Transcript Slide 1

Isn’t It Time We Talked?
Communicating With Patients With
Serious Illness
R. Sean Morrison, MD
Director, National Palliative Care Research Center
Hermann Merkin Professor of Palliative Care
Professor, Geriatrics and Medicine
Vice-Chair for Research
Brookdale Department of Geriatrics & Adult Development
Mount Sinai School of Medicine
New York, NY
[email protected]
www.nprc.org
What Do Patients With
Serious Illness Want?
• Pain and symptom control
• Avoid inappropriate prolongation of the dying
process
• Achieve a sense of control
• Relieve burdens on family
• Strengthen relationships with loved ones
Singer et al, JAMA, 1999
The Role of The Health
Care Professional
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To plan for the future - the when, not if
To communicate bad news
To establish goals of care
To provide treatments that meet these goals
– Life prolonging and curative care
– Pain and symptom management
– Psychological, emotional, spiritual support
• To withdraw treatments that no longer meet these goals
• To negotiate conflict around treatments and goals of
care
Advance Care Planning
• Worried well
Self-resolving illness
Low grade acute illness
• Chronic diseases
Moderate to severe acute illness
• Serious and Life Threatening
Illness
Significant diagnosis
Multiple co-morbidities
High risk for death
•Actively dying
Advance Care
Planning
Advance Care Planning:
A Five Step Approach
• Introduce the topic
– Make it routine
• “This is something that I discuss with all of my
patients. I’d like to discuss it with you.”
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Engage in structured discussions
Document patient preferences
Review, update
Apply directives when need arises
Engage In A Structured
Discussion
• Insure proxy decision makers are present (if
possible)
• Elicit important values.
– “What makes life worth living to you?”
– “Tell me about situations under which life would be
intolerable or not worth living?”
– “Who do you trust to make decisions on your behalf?
• Describe scenarios and elicit preferences
– Don’t focus on specific interventions
• Describe role of the proxy
Advance Care Planning:
A Five Step Approach
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Introduce the topic
Engage in structured discussions
Document patient preferences
Review, update
Apply directives when need arises
Common Pitfalls
• Failure to plan
• Proxy absent for discussions, unaware of
role
• Unclear patient preferences
• Focus too narrow and technology-focused
• Making assumptions about what does and
does not constitute an acceptable quality
of life to the patient
Establishing Goals For
Medical Care
• Worried well
Self-resolving illness
Low grade acute illness
• Chronic diseases
Moderate to severe acute illness
• Serious and Life Threatening
Illness
Significant diagnosis
Multiple co-morbidities
High risk for death
•Actively dying
Establishing
Goals of Care
Goals of Care
• Every one has a personal sense of
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Who we are
What we like to do
The control we like to have
The goals for our lives
The things we hope for
• Hope, goals, expectations change with illness
• Physician’s role to clarify goals, treatment plan
Potential Goals of Care
• Cure of disease
• Avoidance of
premature death
• Maintenance or
improvement in
function
• Prolongation of life
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Relief of suffering
Quality of life
Staying in control
A good death
Support for families
and loved ones
Objectives of Establishing
Goals of Medical Care
• Communication of prognosis and its
uncertainty
• Identify attainable and appropriate goals
• Set limits on unreasonable/unattainable
goals
• Identify appropriate goals of medical care
when patients lack capacity
8-Step Protocol For
Negotiating Goals of Care
• Create the right setting
• Determine what the patient and family
know
• Ask how much they want to know and
discuss with you
• Explore what they are expecting or hoping
to accomplish
8-Step Protocol For
Negotiating Goals of Care
• Suggest realistic goals
– false hope may deflect from other important
issues
– true clinical skill is required to help patients
and families find and maintain hope for
achieving realistic goals
• Respond empathetically
• Make a plan and follow-through
• Review goals when condition changes
Communicating Prognosis
• Physicians consistently markedly overestimate prognosis
• It is important to be accurate
– Allows patients/families to cope and plan
– Gives time and opportunity to accomplish
critical life goals (financial, emotional)
– Increases access to hospice, other services
• But it’s ok to hedge
– Offer a range or average for life expectancy
Language With Unintended
Consequences
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Do you want us to do everything possible?
Will you agree to discontinue care?
It’s time we talk about pulling back.
I think we should stop aggressive therapies.
I’m going to make it so that he won’t suffer.
There’s nothing more that we can do for
him.
Alternative Language to Describe
The Goals of Care
• I will give you the best care possible
• We will concentrate on getting you home with your family
and make sure you get whatever help you need to
achieve that goal
• We want to help you live as fully and as meaningfully as
possible in the time that you have
• I will continue all treatments that will help maximize your
comfort and your ability to function for as long as
possible in the face of this illness
• I will focus my efforts on treating your symptoms
When We Cannot Support
a Patient’s Choices
• Typically occurs when goals are
unreasonable, unattainable, or illegal
• Set limits without implication of abandonment
• Make the conflict explicit
– “We disagree on the benefit of continuing the ventilator.
What are you hoping that we can accomplish for your
father by leaving him on the machine?”
• Try to find an alternate solution
Withholding/Withdrawing
Life Sustaining Treatments
• Worried well
Self-resolving illness
Low grade acute illness
• Chronic diseases
Moderate to severe acute illness
• Serious and Life Threatening
Illness
Significant diagnosis
Multiple co-morbidities
High risk for death
•Actively dying
Withholding/
Withdrawing
Life
Sustaining
Treatments
The Role of the Health
Care Professional
• The physician helps the patient and family:
– Elucidate their own values
– Decide about life-sustaining (death
prolonging?) treatments
– Dispel misconceptions
– Understand goals of care
• Facilitate decisions
The Role of the Health
Care Professional
• Discuss alternatives
– Including palliative and hospice care
• Document preferences, medical orders
• Involve, inform other team members
• Assure comfort, non-abandonment
Common Concerns
• Legally required to ‘do everything’?
• Is withdrawal, withholding euthanasia?
• Are you killing the patient when you
remove a ventilator or treat pain?
Common Concerns
• Can the treatment of symptoms constitute
euthanasia?
• Is the use of substantial doses of opioids
euthanasia?
Principle of Double Effect
• An action with a good and bad effect is
ethically acceptable if:
– The action is morally good
– Only the good effect is intended (even if the
bad effect is foreseen)
– The good effect is not achieved by way of the
bad effect
– The good result outweighs the bad
Ethical Basis for Sedation
for Refractory Symptoms
• Suffering individuals have a legitimate
claim to comfort measures and relief of
suffering is a professional obligation.
• Individuals can reject unwanted
interventions: the right to bodily integrity,
and to be free of unwanted intrusion
allows individuals to refuse life sustaining
therapies.
Sedation and Withholding
Life Sustaining Therapy
• Grounded in the right to be free of
unwanted intervention and the obligation
to provide comfort measures
• Not equivalent to assisted suicide
– An active intervention for the purpose of
causing death
Opioids and the Fear of
Hastening Death
“The use of morphine in the relief of cancer
pain carries no greater risk than that of aspirin
when used correctly.” Rather than hastening
death “the correct use of morphine is more
likely to prolong a patient’s life…because he
(or she) is more rested and pain-free.”
Twycross RG. Acta Anaesthesiol Scand 1082;74:83-90.
Opioids and the Fear of
Hastening Death
• “Most doctors are more aware of the sideeffects of opioids…than of the side-effects
of pain.” Grond et al. J Pain Sympt Manage 1991;6:411.
• “I can’t think of any other area in medicine
in which such an extravagant concern for
side effects so drastically limits
treatment…” Angell M. N Engl J Med 1982;306:98-99.
Setting the Stage For Discussing
Withdrawal of Life Sustaining
Treatments
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Discuss general goals of care
Establish context for the discussion
Discuss specific treatment preferences
Discuss the recommendation to withdraw
a treatment (not care!) within this context
• Respond to emotions
• Establish and implement the plan
Life-Sustaining
Treatments
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Resuscitation
Mechanical ventilation
Surgery
Dialysis
Blood transfusions,
blood products
• Diagnostic tests
• Artificial nutrition,
hydration
• Antibiotics
• Other treatments
• Future hospital, ICU
admissions
Artificial Nutrition and
Hydration
• Difficult to discuss
• Food, water are symbols of caring
• Withdrawal symbolizes
abandonment/cruelty
• Common fear of suffering associated with
‘starvation’
Review Goals
• Establish overall goals of care
• Will artificial feeding, hydration help
achieve these goals?
Address Misperceptions
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Causes of poor appetite, fatigue
Relief of dry mouth
Delirium
Urine output
‘Starvation’
Help Family
• Identify and name feelings, emotional
needs
• Identify other ways to demonstrate caring
The Normal Process of Dying
• Loss of appetite
• Decreased oral fluid intake, gradually
increasing sleepiness and coma
• Artificial food / fluids may make the
situation worse
– Breathlessness, edema, incontinence,
ascites, nausea, respiratory secretions, line
sepsis
Futility And Conflict
• Worried well
• Self-resolving illness
• Low grade acute illness
• Chronic diseases
• Moderate to severe acute illness
• Serious and Life Threatening
Illness
• Significant diagnosis
• Multiple co-morbidities
• High risk for death
•Actively dying
Resolving
Futility
Conflicts
Definitions Of Medical
Futility
• A medical intervention that won’t achieve
the patient’s desired goal
• Serves no legitimate goal of medical
practice
• Ineffective more than 99% of the time
• Does not conform to accepted community
standards
Is It Really Futile?
• Unequivocal cases of medical futility are
rare
• Miscommunication, value differences are
more common
• Case resolution more important than
definitions
Health Care Providers and
Futility
• Patients/families may be invested in
interventions, per se
• Physicians/other professionals may also
be invested in specific interventions
• Any party may perceive futility
Conflict Over Treatment
• Unresolved conflicts lead to misery
– Most can be resolved
• Try to resolve differences
– Doctor and family are on the same side,
trying to achieve what’s best for the patient
• Support the patient and family
• Base decisions on principles of
informed consent, advance care
planning, and the goals of medical care
Differential Diagnosis of
Futility Situations
• Inappropriate surrogate
• Role dissonance
– “What would a good daughter do?”
– “What would my father do if he could decide?”
• Anticipation of disapproval of others
– (family, clergy)
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Misunderstanding
Personal factors
Values conflict
Basic differences of opinion
Misunderstanding:
Underlying Causes
• Confusion about the diagnosis
• Too much jargon
• Different or conflicting information from
other physicians
• Previous over-optimistic prognosis
• Stressful environment
Misunderstanding:
Underlying Causes
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Sleep deprivation
Emotional distress
Psychologically unprepared
Inadequate cognitive ability
Misunderstanding: How
to Respond
• Choose a primary communicator
• Give information in
– Small pieces
– Multiple formats
• Use understandable language
• Frequent repetition may be required
• Ask patient or surrogate to repeat back
Misunderstanding: How
to Respond
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Assess understanding frequently
Do not hedge to “provide hope”
Encourage writing down questions
Provide support
Involve other health care professionals
and try to ensure consistency of message
before you talk to the patient/family
Differential Diagnosis of
Futility Situations
• Personal factors
– Distrust
– Guilt
– Grief
– Intra-family issues
– Secondary gain
– Physician/nurse/VIP as patient
Differential Diagnosis of
Futility Situations
• Values conflict
– Religious
– Miracles
– Value of life
• Basic differences of opinion
– Disagreement over goals
– Disagreement over benefits
A Due Process
Approach to Futility
• Earnest attempts in advance
Exploring the Conflict
With Families
• What do you understand?
• In what situations can you imagine ____ not
wanting to live?
• What are you hoping that we can
accomplish?
• What do you think ___ would want us to
accomplish for him/her?
• Which of these are the most important?
• Are there disagreements among family
members?
(Goold et al, JAMA 2000)
A Due Process
Approach to Futility
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Earnest attempts in advance
Joint decision-making
Negotiation of disagreements
Palliative care consultation
Involvement of an institutional committee
Transfer of care to another physician
Transfer to another institution
What Is the Patient’s
Good?
“If medicine takes aim at death prevention, rather than
at health and relief of suffering, if it regards every
death as premature, as a failure of today’s medicinebut avoidable by tomorrow’s- then it is tacitly asserting
that its true goal is bodily immortality...Physicians
should try to keep their eyes on the main business,
restoring and correcting what can be corrected and
restored, always acknowledging that death will and
must come, that health is a mortal good, and that as
embodied beings we are fragile beings that must stop
sooner or later, medicine or no medicine.”
Kass LR. JAMA 1980