Advance Care Planning

1. Advance Care Planning Promoting Inter-Professional Practice Presented March 24, 2007

2. Presented by: • Jane Keleher, MSc OT Candidate • Philip Santiago. MSc OT Candidate • Kara Braun, Masters of Theological Studies Candidate • Nadia Alam, MD

3. Definition of ACP • process of recurring clinician-patient-family communication that includes • decisions related to life-extending treatments such as resuscitation and dialysis; • quality of life issues such as symptom control; • preferences for the setting of care such as hospice; • spiritual and emotional issues as they help define medical decisions, relieve suffering, and provide meaning and dignity Dr. J.S. Weiner

4. Early project development • Originally master’s research project with Dr. Heather Lambert • Emphasis on advance directive forms – legally used or not? • Literature search highlighted move from advance directive forms to advance care planning process

5. Development with Quipped • Concept became interprofessional • Process of communication rather than the advance directive forms • Move away from legal issues • Move toward emotional and spiritual issues • Addition of Kara and Nadia to team

6. Advisors • Christine Chapman, QUIPPED • Dr. Cori Schroder, Palliative Care • Dr. Margo Paterson, Chair OT

7. Research Questions: • Can students imagine ACP as an inter-professional practice informed by a broad spectrum of beliefs and values, individual and professional? • Can inter-professional education provide a means by which students become more comfortable with ACP?  Does this make the process of ACP easier? • Can ACP become a shared responsibility through which health care professionals are better able to appreciate the benefits of inter-professional practice?

8. Facilitators objectives • build a comfortable level of competency in our own understanding of ACP • build a comfortable level of competency in providing education to colleagues

9. Module objectives for participants to demonstrate • Increased awareness of the importance of ACP and what it entails • New or expanded knowledge of the roles/responsibilities of various health care professionals in ACP, emphasizing communication • Increased awareness of how personal belief systems can affect the process of ACP • Appreciation of the importance of understanding and respecting the values and beliefs of patients.

10. The Workshop March 24, 2007 8:30 am - 12:30 pm

11. To start things off… • Expectations for the day. • Barry Smith’s video legacy. • David Rieff’s article about his mom, Susan Sontag. • Brainstorming what ACP encompasses.

12. What is ACP? ACP is a process of recurring clinician-patient family communication that includes • decisions related to life-extending treatments such as resuscitation and dialysis; • quality of life issues such as symptom control; • preferences for the setting of care such as hospice; • spiritual and emotional issues as they help define medical decisions, relieve suffering, and provide meaning and dignity Dr. J.S. Weiner

13. Historical perspective on ACP to current endeavours. • The challenges of ACP… including a little vignette: “The Untrained Clinician”.

14. “The Untrained Clinician” Mr. C is a 73-year-old man with acute leukemia. During a hospitalization for pneumonia, his physician, Dr. S, wishes to broach the subject of advance directives. • Dr. S: How are you doing today? • Mr. C: OK, my breathing is a little better. But can you give me something to sleep? • Dr. S: Sure, no problem. Anything else bothering you? • Mr. C: No, that's it. • Dr. S: Okay, well, I wanted to talk to you today about something called advance directives. Do you know what that is? • Mr. C: I think so. I'm not sure. • Dr. S: Well, it's like decisions you need to make for the future. Medical decisions. To tell us what you want us to do. • Mr. C: I'm not sure what you mean. • Dr. S: Well, if something happens we need to know what you want us to do medically. • Mr. C: Like what? • Dr. S: Like if your heart stops beating or you stop breathing, do you want us to put the tube in. • Mr. C: (confused silence).

15. Experiential Exercises • Self-reflection through visualization: The Trunk in the Attic. • The case of a 19 y.o. boy, recent high school grad, involved in a car crash while driving under the influence of alcohol. • Aspects of the case touched on dealing with distraught family, spiritual angst, the possibility of disability, and the potential for financial strain.

16. The Quality Quantity QuestionnaireRietjens et al. • In order to live a bit longer, I would clutch at any straw. • If I would become seriously ill, I would accept every treatment that can prolong my life, whatever the side effects may be. • If I would become seriously ill, I would always accept a hard-to-tolerate treatment, even if the chance of its prolonging my life was as little as 1%. • If I would become seriously ill, I would probably manage to find the strength to continue. • A moment might come in which I would say: “I have done my best, this is the limit.” • If a life-prolonging treatment would prevent me from leading a normal life, then I would rather not have it. • I can imagine some side effects being so bad that I would refuse the treatment, even if that meant a shorter life. • If I had to endure 6 months of hard-to-tolerate treatment in order to live for an extra half year, then I would not be willing to get that treatment.

17. A Workshop to Teach Medical Students Communication Skills and Clinical Knowledge About End-of-Life CareTorke et al. • Opening the end-of-life/ AD discussion • Ask permission to talk. • Ascertain the patient’s understanding of the disease. • Ask about the patient’s emotional state. • Introduce the topic. • May need to reassure patient that you are not raising these issues because he/she is about to die. • Assess pt preferences re: end-of-life care • Explain treatment options at the end of life. • Gain a deep understanding of patient preferences.

18. Torke et al. continued. • Critical steps to creating an AD • Identify pt preferences • Identify surrogate decision maker(s) • Plan to communicate with SDM re: preferences • Plan to communicate with health care providers re: preferences • Document preferences and SDMs • Supportive Closing • Emphasis on active and engaged supportive care of the pt • Arrange follow-up.

19. Living Well Interview QuestionsSchwartz et al. • Maintaining or fulfilling what activities/ experiences are most important for you to feel your life has qulaity or for you to live well? (What makes you happy?) • What fears or worries do you have about your illness or medical care? • If you have to choose between living longer and quality of life, how would you approach this balance? • Are there any special events/ activities that you are looking forward to? • What needs or services would you like to discuss? • Do you want information about anything related to your present or future care? • What sustains you when you face serious challenges in life? • Do you have any religious or spiritual beliefs that are important to you? • In what way do you feel you could make this time especially meaningful to you? • What do you hope most for those closest to you?

20. Fitchett’s model of spiritual assessment • 1. Beliefs & meanings: higher purpose, meaning of life. • 2. Authority & guidance: Individual/ group/ resource whom they trust. • 3. Experience & emotion: perception of events and circumstances. • 4. Fellowship: formal/informal community. • 5. Ritual & practice: significance in activities, traditions. • 6. Courage & growth: dealing with doubt, change and challenges. • 7. Vocation & consequences: their calling.

21. Emotional and Cognitive Barriers • Weiner suggested that discussions around ACP often raise strong emtions (anxiety, frustration, anger, sadness, hopelessness). • If these emotions are not properly dealt with, they can become foci for subsequent negative behaviour.

22. Reframing Barriers to ACP • Cognition: People generally do not want to discuss issues related to death and dying. • Consequence: Displacing anxiety onto the other (patient, family, your loved one), depriving them of an important opportunity to have input into their care. • Reframing Task: Shift this generalization to consideration of what the particular patient needs: • What are your thoughts about your illness? • What is the hardest part for you?

23. Reframing Barriers to ACP • Cognition: I will take away hope if I bring up ACP • Consequence: This narrowly defines hope as ‘hope to not die,’ which then makes us feel hopeless and helpless. • Reframing Task: Redefine other kinds of hope we can offer.

24. Reframing Barriers to ACP • Cognition: If I cannot offer cure I have failed; if my services are not needed there is nothing for me to do. • Consequence: Possible to experience humiliation, shame or helplessness. • Reframing Task: Consider the differences between curing disease and healing suffering. • Examine your openness to assume roles other than curing disease.

25. Appreciating Our Unique Functions in ACP • Mentor input: selected readings, personal experience/expertise. • Sharing circle: participant input and experience.

26. Results of the Workshop

27. Evaluation • Post-Module Questionnaire • 9 Likert scale questions • 6 open-ended questions • N = 20 • 2 Physiotherapy, 2 Theology, 2 Medicine, 6 Nursing, 8 Occupational Therapy

28. Quantitative Results • ACP: What it entails • Increased general understanding of ACP • 100% agreed or strongly agreed • Increased appreciation of the importance of ACP • 100% agreed or strongly agreed

29. Quantitative Results • Inter-professionalism in ACP • Increased understanding of one’s own professional role/responsibility in ACP • 65% agreed or strongly agreed • 20% undecided • 15% disagreed or strongly disagreed

30. Quantitative Results • Inter-professionalism in ACP • Increased understanding of the roles/responsibilities of other professionals in ACP • 85% agreed or strongly agreed • 10% undecided • 5% strongly disagreed

31. Quantitative Results • Role of personal belief systems in ACP • Increased awareness of how one’s own values and beliefs influence ACP • 95% agreed or strongly agreed • 5% unresponsive • Increased awareness of the importance of understanding and respecting the patient’s values and beliefs in ACP • 100% agreed or strongly agreed

32. Qualitative Results • If you were to discuss ACP with a patient or a loved one, what would be some of the key components you would consider? • 3 main themes: • Empowering the patient (70%) • What ACP entails (65%) • Personal belief systems (55%)

33. Qualitative Results • What do you perceive to be the benefits to an inter-professional approach to ACP? • 5 main themes: • Synergistic team effort in ACP (50%) • Specialist role in ACP (40%) • Generalist role in ACP (10%) • Coordinated communication (5%) • Acknowledgment of patient affect (5%)

34. Qualitative Results • What do you perceive to be the challenges to an inter-professional approach to ACP? • 4 main themes: • Coordinated communication (40%) • Time constraints (30%) • Specialist role in ACP (15%) • Lack of professional curriculum (10%)

35. Qualitative Results • What was the highlight of the module? • 2 main themes: • Workshop design (90%) • What ACP entails (20%)

36. Qualitative Results • What did you enjoy least about the module? • 2 main themes: • Too short (50%) • Workshop design (30%)

37. Significance of the study: • explores an area of practice not well documented in the literature on interprofessional education. • lack of educational initiatives on advance care planning • valuable in the training of students and practitioners alike. • invites exploration of future healthcare team members’ values and beliefs • promotes awareness of the client’s vantage in ACP

38. Future applications • Deliver module as part of curriculum for healthcare and theology students • Deliver module to interprofessional teams in hospitals and long term care facilities • Adapt module for general public • Know end of life care wishes earlier • Normalize conversation around death and dying