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PALLIATIVE CARE: TRENDS AND TREATMENT PATHWAYS

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Title: 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
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 LifeSymptom Prevalence in
Cancer Patients
  • Symptom Prevalence ()
  • 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
  • Symptom Prevalence ()
  • 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
  • Symptom Prevalence ()
  • 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 gt50
  • 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 LifeReasons for Deficiencies
  • Deficiencies in professional training and focus
  • Deficiences in the system of care

27
Care at the End of LifeReasons 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 LifeReasons 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 ones own mortality

29
Care at the End of LifeReasons 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 (gt80 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
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
  • 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

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 patients 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 PATIENTS 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

51
PCAD Care Path
  • SPIRITUAL NEEDS
  • SPIRITUAL COMFORT ASSESSMENT
  • Spiritual supports
  • Spiritual needs and/or distress
  • SPIRITUAL SUPPORT Referral to Chaplain
  • Provide opportunity for expression of beliefs,
    fears, and hopes
  • Provide access to religious resources
  • Facilitate religious practices

52
PCAD Care Path
  • PATIENT/FAMILY EDUCATION
  • ASSESS NEEDS AND PROVIDE EDUCATION REGARDING
  • Goals of Palliative Care for Advanced Disease
  • Physical and psychosocial needs during the dying
    process
  • Coping techniques/Relaxation techniques
  • Bereavement process and resources

53
PCAD Care Path
  • DISCHARGE PLANNING
  • FOR DISCHARGE TO COMMUNITY Referral to Pain
    Medicine Palliative Care/Hospice/Home
    Care/Social Work as needed.
  • FOR DEATH
  • Post mortem care observing cultural and religious
    practices and preferences
  • Provide for care of patients possessions as per
    family wishes
  • Bereavement support for family and staff

54
PCAD Care Path Page 1
55
PCAD Care Path Page 1
56
PCAD Care Path Page 1
57
Patient Daily Care Flowsheet
  • Notes advanced directive decisions daily
  • Assesses comfort level using scale of 1 - 5
  • Assesses pain q 4 hours and within 1 hour of
    intervention
  • Assesses Eyes, Lips, Mouth, Breathing, Nutrition,
    IV lines, Mobility, Elimination, Skin/Wound,
    Sleep, Psychosocial, and Family Status
  • Assessment and Intervention indicated by initial
    (check) q shift

58
PCAD Daily Patient Care Flowsheet, P1
59
PCAD Daily Patient Care Flowsheet, P1
60
PCAD Daily Patient Care Flowsheet, P2
61
PCAD Doctors Order Sheet
  • PCAD ordered by attending physician
  • Previous medications, routine labs and tests
    should be reviewed and rewritten when PCAD
    ordered
  • Suggestions for medications but no required orders

62
PCAD MD Order Sheet Page 1
63
PCAD MD Order Sheet Page 2
64
PCAD Palliative Care for Advanced Disease
  • Implemented on 3 units
  • 4 Karpas (Pain and Palliative Care)
  • 9 Dazian (Oncology)
  • 7 Linsky (Geriatrics)
  • 3 other units used for comparison

65
Implementing PCAD
66
PCAD Palliative Care for Advanced Disease
  • Unit staff did daily/weekly review and
    considered the following question
  • Who would you not be surprised to have die
    during this hospitalization
  • PCAD candidates discussed with attending
    physician or designee PCAD activation required
    attending order

67
PCAD Palliative Care for Advanced Disease
  • PCAD units received in-servicing for nurses and
    had access to a specialist nurse on an ongoing
    basis
  • Each PCAD unit had an identified local champion

68
Educational Strategies for PCAD Units
  • Determine who will do the education
  • Use a 4 phase approach
  • Introduction to the clinical pathway
  • Inservice on the clinical pathway using case
    history and actual documents
  • Reference Manual on each unit
  • PCAD Liaison routinely on unit 1 - 2 times/week

69
Chart Audit Tool
  • Based on Fins Chart Audit Tool
  • Pre and Post audits on pilot and control units
  • Focus on
  • Advanced Directives
  • Treatments and procedures
  • Referrals and consults
  • Pain and symptoms
  • Discharge planning or Bereavement

70
Process Audit Tool
  • Documented/Verbal Process
  • Referral to PCAD
  • Clarification of goals with patient/family
  • Pain and symptoms
  • Utilization of documents
  • Problems/Issues in implementation of PCAD
  • Staff difficulties with end of life care

71
Staff Knowledge
  • Ross Palliative Care Survey (1996)
  • Nursing Assistant Pain Management Survey
  • All unit and house staff surveyed prior to
    education about PCAD
  • All staff surveyed post 6 months implementation
    of PCAD

72
Family Satisfaction Survey
  • Planned Afterdeath Interview
  • Advanced Directives
  • Preferred Place of Death
  • Discussion of Goals of Care
  • Last Week of Life
  • Not implemented due to concerns about instrument

73
PCAD Institutional Barriers
  • EOL awareness/discomfort/readiness
  • Communication deficits
  • Unit Resistance
  • Knowledge deficit
  • Methodology/Documentation

74
PCAD First Six Months
75
PCAD Preliminary Findings from Chart Review
  • Pre-PCAD Symptom assessment and use of
    consultations greater on Palliative Care Unit
    than other PCAD units or comparison units
  • Pre to Post assessment of symptoms improved on
    PCAD units and comparison units
  • Some items improved more on PCAD units, but no
    statistical significance

76
PCAD Preliminary Findings from Staff Assessments
  • Significantly increased nurse knowledge on
    Palliative Care Quiz

77
PCAD Practical Outcomes After Six Months
  • All three PCAD units have opted to continue using
    PCAD after funding ends
  • On the Pain and Palliative Care unit, PCAD viewed
    as tool to improve documentation
  • On the Oncology Unit, PCAD viewed as direct means
    to increased interdisciplinary discussion about
    goals of care, increased staff comfort, identify
    education needs

78
PCAD Practical Outcomes After Six Months
  • On the Oncology Unit, hospice referrals and DPMPC
    referrals have risen above historical levels

79
Insights and Lessons
  • Culture change requires shift in systems, access
    to experts, and local champions
  • PCAD can be an avenue to culture change, even if
    used sparingly

80
Insights and Lessons
  • PCAD can be improved by
  • More integration of formal CQI methods focused on
    symptoms or other concerns
  • More culture-friendly criteria for use (e.g.,
    comfort care)
  • More flexibility in the involvement of physicians
    and unit staff
  • More testing
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