Dying with Dignity
Advanced Care Planning and
Patient Rights and Advocacy
Margo Holland & Gregory Robinson
January 2013
Welcome and Introduction
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Allan to introduce and house keeping
Overview of the Day (schedule)
Safe Space Contract
Objectives
Safe Space Contract
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Confidentiality
Step up; Step back
Not a therapy group
Passing is permitted
Active Listening
Respect diversity and value our differences
I will not interrupt
Listen and speak from our heart
Take care of yourself, be gentle and break if needed
Others?
• And, The Quiet Room (to take a breath and ponder when needed)
Objective of Workshop
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Educate
Provide skills and tools
Clarify Terms
Create your own Advanced Directive
Video Presentation
• Speak Up Video (CHPCA Front page online Speak
Up Video – YouTube)
• Advance Care Planning Conversations (CHPCA
video – YouTube)
• You may also wish to listen to “Do Not
Resuscitate”, With Dr. Brian Goldman, While Coat
Black Art. (noting the importance of having
thought out an Advanced Directive before tragic
illness strikes)
• www.cbc.ca/whitecoat/popupaudio.html?clipIds
=2313383178
Can you describe or tell a story
about a difficult death
experience you may have lived
through, witnessed or heard
about?
• Can you describe or tell a story
about a good death
experience you may have lived
through, witnessed or heard
about?
Dying with Dignity
5 Critical Planning Steps
There is much more to writing an Advance Care Plan than simply filling in a form. The
most important part of the planning process is to take time for reflection and
discussion to ensure your Plan reflects your values, beliefs and wishes.
Step 1
Understand all Your Choices.
Step 2
Reflect and Discuss
Step 3
Make Your Decisions
Step 4
Document Your Decisions
Step 5
Communicate Your Decisions and review yearly
Small Group Discussions
• What are some of the circumstances, health
conditions, and interventions (medical
treatments) that we see at the end of life?
• What choices do we have for care at end of
life?
• What would you wish to have happen at the
end of your life?
• Can you create a list of a few principles for “A
Good Death”?
Sample ADP DWD
• Walking through DWD’s Advanced Directive
• Case Example for this: 67 year old with
terminal cancer; less than a few months to
live; relentless nausea and vomiting (early
bowel obstruction); excruciating abdominal
pain not relieved by narcotics or other pain
medications
• Home at this point with husband of 42 years
Patient Rights and Advocacy
Dying with Dignity
While the wording of the applicable legislation varies by province, in general, as a Canadian you have
the following rights and options:
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Right to be Fully Informed of all Treatment Options
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Right to have Advance Care Directives Recognized
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Right to have Substitute decision-maker recognized
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Right to Change Doctors
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Right to Discontinue/Refuse Treatment.
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Right to refuse Cardiopulmonary Resuscitation (CPR)
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Right to Refuse Food and Drink (VSED)
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Right to end your own life
Video Presentation
• DWD Blog – Aimee Doolittle (DWD video
online – YouTube)
• Australian clip on choice (DWD Site)/Banned
Euthanasia Ad
http://www.dyingwithdignity.ca/watch/index.ph
p
Patient Rights and Advocacy
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First do no harm!
When to use?
To do what?
How to accomplish and with whom?
Patient Advocacy Scenarios
1) ICU setting - intubation of comatose post
trauma young patient (doctor/wife);
2) Intractable pain from cancer at the end of life
(palliative care nurse/son [daughter])*
3) Home care patient dying of AIDS with family
stretched to cope (family doctor/lover
[parent?])*
4) Someone dying of a neuromuscular disease who
wishes assisted dying [doctor/friend (patient has
no supports for care)]
*Note: jointly vs. independently appointed SDM
Closing and Wrap Up
• Final thoughts (Margo)
• Evaluation (Margo)
NUMBERS COUNT!
YOUR
VOICE FOR CHOICE
IS
CRITICAL!
WORKSHOP EVALUATION
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Where did you hear about this session?
For you, what was the most valuable part of the
workshop?
Was the content or information sharing for this
workshop what you expected?
How was the process and flow to the day for you?
Can you provide feedback about the roles of the
facilitators?
On a scale of 1 (lowest) to 5 (highest) this
presentation met my expectations:
Improvements I would suggest are:
What other seminars/topics on death and dying
would you like to see presented?
Do you have any other comments?
Thank-you
You can make a difference
in your own unique way.