3/7/2014 END-OF-LIFE CONVERSATIONS: � I have nothing to disclose HAVING THE TALK Meg McClaskey Clinical Medical Ethicist Board Certified Chaplain, M.Div. DISCLOSURES March 7, 2014 2 Diverse Perspectives Ethics Consultation SPECIAL THANKS 3 4 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 1
3/7/2014 MM1 � Rapid advances in technology � Incentives to use new knowledge � Beliefs we can forestall death � Belief that because we have it available we should “I didn’t know I had a choice!” use it � Your doctor at the hospital is not your primary care physician � Forgotten death as a sacred moment CLARITA’S STORY MEDICALIZATION OF DEATH 5 6 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation � New incentives � Limit length of stay � Readmissions WHO WILL DECIDE? � Home Care � Hospice COST OF HEALTHCARE 7 8 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 2
3/7/2014 � Little or no data available � Living wills (with little legal grounding) � Very little written about end-of-life issues � Patient Self Determination Act 1990 for this population � 20 Years later, only 15% have completed � There are some wonderful resources � Little new data available HISTORY OF ADVANCE CARE PREVALENCE AMONG PERSONS WITH PLANNING DEVELOPMENTAL DISABILITIES 9 10 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation News Papers Television/ Movies � Ken Murray’s” How Doctors Die” � Diane Sawyer � The New York Times EVERYONE IS TALKING ABOUT IT � The View � Amour � George Clooney’s “Descendants” News Papers � TED X Stanford with Tom Brokaw Movies and Television Social Media (“everything’s a twitter”) WHAT IS IN THE NEWS 11 12 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 3
3/7/2014 NEW ORGANIZATIONS SOCIAL MEDIA 13 14 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 15 16 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 4
3/7/2014 � Life expectancy of individuals with Developmental Disabilities is Under-treatment Over-treatment within 5 years of the general population � Significant numbers are in someway dependent � Perceptions about quality of life � Fear we will be accused of discrimination � ADLs � Lack of knowledge about person � Basic communication � Family and care giver guilt � Family unavailable or uninvolved � Medical knowledge is still often held by individual’s pediatrician � Family become decision makers � Confusing regulations � “Futile – death delaying” may be normal life sustaining � Know little about the person � Feed tubes – ventilators � Old assumptions about perception of pain (from Last Passages Project) PERSONS WITH DEVELOPMENTAL BARRIERS FOR CONVERSATION DISABILITIES AND QUALITY END-OF-LIFE CARE 17 18 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation � Individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of ability of such individuals to participate in, and contribute to, society. � ADA of 1990, 43 U.S.C. § 12101(a)(7). CAN IT BE THAT WITHIN HEALTHCARE WHAT IS THE VALUE SO LITTLE HAS CHANGED 19 20 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 5
3/7/2014 � The Special Hope Project: THINKING AHEAD Barriers Need To Use � Determined that “a Trusted Helper” should be used help � Beliefs that persons with � IPC have the conversation and complete the form Developmental Disabilities � Self Advocacy � “A Trusted Helper” should be a close friend � Do not understand death � Communication, understanding � Is this realistic? � Should be protected from even come in various ways and forms attending funerals � Counselors are willing and able to do IPCs � We must take the time � Lack of understanding of complex � Those usually do not include this most important medical issues conversation � Non Verbal = can’t communicate WE DO KNOW THAT PEOPLE ARE NOT COMMUNICATION ABOUT COMFORTABLE HAVING THESE END-OF-LIFE CONVERSATIONS 21 22 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation � Who would make your decisions if you were unable? � Use every opportunity � Is this who you want to make your decisions? � Personal experiences � Does the person you want to make your decision � News Stories know that? � Movies � Have you told that person what your preferences are � Death is part of life: Conversations about it about treatment during serious illness and/or the end need not be “morbid” of your life? WE NEED TO HAVE THE NORMALIZE THE CONVERSATION CONVERSATION 23 24 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 6
3/7/2014 � Complete Advance Directives � Document our choice of decision makers and alternates � Medical Language is complex � Document our wishes about end of life care � Get witnesses (Attorney or notary not needed) � Clarify what words mean � Give copies to � Intubation, Ventilator, CPR, Asystole, Life � Your chosen decision maker support � Your doctor � Your care providers WE NEED TO DOCUMENT OUR CLARIFY MEANINGS CONVERSATIONS 25 26 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation � The physician treating may not know you at all � Emergency Room MDs, Hospitalists, Intensivists, Hospice MDs) � We Must � Increase their awareness of the very individual special needs of persons with developmental disabilities � Increase their awareness of disparities in treatment � Emphasize and develop a sense of cultural humility and an attitude of openness and respect for person’s with Developmental Disabilities (Community Partnerships for Older Adults) “ATTENTION MUST BE PAID” UP TO YOU (DEATH OF A SALESMAN – ARTHUR MILLER) 27 28 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 7
3/7/2014 � We need to: � Have the conversation for ourselves � Respect the opinions, voices and requests of all people � use any opportunity to open up the conversation � Document the conversation WE REALLY NEED TO DO THIS! DUST TO DUST 29 30 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation Meg McClaskey TALK ABOUT IT Clinical Medical Ethicist AND Board Certified Chaplain, M.Div. Diverse Perspectives Ethics Consultation PUT IT IN WRITING! meg@diverseperspectives.com THANK YOU! 31 32 Diverse Perspectives Ethics Consultation Diverse Perspectives Ethics Consultation 8
Diverse Perspectives Ethics Consultation Advance Care Planning Resources How Doctors Die, by Ken Murray http://www.saturdayeveningpost.com/2013/03/06/in ‐ the ‐ magazine/health ‐ in ‐ the ‐ magazine/how ‐ doctors ‐ die.html San Jose Mercury News – Lisa Krieger’s Cost ‐ of ‐ Dying series http://www.mercurynews.com/cost ‐ of ‐ dying U.S. Department of Health and Human Services Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities http://aspe.hhs.gov/daltcp/reports/2007/adacp.htm Twin Cities Public Television Minnesota’s “Honoring Choices” (Video re Advance Care Planning) http://www.honoringchoices.org/videostories/#!developmental%20disabilities Person Centered Planning and Communication of End ‐ of ‐ Life Wishes with People with Developmental Disabilities Leigh Ann Kingsbury, MPA, Gerontologist Journal of Religion, Disability and Health, May 2007 http://learningcommunity.us/documents/pcp.eol.journal.pdf CDC Advance Care Planning ‐‐ Selected Resources for the Public (extensive resource list) http://www.cdc.gov/aging/pdf/acp ‐ resources ‐ public.pdf California Developmental Services Thinking Ahead, My Way, My Choice, My Life at the End (Booklet and Videos) http://www.dds.ca.gov/ConsumerCorner/ThinkingAhead.cfm Caring Community (Advance Care Planning materials) http://www.caringcommunity.org/advanced ‐ care ‐ planning/advance ‐ directives/advance ‐ health ‐ care ‐ directive ‐ english ‐ and ‐ spanish/ TED x Stanford, Wills and Advance Directives – You Tube Tom Brokaw and his daughter Jennifer discuss Advance Care Planning http://www.youtube.com/watch?v=OCFwlysc56c
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