO1990)
Palliative careTreatment approach that improves quality of life of patient and their family members, that deal to the diseases that threaten on life, by prevention and alleviation of the suffering by means of early detection and professional estimation of pain and additional symptoms, bodily psychosocial and spiritual.
(WHO 2002)
PRINCIPLES
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten nor postpone death;
• integrates the psychological and spiritual aspects of patient care;
PRINCIPLES
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patients illness and in their own bereavement;
• distressing clinical complications.
PRINCIPLES
• uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy,
OLD MODEL OF CARE
CURATIVE
PROLONGATION OF LIFE
DIAGNOSIS
PALLIATIVE
RELIEF OF SUFFERING
DD
ABRUPT TRANSITION TO HOSPICE
DEATH
MODERN MODEL OF CARE
Curative Treatment(Cancer, CHF, COPD, AIDS,
Dementia debilitating Neurological diseases …)
Palliative Treatment
Bereavement CareHospice
DeathDiagnosis
Most Recent MODEL OF CARE
Continuum of Care
Cure vs. Palliation
• Cure– fundamental hope is eradication of
disease – assumes cure is worth a sacrifice
• Palliation– fundamental hope is comfort– consequences of any intervention
that relieves suffering are acceptable
How could we assess the patient needs?
• Holistic : Physical. Psychological. Spiritual. Social.
Physical Dimension • Performance status (ADL).
• Symptoms.
• Nutrition and hydration.
• Physical safety (falls).
psychological Dimension• Emotions .
• Cognition .
• Mood.
• Coping style.
• Fears.
• Dreams that shattered.
Spiritual Dimension• Meaning of life and the death
.• Religious.• Meaning of hope. • Multiple losses.
“The spiritual dimension cannot be ignored, for it is what makes us human.”Victor E. Frankl,
Man’s Search for Meaning. New York: Simon & Schuster, 1984:135.
Social Dimension
• Loneliness .• Economic (heavy expenses ) .• Caregivers and family burden.• Support network.• House and patient environment .• Community environment
(Culture, groups of support ).
The Interdisciplinary Team
• Physicians .• Nurses .• Social worker.• Physiotherapist .• Volunteers . • clinical psychologist .• secretary .• Clergyman.• Pharmacist
Barriers in palliative care
• Delays in the decision making .• if it's possible to discuss? (about
shifting goals of treatment).• Costs.• History and tradition (in
medicine).• Social and cultural issues.• Not enough services (palliative
care).
Barriers in palliative care• Indeed, costs spent on curative
efforts with minimal results would, if spent on palliative care, have a major positive impact on both patients and their families.
• Morphine restriction: morphine is not readily available across the country. Opioids prescription is still restricted to 3-10 days. It is recommended to be extended to a month.
Barriers in palliative care
• Trust between staff and family.
• Patient and family education (other caregivers).
• Education and training of palliative care for medical staff, particularly physicians and nurses is not available.
• Morphine consumption can be used as an approximate measure of the availability of pain control and hence availability of this form of palliative care.
• Developing countries consumed only 6% of global consumption of morphine. ( almost 80 percent of the world's population)
• While 10 countries together accounted for 87% of total world consumption of morphine.
International Observatory on End of Life Care
Morphine consumption as indicator of effective palliative service:
Average daily consumption of defined daily doses (for statistical purposes) of morphine per million inhabitants, 2000-2002
Source: International Narcotics Control Board Narcotic Drugs: Estimated World Requirements for 2004. Statistics for 2002. New York: United Nations, 2004.A limited range
Morphine Consumption
The Triangle shaped project for establishing Palliative Care Program which was developed by WHO.
Process measures (foundation): Cost little, but big effects Necessary before outcome
measures All three should be done namely:
Drug availability Changes in health care regulations /legislation to improve drug availability (especially opioids) Improvements in the area of prescribing, distributing, dispensing, and administration of drugs
Education Public Health care professionals (doctors, nurses, pharmacists) Others (healthcare policymakers / administrators, drug regulators
Governmental policyNational or state policy emphasizing the need to alleviate chronic pain through education, drug availability, and governmental support /endorsement The policy can stand alone, be part of an overall national/ state control program, be part of an overall policy on care of the terminally ill
WHY?
Do we need palliative care in Palestine?
Statistics
Cause of death 2003• Heart Diseases 20.1%• Carebrovascular diseases 11.1%• Perinatal conditions 9.7%• Cancer 9.0%• 5Accidents 8.9%• Hypertension 4.9%• Diabetes mellitus 4.1%• Renal failure 3.4%
Source: Ministry of Health
Statistics• Distribution of Mortality Rates by Age Group — Palestinian
Territories, West Bank, 1999-2003
Statistics
• Statistics revealed 5,542 new cancer cases in the WB, and 2,305 deaths
1999-2003, Palestinian National Cancer Registry
Statistics
Health Services for cancer patients:
• 75 beds in oncology departments in MOH hospitals.
• 2.7% of the total number in MOH hospitals beds.
• 60 beds in daily care departments.
Source: Palestinian Health Information Center (PHIC)
Ministry Of Health (MOH), 2007
Statistics
Health Services for cancer patients:
• Occupancy rate at 231.8% for day care.
• In developing countries, 80% of breast cancer cases are diagnosed on end stage
Source: Palestinian Health Information Center (PHIC)
Ministry Of Health (MOH), 2007
StatisticsTable: Palliation and palliative support available to Palestinians 2005
Adult and Paediatric* Services
Freestanding unit
Hospital unit
Hospital Support team
Home care
Day care
Drop-in /Advice Centre
Grand Total
Palestinian Authority funded oncology units: West Bank ~ Beit-Jala Hospital ~ Nablus Hospital
Gaza Strip~ European Gaza Hospital* ~ Shifa Hospital ~ Nasser Hospital*
1
1
1 1 1
1
1
1 1 1
Government/charitable funded provision: ~ Augusta Victoria Hospital oncology unit NGO:~ Patient’s Friends Society
1
1
1
1
6 1 7
Source: International Observatory on End of Life Care (IOELC)
Statistics
Palliative care in Palestine• Palliative care remains an undeveloped
and under resourced area of healthcare in the Palestinian Authority.
• lack of palliative care training and the lack of awareness of needs.
• There is a need for a national programme of palliative care and to have a dedicated society for hospice care.
IOELC Questionnaire: February 2004MECC conference, Larnaca, CyprusInterview with Dr. Salhab.
Statistics
Palliative care in Palestine• We are in need for:
– Palliative care medicine; legislations and prices.
– Multidisciplinary team for cancer care.– Hospice program
IOELC interview: Dr Fouad Sabatin – 2 May
2005
Needs Assessment Survey
AL-Sadeel SocietyBethlehem
Statistics
Need Assessment Survey for palliative care
Al-Sadeel Society questionnaire
September 2008
0
20
40
60
80
100
1
Presence of educational resources
Present
Not Present
Statistics
Need Assessment Survey for palliative care
Al-Sadeel Society questionnaire
September 2008
0
20
40
60
80
100
1
presence of educational pal. Care practice standards
Present
Not Present
Statistics
Need Assessment Survey for palliative care
Al-Sadeel Society questionnaire
September 2008
0
20
40
60
80
100
1
presence of training program
Present
Not Present
Statistics
Need Assessment Survey for palliative care
Al-Sadeel Society questionnaire
September 2008
0
20
40
60
80
100
1
presence of family participation in care
Present
Not Present
Statistics
Need Assessment Survey for palliative care
Al-Sadeel Society questionnaire
September 2008
0
20
40
60
80
100
1
presence of bereavment support groups
Present
Not Present
Statistics
Need Assessment Survey for palliative care
Al-Sadeel Society questionnaire
September 2008
0
20
40
60
80
1
presence of hospice/ home care services
Present
Not Present
RecommendationsWe need the government to ensure:• National policies and programs
for palliative care.• Palliative care programs are
incorporated in the existing health care systems.
• Health care workers are adequately trained in palliative care.
• Availability of both opioid and non-opioid analgesics, and annual estimation of stock.
Recommendations• drug legislations to include:
− regular review, with the aim of permitting importation, manufacture, prescribing, stocking, dispensing, and administration of opioids for medical purposes;
− legally empowering physicians, nurses and pharmacists to prescribe, stock, dispense, and administer opioids;
− review of the controls governing opioid use.
Recommendations
• Support is provided for programs of palliative care at all levels in the health care system and in the home
• The importance of home care for patients with advanced diseases and to ensure that hospitals are able to offer appropriate back-up and support for home care
• All must die someday. It is not an ‘if’ but a ‘when’, ‘where’ and ‘how’. If death is inevitable, we can only hope for a good death…or perhaps we can try to plan for one.
• Advance care planning may mean the difference between a good death and a bad death
We cure seldom
palliate often
and comfort always
(16th Century Anonymous)
