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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

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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

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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

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Outline What is ALS? Evolution of ALS advance care planning presentation Experiential exercise Discussion Wrap-up

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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

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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.

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Video

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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

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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

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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

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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

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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

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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

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Discussion Responses to the presentation? How will this experience impact your practice? What is interdisciplinary about this presentation?

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Interdisciplinary Practices Collaborative Quality of relationship between team members Team self-care strategies Holistic

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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

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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

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Bibliography Andersen, Peter Munch, Borasio Gian Domenico. Et al. Good practice in the management of amyotrophic lateral sclerosis: Clinical guidelines. An evidence-based review with good practice points. The EALSCs Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis. (2007); 8: 195-213. Benditt, Joshua O.k Smith, Timothy S. and Mark R. Tonelli. Empowering the individual with ALS at the end-of-life: Disease- Specific Advance Care Planning. Muscle and Nerve 24 (2001) 1706-1709. Borasio, G D., Voltz, R. and R.G. Miller. Palliative Care in Amyotrophic Lateral Sclerosis. Neurologic Clinics. 19: 4 (2001) 829- 847. Bradley, Walter G. Advance Care Planning in ALS. Muscle and Nerve. June 2002. 923-925. Burchardi, Nicole, Rauprich, Oliver, et al. Discussing Living wills. A qualitative study of a German sample of neurologists and ALS patients. Journal of the Neurological Sciences 237 (2005) 67-74. Forrest, Cynthia and Derrick, Christina (2010) Interdisciplinary Education in End-of Life Care: Creating New Opportunities for Social Work, Nursing, and Clinical Pastoral Education Students, Journal of Social Work in End-Of-Life & Palliative Care, 6: 1, 91-116. Ganzini, Linda, Johnston, Wendy S., and Maria J. Silveira. The final month of life in patients with ALS. Neurology 59 (2002). 428-431. Mitsumoto, Hiroshi, Rabkin, Judith G. Palliative Care for Patients with Amyotrophic Lateral Sclerosis. Prepare for the Worst and Hope for the Best. JAMA 298:2 (2007) 207-216. Silverstein, Marc D., Stocking, Carol B., Antel, Jack P. et al. Amyotrophic Lateral Sclerosis and Life-sustaining Therapy: Patients Desires for information, Participation in Decision Making, and Life-Sustaining Therapy. Mayo clinic Proc 66: 906- 913, 1991. Simmons, Zachary. Management Strategies for Patients with Amyotrophic Lateral Sclerosis From Diagnosis Through Death. The Neurologist. 11: (2005) 257-270.

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Contact Information ALS Clinic The Ottawa Hospital Rehabilitation Centre 505 Smyth Rd, Ottawa, ON K1H 8M2 Vivian Stang, Chaplain vstang@toh.on.cavstang@toh.on.ca Heather Allen, Social Worker hallen@toh.on.ca hallen@toh.on.ca Susan McNeely, RN smcneely@toh.on.casmcneely@toh.on.ca

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