The Talk": Opening Conversations About Advance Care Planning

1. Having “The Talk” Opening Conversations About Advance Care Planning (It’s O.K. to talk about it!)

2. Agenda Opening Conversations About Advance Care Planning • Today’s opportunity • Understanding the basics • Palliative care • Hospice care • Starting the conversation • Making a plan • Q&A

3. Today’s opportunity To increase awareness and understanding about advance care planning and end-of-life care so you are better able to calmly and confidently participate in informed, compassionate conversations about these sensitive issues with your loved ones and health care providers before the need arises.

4. Confusion and reluctance are common (But you are doing yourself and your family a great honor)

5. Fast facts • Understanding the basics 100 90 90% 82% 80 80% 70 60 50 40 35% 30 27% 20 10 7% 0 80%say that, if they were seriously ill, they would want to discuss end-of-life care with a doctor, although only 7%have done so. 90%say talking with loved ones about end-of-life care is important, but only 27%have done so. 82%say it is important to put wishes about end-of-life care in writing, but in Minnesota only 35%have done so. Source:The Conversation ProjectNational Survey 2013 Source:MN Behavioral Risk FactorSurveillance System, 2014 Survey Source:Survey of Californiansby the California Healthcare Foundation, 2012

6. The gap: Having “The Talk” Understanding the basics • Doctors and their patients both think having these talks is important—however… • Patients and their families think that if they have a serious illness, their doctor will start the talk. • Doctors say they will have these talks if their patients bring up the topic first. “Many people I talk to as part of my job think that death predominantly happens in hospitals, in very clinical settings, but I presume you chose home and planned this in some detail. This is one of our aims in palliative care, and your ability to achieve this may mean that others will see it as an option they would like fulfilled.” Palliative care specialist, Dr. Mark Taubert, in an open letter to David Bowie upon his death, January 2016

7. Palliative care (Did someone say “comfort care?” That sounds O.K.) Both a philosophy of care and a highly organized system for delivering care… …with a goal of assuring that each person experiences the best quality of life throughout the illness episode, concurrent with life-prolonging care. Short definition: Care for patients and their families, provided by a health care team, that improves quality of life during a serious illness.

8. Pillars of palliative care • Understanding the basics • Pain and symptom management. • Psychosocial and spiritual support for the patient and the family. • Information and support to make decisions that reflect goals and values. • Continuity of care (your trusted doctors and caregivers will be involved). “Some people mistakenly believe that palliative care is only for patients who are incurably ill. The goal of palliative care is to provide relief from symptoms, and stress of a serious illness, whatever the diagnosis.” Raymond Yung, M.D. chief of the Division of Geriatric and Palliative Medicine in the University of Michigan Medical School

9. Where is palliative care provided? (Where the patient is safe and comfortable!) • Hospital • Home • Loved one’s home • Nursing homes • Assisted living • Hospice care center

10. Who does palliative care help? • Understanding the basics • Those who have serious and/or life-limiting illness, for example: • Chronic disease(s) • Cancer • Frail elderly “Medicine has triumphed in modern times, transforming the dangers of childbirth, injury and disease from harrowing to manageable. But when it comes to the inescapable realities of aging and death, what medicine can do often runs counter to what it should.” Atul Gawande, M.D.

11. What is hospice care? • Understanding the basics Palliative care is not the same as hospice • Hospice cares for people with a six-month life expectancy based on the course oftheir disease. • Patients receiving hospice care are no longer receiving curative treatment. • Care is often delivered at home, but can also be delivered in facilities. “In the end, it's not the years in your life that count. It's the life in your years.” Abraham Lincoln

12. Hospice philosophy • Understanding the basics Hospice embraces six core concepts: • Death is a natural part of life. (Human have a 100% mortality rate!) When death is inevitable, hospice will neither seek to hasten nor postpone it. • Hospice care establishes pain and symptom control as an appropriate clinical goal. • Hospice recognizes death as a spiritual and emotional, as well as physical, experience. • Patients and their families are a unit of care. • Bereavement (grief) care is critical to supporting family members and their friends. • Hospice care is made available by most hospices, regardless of the ability to pay.

13. Advance care planning • Understanding the basics What it is: Advance Care Planning is a process focusing around conversations about health care choices for the future. Why it matters: Any one of us could be in a situation at any time where we are unable to speak for ourselves or make choices about health care. Your doctors and loved ones can’t follow your wishes if they don’t know what they are. How to begin: Resources are available online, through many health care providers, faith centers, and other organizations (see slide 18). The Conversation Project offers a free “Welcome to the Conversation” starter kit.

14. Advance care planning: Components Advance Care Planning:A conversation process every adult should have. Advance Health Care Directive:A written document all adults age 18 and over should complete after contemplation and discussion. Polst (Physician Orders for Life Sustaining Treatment):A specific medical order written for seriously ill people meeting specific criteria.

15. Advance care planning: Three questions • Starting the conversation 1 2 3 Who would you want making decisions for you if you were unable to make them yourself? What would be the goals of treatment if you permanently lost the ability to meaningfully know who you were, who you were with, or where you were? Do you have any spiritual, personal or cultural views that would affect treatment choices?

16. Advance care planning:Five things to consider when choosing an agent 1 2 3 4 5 Do you trust this person to make tough decisions? Will this person honor your wishes even if they do not agree with them? Is this person emotionally strong enough to make choices at a difficult time? Can this person stand up for you if family members disagree? Is this person nearby and available in the event of an emergency?

17. Advance care planning: Goals of care 1 2 3 What gives meaning, or brings quality, to your life right now? What worries or fears do you have about aging, or about your health? What helps you get through tough times or stressful situations?

18. Trusted resources • Honoring Choices MN (honoringchoices.org) • Minnesota Network of Hospice and Palliative Care (mnhpc.org) • National Hospice and Palliative Care Organization (nhpco.org and caringinfo.org) • National Hospice Foundation (nationalhospicefoundation.org) • The Conversation Project (theconversationproject.org) • Dr. Atul Gawande (atulgawande.com): Being Mortal: Medicine and What Matters in the End

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