Isnt It Time We Talked Communicating With Patients With Serious Illness

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Isnt 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 sean.morrison_at_mssm.edu www.n
prc.org
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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

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The Role of The Health Care Professional

• 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

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Advance Care Planning

• Worried well
• Self-resolving illness
• Low grade acute illness

• Chronic diseases
• Moderate to severe acute illness

Advance Care Planning

• Serious and Life Threatening Illness
• Significant diagnosis
• Multiple co-morbidities
• High risk for death

• Actively dying

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Advance Care Planning A Five Step Approach

• Introduce the topic
• Make it routine
• This is something that I discuss with all of my
  patients. Id like to discuss it with you.
• Engage in structured discussions
• Document patient preferences
• Review, update
• Apply directives when need arises

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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
• Dont focus on specific interventions
• Describe role of the proxy

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Advance Care Planning A Five Step Approach

• Introduce the topic
• Engage in structured discussions
• Document patient preferences
• Review, update
• Apply directives when need arises

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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

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Establishing Goals For Medical Care

• Worried well
• Self-resolving illness
• Low grade acute illness

• Chronic diseases
• Moderate to severe acute illness

Establishing Goals of Care

• Serious and Life Threatening Illness
• Significant diagnosis
• Multiple co-morbidities
• High risk for death

• Actively dying

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Goals of Care

• Every one has a personal sense of
• 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
• Physicians role to clarify goals, treatment plan

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Potential Goals of Care

• Cure of disease
• Avoidance of premature death
• Maintenance or improvement in function
• Prolongation of life

• Relief of suffering
• Quality of life
• Staying in control
• A good death
• Support for families and loved ones

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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

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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

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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

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Communicating Prognosis

• Physicians consistently markedly over-estimate
  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 its ok to hedge
• Offer a range or average for life expectancy

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Language With Unintended Consequences

• Do you want us to do everything possible?
• Will you agree to discontinue care?
• Its time we talk about pulling back.
• I think we should stop aggressive therapies.
• Im going to make it so that he wont suffer.
• Theres nothing more that we can do for him.

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Alternative Language to DescribeThe 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

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When We Cannot Support a Patients 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

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Withholding/Withdrawing Life Sustaining Treatments

• Worried well
• Self-resolving illness
• Low grade acute illness

• Chronic diseases
• Moderate to severe acute illness

Withholding/Withdrawing Life Sustaining Treatments

• Serious and Life Threatening Illness
• Significant diagnosis
• Multiple co-morbidities
• High risk for death

• Actively dying

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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

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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

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Common Concerns

• Legally required to do everything?
• Is withdrawal, withholding euthanasia?
• Are you killing the patient when you remove a
  ventilator or treat pain?

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Common Concerns

• Can the treatment of symptoms constitute
  euthanasia?
• Is the use of substantial doses of opioids
  euthanasia?

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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

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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.

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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

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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 patients lifebecause he (or she) is
  more rested and pain-free.
  
• Twycross RG. Acta Anaesthesiol
  Scand 10827483-90.

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Opioids and the Fear of Hastening Death

• Most doctors are more aware of the side-effects
  of opioidsthan of the side-effects of pain.
  Grond et al. J Pain Sympt Manage 19916411.
• I cant 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 198230698-99.

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Setting the Stage For Discussing Withdrawal of
Life Sustaining Treatments

• 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

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Life-Sustaining Treatments

• Resuscitation
• Mechanical ventilation
• Surgery
• Dialysis
• Blood transfusions, blood products

• Diagnostic tests
• Artificial nutrition, hydration
• Antibiotics
• Other treatments
• Future hospital, ICU admissions

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Artificial Nutrition and Hydration

• Difficult to discuss
• Food, water are symbols of caring
• Withdrawal symbolizes abandonment/cruelty
• Common fear of suffering associated with
  starvation

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Review Goals

• Establish overall goals of care
• Will artificial feeding, hydration help achieve
  these goals?

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Address Misperceptions

• Causes of poor appetite, fatigue
• Relief of dry mouth
• Delirium
• Urine output
• Starvation

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Help Family

• Identify and name feelings, emotional needs
• Identify other ways to demonstrate caring

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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

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Futility And Conflict

• Worried well
• Self-resolving illness
• Low grade acute illness

• Chronic diseases
• Moderate to severe acute illness

Resolving Futility Conflicts

• Serious and Life Threatening Illness
• Significant diagnosis
• Multiple co-morbidities
• High risk for death

• Actively dying

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Definitions Of Medical Futility

• A medical intervention that wont achieve the
  patients desired goal
• Serves no legitimate goal of medical practice
• Ineffective more than 99 of the time
• Does not conform to accepted community standards

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Is It Really Futile?

• Unequivocal cases of medical futility are rare
• Miscommunication, value differences are more
  common
• Case resolution more important than definitions

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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

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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 whats 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

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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)
• Misunderstanding
• Personal factors
• Values conflict
• Basic differences of opinion

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Misunderstanding Underlying Causes

• Confusion about the diagnosis
• Too much jargon
• Different or conflicting information from other
  physicians
• Previous over-optimistic prognosis
• Stressful environment

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Misunderstanding Underlying Causes

• Sleep deprivation
• Emotional distress
• Psychologically unprepared
• Inadequate cognitive ability

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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

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Misunderstanding How to Respond

• 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

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Differential Diagnosis of Futility Situations

• Personal factors
• Distrust
• Guilt
• Grief
• Intra-family issues
• Secondary gain
• Physician/nurse/VIP as patient

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Differential Diagnosis of Futility Situations

• Values conflict
• Religious
• Miracles
• Value of life
• Basic differences of opinion
• Disagreement over goals
• Disagreement over benefits

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A Due Process Approach to Futility

• Earnest attempts in advance

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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)
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A Due Process Approach to Futility

• 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

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What Is the Patients 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 todays medicine- but avoidable by tomorrows-
  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