Transcript Ethics and Decision Making

Onehospice
Ethics, Decision Making and
Dilemmas
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Objectives
• Learn the definitions of ethical principles
• Recognize that ethical issues are raised by virtually
every clinical decision
• Understand the value of a team approach in ethical
decision making with patient as primary focus
• Recognize that every clinical situation is unique and
presents unique choices between greater or lesser
goods or evils
• Develop an approach to decision making
• Develop approach to ethical dilemma
thanks to Dr .Ryan Liebscher, April 2010
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Definitions
• Morality – refers to a set of deeply held widely
shared and relatively stable values within a
community.
• Ethics – philosophical enterprise involving the
study of values and the justification for right and
good actions.
• Clinical ethics – the identification, analysis and
resolution of moral problems that arise in the
care of a particular patient.
thanks to Dr .Ryan Liebscher, April 2010
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Why?
• The principles of beneficence, non-maleficence,
autonomy and justice are the foundations of
ethical health care delivery – which should be
the way we consider all our actions and
decisions.
• The principles are usually balanced and weighed
in any clinical decision making.
thanks to Dr .Ryan Liebscher, April 2010
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Definitions
Beneficence –
• To prevent or remove evil or harm and do or
promote good.
Nonmaleficence –
• Do no harm – implies attention to burden vs
benefit before proceeding with treatment and
avoidance of futile treatment
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Definitions
Autonomy –
• Self determination or the moral right to choose
and follow ones own plan of life and action.
Requires informed consent and a capable
competent person.
Justice –
• Concept of fairness or what is deserved by
people.
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Definitions
• Informed consent – Willing acceptance of a
medical intervention by a patient after
adequate disclosure of the nature of the
intervention, its risks and benefits as well as
alternatives with their risks and benefits.
• Non abandonment – Do not leave patient
without care
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Definitions
Competency/Capacity
• The person can understand, reason, and evaluate the
consequences of the decision and communicate it.
• Matter of clinical judgment-no legal definition
• May fluctuate with time and patient may be
competent to make some decisions but not others.
• If patient is impaired must obtain consent from proxy
in accordance with local health and legal practices.
Usually defers to family members whom make
decision in keeping with known patient intentions.
thanks to Dr .Ryan Liebscher, April 2010
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Definitions
Incapacity –
Respect for value and dignity of others means
they must be protected from making
decisions that would:
1. result in harm
2. be different from decisions they would have
made if capable
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Definitions
• Truthful Disclosure –
• We have an ethical obligation to tell the truth
to patients about their diagnosis and its
treatment in a way that:
– Uses measured and sensitive disclosure which
respects autonomy
– Is in accordance with the hearer’s emotional
resilience and intellectual comprehension
– Reinforces the patients ability to deliberate and
choose but not to be overwhelmed
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Definitions – Truth Telling Cont’d
– Discuss matters that may be important in decision
making in keeping with patients wishes
– May ethically withhold truth if:
• There is compelling evidence that disclosure
will cause real and predictable harm
• Patient state a preference not to be told the
truth (often defer to family)
• Your own safety???????
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Definitions – Truth Telling Cont’d
• Common ethical dilemma
• Practically, if patient unaware of diagnosis/
prognosis they are unable to participate in decisions
and advanced care planning – ie., not based upon
reality.
• Can give rise to conspiracy of silence – prevents
patient and family from having any meaningful
sharing about feelings, worries, hopes.
• But must be culturally sensitive -> family meeting.
thanks to Dr .Ryan Liebscher, April 2010
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Definitions
• Paternalism –
- Overriding or ignoring people’s preferences
in order to benefit them or enhance their
welfare.
- Violates autonomy and is not beneficent but
is non-maleficent.
– A competent and informed person has the right
to refuse treatment.
thanks to Dr .Ryan Liebscher, April 2010
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Definitions
Futility –
• When treatment is incapable of attaining the
desired goal, it is not indicated. An
intervention is futile if it prolongs dying and
brings discomfort but no improvement.
• Health care team has no obligation to provide
futile treatment.
• Withdrawing and withholding treatment are
ethically and legally justifiable.
thanks to Dr .Ryan Liebscher, April 2010
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CPR at end of life in metastatic cancer
• Pts dying with metastatic cancer or multisystem
organ failure have near a 5-10% chance of
surviving CPR and almost no chance of leaving
hospital. Quality of life is not improved.
• Burdens of CPR
• -vegetative state 10%
• -neurological and functional impairment 25%
• -chest wall or intrathoracic trauma 25-50%
• -Indignity, suffering, cost
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CPR in this case: Is this futile?
• Yes or No
• What ethical principles are being respected or
compromised
– Non-malificence vs beneficence
– Non-malificence vs patient autonomy
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• Euthanasia
Definitions
– Goal of patient is death, patient has recruited
someone other than their physician to assist with
death.
• Physician assisted suicide
– Deliberate actions taken by a physician to terminate
the life of a patient by the patients request.
• Palliative sedation
– Legally and morally acceptable alternative to above
– If patient has refractory suffering, intentional sedation
is performed to relieve suffering.
– Many studies show
this
not
thanks to
Dr .Ryandoes
Liebscher, April
2010hasten death
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How do you Feel
• What do you think about Euthanasia and
physician assisted suicide?
• What ethical values are being respected or
compromised?
– Patient autonomy vs non-malificence
– Professional autonomy vs beneficence
– Beneficence vs non-malificence
thanks to Dr .Ryan Liebscher, April 2010
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Oregon Die with Dignity Act
• 1997, law to enact physician assisted suicide (PAS)
• Goal to respect autonomy, ? beneficence
• Specific criteria including meetings with 2
physicians over at least 2 weeks.
• Family input not needed but patient must be
competent
• Patient decides when lethal injection given.
• 0.3% of registrants underwent PAS – control
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Oregon Die with Dignity Act
•
•
•
•
•
•
•
•
Reasons for following through with PAS:
Losing autonomy
87%
Less able to enjoy
83%
Loss of dignity
80%
Loss of control of body function
59%
Burden on family
36%
Inadequate pain control
22%
Financial costs of treatment
3%
thanks to Dr .Ryan Liebscher, April 2010
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Ethics in Palliative Care
Foundations of ethical practice are:
• Effective Communication
• Interdisciplinary team
• Patient and goals/preferences/values as center
• Have an approach to decision making/dilemmas
thanks to Dr .Ryan Liebscher, April 2010
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Decision Making
• Moral duty to help with decision-making
• Patients want to know how treatments will
improve their quality or quantity of life and
whether they will achieve goals
• Explore what they want, fear, hope for and
value: Define goals of care.
• Place risks and benefits into context and
likelihood of treatment achieving desired
outcomes
thanks to Dr .Ryan Liebscher, April 2010
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Decision Making
 Decision-making is a process not a one time
event
 May need several meetings, this takes time.
 Multidisciplinary team involvement in these
meetings helps to convey information, discuss
alternatives, provide emotional and
psychological support and provide expertise.
 Team involvement also avoids giving ‘mixed
messages’.
thanks to Dr .Ryan Liebscher, April 2010
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Decision Making Approach
Example: Decision Making Matrix
thanks to Dr .Ryan Liebscher, April 2010
Decision Making Matrix*
*Jonsen, Siegler, Winslade
Clinical Ethics, Third Edition, 1992
Medical
Indications
Patient
Preferences
Quality
of Life
Contextual
Features
thanks to Dr .Ryan Liebscher, April 2010
Decision Making Matrix*
*Jonsen, Siegler, Winslade
Clinical Ethics, Third Edition, 1992
Medical
Indications
(Beneficence,
Nonmaleficence)
Patient
Preferences
(Autonomy)
Quality
Contextual
of Life
Features
(Utility, Futility) thanks to Dr .Ryan Liebscher, April(Justice)
2010
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Medical Indications
• Medical Condition (Diagnosis, Prognosis)
• Treatment
– Past and present
– Risks and benefits
• Pain and symptoms
• Past experience with the health care system
• Functional level
• Suffering
• Reversible component of illness
thanks to Dr .Ryan Liebscher, April 2010
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Patient Preferences
• Understanding of diagnosis and treatment
• Goals of treatment – curative, palliative - spectrum
• Goals for life
–
–
–
–
–
Physical
Psychological
Spiritual
Emotional
Social
• Understanding of end of life/palliative care
• How do you make decisions?
• Health care proxy,thanks
living
to Dr .Ryanwill
Liebscher, April 2010
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Quality of Life
• What does quality of life mean to you?
• What gives you meaning in life?
• Consider physical, social, psychological, and spiritual
issues.
• Are there circumstances under which you would
consider stopping all medication/treatment?
• What sustains you at present?
• What is achievable with regard to the patient’s
preferences?
• This will change with time.
thanks to Dr .Ryan Liebscher, April 2010
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Contextual Features
•
•
•
•
Terminal illness
Dying role vs sick role
Disposition: home, hospice, hospital
Available resources
–
–
–
–
Emotional
Physical
Fiscal/economic
Fairness and equality in distribution
• Who does what?
• Is everyone comfortable with this plan?
thanks to Dr .Ryan Liebscher, April 2010
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Ethical Decision Making
• Gather information using Decision Making
Matrix
• Have a family meeting with interdisciplinary
team.
thanks to Dr .Ryan Liebscher, April 2010
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9-Step Approach to Effective
Formal Communication
1.
2.
3.
4.
Start the meeting
Agree on purpose
What does patient/family know/understand?
What information is necessary for decisionmaking?
5. Share the information/respond to emotions
thanks to Dr .Ryan Liebscher, April 2010
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9-Step Approach to Effective
Formal Communication
6. Discover goals/hopes/expectations/fears:
“Values History”
7. Address their needs/empathy
8. Develop a plan
9. Follow up
thanks to Dr .Ryan Liebscher, April 2010
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Case 1
• Mr K 55 male with known Hepatitis C, presents
with severe back pain, leg weakness and is
diagnosed with acute spinal cord compression.
Neurosurgery consult and biopsy reveal
hepatocellular carcinoma. No functional recovery
in spite of steroids and radiation -> paraplegia.
ECOG 4, jaundiced in liver failure. 2 daughters
live abroad; his partner is by his side.
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Case Mr K Cont’d
• Post op day 7 develops decreased Level of
consciousness and dyspnea
• O/E – GCS: 10/13, HR 150 regular, RR 35, RML
bronchial breath sounds and wheeze.
• Assessment – sepsis from aspiration pneumonia.
• Plan?
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach
•
Gather information - Decision Making Matrix
1. What are his goals of care/preferences?
2. Medical information – prognosis, options, likely
outcome.
3. Quality of life – Is he suffering?
4. Contextual features – He is not competent. Has
he expressed future wishes? Who guides
decision making?
• Family Meeting
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Assessment
1. What are his goals of care/ preferences? His partner
of 10 years provides:
-
Does not want life prolonging therapy (previously stated)
Does not want to suffer
But had wished to see daughters before death
2. Medical information:
- Advanced hepatocellular carcinoma, not candidate for
further disease modifying therapy.
- SCC-> Paraplegia irreversible
- Septic – reversible?
thanks to Dr .Ryan Liebscher, April 2010
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Cont’d
3. Quality of Life –
-
Very upset at paralyzed status
Currently dyspneic, febrile, diaphoretic, restless.
Will treatment of sepsis restore his quality of life? Is this
reversible?
4. Contextual features –
-
It becomes evident that for him to see daughters is
extremely important.
They also feel they need to see their dad before he dies
– some complicated family issues.
The team has mixed feelings about what to do
thanks to Dr .Ryan Liebscher, April 2010
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• Family Meeting
Action
– The nurse makes a phone call to daughters, phone
placed to ear of father so they could tell him they
love him -> he looks as though he will die within
hours. They decide to leave that night for Canada.
– Decision with family and team to make sure we:
• keep him comfortable and
• aggressively treat sepsis with IV fluids, antibiotics in
hopes to prolong life so his daughters may make it to the
bedside.
thanks to Dr .Ryan Liebscher, April 2010
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Progress
Outcome Cont’d
• Over next hours GCS decreases to 7/13
• Patient comfortable on regular opioid dosed
every 4 hours with breakthrough for dyspnea.
Also receiving haloperidol for
agitation/delirium.
thanks to Dr .Ryan Liebscher, April 2010
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Outcome Cont’d
• Next morning patient is alert, GCS 13/13 with
good urine output, normalized vital signs.
• Daughters arrive that night.
• Have good visit, closure. Family very grateful.
• Patient stable alert for 10 days. Gradually
condition declines, agreement with patient,
daughters and partner to keep comfortable and
to provide end of life care.
• Dies peacefully 1 week later.
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Ethical Dilemma
• This can be very challenging
• Is a situation that requires a choice between
ethical options that are or seem equally
unfavorable or mutually exclusive
• This needs a formal process to determine how
to make the best decision
thanks to Dr .Ryan Liebscher, April 2010
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Ethical Dilemma
• Here there are pros and cons to each ethical
principle
• Our challenge is to recognize which clinical
options are “ethically acceptable” and then
ranking them to make a decision
• The team may have very different ideas
• This is not about the right answer or decision but
the best decision given the information available
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach to Ethical Dilemma*
1. Identify ethical question/dilemma
2. Gather necessary information
-
Medical
Social/Quality of life
Preferences
Contextual factors
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Case 1
• Mr K, 56 yr male with inoperable metastatic
gastric carcinoma and pulmonary metastases
presents with severe dyspnea. ECOG 4. Family
states they do not want him to know
prognosis.
• What is the approach?
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach to Ethical Dilemma
1. Identify ethical question/dilemma
2. Gather necessary information
-
Biological
Social/Quality of life
Preferences
Contextual factors
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach
1. Articulate/Identify ethical question/dilemma
Autonomy vs beneficence
Autonomy vs non malificence
Beneficence vs non malificence
Non malificence vs beneficence
Family rights vs patients rights vs team rights
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach to Ethical Dilemma
1. Identify ethical question/dilemma
2. Gather necessary information
-
Medical
Social/Quality of Life
Preferences
Contextual
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Gather Necessary Information
• Medical
–
–
–
–
–
Diagnosis and course of illness
Prognosis
Treatments available with risks/benefits
Status of the patient
Clinical judgment
Our case: No further disease modifying therapies,
approaching end of life, prognosis 1 week; patient is
more comfortable than on admission, has had some
good days;is competent.
thanks to Dr .Ryan Liebscher, April 2010
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Obtain Necessary Information
• Social
–
–
–
–
–
Ethical
Professional/Institutional
Legal
Cultural
Financial
Our case: Team feels ethical principles of autonomy and
beneficence are being compromised. Eldest son
spokesperson; family feel that patient will lose all hope if
told. Need to discuss with eldest brother whom has not
yet arrived.
thanks to Dr .Ryan Liebscher, April 2010
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Obtain Necessary Information
• Preferences and contextual factors
–
–
–
–
–
Patient wishes – past, current
Patient competence
Advanced directive; proxy decision maker
Family preferences
Health care team preferences
Our case: Competent. Will knowledge of dying influence
location of care – our patient oxygen dependant: No.
No known patient preferences although patient repeatedly
asked what he would like to know and if he had
questions.
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach to Ethical Dilemma
1. Identify ethical question/dilemma
2. Gather necessary information
-
Medical
Social/Quality of Life
Preferences
Contextual factors
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Analyze the Information and Generate
Options
• Analyze the information and generate options
In this case, could:
1. Tell
2. Not tell
3. Wait and tell later
4. Tell if asked
5. Provide bits of truth
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Analyze the Information and Generate
Options
• For each option generated, consider the
corresponding immediate, short and long
term consequences of deciding which ethical
value must be recommended.
• Be aware of one’s own bias’ and preferences
thanks to Dr .Ryan Liebscher, April 2010
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Approach to Ethical Dilemma
1. Identify ethical question/dilemma
2. Gather necessary information
-
Medical
Social
Preferences
Contextual factors
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
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Weigh risks/benefits and make
recommendation
• Weigh and balance the options to make an
ethical judgment on which one is best “What to
do”
• Why to do it?
– reasoned arguments invoking the balancing of
competing values, principles, and consequences
– Qualifiers - unique aspect of this particular case
which limits the ability to generalize
• If have option consider ethics consult if
necessary
thanks to Dr .Ryan Liebscher, April 2010
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Weigh risks/benefits and make recommendation
• Our case:
– What are the risks and benefits of telling to
patient. Not having closure, autonomy.
– What are the risks and benefits of telling to the
family. Trust, their autonomy as a culture/family.
– What are the risks and benefits of telling to the
team. Professional values, causing harm.
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach to Ethical Dilemma
1. Identify ethical question/dilemma
2. Gather necessary information
-
Medical
Social/Quality of Life
Preferences
Contextual
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Implement Recommendation
• Communicate effectively, Family meeting may be
necessary with other team members
Our case:
• Multiple meetings with sons and eldest son on
arrival. Explanations given.
• Meetings with interdisciplinary team – what
cultural factors are relevant.
thanks to Dr .Ryan Liebscher, April 2010
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Implement Recommendation
• The team recommended to eldest son to slowly
tell his father as per his wishes. This respects his
role and also achieves principle of autonomy for
patient with least harm and likely most benefit.
• The challenge is that the decision in a dilemma is
not known to be the correct one until the
outcome has occurred. Must learn from this.
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Approach to Ethical Dilemma
1. Identify ethical question/dilemma
2. Gather necessary information
-
Medical
Social
Preferences
Contextual factors
3. Analyze information and generate options
4. Weigh risks/benefits and prioritize arguments
and make recommendation
5. Implement recommendation
6. Provide follow up and evaluate the outcome
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
Provide follow up and evaluate the
outcome
Learn from the process
• Our case: Patient was gradually told of disease
progression and prognosis. His wife and close
family were able to come see him as he slowly
deteriorated.
• The day of his death he had seen the close family
and said he was tired. He had more dyspnea and
expressed that he had nothing left to do and
wanted the control of his dyspnea to be priority
even if it required him being sedated.
• He died that evening peacefully; his eldest son
closed his eyelids.
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
End of Life Care
British Journal of Cancer (2002), 86(10), 1540-1545:
• Cancer patient's unrelieved symptoms during the last
3 months of life increase the risk of long-term
psychological morbidity of the surviving partner
• Conclusion: Diagnosing and treating symptoms of
terminally ill cancer patients may not only improve
the patient’s quality of life but possibly also prevent
long-term psychological morbidity of their surviving
partners.
thanks to Dr .Ryan Liebscher, April 2010
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Oncology Nursing
• Learn to be comfortable with uncertainty
• Work with open heart
• Take care of yourselves too!
• Thank you for being nurses, what you offer is the
highest: a unique set of skills to facilitate the best
holistic care of the patient in a compassionate
manner. Never underestimate this.
thanks to Dr .Ryan Liebscher, April 2010
Onehospice
References
• Medical Care of the Dying 4th Edition. Downing,
M.M. (Ed.) Victoria Hospice Society. 2006
• Palliative Medicine, A case based manual 2nd
Edition. MacDonald, N., Oneschuk, D., Hagen,
N., and Doyle, D. (Ed.). Oxford University Press,
2005.
• *Dr. Manuel Borod, “Approach to Ethical
Dilemma”; Director, Division of Palliative Care,
McGill University Health Center.
thanks to Dr .Ryan Liebscher, April 2010