LET’S HAVE THE CONVERSATIONADVANCE CARE PLANNING & ADVANCE DIRECTIVES

JUST LIKE THAT

Anyone had something unexpected

happen to them recently?

JUST LIKE THAT

• Imagine these scenarios –

• A sudden event (such as a car accident or illness) left you unable to communicate. The

doctors believe there is little chance (<5%) you will recover the ability to know who you are

or who is with you

• Your mom has been in the hospital three times in the last six months. She is not following

the doctor’s advice for her Congestive Heart Failure. Each time she returns to her home in a

weaker state and has said she is tired

• A colleague complains of abdominal pain and gets a diagnosis of pancreatic cancer with a

prognosis of 4-6 months

WE ARE NOT PROMISED TOMORROW

• Sometimes things happen that remind us how fragile life is

• Despite our best efforts to be in control, sometimes we are not

• A sudden event happens to any of us, at any age

• Fears, stress, concerns, unknowns cause angst

• You are not powerless around unexpected, unplanned changes

• You have the ability to take control of the final story of your life

DEFINING OUR TERMS

• ADVANCE CARE PLANNING (ACP) - A process of reflection,

discussion, and communication of treatment wishes in the event you

are unable to make your own decisions. This process leads to an

Advance Directive.

• ADVANCE DIRECTIVE (AD) - An oral or written legal statement

in which a person declares one’s treatment wishes in the event you

are unable to make your own decisions.

DEFINING OUR TERMS

• HEALTH CARE AGENT (HCA) or PROXY - A legal document that

names someone as your agent/proxy to express your wishes and make health care

decisions for you when you are no longer able.

• DURABLE POWER of ATTORNEY for Health Care (DPOAHC)

A legal document that names someone as your agent/proxy to express your

treatment wishes and make health care decisions when you are no longer able.

WHY TALKING MATTERS

• Sharing your wishes for end-of-life care can bring you closer to your loved ones.

Consider the facts:

• 90% say talking with their loved ones about end-of-life is important.

• Only 28% actually have done so.

• 80% say if seriously ill, they want to talk to their doctor about their wishes

for medical treatment toward the end of their life.

• 7% report having had this conversation with their doctor.

WHY TALKING MATTERS

• 60% say that making sure their family is not burdened by tough decisions

is extremely important.

• 56% have NOT communicated their end-of-life wishes.

• 82% say it’s important to put their wishes in writing.

• 23% have actually done so.

(Source – The Conversation Project)

One conversation can make all the difference

WE ALL HAVE A STORY….

We all know someone who died in a way we

would want to change if it was our death….

right?

CPR FACTS - DID YOU KNOW?

• Attempts to restart your heart and breathing may

• Result in being on a breathing machine for a time

• Need to be in ICU

• Have damaged or broken ribs

• CPR in the hospital – adults with serious illness who get CPR and live

• At most, 15 out of 100 leave the hospital and may live an average of 4 months

CPR FACTS - DID YOU KNOW?

• CPR outside the hospital

• Adults living in the community who get CPR and live

• 5 out of 100 leave the hospital and may live up to 1 year

• Adults living in a residential setting who get CPR and live

• 2 out of 100 leave the hospital and may live up to 1 year

• The decision about CPR is an individual one and needs to best match your

values but making an educated decision is critical

GETTING READY TO SHARE

• Your values, wishes and healthcare goals drive the conversation

• Put all your thoughts in writing for clarity – the small, quirky things count

• Create a list of topics you want to learn more about before your final

thoughts are formulated – e.g. CPR, Congestive Heart Failure

• There are many tools that provide a framework to help formulate the

conversation - e.g Five Wishes, The Conversation Project, Respecting

Choices, Caring Conversations, etc.

GETTING READY TO SHARE

• What are the “never” events you don’t want to happen?

• Yes or no on CPR or feeding tubes?

• When the time comes do you want to be surrounded by loved ones or alone?

• Spend your last days at home or receive care at the best place for your condition?

• If terminally ill, do you want to know how quickly it is progressing?

• How long do you want to receive care – indefinitely, no matter what or worried it will

be overly aggressive care?

HEALTH CARE AGENT SELECTION

• Selecting the right person is one of the most important decisions

• It may not be who you would initially think of – your spouse, child

• The key criteria is that the Health Care Agent (HCA) must be willing to

honor your wishes even when they don’t agree with your decisions

• Trust is an essential quality in this selection – when things get tough, will

they stay true to your wishes?

THE CONVERSATION – WHEN AND WHERE

• Some prefer to have a 1:1 conversation with their HCA initially and then include more

loved ones with the subsequent discussion – no right or wrong way – Just Do It!

• Natural gathering times may be a good setting – the next holiday, your birthday, before a

trip, preferably while you are healthy or before you get sick again.

• The setting – the kitchen table, on a walk, in the park, at a quiet spot at your place of

worship, or a special place of comfort for you. It has the potential to be an emotional

conversation so privacy may be an important consideration.

HELPFUL RESOURCES

• Who Will Speak for You? Selecting your Health Care Agent

https://www.youtube.com/watch?v=iTxv-20ULwQ

• How to Start the Conversation

https://www.youtube.com/watch?v=pyMXtVprN74

• Write a Letter to Your Loved Ones

https://www.youtube.com/watch?v=78LvYE3vMOA

ADVANCE DIRECTIVES & DPOA

• Each state has different rules about Advance Directives –

• Missouri – Documents must be notarized and have two witnesses

• Many different forms available - Examples

• Missouri Bar Association has a fillable form – www.mobar.org → Durable Power of Attorney

for Healthcare – Free and includes an instruction manual and HIPAA form

• Five Wishes Document – Aging with Dignity - There is a charge

• Caring Conversations – The Center for Practical Bioethics

• The Conversation Project

SHARING YOUR WISHES

• Your parents keep their Advance Directives in a “safe” place, correct?

_____________________________________

• Once documents are executed, share with many key audiences

• Health Care Agent/Proxy/DPOAHC

• Physician

• Electronic Health Record

• Clergy

• Have available for EMS

• Loved Ones / Friends

SHARING YOUR WISHES

• An Advance Directive(AD) is not a forever document –

• An AD can be changed at anytime, for any reason – e.g. your HCA dies – it is your

document

• Review every 5 years – health changes may occur / beliefs / preferences evolve

• Change of Condition – New diagnosis or an unexpected event can warrant a change

in the AD specifics

• The revised document becomes the legal document BUT only if it is shared with all

those key audiences and replaces the existing document. Destroying the old ones

reduces any confusion.

WHAT MATTERS MOST TO YOU?

• “Hooked up to tubes and machines – is that what you desire?

• “Save hours, days, years of torment by having your own conversation.”

• Replace fear with control for your future healthcare decision.”

• How do I want to live? What are we willing to do about that?

• What matters the most to us about living? What matters the most to us about dying?

Unless I tell you, you will never know what my wishes are.”

~ Excerpts from various TedX Talks

MEANINGFUL LIFE

• Having the conversation takes courage

• Having a resource may enhance the ability to complete and

share the documents

• Meaningful Life was created to be a resource and make it

easier to take a brave step and write down your end-of-life

wishes so they can be honored

MEANINGFUL LIFE

My goal is to raise the bar beyond the 28%

completion mark.

Are You Willing to Help Me?

Our ultimate goal, after all,

is not a good death but a

good life to the very end.”

~ Atul Gawande

MEANINGFUL LIFE

Questions?

MEANINGFUL LIFE

Thank You

Carla Baum, Meaningful Life

cbaum1life@gmail.com

1life1decision1story.com

314-402-6624