Onehospice thanks to Dr.Ryan Liebscher, April 2010 Ethics, Decision Making and Dilemmas.

thanks to Dr .Ryan Liebscher, April 2010

Onehospice

Ethics, Decision Making and Dilemmas


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


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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.


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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.


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DefinitionsBeneficence – • 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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DefinitionsAutonomy – • 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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DefinitionsCompetency/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.


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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 harm2. 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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• 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.

Definitions – Truth Telling Cont’d


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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.


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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.


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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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Definitions• Euthanasia

– 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 does not hasten 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


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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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• 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%

Oregon Die with Dignity Act


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Ethics in Palliative CareFoundations of ethical practice are:

• Effective Communication

• Interdisciplinary team

• Patient and goals/preferences/values as center

• Have an approach to decision making/dilemmas


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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


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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’.


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Decision Making Approach

Example: Decision Making Matrix


Decision Making Matrix**Jonsen, Siegler, Winslade

Clinical Ethics, Third Edition, 1992

Medical

Indications

Patient

Preferences

Quality

of Life

Contextual

Features


Decision Making Matrix**Jonsen, Siegler, Winslade

Clinical Ethics, Third Edition, 1992

Medical

Indications

(Beneficence, Nonmaleficence)

Patient

Preferences

(Autonomy)

Quality

of Life

(Utility, Futility)

Contextual

Features

(Justice)


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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


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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, living will


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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.


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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?


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Ethical Decision Making• Gather information using Decision Making

Matrix

• Have a family meeting with interdisciplinary team.


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1. Start the meeting2. Agree on purpose3. What does patient/family know/understand?4. What information is necessary for decision-

making?5. Share the information/respond to emotions

9-Step Approach to Effective Formal Communication


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6. Discover goals/hopes/expectations/fears: “Values History”

7. Address their needs/empathy8. Develop a plan9. Follow up

9-Step Approach to Effective Formal Communication


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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.


Onehospice

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?


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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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Assessment1. 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?


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Cont’d3. 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


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Action• Family Meeting

– 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.


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Outcome Cont’dProgress

• 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.


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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.


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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


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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


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Approach to Ethical Dilemma*1. Identify ethical question/dilemma2. Gather necessary information

- Medical- Social/Quality of life- Preferences- Contextual factors

3. Analyze information and generate options4. Weigh risks/benefits and prioritize

arguments and make recommendation5. Implement recommendation6. Provide follow up and evaluate the outcome


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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?


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Approach to Ethical Dilemma1. Identify ethical question/dilemma2. Gather necessary information

- Biological- Social/Quality of life- Preferences- Contextual factors

3. Analyze information and generate options4. Weigh risks/benefits and prioritize arguments

and make recommendation5. Implement recommendation6. Provide follow up and evaluate the outcome


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Approach1. 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


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- Medical- Social/Quality of Life- Preferences- Contextual




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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.


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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.


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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.


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- Medical- Social/Quality of Life- Preferences- Contextual factors




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Analyze the Information and Generate Options

• Analyze the information and generate options

In this case, could:1. Tell2. Not tell3. Wait and tell later4. Tell if asked5. 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


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- Medical- Social- Preferences- Contextual factors




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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


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• 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.

Weigh risks/benefits and make recommendation


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- Medical- Social/Quality of Life- Preferences- Contextual




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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.


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• 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.

Implement Recommendation


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- Medical- Social- Preferences- Contextual factors




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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.


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End of Life CareBritish 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.

63


Onehospice

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.


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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.

Onehospice thanks to Dr.Ryan Liebscher, April 2010 Ethics, Decision Making and Dilemmas.

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Transcript of Onehospice thanks to Dr.Ryan Liebscher, April 2010 Ethics, Decision Making and Dilemmas.