end of life care
TRANSCRIPT
Communication and Decision Communication and Decision Making Making
Near the End of LifeNear the End of Life
Dalhousie Critical Care Lecture Series
ICULearning Objectives
Understand why EOL care is an important part of your curriculum
Explain the nature of physician-patient relationships and how clinical decisions are made
Articulate a practical approach to communication around EOL decisions.
ICUDying in Canada: Is it an Institutionalized,
Technologically Supported Experience?
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Heyland Journal of Palliative Care 2000;16:S10
ICU
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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
ICU
“Welcome to God’s waiting room!”
ICU
Journal of theAmerican GeriatricsSociety Statement
Institute of MedicineCommittee
Emanuel and Emanuel
Physical and emotionalsymptoms
Support of function andautonomy
Advanced care planning Aggressive care near death Patient and family
satisfaction Global quality of life Family Burden Survival time Provider continuity and skill Bereavement
Overall quality of life Physical well-being and
functioning Psychosocial well-being
and functioning Spiritual well-being Patient perception of care Family well-being and
perceptions
Physical symptoms Psychological and cognitive
symptoms Social relationships and
support Economic demands and
caregiving needs Hopes and expectations Spiritual and existential
beliefs
What is Quality End of Life Care? What is Quality End of Life Care?
What is Quality End of Life Care? What is Quality End of Life Care?
ICUQuality of End of Life Care in CanadaQuality of End of Life Care in Canada
Results from Patient’s PerspectiveAreas of Greatest “Importance” %
“Extremely Important”
To have trust and confidence in the Doctor looking after you 55.8
Not to be kept alive on life support when there is little hope for a meaningful recovery
55.7
That information about your disease be communicated to you in a honest manner
44.1
To complete things and prepare for life’s end 43.9
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 41.8
N= 440
Heyland CMAJ 2006;174:627
ICUQuality of End of Life Care in CanadaQuality of End of Life Care in CanadaQuality of End of Life Care in CanadaQuality of End of Life Care in Canada
Results from Family Member’s Perspective
Areas of Greatest “Importance” % “Extremely Important”
To have trust and confidence in the Doctor looking after you 74.4
That your family member has relief of physical symptoms 70.6
That information about your disease be communicated to you in a honest manner
70.6
To have an adequate plan of care and services available to look after you at home upon discharge
69.4
That your family member not be kept alive on life supports when there is little hope of recovery
68.1
N= 160
Heyland CMAJ 2006;174:627
ICUEnd of Life Decisions
Review of the Literature:
Poor communication between physician and patient
Infrequently done Interventional studies have failed Complex decision making process
ICU
Importance of Communication
• “The way the physician spoke to me caused me more pain than I experienced from the disease itself,”
Majorie• “In my research, a portion of the suffering that people experienced resulted from the way in which doctors communicated with them.”
Dr David Kuhl
What Dying People Want, David Kuhl, 2002
ICUEnd of Life Decisions
Narrow definition: Application or withdraw of life
sustaining therapies Broader definition
“As you approach the end of your life, what do you want to happen?”
Other issues unrelated to health care
Patient Provider
Surrogate
CharacteristicsRelationship, Attitude, Knowledge, Values, Preferences, Perceptions,
Insurance, Wealth
1) Info exchange2) Deliberation3) Decisional Responsibility
CharacteristicsAge, Race, Gender, Capacity,
Willingness to DiscussAttitude, Knowledge, Values,
Preferences, PerceptionsSymptoms, Quality of Life,
Wealth, Insurance
CharacteristicsAge, Gender, Profession, Years of Practice, Attitude, Knowledge, Values , Preferences,
Training, Communication Strategies
Environmental Timing Barriers Institutional policies
Resuscitation or WLS?
Conceptual Framework for End of Life Decisions
“consideration of patient preferences” an essential element of physician competence. CanMEDS
ICUModels Describing Patient- Physician Models Describing Patient- Physician
RelationshipsRelationships
Active RoleShared Passive Role
Patient Decides Physician Decides
ICU
Decision Making During Serious Illness:
What role do patients really want to play?
A I prefer to make the decision about which treatment I will receive.
B I prefer to make the final decision about my treatment after seriously considering my doctor’s opinion.
C I prefer that my doctor and I share responsibility for deciding which treatment is best for me.
D I prefer that my doctor makes the final decision about which treatment will be used but seriously considers my opinion.
E I prefer to leave all decision regarding my treatment to my doctor.
(Degner et al.)
ICU
Patient Preferences for Decisional Responsibility
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Doctor Decides
Doctor Decides After Listening to Me
We decide
I Decide After Listening to Doctor
I Decide
Per cent
Heyland Chest 2006
ICU
Who Would You Like to be Involved?
0 5 10 15 20 25 30 35 40
Combination offamily & Dr
Doctor
Family
No one else
Per cent
Heyland Chest 2006 (in press)
ICU
Substitute Decision Makers’ Preferences
for Decisional Responsibility
0 10 20 30 40 50
Doctor Decides
Doctor Decides AfterListening to Sub
They Decide
Sub Decides AfterListening to Doctor
Surrogate Decides
Per centn=789
Heyland Int Care Med 2003;29:75
ICUInformation Most Important to Patients
Facing a Life-threatening Illness
Most Important chances of surviving resultant health state
Moderate Importance Impact on family’s lives
Least Important Length of hospital stay, probability of institutionalization amount of pain ICUs, ventilators etc. Heyland Chest 2006
ICU End-of-life discussions should not be like a fast food restaurant menu
ICUCase Presentation
91 yo female significant co morbiditiies Admitted 3 days previous with small
bowel obstruction Now in respiratory failure, semi-
comatose R1 phones daughter ” Every
thing done” ICU consulted What next?
ICU
Principles of Communication Around EOL issues
General principles quiet, private environment eye contact, non verbal body
language listen empathetically/reflectively acknowledge/validate reactions or
emotions have a nurse or other witness present
ICU
Principles of Communication Around EOL issues
Who are you talking to? What is their life story? level of understanding? language/education? willingness to discuss? do they need support?
ICU
Principles of Communication Around EOL issues
What are you going to say? Like any other technical procedure,
you need an approach Set or Introduction Body or main exchange Closure
ICU
EoL Communication
Establish roles, relationships and responsibilities “I’m Dr. X and I am supervising your care…” “ ..work together to determine best
treatments..” “.. other family members involved?…”
Assess understanding of disease “What do you understand about what’s
happening?
The Set
ICU
Assess impact of illness on patient/family “How are you (and family) coping…. “What concerns you most about your illness?”
Review goals/treatments to date and obtain permission to speak about EOL issues “.. you came in with pneumonia, we started on
antibiotics, worried not getting better, can we talk about our game plan if you get worse…”
The Set
EoL Communication
ICU
Provide medical, prognostic information use straightforward but sensitive language
that’s understandable; no medical jargon Prepare them for bad news
“The test results are in and unfortunately, I have some bad news to discuss with you”
Assess Understanding
The Body
EoL Communication
ICU
Assess goals and values Patient
“As you think about the future, what is important?”
“As you think about your illness, what is the best and worst thing that might happen?”
Family “How would [the patient] respond to this
information, what would he or she say?” Check for advance directives, either verbal or
written
The Body
EoL Communication
ICU
Help clarify values and preferences “So what I hear you say is…” NOT “What do
you want us to do?”
The Body
EoL Communication
ICU
Shared “Based on what you’ve told me. it seems
like we should….” Active
“Some people in your circumstances would…” “What would your wishes be….”
Passive “We would propose…”
Making the Decision
EOL Communication and Decision Making
ICU
General: Overall goals of treatment Relative emphasis on life prolongation Relative emphasis on quality of life (or death)
Specific: Range of Interventions Use of Life sustaining technologies Palliative care Social work Pastoral care
Developing the Plan
Quill JAMA :282;2502
ICU
Resolve any other concerns “Are there any other concerns or questions
you might have?” “ Would you like to speak to someone
regarding spiritual or religious concerns?” or “What role does spirituality or religion play in his/her life?”
The Body
EoL Communication
ICU
Restate the Plan “OK, our plan then is to…..” (look for verbal and/or
non-verbal assent)
Provide opportunity for future communication “We will see you again and revisit these issues if you
like…”
Leave with a message of hope Hope for recovery but prepare for the worst (use
patient’s words)
The Closure
EoL Communication
ICULanguage Problems
Don’t say “He is not doing very well” …when you meant to say “he is dying”!
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?”
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”
ICU
Substitute Decision Makers
Half of families do not understand role of surrogates
Educate them as to their role: You are asking them for an assessment of what the
PATIENT would have wanted. If the PATIENT had not communicated that to them;
use their best judgement as to what the PATIENT would have wanted.
They are NOT making the decision to “pull the plug”. It is a shared decision Redirect them that we are acting in the patient’s best
interest
^ LeClaire Chest 2005;128:1728
ICU
When Withdrawing Life Sustaining Technology
Explain process Focus on comfort Stepwise reduction in support Agonal breathing
Help them bring closure Take time to say “good-byes” Sit with, touch, talk to patient Many as want can be in room
ICU Families Looking Back: One year after discussion of withdrawal or
withholding
Many families perceived conflict Communication – needed more info Behavior of staff- uncaring, disrespect
Sources of support Pastoral care or clergy Other family members Previous discussions with patient
Abbott SCCM 2001;29:197
ICUFamily Satisfaction with family
conferences about end of life care
Family conferencesFamily conferences mean duration 32 mins (range 7-74)mean duration 32 mins (range 7-74) On average, family members spoke On average, family members spoke
29% and clinicians spoke 71 % 29% and clinicians spoke 71 % Increased proportion of family speech Increased proportion of family speech
was significantly associated with was significantly associated with family satisfactionfamily satisfaction
McDonagh Crit Care Med 2004;32:1484
ICUConclusions
EOL decision making is complex process Specific communication/language strategies
may help initiate and make difficult decisions.
Using open-ended questions, empathetic listening, and shared decision making may be therapeutic as patients (families) bring closure to life.
More research needed to determine optimal strategies.