Transcript Living Well and Talking Truthfully at Life`s End — Walnut Hill

Living Well and Talking Truthfully at Life’s End
Rev. Joseph J. Kotva Jr. Ph.D.
[email protected]
http://endsight.org/index.php/audio-and-video/
 Romans 8:14-39
What then shall we say to this? If God is for us, who can be against us? He who did
not spare his own Son but handed him over for us all, how will he not also give us
everything else along with him? Who will bring a charge against God’s chosen ones? It
is God who acquits us. Who will condemn? It is Christ [Jesus] who died, rather, was
raised, who also is at the right hand of God, who indeed intercedes for us. What will
separate us from the love of Christ? Will anguish, or distress, or persecution, or
famine, or nakedness, or peril, or the sword? …. No, in all these things we conquer
overwhelmingly through him who loved us. For I am convinced that neither death,
nor life, nor angels, nor principalities, nor present things, nor future things, nor
powers, nor height, nor depth, nor any other creature will be able to separate us from
the love of God in Christ Jesus our Lord. (8:31-35, 37-39; NABRE)
Living Well and Talking Truthfully at Life’s End
• Agenda
• The case
• Ars moriendi tradition
• Resources for theological reflection on living/dying
well
• Resources for advance care planning
• The limits of CPR
• Choosing a healthcare agent
• Advance care planning discussions
• Physician Assisted Suicide
Eve was a fixture at Christ Church. She married and buried her husband there. She raised
her children there. For fifty years she sat in the same pew and joined with fellow members
in offering prayers of invocation, thanksgiving, confession, and petition. For fifty years she
looked at the stained glass windows of the Good Shepherd, Jesus blessing the children, and
the resurrected Christ welcoming all. For fifty years she sang hymns about God’s
providential care and listened to countless sermons about God’s grace and how we are to
respond with faith, hope, trust, and love. For most of those years she read the scriptures with her Sunday School
class while facing pictures of Christian martyrs.
At eighty-four years old, Eve elected to have major surgery despite her age and a significant chance that she
would not survive the operation. She chose surgery because her heart had become so bad that she could no
longer participate in the church and family activities that she loved.
Paul, Eve’s pastor, visited the night before surgery. They talked about her faithful life and the hope and risks of
surgery. Eve responded that God had been good to her and that matters were now in God’s hands, as they had
always been. They read Psalm 16 together: “Protect me, O God, for in you I take refuge.”
Although surgery went well, Eve’s recovery did not. She looked and felt good initially. But her heart would not
stay in sinus rhythm, her kidneys began to fail, and her lungs filled with fluid. Two weeks after surgery Eve was on
a respirator and maximum doses of heart and kidney medications. The doctor told the family that there was some
chance that Eve would recover and recommended starting dialysis. The family agreed.
At that point, Pastor Paul, who stayed with Eve and her family throughout the two weeks, intervened. Paul
pressed the doctor to explain to the family what “some chance” of recovery meant. The doctor responded that
Eve probably had a two or three percent chance of getting significantly better. Although chilled by this news, the
family was still inclined to start dialysis. Paul then gently suggested that continuing treatment seemed
inconsistent with Eve’s life and with the family’s own trust in God.
After prayerful consideration, Eve and her family decided against dialysis and asked for the respirator’s
removal. Christ Church was filled for Eve’s funeral service. The service itself was filled with tears and laughter—
the latter celebrating the well-lived life of one who trusted that we are in God’s hands.
The Case: Eve
• Discussing end-of-life cases apart from the totality
of a life narrative is distorting
• The story starts long before hospitalization and ends
after death
• The decisions to have surgery and then to stop
treatment only make sense in that larger narrative of
church and family
• The pastor’s role in the decision-making only makes
sense in that larger narrative faith and church
• We know how to evaluate Eve’s life, including these
particular medical decisions, in part because we have
hints about her funeral.
The Case: Eve
• Story illustrates that character, convictions, medical
decisions, and how-we-die are all intertwined
• Notice how close the story came to becoming a
different sort of story – one controlled by highly
medicalized assumptions.
• This narrative illustrates that congregations,
parishes, families, and pastors are already (for
good or for ill) part of end-of-life decisions.
The Case: Eve
• Eve’s decision to pursue surgery rested on
theological convictions about the purpose of life.
• Life is a good directed to God and others. Life is for
relationship to God and serving God through the church.
Life is for worship and for relating to and caring for
others.
• Eve’s health left her unable to participate in church or join
family activities.
• Decision for surgery aimed at getting well enough to
participate more fully in the purposes of life:
communal worship, relationships, service
The Case: Eve
• Families decision to discontinue treatment rested on
theological convictions about both relationship-fidelity
and death
• Honor your parents (which is very different from autonomy)
•
the family realized, with help, that denying death’s approach
was to dishonor their mother, her convictions and wishes,
and their shared faith
• Death is not the last word; there are things worse than
death; denying death can be a denial of faith in God.
•
Good Friday, Easter, the images of a resurrected Jesus and
the martyrs.
Medical Decisions Presume
Theological Convictions
•
•
•
•
Are we autonomous beings or interdependent?
What is the nature of justice?
Is life a personal project or a gift and a vocation?
Are we embodied selves or merely bodies or selves
trapped in bodies?
• Is our worth derived from social contribution or various
capacities or from being loved by God?
Medicine Reflects
Character/Virtues (or Vices)
• Eve’s Character – Hope, Truthfulness, Courage
• Hope is seen in the desire for healing and the serenity
with which she approached death
• Truthfulness is seen in her description of her current
life, its value and limits, and in the recognition that
surgery might fail.
• Courage is visible in the decision for surgery despite the
risks and in the decision to discontinue medical
intervention
Medical Decisions Reflect
Character/Virtues (or Vices)
• Harold’s Character – self-deception
• A life-long secretive smoker who developed lung and
circulatory problems
• Always thought he was getting better and would often
note, “I just don’t know what is wrong with me”
• Spent the last 6 months of his life, and much money
(private and public) in treatment programs with
marginal benefit.
Medical Decisions Reflect
Character/Virtues (or Vices)
• Harold’s Character – self-deception
• Never faced his impending death
• Never had those important conversations with
family/friends, never “got his house in order”
• Never confronted treatment as an option to be
declined
• Never considered hospice
Medical Decisions Reflect
Character/Virtues (or Vices)
• Eve and Harold
• Both long term members of Christ Church
• Both have same Christian “beliefs” about the world
• Yet the virtue of truthfulness was more rooted in Eve’s
character than in Harold’s
• This difference meant that they encountered their
deaths in VERY different ways
Good Medicine/Dying Well
Depends on the Virtues
• Courage
•
•
•
•
•
The Dr. who gives “bad news” and remains present to the
patient
The Dr. who refrains from unnecessary tests despite fears of
litigation
The nurse who challenges power structures or asks for an
ethics consult
The patient who asks for a second option
The patient who “owns” his or her own death
• Patience & imaginative listening
•
The nurse who “instinctively” knows that the patient did not
understand the Dr., despite all the affirming head-nods
The When/Where of Medical
Ethics and End-of-Life Matters
• Good medical decision making and good end-oflife decisions depend on theological convictions
and qualities of character
• Most of what needs to happen cannot wait until
people are looking for medical care or are facing
the end-of-life
Why did the story of Eve almost
become one of intensive medical
intervention?
• Authority of medicine/physicians (and the
assumptions still built into healthcare)
• No designated healthcare agent
• No meaningful conversations about values and
goals with that the agent(s)
The When/Where of Medical
Ethics and End-of-Life Matters
• We cannot separate end-of-life decisions from
our operative theological convictions or from
our virtues/vices.
• Cannot separate end-of-life decisions from how
we have lived or what we most basically believe
about the nature of reality.
• Cannot hope to die well apart from having lived
well.
Dying Well Depends on the Virtues:
The Ars Moriendi Tradition
• What makes a good death?
• Hooked up to machines under the florescent
lights of the ICU?
• The controlled death of physician assisted
suicide?
• Alone?
• At peace with God and others?
• Surrounded by family (biological or church)?
Dying Well Discussion
• Discuss
•
Discuss an experience you had with family or friends who
became seriously ill (such as end-stage cancer) or injured
(like in a bad car accident). What did you learn from that
experience?
•
Discuss an experience with family or friends whom you
would describe as having died well. What did you learn from
that experience?
The Ars Moriendi Tradition
• 15th Century texts on texts on dying well
•
Two versions
•
6 chapter “long” version, among the first books printed on movable
type. Translated into nearly all western languages. Widely Read.
(anonymous Dominican friar)
•
11 images with commentary, “short version” made from wood blocks.
•
Context is one in which death and social upheaval are very
present realities (e.g., shortly following the “black death”).
•
No assumption that dying is tied to old age.
The Ars Moriendi Tradition
• 16th and 17th Tradition works on dying well
•
Erasmus’s Preparing for Death
•
William Perkins’s (Puritan) Salve for a Sick Man (1595)
•
Jeremy Taylor’s (Anglican) Rule and Exercises of Holy Dying (1651)
The Ars Moriendi Tradition
The Ars Moriendi Tradition
Faith
The Ars Moriendi Tradition
Despair and Hope
The Ars Moriendi Tradition:
Virtues and Practices of Dying Well
15th Century
Temptations at Dying
→ The Virtues
•
•
•
•
•
•
Loss of Faith
Despair
Impatience
Pride
Avarice (tightfisted grasping at life)
Fear
→
→
→
→
→
→
Faith
Hope
Patient Love
Humility (focusing gaze on the God’s grace)
Serenity (generous letting go)
Courage
The Ars Moriendi Tradition:
Virtues and Practices of Dying Well
16th-17th Centuries
How to live all of life so as to be ready for death
• Faith
• active quality, known by its fruits, driven and directed by one’s
devotion to Christ (tied to love and God’s mercy)
• Hope
• especially as trusting in God’s mercy
• Compassion
• the capacity to “suffer wth,” leading to a renewal of faith
• Patient Obedience
The Ars Moriendi Tradition:
Virtues and Practices of Dying Well
Practices that form the virtues of dying well:
• Attending to/visiting/gathering around the dying
•
•
•
•
• (obligation for the entire community)
Presence at the death of others
Reflection on/remembrance of the saints
Mourning and lament
Prayer
The Ars Moriendi Tradition:
Virtues and Practices of Dying Well
Practices that form the virtues of dying well:
• Scripture Reading
• Continual Confession and Examine
• Gaining patience in suffering
• learning to interpret all of life’s suffering as connected with Christ’s
suffering
• Practices of Forgiveness
• “memento mori” – remembering one’s mortality
• constant remembrance of the uncertainty of one’s days and the
need to grow in Christian virtue
• What could be a larger contrast Western Societies implied
immortality?
A modern Ars Moriendi Tradition:
Virtues and Practices of Dying Well
What practices form:
•
•
•
•
•
•
•
•
Truthfulness/honesty
Patience
Humility
Courage
Joy
Hospitality
Generosity
Justice
A modern Ars Moriendi Tradition:
Virtues and Practices of Dying Well
If we are not learning now how to be people of faith,
hope, love, compassion, patience, truthfulness, humility,
courage, joy, hospitality, generosity, and justice, we will
not suddenly become those sorts of people at the end of
life
Resources
The Christian Reflection Project (Baylor University)
Christian Reflection: Death
Resources
Resources
Resources
Advanced Care Planning
It can be done
• La Crosse, Wisconsin: The Town That Loves Death
• 96% of People who die in La Crosse have done
advanced end-of-life planning (compared to a national
average of <50%)
• Death-planning (including end-of-life documents &
funeral planning are a regular part of social gatherings )
• Lowest healthcare costs of any region in the country
•
•
Gundersen Health System innovation
People who talk openly about death typically want less
aggressive end-of-life care
Advanced Planning:
Online Resources
• Caring Connections (National Hospice and Palliative Care
organization)
•
•
State Specific Directives
Ohio
• NIH: Planning for End-of-Life Care Decisions
• CDC: Give Peace of Mind: Advance Care Planning
• Free Living Will Kit
Advanced Planning:
Online Resources
• Hospice of Cincinnati: Advance Directives
•
•
•
•
Conversation Starter Kit
Links to Videos
Links to Advance Directives
Links to MOLST
Advanced Planning:
Online Resources
Conversations of a Lifetime
Advanced Planning:
MOLST
• Medical Orders for Life-Sustaining Treatment
• Designed to improve the quality of care patients
receive at the end of life by putting patient goals for
care and preferences into medical orders
• Because it is a medical order, more likely to be followed
• Remains Valid when transferred from one site of care to
another
• Appears that you can get MOLST if you are dying or
“frail”
Advanced Planning:
MOLST
• MOLST + DNR
Advanced Planning:
Resources: Five Wishes
• Sample
• Online
• To be fully legal in Indiana,
requires a notarized Healthcare
Agent Form
• Not legal in Ohio – use as a
planning and discussion guide
Advanced Planning:
Resources: Five Wishes
• The Person I Want to Make Health Care
Decisions for Me When I Can't
• The Kind of Medical Treatment I Want or Don’t
Want
• How Comfortable I Want to Be
• How I Want People to Treat Me
• What I Want My Loved Ones to Know
• Funeral Planning
The Truth about CPR
The Dirty Secret About CPR in the
Hospital (That Doctors Desperately
Want You to Know)
•
•
•
•
•
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Average success to leaving the hospital < 17%
Success with young healthily people, when started quickly 30%
Success with elderly nursing home residents < 3%
Success with ICU patients < 3%
Success with elderly, otherwise healthy, seniors < 18%
Success with oncology patients, less than < 2%
• If revived, risk of broken bones and brain damage
• On TV, around 70% are successful
Intensive End-Of-Life Care
On The Rise
• A July 2015 study in JAMA found that although there
was an increase in DPOA (designating an healthcare
agent) from 2000 to 2012, there also was a dramatic
increase in “‘all care possible’ at EOL” and “and rates
of terminal hospitalizations were unchanged.”
• Signing a form isn’t enough. We need sustained,
candid, repeated conversations about death and our
values.
Hospice
• Origins in Cicely Saunders’ Christian commitments to
the divinely given dignity of each person and to
human community. Focused on treating the whole
person, including symptoms and spirit and
community.
• The Institute of Medicine’s report “Dying in America”
confirms that hospice and palliative care are largely
successful managing systems
Hospice
Underutilized Set of Services
• 43.3% of Medicare decedents with a cancer
diagnosis accessed three or more days of
hospice care in 2007 (most recent data)
• 33.6% Medicare decedents with a dementia
diagnosis received three or more days of
hospice care in 2007
• It appears that less than ½ of patients who
would benefit from Hospice services receive
them.
Hospice
Underutilized Set of Services
• Nearly ½ of all those
receiving Hospice
services does so
only at the very end
of their life.
Choosing a Healthcare Agent
•
Accepts the role
•
An agent and at least one alternate
•
“Springing Power” – Only effective if/when the patient
is incapable of accepting or declining health care.
•
Willing and able to be your advocate even when you are
still able to make medical decisions
•
•
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Ask questions of clarification
Push for better pain management
Resist the inherent power of medical personal
Choosing a Healthcare Agent
• Is willing to have meaningful conversations about
goals, values, beliefs, preferences, and death
• Can make decisions in difficult moments
•
•
•
Because it is complicated and ambiguous
Because it is hard to let go
Because others might be resisting
• Follow your wishes
• Might not be a family member
Choosing a Time/Place for
Conversation
•
What place feels best to you?
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Care ride
Back porch
Kitchen table
The chapel
Living room fire
Timing?
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•
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Family events
A night out
Birthday
When you are feeling well
ACP
Questions to Ask
• When you think of what gives life its value,
what types of activities and relationships
immediately come to mind?
• How much medical treatment do you want–
ranging from antibiotics to chemo to dialysis to
assisted breathing – if you can likely continue
with at least two of those
actives/relationships?
ACP
Questions to Ask
• What does 'living well' mean to you? If you
were having a good day, what would happen
on that day? What would you do? Who would
you talk to?
ACP
Questions to Ask
• Discuss an experience you had with family or friends
who became seriously ill (such as end-stage cancer)
or injured (like in a bad car accident). What did you
learn from that experience?
• Discuss an experience with family or friends whom
you would describe as having died well. What did you
learn from that experience?
ACP
Questions to Ask
• What religious, spiritual, or other beliefs might
inform the kind and extent of care that you want or
do not want?
• For example, beliefs about an afterlife or about social justice
• Are there specific practices (such as praying or
singing or eating certain foods or reading certain
texts) that give you comfort?
• Is there a specific clergy person you trust and want
involved at a time of serious illness or death? (Or
perhaps, someone you would rather not have
involved.)
ACP
Questions to Ask
• How much physical harm – e.g., falls, broken bones,
hospitalization, death – are you willing to risk in order
to keep engaging in those life-giving activities and
relationships?
•
•
Do we prioritize safety over meaningful living?
Is it important to you to shovel the snow or cut the grass?
Is it important to you to travel? How much do you value
that family get together?
• How comfortable are you with accepting care from
others and with acknowledging neediness?
ACP
Questions to Ask
• How much do you fear death? How much do
you fear pain?
• What are your responsibilities and duties to
others and to society?
ACP
Questions to Ask
• How much do you fear death?
• How much do you fear pain?
• What are your responsibilities and duties to
others and to society?
ACP
Questions to Ask
• How much to do you want to be involved in
the decisions?
• Are there circumstances that you consider
worse than death?
• Are there milestones (like birthdays, weddings,
trips) you would like to meet if possible?
ACP
Addendum's
• No reason to be limited to the official forms. Put into
writing your preferences and commitments as a way
of providing testimony and guiding decision-making.
“Retirement”
Should it be a thing?
• The Bible doesn’t know anything of
retirement.
• There are always children to watch, meals to
prepare, people who need a visit or tutoring, etc.
Always ways to serve God and neighbor. Always
ways to show hospitality.
• One may end employment, but there is no end to
possible careers and vocations
“Retirement”
Should it be a thing?
• R. Paul Stevens argues that we should "work until we
die." (He doesn't mean employment.)
• Lots of scientific evidence that we stay healthier in
body and mind and live longer if we continue to take
on meaningful new challenges and find ways to
contribute to society.
•
NPR: Working Past Retirement Benefits Your Health, Study
Says
The Dying are
Still Morally Responsible
In Christian History and Theology, as in the Ars Moriendi tradition, being
at the last stages of life does not relieve one of moral responsibility
A martyr is one who witnesses to their faith even by their death
Even while dying, we can provide the service of allowing others to serve
us.
Even while dying, we can communicate the value of others by
expressing love and joy at the presence
Even while dying, we can call attention to brief moments of beauty or
grace
Physician Assisted Suicide
& Brittany Maynard
Brittany Lauren Maynard was an American woman with terminal
brain cancer who decided that she would end her own life
"when the time seemed right." She was an advocate for the
legalization of aid in dying.
Nov 01, 2014 · Portland, Oregon – just short of her 30th birth day
My right to death with dignity at 29
Physician Assisted Suicide
& Britney Marynard
• Not Typical
• Most are elderly (average age of 71)
• Most (slightly over 50%) are without a spouse
or partner
• In the U.S. (unlike the rest of the world), most
(slightly over 50%) are men
• Most (95%+) can have managed symptoms
Physician Assisted Suicide
• Main reasons for requesting
• Fear of loss of autonomy
• Fear of loss of dignity
• Fear of being a burden
• Not common: fear of pain (about 30% mention)
• Even less common: actual unmanaged pain
(about 1 in 15)
Physician Assisted Suicide
• Oregon, Vermont and Washington are currently
the only three states that have death-with-dignity
laws. Two other states, Montana and New
Mexico, have court rulings that protect physicians
who help patients die. Bills have been introduced
in many other states.
Physician Assisted Suicide
What are we talking about
• Suicide
• Assisted Suicide
• Physician Assisted Suicide
• What is driving the desire to medicalize
and sanitize suicide?
• (In Washington and Oregon, the same
demographic group that are killing
themselves with guns are requesting PAS)
Physician Assisted Suicide
What is wrong with this?
• Not Typical
• Should not make public policy on an atypical
case that hides the vulnerability of most facing
these choices.
• Not asking for suicide (which is easy) or assisted
suicide (which is rarely prosecuted) but for PAS -why?
• The example of the Netherlands
Physician Assisted Suicide
What is wrong with this?
• Intentions matter morally. They shape us. Big
difference between foreseeing death and aiming at
it.
• Laws shape behavior – dramatic increase in both
PAS and Suicide in Oregon
• PAS buys into the American myths of autonomy and
self-sufficiency
• Instead of challenging what is wrong with end-oflife care (why do people fear the specific things that
Physician Assisted Suicide
What is wrong with this?
• Instead of challenging what is wrong with end-oflife care (why do people fear the specific things that
they do), it offers to eliminate the people who
might suffer from that care.
• The logic of PAS is inherently expansive – why limit
this supposed good to only those who are dying or
only those who can request PAS/act on that
request?