End of Life Planning Ahead Rotary International North Charleston October 22, 2012 Sewell I. Kahn, MD FACP Rotary International North Charleston October

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)


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



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


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




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)


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



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.



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)


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



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


Near EOL Surrogate Critically Ill


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


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



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


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


Other Participants


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