Principles and goals of hospice and palliative care

1. Principles and goals of hospice and palliative care

2. Death Statistics - Worldwide World Health Organization, 2008 2

3. Hospitals Clinics Streets (homeless) Genocide Home Nursing homes Battlefields Mass casualty (pandemics, earth-quakes, tsunami) Where is Palliative Care Needed? 3

4. Differences in Cause of Death • What are differences in your country or community? 4

5. Illness/Dying TrajectoriesSudden Death, Unexpected Cause Health Status Death Time Field & Cassel, 1997 5

6. Illness/Dying TrajectoriesSteady Decline, Short Terminal Phase Health Status Death Time Field & Cassel, 1997 6

7. Illness/Dying TrajectoriesSlow Decline, Periodic Crises, Death Decline Health Status Crises Death Time Field & Cassel, 1997 7

8. Illness/Dying Trajectories Lingering, Expected Death Frailty Health Status Death Time Lunney et al., 2003 8

9. Barriers to Quality Care at the End of Life • Failure to acknowledge the limits of medicine • Lack of training for healthcare providers • Hospice/palliative care services are poorly understood • Rules and regulations • Lack of access to opioids • Denial of death Glare et al., 2003 9

10. What is Hospice? • Definition • History • What hospice care is available in your country? 10

11. Definition History What forms of palliative care are available in you country? What is Palliative Care? 11

12. Hospice may include: • Interdisciplinary care • Medical appliances and supplies • Drugs for symptom and pain relief • Short-term inpatient and respite care • Counseling • Spiritual care • Volunteer services • Bereavement services What does hospice provide in your country? 12

13. Current Practice of Hospice and Palliative Care Curative Treatment Palliative Care Hospice 13

14. Continuum of care Death Disease-Modifying Treatment Hospice Care Bereavement Support Palliative Care Terminal Phase of Illness NCP, 2009 14

15. Let’s Practice: A Case Study • 21 year-old male with sickle cell disease • Had a stroke a few years ago • Frequent exacerbations of pain over the past 6 months (8 hospitalizations) 15

16. Quality of Life Model Physical Well-Being Psychological Well-Being Social Well-Being Spiritual Well-Being Ferrell et al., 1991 16

17. Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence Adapted from Ferrell et al., 1991 17

18. Maintaining Hope in the Midst of Death • Experiential processes • Spiritual processes • Relational processes • Rational thought processes Ersek & Cotter, 2010 18

19. Tools and Resources for Palliative Care Assessment Tools • Physical symptoms • Emotional symptoms • Spirituality • Quality of life • Caregivers outcomes http://prc.coh.org 19

20. Prognostication • Performance status Karnofsky – ECOG poor predictors • Multiple symptoms • Biological markers (e.g. albumin) • “Would I be surprised if this patient died in the next 6 months?” Lynn et al., 2000 20

21. Role in Improving Palliative Care • Some things cannot be “fixed” • Use of therapeutic presence • Maintaining a realistic perspective 21

22. Extending Palliative Care Across Settings • Early identification of services • Expanding the concept of healing • Becoming educated 22

23. Final Thoughts….. • Quality palliative care addresses quality-of-life concerns • Increased knowledge is essential • “Being with” • Importance of interdisciplinary approach to care 23

24. 24 To Comfort Always

25. ROLE OF A NURSE IN PALLIATIVE CARE

26. FLORENCE THE FIRST PALLIATIVE CARE NURSE Florence Nightingale herself stated: ‘I use the word nursing for want of a better.’ She went on to say: ‘The very elements of nursing are all but unknown’ (Nightingale, 1860).

27. DEFINING PALLIATIVE CARE ‘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, psychosocial and spiritual.’ WHO

28. PALLIATIVE CARE

30. PALLIATIVE CARE GOAL Its goal is much more than comfort in dying; palliative care is about living, through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status

31. PALLIATIVE CARE SETTINGS anywhere

32. VIRGINIAS DEFINITION OF NURSING The most succinct and relevant to palliative care is Virginia's definition of nursing; ‘Nursing is primarily assisting the individual in the performance of those activities contributing to health and its recovery, or to a peaceful death.’

33. PALLIATIVE CARE COMPETENCIES • Communication skills • Physical care skills • Psychosocial skills • Teamwork skills • Intrapersonal skills • Life closure skills (BECKER 2009)

34. COMMUNICATION SKILLS 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.

35. TEAM WORK SKILLS The growth of the nursing role within these teams has been dramatic and continues to represent a much-admired model of working (Cox and James, 2004).

36. PHYSICAL CARE SKILLS • the knowledge and skills necessary to deliver active, hands-on care in whatever setting throughout a long period of illness. • observational skills and the intuitive ability to recognize signs • advising doctors of the appropriate prescription and dosage to manage pain • the advocacy role nurses have towards patients at a time of extreme vulnerability.

37. An ability to work with families, anticipating their needs, putting them in touch with services and supporting them when appropriate PSYCHOSOCIAL SKILLS

38. INTRAPERSONAL SKILLS Nurses need to recognize and attempt to understand personal reactions that occur as a natural consequence of working with dying and bereaved people, and to be able to reflect on how this affects care given in sensitive situations. It is the most challenging of all competency areas and plays a significant part in the professional growth of those who choose to work in this field (Becker and Gamlin)

39. LIFE CLOSURE SKILLS • This area is concerned with nursing behaviours and skills that are crucial to patients’ and families’ dignity, as they perceive it, when life is close to an end and thereafter. • Such care has been described as sacred work, in which the nurse enters into the patient’s intimate space and touches parts of the body that are usually private

40. N U R S E S R O L E P A L L I A T I V E FACILITATOR CASEMANAGER ADVOCATE ASSESSMENT AND MANAGEMENT EXPERT

41. PALLIATIVE CARE PLAN Palliative care plan includes -care goals -symptom management -advance care planning -financial planning -family support -spiritual care -functional status support and rehabilitation -co morbid disease management

42. MULTIDIMENSIONALITYOF SUFFERINGS PHYSICAL SUFFERING PSYCHOSOCIAL EMOTIONAL SPIRITUAL

43. Fatigue Pain Nausea Vomiting Insomnia Dyspnea pyrexia Anorexia; cachexia Impaired mental status Dry mouth Constipation Diarrhoea Fever COMMON SYMPTOMS

44. MANAGING PAIN • Assess the multi dimensions of pain & determine the type of pain • Employ a assessment scale • Use WHO ladder • Administer around the clock doses and break through doses • Seek the help of appropriate alternative therapies • Continue evaluating pain control and pain status

45. DYSPNEA • Address the anxiety with assurance and relaxation techniques • Maintain saturation above 90% with supplemental oxygen • Suctioning is generally not indicated • Administer 5-10mg of morphine q4h if the patient is not on opioids

46. HANDLING ANXIETY Types include situational anxiety, drug related anxiety. organic anxiety and psychological anxiety -multidisciplinary assessment -treat the reversible causes -non pharmacological therapy -spiritual support -short term psychotherapy -tranquilizers for severe anxiety

47. NOURISHING AND HYDRATING • Suggest small meals and liquid supplements • Treat the symptom that may cause decreased appetite • Administer appetite stimulants • Employ infusions and hypodermoclysis

49. FUNCTIONAL STATUS SUPPORT • Assess ability to perform ADL & IADL • Find and rule out underlying reversible causes of functional impairment • Refer to rehabilitation evaluation and conditioning exercises as appropriate • Optimize and maintain functional status with physical, occupational and complementary therapies

50. PALLIATIVE SEDATION Intermittent sedation for relief of intractable symptoms when they are not controlled even with aggressive measures. - it is different from assisted death as it is not intended for death yet often foreseen - sedative dose is not a killing dose