1. Basic PrinciplesinPalliative Care Amal Dweib Khleif RN, BSN, ON, Palliative Care Nurse Al-Sadeel Society Palliative Care for Cancer Patients

2. 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.

3. FACTS All of us well die. Death does not meaning staff failure. We spend our resources to prolong life.

4. Are we meeting our patients and their families wishes when they enter end of life pathway ?

6. inappropriate pain control.

7. Load of symptoms in the end of life .

8. Majority of diagnosed patient are in late stage .

9. 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.

10. Symptoms at the End of Life: Cancer vs. Other Causes of Death Cancer Others 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

11. 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.

12. Is really quality of life important? The incidence of death at hospital near 80%

13. Restoring the Balance Palliative Care Life Prolonging Care

14. 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.

15. 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)

16. Palliative care Treatment 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)

17. 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;

18. 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.

19. 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,

20. OLD MODEL OF CARE ABRUPT TRANSITION TO HOSPICE D I A G N O S I S CURATIVE PALLIATIVE DD DEATH RELIEF OF SUFFERING PROLONGATION OF LIFE

21. MODERN MODEL OF CARE

22. Most Recent MODEL OF CARE Continuumof Care Curative Treatment (Cancer, CHF, COPD, AIDS, Dementia debilitating Neurological diseases …) Bereavement Care Hospice Palliative Treatment Diagnosis Death

23. 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

24. How could we assess the patient needs? Holistic : Physical. Psychological. Spiritual. Social.

25. Physical Dimension Performance status (ADL). Symptoms. Nutrition and hydration. Physical safety (falls).

26. psychological Dimension Emotions . Cognition . Mood. Coping style. Fears. Dreams that shattered.

27. 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.

28. Social Dimension Loneliness . Economic (heavy expenses ) . Caregivers and family burden. Support network. House and patient environment . Community environment (Culture, groups of support ).

29. The Interdisciplinary Team Physicians. Nurses . Social worker. Physiotherapist . Volunteers . clinical psychologist . secretary . Clergyman. Pharmacist

30. 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).

31. 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.

32. 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.

33. 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:

34. 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

35. 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 policy National 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

36. WHY? Do we need palliative care in Palestine? ?

37. 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

38. Statistics Distribution of Mortality Rates by Age Group — Palestinian Territories, West Bank, 1999-2003

39. Statistics Statistics revealed 5,542 new cancer cases in the WB, and 2,305 deaths 1999-2003, Palestinian National Cancer Registry

40. 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

41. 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

42. Statistics Table: Palliation and palliative support available to Palestinians 2005 Source: International Observatory on End of Life Care (IOELC)

43. 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 2004 MECC conference, Larnaca, Cyprus Interview with Dr. Salhab.

44. 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

45. Needs Assessment Survey AL-Sadeel Society Bethlehem

46. Statistics Need Assessment Survey for palliative care Al-Sadeel Society questionnaire September 2008

47. Statistics Need Assessment Survey for palliative care Al-Sadeel Society questionnaire September 2008

48. Statistics Need Assessment Survey for palliative care Al-Sadeel Society questionnaire September 2008

49. Statistics Need Assessment Survey for palliative care Al-Sadeel Society questionnaire September 2008

50. Statistics Need Assessment Survey for palliative care Al-Sadeel Society questionnaire September 2008

51. Statistics Need Assessment Survey for palliative care Al-Sadeel Society questionnaire September 2008

52. Recommendations We 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.

54. legally empowering physicians, nurses and pharmacists to prescribe, stock, dispense, and administer opioids;

56. 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 abad death

57. We cure seldom palliate often and comfort always (16th Century Anonymous)

58. THANK YOU sadeelsoc@yahoo.com