Practical Understanding and Applications
NSPCN Huntsville Oct 21, 2014
Dr. Rebecca Verhaeghe
Advance care planning
Define:
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Advance Care Directives
Capacity
Consent
Substitute Decision Maker/POAs/Family
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Deeper practical understanding of the purpose
and meaning of capacity and consent
Enhanced knowledge as to your role and
responsibility in acquiring, communicating and
implementing wishes, values and beliefs of
your patient
Ability to identify/evaluate your own values
and biases and set boundaries consistent with
patients needs
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Speaks to the “quality of understanding”
regarding a specific treatment decision
Can patient understand and appreciate the
basics of what will happen if they accept or
refuse a certain treatment or intervention
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Not a value judgement, not based on “right or
wrong” treatment choices
Does not involve coercion by healthcare
providers
Not carved in stone- can change mind, capacity
can fluctuate
Not based on a diagnosis or screening test
Not a one time stop- ensure/assess
understanding each and every time healthcare
decision
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Capacity can fluctuate. “ A health care provider
can rely upon previously documented evaluations
and assessments , however the health care provider
should review capacity as appropriate during
interactions with patient.
Two-part test:
The patient can understand the information
relevant to making a decision about the proposed
treatment and
Is able to appreciate the reasonably foreseeable
consequence of their decision.
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Identify who can give consent—patient, SDM
and if consent family members/other
significant others
Patients/families wishes should be elicited
Context is crucial- take into account patients
goals/values/beliefs.
Someone who makes decisions on your behalf if
you are incapable of making them yourself.
 Role of SDM: To make the same personal care
choices that you would have made in that situation
and follow your instructions if you gave any.
 acts only when you can’t make decisions yourself.
May be temporary or indefinite
 You cannot choose:
• Someone who is paid to provide you with personal
care
• Someone who is mentally incapable
• Someone who is under the age of 16
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The documentation of your SDM in event
you become incapable of making a
particular decision.
 The document appoints your SDM and
gives them the power to make decisions
about all aspects of your personal care.
• Health care
• Shelter, clothing, nutrition, hygiene
• Personal safety
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Inform/outline the nature of proposed
treatment/intervention (CPR, other potentially
Life-Sustaining Treatments
Outline expected benefits (Right to receive)
Likely to benefit
Intervention has uncertain/unlikely benefit(
lean towards treatment- suggest trial and
suggestion to withdraw if benefit not seen
Patient almost certainly will not benefit
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Purpose- to assist patients in making choices and
articulating their wishes about end of life care
 Nurses (CNO- guiding decisions about end of life
care-2009)
Core themes
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Communication: communicate with patients and
members of the inter-professional team to guide
informed discussion about PATIENTS GOALS
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Implementation: advocate for the PATIENTS
WISHES and help implement the clients treatment
and end of life care wishes
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Clarify patients expressed wishes regarding
end of life care (previous advance directive,
verbal/written expressions to POA/SDM
Ongoing Review/update of patients “Plan of
treatment” and communicate this to
patient/family (with consent), interprofessional team)
Document
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Prior to implementation -Ensure the plan of treatment
involved the patient/family/inter-professional team
and the patient has given informed consent
Create a safe place for important conversations
Tips- start open ended- make a connection- create a
context…create a common ground. Give the patient a
sense of control/self determination
1.
Normalize---set expectations. Introduce yourself and
your role “
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“as part of your care team I, and other caregivers
will be making the effort to involve you in the type
of care and support you need. There are important
questions that will be asked- the focus is not to
frighten or bother you but to make sure that your
wishes and needs remain the focus of our efforts.. Its
best to have these discussions when you are feeling
well enough”
DO YOU HAVE ANY QUESTIONS?
IS THERE ANYTHING THAT YOU HAVE THOUGHT
OF- THINGS THAT YOUR WOULD WANT OR NOT
WANT- (who have you shared this with, is there anything
you want to share now (If not clear- clarify SDM in simple
language (if you were too unwell at a given time to
communicate your wishes, who would you choose to speak
on your behalf)
CONTENT/Information Gathering
Medical
? “what is your understanding of your diagnosis
?”what do you think your prognosis is “how long do you think
you have to live”- Have you asked or been told what to expect?
Are you the type of person that would want to know? If not is
thee anyone in your circle of family and/or friends that would
want to/need to know”
? “who have you shared this with” “Is there anyone else you
want to know, be updated about your conditions – is there
anyone you don’t want information given to—ok to explore why
? “do you feel that you and your family/caregivers are on the
same page
Personal
Normalize- its normal to experience feelings of anxiety
when faced with uncertainty. Even if you are not usually
an open person, we want you to know it important to share
your emotions and reactions to what is happening to you.
Anger, fear, regret, sadness– can all be a part of the process
Tip-Provide the opportunity to express personal
concerns—
Open ended- Is there anything that you are worried about?
As you reflect on your life?are there any unfinished business, wishes-important
celebration/milestones you hope to meet/
Need relief from feeling they are a burden to
others/or need to please or be strong for others
(sign on door, boundary setting)
 Opportunity for closure- unfinished businessresolution “Are we good?”
 Managing conflicts with family members/interprofessional team
Closure of difficult conversation- “ none of us have
control over this disease process, or when your last breaths
will be taken… but we can all work together to make this the
most peaceful experience possible, and honor your life and
relationships- embracing what is most important to you
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Closure of conversation
Make sure opportunity given to communicate
personal concerns
-affirmation-”while you are physically unwellyou are still a whole person- worthy of
respectful and compassionate care – every
effort will be made to provide you with the
dignity and privacy you require”
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Establish sense of preparedness, control, meaning
(preserve autonomy/self determination)
-MEANING- very individual- Outcome depends
on patients “often dependant on interpretation” of
events (respect cultural, religious personality
factors)- is ok to reframe-as long as not pushing
your own agenda “sometimes people who left the
faith of their parents and childhood desire to come
back to it when facing death…. That’s ok
Requires Input from all involved in circle of care
MD/NP ROLE- update re changes in the body,
identify shift in direction- can be less involved as
transition progresses
 Focus on what will make a difference to
patient- physical, emotional, psychosocial,
spiritual
 Do no harm- avoid over-sedation and
uncontrolled pain
 Don’t avoid talking about the end
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Preparing- “are last rights important to you?”
“is it important to have someone with you at
the end?” everyone is different
Have you communicated your thoughts about
funeral/celebration of life ceremony
Legal/financial arrangements
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“yesterdays history---tomorrows a mysterytoday is a gift- and that is why it is called the
present” today- the focus needs to be on easing
your suffering- provide opportunities for
meaningful interaction.
Our role is not to hasten death- or to prolong
suffering…. FIND THE BALANCE
Be hopeful—but realistic
Letting go—songs, poems, permission giving
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A discussion between 2 or more people where:
Stakes are high
Opinions vary ( disagreement/opposing
opinions anticipated)
Strong emotions
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Advocate for the patients needs
Validate the family members fears and concerns
Educate about your role and responsibilities as a
care provider
Don’t get into a power-struggle
Find common ground- “If your mother could
speak, what would she hope you would do”
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Avoid conflict by having discussions early
Address conflicts with team privately- work
towards consensus of team members
Correct misinformation/misunderstanding
and answer questions
If conflict continues – offer a referral to another
professional /facilitate second opinion
Consult- Ethics, offer resources to patient
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HEALTH CARE CONSENT ACT
OFFICE OF PUBLIC GUARDIAN AND
TRUSTEE, MAKING SUBSTITUTE HEALTH
CARE DECISIONS
MINISTRY OF ATTORNEY GENERALCAPACITY ASSESSMENT OFFICE
Advocacy for the elderly- includes legal
CCAC- capacity evaluation related to LTC
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Know your strengths and weaknesses (our greatest
strength can become a weakness when under stress)
Know and be able to identify your biases. This will
protect you from projecting your values on to others.
Establish good boundaries.
Don’t feel pressured to answer questions or provide
information outside of your scope of practice. Ask
for help.
If you make a mistake, exercise poor judgment,
don’t keep it to yourself.
Take care of yourself---so you can care for others in a
professional and compassionate manner.
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Understand how your own
experiences/values/worldview impact your
approach to end of life and treatment
discussions
Develop internal filter/boundary setting that
respects the individuals right to self
determination
Engage – in developing your skills/comfort Passion + Knowledge + Skills = Impact
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ENGAGE- catch the opportunity to
communicate
Consult-share your experiences with your
teammates
Access to best practice guidelines
E-learning- modules
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Passion + Knowledge + Skills = Empowered
Attitude, self reflection and Insight =
Connection
Supportive System-Shared focus-Common
Goals= Culture of constructive care
CPSO-decision-making for End of Life policy # 1-06 2006
 Quality End of Life Care Coalition of Canada
Blueprint for action 2010-2020
 WHO- Palliative care for older people : better
practices, 2011
 Canadian Hospice Palliative Care Association
Cd/training guide on educating future Physicians
in Palliative and end of life care 2014
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CNO Guiding Decisions About End-of –Life
Care 2009
Speak Up- start the conversation about end of
life care; www.advancecareplanning.ca
Polypharmacy- Improved renal and cognitive
function in a hospice patient www.annalsof
longtermcare.com vol 22 issue 10 October 2014
CAPC- Center to advance palliative care- What
Patients Want www.capc.org
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E-Learning modules- South West Hospice
Palliative Care Network- Advance Care
Planning info@swpalliativecare.ca
Social Work- code of ethics and standard of
practice
Crucial Conversations Tools for Talking when
the stakes are high. 2012 (Patterson, Grenny ,
McMillian Switzler )