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End of Life Planning Ahead

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

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End of Life Planning Ahead

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

  2. 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

  3. 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

  4. 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

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

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

  7. 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

  8. Physicians’Role • Cure and control disease and to prolong life • Relieve suffering • Educate patients and families about their choices regarding EOL care

  9. 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

  10. ExpertsEOL • Patient: Expert of his/her values, goals and preferences • Physician: Expert on medical means for honoring patient’s perspective

  11. 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

  12. 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

  13. End of Life PlanningBarriers (2) • Aversion to talking about death • Patients • Physicians • Lack of healthcare time and training

  14. 2 conversations • Advance Directives • Patient • In relatively good health • Near EOL • Patient or Surrogate • Critically Ill

  15. 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

  16. Advance Directives: Healthcare Power of AttorneySouth 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

  17. 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

  18. Planning Documents • Five Wishes • http://www.agingwithdignity.org/forms/5wishes.pdf • Values History • http://hsc.unm.edu/ethics/valueshistory.shtml

  19. 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.

  20. 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.

  21. 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.

  22. 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 T. West; The Carolinas Center for Hospice and End of Life Care

  23. 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 T. West; The Carolinas Center for Hospice and End of Life Care

  24. 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

  25. 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.

  26. 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

  27. 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

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

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

  30. 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

  31. 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

  32. Communication2 conversations • Advance Directives • Patient • In relatively good health • Near EOL • Surrogate • Critically Ill

  33. SurrogateQualifications • Willing • Needs to know patient’s preferences and values • Honor and follow plan • Ability to make difficult choices • Available

  34. How SurrogateDecisions Will be Made • Patient’s wishes • Substitute Judgment • Best Interest

  35. 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”

  36. 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

  37. Life sustaining support Decisions • Respirator (ventilator) support • Cardiopulmonary resuscitation (attempt) • Artificial Feeding • Blood pressure supporting drugs • Antibiotics • Kidney Dialysis

  38. Life sustaining support Decisions • Quality of life • Prognosis • Mental status • Overall physical status • Religious belief • Cultural belief

  39. 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 SC Coalition for the Seriously Ill

  40. 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

  41. 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. Medicare Hospice Benefit Life Prolonging Care Life Prolonging New Hospice Care Care Bereavement Palliative Care Diagnosis Death Conceptual Shift from “Curative Model” Old 42

  43. 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

  44. 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

  45. 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

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