PALLIATIVE CARE: TRENDS AND TREATMENT PATHWAYS

1. PALLIATIVE CARE: TRENDS AND TREATMENT PATHWAYS • Definition and Models • Challenge of end-of-life care • The promise of pathways

2. Palliative Care: Definition “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment.” World Health Organization, 1990

3. Palliative Care: A Therapeutic Model “Palliative care is an interdisciplinary therapeutic model targeted to the care of patients with all types of chronic, progressive illness. Palliative care focuses on maintaining a satisfactory quality of life throughout the course of the disease and…

4. Palliative Care: A Therapeutic Model “…intensifies as death approaches to ensure the patient and family that comfort will be a priority, values and decisions will be respected, psychosocial and spiritual needs will be addressed, practical help will be available, and opportunities for closure and growth will be enhanced.”

5. Palliative Care: A Therapeutic Model “Palliative care should be integrated with disease-modifying therapy as part of routine care and be available as a specialized program for those with intense needs.”

6. Palliative Care Is Excellent Routine Medical Care • Implies obligations on the part of all involved health care professionals • Multidimensional assessment • Excellence in communication • Comprehensive care • Requires a skill set and a system that supports this type of care

7. Palliative Care: The Need for Specialized Care • To optimize palliative care • Integration into best routine medical practice • Access to specialized care • Management of complex symptom control problems • Comprehensive care for multiple needs • Comprehensive care of the imminently dying

8. Palliative Care: The Need for Specialized Care • Access to specialized care: other benefits • Education and training • Role modeling • Direct teaching • Formulation and testing of conceptual models

9. Palliative Care: The Need for Specialized Care • Access to specialized care: other benefits • Enhancing health care systems • Program development and testing • Quality improvement programs • Development of clinical pathways • Clinical research

10. Palliative Care: A Specialty • What is specialist level care? • Involvement of professionals and volunteers with high level of knowledge and skills, who • Function as a team • Consider the family as the unit of care • Direct a care plan that integrates resources at home, management of the primary medical team, and specific palliative care interventions

11. Community resources Dietician Occupational Therapist Volunteers Physician Social Worker PATIENT family Chaplain Nurses Administration Physiotherapist Othertherapies Pharmacist Otherhealthcareprofessionals Ajemian, Oxford Textbook of Palliative Medicine, 1993 The Palliative Care Team

12. Palliative Care: A Specialty • What is specialist level care? • Focus on the care of patients with advanced disease and perceived short prognosis, often the imminently dying

13. Palliative Care: Targets for Care • Addresses needs in the multiple domains inherent in quality of life • Physical: Symptoms, progressive impairments • Psychological: Symptoms, psychiatric disorders, mood and worries, adaptation and coping, body image, sexuality

14. Palliative Care: Targets for Care • Addresses needs in the multiple domains inherent in quality of life • Social: Role functioning, family integration, intimacy • Spiritual: Religion and faith, meaning, values, need to contribute, transcendence • Others: Economic

15. Palliative Care: Targets for Care • Addresses needs that may become most prominent as death approaches • Death preparation • Assurance of comfort • Support for autonomy, decision making consistent with values, and preparation for surrogate decisions • Intensifying family support

16. Care at the End of Life:Symptom Prevalence in Cancer Patients SymptomPrevalence (%) • Lack of energy 74.2 • Worrying 70.9 • Feeling sad 66.1 • Pain 62.7 • Feeling Nervous 61.9 • Drowsiness 61.0 • Dry Mouth 56.5 • Sleep Difficulty 53.7 Portenoy et al, 1994

17. Care at the End of Life: Symptom Prevalence in AIDS SymptomPrevalence (%) • Worrying 85.5 • No energy 85.1 • Sadness 81.5 • Pain 75.6 • Irritability 75.1 • Sleep Difficulty 73.8 • Vogl, Rosenfeld, Breitbart, Thaler et al, 1999

18. Symptoms in 200 Patients During the last 48 Hours of Life SymptomPrevalence (%) • Noisy, moist breathing 56 • Urinary dysfunction 53 • Pain 51 • Agitation 42 • Dyspnea 22 Lichter and Hunt, 1990

19. Psychological Distress in Patients with Advanced Disease • Prevalence rates for anxiety, depressed mood, worry >50% • Depression in approximately one-third

20. Caregiver Burden • 20% of family members quit work to provide care • Financial devastation • 30-40% of Americans report loss of most family savings while caring for a dying relative

21. Place of Death: Desire vs. Reality • 90% of respondents to US survey desire death at home • Death in US institutions • 1949 – 50% of deaths • 1958 – 60% • 1980 to present – 75% • 57% hospitals, 17% nursing homes, 20% home, 6% other

22. Status of Palliative Care in the US: SUPPORT Study • SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments • Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during admission to 5 US teaching hospitals

23. SUPPORT: Phase I Findings • 46% of DNR orders were written within 2 days of death • 47% of physicians knew when their patients wanted to avoid CPR • 38% of patients spent 10+ days in ICU • 50% of dying patients suffered severe pain • High hospital resource use

24. SUPPORT: Phase II Findings • Compared to control patients, those patients whose preferences and prognoses were communicated experienced no change in: • incidence and timing of written DNR orders • Patient-MD agreement on CPR preferences • Days in ICU, comatose or on ventilator • Pain • Hospital resource use

25. SUPPORT Study: Conclusions • Substantial shortcomings in care for seriously ill • Improving doctor-patient communication through intermediary is inadequate to change practice

26. Care at the End of Life:Reasons for Deficiencies • Deficiencies in professional training and focus • Deficiences in the system of care

27. Care at the End of Life:Reasons for Deficiencies • Problems with the professional • Lack of physician training in symptom control, communication skills, ethics, use of technology in end of life care

28. Care at the End of Life:Reasons for Deficiencies • Death as medical failure • No medical role in dying • Palliative care skills undervalued • Role of the physician ends when care shifts from curative to palliative • Always more biotechnology • Anxiety about one’s own mortality

29. Care at the End of Life:Reasons for Deficiencies • Problems with the system • No systems (policies and procedures) established to support excellence in palliative care as part of routine inpatient management • No access to specialized programs in palliative care

30. Addressing the Deficiencies: Models for Specialized Programs • Models for home care • US version of hospice • specialized nursing programs • extensions of hospital-based palliative care services • Hospital-based palliative care programs

31. Department of Pain Medicineand Palliative Care • Inaugurated in 1997 • First program jointly devoted to pain and palliative care • A certified hospice program, the Jacob Perlow Hospice, within the palliative care division

32. Department of Pain Medicineand Palliative Care Clinical Programs • Inpatient consultation team • 10-15 consults per week, 80% palliative care • Ambulatory practice • 550 visits (100 new patients) per month, 80% pain

33. Department of Pain Medicineand Palliative Care Clinical Programs • Inpatient unit • 14 beds, 80% palliative care/hospice occupancy • Jacob Perlow Hospice • 105 patient daily census (>80% home care)

34. Department of Pain Medicineand Palliative Care

35. Department of Pain Medicineand Palliative Care Institute for Education and Research in Pain and Palliative Care • Source of programs to improve routine practice • Conferences, professional training, website • Special projects

36. Principal Investigators Marilyn Bookbinder, PhD Russell K. Portenoy, MD Co-Investigators Arthur Blank, PhD Cheryl Avellanet, RN, MPH Rose Anne Indelicato, RN, NP Myra Glajchen, DSW Pauline Lesage, MD Elizabeth Arney, RN, BSN Peter Homel, PhD Special Project: Establishing Benchmarks for the Care of the Imminently Dying InpatientNew York State Quality Measurement Grant Beth Israel Medical Center, New York City, 1999-2000

37. Palliative Care for Advanced Disease (PCAD) • A guideline for the interdisciplinary management of imminently dying patients • Offers instruments to track process and outcome data related to institutional EOL care

38. PCAD: Key Elements • Respect patient autonomy, values, and decisions • Continually clarify goals of care • Minimize symptom distress at EOL • Optimize the delivery of appropriate supportive interventions and consultation • Reduce unnecessary interventions

39. PCAD: Key Elements • Support families by coordinating services • Provide bereavement services for families and staff • Facilitate the transition to alternative care settings, such as hospice, when appropriate

40. PCAD as CQI Process • Find a process to improve • Organize a team that knows the process • Clarify current knowledge about the process • Understand causes of process • Select the process

41. CQI Process PLAN PCAD PATHWAY DO ACT CHECK

42. PCAD Team • Pain Medicine and Palliative Care: Nurses, Physicians, Social Workers, Psychologists, Hospice Team • Patient Care Services (Nursing) • Quality Improvement and Tools Experts • Evaluation and Research • Ethics • Chaplain • Pharmacy • Social Work • Leadership Teams and staff of pilot units (Oncology, Geriatrics, Hospice)

43. PCAD Guidelines • Consists of three components • PCAD Care Path - the interdisciplinary plan of care • PCAD MD Order Sheet - a documentation tool and suggestions for medical management • PCAD Daily Patient Care Flowsheet - a documentation tool for daily assessments and interventions

44. PCAD Evaluation • Tools • Chart Audit Tool (Outcome Measure) • Process Audit (Process Measure) • Palliative Care Survey (Knowledge Measure) • Afterdeath Interview (Family Satisfaction Measure) • Focus Groups • Qualitative Comments

45. PCAD Care Path • Treatment/Interventions/Assessments • Pain Management • Tests/Procedures • Medications • Fluids/Nutrition • Activity

46. PCAD Care Path • Consults • Psychosocial Needs • Spiritual Needs • Patient/Family Education • Discharge Planning

47. PCAD Care Path • PAIN MANAGEMENT • ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. • Complete pain assessment scale. • Anticipate pain needs. • TESTS/PROCEDURES • Usually unnecessary for patient/family comfort (All lab work and diagnostic work is discouraged) • MEDICATIONS • Medication regimen focus is the relief of distressing symptoms.

48. PCAD Care Path • FLUIDS/NUTRITION • DIET: Selective diet with no restrictions • Nutrition to be guided by patient’s choice of time, place, quantities and type of food desired. Family may provide food. • Educate family in nutritional needs of dying patient • IVs for symptom management only • TRANSFUSIONS for symptom relief only • Intake and Output – consider goals of care relative to patient comfort • Weights – consider risks/benefits relative to patient comfort

49. PCAD Care Path • ACTIVITY: • ACTIVITY DETERMINED BY PATIENT’S PREFERENCES AND ABILITY. • Patient determines participation in ADLs, i.e.,turning and positioning, bathing, transfers • CONSULTS: • Initiate referrals to institutional specialists to optimize comfort and enhance Quality of Life (QOL) only.

50. PCAD Care Path • PSYCHOSOCIAL NEEDS • PSYCHOSOCIAL COMFORT ASSESSMENT of: • Patient • Primary caregiver • Grieving process of patient & family • PSYCHOSOCIAL SUPPORT: Referral to Social Work • Offer emotional support • Support verbalization and anticipatory grieving • Encourage family caring activities as appropriate/individualized to family situation and culture • Facilitate verbal and tactile communication • Assist family with nutrition, transportation, child care, financial, funeral issues • Assess bereavement needs