Advance Care Planning: Reclaiming Love & Faith in Times of - - PowerPoint PPT Presentation

Advance Care Planning:

Reclaiming Love & Faith in Times of Illness

Wake Forest Baptist Medical Center

• Rev. F. Keith Stirewalt PA MBA MDiv

Chaplain Advance Care Planning Coordinator Independent Living Donor Advocate Husband, Father, and Grandfather Ukulele Player, Trouble Maker

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Purpose of My Presence & Ministry

…create increased awareness of the importance of meaningful family conversations about illness and death before a medical crisis …help to emphasize these conversations and times of serious illness as Holy moments encountered in sacred space and sacred time

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Points to Ponder

• 70-80% of those surveyed want to die someplace other than the hospital
• Just because we can, should we?
• There are things worse than death
• There is no greater privilege than dying surrounded by those who love us…and

those we love

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Theology & Ministry Insights from the Pastorate, Chaplaincy & Clinical Medicine

• Most medical personnel are just as conflicted in the interaction of faith and serious

illness as the general public

• Lots of anecdotal (backed up by formal studies) evidence that those who describe

themselves as devout Christians:

• Struggle more with their deaths
• Utilize more futile health care
• Are late (if at all) adopters of hospice

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Thesis Statement:

We are too prone to interpret severe illness and death as a time of darkness where God moves away from us…rather than to recognize God’s light in the dark spaces

• f our life

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The ICU – Wrong Time/Wrong Place

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Moravian Traditions of Death – 1700s

• When death anticipated, person surrounded by their choir or immediate community
• Favorite scripture would be read, favorite hymns sung
• Kept as comfortable as possible
• Surrounded by those whom they love…and by those who loved them
• What have we lost?

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What Have We Lost?

• We have distanced ourselves from death
• We have treated illness and death as unnatural and contrary to our human nature
• We have failed to realize the sacred space and time that can and should be

present at the end of life…we fail to see and feel God’s presence during times of great sadness

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Darkness & Light – A Chaplain Clinician’s Focal Point

11If I say, “Surely the darkness shall cover me, and the light around me become night,” 12even the darkness is not dark to you; the night is bright as the day, for darkness is as light to you. Psalm 139:11-12 (NRSV)

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Two Theological Issues Encountered

• Illness is God’s punishment for something we or our parents did. “Rabbi, who

sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned;”

• “If I treat my body right and stay right with the Lord, I’ll never get sick”

(failure to understand the Deuteronomistic covenant, trying to cash a check that God did not write…)

Advance Care Planning:

• A plan/conversation indicating preferences for future healthcare in the event that a

person is unable to make or communicate health care decisions

• It’s about conversation and process
• When thoughtfully addressed, they are gifts of love and justice

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Advance Care Planning (ACP) – The Question

How do we want to be treated at a time when we are sick and will not recover…and have it done in a way that honors our story, our community, and our beliefs?

Conversation of Love:

• Relieves some of the burdens associated with making medical decisions for

someone they love

• ‘Conversations before the crisis’ give some measure of reassurance that loved
• nes are following the patients wishes, hopefully reducing some of the emotional

burden

Conversation of Justice

• Institutional Distrust
• Recognition
• Reconciliation
• Not everyone views the institution of health care as having their best interests.

Experimentation, grave robbing, and eugenics are but a few reasons for institutional distrust. Creating legal documents may help to alleviate suspicion and fear

Key Point

• As long as a patient is able to demonstrate Decision Making Capacity, he or she is

the sole spokesperson for the type of care that they want to receive (or want not to receive)

• Therefore, Advance Care Planning does not rob any capable patient of this

decision making authority

Medical Decision Making Capacity

Abilities needed for medical decision making capacity

• Ability to appreciate the nature of one’s situation and the consequences of one’s

choices

• Ability to understand the relevant information
• Ability to reason about the risks and benefits of potential options
• Ability to communicate a choice

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Common Barriers to Advance Care Planning – Patient’s Perspective

• “If my doctor brings it up, he/she is not telling me something!”
• “My doctor will tell me if I need one”
• “My doctor will think I am giving up on them”
• “I’m afraid to die and don’t want to talk about it”
• “I don’t want to be abandoned”
• “I don’t want to die in agony”

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Common Barriers to Advance Care Planning – Family’s Perspective

• “If we talk about it, it will happen”
• “I don’t want them to think I’m giving up on them”
• “I’m afraid God is punishing them…or me”
• “This is just another way for the hospital to save money”
• “I’m already grieving…I don’t want to discuss it”

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Common Barriers to Advance Care Planning – Clinician’s Perspective

• “ACP is only for last days of life”
• “ACP does not work & might complicate care”
• “ACP discussions will take too much of my time”
• “I’m here to cure people, not help them die”
• “ACP discussions have to be led by lawyers”
• “ACP discussions will make sick patients anxious, lose hope, and die sooner”

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Thoughts for us all…

• Would your loved ones know what is important to you if you became seriously ill

and had no chance of recovering? Are you sure?

• Would they be able to take their love for you, their knowledge of what you hold as

important, their knowledge of your relationship with God, and mold this knowledge into medical decisions honoring your choices for life and end-of-life?

• Who will be your voice? Who will speak for you?

Advance Directives:

• Legal documents providing potential medical decisions and/or designating decision

makers should the patient temporarily or permanently lack decision making capacity

• In our setting, these documents include:
• Health Care Power of Attorney (HCPoA)
• Living Will (Desire for a Natural Death)

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We need an advocate to speak for us, when we have lost our “voice” due to illness

• Beginning at the age of 18
• For those who are ill
• For those who are well
• At the least…a discussion with our loved ones
• Optimally…a formal document naming a health care agent…we choose our

advocate

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What is a Health Care Power of Attorney?

• A legal document naming a health care agent to make decisions for you when you

are not able to make those decisions for yourself

• ONLY goes into effect when you cannot make and transmit a decision
• Creates certainty as to the person who can make your medical decisions

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What can your health care agent do?

Make all health care decisions for you, including:

• Starting or stopping life-prolonging measures
• Decisions about mental health treatment
• Choosing your doctors and facilities
• Reviewing and sharing your medical information
• Autopsies, organ donation, and disposition of your body after death

The statutory list of Medical Decision Makers, in order of priority, is:

• Health Care Agent appointed in a Health Care Power of Attorney document
• Legal guardian of the person
• Attorney-in-fact appointed in a general durable power of attorney document that includes power to make health care decisions
• The patient’s legal spouse
• Majority of patient’s reasonably available parents and adult children
• Majority of patient’s reasonably available adult siblings
• An individual with an established relationship with the patient who is acting in good faith and can reliably convey the wishes of the

patient

• If there is no one in the hierarchy of representatives who is reasonably available, the attending physician may treat the patient

without consent, if there is confirmation from a second physician of the patient’s condition and the need for treatment

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Questions to ask ourselves when choosing a health care agent

• Who would I want to make decisions for me if I could not?
• What would I consider my goals for medical treatment if I permanently lost the

ability to meaningfully know who I am, who I am with, and where I am?

• How would I want my life experiences, values, and religious, personal, and cultural

views to inform and affect my medical treatment?

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YOU are best qualified to decide who speaks for YOU!

Attributes for your health care agent:

• Not automatically your spouse
• Keith’s Four A’s
• Affinity
• Access
• Assertiveness
• Acknowledgement

Affinity – Choose someone who knows and respects your values and who knows the things in life that bring you great joy…or great sorrow

Access Choose someone who can be reached in a timely manner. While being close by is preferable, the main need is for your agent to easily be reached by telephone

Assertiveness

The health care environment can be intimidating for many. Chose someone who can be assertive without being rude. According to Merriam Webster, assertiveness refers to being “disposed to or characterized by bold or confident statements and behavior”. Notice that I did not say “rude” There are two key components to this attribute…

Assertiveness with Medical Staff

The ability to speak for you to the medical staff, asking questions about proposed course of treatment including:

• What are the anticipated good/bad outcomes with the suggested

treatment?

• Good/bad outcomes with other treatments?
• Good/bad outcomes with no treatment?

Assertiveness with Family/Friends

The ability to speak for you even when

• ther family members might disagree
• n the course of action.

The ability to effectively communicate with family members during times of high stress and sadness

Acknowledgement

Choose someone who acknowledges their responsibilities when acting as your medical decision maker. Have them acknowledge that their role is to express and support your wishes even if (especially if) they are decisions that they themselves would not make for themselves

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God’s Light as Mercy to those in Darkness

Zechariah Speaks: 78”By the tender mercy of our God, the dawn from on high will break upon us, 79to give light to those who sit in darkness and in the shadow of death, to guide our feet into the way of peace.” Luke: 1:78-79 (NRSV)

Death – A Renewed Vision

“Dying is a spiritual event with medical implications.”

Rev Gwendolyn London DUKE Institute on care at the end of life

Living Will (LW) – Desire for Natural Death

In North Carolina, a living will lets you state your desire not to receive life-prolonging measures in any or all of the following situations:

• You have a condition that is incurable that will result in your death within a short

period of time

• You are unconscious, and your doctors are confident that you cannot regain

consciousness

• You have advanced dementia or other substantial and irreversible loss of mental

function

Life Prolonging Measures:

Care or treatment that only serves to postpone artificially the moment of death, including:

• Mechanical ventilation
• Dialysis
• Antibiotics
• Artificial nutrition and hydration

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Living Will – Desire for a Natural Death

Purpose – stated desire not to receive life-prolonging measures in specific conditions

• Cannot be cured and will result in death in a short period of time
• Unconscious…to a high degree of medical certainty will never wake up
• Advanced Dementia
• ONLY goes into effect when you cannot make and transmit a decision

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Living Will – Desire for Natural Death

• Option to receive artificial nutrition & hydration
• Lack of desire for food/water natural at end of life
• Not a denial of food/water for someone who wants to and can eat
• Be careful what you ask for…be careful what you promise
• The tie breaker – Living Will vs. health care agent

Other Types of ACP Documentation

Less preferable, but possibly contributory:

• Medical Decision Maker documented in patient’s chart (WFBMC only, per

admission)

• Personal note or letter expressing medical preferences when lacking medical

decision making capacity

• Clinical notation
• Conversation

Portable Orders - DNR

• Portable Do-Not-Resuscitate (portable-DNR)
• Physician order directs that cardiopulmonary resuscitation not be initiated in any

setting.

• NC statute shields health care providers from liability for honoring portable DNR
• rder in any setting
• No space for
• Patient/patient representative signature
• Review dates

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Medical Orders for Scope of Treatment (MOST) or POLST

• Expansion of portable DNR orders
• MOST form available from NC EMS office
• Designed to guide treatment for patients with advanced or progressive illness

(12 month question)

• MOST form must be signed and annually reviewed by:
• a physician, physician assistant, or nurse practitioner, and
• the patient or his/her representative

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• MOST form may include instructions re:
• CPR
• Other medical interventions (including hospitalization)
• Antibiotics
• Artificial nutrition and hydration
• Statutory immunity from liability (“legal safe harbor”) for health care providers who

honor MOST

Medical Orders for Scope of Treatment (MOST) or POLST

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An Advance Directive for North Carolina: A Practical Form for All Adults

• Developed by a multidisciplinary committee of experts
• Easier to explain, easier to understand
• Widely used throughout NC
• Cooperative effort by numerous health care organizations
• Opportunities for community efforts at education

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A Walk Through The Documents

• Written on seventh grade level
• Fairly easy to comprehend
• A document best executed after contemplation and conversation
• Must be notarized and witnessed
• Storage and copies
• All key potential decision makers must know and agree to their role…ahead of

time!

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What I want for you as religious leaders

• Broach the subject with your congregants
• Help them to explore their faith within the conversation context
• Ask them to be proactive in having ‘the conversation’ with their loved ones
• Share the word…spread the word that God is present in spaces of hurt and death

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What I want for you as individuals…

• Recognize that you have the right to be involved in present and future decisions

surrounding your health care

• Recognize that a health care power of attorney and living will are instruments to

help you…not an invitation for you to be ignored or have treatment that you don’t want

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What I want for you as individuals…

• Discuss your thoughts and questions with trusted persons
• Close family and support system
• Medical team
• Faith leader
• Attorney

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What I want for you as individuals…

• Choose someone to be your health care agent
• Think about completing a living will in accordance with your wishes
• Communicate your treatment wishes with those close to you
• Don’t put this off…don’t wait too late
• Review – reflect – act – review, repeat

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Help Me to Create an Environment:

• Where conversations about our goals for medical treatment occur before we get

sick

• Where these conversations are viewed as an act of love
• Where our goal is to carry what is important in our lives into the sacred spaces

where our earthly lives are coming to an end

• Where God’s love illuminates in and through us as we journey

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Where Death Will Be No More

3And I heard a loud voice from the throne saying, “See, the home of God is among

• mortals. He will dwell with them; they will be his peoples, and God himself will be

with them; 4he will wipe every tear from their eyes. Death will be no more; mourning and crying and pain will be no more, for the first things have passed away.” Revelation 21:3-4 (NRSV)

Questions and Answers