1. Principles of Palliative care Dr Ibrahim Bashaireh

2. Palliative derives from the Latin Pallium which means to cloak. Palliation means to cloak over, to not address the underlying causes, but to eliminate the effects.

3. History of Palliative Care 4 th Century Christians 1842 Jeanne Garnier Lyon France 1879 Irish Sisters of Charity Dublin 1905 St Joseph’s London 1967 St Christopher’s London Independent Sector Marie Curie Independent Hospices Macmillan Cancer Relief Public Sector NHS Hospices Palliative Care Beds % Funding for Hospices

4. Palliative care (WHO, 2003) “ Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.”

5. Definition of Palliative Care (contd) The goal of palliative care is achievement of the best possible quality of life for patients and their families Affirms life and regards dying as a normal process Provides relief from pain and other distressing symptoms Integrates the psychological and spiritual aspects of patient care Offers a support system to help patients live as actively as possible until death To help the family cope during the patients illness and in their own bereavement

6. First of all

7. Main aims Avoid the avoidable suffering Building Capacity : empowerment to adjust, relief and support the unavoidable suffering Wellbeing Promote comfort Improve the Quality of Life Comprehensiv e Care OMS 2002

8. Values Patient and relatives Respect their values IntegrityHonestyTrust Active, alive conception

9. Principles We are focused on the patient and his/her family We are Accessible We are Collaborative We provide high quality: We are Safe and Effective We are based on Evidence We have resources Ferris and Gómez- Batiste

10. 10 instruments for palliative care 1. Needs assessment. 2. Systematic therapeutic Plan. 3. Symptom control. 4. Emotional support. 5. Information and communication. 6. Clinical ethics as the method for decisions 7. Change in the micro organization: the team work 8. Change in the organization of resources. 9. Evaluation and monitoring results quality and results. 10. Education, training, and research And….. Advance Care Planning and Case management and continuity of care

11. Emotional Psychosocial Physical Spiritual Bereavement Symptom Control

12. General Palliative Care Patients with less complexed needs Nursing Homes, PC approach, Specialist Patients with complexed needs. Multi- professional team with specialist PC training. Medical, Nursing, Social Work, Spiritual, Physio, OT, Pharmacy Supportive Provided from pre-diagnosis onwards. Umbrella term for general & specialist services. Responsibility of all Health & Social care professionals

13. The Palliative Care Approach NCPC (1997) Vital and integral part of all clinical practice. Informed by a knowledge of and practice of palliative care principals and supported by specialist palliative care Quality of life A whole person approach Care for both the dying person and those that matter to the person Patient autonomy and choice

14. Principles underlying palliative care provision (NCPC 1997) It is the right of every person with a life threatening illness to receive appropriate palliative care wherever they are. It is the responsibility of every health care professional to practice the palliative care approach, and to call in specialist palliative care colleagues if the need arises, as an integral part of good clinical practice whatever the illness or stage.

15. What kind of issues would effect when or why people access palliative care services? Consider: Resources available Regional differences Education/information History

16. When ? DiagnosisDeath Active – Treatments Palliative Care Time

17. 56% wanted to die at home 25% of Cancer patients did 20% of people with other diseases did 11% wanted to die in hospital 47% of Cancer patients did 56% of people with other diseases did 24% wanted to die in a hospice. 17% of Cancer patients did 4% of people with other diseases did National Council for Palliative Care 2003

18. Frequency of common symptoms in advanced illness (Atkinson & Virdee, 2001) SymptomPatients with cancer Patients with progressive non- malignant disease Pain Breathlessness Vomiting or nausea Sleeplessness Confusion Depression Anorexia Constipation Pressure sores Loss of bladder control Loss of bowel control Unpleasant smell 84 47 51 33 38 71 47 28 37 25 19 67 49 27 36 38 36 38 32 14 33 22 32

19. Palliative Care Nursing

20. Palliative care nursing Doing for Preserving integrity empowering Finding meaning VALUING connecting

21. 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. Breaking the connection –usually as a result of the patient’s death

22. Empowering..... facilitating – –recognises patient autonomy encouraging defusing –dealing with negative feelings mending –- facilitating healing giving information

23. Palliative care nursing Doing for...... Taking charge –symptom control –making arrangements Team playing –acting as the patient’s advocate Finding meaning Focusing on living - helping the patient to live as fully as possible Acknowledging death –giving or reiterating bad news –talking about death and the time left

24. Preserving Integrity Confronting own mortality Burnout Supporting Colleagues

25. Hope Comfort Attachment Worth Hope Diminishing Hope Sustaining Physical distressPhysical Ease Abandonment & Isolation Caring relationships Feeling devaluedFeeling valued

26. Hope nurturing interventions in palliative care Comfort Assessment, psychosocial issues. Attachment Be there, caring environment, promote communication Worth Explore previous experience, future wishes,enhance independence

27. The tyrannies of palliative care (Aranda, 2001) Niceness Glowing testimonial Depressing/Sad Passive

28. Ethics Treatment Options Feeding/Fluids Sedation CPR Carers Euthanasia