Transcript No Slide Title

Transforming Death into
Healing at the End of Life
A. Reed Thompson, M.D.
Associate Professor
Palliative Care Service
University of Arkansas for Medical Sciences
Central Arkansas Veterans Healthcare System
Al Henager, BCC, BCCC
Staff Chaplain
Coordinator of Palliative Care
University of Arkansas for Medical Sciences
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Likelihood of dying suddenly?
10% of Americans die suddenly
Which means 90% die over a longer period of time
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Healing at the End of Life
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Premise
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Just because a person is dying
It does not mean that there is nothing we can do
Actually, there is something we can do
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Healing at the End of Life
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Stopping cure-focused treatment does not stop
all treatment, there are still many things that we
should do for the patient.
People need a continuing relationship with their
healthcare providers more than ever during a
life-limiting illness.
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Healing at the End of Life
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The Elephant in the Room
Often, people avoid talking about the obvious
fact that the patient is dying
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Healing at the End of Life
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Discussing dying
Helping people to resolve issues, say goodbye,
achieve wishes, etc.
Addressing physical, social, spiritual, and existential
issues
Can and DOES bring Healing at the End of Life
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Palliative Care
Definition
Palliative Care is a broad term referring to an
interdisciplinary team approach to
comprehensive care that focuses on alleviating
and preventing suffering while enhancing the
quality of life of patients and their families
facing a serious, complex, chronic, or lifethreatening illness. It is not limited to persons
only at the end of life.
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Hospice
Definition
Hospice is a interdisciplinary program of
palliative and supportive services provided both
in the home and in institutional settings for
persons with weeks or months to live so that they
may live as fully and as comfortably as possible.
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Palliative Care vs. Hospice
Hospice
“Modern Medicine”
Palliative
Care
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Hospice
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Hospice is the “end piece” of Palliative Care.
Hospice is the most common means of providing
Palliative Care at the End of Life.
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Definition
Healed
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Cured or restored to health
Made hale, sound, or whole
Restored to original purity
Webster’s New Collegiate Dictionary
There are many types of healing
- Physical
- Emotional
- Spiritual
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Healing at EOL
Multiple domains
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Medical
Social
Spiritual
Existential
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Medical Domain
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Physician supervises care
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Nurses assess and implement physicians’
recommendations
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Symptoms at EOL – Medical
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Pain
Weight loss
Anorexia
Dyspnea
Constipation
Fatigue
Weakness
Nausea
89%
58%
55%
41%
40%
40%
36%
32%
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Depression
Insomnia
Cough
Vomiting
Dizziness 16%
Confusion 11%
Bloating
Edema
31%
28%
28%
23%
11%
11%
J Palliative Care, 7:23-9; 1991
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Social Domain
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Setting/Venues
Advance directives
Money
Services/Advocacy
Counseling patient/family
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Spiritual Domain
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Life review
Spiritual screening tools
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FICA
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Faith
Importance
Community
Address this in care
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FICA
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FICA Source: Christina Puchalski, M. D.
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Pulchalski, C. and D. B. Larson. “Developing curricula
in spirituality and medicine.” Journal of Academic
Medicine 1998; 73: 970-4.
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FICA
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F – Faith
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Broad questions:
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“What do you believe in that gives meaning to your life?”
“Do you consider yourself to be a religious or spiritual person?”
“What is your faith or belief?”
Both “spiritual” & “religious” is used
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Some may be comfortable with one
Some may be offended by the other
A “Yes” should prompt a discussion of what that means to them
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FICA
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I – Importance
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Questions:
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“How important is your faith (or beliefs) to you?”
“How is it important to you?”
“What is your faith or belief?”
Being “spiritual” & “religious” means little
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Example: “I am Catholic and my faith important.”
“However, I have not been to Mass for 10 years.”
“I go to Mass daily, except when I am too sick.”
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FICA
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C – Community
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Questions:
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“Are you a part of a religious or spiritual community?”
“Is there a group of people you really love and who give you
support?”
“How is this community of support to you?”
Communities such as churches, temples, synagogues or masjids
can serve as a strong support system for some patients.
For others family and friends are their major support systems.
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FICA
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A – Address in Care
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Questions:
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“How would you like me, your healthcare provider, to address this
in your healthcare?”
“How might these things apply to your current health situation?”
“How can we assist in your spiritual care?”
Communities such as churches, temples, synagogues or masjids
can serve as a strong support system for some patients.
For others family and friends are their major support systems.
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Symptoms at EOL – Spiritual/Psychosocial
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Withdrawal from surroundings
Decreased interest in food & water
Decreased socialization
Vision-like experiences
Unusual, out-of-character
communications
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Existential Domain
Finding meaning in the suffering
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Open-ended questions
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What are the most important things in your life right now?
What does all this mean to you?
Listening
Presence
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Jungian Mind Model
Surface
Deep
Objective,
Analytical,
Linear, left brain
Ego driven
Subjective, intuitive,
Unconscious driven
Serpentine,
Right brain
Medical
Spiritual
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The Chaplain’s Approach
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Be Pastoral
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Be present
Have an open agenda & be sensitive to resistance
Listen
Ask Open Ended Questions
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What does the doctor say?
What is your understanding of your disease?
What is your understanding of how the future of your
disease looks?
What is your understanding of what will happen next?
What do you hope will happen from here?
Let them tell you!
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Documentation
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Chart the conversation
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What is patient/family’s understanding of
the disease?
What is patient/family’s understanding of
prognosis?
What is patient/family’s desires, hopes,
wishes?
What does patient/family’s need to do?
If appropriate, suggest a Palliative
Care Consult or family conference
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Suggesting a Palliative Care Consult or
Family Conference
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Be sure it is appropriate
The patient is nearing the end of life
And/or patient/family desires comfort care
And/or patient/family express uncontrolled or
difficult to manage symptoms
When goals of care have changed
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Suggesting a Palliative Care Consult
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Remember, you should suggest a consult or
family conference
Chart the conversation
At the end of the note, write something like:
“Given that the patient/family’s understanding is that the
patient is nearing the end of life, and given that they
desire comfort care, would a Palliative Care Consult
[or family conference] be helpful to you in this
situation?”
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Suggesting a Family Conference
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Remember, you should suggest a
family meeting
Work with the team
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Case manager
Social worker
Nurse
Physician/attending medical team
A family meeting is a “shot across
the bow”
“Given that the patient/family seem confused about goals
of care, would a family meeting be helpful in this
situation?”
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End of Life Terminology
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DNR – Do Not Resuscitate
DNI – Do Not Intubate
Chem Code – Use of Chemical
Resuscitation Only
Comfort Care – A category of care where
aggressive/curative treatments are no
longer being sought, and the goals of care
have changed to comfort measures
Advance Directives
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Advance Directives
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Living Will
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Durable Power of Attorney for Health
Care
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An advance statement about what the patient does or does not
want done under certain circumstances
Terminally ill
Permanently unconscious
Cannot speak for one’s self
If a person cannot make health care decisions for self, designates
a person to do so for patient (varies from state to state)
Health Care Proxy
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If a person cannot make end of life decisions for self, the
designated person who has legal authority to do so for patient.
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Health Care Proxy
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In Arkansas
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Health Care Power of Attorney and Health Care Proxy are
different, but can be same person on same document
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Must state this specifically
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“This document is intended to be a durable power of attorney
under A.C.A. 20-13-104 and a declaration and proxy statement
under the Rights of the Terminally Ill or Permanently
Unconscious Act.”
Default Health Care Proxy (varies from state to state)
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Legal Guardian
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Parents (if minor)
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Spouse
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Majority of Adult Children
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Parent(s) (if an adult)
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Majority of Adult Siblings
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Advance Directives
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Often, the best way to lead into discussion of
EOL issues is to ask about Advance Directives
It is helpful to put it the following way:
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We may not be to this point now . . .
However, one of the things I ask all of my patients is:
“If something were to happen and you could not speak for
yourself in order to give instructions about what treatment you
would want, who would you want to speak for you?”
Does that person know that?
Do you have that in writing?
Does that person know your wishes?
Are your wishes written down?
Would you like help in getting that documented?
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Advance Directives
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Then you might ask about DNR
It is helpful to ask in this way:
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Again we hope we don’t get to this point, but . . .
Let me ask you. . .
If your heart were to suddenly stop beating, what
would you want done?
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Pastoral Issues
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Life review
Spiritual/pastoral assessment
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AIO
Living Water
Spirit
Rush 7 X 7 Model
Sacraments/rituals
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Pastoral Issues
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Issues of Theodicy
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Unfinished Business
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Where is God in this?
What is the meaning of my suffering?
Conflicted relationships
Issues of reconciliation
Issues of forgiveness
Practical Issues
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Planning of funeral
Making will
Advance Directives
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Pastoral Issues
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Once EOL is acknowledged
Way Is Clear to Deal with Unfinished
Business & Practical Issues
Often, it is helpful to ask:
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Are there things you would like to see happen
before you die?
What things would you like to accomplish in
the time you have left?
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Healing at the End of Life
The Chaplain’s Role
What does it mean to you?
What is your role?
Questions?
Comments?
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