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
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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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
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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

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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

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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

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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

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CQI Process

PLAN
PCAD PATHWAY
DO
ACT
CHECK
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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

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PCAD Care Path Page 1
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PCAD Care Path Page 1
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PCAD Care Path Page 1
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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
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PCAD Daily Patient Care Flowsheet, P1
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PCAD Daily Patient Care Flowsheet, P2
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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

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PCAD MD Order Sheet Page 1
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PCAD MD Order Sheet Page 2
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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

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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

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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