Your Right to Self-Determination
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1 End-of-Life Planning & Communication Your Right to Self-Determination Amy Tucci, President & CEO, Hospice Foundation of America Mark Starford, Executive Director, Board Resource Center
2 Hospice Foundation of America Amy Tucci 501 c-3, founded in 1982 Information for the public Professional education for clinicians leadership in the development and application of hospice and its philosophy of care
3 Making Complex Ideas Simple Board Resource Center Mark Starford Accessible training and tools Community advocacy Create plain language media Inclusion I Equal Rights I Leadership
4 I want to have a voice in deciding what the last few weeks of my life will be like. I want my wishes to be honored. Self-Determination at the End-of-Life
5 Learn About education planning communication recommendations
6 Population Change 65 years + Number of Persons 1900 to 2060 (millions) Profile of Older Americans, Administration on Aging Administration for Community Living U.S. Census Bureau, National Center for Health Statistics, Bureau of Labor Statistics
7 Self-Determination Congress passed the Self-Determination Act Requires facilities that receive Medicare and Medicaid to inform patients about their right to complete an advance directive.
8 Medical Self-Determination 1996 American Medical Association Code of Ethics revised to emphasize importance of autonomy. Physicians have an obligation to relieve pain and suffering and promote the dignity and autonomy of dying patients in their care. Autonomy: Make informed treatment decisions consistent with culture, values, and belief systems. Rooted in medical ethic of autonomy
9 TEDMED Leana Wen, M.D. When Doctors Don t Listen Patient Choice I Family Conversations
10 Survey 85% Doctors should discuss wishes with patients 15% Had discussion with a doctor 25% Patients with serious illness talked about wishes 55% Failed to name a healthcare agent University of Massachusetts Medical School
11 Definitions Palliative Care Hospice Focus on relieving pain & symptoms, curative treatment can continue. Focus on relieving pain & symptoms, providing social, spiritual supports. Generally, but with exceptions, curative care stops.
12 Health care Agent Designated person to make care and treatment decisions. Reasons for not naming a health care agent University of Massachusetts School of Medicine When you die, will your wishes be known? Felice J. Freyer Globe Staff May 12, 2016
13 Thinking Ahead Focus Groups Sacramento San Francisco Fresno Chico Santa Barbara Seniors I People with Disabilities I Providers I Adult Children
14 Lila s Story Honoring Decisions
15 Peace of min Video Report
16 It s my life, let me decide Worries Preferences ignored by medical staff/family Family disagrees with personal choices Healthcare agent authority Treatments and care options available
17 Want to learn more about Responsibilities of the Healthcare Agent How to talk with my family Meaning of specific documents Hospice care I want to remain in control
18 Recommendations Everyday Plain language Short booklets - single topic Short videos - personal stories Large type Include us in the development of materials
19 Being Mortal Project Underwritten by the John and Wauna Harman Foundation Americans are not having the conversations that would allow them to die according to their preferences. Amy Tucci, President & CEO, Hospice Foundation of America
20 Project Overview Nationwide public awareness campaign. PBS FRONTLINE film, Being Mortal, Educate and encourage people. End-of-life preferences and goals with loved ones and medical professionals. Extended through March 31, 2017
21 PBS FRONTLINE film Being Mortal Trailer
22 Almost 500 organizations 246 Hosts/246+ Partners 136 events held, 300 Upcoming 7,750 (approx) have/will attend events by Sept. 1. More events everyday with recent extension!
23 Participant Survey Results Taking Action for First Time of Respondents Who Have Not Previously Taken the Action % 97.97% 97.15% 96.65% 96.22% 95.00% 90.00% 85.00% 80.00% 75.00% 91.33% 92.50% 92.15%
24 Why Host an Event? Participant responses to survey questions What one word best describes this experience? Prepared Inspired Joy Unprepared Overwhelmed Scared Sad
25 Responses Participants and Clinicians Participants 99% Think Everyone should see Being Mortal. 85% Would attend another end-of-life focused event. Clinicians 88% Being Mortal and discussion will be helpful in talking with patients. None felt it would not be helpful. 89% Would encourage colleagues to watch Being Mortal. 72% Pursue education/training on how to talk with patients.
26 Clinician Responses I've received some education or training, but having more would increase my skill and comfort with these conversations (44%) I've received sufficient education or training to feel confident and at ease with these conversations (27%) I've received no education or training in this area, but feel comfortable and confident having these conversations anyway (6%) I've received no education or training in this area and would benefit from it (5%) This type of education/training would not apply to my professional role (2%) N/A - Blank (16%) 16% 5% 2% 44% 6% 27%
27 Reimbursement Advance Care Planning Code Description Amount Explanation and discussion of advance directive forms with or without completing forms, by a qualified health care professional with the patient, family member(s), and/or surrogate. First 30 minutes Physicians, non-physician practitioners, other staff under order and medical management of the physician. $86 office $80 hospital Each additional 30 minutes $75 California Coalition of Compassionate Care Jan 2016
28 Limited Health Literacy Capacity to get and understand basic health information CommuniceCate Health 26 Market St Northampton, MA 01060
29 Limited Health Literacy Could have difficulty with Understanding specific medical advice Knowing what medical terms mean in a document Which document applies to a situation Health Literacy of America s Adults National Assessment of Adult Literacy
30 Physicians End-of-life conversations with families 29% Received training Physicians Views Toward End of Life and Advance Care Planning John A. Hartford Foundation
31 Physicians who talked with their medical provider (their own end-of-life wishes) Yes 48% No 52% Physicians Views Toward End of Life and Advance Care Planning John A. Hartford Foundation
32 Successful Meetings Healthcare Professional Speaks in everyday (Plain) language Willing to listen Provides easy-to-understand forms (if needed) Provides easy read resource materials (if needed) Is sensitive to culture and family relationships I have to understand to make an informed choice and be self-determined
33 Lessons Learned Information makes a difference Join community conversation groups Demand accessible resources Choose health care agent wisely Physicians and other medical professionals want education
34 Resource Materials Presentation Video clips Reports/Surveys Articles
35 HFA BRC
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