Communication and Decision Making  Near the End of Life Dalhousie Critical Care Lecture Series
Learning Objectives <ul><li>Understand why EOL care is an important part of your curriculum </li></ul><ul><li>Explain the ...
Dying in Canada:  Is it an Institutionalized, Technologically Supported Experience? Proportion of Hospital Deaths in 1997 ...
Proportion of Hospital Deaths in a ICU Dying in Canada:  Is it an Institutionalized, Technologically Supported Experience?...
“ Welcome to God’s waiting room!”
What is Quality End of Life Care?
Quality of End of Life Care in Canada Results from Patient’s Perspective N= 440 Heyland CMAJ 2006;174:627 41.8  To have an...
Quality of End of Life Care in Canada Results from Family Member’s Perspective N= 160  Heyland CMAJ 2006;174:627 69.4  To ...
End of Life Decisions <ul><li>Review of the Literature: </li></ul><ul><ul><li>Poor communication between physician and pat...
Importance of Communication <ul><li>“ The way the physician spoke to me caused me more pain than I experienced from the di...
End of Life Decisions <ul><li>Narrow definition: </li></ul><ul><ul><li>Application or withdraw of life sustaining therapie...
<ul><li>Imminent Death </li></ul><ul><li>Talking about wanting to die </li></ul><ul><li>Inquiries about hospice or palliat...
<ul><li>Discussing Prognosis </li></ul><ul><li>Discussing treatment with low probability of success </li></ul><ul><li>Disc...
Patient Provider Surrogate Characteristics Relationship, Attitude, Knowledge, Values, Preferences, Perceptions, Insurance,...
Models Describing Patient- Physician Relationships Active Role Shared Passive Role Patient Decides Physician Decides
Decision Making During Serious Illness:  What role do patients really want to play?   <ul><li>I prefer to make the decisio...
<ul><li>64% public want to select own treatment </li></ul><ul><li>59% newly Dx’d breast cancer want MD to make Rx decision...
Patient Population (n=440) <ul><li>Inclusion Criteria </li></ul><ul><ul><li>- 55 years of age  </li></ul></ul><ul><ul><li>...
Patient Preferences for Decisional Responsibility Per cent Heyland Chest 2006
Who Would You Like to be Involved? Per cent Heyland Chest 2006 (in press)
Substitute Decision Makers’ Preferences  for Decisional Responsibility  Per cent n=789 Heyland Int Care Med 2003;29:75
Information Most Important to Patients Facing a Life-threatening Illness <ul><li>Most Important </li></ul><ul><ul><li>chan...
ME Let Decide What do  you want us to do? US Let Decide
End-of-life discussions should not be like a fast food restaurant menu
Case Presentation  <ul><li>91 yo female </li></ul><ul><li>significant co morbiditiies  </li></ul><ul><li>Admitted 3 days p...
Principles of Communication  Around EOL issues <ul><li>General principles </li></ul><ul><ul><li>quiet, private environment...
Principles of Communication  Around EOL issues <ul><li>Who are you talking to? </li></ul><ul><ul><li>What is their life st...
Principles of Communication  Around EOL issues <ul><li>What are you going to say? </li></ul><ul><ul><li>Like any other tec...
EoL Communication <ul><li>Establish roles, relationships and responsibilities </li></ul><ul><ul><li>“ I’m Dr. X and I am s...
<ul><li>Assess impact of illness on patient/family </li></ul><ul><ul><li>“ How are you (and family) coping…. </li></ul></u...
<ul><li>Provide medical, prognostic information </li></ul><ul><ul><li>use straightforward but sensitive language that’s un...
<ul><li>Assess goals and values </li></ul><ul><ul><li>Patient </li></ul></ul><ul><ul><ul><li>“ As you think about the futu...
<ul><li>Help clarify values and preferences </li></ul><ul><ul><li>“ So what I hear you say is…” NOT “What do you want us t...
<ul><ul><li>Shared </li></ul></ul><ul><ul><ul><li>“ Based on what you’ve told me. it seems like we should….” </li></ul></u...
<ul><li>General:  Overall goals of treatment </li></ul><ul><ul><li>Relative emphasis on life prolongation </li></ul></ul><...
<ul><ul><li>Identify key “clinical milestones” </li></ul></ul><ul><ul><li>Establish time to review plan again </li></ul></...
<ul><li>Resolve any other concerns </li></ul><ul><ul><li>“ Are there any other concerns or questions you might have?” </li...
<ul><li>Restate the Plan </li></ul><ul><ul><li>“ OK, our plan then is to…..” (look for verbal and/or non-verbal assent) </...
Language Problems <ul><li>Don’t say “He is not doing very well”  </li></ul><ul><ul><li>… when you meant to say “he is dyin...
Substitute Decision Makers <ul><li>Half of families do not understand role of surrogates </li></ul><ul><li>Educate them as...
When Withdrawing Life Sustaining Technology <ul><li>Explain process </li></ul><ul><ul><li>Focus on comfort </li></ul></ul>...
Families Looking Back:  One year after discussion of withdrawal or withholding <ul><li>Many families perceived conflict </...
Family Satisfaction with family conferences about end of life care <ul><li>Family conferences </li></ul><ul><ul><li>mean d...
Conclusions <ul><li>EOL decision making is complex process </li></ul><ul><li>Specific communication/language strategies ma...
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End Of Life Care

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  • End Of Life Care

    1. 1. Communication and Decision Making Near the End of Life Dalhousie Critical Care Lecture Series
    2. 2. Learning Objectives <ul><li>Understand why EOL care is an important part of your curriculum </li></ul><ul><li>Explain the nature of physician-patient relationships and how clinical decisions are made </li></ul><ul><li>Articulate a practical approach to communication around EOL decisions. </li></ul>
    3. 3. Dying in Canada: Is it an Institutionalized, Technologically Supported Experience? Proportion of Hospital Deaths in 1997 Heyland Journal of Palliative Care 2000;16:S10
    4. 4. Proportion of Hospital Deaths in a ICU Dying in Canada: Is it an Institutionalized, Technologically Supported Experience? Heyland Journal of Palliative Care 2000;16:S10
    5. 5. “ Welcome to God’s waiting room!”
    6. 6. What is Quality End of Life Care?
    7. 7. Quality of End of Life Care in Canada Results from Patient’s Perspective N= 440 Heyland CMAJ 2006;174:627 41.8 To have an adequate plan of care and services available to look after you at home upon discharge 41.8 To not be a physical or emotional burden on your family 43.9 To complete things and prepare for life’s end 44.1 That information about your disease be communicated to you in a honest manner 55.7 Not to be kept alive on life support when there is little hope for a meaningful recovery 55.8 To have trust and confidence in the Doctor looking after you % “Extremely Important ” Areas of Greatest “Importance”
    8. 8. Quality of End of Life Care in Canada Results from Family Member’s Perspective N= 160 Heyland CMAJ 2006;174:627 69.4 To have an adequate plan of care and services available to look after you at home upon discharge 68.1 That your family member not be kept alive on life supports when there is little hope of recovery 70.6 That information about your disease be communicated to you in a honest manner 70.6 That your family member has relief of physical symptoms 74.4 To have trust and confidence in the Doctor looking after you % “Extremely Important ” Areas of Greatest “Importance”
    9. 9. End of Life Decisions <ul><li>Review of the Literature: </li></ul><ul><ul><li>Poor communication between physician and patient </li></ul></ul><ul><ul><li>Infrequently done </li></ul></ul><ul><ul><li>Interventional studies have failed </li></ul></ul><ul><ul><li>Complex decision making process </li></ul></ul>
    10. 10. Importance of Communication <ul><li>“ The way the physician spoke to me caused me more pain than I experienced from the disease itself,” </li></ul><ul><ul><ul><ul><ul><li>Majorie </li></ul></ul></ul></ul></ul><ul><li>“ In my research, a portion of the suffering that people experienced resulted from the way in which doctors communicated with them.” </li></ul><ul><li>Dr David Kuhl </li></ul><ul><ul><ul><ul><ul><li>What Dying People Want, David Kuhl, 2002 </li></ul></ul></ul></ul></ul>
    11. 11. End of Life Decisions <ul><li>Narrow definition: </li></ul><ul><ul><li>Application or withdraw of life sustaining therapies </li></ul></ul><ul><li>Broader definition </li></ul><ul><ul><li>“ As you approach the end of your life, what do you want to happen?” </li></ul></ul><ul><ul><li>Other issues unrelated to health care </li></ul></ul>
    12. 12. <ul><li>Imminent Death </li></ul><ul><li>Talking about wanting to die </li></ul><ul><li>Inquiries about hospice or palliative care </li></ul><ul><li>Recently hospitalized for severe, progressive illness </li></ul><ul><li>Severe suffering and poor prognosis </li></ul>Clinical Indications for Discussion EOL Care: Urgent Indications Quill JAMA :282;2502
    13. 13. <ul><li>Discussing Prognosis </li></ul><ul><li>Discussing treatment with low probability of success </li></ul><ul><li>Discussing hopes and fears </li></ul><ul><li>Physician would not be surprised if patient died in next 6-12 months </li></ul>Clinical Indications for Discussion EOL Care: Routine Indications Quill JAMA :282;2502
    14. 14. Patient Provider Surrogate Characteristics Relationship, Attitude, Knowledge, Values, Preferences, Perceptions, Insurance, Wealth 1) Info exchange 2) Deliberation 3) Decisional Responsibility Characteristics Age, Race, Gender, Capacity, Willingness to Discuss Attitude, Knowledge, Values, Preferences, Perceptions Symptoms, Quality of Life, Wealth, Insurance Characteristics Age, Gender, Profession, Years of Practice, Attitude, Knowledge, Values , Preferences, Training, Communication Strategies <ul><li>Environmental </li></ul><ul><li>Timing </li></ul><ul><li>Barriers </li></ul><ul><li>Institutional policies </li></ul>Resuscitation or WLS? Conceptual Framework for End of Life Decisions “ consideration of patient preferences” an essential element of physician competence. CanMEDS
    15. 15. Models Describing Patient- Physician Relationships Active Role Shared Passive Role Patient Decides Physician Decides
    16. 16. Decision Making During Serious Illness: What role do patients really want to play? <ul><li>I prefer to make the decision about which treatment I will receive. </li></ul><ul><li>I prefer to make the final decision about my treatment after seriously considering my doctor’s opinion. </li></ul><ul><li>I prefer that my doctor and I share responsibility for deciding which treatment is best for me. </li></ul><ul><li>I prefer that my doctor makes the final decision about which treatment will be used but seriously considers my opinion. </li></ul><ul><li>I prefer to leave all decision regarding my treatment to my doctor. </li></ul>(Degner et al.)
    17. 17. <ul><li>64% public want to select own treatment </li></ul><ul><li>59% newly Dx’d breast cancer want MD to make Rx decisions </li></ul><ul><li>Most want MD and family to share responsibility if too ill to participate </li></ul>Decision Making During Serious Illness: What role do patients really want to play?
    18. 18. Patient Population (n=440) <ul><li>Inclusion Criteria </li></ul><ul><ul><li>- 55 years of age </li></ul></ul><ul><ul><li>- admitted for medical reasons </li></ul></ul><ul><ul><li>- have advanced COPD, CHF, cancer, or cirrhosis </li></ul></ul><ul><ul><li>- expected hospital stay of at least 72 hours </li></ul></ul><ul><ul><li>- speak English </li></ul></ul><ul><li>Exclusion Criteria </li></ul><ul><ul><li>- psychiatric illness </li></ul></ul><ul><ul><li>- expected difficulty with communication </li></ul></ul>Decision Making During Serious Illness: What role do patients really want to play?
    19. 19. Patient Preferences for Decisional Responsibility Per cent Heyland Chest 2006
    20. 20. Who Would You Like to be Involved? Per cent Heyland Chest 2006 (in press)
    21. 21. Substitute Decision Makers’ Preferences for Decisional Responsibility Per cent n=789 Heyland Int Care Med 2003;29:75
    22. 22. Information Most Important to Patients Facing a Life-threatening Illness <ul><li>Most Important </li></ul><ul><ul><li>chances of surviving </li></ul></ul><ul><ul><li>resultant health state </li></ul></ul><ul><li>Moderate Importance </li></ul><ul><ul><li>Impact on family’s lives </li></ul></ul><ul><li>Least Important </li></ul><ul><ul><li>Length of hospital stay, </li></ul></ul><ul><ul><li>probability of institutionalization </li></ul></ul><ul><ul><li>amount of pain </li></ul></ul><ul><ul><li>ICUs, ventilators etc. </li></ul></ul>Heyland Chest 2006
    23. 23. ME Let Decide What do you want us to do? US Let Decide
    24. 24. End-of-life discussions should not be like a fast food restaurant menu
    25. 25. Case Presentation <ul><li>91 yo female </li></ul><ul><li>significant co morbiditiies </li></ul><ul><li>Admitted 3 days previous with small bowel obstruction </li></ul><ul><li>Now in respiratory failure, semi- comatose </li></ul><ul><li>R1 phones daughter ” Every thing done” </li></ul><ul><li>ICU consulted </li></ul><ul><li>What next? </li></ul>
    26. 26. Principles of Communication Around EOL issues <ul><li>General principles </li></ul><ul><ul><li>quiet, private environment </li></ul></ul><ul><ul><li>eye contact, non verbal body language </li></ul></ul><ul><ul><li>listen empathetically/reflectively </li></ul></ul><ul><ul><li>acknowledge/validate reactions or emotions </li></ul></ul><ul><ul><li>have a nurse or other witness present </li></ul></ul>
    27. 27. Principles of Communication Around EOL issues <ul><li>Who are you talking to? </li></ul><ul><ul><li>What is their life story? </li></ul></ul><ul><ul><li>level of understanding? </li></ul></ul><ul><ul><li>language/education? </li></ul></ul><ul><ul><li>willingness to discuss? </li></ul></ul><ul><ul><li>do they need support? </li></ul></ul>
    28. 28. Principles of Communication Around EOL issues <ul><li>What are you going to say? </li></ul><ul><ul><li>Like any other technical procedure, you need an approach </li></ul></ul><ul><ul><ul><li>Set or Introduction </li></ul></ul></ul><ul><ul><ul><li>Body or main exchange </li></ul></ul></ul><ul><ul><ul><li>Closure </li></ul></ul></ul>
    29. 29. EoL Communication <ul><li>Establish roles, relationships and responsibilities </li></ul><ul><ul><li>“ I’m Dr. X and I am supervising your care…” </li></ul></ul><ul><ul><li>“ ..work together to determine best treatments..” </li></ul></ul><ul><ul><li>“ .. other family members involved?…” </li></ul></ul><ul><li>Assess understanding of disease </li></ul><ul><ul><li>“ What do you understand about what’s happening? </li></ul></ul>The Set
    30. 30. <ul><li>Assess impact of illness on patient/family </li></ul><ul><ul><li>“ How are you (and family) coping…. </li></ul></ul><ul><ul><li>“ What concerns you most about your illness?” </li></ul></ul><ul><li>Review goals/treatments to date and obtain permission to speak about EOL issues </li></ul><ul><ul><li>“ .. you came in with pneumonia, we started on antibiotics, worried not getting better, can we talk about our game plan if you get worse…” </li></ul></ul>EoL Communication The Set
    31. 31. <ul><li>Provide medical, prognostic information </li></ul><ul><ul><li>use straightforward but sensitive language that’s understandable; no medical jargon </li></ul></ul><ul><ul><li>Prepare them for bad news </li></ul></ul><ul><ul><ul><li>“ The test results are in and unfortunately, I have some bad news to discuss with you” </li></ul></ul></ul><ul><ul><li>Assess Understanding </li></ul></ul>EoL Communication The Body
    32. 32. <ul><li>Assess goals and values </li></ul><ul><ul><li>Patient </li></ul></ul><ul><ul><ul><li>“ As you think about the future, what is important?” </li></ul></ul></ul><ul><ul><ul><li>“ As you think about your illness, what is the best and worst thing that might happen?” </li></ul></ul></ul><ul><ul><li>Family </li></ul></ul><ul><ul><ul><li>“ How would [the patient] respond to this information, what would he or she say?” </li></ul></ul></ul><ul><ul><ul><li>Check for advance directives, either verbal or written </li></ul></ul></ul>EoL Communication The Body
    33. 33. <ul><li>Help clarify values and preferences </li></ul><ul><ul><li>“ So what I hear you say is…” NOT “What do you want us to do?” </li></ul></ul>EoL Communication The Body
    34. 34. <ul><ul><li>Shared </li></ul></ul><ul><ul><ul><li>“ Based on what you’ve told me. it seems like we should….” </li></ul></ul></ul><ul><ul><li>Active </li></ul></ul><ul><ul><ul><li>“ Some people in your circumstances would…” “What would your wishes be….” </li></ul></ul></ul><ul><ul><li>Passive </li></ul></ul><ul><ul><ul><li>“ We would propose…” </li></ul></ul></ul>Making the Decision EOL Communication and Decision Making
    35. 35. <ul><li>General: Overall goals of treatment </li></ul><ul><ul><li>Relative emphasis on life prolongation </li></ul></ul><ul><ul><li>Relative emphasis on quality of life (or death) </li></ul></ul><ul><li>Specific: Range of Interventions </li></ul><ul><ul><li>Use of Life sustaining technologies </li></ul></ul><ul><ul><li>Palliative care </li></ul></ul><ul><ul><li>Social work </li></ul></ul><ul><ul><li>Pastoral care </li></ul></ul>Developing the Plan Quill JAMA :282;2502
    36. 36. <ul><ul><li>Identify key “clinical milestones” </li></ul></ul><ul><ul><li>Establish time to review plan again </li></ul></ul>Developing the Plan
    37. 37. <ul><li>Resolve any other concerns </li></ul><ul><ul><li>“ Are there any other concerns or questions you might have?” </li></ul></ul><ul><ul><li>“ Would you like to speak to someone regarding spiritual or religious concerns?” or “What role does spirituality or religion play in his/her life?” </li></ul></ul>EoL Communication The Body
    38. 38. <ul><li>Restate the Plan </li></ul><ul><ul><li>“ OK, our plan then is to…..” (look for verbal and/or non-verbal assent) </li></ul></ul><ul><li>Provide opportunity for future communication </li></ul><ul><ul><li>“ We will see you again and revisit these issues if you like…” </li></ul></ul><ul><li>Leave with a message of hope </li></ul><ul><ul><li>Hope for recovery but prepare for the worst (use patient’s words) </li></ul></ul>EoL Communication The Closure
    39. 39. Language Problems <ul><li>Don’t say “He is not doing very well” </li></ul><ul><ul><li>… when you meant to say “he is dying”! </li></ul></ul><ul><li>Don’t say “Do you want us to do everything?” rather say, “Do you want us to do everything as long as it probable that we can achieve our goal?” </li></ul><ul><li>Don’t say “life expectancy of 6 months” when you mean to say “ for every 100 patients like you, XX% will be alive in 6 months” </li></ul>
    40. 40. Substitute Decision Makers <ul><li>Half of families do not understand role of surrogates </li></ul><ul><li>Educate them as to their role: </li></ul><ul><ul><li>You are asking them for an assessment of what the PATIENT would have wanted. </li></ul></ul><ul><ul><li>If the PATIENT had not communicated that to them; use their best judgement as to what the PATIENT would have wanted. </li></ul></ul><ul><li>They are NOT making the decision to “pull the plug”. </li></ul><ul><ul><li>It is a shared decision </li></ul></ul><ul><ul><li>Redirect them that we are acting in the patient’s best interest </li></ul></ul>^ LeClaire Chest 2005;128:1728
    41. 41. When Withdrawing Life Sustaining Technology <ul><li>Explain process </li></ul><ul><ul><li>Focus on comfort </li></ul></ul><ul><ul><li>Stepwise reduction in support </li></ul></ul><ul><ul><li>Agonal breathing </li></ul></ul><ul><li>Help them bring closure </li></ul><ul><ul><li>Take time to say “good-byes” </li></ul></ul><ul><ul><li>Sit with, touch, talk to patient </li></ul></ul><ul><ul><li>Many as want can be in room </li></ul></ul>
    42. 42. Families Looking Back: One year after discussion of withdrawal or withholding <ul><li>Many families perceived conflict </li></ul><ul><ul><li>Communication – needed more info </li></ul></ul><ul><ul><li>Behavior of staff- uncaring, disrespect </li></ul></ul><ul><li>Sources of support </li></ul><ul><ul><li>Pastoral care or clergy </li></ul></ul><ul><ul><li>Other family members </li></ul></ul><ul><ul><li>Previous discussions with patient </li></ul></ul>Abbott SCCM 2001;29:197
    43. 43. Family Satisfaction with family conferences about end of life care <ul><li>Family conferences </li></ul><ul><ul><li>mean duration 32 mins (range 7-74) </li></ul></ul><ul><ul><li>On average, family members spoke 29% and clinicians spoke 71 % </li></ul></ul><ul><ul><li>Increased proportion of family speech was significantly associated with family satisfaction </li></ul></ul>McDonagh Crit Care Med 2004;32:1484
    44. 44. Conclusions <ul><li>EOL decision making is complex process </li></ul><ul><li>Specific communication/language strategies may help initiate and make difficult decisions. </li></ul><ul><li>Using open-ended questions, empathetic listening, and shared decision making may be therapeutic as patients (families) bring closure to life. </li></ul><ul><li>More research needed to determine optimal strategies. </li></ul>
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