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 • 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

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Worried well

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Self-resolving illness

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Low grade acute illness

•

Chronic diseases

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Moderate to severe acute illness

•

Serious and Life Threatening Illness

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Significant diagnosis

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Multiple co-morbidities

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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.” • 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

• 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

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Worried well

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Self-resolving illness

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Low grade acute illness

•

Chronic diseases

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Moderate to severe acute illness

•

Serious and Life Threatening Illness

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Significant diagnosis

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Multiple co-morbidities

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High risk for death

•

Actively dying Establishing Goals of Care

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 • 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 • 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 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 it’s ok to hedge – Offer a range or average for life expectancy

Language With Unintended Consequences

• 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

causing death of

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 side effects 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 • 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

• 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

• 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) • 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

• 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

• 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

• 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 medicine but 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