End of Life Planning 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 Planning Objectives 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 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 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.” Steve Jobs:Stanford Commencement address 2005

Percent of total US deaths from Infectious vs. chronic disease Modified from S. Rehman, MD

Cancer vs. Non-Cancer Illness Trajectories to Death Cancer vs. Non-Cancer Illness Trajectories to Death Health Status Time Crises Death Decline Field & Cassel, 1997 Cancer End-organ disease 30 MONTHS

Medical 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 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 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

Experts EOL 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 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 Planning Barriers (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 Planning Barriers (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 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 Will South 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 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 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 Documents Five Wishes Values History Five Wishes Values History

Five Wishes General 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) 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) 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) 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) 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

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) 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 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 Programs National POLST Paradigm Programs Endorsed Programs No Program (Contacts) *As of February 2012

When is POLST Appropriate? Terminal illness Advanced disease Prognoses is death within a year Debilitating chronic progressive illness

No Advance Directive SC 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 Directive SC 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

Communication 2 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

Surrogate Qualifications 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 Surrogate Decisions Will be Made Patient’s wishes Substitute Judgment Best Interest Patient’s wishes Substitute Judgment Best Interest

Impact 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 Life Communication 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

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) 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 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. Hanson; NC Med J 2004;65:202

Hospice 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.

42 Conceptual Shift from “Curative Model” Medicare Hospice Benefit Life Prolonging Care Old Palliative Care Bereavement Hospice Care Life Prolonging Care New DiagnosisDeath

Conclusion 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 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 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