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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: 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…
Palliative Care: Palliative Care: A Therapeutic ModelA Therapeutic Model
Palliative Care: Palliative Care: A Therapeutic ModelA Therapeutic Model
“… “…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: Palliative Care: A Therapeutic ModelA Therapeutic Model
Palliative Care: Palliative Care: A Therapeutic ModelA Therapeutic Model
“ “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
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
Palliative Care: The Need for Palliative Care: The Need for Specialized CareSpecialized Care
Palliative Care: The Need for Palliative Care: The Need for Specialized CareSpecialized Care
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
Palliative Care: The Need for Palliative Care: The Need for Specialized CareSpecialized Care
Palliative Care: The Need for Palliative Care: The Need for Specialized CareSpecialized Care
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
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
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
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– 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
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
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
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
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
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
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
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)
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative 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
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
Department of Pain MedicineDepartment of Pain Medicineand Palliative Careand Palliative Care
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
PCAD Care PathPCAD Care Path
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
PCAD Care PathPCAD Care Path
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
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
PCAD Daily Patient Care PCAD Daily Patient Care Flowsheet, P1Flowsheet, P1
PCAD Daily Patient Care PCAD Daily Patient Care Flowsheet, P2Flowsheet, P2
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
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
PCAD: PCAD: Palliative Care for Palliative Care for Advanced DiseaseAdvanced Disease
PCAD: PCAD: Palliative Care for Palliative Care for Advanced DiseaseAdvanced Disease
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: PCAD: Palliative Care for Palliative Care for Advanced DiseaseAdvanced Disease
PCAD: PCAD: Palliative Care for Palliative Care for Advanced DiseaseAdvanced Disease
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
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
PCAD: Practical Outcomes PCAD: Practical Outcomes After Six MonthsAfter Six Months
PCAD: Practical Outcomes PCAD: Practical Outcomes After Six MonthsAfter Six Months
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
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