Advance Care Planning:Part II

Living Faithfully, Dying Gracefully™ SeriesFaith and Health Ministry

Gloria Dei Lutheran Church

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How Is It Going?

• Did any of you have a conversation with someone about your wishes concerning your care at end of life?

• Did anyone use the Conversation Starter Kit in your packet? Was it helpful?

• What barriers did you encounter? Did you find ways around them that might be helpful to others?

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Overview

• In Session I, we focused on – Choosing a health care agent to speak for you if you are

unable to speak for yourself– The importance of discussing your wishes and concerns with

your • family and loved ones • health care team• health care agent • caretakers

• In Session II, we will focus on specific instructions for your health care agent and completely the long-form health care directive.

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Review of Session I

• What is advance care planning?– Thinking about your hopes and wishes for your final

journey – what are your deepest needs and concerns?– Choosing a health care agent – someone to speak for

you if you are unable to speak for yourself– Conversations with your loved ones, health care

agent, doctors, faith leaders and caretakers so they understand and can carry out your wishes

– Completing or updating a health care directive to document what you have decided

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Review

• What is a “health care directive”– A legal document– Goes into your medical file– Names your health care agent– Describes your hopes, values, wishes and concerns

• What are your wishes regarding life-prolonging treatments such as help with breathing or CPR?

• What are your wishes regarding other treatments?• What makes your life worth living? When would life no longer be

worth living?• Religious choices, such as anointing• Organ donation

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Review

• The legal document is important, but not enough• The most important thing is to discuss your wishes

with your health care agent, loved ones, doctors, faith leaders and caretakers – To make sure you know and understand your options– To make sure they know and understand your wishes

• You can’t anticipate every possibility• These conversations will help your health care agent,

loved ones and care providers know how best to honor your values and wishes no matter what happens

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Honoring Choices Minnesota® Health Care Directive Form

• A collaborative project between the Twin Cities Medical Society, the health care community and the community at large to bring advance care planning to the Twin Cities metro area

• Every major health care system has accepted the Honoring Choices® health care directive form– Medical personnel are familiar with it– Introduces uniformity into a field in which everyone

had their own form

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The Basics

• Everyone 18 or older should have a health care directive appointing a health care agent

• A directive is a living document. It should be reviewed (and if necessary updated) when you have a physical exam, your life circumstances change or any of the “Five D’s” occur:– Decade– Death of a loved one– Divorce– Diagnosis– Decline

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More Basics

• Sign your health care directive EITHER– Before two witnesses – any two people, but• Only one witness can be your health care provider or

an employee of your health care provider• Your health care agent cannot also be a witness

OR– Before a notary public

• Put your name and initials and the date on each page

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More Basics

• Share copies with your agent, family, loved ones, heath care providers and caretakers– Share updates and destroy copies that are no longer

current– Your doctors will decide which document is most

current by the date on the page• Put a copy on your refrigerator and glove

compartment• Take it with you when you go to a hospital or new

doctor

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Five-Part Form

Part 1: Your Health Care AgentPart 2: Your Health Care InstructionsPart 3: Your Hopes and WishesPart 4: Making It Legal Part 5: Next Steps

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Part I: Naming a Health Care Agent

• For information about choosing a health care agent, review the handout entitled “Choosing a Health Care Agent”

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Powers of Your Health Care Agent

• Standard Powers– Give, refuse or withdraw permission for any treatment– Interpret your instructions based on your agent’s

understanding of your wishes, values and beliefs– Choose your health care providers– Choose where you will receive care– Review and release your medical records– Make decisions about organ and tissue donation and autopsy

according to your instructions in Part 2 of this document• You may limit these powers or assign others in the space

provided on the form

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Some Additional Powers

• Check the box on the form if you want your agent to have the power to– Make decisions about the care of your body after

your death– Continue as your agent even if you get divorced– Whenever you say so, make decisions for you even

if you could speak for yourself – If you are pregnant, decide whether to try to

continue your pregnancy based on your agent’s understanding of your values or instructions

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Cardiopulmonary Resuscitation(Part 2, #1)

• What is CPR?– An emergency procedure to try to keep your heart

pumping and oxygen flowing to your brain• How is it done? – Another person may breath into your mouth and

press on your chest– Medicine and electric shocks may be – A tube may be put down your throat to help you

breathe– Can be painful and difficult

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How Effective is CPR?

• In the hospital, less than 1 in 5 (17%) have a chance of recovering

• Among older, weaker people living in nursing homes, about 1 in 30 (3%) recover after CPR

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When Does CPR Work Best?

• If CPR is given within a few minutes of when your heart or lungs stop working

• If you are otherwise generally in good health

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When May CPR Be Less Successful?

• You have a chronic (long-term) disease or impaired functioning or both

• You are older and weak

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What May Happen After CPR?

• You may need to be on a breathing machine for a while because your lungs will be weak

• You may need to be cared for in an intensive care unit (ICU)

• You may have brain damage• You may have damage to your ribs

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CPR Preferences

• ALWAYS: I want CPR no matter what (always try to resuscitate me)

• NEVER: Do not attempt CPR. A allow me to die a natural death– If your choose this option, see your doctor and get

a Do Not Resuscitate (DNR) Order (a POLST)– DNR Order is required before entering hospice

care

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CPR Preferences

• MIDDLE GROUND: I WANT CPR UNLESS my doctor determines:– I have an incurable disease or injury and I’m dying

(If I am in the process of dying, don’t prolong my death) OR

– I have no reasonable chance of surviving even if I am resuscitated

(There is no reasonable chance that CPR will save my life) OR

– I am not likely to survive very long if I am successfully resuscitated and CPR would cause significant pain and suffering

(It’s not worth the pain and suffering to gain a few hours or days)

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Other Treatment Choices (Part 2, #2)

• Examples include– Dialysis– Chemotherapy– Blood transfusions– Surgery

• May change as your diagnoses change or your illnesses progress

• You will always continue to receive – Pain and comfort medicines– Food and fluids by mouth, if you are able to swallow

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Treatments to Prolong Life

• Treatments to Prolong Life (Part 2, #3)– This section only applies if • you are unable to make decisions for yourself and • it is reasonably likely that you will not recover the

ability to know who you are

– No matter what you decide, you will continue to receive• pain and comfort medication• food and fluids by mouth if you are able to swallow

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Treatments to Prolong Life (Part 2, #3)

• Standard Choices– I want to stop or withhold all treatments that are

prolonging my life• Tube feedings• Breathing machines• Antibiotics and flu shots• CPR

– I want all “appropriate” treatments recommended by my doctor -- until my doctor and agent agree they are harmful or no longer helpful

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Tube Feeding

• What is tube feeding?– A way to give you food and water if you are not able

to swallow normally or take enough food or water in by mouth

• How does it work?– A tube is placed either

• Through your nose (or mouth) into your stomach• Through your skin into your stomach

– Nutrients and water are slowly pumped through the tube

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Tube Feeding

• When does tube feeding work best?– If you only need it for a short time to recover from

surgery or illness– You are generally in good health

• When does tube feeding not work as well?– You are older and weak– Your body is becoming weak from long-term health

problems– You have an illness that can no longer be successfully

treated

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Tube Feeding

• What are the risks of tube feeding?– Food can spill into your lungs and cause infection

(such as pneumonia)– Fluids can build up in your body, if your body is no

longer able to absorb fluids properly, causing discomfort in your lungs, stomach, hands and other parts of your body

– Your hands may need to be tied down so that you don’t pull the tube out

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Tube Feeding

• What happens if you refuse or discontinue tube feeding?– You will die naturally– You won’t feel hungry– You may feel thirsty or have a dry mouth – ice

chips can help relieve these symptoms

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IV Fluids

• Helpful for prolonging life in most circumstances

• BUT, if you are actively dying, your body is no longer able to absorb fluids properly. Under these circumstances, fluids will build up in your body, causing discomfort in your lungs, stomach, hands and other parts of your body

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Help With Breathing

• What is a ventilator?– A machine that pushes air and oxygen into your lungs to

help you breathe– The machine connects to a tube that goes through your

mouth and into the windpipe at the back of your throat– You can’t speak or swallow when the tube is in– Medicine helps you stay quiet so that the tube stays in

place– While you are on a ventilator, you will be cared for in

the Intensive Care Unit (ICU)

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Help With Breathing

• What is a CPAP (also known as BiPAP)?– Continuous Positive Airway Pressure– A treatment that pushes oxygen into your lungs

through a mask• What are the drawbacks of this treatment?– It may be uncomfortable– Air can go into your stomach and cause pain– It may be difficult to talk

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Help With Breathing

• Ventilators and masks work best if– Your lung problem can be fixed– You only need help breathing for a short time, for

example, to recover from surgery• They don’t work as well if– Your body is shutting down – You have an illness that can no longer be successfully

treated– You aren’t able to tolerate high-pressure air flow into

your lungs

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Help With Breathing

• What will happen if I decide I don’t want a ventilator or CPAP?– If you can’t breathe on your own, you will die

naturally– You can take medicine to help you relax, control

any pain, ease your fear, and control your breathing problem as much as possible

– You may also get oxygen through a tube in your nose

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POLST!!

• What is a POLST? – POLST stands for Provider Orders for Life

Sustaining Treatment– Translates your wishes regarding life-prolonging or

sustaining treatments into a doctor’s order

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Why is a POLST helpful?

• Emergency personnel must honor a POLST• All health care providers must honor a POLST• Emergency personnel are trained to look for it

on your refrigerator. – Also put copies with your health care directive– Post copies in your room– Give copies to your health care agent, family,

medical team and caretakers

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Part 3: Your Hopes and Wishes

• Take time with this section and attach a separate sheet of paper if you wish

• This information will help your health care agent and others decide what you would want if you can’t speak for yourself

• A gift to those who have the responsibility of making decisions for you

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ELCA Message on End-of-Life Decisions

• Available at http://download.elca.org/ELCA%20Resource%20Repository/End_Life_DecisionsSM.pdf (and in your folders)

• “Which decisions about dying are morally acceptable to concerned Christians, and which ones go beyond morally acceptable limits? Which medical practices and public policies allow for more humane treatment for those who are dying, and which ones open the door to abuse and the violation of human dignity?”

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ELCA Message on End of Life Decisions

• “Food and water are part of basic human care. Artificially-administered nutrition and hydration move beyond basic care to become medical treatment.” – Note, however, the Roman Catholic Church

teaches that tube-feeding is “natural” and therefore may not be withheld until it would actually cause harm (e.g., because the patient can no longer absorb food).

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ELCA Message onEnd-of-Life Decisions

• “Because competent patients are the prime decision-makers, they may refuse treatment recommended by health care professionals when they do not believe the benefits outweigh the risks and burdens. This is also the case for patients who are incompetent, but who have identified their wishes through advance directives, living wills, and/or conversation with family or designated surrogates.”

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ELCA Message onEnd-of-Life Decisions

• “As a church we affirm that deliberately destroying life created in the image of God is contrary to our Christian conscience.”

• “We oppose the legalization of physician-assisted death, which would allow the private killing of one person by another.”

• “[We] also recognize that responsible health care professionals struggle to choose the lesser evil in ambiguous borderline situations—for example, when pain becomes so unmanageable that life is indistinguishable from torture.”

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ELCA Message onEnd-of-Life Decisions

• “Communities of faith should, can, and often do provide holistic ministry to prepare people for end-of-life decisions. Pastors can help people to deal with their fears and hopes. Congregations can offer opportunities for conversation and deliberation about the end of life. They can invite hospital chaplains, hospice care-givers, social workers, attorneys, or others knowledgeable about advance directives to help them consider the topic’s many dimensions.”

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What Do Dying People Need?

• In The Four Things that Matter Most, Dr. Ira Brock offers four simple but profound solutions for healing our relationships and saying goodbye:– I love you– I forgive you– Please forgive me– Thank you

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What Do Dying People Need?

Dying people most often need opportunities to• Discuss their impending death

– Prognosis– Quality of life– Pain– Impact on loved ones (including pets)– Where? Home, hospice, other facility

• Explore spiritual dimensions• Discuss funeral arrangements• Provide directions regarding their estates, especially

treasured items

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From the Compassion Project

Dying people most often need time to• Reflect• Tell stories• Reaffirm their identity• Attend to unfinished business• Be with selected family and friends

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Next Steps

• Discuss your wishes and concerns regarding end-of-life care with your– Doctors and health care team– Health care agent– Family and loved ones– Caretakers

• Facilitators can help guide the conversation• Facilitators are available at no charge within

most healthcare systems

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Next Steps

• Complete and sign your health care directive appointing a health care agent– Go back to slides 8-10 for information about

signing your health care directive• Give a copy of your health care directive to– Your primary and alternate health care agents– Your doctors and health care providers– Members of your family and loved ones

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Next Steps

• Keep a copy of your health care directive where it can easily be found – preferably on your refrigerator

• Take a copy with you any time you are admitted to a health care facility and ask that it be placed in your medical record

• Keep track of who has copies• Destroy all previous health care directives • Review and update your directive as per slide #8

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Acknowledgements

Information on treatments for prolonging life (slides 17-29) adapted from handouts prepared and copyrighted by the Gunderson Lutheran Medical Foundation, Inc., distributed under license by the Twin Cities Medical Society