Transcript No Slide Title

Palliative Therapy: Before and
at End of life
Phil Watson, D.O., F.A.C.O.I.,
F.A.C.C., F.A.C.C.P.
DISCLOSURES:
I have nothing to disclose.
Objectives
1. Discuss the Existence of the SubSpecialty Palliative Therapy Before and
at the End of Life
2. Explain POLST – Physician Orders for
Life-Sustaining Therapy
How Americans Die: A Century of Change
1900
2000
Age of Death
46 years
78 years
Top Causes
Infection
Accident
Children
Cancer
Organ System Failure
Stroke/Dementia
Disability
Not Much
2-4 years before death
Financing
Private
Modest
Public & Substantial
Lawsuit
Non
Frequent
Patient/Doctor
Relationship
Paternal
Autonomy
Continuity of Care
Continuous
Fragmented
Hospitalist
DJDJD
I
Our Constitution upholds the
right to life, liberty and the
pursuit of happiness
Death is not there
Public Perception
POLITICS
HR 3200, Section 1233
• Intent was to get people NOT critically ill
to think about and choose the treatment
they would want at end of life
• Provision would allow health care
providers to receive payment from
Medicare for counseling with patients on
end of life issues
• Supported by AMA, AOA, AARP,
National Hospice and Palliative Care
Organization
Critical Dimensions of Humanistic
Care
• Competence
– Medical, palliative care
– Ethical
– Cultural
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Communication skills
Empathic imagination
Self –awareness
Healing
Partnership
Nonabandonment
Five Critical Elements of Medical
Partnerships
• Sharing power and expertise
• Mutually influencing and understanding
one another
• Clarifying commonness and differences
• Negotiating differences
• Ultimately patient-centered
Clarifying Commonness and Differences:
Potential Dimensions of Conflict
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Diagnosis and prognosis
Goals of treatment
Goal in life
Methods of treatment
Conditions of treatment
Relationship
Psychological and emotional factors
Spirituality and religion
Negotiation of Differences
• Listen and learn about each other’s
position
• Separate the person from the problem
• Invent solutions of mutual gain
• Call in a third party
• Take a “time-out”
• Give in on nonessential areas
• Explore the likely effects of each choice
• Know your bottom line
Initial Steps in Delivering Bad News
• Greet and calibrate
• Find out how much the patient knows
• Find out how much the patient wants to
know
• Share information tailored to the
individual
• Respond to the patient’s feelings
• Make a plan and follow through
Desired Outcomes of Early Meetings
1.
2.
3.
4.
Minimize aloneness and isolation
Achieve a common perception of the problem
Address basic information needs
Address immediate medical risks, including
risk of suicide
5. Respond to immediate discomforts
6. Ensure a basic plan for follow-up
7. Anticipate what has not been talked about
Coping Responses to Bad News
CATEGORY
EXAMPLES
Basic psychophysiologic
Fight-flight
Conservation-withdrawal
Cognitive
Denial
Disbelief
Blame
Acceptance
Intellectualization
Affective
Anger
Shame
Fear
Relief
Anxiety
Guilt
Helplessness Hopelessness
Clinical Indications for Discussing
Palliative Care
ABSOLUTE INDICATIONS
Patients fear future suffering
Patients or family members ask about hospice
Patients are imminently dying
Patients talk about wanting to die
Severe suffering and a poor prognosis
POTENTIAL INDICATIONS WITH
SEVERELY ILL PTS
When discussing the patient’s hopes and fears
When discussing prognosis
Would you be surprised if the patient died in the
next 24 months?
Potentially Useful Open-Ended
Questions about End-of-Life Care
“What concerns you most about your illness?”
“How is treatment going for you and your family?”
“As you think about your illness, what is the best and
the worst that might happen?”
“What has been most difficult about this illness for
you?
“What are your hopes (your expectations, your fears)
for the future?
“As you think about the future, what is most important
to you (what matters the most to you)?”
Potentially Useful Questions about
Spiritual and Existential Issues
“Is faith (religion, spirituality) important to you?”
“Would you like to explore religious matters with someone?”
“What do you still want to accomplish during your life?”
“What thoughts have you had about why you got this illness
at this time?”
“What might be left undone if you were to die today?
“What is your understanding of what happens after you
die?”
“Given that your time is limited, what legacy do you want to
leave your family?”
“What do you want your children and grandchildren to
remember about you?”
Some Difficult Questions
“How long do I have?”
“What would you do in my shoes?”
“Should I try experimental (or complementary)
therapy?”
“Should I go to a “medical mecca” for treatment
or a second opinion?”
“Will you work with me all the way through to
my death, no matter what happens?”
“If my suffering gets really bad, will you help me
die?”
Steps to Providing Palliative Care to
Patients Who Lack Decision-Making
1. Identify the main participants in the decision
making.
2. Allow the participants to narrate how the patient has
come to this state of illness (or, in cases where the
physician has had an extended relationship with the
patient and family).
3. Teach the decision makers about the expected clinical
course of the patient’s disease.
4. Advocate for the patient’s quality of life and dignity.
5. Provide guidance on the basis of existing data and
clinical experience.
Potential Benefits and Burdens of Feeding Tubes in
Patients with Severe Dementia Who Have Trouble
Swallowing
BENEFITS
BURDENS
Biomedical
Improve hydration
Improve nutrition
Careful monitoring of metabolic
state
Potential to prolong life
Psychosocial
Do “everything possible” to
prolong life
Provide basic sense of care and
feeding
Prevent perception of
“starvation”
Make feeding quick and efficient
Biomedical
Monitoring of metabolic status
Maintenance of tube
Primary focus on technical care
Potential to prolong the dying
process
Psychosocial
Potential to prolong poor quality of
life
Focus on technical aspects of care
Lose smell and taste of real food
Lose human contact of feeding
Levels of Responding to Emotion
RESPONSE
• Acknowledge
• Legitimize
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• Explore
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• Empathize
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ILLUSTRATIVE
QUESTION
“I can see you find this distressing.”
“You seem very sad today.”
“Anyone in your shoes would be
upset.”
“It seems only natural to be angry
about the way things turned out.”
“What is the most distressing part?”
“Tell me more about what is making
you angry (sad, nervous, upset).”
“That sounds terrifying.”
“I imagine I would feel
overwhelmed too.”
The Rule of Double Effect: Four Key
Elements
1. The act must be good or at least morally
neutral.
2. The agent must intend the good effect
and not the evil effect (which may be
“foreseen” but not intended).
3. The evil effect must not be the means to
the good effect.
4. There must be a “proportionately grave
reason” to risk the evil effect.
Potential Palliative Options of Last Resort
Legal Acceptability: Ethical Consensus: Standards of
Practice
Intensive pain and symptom management
Not starting or stopping potentially life-sustaining
therapy
Legal Acceptability: Growing Ethical Consensus
Voluntarily stopping eating and drinking (VSED)
Terminal sedation (TS) Palliative sedation
Ethical controversy: Legally Prohibited in Most
States
Physician-assisted suicide (PAS)
Voluntary active euthanasia (VAE)
Safeguards for Last Resort Practices
PATIENTS WITH DECISION-MAKING
CAPACITY
1.Effective palliative care
2.Intolerable suffering: proportionately severe
to warrant life-ending intervention
3.Fully informed consent about condition,
prognosis, and options
4.Diagnostic and prognostic clarity
5.Independent second opinion(s)
6.Clear documentation and review
Safeguards for Last Resort Practices
PATIENTS WITHOUT DECISION-MAKING CAPACITY
1. Effective palliative care
2. Intolerable suffering: proportionately severe to warrant lifeending intervention
3. Patient clearly incapable of informed consent; person
designated to represent the patient according to the following
hierarchy:
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A formally designated health care proxy, or statements in a living
will
Close family members using the principle of “substituted
judgment”
Close family members representing the patient’s “best interests”
A court-appointed guardian only if the options above fail to
represent the patient
4. Diagnostic and prognostic clarity
5. Independent second opinion(s)
6. Clear documentation and review
Potential Guidelines for Terminal Sedation and
Voluntary Stopping of Eating and Drinking
Voluntary Stopping of
Guideline Domain Terminal Sedation
Eating and Drinking
Palliative Care
Must be available, in place, and
unable to relieve current suffering
adequately
Must be available, in place, and
unable to relieve current
adequately
Usual Patient
Characteristics
1) Severe, immediate, otherwise
unrelievable symptoms: (e.g. pain,
shortness of breath, nausea,
vomiting, seizures, delirium)
Persistent, unrelenting, otherwise
unrelievable symptoms unacceptable to the patient: (e.g. extreme
fatigue, weakness, debility)
2) Can be used to prevent severe
suffering: (e.g. to prevent suffocation
sensation when discontinuing
mechanical ventilation)
Potential Guidelines for Terminal Sedation and
Voluntary Stopping of Eating and Drinking
Guideline Domain Terminal Sedation
Voluntary Stopping of
Eating and Drinking
Terminal Prognosis
Usually weeks to months
Patient Informed
Consent
Usually days to weeks
Patient competent, fully
Patient competent, fully
informed; noncompetent with
informed
severe, otherwise irreversible
suffering (use advance directive,
and/or consensus about patient
wishes and best interests)
Family Participation Strongly encourage input from Strongly encourage input from
In Decision
and consensus of immediate
and consensus of immediate
family members
family members
Potential Guidelines for Terminal Sedation and
Voluntary Stopping of Eating and Drinking
Guideline Domain
Voluntary Stopping of
Terminal Sedation Eating and Drinking
Family Participation Strongly encourage input from Strongly encourage input from
In Decision
and consensus of immediate
and consensus of immediate
family members
family members
Incompetent Patient Available for indications of severe, Food and drink (oral food and
persistent suffering with the
fluids) must not be withheld
informed consent of the patient’s from incompetent persons
designated proxy, family memwilling and able to eat
bers. If no surrogate available,
consensus from team members
and consultants that no other
acceptable palliative responses
are available
Potential Guidelines for Terminal Sedation and
Voluntary Stopping of Eating and Drinking
Guideline Domain Terminal Sedation
Voluntary Stopping of
Eating and Drinking
Second Opinion(s)
Expert in palliative care
Mental health expert (if
uncertainty about mental
capacity)
Expert in palliative care
Mental health expert
Specialist in the patient’s
underlying disease (strongly
advised)
Medial Staff
Participation in
Decision
Input from staff involved in
immediate patient care activities
encouraged; physician and staff
consent for their own participation required
Input from staff involved in
immediate patient care activities
encouraged; physician and staff
consent for their own participation required
Legal requirements for physicianassisted suicide in Oregon
General Patient Requirements for Making a Legal Request
Adult 18 year or older
Resident of Oregon
Mentally capable of making health care decisions
Terminal illness (lead to death within 6 months)
Procedural requirements for Responding to Legal Requests
Patient provides
• Two verbal requests separated by at least 15 days
• Written, witnessed request
Prescribing physician and consulting physician must
• Confirm diagnosis and prognosis
• Determine the patient’s mental capacity
• Arrange for psychological examination if doubt about capacity
Prescribing physician must
• Inform patient about alternatives (hospice, pain control)
• Request (but not require) that next of kin be notified
What is POLST?
 A physician order recognized throughout
the medical system.
 Portable document that transfers with
the patient.
 Brightly colored, standardized form for
entire state of CA.
Who Needs POLST?
 Chronic, progressive illness
 Serious health condition
 Medically frail
 Tool for determination
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“You wouldn’t be surprised if this patient
died within the next year.”
National POLST Paradigm
Programs
Endorsed
*As of January
Developing
Programs Programs
2011 of POLST Paradigm Program
Designation
No Program (Contacts)
status based on information available by the
program to the Task Force.
CA POLST Form – Front Side
Section A: CPR
Section B: Medical
Interventions
Section C: Artificial Nutrition
Diagram of POLST Medical
Interventions
CPR
DNR
Comfort Measures
Limited Interventions
Full Treatment*
*Consider time/prognosis factors under “Full Treatment”
“Defined trial period. Do not keep on prolonged life
support.”
Section D: Information and
Signatures