WASHINGTON REGIONAL PALLIATIVE CARE Helping Patients Live Better…
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Transcript of WASHINGTON REGIONAL PALLIATIVE CARE Helping Patients Live Better…
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.