palliative care: trends and treatment pathways n definition and models n challenge of end-of-life...

PALLIATIVE CARE: PALLIATIVE CARE: TRENDS AND TRENDS AND

TREATMENT PATHWAYSTREATMENT PATHWAYS

PALLIATIVE CARE: PALLIATIVE CARE: TRENDS AND TRENDS AND

TREATMENT PATHWAYSTREATMENT PATHWAYS

Definition and ModelsDefinition and Models Challenge of end-of-life careChallenge of end-of-life care The promise of pathwaysThe promise of pathways

Palliative Care: Palliative Care: DefinitionDefinitionPalliative Care: Palliative Care: DefinitionDefinition

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

World Health Organization, 1990World Health Organization, 1990

Palliative Care: Palliative Care: A Therapeutic ModelA Therapeutic Model


“ “Palliative care is an interdisciplinary therapeutic Palliative care is an interdisciplinary therapeutic model targeted to the care of patients with all types model targeted to the care of patients with all types of chronic, progressive illness. of chronic, progressive illness.

Palliative care focuses on maintaining a satisfactory Palliative care focuses on maintaining a satisfactory quality of life throughout the course of the disease quality of life throughout the course of the disease

and… and…



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



“ “Palliative care should be integrated with Palliative care should be integrated with disease-modifying therapy as part of routine disease-modifying therapy as part of routine carecare

and and

be available as a specialized program for be available as a specialized program for those with intense needs.” those with intense needs.”

Palliative Care Is Excellent Palliative Care Is Excellent Routine Medical CareRoutine Medical Care

Palliative Care Is Excellent Palliative Care Is Excellent Routine Medical CareRoutine Medical Care

Implies obligations on the part of all Implies obligations on the part of all involved health care professionalsinvolved health care professionals– Multidimensional assessmentMultidimensional assessment– Excellence in communication Excellence in communication – Comprehensive careComprehensive care

Requires a skill set and a system that Requires a skill set and a system that supports this type of caresupports this type of care

Palliative Care: The Need for Palliative Care: The Need for Specialized CareSpecialized Care


To optimize palliative careTo optimize palliative care– Integration into best routine medical practiceIntegration into best routine medical practice

– Access to specialized careAccess to specialized care» Management of complex Management of complex symptom control symptom control

problemsproblems

Comprehensive care for multiple needsComprehensive care for multiple needs

Comprehensive care of the imminently dyingComprehensive care of the imminently dying



Access to specialized care: other benefitsAccess to specialized care: other benefits– Education and trainingEducation and training

Role modelingRole modeling Direct teachingDirect teaching Formulation and testing of conceptual modelsFormulation and testing of conceptual models



Access to specialized care: other benefitsAccess to specialized care: other benefits– Enhancing health care systemsEnhancing health care systems

Program development and testingProgram development and testing Quality improvement programsQuality improvement programs Development of clinical pathwaysDevelopment of clinical pathways Clinical researchClinical research

Palliative Care: Palliative Care: A SpecialtyA SpecialtyPalliative Care: Palliative Care: A SpecialtyA Specialty

What is specialist level care?What is specialist level care?– Involvement of professionals and volunteers Involvement of professionals and volunteers

with high level of knowledge and skills, who with high level of knowledge and skills, who » Function as a team Function as a team

» Consider the family as the unit of careConsider the family as the unit of care

» Direct a care plan that integrates resources at Direct a care plan that integrates resources at home, management of the primary medical team, home, management of the primary medical team, and specific palliative care interventionsand specific palliative care interventions

The Palliative Care TeamThe Palliative Care TeamThe Palliative Care TeamThe Palliative Care Team

PATIENTfamily

Nurses

SocialWorker Chaplain

Dietician

Other health care professionals

Administration

Volunteers Occupational Therapist

Other therapies

Physiotherapist

Pharmacist

Physician

Community resources

Ajemian, Oxford Textbook of Palliative Medicine, 1993

Palliative Care: Palliative Care: A SpecialtyA SpecialtyPalliative Care: Palliative Care: A SpecialtyA Specialty

What is specialist level care?What is specialist level care?– Focus on the care of patients with advanced Focus on the care of patients with advanced

disease and perceived short prognosis, often the disease and perceived short prognosis, often the imminently dyingimminently dying

Palliative Care: Palliative Care: Targets for CareTargets for Care

Palliative Care: Palliative Care: Targets for CareTargets for Care

Addresses needs in the multiple Addresses needs in the multiple domains inherent in quality of lifedomains inherent in quality of life– Physical: Symptoms, progressive Physical: Symptoms, progressive

impairmentsimpairments– Psychological: Symptoms, psychiatric Psychological: Symptoms, psychiatric

disorders, mood and worries, adaptation disorders, mood and worries, adaptation and coping, body image, sexualityand coping, body image, sexuality

Palliative Care: Palliative Care: Targets for Care Targets for Care

Palliative Care: Palliative Care: Targets for Care Targets for Care

Addresses needs in the multiple domains Addresses needs in the multiple domains inherent in quality of lifeinherent in quality of life– Social: Role functioning, family integration, Social: Role functioning, family integration,

intimacy intimacy – Spiritual: Religion and faith, meaning, Spiritual: Religion and faith, meaning,

values, need to contribute, transcendencevalues, need to contribute, transcendence– Others: EconomicOthers: Economic

Palliative Care: Palliative Care: Targets for CareTargets for Care Palliative Care: Palliative Care: Targets for CareTargets for Care

Addresses needs that may become most Addresses needs that may become most prominent as death approachesprominent as death approaches– Death preparationDeath preparation– Assurance of comfortAssurance of comfort– Support for autonomy, decision making Support for autonomy, decision making

consistent with values, and preparation for consistent with values, and preparation for surrogate decisionssurrogate decisions

– Intensifying family supportIntensifying family support

Care at the End of Life:Care at the End of Life:Symptom Prevalence in Cancer PatientsSymptom Prevalence in Cancer Patients

Care at the End of Life:Care at the End of Life:Symptom Prevalence in Cancer PatientsSymptom Prevalence in Cancer Patients

SymptomSymptom Prevalence (%)Prevalence (%) Lack of energy 74.2Lack of energy 74.2 WorryingWorrying 70.9 70.9 Feeling sadFeeling sad 66.1 66.1 PainPain 62.7 62.7 Feeling NervousFeeling Nervous 61.9 61.9 DrowsinessDrowsiness 61.0 61.0 Dry MouthDry Mouth 56.5 56.5 Sleep DifficultySleep Difficulty 53.7 53.7

Portenoy et al, 1994Portenoy et al, 1994

Care at the End of Life: Care at the End of Life: Symptom Prevalence in AIDSSymptom Prevalence in AIDSCare at the End of Life: Care at the End of Life: Symptom Prevalence in AIDSSymptom Prevalence in AIDS

SymptomSymptom Prevalence (%)Prevalence (%) WorryingWorrying 85.585.5 No energyNo energy 85.185.1 SadnessSadness 81.581.5 PainPain 75.675.6 IrritabilityIrritability 75.175.1 Sleep DifficultySleep Difficulty 73.873.8

– Vogl, Rosenfeld, Breitbart, Thaler et al, 1999Vogl, Rosenfeld, Breitbart, Thaler et al, 1999

Symptoms in 200 Patients Symptoms in 200 Patients During the last 48 Hours of LifeDuring the last 48 Hours of Life

Symptoms in 200 Patients Symptoms in 200 Patients During the last 48 Hours of LifeDuring the last 48 Hours of Life

SymptomSymptom Prevalence (%)Prevalence (%) Noisy, moist breathingNoisy, moist breathing 56 56 Urinary dysfunction Urinary dysfunction 53 53 PainPain 51 51 AgitationAgitation 42 42 DyspneaDyspnea 22 22

Lichter and Hunt, 1990Lichter and Hunt, 1990

Psychological Distress in Psychological Distress in Patients with Advanced DiseasePatients with Advanced Disease

Psychological Distress in Psychological Distress in Patients with Advanced DiseasePatients with Advanced Disease

Prevalence rates for anxiety, Prevalence rates for anxiety, depressed mood, worry >50%depressed mood, worry >50%

Depression in approximately one-thirdDepression in approximately one-third

Caregiver Burden Caregiver Burden Caregiver Burden Caregiver Burden

20% of family members quit work to 20% of family members quit work to provide careprovide care

Financial devastationFinancial devastation– 30-40% of Americans report loss of most 30-40% of Americans report loss of most

family savings while caring for a dying family savings while caring for a dying relativerelative

Place of Death: Place of Death: Desire vs. RealityDesire vs. RealityPlace of Death: Place of Death:

Desire vs. RealityDesire vs. Reality 90% of respondents to US survey 90% of respondents to US survey

desire death at homedesire death at home Death in US institutionsDeath in US institutions

– 1949 – 50% of deaths1949 – 50% of deaths– 1958 – 60%1958 – 60%– 1980 to present – 75% 1980 to present – 75%

57% hospitals, 17% nursing homes, 57% hospitals, 17% nursing homes, 20% home, 6% other 20% home, 6% other

Status of Palliative Care in Status of Palliative Care in the US: Sthe US: SUPPORT StudyUPPORT StudyStatus of Palliative Care in Status of Palliative Care in the US: Sthe US: SUPPORT StudyUPPORT Study

SUPPORT Study : Study to Understand SUPPORT Study : Study to Understand Prognosis and Preferences for Outcomes Prognosis and Preferences for Outcomes and Risks of Treatments and Risks of Treatments

Approx. 10,000 patients, 5,000 deaths Approx. 10,000 patients, 5,000 deaths related to 9 serious illnesses during related to 9 serious illnesses during admission to 5 US teaching hospitalsadmission to 5 US teaching hospitals

SUPPORT: SUPPORT: Phase I FindingsPhase I FindingsSUPPORT: SUPPORT: Phase I FindingsPhase I Findings

46% of DNR orders were written 46% of DNR orders were written within 2 days of deathwithin 2 days of death

47% of physicians knew when 47% of physicians knew when their patients wanted to avoid CPRtheir patients wanted to avoid CPR

38% of patients spent 10+ days in ICU38% of patients spent 10+ days in ICU 50% of dying patients suffered severe pain50% of dying patients suffered severe pain High hospital resource useHigh hospital resource use

SUPPORT: SUPPORT: Phase II FindingsPhase II FindingsSUPPORT: SUPPORT: Phase II FindingsPhase II Findings

Compared to control patients, those patients Compared to control patients, those patients whose preferences and prognoses were whose preferences and prognoses were communicated experienced no change in:communicated experienced no change in:– incidence and timing of written DNR ordersincidence and timing of written DNR orders– Patient-MD agreement on CPR preferencesPatient-MD agreement on CPR preferences– Days in ICU, comatose or on ventilatorDays in ICU, comatose or on ventilator– PainPain– Hospital resource useHospital resource use

SUPPORT Study: SUPPORT Study: ConclusionsConclusions

SUPPORT Study: SUPPORT Study: ConclusionsConclusions

Substantial shortcomings in care for Substantial shortcomings in care for seriously illseriously ill

Improving doctor-patient communication Improving doctor-patient communication through intermediary is inadequate to through intermediary is inadequate to change practicechange practice

Care at the End of Life:Care at the End of Life:Reasons for DeficienciesReasons for DeficienciesCare at the End of Life:Care at the End of Life:

Reasons for DeficienciesReasons for Deficiencies

Deficiencies in professional training and Deficiencies in professional training and focusfocus

Deficiences in the system of careDeficiences in the system of care



Problems with the professionalProblems with the professional– Lack of physician training in symptom Lack of physician training in symptom

control, communication skills, ethics, use of control, communication skills, ethics, use of technology in end of life caretechnology in end of life care


Reasons for DeficienciesReasons for Deficiencies– Death as medical failureDeath as medical failure– No medical role in dyingNo medical role in dying– Palliative care skills undervaluedPalliative care skills undervalued– Role of the physician ends when care Role of the physician ends when care

shifts from curative to palliative shifts from curative to palliative– Always more biotechnologyAlways more biotechnology– Anxiety about one’s own mortalityAnxiety about one’s own mortality



Problems with the systemProblems with the system– No systems (policies and procedures) No systems (policies and procedures)

established to support excellence in established to support excellence in palliative care as part of routine inpatient palliative care as part of routine inpatient managementmanagement

– No access to specialized programs in No access to specialized programs in palliative carepalliative care

Addressing the Deficiencies: Addressing the Deficiencies: Models for Specialized Models for Specialized

ProgramsPrograms

Addressing the Deficiencies: Addressing the Deficiencies: Models for Specialized Models for Specialized

ProgramsPrograms

Models for home care Models for home care – US version of hospiceUS version of hospice– specialized nursing programsspecialized nursing programs– extensions of hospital-based palliative care extensions of hospital-based palliative care

servicesservices Hospital-based palliative care programsHospital-based palliative care programs

Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care


IInaugurated in 1997naugurated in 1997 First program jointly devoted to pain and First program jointly devoted to pain and

palliative carepalliative care A certified hospice program, the Jacob A certified hospice program, the Jacob

Perlow Hospice, within the palliative care Perlow Hospice, within the palliative care divisiondivision



Clinical ProgramsClinical ProgramsInpatient consultation team Inpatient consultation team

10-15 consults per week, 80% palliative care10-15 consults per week, 80% palliative care

Ambulatory practice Ambulatory practice

550 visits (100 new patients) per month, 80% pain550 visits (100 new patients) per month, 80% pain



Clinical ProgramsClinical ProgramsInpatient unitInpatient unit

14 beds, 80% palliative care/hospice occupancy14 beds, 80% palliative care/hospice occupancy

Jacob Perlow HospiceJacob Perlow Hospice

105 patient daily census (>80% home care)105 patient daily census (>80% home care)



Palliative Care DivisionAmbulatory Services

Non-Hospice Palliative Care Hospice Home Care

Physician-OrganizedRoutine

Office Visits

RN/SW-OrganizedCase Management/

Triage

Home Care NursingHigh Tech Nursing

Hospitalization

Referral toOther Departments

or Services(e.g., rehab)

Other Dept. Services(e.g., volunteers,

psychologist,nutritionist,

pastoral care)

Referral toOther Inpatient

Facilities/Long-Term Care

Bereavement



Institute for Education and Research in Institute for Education and Research in Pain and Palliative Care Pain and Palliative Care

Source of programs to improve routine Source of programs to improve routine practice practice – Conferences, professional training, websiteConferences, professional training, website– Special projectsSpecial projects

Special Project: Establishing Special Project: Establishing Benchmarks for the Care of the Benchmarks for the Care of the Imminently Dying InpatientImminently Dying InpatientNew York State Quality Measurement Grant New York State Quality Measurement Grant Beth Israel Medical Center, New York City, 1999-2000 Beth Israel Medical Center, New York City, 1999-2000

Principal InvestigatorsPrincipal Investigators– Marilyn Bookbinder, PhD Marilyn Bookbinder, PhD

– Russell K. Portenoy, MDRussell K. Portenoy, MD

Co-InvestigatorsCo-Investigators– Arthur Blank, PhDArthur Blank, PhD

– Cheryl Avellanet, RN, MPHCheryl Avellanet, RN, MPH

– Rose Anne Indelicato, RN, NPRose Anne Indelicato, RN, NP

– Myra Glajchen, DSWMyra Glajchen, DSW

– Pauline Lesage, MDPauline Lesage, MD

– Elizabeth Arney, RN, BSNElizabeth Arney, RN, BSN

– Peter Homel, PhDPeter Homel, PhD

Palliative Care for Advanced Palliative Care for Advanced Disease (PCAD)Disease (PCAD)

A guideline for the interdisciplinary A guideline for the interdisciplinary management of imminently dying patientsmanagement of imminently dying patients

Offers instruments to track process and Offers instruments to track process and outcome data related to institutional EOL outcome data related to institutional EOL carecare

PCAD: Key ElementsPCAD: Key ElementsPCAD: Key ElementsPCAD: Key Elements Respect patient autonomy, values, and Respect patient autonomy, values, and

decisionsdecisions Continually clarify goals of careContinually clarify goals of care Minimize symptom distress at EOLMinimize symptom distress at EOL Optimize the delivery of appropriate Optimize the delivery of appropriate

supportive interventions and consultationsupportive interventions and consultation Reduce unnecessary interventionsReduce unnecessary interventions

PCAD: Key ElementsPCAD: Key ElementsPCAD: Key ElementsPCAD: Key Elements

Support families by coordinating Support families by coordinating servicesservices

Provide bereavement services for Provide bereavement services for families and stafffamilies and staff

Facilitate the transition to alternative Facilitate the transition to alternative care settings, such as hospice, when care settings, such as hospice, when appropriateappropriate

PCAD as CQI ProcessPCAD as CQI ProcessPCAD as CQI ProcessPCAD as CQI ProcessFFind a process to improveind a process to improve

OOrganize a team that knows the processrganize a team that knows the process

CClarify current knowledge about the processlarify current knowledge about the process

UUnderstand causes of process nderstand causes of process

SSelect the processelect the process

CQI ProcessCQI ProcessCQI ProcessCQI Process

PCADPATHWAY

PLAN

DO

CHECK

ACT

PCAD Team PCAD Team Pain Medicine and Palliative Care: Nurses, Physicians, Pain Medicine and Palliative Care: Nurses, Physicians,

Social Workers, Psychologists, Hospice TeamSocial Workers, Psychologists, Hospice Team Patient Care Services (Nursing)Patient Care Services (Nursing) Quality Improvement and Tools ExpertsQuality Improvement and Tools Experts Evaluation and ResearchEvaluation and Research EthicsEthics ChaplainChaplain PharmacyPharmacy Social WorkSocial Work Leadership Teams and staff of pilot units (Oncology, Leadership Teams and staff of pilot units (Oncology,

Geriatrics, Hospice)Geriatrics, Hospice)

PCAD GuidelinesPCAD Guidelines

Consists of three componentsConsists of three components– PCAD Care Path - the interdisciplinary plan of PCAD Care Path - the interdisciplinary plan of

carecare– PCAD MD Order Sheet - a documentation tool PCAD MD Order Sheet - a documentation tool

and suggestions for medical managementand suggestions for medical management– PCAD Daily Patient Care Flowsheet - a PCAD Daily Patient Care Flowsheet - a

documentation tool for daily assessments and documentation tool for daily assessments and interventionsinterventions

PCAD EvaluationPCAD Evaluation

ToolsTools– Chart Audit Tool (Outcome Measure)Chart Audit Tool (Outcome Measure)– Process Audit (Process Measure)Process Audit (Process Measure)– Palliative Care Survey (Knowledge Measure)Palliative Care Survey (Knowledge Measure)– Afterdeath Interview (Family Satisfaction Afterdeath Interview (Family Satisfaction

Measure)Measure)– Focus Groups Focus Groups – Qualitative Comments Qualitative Comments

PCAD Care PathPCAD Care PathPCAD Care PathPCAD Care Path

Treatment/Interventions/AssessmentsTreatment/Interventions/Assessments Pain ManagementPain Management Tests/ProceduresTests/Procedures MedicationsMedications Fluids/NutritionFluids/Nutrition ActivityActivity

PCAD Care PathPCAD Care PathPCAD Care PathPCAD Care Path

ConsultsConsults Psychosocial NeedsPsychosocial Needs Spiritual NeedsSpiritual Needs Patient/Family EducationPatient/Family Education Discharge PlanningDischarge Planning

PCAD Care PathPCAD Care Path PAIN MANAGEMENTPAIN MANAGEMENT

– ASSESS PAIN Q 4 HR and evaluate within 1 hr post ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. intervention.

– Complete pain assessment scale. Complete pain assessment scale. – Anticipate pain needs.Anticipate pain needs.

TESTS/PROCEDURESTESTS/PROCEDURES– Usually unnecessary for patient/family comfort (All lab work Usually unnecessary for patient/family comfort (All lab work

and diagnostic work is discouraged)and diagnostic work is discouraged)

MEDICATIONSMEDICATIONS– Medication regimen focus is the relief of distressing Medication regimen focus is the relief of distressing

symptomssymptoms..

PCAD Care PathPCAD Care Path FLUIDS/NUTRITIONFLUIDS/NUTRITION

– DIET: Selective diet with no restrictionsDIET: Selective diet with no restrictions Nutrition to be guided by patient’s choice of time, place, Nutrition to be guided by patient’s choice of time, place,

quantities and type of food desired. Family may provide quantities and type of food desired. Family may provide food.food.

Educate family in nutritional needs of dying patientEducate family in nutritional needs of dying patient– IVs for symptom management only IVs for symptom management only – TRANSFUSIONS for symptom relief onlyTRANSFUSIONS for symptom relief only– Intake and Output – consider goals of care relative to patient Intake and Output – consider goals of care relative to patient

comfortcomfort– Weights – consider risks/benefits relative to patient comfortWeights – consider risks/benefits relative to patient comfort

PCAD Care PathPCAD Care Path

ACTIVITY:ACTIVITY: – ACTIVITY DETERMINED BY PATIENT’S ACTIVITY DETERMINED BY PATIENT’S

PREFERENCES AND ABILITY. PREFERENCES AND ABILITY.

– Patient determines participation in ADLs, i.e.,turning Patient determines participation in ADLs, i.e.,turning and positioning, bathing, transfersand positioning, bathing, transfers

CONSULTS:CONSULTS:– Initiate referrals to institutional specialists to optimize Initiate referrals to institutional specialists to optimize

comfort and enhance Quality of Life (QOL) only.comfort and enhance Quality of Life (QOL) only.

PCAD Care PathPCAD Care Path PSYCHOSOCIAL NEEDS PSYCHOSOCIAL NEEDS

– PSYCHOSOCIAL COMFORT ASSESSMENTPSYCHOSOCIAL COMFORT ASSESSMENT of: of: PatientPatient Primary caregiverPrimary caregiver Grieving process of patient & familyGrieving process of patient & family

– PSYCHOSOCIAL SUPPORT: Referral to Social WorkPSYCHOSOCIAL SUPPORT: Referral to Social Work Offer emotional support Offer emotional support Support verbalization and anticipatory grievingSupport verbalization and anticipatory grieving Encourage family caring activities as appropriate/individualized to family Encourage family caring activities as appropriate/individualized to family

situation and culturesituation and culture Facilitate verbal and tactile communicationFacilitate verbal and tactile communication Assist family with nutrition, transportation, child care, financial, funeral issuesAssist family with nutrition, transportation, child care, financial, funeral issues Assess bereavement needsAssess bereavement needs


SPIRITUAL NEEDSSPIRITUAL NEEDS– SPIRITUAL COMFORT ASSESSMENT SPIRITUAL COMFORT ASSESSMENT

Spiritual supportsSpiritual supports Spiritual needs and/or distressSpiritual needs and/or distress

– SPIRITUAL SUPPORT: Referral to ChaplainSPIRITUAL SUPPORT: Referral to Chaplain Provide opportunity for expression of beliefs, fears, and hopesProvide opportunity for expression of beliefs, fears, and hopes Provide access to religious resources Provide access to religious resources Facilitate religious practicesFacilitate religious practices


PATIENT/FAMILY EDUCATIONPATIENT/FAMILY EDUCATION – ASSESS NEEDS AND PROVIDE EDUCATION REGARDING:ASSESS NEEDS AND PROVIDE EDUCATION REGARDING:

Goals of Palliative Care for Advanced Disease Goals of Palliative Care for Advanced Disease Physical and psychosocial needs during the dying Physical and psychosocial needs during the dying

processprocess Coping techniques/Relaxation techniquesCoping techniques/Relaxation techniques Bereavement process and resourcesBereavement process and resources

PCAD Care PathPCAD Care Path DISCHARGE PLANNINGDISCHARGE PLANNING

– FOR DISCHARGE TO COMMUNITY: Referral to FOR DISCHARGE TO COMMUNITY: Referral to Pain Medicine & Palliative Care/Hospice/Home Pain Medicine & Palliative Care/Hospice/Home Care/Social Work as needed.Care/Social Work as needed.

– FOR DEATH:FOR DEATH: Post mortem care observing cultural and religious Post mortem care observing cultural and religious

practices and preferencespractices and preferences Provide for care of patient’s possessions as per Provide for care of patient’s possessions as per

family wishesfamily wishes Bereavement support for family and staffBereavement support for family and staff

PCAD Care Path Page 1PCAD Care Path Page 1BETH ISRAEL HEALTH CARE SYSTEM PETRIE DIVISION NORTH DIVISION KINGS HWY DIVISION Care Path: PALLIATIVE CARE for ADVANCED DISEASE

BAR CODE

2033

PRE-ADMISSION CONSIDERATION/ ADMISSION CRITERIA Disease at Advanced Stage – limited life expectancy HCP: Agent___________________ DNR Primary Caregiver______________ Next of Kin____________________

DISCHARGE OUTCOMES Discharge to Community: __ Hospice __ Home Care __ Alternate Care Facility __Home or Patient expired/Bereavement resources provided to family

STAMP ADDRESSOGRAPH NAME OF SERVICE/ATTENDING/ HOUSE MD:

PLAN START DATE: ONGOING DAYS:

TREATMENT/INTERVENTIONS/ASSESSMENTS

1) CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED DISEASE (PCAD) WITH PATIENT AND/OR FAMILY

2) FACILITATE DISCUSSION & DOCUMENTATION OF ADVANCE DIRECTIVES: Identify designated individuals & roles in decision-making: 1) Health Care Agent 3) Primary Care Giver 2) Durable Power of Attorney 4) Next-of-kin

Identify patient/family preferences regarding: Health Care Proxy Resuscitation status/DNR Living Will

3) INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY 4) COMFORT ASSESSMENT to include

Pain and symptom management needs Psychosocial coping , anticipatory grieving, and social/cultural needs Spiritual issues and distress

5) VS – None unless useful in promoting pt/family comfort 6) ASSESS FOR AND PROVIDE ENVIRONMENT CONDUCIVE TO MEET PATIENT

& FAMILY NEEDS

RREPEAT CARE PATH DAILY

DOCUMENT IN: DAILY PATIENT CARE FLOW SHEET PROGRESS NOTES

PAIN MANAGEMENT 1) ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. Complete pain assessment scale. Anticipate pain needs.

TESTS/PROCEDURES 1) USUALLY UNNECESSARY for patient/family comfort (All lab work and diagnostic work is discouraged)

MEDICATIONS 1) Medication regimen focus is the RELIEF OF DISTRESSING SYMPTOMS.

PCAD Care Path Page 1PCAD Care Path Page 1BETH ISRAEL HEALTH CARE SYSTEM PETRIE DIVISION

NORTH DIVISION KINGS HWY DIVISIONCare Path: PALLIATIVE CARE forADVANCED DISEASE

BAR CODE

2033

PRE-ADMISSION CONSIDERATION/ADMISSION CRITERIA Disease at Advanced Stage – limited life expectancy

HCP: Agent___________________ DNR Primary Caregiver______________ Next of Kin____________________

DISCHARGE OUTCOMES

Discharge to Community: __ Hospice __ Home Care __ Alternate Care Facility __Home or Patient expired/Bereavement resources provided to family

STAMP ADDRESSOGRAPHNAME OF SERVICE/ATTENDING/ HOUSE MD:

PLAN START DATE: ONGOING DAYS:

TREATMENT/INTERVENTIONS/ASSESSMENTS

1) CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED DISEASE (PCAD)WITH PATIENT AND/OR FAMILY

2) FACILITATE DISCUSSION & DOCUMENTATION OF ADVANCE DIRECTIVES: Identify designated individuals & roles in decision-making: 1) Health Care Agent 3) Primary Care Giver 2) Durable Power of Attorney 4) Next-of-kin

Identify patient/family preferences regarding: Health Care Proxy Resuscitation status/DNR Living Will

3) INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY4) COMFORT ASSESSMENT to include

Pain and symptom management needs Psychosocial coping , anticipatory grieving, and social/cultural needs Spiritual issues and distress

5) VS – None unless useful in promoting pt/family comfort6) ASSESS FOR AND PROVIDE ENVIRONMENT CONDUCIVE TO MEET PATIENT

& FAMILY NEEDS

RREPEAT CARE PATH DAILY

DOCUMENT IN: DAILY PATIENT CARE FLOW SHEET PROGRESS NOTES

PAIN MANAGEMENT 1) ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. Complete painassessment scale. Anticipate pain needs.

TESTS/PROCEDURES 1) USUALLY UNNECESSARY for patient/family comfort (All lab work and diagnostic work is discouraged)

MEDICATIONS 1) Medication regimen focus is the RELIEF OF DISTRESSING SYMPTOMS.

FLUIDS/NUTRITION 1) 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

2) IVs for symptom management only3) TRANSFUSIONS for symptom relief only4) INTAKE AND OUTPUT – consider goals of care relative to patient comfort5) WEIGHTS – consider risks/benefits relative to patient comfort

Patient Daily Care FlowsheetPatient Daily Care Flowsheet Notes advanced directive decisions dailyNotes advanced directive decisions daily Assesses comfort level using scale of 1 - 5 Assesses comfort level using scale of 1 - 5 Assesses pain q 4 hours and within 1 hour of Assesses pain q 4 hours and within 1 hour of

interventionintervention Assesses Eyes, Lips, Mouth, Breathing, Assesses Eyes, Lips, Mouth, Breathing,

Nutrition, IV lines, Mobility, Elimination, Nutrition, IV lines, Mobility, Elimination, Skin/Wound, Sleep, Psychosocial, and Family Skin/Wound, Sleep, Psychosocial, and Family StatusStatus

Assessment and Intervention indicated by initial Assessment and Intervention indicated by initial (check) q shift(check) q shift

PCAD Daily Patient Care PCAD Daily Patient Care Flowsheet, P1Flowsheet, P1

Beth Israel Health Care System Carepath: Palliative Care for Advanced Disease DAILY PATIENT CARE FLOW SHEET

BAR CODE ADDRESSOGRAPH

016 DATE: DNR NO DNR HCP NO HCP HCP AGENT: CAREGIVER:

COMFORT ASSESSMENT: Comfort Level Patient states or appears to be 1. Always comfortable 2. Usually comfortable 3. Sometimes comfortable 4. Seldom comfortable 5. Never comfortable TIME (per MD order)

PATIENT Comfort Level (Indicate number)

T

P

R

VITAL SIGNS ONLY AS ORDERED

BP

TIME

LOCATION

PAIN RATING

PAIN

RELIEF/SEDATION

PAIN/RELIEF SCALE KEY

NONE WORST

0 1 2 3 4 5 6 7 8 9 10 COMPLETE NO RELIEF RELIEF

SEDATION SCALE

0 Alert 1 Awake but drowsy 2 Drowsy/Easily awakened 3 Sleeping/Easily awakened 4 Sleeping/Difficult to awaken 5 Unarousable

* See Progress Note A = Assessment I = Intervention Check mark = present or done Needs MD Order

Time Time Time

E Moist/Clear B Rate: Normal N Full meal Y Inflamed R Rapid U > 50% E Dry/Crusted E Slow T < 50% S A Rhythm: Reg R Refused

A

T Irregular I Nausea/vomiting Routine Care H Depth: Normal T NPO

Artificial tears I Shallow I Dysphagia Oint/Lubricant N Labored O

G Secretions:None N

A

I

Mild Diet as tolerated L Smooth/moist Copious NG/G tube I Dry/Cracked Breath sounds: Enteral feeding P Ulcerated Clear Feeding set changed S Diminished Residual vol-cc’s

A

Absent Placement check Routine Care Crackles Meds as ordered Topical Lubricant Wheeze

I

Dyspnea I IV site_________

I

V No S&S infil/phleb M Moist

A

Dry & intact O Dry None L

A

U Coated Reposition I IV Dsg change T Stomatitis O2 via___@___lpm N IV Tubing change H Suctioning q____ E See progress note

A

Trach Care S Cap Change I Routine Care

I

Elevate HOB

I

Huber needle change


Time Time Time

M Bedbound S Normal F Engaged w ptO OOB Chair L Interrupted Cycle A Coping w lossB Amb w Assist E Insomnia M DistressedI OOB ad lib E

A

IL

A

BR Privileges P ModifyEnvironment

L

A

I T&P per pt comfort Relaxation Y Goals of carereviewed

T ROM q___ Meds as orderY Assistive Device

I

Ted Stocking(s) P Awake/alert

Encourage verbal& non-verbalcommunication w pt

I

Side Rails Up S Respoonds to voice Family Meeting

E Voiding qs Y Resp to tactile stimL Anuria C Unresponsive

Bereavementsupport

I Incontinent Urine H OrientedM Bowel Movement O ConfusedI Incontinent feces S HallucinatingN Diarrhea O Calm

I

A Constipation C Anxiety M AM CareT

A

I Agitated I PM CareI Foley Catheter A Depression S PresUlcer Prev PlanO Texas Catheter L Spiritual distress C Fall Prev PlanN Inc’t Pads

A

E Precautions: Enema Emotional support L Isolation:Meds as ordered L Siderails UpVerbal/tactile

stimulation A ID Bracelet

I

SocialWorker visit N Allergy Bracelet

S Normal/Intact Chaplain visit E DNR BraceletK Feverish O Post Mortem careI Diaphoretic UN Pressure Ulcer

Stg___

I

S

Ostomy site D/I Comments/Progress NotesEdema___Pruritis

A

Cool/MottledW SiteO Dressing_______U Dry & IntactN Drain_________D Drainage

OdorC Ostomy site careA Tube site careRE

I

PATIENT/FAMILY EDUCATION: S ee IPFER

PCAD Care Path: Initiated R eviewed/Continue With Plan Of Care Revised (See Progress Note)

OTHER NURSING DOCUMENTATION: I & O SHEET RESTRAINT FLOW SHEET NEURO-ASSESSMENT OTHER________________

SIGNATURE/TITLE DATE SHIFT INITIALS SIGNATURE/TITLE DATE SHIFT INITIALS1. 6.2. 7.3. 8.4. 9.5. 10.

Continuum Health Partners, Inc. Department of Pain Medicine & Palliative Care

PCAD: Doctor’s Order SheetPCAD: Doctor’s Order Sheet PCAD ordered by attending physicianPCAD ordered by attending physician Previous medications, routine labs and tests Previous medications, routine labs and tests

should be reviewed and rewritten when should be reviewed and rewritten when PCAD orderedPCAD ordered

Suggestions for medications but no required Suggestions for medications but no required ordersorders

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

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

PCAD: PCAD: Palliative Care for Palliative Care for Advanced DiseaseAdvanced Disease


Implemented on 3 unitsImplemented on 3 units– 4 Karpas (Pain and Palliative Care)4 Karpas (Pain and Palliative Care)– 9 Dazian (Oncology)9 Dazian (Oncology)– 7 Linsky (Geriatrics)7 Linsky (Geriatrics)

3 other units used for comparison3 other units used for comparison

Implementing PCADImplementing PCAD

M D O rde r shee ts and c lin ical gu ide lines

D ea th and B e reavem en t C a reF o llow-up w ith fam ily

C om fo rt ca re pa th

E nd -o f-Life Ca re P a th im plem en ted

F am ily m ee ting /team m ee ting as necessa ry to c la rify goa ls of ca reand e lem en ts o f the Ca re Pa th.

A ttending Phys ician agrees and discusses change in trea tm en t s tra tegyw ith pa tien t and fam ily , and o rde rs im plem en tation o f ca re pa th.

P a tient expected to d ie w ith in one to tw o w eeks



Unit staff did daily/weekly review and Unit staff did daily/weekly review and considered the following question: considered the following question: ““Who would you not be surprised to have die Who would you not be surprised to have die

during this hospitalization”during this hospitalization”

PCAD candidates discussed with PCAD candidates discussed with attending physician or designee; PCAD attending physician or designee; PCAD activation required attending orderactivation required attending order



PCAD units received in-servicing for PCAD units received in-servicing for nurses and had access to a specialist nurses and had access to a specialist nurse on an ongoing basisnurse on an ongoing basis

Each PCAD unit had an identified local Each PCAD unit had an identified local championchampion

Educational Strategies for Educational Strategies for PCAD UnitsPCAD Units

Determine who will do the educationDetermine who will do the education Use a 4 phase approachUse a 4 phase approach

– Introduction to the clinical pathwayIntroduction to the clinical pathway– Inservice on the clinical pathway using case Inservice on the clinical pathway using case

history and actual documentshistory and actual documents– Reference Manual on each unitReference Manual on each unit– PCAD Liaison routinely on unit 1 - 2 PCAD Liaison routinely on unit 1 - 2

times/weektimes/week

Chart Audit ToolChart Audit Tool Based on Fin’s Chart Audit Tool Based on Fin’s Chart Audit Tool Pre and Post audits on pilot and control unitsPre and Post audits on pilot and control units Focus on:Focus on:

– Advanced DirectivesAdvanced Directives– Treatments and proceduresTreatments and procedures– Referrals and consults Referrals and consults – Pain and symptomsPain and symptoms– Discharge planning or BereavementDischarge planning or Bereavement

Process Audit Tool Process Audit Tool

Documented/Verbal ProcessDocumented/Verbal Process Referral to PCADReferral to PCAD Clarification of goals with patient/familyClarification of goals with patient/family Pain and symptomsPain and symptoms Utilization of documentsUtilization of documents Problems/Issues in implementation of PCADProblems/Issues in implementation of PCAD Staff difficulties with end of life careStaff difficulties with end of life care

Staff KnowledgeStaff Knowledge

Ross’ Palliative Care Survey (1996)Ross’ Palliative Care Survey (1996) Nursing Assistant Pain Management SurveyNursing Assistant Pain Management Survey All unit and house staff surveyed prior to All unit and house staff surveyed prior to

education about PCADeducation about PCAD All staff surveyed post 6 months All staff surveyed post 6 months

implementation of PCADimplementation of PCAD

Family Satisfaction SurveyFamily Satisfaction Survey

Planned Afterdeath InterviewPlanned Afterdeath Interview– Advanced DirectivesAdvanced Directives– Preferred Place of DeathPreferred Place of Death– Discussion of Goals of CareDiscussion of Goals of Care– Last Week of LifeLast Week of Life

Not implemented due to concerns about Not implemented due to concerns about instrumentinstrument

PCAD: Institutional BarriersPCAD: Institutional BarriersPCAD: Institutional BarriersPCAD: Institutional Barriers

EOL awareness/discomfort/readinessEOL awareness/discomfort/readiness Communication deficitsCommunication deficits Unit ResistanceUnit Resistance Knowledge deficitKnowledge deficit Methodology/DocumentationMethodology/Documentation

PCAD: First Six MonthsPCAD: First Six Months PCAD: First Six MonthsPCAD: First Six MonthsBarriers to Using PCAD - Six Month Review

9 Dazian 7 LinskyNumber of Deaths (Post PCAD to March 2000) 22 18PCAD Referrals (Post PCAD to March 2000) 1 4

Patients not referred to PCAD – Post PCAD to February 2000Patient wanted curative treatment continued 7 1Unexpected death (not identified for PCAD) 3 3Patient identified for PCAD but died before PCAD initiated 2 1Physician resistant or refused pathway 0 3Physician felt already giving care 2 0Unkown 3 3

Referrals9 Dazian 7 Linsky

Hospice Referrals (Post PCAD to March 2000) 34 21Department of Pain Medicine and Palliative Care Referrals(February 1, 2000 to April 10, 2000) 16 10

PCAD: Preliminary Findings PCAD: Preliminary Findings from Chart Reviewfrom Chart Review

PCAD: Preliminary Findings PCAD: Preliminary Findings from Chart Reviewfrom Chart Review

Pre-PCAD: Symptom assessment and use of Pre-PCAD: Symptom assessment and use of consultations greater on Palliative Care Unit consultations greater on Palliative Care Unit than other PCAD units or comparison unitsthan other PCAD units or comparison units

Pre to Post assessment of symptoms improved Pre to Post assessment of symptoms improved on PCAD units on PCAD units and and comparison unitscomparison units

Some items improved more on PCAD units, Some items improved more on PCAD units, but no statistical significance but no statistical significance

PCAD: Preliminary Findings PCAD: Preliminary Findings from Staff Assessmentsfrom Staff Assessments

PCAD: Preliminary Findings PCAD: Preliminary Findings from Staff Assessmentsfrom Staff Assessments

Significantly increased nurse knowledge Significantly increased nurse knowledge on Palliative Care Quizon Palliative Care Quiz

PCAD: Practical Outcomes PCAD: Practical Outcomes After Six MonthsAfter Six Months


All three PCAD units have opted to All three PCAD units have opted to continue using PCAD after funding endscontinue using PCAD after funding ends

On the Pain and Palliative Care unit, PCAD On the Pain and Palliative Care unit, PCAD viewed as tool to improve documentationviewed as tool to improve documentation

On the Oncology Unit, PCAD viewed as On the Oncology Unit, PCAD viewed as direct means to increased interdisciplinary direct means to increased interdisciplinary discussion about goals of care, increased discussion about goals of care, increased staff comfort, identify education needsstaff comfort, identify education needs



On the Oncology Unit, hospice referrals and On the Oncology Unit, hospice referrals and DPMPC referrals have risen above DPMPC referrals have risen above historical levelshistorical levels

Insights and LessonsInsights and Lessons

Culture change requires shift in systems, Culture change requires shift in systems, access to experts, and local championsaccess to experts, and local champions

PCAD can be an avenue to culture change, PCAD can be an avenue to culture change, even if used sparinglyeven if used sparingly

Insights and LessonsInsights and Lessons PCAD can be improved by PCAD can be improved by

– More integration of formal CQI methods More integration of formal CQI methods focused on symptoms or other concernsfocused on symptoms or other concerns

– More culture-friendly criteria for use (e.g., More culture-friendly criteria for use (e.g., “comfort care”)“comfort care”)

– More flexibility in the involvement of More flexibility in the involvement of physicians and unit staffphysicians and unit staff

– More testingMore testing

palliative care: trends and treatment pathways n definition and models n challenge of end-of-life...

Documents

routine care palliative

disease palliative care

palliative care integration

aspects of palliative

goal of palliative care

life care n

type of care slide

specialized care n access