end of life planning ahead
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End of Life Planning Ahead. Rotary International North Charleston October 22, 2012 Sewell I. Kahn, MD FACP. End of Life Planning Objectives. Define Death Discuss the choices that one has in end of life (EOL) planning Explore the role of patients and family - PowerPoint PPT PresentationTRANSCRIPT
End of LifePlanning Ahead
End of LifePlanning Ahead
Rotary International
North Charleston
October 22, 2012
Sewell I. Kahn, MD FACP
Rotary International
North Charleston
October 22, 2012
Sewell I. Kahn, MD FACP
End of Life PlanningObjectives
End of Life PlanningObjectives
Define Death Discuss the choices that one has in end of
life (EOL) planning Explore the role of patients and family Review SC advance directives and EOL
planning discussions Introduce the role of palliative and hospice
care
Define Death Discuss the choices that one has in end of
life (EOL) planning Explore the role of patients and family Review SC advance directives and EOL
planning discussions Introduce the role of palliative and hospice
care
Uniform Determination of DeathUniform Determination of Death
Act established by three organizations; identified criterion for death Irreversible cessation of all circulatory and
respiratory functions Irreversible cessation of all functions of entire
brain, brain stem
Act established by three organizations; identified criterion for death Irreversible cessation of all circulatory and
respiratory functions Irreversible cessation of all functions of entire
brain, brain stem
Inevitability of DeathInevitability of Death
“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is a destination we all share. No one has ever escaped it. And thus is as it should be, because death is very likely the single best invention of life. It is life’s change agent.”
“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is a destination we all share. No one has ever escaped it. And thus is as it should be, because death is very likely the single best invention of life. It is life’s change agent.”
Steve Jobs:Stanford Commencement address 2005
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1900 1980
%Deaths Infx%Deaths Chronic
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1900 1980
%Deaths Infx%Deaths Chronic
Percent of total US deaths from Percent of total US deaths from Infectious vs. chronic diseaseInfectious vs. chronic disease
Percent of total US deaths from Percent of total US deaths from Infectious vs. chronic diseaseInfectious vs. chronic disease
Modified fromS. Rehman, MD
Cancer vs. Non-Cancer IllnessTrajectories to Death
Cancer vs. Non-Cancer IllnessTrajectories to Death
Hea
lth S
tatu
s
Time
Crises
Death
Decline
Field & Cassel, 1997Field & Cassel, 1997
Cancer
End-organ disease
30 MONTHS
Medical AdvancesMedical Advances
Antibiotics Chronic Illness Drugs (Heart, Diabetes, Cancer,
Hypertension and More) Kidney Dialysis Organ Transplantation Cardiac Resuscitation and Support Respirators Artificial Feeding and Hydration
Antibiotics Chronic Illness Drugs (Heart, Diabetes, Cancer,
Hypertension and More) Kidney Dialysis Organ Transplantation Cardiac Resuscitation and Support Respirators Artificial Feeding and Hydration
Physicians’Role
Physicians’Role
Cure and control disease and to prolong life
Relieve suffering
Educate patients and families about their choices regarding EOL care
Cure and control disease and to prolong life
Relieve suffering
Educate patients and families about their choices regarding EOL care
EOL ConcernsEOL Concerns
Too much care - using technology when it may not be in patients’ best interest
Too little care - not using technology when it is in the best interest of the patients
Too much care - using technology when it may not be in patients’ best interest
Too little care - not using technology when it is in the best interest of the patients
ExpertsEOL
ExpertsEOL
Patient: Expert of his/her values, goals and preferences
Physician: Expert on medical means for honoring patient’s perspective
Patient: Expert of his/her values, goals and preferences
Physician: Expert on medical means for honoring patient’s perspective
Advance DirectivesAdvance Directives
A legal document either telling how you want to be treated or who will make medical decisions for you if you do not have the capacity to tell them yourself.
Surrogate, healthcare agent or healthcare proxy
A legal document either telling how you want to be treated or who will make medical decisions for you if you do not have the capacity to tell them yourself.
Surrogate, healthcare agent or healthcare proxy
End of Life PlanningBarriers (1)
End of Life PlanningBarriers (1)
Planning too late 40-96% lack capacity to make decisions Illness, stress, medications may hamper thinking
processes Unexpected illness and accidents
Low rates of advance directive completion 15-30% No discussion Not available
Planning too late 40-96% lack capacity to make decisions Illness, stress, medications may hamper thinking
processes Unexpected illness and accidents
Low rates of advance directive completion 15-30% No discussion Not available
End of Life PlanningBarriers (2)
End of Life PlanningBarriers (2)
Aversion to talking about death Patients Physicians
Lack of healthcare time and training
Aversion to talking about death Patients Physicians
Lack of healthcare time and training
2 conversations2 conversations
Advance Directives Patient In relatively good health
Near EOL Patient or Surrogate Critically Ill
Advance Directives Patient In relatively good health
Near EOL Patient or Surrogate Critically Ill
Advance Directives: Living WillSouth Carolina
Advance Directives: Living WillSouth Carolina
Specific situations Permanently unconscious Terminally ill
Specific patient’s instructions Life sustaining treatment Artificial feeding and hydration
Provision to designate a person to: Enforce Revoke
Specific situations Permanently unconscious Terminally ill
Specific patient’s instructions Life sustaining treatment Artificial feeding and hydration
Provision to designate a person to: Enforce Revoke
Advance Directives: Healthcare Power of Attorney
South Carolina
Advance Directives: Healthcare Power of Attorney
South Carolina
Has the power to make all healthcare decisions for you if you cannot make them for yourself All treatment and diagnostic procedures Life sustaining treatment Hydration and nutrition Admission and discharge decisions Other
Has the power to make all healthcare decisions for you if you cannot make them for yourself All treatment and diagnostic procedures Life sustaining treatment Hydration and nutrition Admission and discharge decisions Other
Healthcare Power of Attorney Healthcare Power of Attorney
The surrogate needs to know the patient’s values
If there is both a living will and healthcare power of attorney, the living will instruction must be followed
The surrogate needs to know the patient’s values
If there is both a living will and healthcare power of attorney, the living will instruction must be followed
Planning DocumentsPlanning Documents
Five Wishes http://www.agingwithdignity.org/forms/
5wishes.pdf Values History
http://hsc.unm.edu/ethics/valueshistory.shtml
Five Wishes http://www.agingwithdignity.org/forms/
5wishes.pdf Values History
http://hsc.unm.edu/ethics/valueshistory.shtml
Five WishesGeneral
Five WishesGeneral
Close to death Coma and not expected to wake up Permanent and severe brain damage and not
expected to recover In each of these situations:
Want to have life-support treatments Do not want life-support treatments Want to have life-support treatments if the doctor believes
it could help, but stop if it is not helping.
Close to death Coma and not expected to wake up Permanent and severe brain damage and not
expected to recover In each of these situations:
Want to have life-support treatments Do not want life-support treatments Want to have life-support treatments if the doctor believes
it could help, but stop if it is not helping.
Five Wishes (1)Five Wishes (1)
Wish 1: The person that I want to make healthcare
decisions for me when I cannot make them myself.
Wish 2: My wish for the kinds of care I want or
don’t want.
Wish 1: The person that I want to make healthcare
decisions for me when I cannot make them myself.
Wish 2: My wish for the kinds of care I want or
don’t want.
Five Wishes (2)Five Wishes (2)
Wish 3:
My wish for how comfortable I want to be Wish 4:
My wish for how I want people to treat me. Wish 5:
My wish for what I want my loved ones to know.
Wish 3:
My wish for how comfortable I want to be Wish 4:
My wish for how I want people to treat me. Wish 5:
My wish for what I want my loved ones to know.
Advance Care Planning(1)Advance Care Planning(1)In Statewide Surveys over multiple years:
Approx.14%-29% have completed an advance directive form
Approximately 5% have no document but have had conversations with family or health care provider
Approx. 60% Have done nothing
In Statewide Surveys over multiple years:
Approx.14%-29% have completed an advance directive form
Approximately 5% have no document but have had conversations with family or health care provider
Approx. 60% Have done nothing
T. West; The Carolinas Center for Hospice and End of Life Care
Advance Care Planning (2)Advance Care Planning (2)
Less than 5% thought discussions should happen at a medical crisis
Approx. 40% believe they need more info to make decisions
Numbers were grossly unchanged from year to year
Less than 5% thought discussions should happen at a medical crisis
Approx. 40% believe they need more info to make decisions
Numbers were grossly unchanged from year to year
T. West; The Carolinas Center for Hospice and End of Life Care
Advance Directives General Comments (1)
Advance Directives General Comments (1)
The advance directive is only valid if you do not have capacity to make decisions
The advance directive should be available when needed. Copies: Personal medical record Surrogate Lawyer Personal physician Minister Accompany patient to healthcare facility
The advance directive is only valid if you do not have capacity to make decisions
The advance directive should be available when needed. Copies: Personal medical record Surrogate Lawyer Personal physician Minister Accompany patient to healthcare facility
Advance Directives General Comments (2)
Advance Directives General Comments (2)
It is NOT the HC power of attorney document that speaks for you, but the person you appoint. Discuss your needs, values and desires with that person.
You may change or revoke all advance directives.
If you have both a HC power of attorney and a Living will, The surrogate CANNOT change the Living will unless you have given power to revoke.
It is NOT the HC power of attorney document that speaks for you, but the person you appoint. Discuss your needs, values and desires with that person.
You may change or revoke all advance directives.
If you have both a HC power of attorney and a Living will, The surrogate CANNOT change the Living will unless you have given power to revoke.
Advance Directives General Comments (3)
Advance Directives General Comments (3)
SC Law: If you do not specify in your living will that you do not want food/ water you WILL receive it.
Advance directives are not perfect Advance directives are not doctors’ orders Only apply when in a healthcare facility Not portable
SC Law: If you do not specify in your living will that you do not want food/ water you WILL receive it.
Advance directives are not perfect Advance directives are not doctors’ orders Only apply when in a healthcare facility Not portable
Advance Directives Portable
Advance Directives Portable
South Carolina EMS Do Not Resuscitate Form Only for patients in poor health and unlikely to
benefit from resuscitation Only a physician can obtain form for you
POLST Being developed in SC as POST Doctor’s order
South Carolina EMS Do Not Resuscitate Form Only for patients in poor health and unlikely to
benefit from resuscitation Only a physician can obtain form for you
POLST Being developed in SC as POST Doctor’s order
Developing ProgramsDeveloping Programs
National POLST Paradigm Programs
Endorsed ProgramsEndorsed Programs
No Program (Contacts)No Program (Contacts)*As of February 2012
When is POLST Appropriate?
When is POLST Appropriate?
Terminal illness Advanced disease Prognoses is death
within a year Debilitating chronic
progressive illness
Terminal illness Advanced disease Prognoses is death
within a year Debilitating chronic
progressive illness
No Advance DirectiveSC Law (1)
No Advance DirectiveSC Law (1)
1. Court Appointed Guardian
2. Attorney in fact
3. A person given priority to make health care
decisions by another statutory provision
4. Spouse
5. Parent or adult child
1. Court Appointed Guardian
2. Attorney in fact
3. A person given priority to make health care
decisions by another statutory provision
4. Spouse
5. Parent or adult child
No Advance DirectiveSC Law (2)
No Advance DirectiveSC Law (2)
6. Adult Sibling, Grandparent or adult Grandchild
7. Any other relative by blood or marriage that the Health Care provider believes has a close personal relationship to the patient
8. A person given authority to make health care decisions by another statutory provision
In situations of emergency or if there is no one to consent in certain situations the patient will be treated
6. Adult Sibling, Grandparent or adult Grandchild
7. Any other relative by blood or marriage that the Health Care provider believes has a close personal relationship to the patient
8. A person given authority to make health care decisions by another statutory provision
In situations of emergency or if there is no one to consent in certain situations the patient will be treated
Communication2 conversationsCommunication2 conversations
Advance Directives Patient In relatively good health
Near EOL Surrogate Critically Ill
Advance Directives Patient In relatively good health
Near EOL Surrogate Critically Ill
SurrogateQualifications
SurrogateQualifications
Willing Needs to know patient’s preferences and
values Honor and follow plan Ability to make difficult choices Available
Willing Needs to know patient’s preferences and
values Honor and follow plan Ability to make difficult choices Available
How SurrogateDecisions Will be Made
How SurrogateDecisions Will be Made
Patient’s wishes Substitute Judgment Best Interest
Patient’s wishes Substitute Judgment Best Interest
Impact on SurrogatesImpact on Surrogates
1/3 have a negative emotional burden Much less negative if patient’s wishes are
known:
“Thank God Mom and Dad had a living will. I am glad I was not the person making the decision”
1/3 have a negative emotional burden Much less negative if patient’s wishes are
known:
“Thank God Mom and Dad had a living will. I am glad I was not the person making the decision”
End of LifeCommunication
End of LifeCommunication
Process; Not one time discussion: Understanding of the disease and the
prognosis Concerns about the future How they want to spend their time if limited What trade offs
Process; Not one time discussion: Understanding of the disease and the
prognosis Concerns about the future How they want to spend their time if limited What trade offs
Life sustaining support Decisions
Life sustaining support Decisions
Respirator (ventilator) support Cardiopulmonary resuscitation (attempt) Artificial Feeding Blood pressure supporting drugs Antibiotics Kidney Dialysis
Respirator (ventilator) support Cardiopulmonary resuscitation (attempt) Artificial Feeding Blood pressure supporting drugs Antibiotics Kidney Dialysis
Life sustaining support Decisions
Life sustaining support Decisions
Quality of life Prognosis Mental status Overall physical status Religious belief Cultural belief
Quality of life Prognosis Mental status Overall physical status Religious belief Cultural belief
Communication Review of Systems (C-ROS)
Communication Review of Systems (C-ROS)
1. Ability to Consent
2. Patient Voice
3. Physician Voice
4. Patient Understanding
5. Physician Understanding
6. Advance Directives
7. Decisions
1. Ability to Consent
2. Patient Voice
3. Physician Voice
4. Patient Understanding
5. Physician Understanding
6. Advance Directives
7. Decisions SC Coalition for the Seriously Ill
Palliative CarePalliative Care
Palliative care is comprehensive, interdisciplinary care designed to promote quality of life by meeting the physical, social and spiritual needs of patients living with a serious or incurable illness.
Palliative care is comprehensive, interdisciplinary care designed to promote quality of life by meeting the physical, social and spiritual needs of patients living with a serious or incurable illness.
Hanson; NC Med J 2004;65:202
HospiceHospice
Hospice is a system of care that provides palliative care and emotional support for patients who are in an end of life situation usually in a home or non-hospital setting. There are inpatient Hospice Care programs for patients who do not have adequate in home support.
Hospice is a system of care that provides palliative care and emotional support for patients who are in an end of life situation usually in a home or non-hospital setting. There are inpatient Hospice Care programs for patients who do not have adequate in home support.
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Conceptual Shift from “Curative Model”
Medicare Medicare Hospice Hospice BenefitBenefit
Life Prolonging CareLife Prolonging Care OldOld
Palliative CarePalliative Care
Bereavement
Hospice CareHospice CareLife ProlongingLife Prolonging
CareCareNewNew
Diagnosis Death
ConclusionConclusion
End of life planning is not something that should be left to chance.
Physicians, patients and families need to take an active role in planning for the inevitable
Curative treatment, control of chronic illness and relief of suffering are All important functions of modern health care
End of life planning is not something that should be left to chance.
Physicians, patients and families need to take an active role in planning for the inevitable
Curative treatment, control of chronic illness and relief of suffering are All important functions of modern health care
SC Coalition for the Care of the Seriously Ill (CSI)
Charter Members
SC Coalition for the Care of the Seriously Ill (CSI)
Charter Members
South Carolina Medical Association South Carolina Hospital Association South Carolina Nurses Association Carolinas Center for Hospice and End of Life Care South Carolina Healthcare Ethics Network South Carolina Society of Chaplains LifePoint AARP
South Carolina Medical Association South Carolina Hospital Association South Carolina Nurses Association Carolinas Center for Hospice and End of Life Care South Carolina Healthcare Ethics Network South Carolina Society of Chaplains LifePoint AARP
SC Coalition for the Care of the Seriously Ill (CSI)
Other Participants
SC Coalition for the Care of the Seriously Ill (CSI)
Other Participants South Carolina Bar Lt. Governor’s Office on Aging EMS SC Healthcare Association Leading Age SC SC Citizens Concerned for Life SC DHEC Various volunteers with expertise in specific areas such
as law,social work and legislation
South Carolina Bar Lt. Governor’s Office on Aging EMS SC Healthcare Association Leading Age SC SC Citizens Concerned for Life SC DHEC Various volunteers with expertise in specific areas such
as law,social work and legislation