Washington Regional Palliative Care

1. Washington Regional Palliative Care Helping Patients Live Better…

2. From Amanda Moment, LICSW Jane deLima Thomas, MD Palliative Care Service Dana Farber Cancer Institute/ Brigham and Women’s Hospital Difficult News • Who do we have in the room? • RN’s • NP’s • SW’s • MD’s • Chaplains • PA’s • Other?

3. What is serious news? “any news that drastically and negatively alters the patient’s view of her or his future”. Buckman R. How to Break Bad News. Baltimore: Johns Hopkins University Press, 1992

4. 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

5. 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)

6. “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

7. An algorithm for discussingdifficult news can be helpful. • Create the proper setting • Establish what the patient understands • Establish what the patient wants to know • Break the news • Respond to emotion • Summarize and support

8. 1. Create the proper setting • Uninterrupted time • Quiet, private space • Include the important stakeholders • Gather the relevant information

9. 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?”

10. 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?”

11. 4. Break the news (facts) • Warning shot • Key information • - concise • - simple language

12. 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

13. 6. Summarize and Support • Summarize the discussion • Identify supports • Agree on a plan for the next steps • Express non-abandonment • Allow for hope

14. From Eva H. Chittenden MD Director of Educational Programs, Palliative Care Service, Massachusetts General Hospital Decoding Code Status To code or not to code? How do you want to die? How do you want to live until you die?

15. Survival: All adult inpatients • Immediate survival: 45% • Survival to hospital discharge: 13-18% Girota S et al. NEJM 2012 Larkin GL et al. Resuscitation 2010 Ehlenback WJ et al. NEJM 2009

16. Decreased Survival • Cancer • Sepsis (pressors/intubation) • Acute stroke • Liver disease • Renal insufficiency • Trauma 10 % Girota S et al. NEJM 2012 Larkin GL et al. Resuscitation 2010 Ehlenback WJ et al. NEJM 2009 Urberg M, Ways C. J FamPract 1987 Ebell MH. J FamPract 1992

17. Improved Survival • Acute coronary syndrome • Surgical illness Up to 40% Girota S et al. NEJM 2012* Larkin GL et al. Resuscitation 2010 Ehlenback WJ et al. NEJM 2009 Urberg M, Ways C. J Ebell MH. J FamPract 1992

18. Why discuss outcomes of codes? Patients who are told survival outcomes of codes make diSchonwetter RS et al. J Gen Intern Med 1993 Murphy DJ et al. NEJM 1994 Kaldjian LC et al. J Med Ethics 2009fferent decisions

19. 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

20. The “difficult” patient First Step: Recognize you are in a Difficult Interaction From Guy Maytal, MD Associate Director of Ambulatory Psychiatry Palliative Care Psychiatry Massachusetts General Hospital

21. “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

22. 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

23. 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

24. The “Difficult” Patient Definition: A patient who stimulates a series of negative thoughts and feelings in most clinicians

25. The Difficult Patient From James Groves, MD • Dependent Clingers • Entitled Demanders • Manipulative Help-Rejecters • Self-destructive Deniers

26. Dependent Clingers • Escalate from appropriate requests to repeated, ardent, and inappropriate demands. • Clinician reaction: Desire to flee/avoid • Appropriate actions: Set limits on dependency

27. 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.

28. 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.

29. 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

30. 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).

31. Clinician traits/experiences that contribute to difficult interactions • Perfectionism • Compulsivity • Depression/Anxiety • Burn-Out

32. 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?

33. Difficult families

34. What is “Difficult”? “All happy families resemble one another, but each unhappy family is unhappy in its own way.” - Leo Tolstoy, Anna Karenina

35. 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.

36. 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

37. 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?

38. 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”?...

39. 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?

40. 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?

41. 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.”

42. 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

43. 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.