Message from the Chairs

Project Team Updates

News Apr

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Welcome to the Spring newsletter and the beginning of the third year of our project. It’s been a busy time for all teams, with the implementation of tool testing, new publications, webinars and preparations for our Spring Research Team Meeting underway.

This newsletter profiles Dan Kobewka, a general internist at the Ottawa Hospital, and an Assistant Professor at the University of Ottawa. Dan is in the early stages of introducing the Serious Illness Care Program on the medicine wards at the Ottawa Hospital. We are also including a feature on Hospice Palliative Care Ontario and their work as a partner to the iCAN-ACP project, as well as updates from our teams.

We hope you enjoy the newsletter, and welcome any feedback or suggestions for future issues.

John You & Michelle Howard Project Co-Leads, iCAN-ACP Study

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Increasing awareness and uptake of ACP tools among marginalized and ethnic minority frail elderly Canadians – November 2018, Diversity Access Team

Development of a questionnaire to measure death preparedness in family caregivers of persons with dementia – February 2019 - Pamela Durepos, HQP with the Long-Term Care Team, McMaster University

Feasibility Pilot of the Implementation of an Adapted Serious Illness Conversation Guide Pathway in a Family Medicine Patient-Centred Medical Home. Tan A, Paterson C, Bernacki R, Urquhart R, Barwich D, Howard M. North American Primary Care Research Group (NAPCRG), Chicago, United States, November 10, 2018.

Advance Care Planning International (ACP-i) Conference, Rotterdam, Netherlands “While my thinking is clear”: Outcomes from a feasibility pilot of a multidisciplinary, step-wise pathway for ACP in Family MedicinePresented by: Amy Tan, Cumming School of Medicine, University of Calgary Family Medicine Canada

Implementation of the Serious Illness Care Program in the hospital setting: emerging results of a multi-site quality improvement collaborative.Presented by: Jessica Simon, iCAN-ACP Researchers, University of Calgary Cumming School of Medicine Canada

Condition-specific pamphlets to improve end-of-life communication in Long-Term Care (Sussman/Kaasalainen/Strachan/Bourgeois-Guerin/Durivage).

Ethical issues in nursing home palliative care (S. Kaasalainen).

Unpacking ‘the cloud’: a framework for implementing public health approaches to palliative care (Michelle Howard).

Short Graphic Values History Tool for decision-making during serious illness (You/Allatt/Howard/Simon/Sudore/Tan/Bernard).

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Recent Webinars

iCAN-ACP Presentations at Recent Conferences

Recent Publications by iCAN-ACP Researchers

The Serious Illness Conversation Program (SICP) provides a structured approach to leading person-centered conversations about goals of care, and is being tested as part of the iCAN-ACP project. Health care teams, however, need to be fully engaged to successfully implement the program. Dan Kobewka, a member of the iCAN-ACP Hospital Team, recently worked with health professionals at the Ottawa Hospital to provide training for the SICP, and found that relationship building is fundamental to integrating the program in to the hospital’s culture.

Dan says that the Ottawa Hospital was in the midst of a randomized controlled trial and wasn’t initially considering running the SICP at the same time. The Vice-President of the regional cancer program and the Chief of the Department of Medicine, however, had identified communication around serious illness as a key area for improvement. “They learned about the iCAN-ACP project and what we were doing and wanted to get involved,” says Dan. “We decided to get a team together to approach each division in Medicine to participate.”

Research has shown that a patient’s wishes for care, especially their preferences for CPR, often don’t match written orders in their chart. Dan Kobewka recently conducted a randomized controlled trial with 200 patients at the Ottawa Hospital to test both a values tool and a CPR video decision aid to determine whether these tools can help with decision-making around CPR, and if they could improve concordance between patient preferences and chart orders. Results are being compiled for publication. Dan is also working on determining how storytelling can help patients express their values more clearly.

Dan asked his colleagues in the Division of General Internal Medicine if they were interested in working on this project together. The implementation team that came together has diverse interests and relationships across the division. At the end of the day, 90% of division members indicated interest and 75% participated in the SICP training sessions. Documentation of Serious Illness Conversations will become part of the hospital’s Electronic Medical Record in June 2019, alongside an automated mortality prediction tool that can identify patients who are most in need of having these conversations.

Dan notes that personal relationships were key to engagingstaff in the process. “Our team included early and late career professionals, and each had relationships throughout the hospital,” he says. “This resulted in a higher level of trust and a willingness to participate in the sessions.”

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Research Profile

Testing intervention tools for decision-making around Cardio Pulmonary

Resuscitation (CPR)

Relationships are key to engaging hospital teams

HPCO hosts a Health Care Consent Advance Care Planning Community of Practice (CoP) that supports an expert Leadership Advisory Team as well as Regional and Organizational Champions across the province, and leverages strong partnerships with provincial associations across many sectors. The CoP was created to support clinicians, administrators, caregivers, policymakers, researchers, educators and leaders who are committed to the promotion of HCC ACP GoC in Ontario. They also manage the Ontario Speak Up campaign and website, which includes a wide range of tools and resources.

Julie notes that research projects like the iCAN-ACP study are key to developing strong and supportive practices that make the best use of

valuable resources. “Partnering with iCAN-ACP researchers enhances the work of our Community of Practice and enables us to work jointly and in alignment to ensure compliance with the Ontario legal framework,” she says. “This project provides us with vital information for improving the end-of-life experience for elderly Canadians living with frailty.”

Event Calendar

Hospice Palliative Care Ontario (HPCO) is the provincial association of hospices and palliative care providers, professionals, and volunteers throughout Ontario. With more than 500 members across the province, the association has representation from hospices, long-term care homes, palliative care programs, regional hospice palliative care networks, physicians, nurses, case managers, social workers, volunteers, and community members interested in hospice palliative care. They are also a major champion for advance care planning and the iCAN-ACP project.

Julie Darnay, the Manager, Partnerships and Communities of Practice, says that HPCO is stewarding provincial leadership for health care consent, advance care planning and goals of care through the Ontario Palliative Care Network three-year action plan. The goal is to continue to develop and update materials that align with Ontario’s legal landscape and quality standards. HPCO also works with Health Quality Ontario on exploring compliant Health Care Consent / Advance Care Planning / Goals of Care (HCC ACP GoC) quality indicators for Quality Improvement Plans (QIPs) across the hospital, primary care, home, community care and long-term care sectors.

“Health care consent and advance care planning for frail older adults is a priority for us,” says Julie. “The iCAN-ACP research project is a natural fit, given our goals to connect real-world clinical and research experience to develop toolkits that are compliant and evidence-based.” Part of that work involves the support of an Ontario-focused Research Working Group that includes members of iCAN-ACP.

Partner Profile: Hospice Palliative Care Ontario

Team Updates:

Primary Care Team:• The primary care team is now implementing their ACP process in three family practices in Alberta, British Columbia, and Ontario. Almost 80 patients have been invited and are at varying stages of recruitment and participation. • The ACP process includes education about ACP, a values clarification exercise, and a conversation with their family physician using elements of the Serious illness Conversation Guide. Family practices have been working to iteratively improve the process and refine their toolkits. • Dr. Amy Tan, a primary care site lead, recently presented preliminary pilot results of the care pathway used in her team-based primary care clinic at the ACP-i conference in Rotterdam, Netherlands in March.• Primary Care Team Research Coordinator Dawn Elston recently created a video for the CFN Frailty Contest for Trainees. 4

Team Updates (continued):

Long-Term Care Team• The Long-Term Care Team continues to work with participating long-term care homes by connecting with staff in the form of Champion Team Meetings held on regular basis. During these meetings, research staff are able to provide study updates to the sites and get feedback on study activities. • The team is also involved with Family and Resident Council Meetings. Research staff have been invited to attend these meetings to present the project to family and resident representatives at each site. This helps with recruitment and promotion of the project, as well as being able to answer any questions they may have.• The team is continuing to recruit and enrol residents and family members into the project. To date, there are 63 participants across 3 participating sites. Participants are asked to complete an ACP toolkit called the Conversation Starter Kit and provide feedback in the form of pre/ post surveys and interviews. This phase of the project will continue until June 2019. • Principal Investigator Sharon Kaasalainen will be presenting baseline findings from the focus groups completed with long-term care staff at the 16th World Congress of the European Association for Palliative Care (EAPC) in Berlin, Germany in May 2019.• Principal Investigator Sharon Kaasalainen and the long-term care research group has been awarded a CIHR Project Grant which is expected to start in April 2019. It builds on previous CFN-funded work involving the implementation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) Program in a total of 8 homes throughout Alberta, Saskatchewan, Ontario and Manitoba. The project is an Randomized Controlled Trial (RCT) and will run for a duration of 5 years. The team plans to further the spread of the SPA-LTC program and evaluate the implementation and effectiveness of it using a total of 18 control and 18 intervention homes. The ultimate goal is to explore what needs to be done to adapt/contextualize the SPA-LTC program so that it can be scaled up across diverse settings and provinces.

Hospital Team:• The hospital sector in iCAN-ACP is a multi-site quality improvement collaborative to adapt and implement the Serious Illness Care Program (SICP) on the medical wards at four hospitals in Canada (Foothills Medical Centre in Calgary, Montreal General Hospital, The Ottawa Hospital, Hamilton General Hospital). Implementation is in full swing at our sites in Calgary and Montreal.• At the Hamilton site, after 18 months of implementation supported by a CFN-funded Unit Champion (bedside nurse), we have transitioned to a more sustainable model of the program that is more embedded in current workflow and is leveraging existing staff. We have created an interprofessional SICP Resource Team consisting of frontline clinicians to inform continuous quality improvement to sustain this work on an ongoing basis.• Evaluation of clinicians’ experiences with the program has been completed in Hamilton and is in process at Calgary• The Ottawa team, led by Dr. Daniel Kobewka, was recently successful in obtaining a local $60K Innovation Fund grant to support implementation of the SICP within the Department of Medicine at The Ottawa Hospital. Their team is in active planning stages and have trained approximately 20 internists in the use of the Serious Illness Conversation Guide in skills practice sessions, with direct observation and feedback from faculty with expertise in serious illness communication.• iCAN-ACP Principal Investigators Drs. Dev Jayaraman and John You, with support from the BC Centre for Palliative Care, ran an 8-hour Serious Illness Conversation Guide Train-the-Trainer event in Montreal in February to train other clinicians in the use of the Serious Illness Conversation Guide.• iCAN-ACP Principal Investigator Dr. Jessica Simon presented emerging findings from our quality improvement collaborative at the ACP-i conference in Rotterdam, Netherlands in March. 5

This research is funded by Canadian Frailty Network (known previously as Technology Evaluation in the Elderly Network,

TVN), supported by Government of Canada through Networks of Centres of Excellence (NCE) Program.

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Diversity Access Team:• Work by the Diversity Access Team has been focused in the long-term care and primary care sectors. In the long-term care sector, focus groups were held with staff, residents and families at two care homes, one catering to an exclusively Chinese population and the other having a multi-ethnic population. Following the focus groups, two education sessions were held at each home for 46 staff led by education consultant Jane Webley in November and December, 2018. Jane provided training on starting end-of-life conversations with residents and families and introduced the Conversation Starter Kit Tools. Pre- and 6-8-week post-session follow up data have been collected to assess the uptake and impact of the training. • A focus group was held and follow-up is ongoing for persons who have or had a loved one from the LGBTQ community living in a long-term care home (LGBT LOCH sub-study) in British Columbia. Ethics approval from Dalhousie University is being sought for a similar study in Halifax.• Recruitment is underway for a focus group with persons who have a loved one from the South Asian community living in a long-term care home in British Columbia.• In the Primary Care Sector, findings from the Older Men Living with HIV/AIDS sub-study were presented at an AIDS Community Care Montreal “Dinner and Discussion". Themes that will be featured in the project write-up include depression, isolation, Post-traumatic stress disorder (PTSD) and trauma around end-of-life issues. Additionally, data collection has been completed and a write-up is in progress from a focus group study looking at Advance Care Planning (ACP) understanding and actions conducted with LGBTQ older adults living in six non-metropolitan British Columbia communities.• Recruitment is currently underway for a focus group study of ACP understanding and a cultural relevance critique of planning tools by bilingual Ethnic South Asian Older Adults mirroring the Bilingual Ethnic Chinese sub-study previously conducted.

“When you gave me the orientation to the Serious Illness Care Program, I thought to myself (and may have said it out loud) "I do this already"....and have always used the

specific language of "I worry...", "I wonder" etc.....I always gather this information. What I didn’t anticipate was the value of discretely using space and time to have this conversation. Instead of gathering all this data informally and over the course of the

admission, by actually sitting down and explicitly talking about this with the patient/family, it sits VERY differently in their memory and creates a very deliberate

closeness between the provider and patient.

I have now on two occasions had patients or family stop me in the city (once at main campus when a patient's daughter was attending her son's graduation and saw me walking to a meeting in that hall....and the other a patient walking by me on the street). The first stopped me to ask about the how to prevent such CV outcomes in her son who she had just found a package

of cigarettes in his backpack - and a patient stopped me on the street said, ‘You asked me what gives me strength - and I remember that - look at how strong I am. So - thanks for your hard work and insightful research. And thanks for creating

those positive experiences for me and my patients and families.’ These are the things that bring citizens closer together - and tighten our bonds as citizens, which have substantial positive consequences beyond even the one-on-one patient care.”

Gratefully, a General Internal Medicine Physician at Foothills Hospital in Calgary.