Presented by: Kathleen Klaasen, Luana Whitbread, Lisa Streeter
Presentation Objectives
• To highlight the importance of
Advance Care Planning
• To share the key revisions to the Winnipeg
Health Region’s Advance Care Planning
policy and form
• To explore issues and challenges around
Advance Care Planning in the personal
care home setting
• To provide practical tips and conversation
starters for those participating in these
discussions
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Advance Care Planning
The overall process of dialogue, knowledge
sharing, and informed decision making that
needs to occur at any time when future or
potential life threatening illness treatment
options and goals of care are
being considered or revisited.
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imagine that without warning,
you are in a serious car crash.
You are in a hospital intensive
care unit. You are no longer able to
communicate with anyone. Your
heartbeat and breathing can only continue with artificial life
support. Despite the best medical treatment, your physicians
believe it is unlikely you will return to your previous quality of life.
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imagine your ability to make
your own decisions is gone. You
live at a residential care facility.
You can feed yourself but you no longer
know who you are, who your family
members are, or what happens from one moment to the next.
You will never regain your ability to communicate meaningfully
with others. Your condition will likely become worse over time.
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imagine you have a progressive
chronic illness. Your health care
team has told you that you may
lose your ability to swallow and breathe
on your own.
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Why have these conversations?
• Empowers patients/clients/residents to have
an important voice in health care decisions
• Establishes a foundation of trust between the
person and their health care team
• Ensures everyone is “on the same page”
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Overall Process of Advance Care Planning
• Health Care Directives
• Facility/Program/Site Advance Care Plans
- Levels of Intervention
- Goals of Care
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Understanding the Differences
Health Care Directives
Protected by legislation
Advance Care Plans
Policy driven
Initiated by the person
Initiated by the health care
team
Completed only if person is competent Enables discussion with family
where person is no longer
competent
Legally binding document
Consensus based document
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Room for Improvement
POLICY ISSUES
• Limited uptake in acute care
and community sectors
• Levels of intervention unclear
• Debate over the ethics of the
conflict resolution process
outlined in the policy
• Confusion over Health Care
Directives and Advance
Care Plans
MISPERCEPTIONS
• A belief that the Level of
Intervention once decided was
“written in stone”
• Labeling of individuals as “
while they are a Level One”
• Forms handed to the
person/family to complete
independently
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Significant Revisions to Policy
• Health care team expectations for sharing
ADVANC
E CARE
GOALS
PL
OF CARE ANNING
Refer to
WRHA Adv
prior to
ance
comple
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Policy
form
information with patient now explicitly stated
• New requirement for discussions prior to surgery
• Enhanced clarity that the policy does NOT deal
with situations of unresolved conflict other than
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ADVANCE CARE PLANNING
GOALS OF CARE
Refer to WRHA Advance Care Planning Policy # 110.000.200
prior to completing this form
Is there an existing Health Care Directive?
No
Yes
(If yes, it shall guide further discussions as an indication of the Patient/Client/Resident’s wishes at the time of writing)
Advance Care Planning (ACP) is the overall process of dialogue, knowledge sharing and informed decision making that needs to occur
at any time when future or potential life threatening illness treatment options and Goals of Care are being considered or revisited This
form is used to record agreed upon Goals of Care reached through full and complete ACP discussions with the Patient/Resident/Client
and/or Substitute Decision Maker about the nature of the individual’s current condition, prognosis, treatment/procedural/investigation
options, and expected benefits or burdens of those options.
GOALS OF CARE (Check the box that best describes the Patient/Resident/Client Goals of Care)
C = Comfort Care - Goals of Care and interventions are directed at maximal comfort, symptom control and maintenance of
quality of life excluding attempted resuscitation
M = Medical Care - Goals of Care and interventions are for care and control of the Patient/Resident/Client condition The
Consensus is that the Patient/Resident/Client may benefit from, and is accepting of, any appropriate investigations/
interventions that can be offered excluding attempted resuscitation
R = Resuscitation – Goals of Care and interventions are for care and control of the Patient/Resident/Client condition The
Consensus is that the Patient/Resident/Client may benefit from, and is accepting of, anyaappropriate
ave a say in health care
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interventions that can be offered including attempted resuscitation
n
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elp
h
If the required care is not available in current location or setting, does the Patient/Resident/Client want to be
transferred to alternate facility? No
Yes
Indicate all individuals who participated in Goals of Care discussion(s) by checking appropriate box(es)
Patient/Resident/Client
Print Name: ����������������������������������������������������������������������������������������������������
Family Member(s)
Print Name(s):
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Substitute Decision Maker
Print Name(s):
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ACP Goals of Care must be reviewed:
On each admission
When there is an unanticipated significant improvement or deterioration in clinical status
On or shortly after transfer to another facility (ensure copy of ACP form accompanies patient)
At the request of the patient or substitute
decision maker
At the request of the Health Care Team
Annually, at minimum
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Implementation and Education Strategies
• Multi-level, multi-media approach
• Leadership commitment
• Physician engagement
• Public education
• Staff education
• Evaluation
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Available Regional Resources
Public education/engagement
• Advance Care Planning workbook and pamphlet
• WRHA website content
• Posters in clinics, public areas
• WAVE article
• 650 Main electronic sign board
Staff education
• Train the trainer sessions
• Fact sheets
• Online education module
• Video vignettes
• Insite/ web components
• Inspire Internal Magazine
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www.winnipeghealthregion.ca
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Challenges of Advance
Care Planning in the
Personal Care Home
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Winnipeg Regional Health Authority (WRHA)
Personal Care Home Program ( PCH Program)
5829 beds in 38 Personal Care Homes
Our population
(Information from our Minimum Data Set (MDS) assessments data Sept 2010)
• Average age 85
• % who have any ACP on admission----79.5
• % who indicate Do Not Resuscitate on admission----75.6
• % who indicate they do not want to be hospitalized—2.3
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“Now you are a resident…”
In addition to
• Losses ++
• New environment , faces, routines
• Fears/uncertainties
“We’d like to talk with you about what
to do if your heart stops… ”
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Reasons why Advance Care Planning
may be a challenge
• Residents, families and staff don’t want to discuss
• Lack of familiarity with process, options
• Staff reluctance , variety of reasons
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ACP is a “process of exploring and communicating values and treatment preferences in advance of when decisions need to be made” … with the result…
Shanley et al
Australasian Journal on Ageing
December 2009
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…That there is a greater likelihood that the resident’s wishes
about end of life treatment will be known and followed
AND
There will be a minimization of unwanted
interventions at end of life
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Challenges arise from
misconceptions
and assumptions of ...
• Residents/ families/significant others
• Staff
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Misconceptions of Residents, families
and significant others
• The personal care home can provide all the care required
• Cognitive impairment prevents residents from getting
their ideas and wishes across
• Staff know best
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Misconceptions of Staff
• We shouldn’t be offering CPR as an option,
the resident will not survive the trip to the
hospital anyway
• There is no need to meet with the team—
it all comes down to the nurse
• Our residents don’t change so no need
to reassess regularly
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How do we address these misconceptions
• Educate— residents, families and staff
• Clarify—any misconceptions
• Emphasize –continuing conversations
This will result in an improvement in the quality
of conversations and more meaningful details
identified in the Goals of Care.
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Foundations for the Conversation
Self awareness / Self reflection
• If you were in their position, how might you react or behave?
• What might you be hoping for? Concerned about?
• What do we (the health care team) have to offer and what can
the patient / family expect from us as quality care?
Information / Knowledge
• Health care providers have a key role in providing information
to patients / families about choices.
• Need to ensure that accurate and consistent information is
presented by the team.
Setting the Stage
• To minimize distraction, talk in person
while sitting down
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Starting the Conversation
• One of the biggest barriers to difficult conversations is how to start
them
• Health care professionals sometimes avoid such conversations, for
fear of frightening the patient / family or leading them to think there
is an ominous problem the health care team is not being open about.
• The topic of Advance Care Planning can be introduced as an
important and normal component of any relationship between
patients and their health care team.
“It’s very helpful for us to understand what is important to you in your care… what your hopes and expectations are, and what you are concerned about.”
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Context of Current Circumstances
Seek patient / family understandings about current health status
“How have things been for you in the time leading to this admission?”
“What is your understanding of your current health?”
“When you think about the future, what is most important to you?”
“It is helpful when patients and families share their thoughts about
treatments they would or would not want as part of their care.
What are your thoughts?”
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Starting the Conversation - Connecting
There are a couple of considerations that can be useful when
connecting to people about health care scenerios and initiating the
discussions. Remember:
• Most people facing serious illness have concerns about what lies
ahead, how the illness will unfold, how it will affect them, and what
can be done about it
• Most people living with potentially life-threatening illness have
times where their mind wanders to the scary “what-if” places (what
if the chemotherapy doesn’t work; what if he’s not able to get off the
ventilator; etc.)
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Starting the Conversation – Sample Scripts 1
“I’d like to talk to you about how things are going with your condition, and
about some of the treatments that we’re doing or might be available.
“It would be very helpful for us to understand what is important to you in
your care, what your hopes and expectations are, and what you are concerned about. “
Can we talk about that now?”
(assuming the answer is “yes”)
“Many people who are living with an illness such as yours have thought
about what they would want done if [fill in the scenario] were to happen,
and how they would want their health care team to approach that.”
“Have you thought about this for yourself?”
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Starting the Conversation – Sample Scripts 2
“I know it’s been a difficult time recently, with a lot happening.
“I realize you’re hoping that what’s being done will turn this around, and
things will start to improve. We’re hoping for the same thing, and doing
everything we can to make that happen. “
“Many people in such situations find their mind wanders to some scary
‘what-if’ thoughts, such as what if the treatments don’t have the effect
that we hoped?”
“Is this something you’ve experienced? Can we talk about that now?”
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“Don’t Tell Him…
It will take away hope and he’ll just give up”
• Sometimes families want to block information from being shared
with the patient, even when the patient is competent.
• Consider helping family understand how that takes away any
opportunity for closure, such as saying goodbye and tidying up
loose ends in life.
• Ultimately, the patient has the right to accept or decline
information. Not everyone wants to know all details; some
will defer to family.
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Checking With The Patient.
How much information they want to know
• The competent patient has final say about how much they want to
know. Some would rather defer to family, particularly if it includes
health care professionals
Sample Script
“As you know, we’ve been doing some tests to look into the symptoms
you’ve been experiencing. Those results are starting to come in now.
We’ve found that some people want to know everything about their
illness, such as results, prognosis and what to expect. Others don’t want
to know very much at all, perhaps having their family more involved.
How involved would you like to be regarding information
and decisions about your illness?”
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Pacing Information – Titrating to Effect
• Information can be sensitively paced in the conversation,
by titrating increasingly focused details as determined by the
response of patient/family.
• This is much like titrating a medication to effect, with the intended
outcome being the sharing of information with patient/family in an
honest yet compassionate manner.
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Pacing Information – Titrating to Effect
Example… 56 yr male, smoker, seen in office a few days after
Emergency Dept. visit for productive cough, weight loss. Chest XRay
shows large lung tumour, almost certainly a primary CA
“I’ve asked you to come in so that we can go over some test
results from your visit to Emergency.”
“There is an area on the XRay which is very concerning.”
“On the left lung there is a shadow, which is thought to
be due to a growth, or tumour.”
Note
Simply being asked to
come in is already the first
bit of information that this
is something serious.
The second clue will be
the demeanor and body
language of the physician.
“Although we would need more tests to be sure,
this has the appearance of a lung cancer.”
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Pacing Information – Titrating to Effect
• In the example provided, the information was consistently honest,
yet increasingly direct and blunt.
• At any point during the process there may be indication that the
patient fully understands the message, at which point next steps
can be discussed.
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Helping Family And
Other Substitute Decision Makers
• Rather than asking family what they would want done for their
loved one, ask what their loved one would want for themselves
if they were able to say.
• This spares the family from a very difficult responsibility by placing
the ownership of the decision where it should be: with the patient.
• The family is the messenger of the patient’s wishes, based on their
intimate knowledge of him / her. They are merely conveying what
they feel the patient would say rather than deciding about their care .
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Helping Family And
Other Substitute Decision Makers
example
“If he could come to the bedside as healthy as he was a month ago, and
look at the situation for himself now, what would he tell us to do?”
Or
“If you had in your pocket a note from him telling you what to do under
these circumstances, what would it say?”
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Helping Family And
Other Substitute Decision Makers
• In situations where death will be an inescapable outcome, family
may nonetheless feel that their choices about care are life-anddeath decisions (treating infections, hydrating, tube feeding, etc.)
It may be helpful to say something such as:
“I know you’re being asked to make some very difficult choices about care,
and it must feel that you’re having to make life-and-death decisions.”
“You must remember that this is not a survivable condition, and none of
the choices you make can change that outcome. “
“We are asking for guidance about how we can ensure that we
provide the kind of care that he would have
wanted at this time.”
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An Approach To Decision Making
• The health care team has a key role in providing information
related to technical or medical issues…
• reviewing/explaining details about the condition, test results,
or helping explore treatment options
• indicating when a hoped-for outcome or treatment option is
not medically possible
• Patient / family must have a central role in considerations relating to
their value / belief systems (such as whether life is worth living with
a certain disability) or to experiential outcomes (such as energy,
well-being, quality of life)
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Goal-Focused Approach To Decision Making
• Treatment goals can either be physiological (e.g. measurable
clinical outcomes such as blood tests, scan results) or experiential
(i.e. outcomes that the patient will experience such as well-being,
quality of life, energy)
There are 3 main categories of potential interventions:
• Essentially certain to be effective in achieving intended physiological
goals, and consistent with standard of medical care
• Virtually certain to be ineffective in achieving intended physiological
goals (such as CPR in the context of relentless and progressive
multisystem failure) or inconsistent with standard of medical care
• Uncertain potential to achieve physiological goals, or the hoped-for
goals are not physiological/clinical but are experiential
Goals unachievable, or
inconsistent with
standard of medical care
Discuss
explain that the intervention will
not be offered or attempted.
provide a process for conflict
resolution, if needed:
• Mediated discussion
• 2nd medical opinion
• Ethics consultation
• Transfer of care to a setting/
providers willing to pursue the
intervention
Uncertain about
outcome, or goals are
not physiological but
experiential
Consider therapeutic trial,
with the following:
• Clearly-defined target outcomes
• Agreed-upon time frame
• Plan of action if ineffective
Goals achievable and
consistent with standard
of medical care
Proceed if desired by patient
or substitute decision maker
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Evolving Conversation
Discussions about goals of care evolve through the
course of a person’s illness and are shaped by the context
of the current situation
Re-visited over time or as things change
The entire health care team has an important role in
guiding goals of care discussions
Advance care planning ultimately ensures that we are
all on the same page in providing quality care!
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