Basic Principles In Palliative Care For Ca Pt

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)

sadeelsoc@yahoo.com