Advance Care Planning Development of an interdisciplinary presentation for ALS patients and their...
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Advance Care Planning Development of an interdisciplinary presentation for ALS patients and their caregivers Vivian Stang, Chaplain, Certified Specialist
Advance Care Planning Development of an interdisciplinary
presentation for ALS patients and their caregivers Vivian Stang,
Chaplain, Certified Specialist Heather Allen, MSW, RSW Susan
McNeely, RN ALS Clinic, The Ottawa Hospital Rehabilitation
Centre
Slide 2
Death is like the sun, [it] cannot be looked at steadily or
directly. We cannot, as conscious human beings, easily contemplate
our own non-existence. Francois de la Rochefoucauld 1613-1680
Slide 3
Learning Goals Through experiencing an advance care planning
presentation share strategies to discuss difficult end-of-life
planning issues with patients and families Understand the benefits
of a holistic approach to advance care planning Gain an awareness
of the main elements of interdisciplinary collaboration in this
presentation
Slide 4
Outline What is ALS? Evolution of ALS advance care planning
presentation Experiential exercise Discussion Wrap-up
Slide 5
What is ALS? A disease of the nerves that supply voluntary
muscles Communication, swallowing, mobility and breathing Average
age at diagnosis is 40-70 years old A rare disease 2 cases
diagnosed per 100,000
Slide 6
What is ALS? There is no cure Prognosis is 2-5 years Most
clients stay at home It impacts families physically, financially,
emotionally and spiritually.
Slide 7
Video
Slide 8
Slide 9
ALS Team Out-patient service Team consists of: Physician,
PT,OT,SLP,RD, Social Worker, Chaplain, Pulmonary team and Nurse
Focus on function and quality of life Follow clients every 3-4
months and as needed
Slide 10
Evolution Challenge: how and when to address end-of-life
planning 2006 - group format introduced to provide timely and
consistent information Disease specific advance directive developed
Group format most effective use of team resources Team self-care -
impact of multiple family meetings Initially respiratory status
used as criteria
Slide 11
Evolution 2009-10 informal feedback indicated desire to have
end-of-life discussions earlier 2010 - decision to revise criteria
for invitation 2010 - enhanced holistic approach to presentation
with focus on addressing fears/comfort If issue has not arisen,
team still use respiratory status as criteria
Slide 12
Where are we now? Focus on opening/facilitating discussion of
difficult issues between client/family/clinic Held regularly 4-6
times per year Team assesses client readiness
Slide 13
Literature Review Interdisciplinary clinics are best practice
standard for ALS clients Early discussion of PEG and ventilation
issues Early discussion of bioethical, spiritual, psychosocial and
financial issues Most clients prefer to experience some physical
changes prior to discussion More specific = more effective
Slide 14
Experiential exercise Condensed version of advance care
planning presentation Assume role of person described on card
Experience presentation through your role Consider: comfort, hope,
fears, concerns
Slide 15
Slide 16
Discussion Responses to the presentation? How will this
experience impact your practice? What is interdisciplinary about
this presentation?
Slide 17
Interdisciplinary Practices Collaborative Quality of
relationship between team members Team self-care strategies
Holistic
Slide 18
Resources Link for Caring for My Spirit booklet
http://www.headwatershealth.ca/Gift%20for%20my%20Family%20and%
20Friends.pdf
http://www.headwatershealth.ca/Gift%20for%20my%20Family%20and%
20Friends.pdf Link for Go Wish game gowish.org gowish.org Living
Will, Living Well: reflections on preparing an advance directive.
Godkin, M. Dianne. University of Alberta Press 2008. Link for What
is Advance Care Planning?
http://www.advancecareplanning.ca/about-advance-care-planning.aspx
http://www.advancecareplanning.ca/about-advance-care-planning.aspx
Slide 19
Normally we do not like to think about death. We would rather
think about life. Why reflect on death? When you start preparing
for death you soon realize that you must look into your life now...
and come to face the truth of your self. Death is like a mirror in
which the true meaning of life is reflected. Sogyal Rinpoche
Slide 20
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