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FacilitatingFacilitatingAdvance CareAdvance CarePlanningPlanningChristopher W Pile, MDChristopher W Pile, MDSection Chief – Palliative MedicineSection Chief – Palliative MedicineCarilion ClinicCarilion Clinic
FacilitatingFacilitatingAdvance CareAdvance CarePlanningPlanningChristopher W Pile, MDChristopher W Pile, MDSection Chief – Palliative MedicineSection Chief – Palliative MedicineCarilion ClinicCarilion Clinic
The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association andthe Robert Wood Johnson Foundation
The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association andthe Robert Wood Johnson Foundation
ObjectivesObjectives
Understand concepts of advance Understand concepts of advance directives and advance care planningdirectives and advance care planning
Review literature for advance Review literature for advance directives and advance care planningdirectives and advance care planning
Develop new approaches to facilitate Develop new approaches to facilitate effective advance care planningeffective advance care planning
Learn interventions to ensure Learn interventions to ensure advance care planning impacts careadvance care planning impacts care
Understand concepts of advance Understand concepts of advance directives and advance care planningdirectives and advance care planning
Review literature for advance Review literature for advance directives and advance care planningdirectives and advance care planning
Develop new approaches to facilitate Develop new approaches to facilitate effective advance care planningeffective advance care planning
Learn interventions to ensure Learn interventions to ensure advance care planning impacts careadvance care planning impacts care
Advance DirectivesAdvance Directives
Definition:Definition:
A plan by a capable person about future A plan by a capable person about future medical care in the event person is medical care in the event person is diagnosed with a terminal condition or diagnosed with a terminal condition or persistent vegetative state and person is persistent vegetative state and person is unable to communicate choices.unable to communicate choices.
This plan can be expressed orally or in This plan can be expressed orally or in writing.writing.
Definition:Definition:
A plan by a capable person about future A plan by a capable person about future medical care in the event person is medical care in the event person is diagnosed with a terminal condition or diagnosed with a terminal condition or persistent vegetative state and person is persistent vegetative state and person is unable to communicate choices.unable to communicate choices.
This plan can be expressed orally or in This plan can be expressed orally or in writing.writing.
Current US approachCurrent US approach
Providing information about legal Providing information about legal rights to refuse treatment and rights to refuse treatment and complete statutory documentscomplete statutory documents
Asking patients if they have advance Asking patients if they have advance directives upon admissiondirectives upon admission
Encouraging completion of Encouraging completion of documents with no instructiondocuments with no instruction
Asking simplistic questions: “If you Asking simplistic questions: “If you heart stops, should we do CPR?”heart stops, should we do CPR?”
Providing information about legal Providing information about legal rights to refuse treatment and rights to refuse treatment and complete statutory documentscomplete statutory documents
Asking patients if they have advance Asking patients if they have advance directives upon admissiondirectives upon admission
Encouraging completion of Encouraging completion of documents with no instructiondocuments with no instruction
Asking simplistic questions: “If you Asking simplistic questions: “If you heart stops, should we do CPR?”heart stops, should we do CPR?”
LimitationsLimitations
Barriers to completeBarriers to complete
Hypothetical decisions about Hypothetical decisions about uncertain futureuncertain future
Medical advancesMedical advances
Emotionally difficult time at Emotionally difficult time at implementationimplementation
Not followed by physiciansNot followed by physicians
Barriers to completeBarriers to complete
Hypothetical decisions about Hypothetical decisions about uncertain futureuncertain future
Medical advancesMedical advances
Emotionally difficult time at Emotionally difficult time at implementationimplementation
Not followed by physiciansNot followed by physicians
How have they worked?How have they worked?
The prevalence is low (20-30% in general The prevalence is low (20-30% in general pop. and < 50% for advanced illness)pop. and < 50% for advanced illness)
Often unavailable at place of treatment Often unavailable at place of treatment (25% available to treating physician)(25% available to treating physician)
Wording too genericWording too generic
Does not impact care (not available, not Does not impact care (not available, not specific, not accepted)specific, not accepted)
Wilkinson A, Wenger N, Shugarman LR. Literature Review on Advance Wilkinson A, Wenger N, Shugarman LR. Literature Review on Advance Directives, 2007.Directives, 2007.
The prevalence is low (20-30% in general The prevalence is low (20-30% in general pop. and < 50% for advanced illness)pop. and < 50% for advanced illness)
Often unavailable at place of treatment Often unavailable at place of treatment (25% available to treating physician)(25% available to treating physician)
Wording too genericWording too generic
Does not impact care (not available, not Does not impact care (not available, not specific, not accepted)specific, not accepted)
Wilkinson A, Wenger N, Shugarman LR. Literature Review on Advance Wilkinson A, Wenger N, Shugarman LR. Literature Review on Advance Directives, 2007.Directives, 2007.
Advance Care PlanningAdvance Care Planning
DefinitionDefinition
A process of planning for future medical A process of planning for future medical decisions. This process needs to meet decisions. This process needs to meet similar standards as informed consent. similar standards as informed consent. Must understand potential situations, Must understand potential situations, choices, and outcomes. Reason and choices, and outcomes. Reason and reflect. Discuss choices with those who reflect. Discuss choices with those who will implement plan. Update regularly.will implement plan. Update regularly.
DefinitionDefinition
A process of planning for future medical A process of planning for future medical decisions. This process needs to meet decisions. This process needs to meet similar standards as informed consent. similar standards as informed consent. Must understand potential situations, Must understand potential situations, choices, and outcomes. Reason and choices, and outcomes. Reason and reflect. Discuss choices with those who reflect. Discuss choices with those who will implement plan. Update regularly.will implement plan. Update regularly.
Relationship of ACP to ADRelationship of ACP to AD
Advance Directives only as good as Advance Directives only as good as Advance Care Planning processAdvance Care Planning process
If patient does not understand, If patient does not understand, reflect, and discuss choices low reflect, and discuss choices low probability it will impact careprobability it will impact care
The form must represent a quality The form must represent a quality planning processplanning process
Advance Directives only as good as Advance Directives only as good as Advance Care Planning processAdvance Care Planning process
If patient does not understand, If patient does not understand, reflect, and discuss choices low reflect, and discuss choices low probability it will impact careprobability it will impact care
The form must represent a quality The form must represent a quality planning processplanning process
Successful ACPSuccessful ACP
Plans must be createdPlans must be created
Plans must be specific enough for the Plans must be specific enough for the clinical situationclinical situation
Plans must be an accurate reflection of Plans must be an accurate reflection of the patient’s preferences, values, and the patient’s preferences, values, and goalsgoals
Plans must be availablePlans must be available
Plans must be incorporatedPlans must be incorporatedAdapted Fagerlin A, Schneider CE. Enough. The Failure of the Adapted Fagerlin A, Schneider CE. Enough. The Failure of the
Living Will. Hastings Center Report 34 no. 2 (2004): 30-42Living Will. Hastings Center Report 34 no. 2 (2004): 30-42
Plans must be createdPlans must be created
Plans must be specific enough for the Plans must be specific enough for the clinical situationclinical situation
Plans must be an accurate reflection of Plans must be an accurate reflection of the patient’s preferences, values, and the patient’s preferences, values, and goalsgoals
Plans must be availablePlans must be available
Plans must be incorporatedPlans must be incorporatedAdapted Fagerlin A, Schneider CE. Enough. The Failure of the Adapted Fagerlin A, Schneider CE. Enough. The Failure of the
Living Will. Hastings Center Report 34 no. 2 (2004): 30-42Living Will. Hastings Center Report 34 no. 2 (2004): 30-42
ACP StagesACP Stages
Attempting to plan for ALL possibilities in Attempting to plan for ALL possibilities in a single document is impossible and a single document is impossible and unnecessaryunnecessary
3 stages3 stages
1) Basic planning for all healthy adults1) Basic planning for all healthy adults
2) Chronic disease where complications are 2) Chronic disease where complications are predictablepredictable
3) End stage disease where it would not be 3) End stage disease where it would not be surprising if the patient died in the next 12 surprising if the patient died in the next 12 monthsmonths
Attempting to plan for ALL possibilities in Attempting to plan for ALL possibilities in a single document is impossible and a single document is impossible and unnecessaryunnecessary
3 stages3 stages
1) Basic planning for all healthy adults1) Basic planning for all healthy adults
2) Chronic disease where complications are 2) Chronic disease where complications are predictablepredictable
3) End stage disease where it would not be 3) End stage disease where it would not be surprising if the patient died in the next 12 surprising if the patient died in the next 12 monthsmonths
Evidence Based OutcomesEvidence Based Outcomes
End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.
Wright et al, Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Care Giver Bereavement Adjustment. JAMA 2008:300(14) 1665-1673
End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.
Wright et al, Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Care Giver Bereavement Adjustment. JAMA 2008:300(14) 1665-1673
Evidence Based OutcomesEvidence Based Outcomes
Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness.
Wright et al, Place of Death: Correlations With Quality of Life of Wright et al, Place of Death: Correlations With Quality of Life of Patients with Cancer and Predictors of Bereaved Caregivers’ Patients with Cancer and Predictors of Bereaved Caregivers’ Mental Health. JCO 2010 (28) 4457-4464.Mental Health. JCO 2010 (28) 4457-4464.
Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness.
Wright et al, Place of Death: Correlations With Quality of Life of Wright et al, Place of Death: Correlations With Quality of Life of Patients with Cancer and Predictors of Bereaved Caregivers’ Patients with Cancer and Predictors of Bereaved Caregivers’ Mental Health. JCO 2010 (28) 4457-4464.Mental Health. JCO 2010 (28) 4457-4464.
Evidence Based OutcomesEvidence Based Outcomes
Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
Teno et al, Family Perspectives on End-of-Life Care at the Last Place Teno et al, Family Perspectives on End-of-Life Care at the Last Place of Care. JAMA 2004: 291(1):88-93of Care. JAMA 2004: 291(1):88-93
Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
Teno et al, Family Perspectives on End-of-Life Care at the Last Place Teno et al, Family Perspectives on End-of-Life Care at the Last Place of Care. JAMA 2004: 291(1):88-93of Care. JAMA 2004: 291(1):88-93
Barriers to Successful ACPBarriers to Successful ACP
Emotionally Laden DiscussionEmotionally Laden Discussion
Time ConsumingTime Consuming
Care Setting Transitions Care Setting Transitions
Medical AdvancesMedical Advances
Emotionally Laden DiscussionEmotionally Laden Discussion
Time ConsumingTime Consuming
Care Setting Transitions Care Setting Transitions
Medical AdvancesMedical Advances
Moral ImperativeMoral Imperative
“I didn’t expect him to die so soon. I got the feeling the doctors weren’t entirely honest with us about his condition. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back.”
Heyland et al, Open Med. 2009 Jun 16;3(2):e101-10.Heyland et al, Open Med. 2009 Jun 16;3(2):e101-10.
“I didn’t expect him to die so soon. I got the feeling the doctors weren’t entirely honest with us about his condition. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back.”
Heyland et al, Open Med. 2009 Jun 16;3(2):e101-10.Heyland et al, Open Med. 2009 Jun 16;3(2):e101-10.
ACP SystemACP System
Communication TrainingCommunication Training
Goals of Care DiscussionGoals of Care Discussion
Advance Directive DocumentsAdvance Directive Documents
POLST ParadigmPOLST Paradigm
www.ohsu.edu/polst
Medical AdvocatesMedical Advocates
Community CollaborationCommunity Collaboration
Communication TrainingCommunication Training
Goals of Care DiscussionGoals of Care Discussion
Advance Directive DocumentsAdvance Directive Documents
POLST ParadigmPOLST Paradigm
www.ohsu.edu/polst
Medical AdvocatesMedical Advocates
Community CollaborationCommunity Collaboration
7-step protocol to negotiate goals of care7-step protocol to negotiate goals of care1.1. Create the right setting Create the right setting
2.2. Determine what the patient and family know Determine what the patient and family know
3.3. Ask what they want to know Ask what they want to know
4. 4. Explore expectations and hopes keeping in mindExplore expectations and hopes keeping in mind realistic goalsrealistic goals
5.5. Respond empathically Respond empathically
6.6. Make a plan including follow-up Make a plan including follow-up
Caring Connections www.caringinfo.orgCaring Connections www.caringinfo.org
7.7. Review and revise periodically Review and revise periodically
1.1. Create the right setting Create the right setting
2.2. Determine what the patient and family know Determine what the patient and family know
3.3. Ask what they want to know Ask what they want to know
4. 4. Explore expectations and hopes keeping in mindExplore expectations and hopes keeping in mind realistic goalsrealistic goals
5.5. Respond empathically Respond empathically
6.6. Make a plan including follow-up Make a plan including follow-up
Caring Connections www.caringinfo.orgCaring Connections www.caringinfo.org
7.7. Review and revise periodically Review and revise periodically
Truth and HopeTruth and Hope
““Don’t take away the patient’s hope.”Don’t take away the patient’s hope.”
Research consistently shows >90% of patients Research consistently shows >90% of patients want to know the reality of their medical conditionwant to know the reality of their medical condition
Suffering can not be completely avoidedSuffering can not be completely avoided
False HopeFalse Hope
Hospice/Palliative Care can provide quantity as Hospice/Palliative Care can provide quantity as well as quality of lifewell as quality of life
Pyenson et al, Medicare Costs in Matched Hospice and Non-Pyenson et al, Medicare Costs in Matched Hospice and Non-Hospice Cohorts, JPSM 28(3) 200-210.Hospice Cohorts, JPSM 28(3) 200-210.
Temel et al, Early Palliative Care for Patients with Metastatic Temel et al, Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, NEJM 363(8) 733-742.Non-Small-Cell Lung Cancer, NEJM 363(8) 733-742.
Redefined Hope = TranscendenceRedefined Hope = Transcendence
““Don’t take away the patient’s hope.”Don’t take away the patient’s hope.”
Research consistently shows >90% of patients Research consistently shows >90% of patients want to know the reality of their medical conditionwant to know the reality of their medical condition
Suffering can not be completely avoidedSuffering can not be completely avoided
False HopeFalse Hope
Hospice/Palliative Care can provide quantity as Hospice/Palliative Care can provide quantity as well as quality of lifewell as quality of life
Pyenson et al, Medicare Costs in Matched Hospice and Non-Pyenson et al, Medicare Costs in Matched Hospice and Non-Hospice Cohorts, JPSM 28(3) 200-210.Hospice Cohorts, JPSM 28(3) 200-210.
Temel et al, Early Palliative Care for Patients with Metastatic Temel et al, Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, NEJM 363(8) 733-742.Non-Small-Cell Lung Cancer, NEJM 363(8) 733-742.
Redefined Hope = TranscendenceRedefined Hope = Transcendence
Language with unintended consequencesLanguage with unintended consequences There is nothing more we can do.There is nothing more we can do.
Do you want us to do everything Do you want us to do everything possible?possible?
Will you agree to discontinue care?Will you agree to discontinue care?
It’s time we talk about pulling back.It’s time we talk about pulling back.
I think we should stop aggressive I think we should stop aggressive therapy.therapy.
There is nothing more we can do.There is nothing more we can do.
Do you want us to do everything Do you want us to do everything possible?possible?
Will you agree to discontinue care?Will you agree to discontinue care?
It’s time we talk about pulling back.It’s time we talk about pulling back.
I think we should stop aggressive I think we should stop aggressive therapy.therapy.
Language to describethe goals of care . . .Language to describethe goals of care . . . I want to give the best care possible until I want to give the best care possible until
the day you diethe day you die
We want to help you live meaningfully in We want to help you live meaningfully in the time that you havethe time that you have
I’ll do everything I can to help you I’ll do everything I can to help you maintain your independencemaintain your independence
I want to ensure that your father receives I want to ensure that your father receives the kind of treatment he wantsthe kind of treatment he wants
I want to give the best care possible until I want to give the best care possible until the day you diethe day you die
We want to help you live meaningfully in We want to help you live meaningfully in the time that you havethe time that you have
I’ll do everything I can to help you I’ll do everything I can to help you maintain your independencemaintain your independence
I want to ensure that your father receives I want to ensure that your father receives the kind of treatment he wantsthe kind of treatment he wants
. . . Language to describethe goals of care. . . Language to describethe goals of care I will focus my efforts on treating I will focus my efforts on treating
your symptomsyour symptoms
Let’s discuss what we can do to Let’s discuss what we can do to fulfill your wish to stay at homefulfill your wish to stay at home
We will continue to care for you and We will continue to care for you and help you meet your goalshelp you meet your goals
I will focus my efforts on treating I will focus my efforts on treating your symptomsyour symptoms
Let’s discuss what we can do to Let’s discuss what we can do to fulfill your wish to stay at homefulfill your wish to stay at home
We will continue to care for you and We will continue to care for you and help you meet your goalshelp you meet your goals
Implementing ADImplementing AD
Choose medical POA wiselyChoose medical POA wisely It is about the relationship not the It is about the relationship not the
documentdocument Open ongoing communicationOpen ongoing communication Expect increased emotionsExpect increased emotions Find medical advocateFind medical advocate
PhysicianPhysicianHospiceHospicePalliative CarePalliative CareEthics CommitteesEthics Committees
Choose medical POA wiselyChoose medical POA wisely It is about the relationship not the It is about the relationship not the
documentdocument Open ongoing communicationOpen ongoing communication Expect increased emotionsExpect increased emotions Find medical advocateFind medical advocate
PhysicianPhysicianHospiceHospicePalliative CarePalliative CareEthics CommitteesEthics Committees
ConclusionConclusion
Current approach to AD’s have failedCurrent approach to AD’s have failed
Providers not trained to facilitate ACP or Providers not trained to facilitate ACP or implement AD in medical decision makingimplement AD in medical decision making
Examples of successful community Examples of successful community developed ACP systems existdeveloped ACP systems exist
Our patients and families are counting on Our patients and families are counting on usus
In your world, if you don’t change things, who In your world, if you don’t change things, who will?will?
Current approach to AD’s have failedCurrent approach to AD’s have failed
Providers not trained to facilitate ACP or Providers not trained to facilitate ACP or implement AD in medical decision makingimplement AD in medical decision making
Examples of successful community Examples of successful community developed ACP systems existdeveloped ACP systems exist
Our patients and families are counting on Our patients and families are counting on usus
In your world, if you don’t change things, who In your world, if you don’t change things, who will?will?
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