WASHINGTON REGIONAL PALLIATIVE CARE

Helping Patients Live Better…

Difficult News

Who do we have in the room? RN’s NP’s SW’s MD’s Chaplains PA’s Other?

From Amanda Moment, LICSWJane deLima Thomas, MD Palliative Care ServiceDana Farber Cancer Institute/Brigham and Women’s Hospital

What is serious news?

“any news that drastically and negatively

alters the patient’s view of her or hisfuture”.

Buckman R. How to Break Bad News. Baltimore: Johns

Hopkins University Press, 1992

Why is it important to give?

Early discussion of end-of-life care issues among cancer patients associated with improved outcomes: Patients more likely to have wishes followed Increases quality of life Reduces rate of hospitalization and ICU admission Increases use of hospice Reduces stress, anxiety, depression, PTSD and

bereavement morbidity in survivors Improves family satisfaction Strengthens clinician-patient relationship

How well do we give it?

Discussions happen late, patients are unprepared, and are often at their worst Large prospective cohort study, lung and

colorectal cancer 87% of patients who died had EOL discussion

reported or documented 55% of first conversations took place in

hospital First conversation took place a medianof 33

days before death(Mack, Annals Internal Med 2012)

“Difficult conversations” have threedifferent components

The facts The cancer has progressed.

The feelings “I am terrified.”

The meanings (aka, The Big Picture) “I am dying. Will I suffer? Who will take care

of my family?”Adapted from Stone D, et. al. Difficult Conversations. 1999

An algorithm for discussingdifficult news can be helpful.

1. Create the proper setting2. Establish what the patient understands3. Establish what the patient wants to

know4. Break the news5. Respond to emotion6. Summarize and support

1. Create the proper setting

Uninterrupted time Quiet, private space Include the important stakeholders Gather the relevant information

2. Establish what the patientunderstands (a “facts” conversation)

Present “What is your sense about how things are

going?” “What have the doctors been telling you

about what’s happening with your illness?” Future

“What is your sense about where things are headed?”

3. Establish what the patient wants toknow (facts, feelings, meanings)

How much information “How much information do you want about

your illness?” How to receive the information

“Some people want to know about every detail concerning their illness, while others want only recommendations and ‘the big picture.’ What do you prefer?”

4. Break the news (facts)

Warning shot Key information

- concise - simple language

5. Respond to emotion (feelings andmeaning)

Allow silence You should be speaking less than 50%of the

time. Attend to the emotion

Name the emotion “You seem shocked.”

Clarify the emotion “Can you say more about what makes you so sad?”

Make empathic statements “I can see that this is really hard for you to hear.”

Resist the urge to reassure or provide information

6. Summarize and Support

Summarize the discussion Identify supports Agree on a plan for the next steps Express non-abandonment Allow for hope

Decoding Code Status

To code or not to code?

How do you want to die?

How do you want to live until you die?

From Eva H. Chittenden MDDirector of Educational Programs, Palliative Care Service,Massachusetts General Hospital

Survival: All adult inpatients

Immediate survival: 45% Survival to hospital discharge: 13-18%

Girota S et al. NEJM 2012Larkin GL et al. Resuscitation 2010 Ehlenback WJ et al. NEJM 2009

Decreased Survival

Cancer Sepsis (pressors/intubation) Acute stroke Liver disease Renal insufficiency Trauma

10 %

Girota S et al. NEJM 2012Larkin GL et al. Resuscitation 2010 Ehlenback WJ et al. NEJM 2009Urberg M, Ways C. J Fam Pract 1987Ebell MH. J Fam Pract 1992

Improved Survival

Acute coronary syndrome Surgical illness

Girota S et al. NEJM 2012* Larkin GL et al. Resuscitation 2010Ehlenback WJ et al. NEJM 2009 Urberg M, Ways C. J Ebell MH. J Fam Pract 1992

Up to 40%

Why discuss outcomes of codes?

Patients who are told survivaloutcomes of codes make

diSchonwetter RS et al. J Gen Intern Med 1993Murphy DJ et al. NEJM 1994Kaldjian LC et al. J Med Ethics 2009fferent decisions

Challenges: Clinician Patient and Family

Unresolved feelings about death and dying

Fear of taking away hope

Often we have agendas- is that wrong?

Pressure to “get an answer”

Practical issues Time constraints Competing demands

Abruptness, discontinuity

Feeling pushed one way or the other

Strong emotions Cultural and

spiritual beliefs, backgrounds

Not wanting to discuss

The “difficult” patient

From Guy Maytal, MDAssociate Director of Ambulatory PsychiatryPalliative Care PsychiatryMassachusetts General Hospital

First Step:Recognize you are in aDifficult Interaction

“The Good Patient”

What Our Mothers Taught Don’t Waste the

Doctor’s Time Don’t Question

Authority Accept the Information

given Be Grateful Be Patient Don’t Be Tiresome No Complaining Be Nice; Never Angry

What Patient Advocates Teach Be assertive Demand questions be

answered fully Ask for clarification in

words you understand Demand all the time

you need Find and use other

sources of information

Mismatched Expectations amongClinicians, Patients, & the System

Hospital Culture vs. Patient/Family Culture

Inadequate Information/ Misinformation Unrealistic Expectations Care Provider, Patient, Family Language

Issues Socio-economic Issues Health Beliefs

From the Patient’s Perspectivethe System is Mercurial

Unstable Expectations Migrating Responsibility – Who's my doctor? We Demand Toleration of Discomfort Inadequate information Language barriers of many kinds Avoidance of:

Anger Disappointment Acknowledgment of Error

The “Difficult” Patient

Definition: A patient who stimulates aseries of negative thoughts and feelings

in most clinicians

The Difficult Patient

1. Dependent Clingers2. Entitled Demanders3. Manipulative Help-Rejecters4. Self-destructive Deniers

From James Groves, MD

Dependent Clingers

Escalate from appropriate requests to repeated, ardent, and inappropriate demands.

Clinician reaction: Desire to flee/avoid Appropriate actions: Set limits on

dependency

Entitled Demanders

Profound neediness manifesting as entitlement, intimidation, guilt-induction.

Entitlement as a “religion” Clinician reaction: First fear, then

counterattack on entitlement Appropriate actions: Re-channel

entitlement into expectations of realistically good care.

Manipulative help-rejecters

Nothing alleviates symptoms. Seek “undivorcible marriage with an

inexhaustible caregiver.” Clinician reaction: Guilt and feelings of

inadequacy Appropriate actions: “Share pessimism”

& gentle, simple reasoning.

Self-destructive deniers

Unconsciously murderous behaviors Clinician reaction: Malice, secret wish for

the patient to die Appropriate actions:

Recognize that the patient may wish to die Psychiatric consultation Resist abandoning the patient

Sometimes it is us...

Interactions always involve at least two people...

We just don’t click with some people We misread or misinterpret cues We are reminded of someone we dislike

(or like very much).

Clinician traits/experiences that contribute to difficult interactions

Perfectionism Compulsivity Depression/Anxiety Burn-Out

Approach to ManagingDifficult Interactions

Recognize and Reflect Discuss the negative thoughts/emotions Generate a differential diagnosis Bring curiosity and wonder It’s not personal

Neither the bad nor the good Who else needs to be on the team?

Difficult families

What is “Difficult”?

“All happy families resemble one another,but each unhappy family is unhappy in its

own way.”

- Leo Tolstoy, Anna Karenina

There are no “Difficult Families”

There are only families that we have reactions to and label as “negative.”

Negative feelings about patients/families are clinical data.

Open and confidential conversations about negative interactions are useful for patient care.

Awareness of your reactions as yours allows you to be present and clinically effective

Use curiosity to develop a differential diagnosis and implement effective management approaches.

Family in the Medical Setting Medical setting:

Natural for clinicians Alien, intense, and frightening for families Can bring out the worst in relatives

Emotions are raw Old patterns of disturbed behavior emerge, Threat of impending loss heightens defensiveness

(i.e. Rigidity, disdain, and blaming) The most pivotal moments of transition in family

life cycle are when members enter or exit Groves and Beresin

What is a family?

A functional unit that works to adapt to life cycle transitions/stresses

A complex system of deeply ingrained patterns of interaction among individuals with a particular history

Patient, family and treatment team are dynamic, interdependent systems existing within other larger systems (e.g. community, culture)

Where do team and family intersect?

What is “Difficult”?

Family members each experience illness & anticipation of death differently

“Natural stress dance” within the family “normal, multigenerational survival

responses” team often misinterprets and judges rather

attempting to understand their origins and function

Substitute for “difficult”?...

The Family as a System

Definition of a system: A group of interrelated parts plus the way they function together

Systems thinking: Patterns of relationship which imply rules or principles on which system is organized

Ecological framework (Interconnectedness): change in one part has consequence on the

whole. Family-plus-team as system?

The Team’s Response

“Like walking into a play”: Ongoing saga where the provider has missed the

first two acts What are our assumptions walking in?

i.e. Do we presume the setting is a “healthy, well-run unit”? Or its opposite?

Balance between immersion and distancing Clinicians must monitor their own reactions

They may inadvertently provoke difficult behavior

Counter-transference?

The Team’s Response

“The health care team’s task is to support the

family’s positive adaptive capabilities so that

systemic equilibrium is reestablished in a way

that supports the wellbeing of all members.”

Interventions based on family “type”

“Obsessive” families: Patience, tolerance, time Redirect to “bigger picture” Obsession as defense against uncertainty, anxiety

“Hysterical” families: Calm, repetitive reassurance Mindful of team reactions: avoidance, annoyance, frustration Frequent, short meetings with low emotional levels

“Dependent” families: Clear limits on team availability Limits on family behaviors/“seductions” Regularly scheduled, brief meetings Relate to family members as adults

There are no “Difficult Families”

There are only families that we have reactions to and label as “negative.”

Families do not exist in a vacuum, and neither do we – we react.

Bringing curiosity and awareness to your reactions allows you to be present and clinically effective

It is not how you feel about patients, but how you behave toward them that is relevant to care.