1. Having “The Talk”
Opening Conversations About Advance Care Planning (It’s O.K. to talk about it!)
Thank you for joining me today to learn about how you can open conversations about advance care planning for yourself or a loved one. Advance care planning is simply talking with loved ones about what your – or their -- health care choices would be if either of you becomes unable to speak for yourselves. Advance care planning takes the burden off of family, friends and clinicians because it makes them aware of specific wishes. It is truly a gift you give to your loved ones and yourself.

2. Understanding the basics Palliative care Hospice care
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
Today we will cover the basics of why we’re here today, along with information on what palliative and hospice care are all about, legal documents that are required to ensure the wishes of the patient are honored, and how to open conversations about this sensitive topic. Would anyone like to share what motivated them to be here today or what they would like to walk away with at the end of the hour?

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.
[READ SLIDE]
This quote from a hospice nurse says a lot: “Advance care planning is a huge gift for your family. Without it, loved ones already crushed by a sudden crisis may find added to their shoulders the agony of a fateful guess.” Has anyone here been in a situation where you had to make end-of-life decisions for a loved one when you weren’t sure what they would want in their final days or hours?

4. Confusion and reluctance are common (But you are doing yourself and your family a great honor)
We understand that not only can advance care planning be confusing with lots of new terms and concepts, it is also fraught with emotion. I hope you will leave this session today with the tools and resources you need to take steps toward advance care planning for you and your loved ones. Please feel free to ask questions along the way.
[ED. NOTE: SUGGEST SHOWING A VIDEO OR TWO FROM HONORING CHOICES ( TO ILLUSTRATE THE BENEFITS OF ADVANCE DIRECTIVES.]

5. Fast facts Understanding the basics
100 90
90%
82% 80
80% 70 60 50 40
35% 30
27% 20 10 7%
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.
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.
As you can see here, there is a big disconnect between what people say and what they do…
[READ SLIDE]
Source: The Conversation Project National Survey 2013
Source: MN Behavioral Risk Factor Surveillance System, Survey
Source: Survey of Californians by 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
And, while both doctors and patients think having “The Talk” is important, patients and their families think that if they have a serious illness their doctor will begin the conversation, while doctors say they will have these talks if their patients bring up the topic first…so, unfortunately and too often, the subject is never broached.
When David Bowie died in January of 2016, palliative care specialist, Dr. Mark Taubert, published an open letter that said… [READ QUOTE]
What are your observations about this quote?

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.
Let’s get started on talking about some of the key concepts in advance care planning: Palliative care and hospice care.
First, let’s look at palliative care and what it is…and isn’t.
What do you think of when you thing about “comfort care?” For most, it’s actually a pretty warm thing to consider. Maybe it’s a new down comforter on your bed; a warm cup of soup on a cold day; a kind word when you’re feeling down…[DISCUSSION]
What you see on the slide is the “official definition [READ SLIDE; DEFINE AND DISCUSS INTERDISCIPLINARY CARE]

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
Here are the pillars of palliative care [READ SLIDE, INCLUDING QUOTE].

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
As part of advance planning, it will be important to understand where they would ideally like most or all of the palliative care to occur. You may not always be able to honor the patient’s wishes but if, for example, a frail elderly parent needs to be in a care setting when they would prefer to be at home, you will have the opportunity to discuss they whys in in an open and honest way.

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.
Here we see samples of who may be most likely to need palliative care, but it is available to anyone of any age who has a serious and/or life-limiting illness.
I’ve included a quote here by Dr. Atul Gawande [READ QUOTE]. If you are not familiar with his work, I highly recommend checking out his website, provided on slide 18, and his book titled Being Mortal: Medicine and What Matters in the End.

11. Palliative care is not the same as hospice
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 of their 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
It’s also important to understand the difference between palliative care and hospice care. [READ SLIDE]

12. Hospice embraces six core concepts:
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.
[READ SLIDE]

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.
Now that you understand the basics of palliative and hospice care, let’s move on to advance care planning and how you can get the conversation started with your loved ones.
[READ SLIDE]

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.
On this slide, you see the components of advance care planning. These are described in greater detail in the glossary of terms, provided in your materials today. In short:
Advance care planning is simply the conversation process that we’ve been describing. And, by the way, this isn’t a “one and done” conversation. As needs and circumstances change, it’s important to revisit your advance health care directives. Some people refer to the “Five Ds” of reviewing your directive: You start a new DECADE; there is a DEATH that affects you; you get DIVORCED or have a relationship status change; you receive a significant DIAGNOSIS; there is a DECLINE in your health status.
2. An advance health care directive, also known as a living will, is a formal legal document, authorized by state law, that describes the kinds of medical treatments a patient does or does not want if they become unable to speak for themselves. Within an advance health care directive, patients may designate a person (health care agent) to make treatment decisions if they are unable to do so. The health care agent has the same rights to request or refuse treatment for a patient who is not capable of making or communicating decisions.
3. The national POLST paradigm is an approach to end-of-life planning based on conversations between patients, loved ones, and health care professionals. It is designed to ensure that seriously ill or frail patients can choose the treatments they do or do not want and that their wishes are documented and honored. Palliative and hospice providers often recommend the POLST be posted on a refrigerator so it is readily available if emergency personnel are called to the home.

15. 1 2 3 Advance care planning: Three questions
Starting the conversation
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? 1 2
These are the three main questions to ask when starting the conversation.
[READ SLIDE. THIS IS A GREAT PLACE TO STOP AND FACILITATE TWO-WAY DISCUSSION ABOUT THESE QUESTIONS. OFFER EXAMPLES TO GET THE CONVERSATION STARTED.] 3

16. Advance care planning: Five things to consider when choosing an agent
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? 1 2 3 4
Appointing a health care agent or proxy requires a legal document. Here are the five most important questions to ask when considering who you will appoint.
[READ SLIDE] 5

17. 1 2 3 Advance care planning: Goals of care
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? 1 2 3
These are the three main questions to ask when you develop the goals of care.
[READ SLIDE. THIS IS ANOTHER GREAT PLACE TO STOP AND FACILITATE TWO-WAY DISCUSSION ABOUT THESE QUESTIONS. OFFER EXAMPLES TO GET THE CONVERSATION STARTED.]

18. Honoring Choices MN (honoringchoices.org)
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
We’ve been through a lot of material in a short time, so I’d like to take any questions and direct your attention to the supplemental materials that include the Glossary of Terms and FAQs.
[ED. NOTE: YOU MAY ALSO CHOOSE TO PRINT OUT YOUR STATE-SPECIFIC ADVANCE DIRECTIVE, AVAILABLE THROUGH MOST OF THE SITES ABOVE, OR SIMPLY DIRECT PARTICIPANTS TO A SITE SO THEY CAN PRINT IT.]

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