Cancer. It s about all of us. ACP/GOC CPAC Project: Nova Scotia and Manitoba. Canadian Hospice Palliative Care Association

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Cancer. It s about all of us. ACP/GOC CPAC Project: Nova Scotia and Manitoba Canadian Hospice Palliative Care Association

GOC/ACP in Canada CPAC Project Overview The purpose of the project was to build capacity in provinces and territories that were in the early stages of launching Goals of Care/Advance Care Planning initiatives. 4 provinces worked with CPAC and CHPCA to help launch programs for cancer patients within their jurisdictions. Tools and resources to implement policies, procedures and evaluation mechanisms to implement Goals of Care/Advance Care Planning were developed. 2

GOC/ACP in Canada CPAC Project Overview The long term goal: To raise the awareness of Canadians about the importance of ACP To give them the tools to effectively engage in the process The secondary goal: To prepare professionals and provide Health Care providers with the tools they need to facilitate and engage in the ACP/GOC process with their clients. Partner jurisdictions specifically in Cancer Care built on existing tools to create capacity within provinces and territories to launch GOC/ACP plans and programs. 3

Project Scope and Deliverables Identify interprofessional teams to develop and adapt GOC/ACP approaches and resources for cancer health professionals in each partner region. Create awareness and education programs through engagement with cancer patients, families, and HC professionals. Create or adapt existing tools and resources for GOC/ACP. Measure awareness and effect of education on practice related to GOC/ACP. Implement, review and evaluate GOC/ACP programs for those dealing with cancer. 4

Advance Care Planning to Goals of Care CHPCA Webinar March 21, 2017 Colleen Cash, Executive Director, Nova Scotia Hospice Palliative Care Association

Project Overview Collaboration between NSHA, CCNS, and the NSHPCA Goal: increase HCPs knowledge and comfort in facilitating GOC conversations with cancer patients in Nova Scotia. Participating sites: 1.Cape Breton Cancer Care and Palliative Care Program; 2.Guysborough, Antigonish Area Cancer and Supportive Care Program; 3.South Shore Cancer and Palliative Care Programs.

Project Team Marianne Arab, M.S.W., R.S.W, Manager of Supportive Care, CCNS Cheryl Tschupruk, M.S.W., R.S.W, Palliative Care Coordinator, NSHA Robin Urquhart, PhD, Assistant Professor, Primary Research Scientist, Dept. Surgery, Dalhousie University Colleen Cash, Executive Director, Nova Scotia Hospice Palliative Care Association Hillary Woodside, MSc., Project Coordinator, CCNS Dr. Anne Frances D Intino, MD, CCFP, FCFP, MScPalMed

Project Objectives Health care provider confidence and skills in ACP and GOC discussions; Health care provider confidence and skills in earlier identification of cancer patients who would benefit from a palliative approach to care; The number of cancer patients participating in ACP and GOC discussions; ACP and GOC experiences for patients and HCPs; and Our understanding of the implementation process to inform scaleup efforts.

Key Activities Create and provide educational opportunities for HCPs. Pilot GOC practice support tools. Develop/adapt GOC-specific resources for patients and families.

What do we mean by Advance Care Planning Goals of Care Think, Learn, Choose, Talk, Record Personal Directive Choosing a delegate What if something happens? Discussions within context of illness Understanding prognosis, goals, fears, values, trade-offs, what is important What if this happens? Decisions Specific, in the moment Guided by the above This is happening

The benefits of conversations about serious illness for Patients and Families? Patients who have conversations about their serious illness with their doctors and family members: Are more likely to be satisfied with their care Will require fewer aggressive interventions at the end of life Place less of a strain on caregivers Are more likely to take advantage of hospice resources or die at home

The benefits of conversations about serious illness for health care providers? Reduces moral distress Reduces conflict Avoids unnecessary treatment Promotes discussion about various options for care Promotes/increases awareness and understanding of resources and support, before a crisis Promotes a shared understanding within the care team

Patient/Family Expertise - Preferences - Views re: Quality of life -Wishes - Autonomy - Personal experience with death and dying - Cultural beliefs - Risk tolerance Shared decision making that combine patient values and medical expertise Health system Expertise - Medical assessment - Professional Experience - Information -Evidence - Understanding of how treatment may impact functional health

GOC Workshop: Building Competencies Review ACP & GOC Review Evidence for ACP and GOC in cancer care. Highlight available GOC resources Demo how to initiate GOC conversation Describe difference between ACP and GOC. care to align with wishes; avoid futile unwanted medical intervention at EOL. Serious Illness Conversation Guide. Talking with your clinician about the future. Role play using Guide

Teaching Methods Role Play Case Study Didactic (lecture style)

Target Audience Social Work Oncology Palliative Care Physicians GPOs Oncologists Palliative Care Nursing Cancer Patient Navigators Oncology Palliative Care Patient & Family Focus Group

Plan, Do, Study, Act Proposal Focus was on development of tools and documentation related to GOC(e.g., AHS Green Sleeve/GOC Designation Form). Interview s and Workshop s Revealed lack of readiness of HCPs to focus on documentation. Need identified was in standardized communication guide related to GOC. Actual Implementati on GOC educational workshops focused on communication training and piloting the Serious Illness Conversation Guide.

Project Success (so far...) 36 health care providers have received Serious Illness Conversation educational training. 15 piloted Serious Illness Conversation tools in practice and provided feedback to support scale-up efforts. Engaged with 6 patient/family advisors regarding Serious Illness Conversation tools and use. Have template for Serious Illness Conversations Workshops. Serious Illness Conversation tools are changing how patient care is provided, with emphasis on patientcentered perspective.

Project Success (cont) Development and Delivery of Train the Trainer Workshop (Feb 27) 18 Facilitators Trained 2 Facilitators have delivered sessions In-Practice NSHA Library Guides Workshop is a component of the Provincial Cancer Network Meeting in May

Challenges Alignment between project plan and participant needs/expectations. Inconsistent ACP/GOC tools and documentation processes (i.e. no EMR) across the province. Role clarity (e.g., Who should have the conversation?). Coordination and staff availability to attend workshops. Requirement to tailor content to audience. Recruitment among oncology to pilot tools.

Lessons Learned What worked well? Collaboration between different perspectives through project leads. Engagement of cancer and palliative care health professionals. Enthusiasm of HCPs to increase ACP/GOC knowledge and skill. What would we do differently? Engagement of HCPs in proposal development (i.e. environmental scan, readiness assessment). Include both cancer centres in overall project planning. Is the project sustainable? HCPs seem to be happy with GOC tools and feel that it is improving their communication with patients. Overall buy-in from HCPs.

Lasting Impact Initiatives demonstrate the importance of: How building competency for ACP/GOC for both public and ACP can contribute to a good death The importance of community and professional partnership Importance of community and health system leadership Consistent messaging and terminology Consistency with the provincial palliative care strategy

Advance Care Planning (ACP) & Goals of Care (GOC) at CancerCare Manitoba Four main objectives: Increase patient and caregiver awareness and understanding of Advance Care Planning. Standardization of support resources for staff and patients/caregivers on Advance Care Planning. Improved tracking of Goals of Care discussions in the electronic medical record. Increase in the patient populations that have access to Advanced Cancer Transition Appointments.

Environmental Scan with the Canadian Hospice and Palliative Care Association (CHPCA) Evaluate current National/Provincial ACP/GOC resources available for health care providers as well as for patients and family education.

Develop an Evaluation Plan & Obtain Feedback from Patients & Family members Begin to Evaluate the Integrate Advance Care Planning resources within these sessions. Determine quantitative evaluation for the Transition Appointments

Transition Appointment Information Goal: Begin these appointments in 6 Disease Site Groups

Part 1: Information for the Primary Care Provider and Patient

Part 2, 3 & 4 for the Patient, Family & Caregiver

Environmental Scan of Manitoba s Regional Health Authorities Advance Care Planning Policies

Developing an Education Curriculum & Evaluation Resources A workshop was held with various partners and stakeholders to gain their feedback and direction surrounding creating education that will meet the needs of patients and front line workers across Manitoba. Available resources were also discussed to gain feedback and suggestions to modify for Manitoba. Attendees included CancerCare Manitoba Oncologists, Nurse Educators, CHPCA, Palliative Manitoba, & employees across all health regions in Manitoba

Identifying ACP Barriers at CancerCare Manitoba 62 CancerCare Manitoba employees responded to a survey. 20 Physicians and 42 other health care providers. Some staff believed is may decrease the patients hope literature shows that ACP does not decrease hope! 75% of staff identified the patients lack of understanding and patients thinking ACP is not for them are barriers to having ACP conversations

Evaluation of Resources 80% of health care providers said they found the SPIKES and FIFE tools helpful or somewhat helpful with 50% feeling they would use the SPIKES and FIFE tools daily 74% of health care providers found the Serious Illness Discussion pocket guide very helpful or somewhat helpful in talking about Advance Care Planning. 89% of health care providers found the Just Ask booklet would be helpful to very helpful in having Advance Care Planning Discussion with patients 87% felt the Tips for Oncology booklet would be helpful and 33% felt they would use it in their daily practice.

Health care provider resources

Health care provider resources

CancerCare Manitoba Health Care Professionals Website ACP www.advanecareplanninginoncologypractice.ca

Patient Engagement 15 Patients were recruited to provide their input and evaluate the working materials for the Patient resources that were in development for the Goals of Care Project. All patients that responded said they would recommend these resources to another patient. All patients found the developed resources useful in making decisions regarding Advance Care Planning.

Patient Resources

CancerCare Manitoba Website ACP for Patients www.advancarecareplanningincancer.ca

Advisory Group Committee To provide overall input and guidance to the project team in meeting the CPAC Goals of Care Grant deliverables. Met 4 times throughout the 2016 year. Members of the working group included representation from the following: CancerCare Manitoba Health Care Providers WRHA Palliative Care Program Community Cancer Programs Manitoba Health Palliative Manitoba 4 Patients/ Family Advisors sat on this working group

Staff Education Staff education began in December 2016 with ongoing sessions throughout the month and new year. 75% of all Oncology staff throughout the province trained on Advance Care Planning and new clinic workflow improvements for Goals of Care. 92% of staff rated the education session as greater than good.

Goals of Care Levels Level of Care R resuscitation M medical care C comfort care PD patient declined NC no consensus Definition Full resuscitation including chest compression/intubation Care excluding chest compression/intubation Care directed at maximal comfort, QoL Patient requested discussion be deferred Consensus could not be reached

Goals of Care integration in Clinic workflow

Goals of Care Form & Level within the EMR

Next steps for Advance Care Planning & Goals of Care at CancerCare Manitoba Patient waiting room video to be released to bring awareness to the topic. ACP questions to be permanently added to the COMPASS form. New staff to become oriented on Advance Care Planning at hire. Yearly refresher ACP education module via Learning Management System a required competency check for staff. Transition Appointments to happen across more Disease Site Groups. Continually evaluate process and make necessary changes. Monitor the number of Goals of Care discussions across the province in an oncology setting. Research is currently being conducted surrounding Goals of Care documentation Pre vs. Post implementation of this project.

Lessons Learned: The Importance of building organizational capacity for ACP through policy and staff development. Advance care planning is still not part of everyday practice. Clinic staff will succeed with guidance and the push to facilitate these conversations. ACP needs organizational champions. The commitment of those in positions of authority to provide leadership and demonstrate their support of ACP front line health cancer care providers play a key role in championing ACP. The importance of Policy development that builds consensus amongst inter provincial partners, across regions and jurisdictions. Policy without education has little impact. Resources and tools for staff must be practical and accessible. Importance of including ACP in orientation of new staff. Must be ongoing feedback and review of practices in order to find ways to improve quality of ACP discussions.

THANK YOU! QUESTIONS? Nova Scotia: Colleen Cash: ccash@nshpca.ca Manitoba: Cody Watling: cwatling@cancercare.mb.ca Zenith Poole: zpoole@cancercare.mb.ca Advance Care Planning in Canada Chad Hammond: chammond@chpca.net Canadian Hospice Palliative Care Association Sarah Levesque: sarlevesque@chpca.net 48