At the. End of Life. difficult conversations about. organ donation

Transcription

1 At the End of Life difficult conversations about organ donation

2 Hope is the power of being cheerful in circumstances we know to be desperate.

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4 Hope is an attachment to something I believe that I do not possess. Letting go of my attachment may allow me to realize I already have everything I need.

5 What is Palliative Care?

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15 HEMODIALYSIS ANGIOPLASTY CHF COPD Patient Oriented Diabetes HOSPICE

16 Existential What is Palliative Care? Spiritual Social Psychological Physical

17 Anatomy of a Family Meeting

18 Why Meet?... Last 3 days of life 45% of patients are unconscious 10% of surrogates thought care was contrary to patient s preference 1 Most would want surrogate to help in decision making if they are unable 2 1. Lynn, Ann Intern Med, Azoulay, Crit Care Med, 2003

19 Why Meet?... 46% of family members perceived conflict, often over decision making and communication 1 33% of family members had PTSD symptoms, especially if involved in decisionmaking 2 50% of family members don t understand diagnosis, prognosis, or treatment 3 1. Abbot, Crit Care Med, Azoulay, Am J Respir Crit Care Med, Azoulay, Crit Care Med, 2000

20 Why Meet? Patients wishes known in only 20% of EOL discussions 1 Advance directives and advance care planning are either: not completed, or not followed 2 Surrogate named by law often not who patient would name 3 Surrogates often are not able to predict patient preferences 4 1. Cohen, Intensive Care Med, Tulsky, JAMA, Hayley, J Am Geriatric Soc, Engelberg, J Pain Symptom Manage, 2005

21 Where Do We Meet? 1 in 5 deaths in America occur after an ICU admission 1 90% of patients who die in the ICU do so following a decision to limit therapy 2 <5% of ICU patients are able to communicate at the time that the decision is made to withhold or withdraw 2 1. Angus, Crit Care Med, Prendergast, Am J Respir Crit Care Med, 1997

22 What Families Want Role clarification, facilitate consensus, timely communication, not placing decisionmaking burden on one person 1 Role in Decision Making 2,3 North America: shared decision making Varies with geography and culture No shared definition of shared decisionmaking 4 1. Tilden, Arch Intern Med, Heyland, Chest, Azoulay, Crit Care Med, Makoul, Patient Educ Couns, 2005

23 Simply Put What is wrong What is being done What is most likely to happen next What is the most likely outcome What is the family s role in the decision making process

24 Focus on Outcomes Intensive Communication Intervention 1 Review medical facts, options, discuss patients perspectives, agree on care plan, agree on milestones Multidisciplinary meeting within 72h of admission Length of Stay decreased from 4 3 days without increase in mortality Reduced disagreement within team and between team and family Persists at 4 years 2 1. Lilly, Am J Med, Lilly, Crit Care Med, 2003

25 Purpose of a Family Meeting Review the medical condition Gain their perception of the situation Medical update: condition, ongoing care, etc. Set treatment goals Consider options Establish future meetings Resolve patient/family/staff conflicts

26 Surrogate Decision Making Makoul model Essential Elements: Define/Explain Problem Present Options Discuss pros and cons Review the patient s values/preferences Patient ability/self efficacy Doctor knowledge/recommendations Check/Clarify understanding Make or explicitly defer decision Arrange follow up G Makoul Pat Educ Couns 2006

27 Surrogate Decision Making Makoul Model Ideal Elements: Unbiased information Define roles Present evidence Mutual agreement G Makoul Pat Educ Couns 2006

28 Surrogate Decision Making Makoul Model General Qualities: Deliberation/negotiation Flexibility/individualized approach Information exchange Involves at least two people Middle ground Partnership Patient education Patient participation Process/stages G Makoul Pat Educ Couns 2006

29 S P I K E S

30 Setting the Scene

31 Understand their Perception

32 Get an Invitation

33 Warning Shot

34 Share Your Knowledge

35 Empathic Empathic Statements Statements NURSE Naming Understanding Respecting/Praising Supporting Exploring I Wish Statements

36 Summarize Strategize

37 Sit

38 Mind the Volume

39 Match the patient

40 Pace yourself

41 Negotiate the Agenda

42 Don t talk too much

43 Tough Times Transitions in Care Goals Transitions Heroes Denial

44 Goal Setting Hope for the Best, Plan for the Worst Avoid the useless: Do you want everything done for her? Should we restart her heart if it stops? Make a recommendation

45 Transitions in care Fix Knowledge barriers Orient to Outcomes Respond to Emotion

46 The 11 th Hour Hero

47 I want everything done

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