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End of Life Decisions: How Families Can Become Conversation Ready!

April 7, 2015FCS Webinar Series

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• All materials shared during today’s session are available at:

www.montana.edu/extensionecon/fcswebinarseries.pdf

Resources

NHDD Speak Up Video

http://www.nhdd.org/

3 minutes 27 seconds

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oYesoNo

Poll A: Do you have a living will? (termed declaration in Montana)

www.nhdd.org

April 16, 2015

• 73% of Americans would prefer to die at home, but anywhere between 20-50% of Americans die in hospital settings.

Did You Know?

• 50% of dying persons with cancer or other chronic illnesses experience unrelieved symptoms during their final days.

Did You Know?

• Recent studies demonstrate an increased likelihood of depressive symptoms and mortality among caregivers of terminally ill patients.

Did You Know?

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life

Suggested citation: IOM (Institute of Medicine). 2014. Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.

www.iom.edu/endoflife

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•The majority of patients will receive acute hospital care from physicians who do not know them.

Key Finding

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• Advance care planning is essential to ensure that patients receive care reflecting their: values goals preferences

Key Finding

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o Trueo False

Poll B: Most people nearing end of life are capable of making their own decisions about care.

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• Most people nearing end of life are not physically, mentally, or cognitively able to make their own decisions about treatment.

False

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Online Resources about End of Life Conversations

theconversationproject.org

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Ellen GoodmanCo-Founder and Director

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Conversation Starter Kit

theconversationproject.org

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Conversation Starter Kit12 Pages

• Step 1: Get Ready• Step 2: Get Set• Step 3: Go• Step 4: Keep Going• Resources

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o1 Only the Basics about my condition and my treatment

o2o3o4o5 All the details about my

condition and my treatment

Poll C: As a patient, I’d like to know… on a scale of 1 - 5

2020

o1 My doctors to do what they think is best

o2o3o4o5 To have a say in every

decision

Poll D: As doctors treat me, I would like…on a scale of 1 to 5

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o1 Not know how quickly it is progressing

o2o3o4o5 Know my doctor’s best estimate

for how long I have to live

Poll E: If I had a terminal illness, I would prefer to…on a scale of 1 to 5

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oI just answered some questions about how I want the end of my life to be. I want you to see my answers. And I’m wondering what your answers would be.

Ice Breakers

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oI was thinking about what happened to _____and it made me realize I need to make decisions so that doesn’t happen to me.

Ice Breakers

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Pediatric Starter Kit22 Pages

http://theconversationproject.org/wp-content/uploads/2014/10/TCP_PediatricSK_Forms_rev7.pdf

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Pediatric Starter KitFeature: Share your Stories

• Step 1: Get Ready• Step 2: Get Set• Step 3: Go• Step 4: Keep Going• Resources

www.agingwithdignity.org

www.agingwithdignity.org

• Families and Individuals• Health Care Providers• Places of Worship• Businesses and Employers

www.agingwithdignity.org

www.agingwithdignity.org/five-wishes.php

• SampleOn line free Individual Copy: $5.00Orders of 25+ $1.00

https://fivewishesonline.agingwithdignity.org

• Secure Online SystemIntroduced in 2011 Guides you through Five Wishes

Free Sample Copy

Contents: 22 pagesMy SignatureMy ComfortMy SupportMy Medical Care DecisionsMy Medical TreatmentMy Family/Friends To KnowMy Spiritual ThoughtsMy RemembranceMy BelongingsMy Voice (Letters)Glossary

Voicing My CHOICES Focus: ages 16 - 28

www.compassionandchoices.org

www.compassionandchoices.org

• End of life Consultation Packet• Doc 2 Doc Program• Good-to-Go Resource Guide• Good-to-Go Toolkit

www.compassionandchoices.org

• Unwanted Medical Treatment Toolkit Senior Medicare Patrol Help Medicare and Medicaid beneficiaries

prevent, detect, and report health care fraud

www.deathwise.org

www.deathwise.org

• Start the Conversation• Take Care of the Essentials• Share Your Personal Preferences

• Resources• Blogs

www.deathwise.org

www.nihseniorhealth.org/endoflife

• Preparing for the end of life• Addressing pain• Addressing other signs and

symptoms• Addressing mental and

emotional Issues

• Paying for Care Excellent summary of options

• Handling Health Care issues Should life support be used What is the patient’s heart stops

beating? What if breathing or feeding tubes

are suggested?

www.engagewithgrace.org

www.engagewithgrace.org

The One Slide Project

1. On a scale of 1 to 5, where do you fall on this continuum?

2. If there were a choice, would you prefer to die at home, or in a hospital?

3. Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?

4. Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near?

5. Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive?

Can You and Your Loved Ones Answer These Questions?

1 2 3 4 5

Don't give up on me no matter what, try any proven and unproven intervention

possible

Let me die without medical intervention

Our Conversation Can Make a Difference

• “I want you to be able to communicate for me if I am too sick to speak for myself and not ‘second guess’ yourself”

www.engagewithgrace.org

Our Conversation Can Make a Difference

• “When I am in a vulnerable state, I don't want to worry that you will listen to others opinions about ‘what is best for me’”

www.engagewithgrace.org

www.americanbar.org/groups/law_aging.html

•Consumer’s Tool Kit for Health Care Planning

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• Tool #1: How to Select Your Health Care Agent or Proxy

• Tool #2: Are Some Conditions Worse Than Death?

• Tool #3: How Do You Weigh Odds of Survival

Consumer’s Tool Kit for Health Care Advance Planning

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• Tool #4: Personal Priorities and Spiritual Values Important to Medical Decision

• Tool #5: After Death Decisions to Think About Now

Consumer’s Tool Kit for Health Care Advance Planning (con’d.)

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• Tool #6: Conversation Scripts: Getting Past the Resistance

• Tool #8: What to Do After Signing Your Health Care Advance Directive

Consumer’s Tool Kit for Health Care Advance Planning (con’d.)

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• Tool #9: Guide for Health Care Proxies

• Tool #10: Resources: Advance Planning for Health Care

Consumer’s Tool Kit for Health Care Advance Planning (con’d.)

www.americanbar.org/groups/law_aging/

MyHealthCareWishesApp.html• Imagine having your wishes and

those belonging to your loved

ones stored in one place, just

a click away.

• App Cost: $3.99

My Health Care Wishes App

www.talkofalifetime.org

• Funeral and Memorial Information Council (FAMIC)

www.talkofalifetime.org

• Download Free

Workbook

www.caringinfo.org/planningahead

www.caringinfo.org

• Are youPlanning ahead

Caring for Someone

Living with an Illness

Grieving a Loss

Reaching Your Community

Looking for Resources

www.caringinfo.org/planningahead

• Information for Family and Friends of People at the End

of Life

• Planning Ahead Checklist

• Advance Care Planning Brochures

• Center for Practical BioethicsGuidance at the Crossroads of Decision

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www.practicalbioethics.org/resources/caring-conversations

• Caring Conversations• Caring Conversations for Young

Adults• Courageous Conversations for

Military Veterans

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www.prepareforyourcare.org

• Make Medical Decisions for yourself and others

• Talk With Doctors

• Get the Medical Care that is right for you

www.prepareforyourcare.org

• Provides an online “study at home” approach with informative screens &

videos

• Move on after reading each screen

www.aarp.org/home-family/caregiving/end-of-life

• Caregiving Resource CenterInformation, Tools and Tips for

Caregivers

www.caringinfo.org/planningahed

• Next Step in Care

• Free caregiver guides and checklists on a variety of

topics including transitioning between care

settings

www.aarp.org/home-family/caregiving/end-of-life

www.hudsonwhitman.com/n-21

Looks at trends to prolong life at all costs, and the value of having conversations about mortality and end-of-life care, before it’s too late.

• A Mobile Journal

• Online

• App (free iOS)

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States’ Online Resources for End-of-Life conversations

www.honoringchoices.org

www.honoringchoices.org

www.makingchoicesmichigan.org/resources

• Educational Resources: Examples for End-of-Life Decision Making

www.makingchoicesmichigan.org/resources

• VideosA Beautiful Death-Going Your WayAging in Iowa-Being Prepared for the

InevitableHonoring Choices Minnesota: Faith,

Culture, & Identity Perspectives

www.coalitionccc.org

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oCare that provides symptom relief and other supports for people with serious illness

oAnother term for hospiceoThe default care choice when it

is no longer possible to cure an illness

oCare that comes only when people die

Poll F: What is palliative care?

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• Care that provides relief from pain and other symptoms.

• Supports quality of life.• Focused on patients with serious advanced illness and their families.

Definition

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Books for End of Life Conversations

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Games to Help Start End-of-Life Conversations

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www.mygiftofgrace.com

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Sample: Question 23If you could control only one thing about the place where you spend your last hours of life, what would it be?

www.mygiftofgrace.com

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Sample: Question 39Your will is a list of things you will give away after you die. What gift would you be better off giving today rather than after your death?

www.mygiftofgrace.com

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Cost:• $24.95

www.mygiftofgrace.com

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gowish.org

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gowish.org

• Electronic Version Game (FREE)–http://

gowish.org/staticpages/index.php/thegame

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gowish.org

• Cost:–Coda Alliance–Reach & Teach

• Set of 2 packs $24.00• Set of 4 packs $40.00• Set of 8 packs $64.00

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gowish.org

• Viewer Reward– If you would like to have a deck

of the Go Wish game cards, send an email after this session to goetting@montana.edu

–Available only to April 7, 2015 participants…as long as supplies last

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Resources

Montana Rights of the Terminally Ill

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• MontGuide 199202

Montana law•Allows an individual

who is of sound mind to write a declaration

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Declaration

• Governs withholding or withdrawing of life-sustaining treatment when a person is in a terminal condition

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Declaration

• Signed by– Declarant – Two witnesses

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Declaration•Does not have to be notarized

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Becomes Operative

1. Attending physician determines that you are in a terminal condition and…

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Becomes operative

2.You are no longer able to make decisions about the administration of life-sustaining treatment

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POLST Provider Ordersfor Life-Sustaining Treatment (POLST)Revised March 2014

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I have a living will/ advance directive/ health care power of attorney………

Why do I need POLST?

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Advance Directives

Often unavailable to health care providers:• Not necessarily transferred from one health care facility to another

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Advance Directives

Often not usable•Patient did not provide specific details about his/her preferences

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VoluntaryPOLST Form• Recognized as actual medical order that will be honored by: •All Montana health care providers

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What preferences can I express on the POLST Form?

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Section A:• Treatment Options:

Attempt Resuscitation (CPR)

Do Not Attempt Resuscitation (DNR) (Allow Natural Death)

• If patient is not in cardiopulmonary arrest, follow orders found in sections B and C.

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Section B:• Treatment options if has a pulse

and/or is breathing: Comfort Measures ONLY Limited Additional

Interventions Full TreatmentOther Instructions……..

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Section C:•Artificially Administered Nutrition

No Artificial Nutrition by Tube. Defined trial period of Artificial

Nutrition by Tube. Specifically:_______________

Long Term Artificial Nutrition by Tube.

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Section D:•Discussed with:

Patient Health Care Agent or

Decision-Maker Court Appointed

Guardian Other ______________

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Montana’s End-of-Life Registry

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End-of-Life Registry Goal

• Provide place to store advance directives online

• Give authorized health care providers immediate access

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How to file an advance directive:

•Complete 2 formsAdvance DirectiveConsumer Registration Agreement

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Both forms:• Available online http://

endoflife.mt.gov

• Office of Consumer Protection 1-866-675-3314

Where to get forms:

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oMontana Rights of the Terminally Ill

oPOLSToMontana End of Life Registry

oNone of the above

Poll G: Which program have you presented to your clientele? (Check all that apply)

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Other MSU Resourceswww.montana.edu/extensionecon/familyeconomics/presentations.html

• Making Plans for the End-of-Life– Sandy Bailey– 26 slides

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End of Life Decisions: How Families Can Become Conversation Ready!

Questions????????

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Thanks to Keri Hayes for developing the slides for this webinar

Acknowledgment:

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• It’s Time to Have the Conversation

• Newly released30 seconds

Institute of Medicine PSA