Eating the Elephant (Read-Only)4/16/18 2 “Eating the Elephant”: Improving End-of-Life Care...
Transcript of Eating the Elephant (Read-Only)4/16/18 2 “Eating the Elephant”: Improving End-of-Life Care...
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CenterforRuralHealth
• Established in 1980, at The University of North Dakota (UND) School of Medicine and Health Sciences in Grand Forks, ND
• One of the country’s most experienced state rural health offices
• UND Center of Excellence in Research, Scholarship, and Creative Activity
• Home to seven national programs
• Recipient of the UND Award for Departmental Excellence in Research
Focus on– Educating and Informing– Policy– Research and Evaluation– Working with Communities– American Indians– Health Workforce– Hospitals and Facilities
ruralhealth.und.edu
Center for Rural Health
ND Rural Community-Based Palliative Care Project Communities
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“Eating the Elephant”:Improving End-of-Life Care
“One Bite at A Time”by
Nancy Joyner, MS, CNS-BC, APRN, ACHPN®
First Steps® Advance Care Planning Facilitator & Instructor&
Sally May, RN, BSN, CH-GCNFirst Steps® Advance Care Planning Facilitator & Instructor
CAH Quality Network Palliative Care WorkshopApril 17, 2018 l Minot, ND
The Allergy AnalogyImagine that an 80-year-old
woman with a known medication allergy comes to your hospital for care but . . .
NOWImagine that same 80-year-
old woman with severe COPD with frequent encounters with your health system and has no health care directive . . .
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“Conversation Ready”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Potential Opportunity for Improving End-of-Life Care
07/01/2016-06/30/2017
Objectives• Engage: Outline strategies for engaging patients and
families in conversations about end-of-life care. • Steward: Summarize activities that document and
communicate each patient’s end-of-life care wishes• Respect: Utilize palliative care approaches to create
a patient-centered plan nearing end-of-life • Exemplify: Identify techniques to encourage staff to
have end-of-life conversations with their own families• Connect: Integrate prevalent cultural and religious
practices of their community into the advance care planning process.
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Framework for Improving End-of-Life Care
Engage with patients and families to understand what matters most to them at the end of life.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Framework for Improving End-of-Life Care
Steward information about each patient’s end-of-life care wishes as reliably as we do allergy information.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Framework for Improving End-of-Life Care
Respect people’s wishes for care at the end-of-life by partnering to develop a patient-centered plan of care.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Framework for Improving End-of-Life Care
Exemplify the work in our own lives so that we fully understand the benefits and challenges, i.e. “walk the talk”.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Framework for Improving End-of-Life Care
Connect in a manner that is culturally and individually respectful.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Getting Started • Collect baseline data
[% of individuals with accessible HCD]
• Understand current process [chart review]
• Set an AIM [SMART]
• Identify a subpopulation [consider > 65 yr]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Framework for Improving End-of-Life Care
Engage with patients and families to understand what matters most to them at the end of life.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
What is Advance Care Planning (ACP)
A person-centered, ongoing process of communication that facilitates individuals’ understanding, reflection and discussion of their goals, values and preferences for future healthcare decisions.
Respecting Choices®www.respectingchoices.org
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Chronic disease or functional decline
Advancing chronic illness
Multiple co-morbidities, with increasing frailty
Allowing Natural DeathMaintain &
maximize health and independence
Healthy and independent
Compassion, Support and Education along the Health-Illness Continuum
AdvanceCarePlanning
© Patricia A. Bomba, M.D., F.A.C.P.
Framework for Improving End-of-Life Care
How many facilitators do we need?• Identify targeted
population• Advance care planning
(ACP) goal [%]• Current ACP status• ACP facilitator Need
[1 ½ - 2 hrs per facilitated conversation]
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Framework for Improving End-of-Life Care
• Standardized advance care planning materials
Honoring Choices North Dakota
https://www.honoringchoicesnd.org/
The ConversationProject
https://theconversationproject.org/
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Framework for Improving End-of-Life Care
• Train advance care planning facilitators
Honoring Choices North Dakota
https://www.honoringchoicesnd.org/
UND Center for Rural Health
ACP Facilitator scholarship
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Framework for Improving End-of-Life Care
Community involvement
The Conversation ProjectResources for Healthcare
https://theconversationproject.org/resources/healthcare/
McCutcheonAdamsK, Kabcenell A,LittleK, Sokol-Hessner L. “ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Framework for Improving End-of-Life Care
• Community involvementNational Healthcare
Decisions Day April 16-22
Toolkit availablehttps://www.honoringcho
icesnd.org/
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Framework for Improving End-of-Life Care
Steward information about each patient’s end-of-life care wishes as reliably as we do allergy information.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
HCND Available Documents• Short Form• Long Form• Other forms- Five Wishes, ND Catholic• POLST program and Form
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What is POLST• Physician Orders for Life Sustaining Treatment• 1991- Originated in Oregon• vEnd of Life care not consistently honored.• vAdvance Directives inadequate or did not exist• vAddresses needs of serious ill and frail• vAddresses medical emergency- life sustaining
needs• vSpread to other states- NY, PA, WA, WV, WI
• vUnique legal, medical, cultural, and environment contexts
Philosophy of the POLST Paradigm
• Individuals have the right to make their own health care decisions• These rights include:• Making decisions about life-sustaining treatment• Describing desires for life-sustaining treatment to
health care providers• Receiving comfort care while having wishes
honored
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Philosophy of POLST Paradigm
Individuals have the right to make their own health care decisions These rights include:oMaking decisions about life-
sustaining treatmentoDescribing desires for life-sustaining
treatment to health care providersoReceiving comfort care while having
wishes honored
POLST Outcomes• Improves the quality of patient care• Reduces medical risks• Identifies patients’ values and wishes regarding
medical treatment• Communicates and respects patient’s wishes by
creating portable medical orders.
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POLST...• Provides thoughtful, facilitated advance care
planning conversations• Occurs between health care professionals and
patients and those close to them• Determines what treatments patients do and do
not want• Based on their personal beliefs and current state of
health.
Who Should Have a POLST Conversation and Form?
• Not for everyone• Patients with serious illness, frailty
The Surprise question:“Would you be surprised if this patient died in the next
12 months?”
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The POLST Conversation• ·POLST is not just a check-box form.• ·The POLST conversation provides context for
patients/families to:• –Make informed choices.• –Identify goals of treatment.
Who Should Have a POLST
• Not for everyone• Patients with serious illness, frailty• The Surprise question:
“Would you be surprised if this patient died in the next 12
months?”
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POLST…• Provides thoughtful, facilitated advance care
planning conversations• Occurs between health care professionals and
patients and those close to them • Determines what treatments patients do and do
not want • Based on their personal beliefs and current state of
health.
How POLST Fit In?Adapted with permission from California POLST Education Program © January 2010 Coalition for Compassionate Care of California- With
Permission
Age 18
Complete and Health Care Directive
Update Health Care Directive Periodically
Diagnosed with Advanced Illness or Frailty(at any age or last year of life)
Complete a POLST Form
Change in health status
May Complete a new POLST Form
Treatment Wishes Honored
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How POLST and HCD Work Together?• Complement each other• Not intended to replace each other• A Health Care Directive is necessary to appoint a
legal health care representative and provide instructions for future life-sustaining treatments.
• The Advance Directive is recommended for all adults over 18, regardless of their health status
• POLST is recommended for elderly, seriously ill. “ I wouldn’t be surprised if the person died in the next year”
Comparing POLST Form to Healthcare
DirectiveHealthcare Directive POLST Paradigm Forms
Population All adults >18 y.o. Any age, serious illness, at end of life or frailty
Time Frame Future care/future conditions
Current care/current conditions
Where Completed Any setting, not necessarily medical
Medical setting
Resulting Product Healthcare agent appointed and/or statement of preferences
Medical orders based on shared decision making
Healthcare Agent Role Cannot complete Can consent if patient lacks capacity
EMS Role Does not guide EMS Guides EMS as a medical order
Portability Patient/Family Responsibility
Healthcare Professional Responsibility
Periodic Review Patient/Family Responsibility
Healthcare Professional Responsibility
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Our Role in the POLST Paradigm
• Maximum Communication• Education• Clarification• Team and family conferencing
Development of POLST in ND2005- Interest in Grand Forks2007-2010 Grand Forks Pilot Program2010- Endorsed by the ND Medical AssociationUnder the NDMA Ethics Committee2013- Assigned to ND Healthcare Review (Minot)Sally May, RN, BSN, Quality Improvement Specialist• Invited interested parties throughout the state• Grew from 10 to 40 members
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Development of ND POLST (cont)
2013- current: POLST workgroup formed, including representation from:• EMT, RN, APRN, SW, Chaplain, MD, JD• Fargo, Bismarck, Minot, Grand Forks2014-2016:original 2007 Altru POLST form updated2016- POLST provider feedback survey sent out• 25 completed responses• 24 accepted the entire form2017- July ND POLST went statewide2018- January ND POLST is endorsed Nationally
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Who Can Help Complete POLST?• Healthcare providers – “licensed, certified,
or otherwise authorized to provide healthcare in the normal course of business.”
• Best practice suggests use of those trained in the POLST Conversation:– Physicians– Nurses, Nurse Practitioners, Physician
Assistants– Social Workers– Chaplains– Social Service Designees
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Diagram of POLST Medical Interventions
CPR
Comfort-Focused Treatment
Full Treatment*
Selective Treatment
*Consider time/prognosis factors under “Full Treatment”“Trial Period of Full Treatment” may be checked if prolonged life
support is not desired.(with permission, Coalition for Compassionate Care of California, 2016)
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When Should POLST be Reviewed?
• Transfer from one care setting to another.
• Change in patient’s health condition.
• Patient’s treatment preferences change.
• Patient Care Conference.
• Recommendation: Update POLST forms to the 2018 version when reviewing 2007 POLST forms.
Where Should We Keep POLST?
Original ND POLST with green trim stays with patient
• At SNF/Hospital:– File in medical chart (with HCD)– Send original with patient upon return to
home/SNF/hospital.– Keep copy if patient transferred; review
POLST upon patient’s return.
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Current Status• Website presence-
www.honoringchoicesnd.org/polst• CME on HCND website• Policies for hospital, nursing home,
EMS through National POLST Care Continuum
toolkit-
POLST ResourcesNorth Dakota-https://www.honoringchoicesnd.org/polst/
National POLST Care Continuum-Toolkit- http://polst.org/toolkit/?pro=1
Webinars-http://polst.org/webinars/?pro=1#2017toolkit
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Framework for Improving End-of-Life Care
• Identify opportunities to capture and store end-of-life care information in your electronic health recordo Entryo Storageo Retrievalo Communicated on
transitionsMcCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Framework for Improving End-of-Life Care
Respect people’s wishes for care at the end-of-life by partnering to develop a patient-centered plan of care.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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What is Palliative CarePalliative (Latin): To Cloak or Cover, to alleviate,
“to reduce the violence of”•“ An approach which improves the quality of life of patients and families facing life threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual.”
•(www.who.int/en)
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Palliative Care (cont.)• Provides relief from pain and other distressing
symptoms.• Affirms life and regards dying as a normal process.• Intends neither to hasten or postpone death.• Integrates the psychological and spiritual aspects of
patient care.• Offers a support system to help patients live as
actively as possible until death.•(www.who.int/en)
Palliative Care: YOU Are a Bridge
(Original from the MN Network of Hospice and Palliative Care, now
Getpalliativecare.org)
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Characteristics of Palliative Care Philosophy and Delivery
• Interdisciplinary care• Excellent communication between patients,
families, health care providers• Services provided concurrently with or independent
of curative/life-prolonging care• Hopes for peace and dignity are supported
throughout the course of illness and pre-post dying process
(ELNEC,2017)
Current Practice of Hospice and Palliative Care
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Palliative Care Model
(Ferris et al, 2001)
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“Modern Medicine”
Hospice
Palliative
Care
PhysicalFunctional AbilityStrength/Fatigue
Sleep & RestNausea
AppetiteConstipation
Pain
PsychologicalAnxiety
DepressionEnjoyment/Leisure
Pain DistressHappiness
FearCognition/AttentionQuality of Life
SocialFinancial BurdenCaregiver Burden
Roles and RelationshipsAffection/Sexual Function
Appearance
SpiritualHope
SufferingMeaning of Pain
ReligiosityTranscendence
http://prc.coh.org1
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Features of Primary Palliative Care The 4 C’s of Palliative Care
• Comfort-Management of disease-related complications, pain and symptom control, psychological and spiritual care, care of the dying
• Communication- Informed coordination of care or continuity.
• Choices- Information, time-limited trial with goals• Control- Patient-centered, shared decision making,
capacity versus substitute decision making
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How Much Can We Share?
• What is their understanding• What do they want to know- how much?• Team approach• Generalization• Neutral value
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Open, Honest Communication
• Convey caring, sensitivity, compassion• Provide information in simple terms• Patient awareness of dying• Maintain presence
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Palliative Role in Shared Decision Making
IdentificationEducationClarificationTeachBackFollow-throughNeutralValueAdvocacy
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Palliative Care in NDNorth Dakota Palliative Care Task Force
https://ruralhealth.und.edu/projects/nd-palliative-care-task-force
North Dakota Rural Community-Based Palliative Carehttps://ruralhealth.und.edu/projects/community-
palliative-care
Framework for Improving End-of-Life Care
Exemplify the work in our own lives so that we fully understand the benefits and challenges, i.e. “walk the talk”.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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Promising Changes Examples (and Organization Testing the Change)
Principle: Engage with patients and families to understand what matters most to them at the end of life
Identify and segment patients.
•· Create new workflows in the inpatient palliative care department to identify the subpopulation of patients that need a life care planning conversation, and engage them in that conversation. (Kaiser Permanente San Jose Medical Center) •· Use a structured template for ward rounds to first identify patients and then document their wishes. (NHS Lothian, Scottish Government Health Department) •· Conduct a Senior Assessment during internal medicine outpatient visits to introduce POLST (Physician Orders for Life-Sustaining Treatment) discussions. (St. Jude Medical Center)
Develop and use materials and tools that help care teams conduct and document end-of- life care conversations with patients and their families.
•· Revise health care proxy materials and outreach using patient and family advisors. (Beth Israel Deaconess Medical Center) •· Use the TCP Conversation Starter Kit and advance directive packet with hospitalized patients enrolled in COPD (Chronic Obstructive Pulmonary Disease) Education Program. (Renown Health) •· Develop a conversation template tool for nurses and medical providers; the tool has disease- specific trajectories on the back of the template to enable patients to locate themselves on the trajectory. (The University of Kansas Hospital)
Creatively use staff to operate at “top of license.”
•· Use a designated Conversation Ready Nurse to see palliative care referrals for whom the primary need is to identify and clarify end-of-life wishes. (Care New England) •· Use case managers and nurses in community work (elder services agency) to ask about and document proxy information; proxy information is required by some skilled nursing facilities when patients are discharged from the hospital. (Elder Services of Merrimack Valley)
Train staff to be more effective at facilitating end-of-life care conversations.
•· Train staff using Gundersen Lutheran Respecting Choices® model.11 (Erie County Medical Center) •· Create new four-hour training program for staff around advance directives, decision making, and •POLST. (Penn Medicine)
Create upstream community engagement.
•· Hold large-scale public events to raise awareness (“A Little More Conversation” with Elvis theme). (Knoxville Academy of Medicine) •· Have public “Deciding Over Dinner” event. (Reid Hospital) •· Develop community class: “Your Life, Your Choices.” (Virginia Mason Medical Center)
Promising Changes Examples (and Organization Testing the Change)
Principle: Engage with patients and families to understand what matters most to them at the end of life
Identify and segment patients.
•· Create new workflows in the inpatient palliative care department to identify the subpopulation of patients that need a life care planning conversation, and engage them in that conversation. (Kaiser Permanente San Jose Medical Center) •· Use a structured template for ward rounds to first identify patients and then document their wishes. (NHS Lothian, Scottish Government Health Department) •· Conduct a Senior Assessment during internal medicine outpatient visits to introduce POLST (Physician Orders for Life-Sustaining Treatment) discussions. (St. Jude Medical Center)
Develop and use materials and tools that help care teams conduct and document end-of- life care conversations with patients and their families.
•· Revise health care proxy materials and outreach using patient and family advisors. (Beth Israel Deaconess Medical Center) •· Use the TCP Conversation Starter Kit and advance directive packet with hospitalized patients enrolled in COPD (Chronic Obstructive Pulmonary Disease) Education Program. (Renown Health) •· Develop a conversation template tool for nurses and medical providers; the tool has disease- specific trajectories on the back of the template to enable patients to locate themselves on the trajectory. (The University of Kansas Hospital)
Creatively use staff to operate at “top of license.”
•· Use a designated Conversation Ready Nurse to see palliative care referrals for whom the primary need is to identify and clarify end-of-life wishes. (Care New England) •· Use case managers and nurses in community work (elder services agency) to ask about and document proxy information; proxy information is required by some skilled nursing facilities when patients are discharged from the hospital. (Elder Services of Merrimack Valley)
Train staff to be more effective at facilitating end-of-life care conversations.
•· Train staff using Gundersen Lutheran Respecting Choices® model.11 (Erie County Medical Center) •· Create new four-hour training program for staff around advance directives, decision making, and •POLST. (Penn Medicine)
Create upstream community engagement.
•· Hold large-scale public events to raise awareness (“A Little More Conversation” with Elvis theme). (Knoxville Academy of Medicine) •· Have public “Deciding Over Dinner” event. (Reid Hospital) •· Develop community class: “Your Life, Your Choices.” (Virginia Mason Medical Center)
Kayla’s Story“My family acted in what we believed to be my brother’s best interests and have peace about the decisions made. However, that experience clearly showed that advanced care planning is not just a “good idea”, it gives people a voice in their own healthcare decisions when their family may be too grief stricken to speak.”
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Framework for Improving End-of-Life Care
"walk the talk"• Provide advance care
planning facilitation for staff
• Time back for completed and documented advance care planning
• Include education in mandatory training events
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
Framework for Improving End-of-Life Care
Connect in a manner that is culturally and individually respectful.
McCutcheonAdamsK,Kabcenell A,LittleK,Sokol-Hessner L.“ConversationReady”:AFrameworkforImprovingEnd-of-LifeCare.IHIWhitePaper.Cambridge,Massachusetts:InstituteforHealthcareImprovement;2015.(Availableatihi.org)
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The Eight Domains of Palliative Care
NationalConsensusProject,2013EightDomainsforQualityPractice
ThetargetpublicationdatefortheNCPClinicalPracticeGuidelinesforQualityPalliativeCare,4th edition,isJuly2018.
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Domain1:Structure&ProcessesofCare
Domain 2:Physical Aspects of Care• Hiccups• Nausea and vomiting• Oral Secretions-• copious or thick• Pain• Pruritis/ itching• Seizures• Skin and Wound• Malignant Wounds, Pressure
Ulcers, Pruritis, sensitivity• Sleep Disturbance/Insomnia• Stomatitis• Weakness (asthenia)• Xerostomia/Dry Mouth
•Agitation•Anorexia and Cachexia•Anxiety•Ascites/Edema•Asthenia/Lack of Energy•Constipation•Cough•Delirium
–Confusion,–Terminal Restlessness
•Depression•Diarrhea•Dry Eyes/Dry Nose•Dyspnea/ shortness of breath•Dysphagia•Fatigue•Fever
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Domain 4: Social Aspects of Care
•Family structure•Geographic location•Relationships•Lines of communication•Existing social and
cultural network•Perceived social support•Medical decision
making•Work and school settings•Finances
•Sexuality•Intimacy•Living arrangements•Caregiver availability•Access to transportation, medications•Needed equipment, nutrition•Community resources•Legal issues
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Domain 5: Spiritual, Religious and Existential Aspects of Care
•Assesses and addresses spiritual concerns Recognizes and respects religious beliefs•Provides religious support•Makes connections with community and spiritual/religious groups or individuals as desired by patient/family
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EdwardT.Hall’sCulturalIcebergModel
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ELNEC,2017
Cultural Sensitivity & Cultural Humility
•Cultural sensitivity: Being aware of your own culture, values, beliefs, traditions, and its impact on care
•Cultural humility: Admitting that you do not know about every cultural group and how this can affect patient care
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Ethical Principles•Autonomy--Patients should be informed and involved in decision making -their right to choose•Beneficence--Do Good•Non-maleficence--Do No Harm•Justice--balancing needs of an individual with those of the society/community
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Imagine
Conclusion- The Challenge• Engage: What strategies for engaging patients and
families in conversations about end-of-life care will you use?
• Steward: What activities to document and communicate each patient’s end-of-life care wishes will you execute?
• Respect: Which palliative care approaches to create a patient-centered plan nearing end-of-life will you incorporate?
• Exemplify: Which techniques to encourage staff to have end-of-life conversations with their own families will you initiate?
• Connect: How will you integrate prevalent cultural and religious practices of your community into the advance care planning processes?
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For More InformationNancy Joyner, MS, CNS-BC, APRN, ACHPN
Palliative Care Clinical Nurse SpecialistSubject Matter Expert, Center for Rural Health- Grand Forks, ND
Rural Community-Based Palliative Care [email protected]
https://ruralhealth.und.edu/projects/community-palliative-care
Sally May, BSN, RN,Senior Quality Improvement Specialist
Great Plains Quality Innovation Network- Minot, [email protected]
https://www.qualityhealthnd.org/
ReferencesAriadne Labs. Serious Illness Care Website- https://www.ariadnelabs.org/areas-of-work/serious-illness-care/
Center for Palliative Care Website-https://www.capc.org/
City of Hope Pain & Palliative Resource Center- http://prc.coh.org
Coalition for Compassion Care website and training- http://coalitionccc.org/
Dahlin, C., & Wittenberg, E. (2015) Communication in palliative care: an essential competency for nurses. In B.R. Ferrell, N. Coyle, & J. Paice (Eds.), Oxford textbook of palliative nursing, 4th edition (Chapter 5, pp. 81-109). New York, NY: Oxford University Press.
Dunn, H. (2017). Hard Choices for Loving People.6th Ed. http://hankdunn.com/purchase/hard-choices-for-loving-people/
End-of-Life Nursing Education Consortium (ELNEC) – Core. (2017). American Association of Colleges of Nursing, Washington, DC and City of Hope, Duarte, CA. www.aacnnursing.org/ELNEC
Ferris, F. (2001). Palliative Care Continuum. In EPEC (Education in Palliative and End-of-LfeEducation)-Oncology Module.
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References (cont 2 of 3)Get Palliative Care dot org website- https://getpalliativecare.org/
Gibson, S. The advanced practice registered nurse in hospice. In Advanced Practice Palliative Nursing, Dahlin, Coyne, Ferrell (eds). New York, NY: Oxford University Press. Pp170-179.
Giuca, A-M. (2017). Redefining Hope: A Medical Student’s Perspective. Palliative Care Network of Wisconsin. https://www.mypcnow.org/single-post/2017/11/03/Redefining-Hope-A-Medical-Students-Perspective
Honoring Choices ® North Dakota website - https://www.honoringchoicesnd.org/
Karnes, B. (2013). Gone From My Sight- https://bkbooks.com/
McCutcheon Adams K, Kabcenell A, Little K, Sokol-Hessner L.“Conversation Ready”: A Framework for Improving End-of-Life Care. IHI White Paper. Cambridge, Massachusetts: Institute for Healthcare Improvement; 2015. (Available at ihi.org) McHugh, M.E. & Buschman, P.R. (2016). Communication at the time of death. In C.Dahlin, P.J. Coyne, and B.R. Ferrell (Eds.), Advanced practice palliative nursing (Chapter 41, pp. 395-404). New York, NY: Oxford University Press.
Milone-Nuzzo, L, Ercolano, E. & MCorkle, R. (2015). Home care and hospice home care. In Oxford Textbook of Palliative Nursing.4th Ed. Ferrell, Coyle & Paice, (Eds). New York, NY: Oxford University Press. Pp727-739.
Mandrola, J. (2017). Four Crucial Questions to Ask Your Doctor. http://www.drjohnm.org/2017/04/four-crucial-questions-to-ask-your-doctor/
References (cont 3 of 3)NationalConsensusProject(NCP)forQualityPalliativeCare(2013). Clinicalpracticeguidelinesforqualitypalliativecare,3rd edition. Accessedfrom: http://www.nationalconsensusproject.org/Guidelines_Download2.aspx
National HealthCare Decisions Day website�-https://www.nhdd.org/
National POLST Care Continuum Toolkit website- http://polst.org/toolkit/?pro=1
Respecting Choices® website- https://respectingchoices.org/
Seccareccia,D.etal.(2015).CommunicationandQualityofCareonPalliativeCareUnits:AQualitativeStudy.JPM18(9):758-764.
Taylor,E.J.(2015).Spiritualassessment.InB.R.Ferrell,N.Coyle,&J.Paice (Eds.),Oxfordtextbookofpalliativenursing, 4th edition(Chapter32,pp.531-545).NewYork,NY:OxfordUniversityPress.
TheConversationProjectwebsite- https://theconversationproject.org/
Warm,E.&Weissman,DE.(2015).HopeandTruthTelling.FastFactsandConcepts#21.https://www.mypcnow.org/blank-fich0