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Setting the Stage for Change – Play your Part!

WORKSHOP REPORT APRIL 2010 Workshop date: March 9, 2010 Workshop location: Westhaven Golf & Country

Club, London, Ontario Report prepared by: Sheila Cook InFacilitation

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ACKNOWLEDGEMENTS Workshop Advisory Group Janette Burton

Wendy Boyle Paul Cavanagh Sheila Cook

Jayne Graham Julie Johnston Circle or Square of Care Facilitator

Wendy Boyle, Palliative Pain and Symptom Management Consultant London Middlesex

Workshop Participants Sponsors, Supporters and Funders

Hamilton Niagara Haldimand Brant Hospice Palliative Care Network Provincial End-of-Life Care Network Provincial Palliative Pain and Symptom Management Consultation Services

Network Seniors Health Research Transfer Network South West LHIN Southwestern Ontario Palliative Pain and Symptom Management Consultation

Program The Change Foundation

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WHAT’S INSIDE? Section Where to find Page Workshop at a Glance Quick overview of objectives,

accomplishments and next steps How to use report Next Steps

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A. Workshop Objectives and Format

Objectives Guiding Principles Format of the day

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B. Hospice and Palliative Care Take Centre Stage

Welcome messages from Jayne Graham

South West End-of-Life Care Network – Paul Cavanagh

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C. Circle or Square of Care

Description of Role Play activity Themes that emerged Share Your Story themes

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D. Find your Mark Wicked questions Management of Change Model Themes that emerged

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E. Evaluation Pre-Evaluation Strengths and challenges Post-evaluation Commitments

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Appendices I. Workshop Agenda

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II. Circle or Square of Care – detailed observations by scene

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III. Management of Change Work Group Notes

22-45

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WORKSHOP AT A GLANCE On March 9, 2010 a passionate group of 75 hospice volunteers, health care providers, administrators and policy makers participated in an interactive workshop designed to provide opportunities to:

Learn more about what it means to provide continuity of hospice palliative care and the issues that challenge us and help us provide it.

Understand the needs of patients and families who are affected by life-limiting illness; the challenges they have navigating the systems of care; and what would help them navigate more easily.

Reflect on personal practice/work/volunteer contributions and discover ways to make decisions, communicate and act in ways that improve the care experience.

Try simple resiliency strategies to incorporate into daily life. Remarkable achievements The outcomes of this 6-hour facilitated session were remarkable. Workshop registrants came ready to participate and make a difference to services and care for people with life- limiting illnesses. Enhanced awareness and commitment Evaluation results showed that 90% of respondents strongly agreed or agreed that: They feel confident the group will follow through on ideas generated to improve care

experience. Their commitment to contribute to initiatives was strengthened. Their understanding of the challenges involved with coordinating and providing care to

people with life-limiting illness improved. Their understanding of the challenges caregivers face improved. Through a number of activities and discussions, participants:

Identified strengths to build on Advocacy Awareness of Gaps Coordination/Collaboration of Services through New Programs Education/Expertise/Knowledge of Staff and Volunteers Caring, compassionate, dedicated, motivated and passionate staff, physicians

and volunteers Access to resources.

Described areas for improvement Education and awareness of patients/families and care providers Communication Information sharing Service coordination and continuity of care Holistic care experience Client-centred care Challenges related to distance.

Homecare support and support for family

Support for Ethical dilemmas faced by care providers.

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Articulated a desired future characterized by 1. Decreased risk of medical errors 2. Less time searching for information 3. More patient goals met 4. Earlier discussions about disease process 5. Patients and families feel supported 6. Earlier initiation of palliative care services which improves pain and symptom

management 7. Patients and families are more informed participants in their health care 8. Caregivers have better sense of well-being 9. Less frustration, anger, confusion and fatigue 10. Fewer law suits 11. Patients and families feel more prepared 12. Smoother transitions 13. Care providers work more collaboratively.

Started to plan improvements for 12 challenges using a targeted management of change approach

1. How can we improve the coordination of services when the journey is often “a squiggle” rather than a circle of care?

2. How can we improve whole-person, family-centred care when healthcare and medicine are so specialized?

3. How can we better support informal caregivers when their circumstances are so different?

4. How can we improve communication between patients/families and the health care system when we speak different languages?

5. How can we better describe disease progression and prognosis – so families can be prepared – when people wish to remain hopeful?

6. How can we improve understanding of hospice palliative care when our society is all about youth and living?

7. How can we ensure all aspects of health care are offered (e.g. spiritual, financial, nursing) when a truly holistic approach may not be offered historically?

8. How can we better share information when there are so many transfers/handoffs?

9. How can we resource education about chronic disease and illness prevention when they are not the “sexy” topics?

10. How can we start planning early for care and intervention when we live in a “just-in-time” world?

11. How can we improve as multi-disciplinary teams when our resources are already stretched?

12. How can we involve patients/clients/residents more when they are under so much stress?

Workshop Communications A high-level summary of the workshop was emailed to all workshop invitees. Please see www.eolcare.ca for a copy of the 4-page bulletin.

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How to use this report Although the report is lengthy, it is divided into sections so you can easily access the information you’re looking for. This report was designed to be a comprehensive account of the workshop. The intention is for the wisdom, learnings and ideas to be wisely used. Please use it as a resource when you’re:

Looking for a spark of inspiration Trying to recall workshop discussions Working on an issue and need some fresh thinking Guiding change initiatives.

Personal practice and volunteer work

o Remember the personal commitments you made to change your perspectives, fine tune your communication skills, build your knowledge and/or manage your well-being. If you’re stuck refer to the change management model so you can tailor your change effort to the problem. Challenge yourself to do one thing better each day.

Team process improvements

o Take the lessons learned to make changes in how your team provides care and services. Apply the change management model and template for a quick start to improve team processes, communication, problem solving or interactions with other parts of the system of care.

Systems change

o If you’re in a leadership position, consider the ways you can use the rich information included in this report to guide strategic planning and implementation initiatives. If you’ve been frustrated with past improvement efforts return to the manage of change model – perhaps the actions were not aligned with the problem.

Network initiatives

o The Steering Committee will use this data to inform the June 2010 strategic planning session. In addition, the Service Delivery Committee and Editorial Board will carefully review the notes for recommendations that fit their mandates.

o If you’re planning a similar event, a more detailed Operations Report and Implementation Guide is also available from the South West End-of-Life Care Network.

Next steps The network’s website at www.eolcare.ca will post progress reports and how the workshop discussions continue to influence strategy and projects. All the ideas generated at the workshop will be considered as the South West End-of-Life Care Network continues to build a strategic plan. This process will include determining which of the suggestions from the workshop can be incorporated into existing work groups and which ones require a new way to tackle them. In the near future, those who said they were interested in continuing their contributions to initiatives will be contacted. Some basic project management tools to support the working groups will also be posted at www.eolcare.ca. In addition, the Network will provide support such as conference call lines and administrative support.

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SECTION A WORKSHOP FORMAT AND OBJECTIVES The workshop format was built on the foundation developed by Chris Sherwood, Palliative Care Consultant and Julie Darnay, Director of the Hamilton Niagara Haldimand Brant Hospice Palliative Care Network. Additional activities were added based on the feedback from a previous Setting the Stage for Change workshop and to inform the Southwest End-of-Life Network’s current strategy development process. Working collaboratively with Sheila Cook, InFacilitation - the consultant contracted to support this initiative – the Workshop Advisory Group established the following objectives:



Reflect on your personal practice/work/volunteer contributions and discover ways to make decisions, communicate and act in ways that improve the care experience.

Try simple resiliency strategies you can incorporate into your daily life. The agenda (Appendix II) was created to meet these objectives and put the following principles and models into action:

High level of interactivity to allow all workshop participants (volunteers, health care providers, administrators, service coordinators, etc.) to contribute their perspectives.

Appreciative Inquiry Model to create a desired future based on strengths and positive experiences.

Integrated management of change model to move from identifying challenges and gaps to making recommendations for improvement.

Simple resiliency strategies that can be incorporated into daily activities. Ahead of time, identify individuals to assume specific roles (e.g. observer, small group

facilitator) and provide them with just-in-time training. The theme “Play your Part” was incorporated into the agenda topics as a reminder about how change happens at differently levels including personal choices and interactions; within teams and organizations; when systems are overhauled; and by society as a whole. The morning was dedicated to: Networking and learning about programs and services available – displays set-up by 10

organizations. Responding to self-reflection questions. Participating in the Circle or Square of Care role-play. Sharing stories about personal experiences with end-of-life care. Identifying priority issues and opportunities for change.

In the afternoon, workshop participants: Self-selected a topic area for change that was of most interest to them. Worked in small groups on a management of change model to generate recommendations

for change.

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SECTION B HOSPICE AND PALLIATIVE CARE TAKE CENTRE STAGE Jayne Graham (Chair, London Middlesex End of Life Care Service Delivery Committee) welcomed everyone to the workshop.

“Today, we have over 90 people registered. That to me speaks volumes to the interest each of you have in helping to set the stage for change in hospice palliative care in our community. Now more than ever, innovative leadership at all levels is needed in our healthcare sector. The challenges facing us continue to grow more daunting as we strive to deliver improved and timely care on ever more constrained budgets. Without question, innovative and creative approaches are essential to ensuring these challenges are met. For a model of care to be truly integrated, there needs to be a unity of purpose that focuses on the needs of the patients, clients and their families and builds on effective partnerships between formal and informal care providers. One cannot be involved with hospice palliative care in any capacity without feeling that there is a bond between us. Whether you are helping with medical care, with emotional and spiritual care, or you are working behind the scenes to keep hospices a viable and integral part of our health care system, every person involved in this field is committed to the proper care of others. Your actions matter a great deal. There are many facets to this care, and each of us has our own role. This work is never easy. I think that all hospice palliative care workers struggle with special challenges, and we need each other for support and guidance. But I also think that there are immense rewards to be found through working in this field, and improving upon the work that we do. These rewards make us better people in ways that are difficult to put into words. What we learn from helping others to face death is not how much death is separate from life, but a part of it. We want you to leave here today feeling very confident that practical action will come out of today’s session and that you are motivated and you are committed to help move change forward.” Paul Cavanagh (Director, South West End-of-Life Care Network) shared examples of the work going on within the network. Educational Needs Assessment of providers of hospice palliative care in the South West LHIN. Over 190 people responded to the on-line survey. Aim is to create a Learning Strategy by May 1, 2010 to identify the most pressing needs and imaginative ways of addressing them while making education initiatives as relevant to practice as possible. Share the Care model was brought to this region with multi-year funding from the LHIN. Share the Care is a care giving model that shows how ordinary people can pool their talents, time and resources to assist a friend or loved one facing a health or medical crisis. Other initiatives include:

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Adapting the ePSW model to palliative care. This connects personal support workers with enhanced skills to community nurse through specially-programmed smart phones.

Creating culturally relevant teaching materials for First Nations people. Orienting medical students to hospice care. Paying the registration fee to the Provincial Hospice Palliative Care Conference for

recipients of the CCAC’s Heroes in the Home Award. Helping organizations align their processes for developing a plan of treatment for

CPR with Ontario Law. Activity 1: Get into character In this self-reflection exercise, attendees were invited to complete a worksheet that would help them transition into their role as an active workshop participant. This was the first of various resiliency strategies integrated into the day. They responded to the following questions: What is motivating you to participate in this workshop? What are you looking forward to? What questions or concerns do you have about today? How might you get in your own way (e.g. Feelings, past patterns, energy level, etc.) How can you make a meaningful contribution? What part will you play today?

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SECTION C CIRCLE OR SQUARE OF CARE This interactive role-playing activity consists of 12 scenes that depict a family’s journey through systems of care. To gain a better appreciation of their journey from a family’s perspective, small group members took on different family roles while others assume the role of a care provider who traveled from table to table trying their best to offer care and information. Wendy Boyle, Pain and Symptom Management Consultant, skillfully facilitated this section of the agenda. Activity 2: Track Group Discussions Observers were identified in advance and their task was to track observations and group discussions for all 12 scenes on a worksheet. See Appendix II. Activity 3: Top Three Opportunities for Improvement At the conclusion of the role-play, small groups were asked to identify their top three opportunities for change on the Now What Worksheet. Themes that Emerged

Awareness and Education o Health care providers o Patients and families

Communication: o Between care providers and patients/families o Between health care providers across the continuum of care o Between the layers of hospice palliative care o Within the public sector

Information sharing/transfer of information Continuity and Coordination of Care

o Within the systems of care o Involvement of patients and families

Holistic care experience o Taking care of the whole person and their family

AWARENESS & EDUCATION The Challenge

Why is it important?

What is hospice palliative care? Need to have clear understanding among health care providers

Impact on familyHow can we ensure the patient and family understand the diagnosis and prognosis so that they can accept the information and make wise decisions about advance care planning, care of other family members, etc.?

Because it is the foundation of operationalizing hospice palliative care.

How can we start planning early for care and intervention?

Education for patient and family for diagnosis, treatment and intervention

Prepare them for the journey How can we put more money and resources into education about chronic disease and illness prevention?

Because of baby boomers Financial resources are limited and will

be even more so How can we improve education? So families can be there own advocate

Everyone is on the same page

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COMMUNICATION The Challenge Why is it important? How can we improve communication? x4 Knowledge is power

For decision-making purposes Communication of different roles of health

care providers and resources available Increase trust

Create seamless care Everyone is on the dame page So families can be their own advocate

All family members are informed Health care providers need to be informed System does not work together

Need to designate a point of contact Consistent story Standardization of tools

How can we improve communication between family members; between health care providers; and between the layers of hospice palliative care?

Because it is the foundation of operationalizing hospice palliative care.

How can we improve communication between and among patients, family, members of health care team and the various facilities involved?

Ensure continuity of seamless care for patients/clients

Decrease duplication

How can we provide timely, clear, consistent, compassionate communication to the patient and family, and health care providers across the continuum?

Patients and families need information to make informed decisions.

Care providers know who is accountable to providing the information (how to maintain continuity)

How can we improve communication between patient/family and the health care system?

Ensure things happen in a timely manner. Empowers/enables/facilitates knowledge Less chance of things going wrong

How can we improve communication within the public sector to understand health care?

Education Accessibility

How can we better share information Need background information Need continuity

How can we improve communication and transfer of information?

Decrease confusion Decrease anxiety Improve quality of care for patient and

family Would empower everyone involved

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COORDINATION OF CARE The Challenge


How can we improve the coordination of patient’s care?

Continuity and quality of care Reduce duplication

How can we improve continuity of care? Better utilization of human resourcesHow can we coordinate care better? x2 Better assessment

Continuity of careHow can we improve early intervention, integration and continuity of care?

Proactive Better care along the way

How can we improve as a multidisciplinary team of health care providers?

Work as a team Who is in charge? Team needs to be better prepared

How can we improve care in the community?

Shift away from hospital care Decrease fragmentation

How can we work better together? All parts of the circle of care Need for touch base person

How can we develop teams to help support patients and families?

Improved communication Continuity Needs to be a functional team Team needs to be identified Teams need to meet face to face

How do we create a provincial DNR process?

It would be clear Consistency

HOLISTIC CARE The Challenge


How can we improve whole person, family-centred care?

Meet emotional needs Meet information needs

How can we better support the informal caregiver?

They’re exhausted Need help

How do we ensure that the patient’s family and significant people are included in the circle of care?

Caregiver stress Potential on-going caregivers –how to

obtain Financial burden Grief/stress counseling Living accommodation – needs may

need to be addressed Resource counseling

How can all aspects of care and resources be understood by and offered to patients and families?

Because medical, nursing, spiritual, holistic, financial, and community care all need to be considered and valued in our health care system.

Who can assist patients and families as a systems manager?

Continuity Leadership Communication Needs to be inter-sectoral Conversations need to start at

diagnosis How can we provide holistic care – Because it is the foundation of

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traditional, complimentary and spiritual care?

operationalizing hospice palliative care.

Activity 4: Share Your Story As a way to debrief this powerful and emotional experience, participants were invited to complete a Personal Now What Actions Worksheet and share their intentions with a partner. They were also invited to Share a Story about their experience about end-of-life care. These stories were typed and may be found on the South West End-of-Life Care Web site. xxxxxxx Themes that Emerged Theme Specific recommendations Lack of service coordination and continuity of care

Add Hospice care to CCAC computer system

Lack of home care support Lack of support for family

Emotional support (stress) Support for families with children when parent is ill

Importance of holistic care and client-centred care

Journaling as therapy Moving spouses to same LTC home

Personal dedication and commitment Need for improved education and communication of patient/client and family

Realistic and consistent re: prognosis, disease journey What to expect when someone is dying Financial matters related to LTC, treatments, etc. Role of families in advocating for care Advance care planning

Education of care providers Palliative care education for community providers

Ethical dilemmas faced by care providers

Support and education

Challenges related to distance

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SECTION D FIND YOUR MARK During the lunch break, the facilitator crafted a series of wicked questions based on the key issues identified in the Now What Activity. The wicked question brainstorming technique includes a desired goal and a barrier. Wicked Questions:

1. How can we improve the coordination of services when the journey is often “a squiggle” rather than a circle of care?

2. How can we improve whole-person, family-centred care when healthcare and medicine are

so specialized?

3. How can we better support informal caregivers when their circumstances are so different?

4. How can we improve communication between patients/families and the health care system when we speak different languages?

5. How can we better describe disease progression and prognosis – so families can be

prepared – when people wish to remain hopeful?

6. How can we improve understanding of hospice palliative care when our society is all about youth and living?

7. How can we ensure all aspects of health care are offered (e.g. spiritual, financial, nursing)

when a truly holistic approach may not be offered historically?

8. How can we better share information when there are so many transfers/handoffs?

9. How can we resource education about chronic disease and illness prevention when they are not the “sexy” topics?

10. How can we start planning early for care and intervention when we live in a “just-in-time”

world? 11. How can we improve as multi-disciplinary teams when our resources are already stretched? 12. How can we create a provincial DNR process when there are many silos?

13. How can we involve patients/clients/residents more when they are under so much stress? Workshop participants voted with their feet for priorities they wanted to work on for the afternoon.

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The workshop facilitator summarized a management of change approach based on the book by Dan and Chip Heath, Switch: How to change things when change is hard.

Script Notes - Description of Strategies Find the Bright Spots

o Go investigate what the “stars” do. Stars can be individuals, teams or organizations. What is it that makes them unique? There are often small and/or subtle things they do that make a big difference. How can you replicate their approach?

o Example: A Save the Children Worker noticed what separated malnourished children in Vietnam and healthy children were 3 simple things – their mothers actively fed them 4 small meals a day, added small shrimp and crabs found in rice paddies and sweet potato greens to the rice bowls – solutions that were available to everyone.

Script the Critical Moves

o Reduce ambiguity in your vision and improve clarity by selecting a few critical details and setting specific guidelines/rules.

o Limit the number of decisions and options. To create movement you must translate the vision into concrete goals. Give specific instructions. Then people can focus their energy on doing the right things and the right time.

o Example: To improve the health of a community, researchers launched a campaign to encourage drinking 1% milk instead of whole milk because it was the largest source of saturated fat in diets. By scripting one critical move they had more success than attempts to get people understand the more complex food pyramid (similar to Canada’s Food Guide) or specific details about percentages of fat.

Point to the Destination

o Describe a compelling destination – tap into emotions not just facts. Redirect energy toward getting to the destination rather than analyzing what’s wrong. Create inspiring postcard destinations that can be achieved in a few months. Celebrate milestones.

o Example: A first grade teacher started the year with most students not even knowing the alphabet. She motivated the kids with a vision they could relate to – by the end of this school year, you’ll be third graders. The vision and specific actions resulted in 90% of the scholars reading at a grade 3 level or higher by the end of one school year.

Find the Feeling

o Rather than the typical change sequence of analyze – think – change try see – feel – change.

o Sometimes change is not about understanding, it is about feeling – feeling in charge, feeling confident. Open minds, creativity and hope are required for many big changes. When people are interested they will learn better and be willing to try new things. Positive emotions such as optimism and excitement are powerful motivators.

o Example: By instilling a sense of pride in citizens, a college student with little funding and no authority saved a national bird after scientists had written it off as doomed to extinction.

Shrink the Change

o Big changes happen from a series of small changes. Small changes inspire hope that change is possible. Break big change into smaller pieces. Focus on the next tangible action.

o Example: Alcoholic Anonymous motto is “one day at a time”.

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Grow People o Our brains and our abilities are like muscles. They can be strengthened with practice. Give

people time to practice. Help people feel “big” compared to the challenge by fostering a sense of identity. Embrace a growth mindset.

o Example: Leaders coach teams to learn from mistakes; to expect initial success and then a time of murkiness during the learning phase before the practice pays off.

Tweak the Environment

o Make it easy to develop new habits. Many aspects of our daily live are shaped by the environment – traffic lights; bank machines that dispense money after you take your card out of the machine to reduce the chances of you forgetting it; and stores with milk coolers in the far back corner so you have to walk past lots of other groceries on your way to pick up an essential item.

o Example: Dieters who don’t keep snacks at home and use smaller plates eat less.

Activity 5: Planning for Change Small group facilitators guided action groups through a planning template. These completed, unedited templates are in Appendix III.

Themes that Emerged Communication Need for clear, honest, compassionate communication about

diagnosis, prognosis and services available. Consistent messages. Communication written in simple language. Written communication available in different languages. Communication materials available in locations where people go

(e.g. libraries) Education For care providers about how to share bad news, ask questions,

check for understanding. For patients and families about how to prepare for appointments,

ask questions, learn about services available, etc. Case study methodology.

Care

Anticipate and plan for needs in advance. Involve patients/clients and families more in care experience. Help to navigate the systems of care and translate. Importance of holistic care.

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Section E Evaluation: Pre-Workshop Evaluation

Which roles do you currently play?

Participants # % Care provider in hospital setting 2 3% Care provider in community setting 17 30% Volunteer 12 21% Policy maker 1 2% Manager/Administrator 16 28% Active Network Member 0 0% Other - Observer, RN, CNS, Share Care Coordinator, 9 16% Program Coordinator and Family Counselor * Some people have more then one role

1. I am confident that we can generate ideas today that will improve the care experience and meet the needs of people living with progressive life-limiting illness and their families.

Participant Responses

# %Strongly Disagree 0 0%Disagree 0 0%Neutral 3 6%Agree 28 58%Strongly Agree 16 33% Did not respond 1 2%

2. I understand the challenges that exist when it comes to coordinating and providing care to

people living with progressive life-limiting illness and their families.



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3. I understand the challenges caregivers face when it comes to caring for people living with

progressive life-limiting illness and their families.



4. Name 3 of the biggest challenges we have when it comes to caring for people with progressive life-limiting illness and their families.

Communication Life changes/challenges Between professionals and families Teamwork Easing transition for people Maintaining hope and a sense of well-being Caregiver information overload Language/cultural barriers Confusing medical system Lack of commitment to HPC from senior leadership Defining life-limiting illness Supporting patient wishes

Coordination of Care Care providers available when needed Providing 24 hr. care Assisting families who are working full time Assisting with people who are living alone Timely referrals in EOL journey Cooperation/coordination between care partners Information sharing between care partners Currently poor coordination of palliative care and nursing services Night vigils Fragmentation of medical care Long wait-times No clear navigation path for client/family Symptom management Coordinating timeliness of interventions

Education/Expertise/Knowledge Accessing the right information Access to appropriate education/training of palliative care for staff/volunteers Development of leadership guidelines Hospice awareness

- Demographics for an aging population

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Currently gaps in transferring knowledge Medicine focuses on the living, it needs to become specialized

Finances More government money More funding Too many financial restraints Lack of financial support for people wishing to remain at home Lack of funding for clients/families

People/Support Not enough volunteers Access to appropriate support for staff/volunteers Burnout/respite for caregivers Lack of support for clients and their families who wish to remain in the home Accessing physicians for in-home care

Resources Insufficient resources to support families Lack of residential hospices Knowing/accessing what’s resources are available Limited services in the community Accessing equipment, supplies and supports Lack of human resources – for example; PSW’s Limited resources

5. Name 3 strengths or things we have going for us when it comes to caring for people living with progressive life-limiting illness and their families. Communication Acknowledging gaps DNR confirmation form Advocacy

Coordination/Collaboration New programs to coordinate resources Good collaboration between CCAC and Hospice Coordinator

Education/Expertise/Knowledge Volunteers – well trained, lots of educations Knowledgeable/experienced staff System knowledge On-going education Increased education/awareness

People/Support Palliative care physicians readily available Caring, compassionate, passionate staff/volunteers Willingness to come together to make positive changes Committed/dedicated/motivated to provide quality care Team approach Nurses/PSW’s/HSW’s supportive

Resources

Access to hospital by living in a large centre

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Post -Workshop Evaluation

We would like your feedback on this workshop session. Please rate the following:

Excellent Good Fair Poor # % # % # % # %Circle or Square of Care Activity 38 81% 9 19% 0 0% 0 0%

Personal Reflection 26 57% 19 41% 1 2% 0 0%Handouts and Materials 24 50% 21 44% 3 6% 0 0%Small Group Activities 32 68% 15 32% 0 0% 0 0%Overall Structure 32 70% 14 30% 0 0% 0 0%

Overall Workshop Usefulness 32 68% 15 32% 0 0% 0 0%Extent of New Learning/Awareness 26 55% 18 38% 3 6% 0 0%Productive Outcomes/Next Steps 19 42% 23 51% 3 7% 0 0%Timeframe or Length of Session 27 57% 17 36% 3 6% 0 0%

Other Comments or Suggestions: Very quick day Clarify Felt a bit rushed/more time Very well done! More time to network Name tags should include where people are from/job title Difficult to hear Good format Skillfully led Impressed with “Next Steps” portion Great job! Enjoyed the day Kept on track. No wasted time Well organized. Great venue and food! Fantastic day! Thank you Would like copy of purple sheet

1. I am confident that we will follow through on the ideas generated today to improve the care experience and meet the needs of people living with progressive life-limiting illness and their families.



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As a result of participating in this workshop:

2. My understanding of the challenges that exist when it comes to coordinating and providing care to people living with progressive life-limiting illness and their families increased.



3. My understanding of the challenges caregivers face when it comes to caring for people living with progressive life-limiting illness and their families increased.



4. My commitment to contributing to initiatives to improve the care experience was strengthened.



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What is one thing you’ll do differently as a result of participating in this workshop? Communication Emphasize/pay more attention to communication regardless of barriers from

others/situation/lack of understanding Communication between all care providers Talk about DNR’s More involvement with family to help establish client needs Share ESA’s/PPS with families Call family physicians more often

Coordinate/Collaboration

Get more involved Follow through with technique to improve

Education/Expertise/Knowledge Sense of journey of care – not episode care

Educate families with what’s available for end of life care

People/Support Need for “quality of experience” for care providers and client Keep advocating and believing Stay involved Accept where clients are in progressive illness Keep focusing on solutions! Capitalize on opportunities

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APPENDIX II WORKSHOP AGENDA

Setting the Stage for Change Workshop: Play your Part! March 9, 2010 Today you’ll experience opportunities to:



Reflect on your personal practice/work/volunteer contributions and discover ways to make decisions, communicate and act in ways that improve the care experience.

Try simple resiliency strategies you can incorporate into your daily life. Agenda Time Activity 0830 - 0900

Registration Backstage Gathering – rub elbows with your peers and visit information displays Complete Pre-evaluation Find your table

0900 - 0930

Hospice and Palliative Care Takes Centre Stage Where this production is going – Paul Cavanagh & Jayne Graham Get into character – Sheila Cook, Workshop Facilitator

0930 - 1030

Circle or Square of Care – Wendy Boyle

1030 - 1050

Intermission

1050 - 1215

Circle or Square of Care – role play activity

1215 - 1230

Most powerful lessons Write your story

1230 - 1315

Let’s do Lunch

1315 - 1330

Find your mark – Action Groups

1330 - 1430

Momentum Builder Planning

1430 - 1445

Speed Sharing

1445 – 1500

Exit Stage Left – Paul Cavanagh Wrap-up Review – Evaluation Follow-up Strategy

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Appendix II Circle or Square of Care Observations Circle or Square of Care Activity Scene # 1 What did you notice? Now What?Prompt questions:

In this scene what stood out for you? What kind of feelings did you experience? What did not go well? Were there any surprises?

Prompt questions: What could be done differently to improve the

situation? What could be stopped?

Betty calls for an ambulance for Joe. (Betty doesn’t drive.) They take him to a teaching hospital instead of a local hospital.

Busy ER. The next of kin is Betty. This is unwise as Betty has

Alzheimers. Joe calls daughter, Amanda, and asks for help. Amanda

makes the decisions. Amanda gets agitated and anxious.

In triage, Joe answers his own questions and is not taken seriously or placed on high priority. He is left on a stretcher in the hallway for a long time before being seen. Is his family with him?

No plan for end of life care. There is a lot of activity without explanation. They are given different information then they anticipate.

There could be better communication between family members and between family members and hospital staff. For example, What do they want for EOL care? Decisions should be made by Joe, with Amanda’s help/support.

Nurse at triage needs to do a full assessment. To help stop anxiety further explanation should

be given. People shouldn’t fuss so much. Maybe Joe should have been taken to a local

hospital. The family could have been more assertive in

stating their wishes. Call 911 instead. Amanda could have followed

with Betty. The family could have a plan for ER/emergency

circumstances. Call the family doctor.

Frustrated, scared, worried, anxious, confused, angry

Joe wanted to go to a local hospital. Joe is worried about how Amanda will cope with this

large role that has been placed on her. Family squabbles. No supports in place. Decision making is poor. Denial. Does Joe understand what is happening? He is worried that he is going to die.

Going to a teaching hospital instead of the local hospital. Waiting in the hallway. Being kept waiting for so long. No privacy Medical staff jumped into action when he took a turn. Have they ever discussed EOL goals of care? What would happen if Joe was left alone without

Amanda?

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Circle or Square of Care Activity Scene # 2 What did you notice? Now What? Prompt questions:




Son seeking information – Betty is unclear with details.

Reassurance. Helplessness that “away” family member feels. (Why didn’t you call me when this happened?)

Weren’t given information in a timely fashion. No updates. After 7 days there should have been a better

sense of what was going on. The patient care is disorganized and there is a lack

of continuity.

Improved communication to family re: Joe’s health status, investigations underway.

One person on health team as communicator. Inclusion of son in conversation as POA. Support of home care when discharged home. CCAC discharge nurse to be called.

Amanda is feeling overwhelmed and stressed. She’s worried about Joe and Betty.

Tom is sad about the situation. Concerned about the welfare of Betty.

Betty – “Nobody was telling us anything” “left out in the cold”. They keep switching doctors.

Sarah is missing her mom. Helplessness – What to ask? Joe is scared and feels no one is talking to him.

He’s also worried about his wife.

Confident information provided. Extra care for Betty. An advocate is needed. No information on services or liaison. The family needs a social worker or discharge

planner. Listen to families needs. Define congestive heart failure. When visiting hours are.

Family meeting should have happened, including

Tom. Need family history. Granddaughter not being told what is going on. Betty needs extra care. There is no emotional support for or within the

family. They don’t know who’s in charge.

27





Impromptu family conference. Amanda shouldering the responsibility. Amanda being left out. PSW left explaining role. Why? Joe is feeling his needs are not being met. He is

down playing the situation. Everything being repeated by all care providers but

not real concerns - DNR, future of family. Tom thinks everything is ok because he’s not

being called. No nursing. NSG?

Family conference sooner. What are their needs? Case manager needs connection sooner. Care providers need to work as a team. One clear leader to coordinate care. Joe and family require information about his

condition and prognosis in order to plan. Schedule from homecare. PSW should not tell family they are lucky to get

what they are getting. Family want supervisor not PSW deciding the schedule.

Need to discuss finances. The family needs to know their options.

Need assessment from OT.

Amanda frustrated and stressed needs the care to be shared.

Joe does not want to make changes. He does not have a chance to express fears. He’s feeling inadequate and is in denial saying he’s ok.

People fear telling him what is going on. Frustration for children. Frustration and anger. No sense of control - from everyone Betty is confused and scared. The service provider is the enemy.

Clarification of roles. Develop care plan with family involvement. Family doctor needs to be updated. Track appointments. Joe needs counseling and his wishes need to be

met. Visiting nurse should have identified patient/family

needs.

Confusions about who providers are and their roles.

Betty is resisting in home service. Lots of changes for family. They don’t understand

what is going on and how the situation is being coordinated.

There’s a lack of understanding about CCAC care plan and expectations.

Still don’t know what is wrong with Joe. What are the next steps? PSW feels uncomfortable wondering who is

assessing this situation. Joe – People coming and going –he can’t keep

track Betty – Thinks Joe is not telling them the difficulties

he is having so people think he is better than he is.

28





No continuity of care. Amanda is crying! She is burnt out! No discharge plan. No dignity – restraining. Betty can’t drive, not realistic D/C. No social worker. Lack of respect for patient/family. Betty moving in with Amanda while Joe is in the

hospital. Nurse is the coordinator. Does not know about

Betty’s limitations.

A discharge plan. Oxygen for Joe? Family meeting with CCAC. Portable care plan. Clear plan. Need a coordinator. Social worker in place to alleviate stress. Do they know about Betty’s dementia? She

shouldn’t have been called to pick him up. Family needs access to resources. Volunteer from Alzheimers Society to spend time

with Betty. Group frustration. Anger Betty feeling helpless. Amanda resenting Tom. Joe agitated, anxious and confused. Tom frustrated. Feeling left out.

Need to connect Amanda and her kids to support. MOW. No advocate in hospital for family. One identified

leader. Need improved symptom management. Continuity of care providers.

Care providers have positive information but aren’t

sharing it with each other. No bed for Joe. No family meeting. No CCAC involvement.

36 hrs. in emergency. The call to go pick Joe up is a surprise. Restraining Joe. Abrupt D/C.

29





No conversation with Joe. Know one asked him where he wanted to live or Betty. He’s still in denial.

Oxygen – Why can’t he get it? Different guidelines for palliative care. Joe and Betty move in with Amanda and kids. No support in home, no goal of care, no team

approach. Joe is limited by physical problems. Amanda’s x-husband is a jerk!

Social worker and caring hospice worker needed. Diagnosis? Assessment for Joe? Use tools by service

provider – ESAS. Visiting nurse can find out who is supporting family

– Alzheimers Society? Information to school principal to explain the family

situation. Need family conference to discuss nursing homes,

private duty nurse. Call Tom to come help! The finances are a burden. Need CCAC assessment

Grandkids are scared and stressed. Need support. Amanda needs to know how to talk to them about death.

Tension at home with the changes. No assessment of depression for Joe Betty is worried Amanda will put her and Joe in a

home. Tom feels left out.

Need resources. Anticipatory grief for family is not being dealt with. Amanda may qualify for compassionate care

benefits. Advanced care planning is needed Betty’s dementia is probably worsening – need

respite care. OT referral. Involve Sarah and Joe in jigsaw puzzle. Need another T.V. Would Joe like other activities besides T.V.

watching? What is best for the entire family? What are the options for the family at home? Were the options presented to them? What is the level of care Joe really needs? What are Joe’s normal activities? Single mom, how can she cope?

CMHA – regarding Joe’s depression. Help/support for Amanda.

SOB unaddressed. Do they still have CCAC/PSW support?

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Prompt questions: What could be done differently to improve

the situation? What could be stopped?

Joe has no idea of his prognosis. No DNR discussion. Advance Directives need to be addressed. Still no POA for personal care. Lack of privacy. Joe is on a ward and

sharing a room. More change and inconsistency.

Service provider –needs information of level of care –what this means for family.

What is Joe’s understanding of being in LTCH – he can be discharged.

DNR discussion with family. Expectations for treatment. LTCH closer to family. What about

hospice? Joe is lonely and anxious. He is angry

and depressed. Loss of control. Tom is feeling helpless. Amanda is exhausted.

Keep Betty and Joe together? Those are their wishes.

Someone needs to explain to family the progression of the disease and address fears.

Explain what palliative care is. LTC home is too far away. Betty can’t

visit that often. Need volunteer service to drive Betty to see Joe.

People are getting tired. The family needs to be included with Joe

in discussion of level of care. Has Joe been told he is going to die?

Discuss plans earlier. Joe needs privacy and dignity at end of

life care. Betty needs to be there. HC needs a lot more funding. Need doctor or social worker who

specializes in ACP. Put wishes and decisions in writing. They need a family advocate to get Joe

moved to a more appropriate room with better QOL environment.

Is he placed in the right room of LTC home?

HCP is surprised by family’s lack of understanding of Joe’s prognosis.

Lack of choice of LTC home.

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Service provider – no discussion re: goals of care Very limited communication with the family again! Joe is in denial. Betty calls Tom. Different family dynamics. Service provider confusion about the desires and

wishes of family. Another exacerbation for Joe – looks progressively

more ill. No continuity of care. Another change in caregivers. No one is talking about prognosis.

Tom needs to come home! Doctor should not ask questions of Joe without the

family being present. Joe should go to the original hospital. LTC can call hospital ahead to give Joe’s

information prior to him arriving at ER. Review DNR wishes. Joe needed a comprehensive geriatric

assessment. Get meds sorted out. Medical reports should be shared between

hospital/doctors.

Tom is very frustrated. Doesn’t think Amanda is

doing a good job. Tom is not actively participating. Joe is scared and angry.

Information required in all scenes so that Joe and his family can make informed decisions.

Look at advanced directives. Symptom management discussions. The family needs direction from the health care

system. The family didn’t know what the Advance

Directives meant. LTC bed on hold.

Meds at LTC adjusted. This is the third hospital and still no information. It was a surprise which hospital Joe would go to. Meds for pain and anxiety have been decreased

(without knowledge?) New medical team.

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Things are getting worse. EOL care is not discussed with family. No DNR discussion. Tom doesn’t know what to do – trying to time his

visit. Care providers always seem to talk with Joe when

family members are not around. Family is finally told Joe’s prognosis.

Family need to have a conference call with Tom. Physician/social worker could talk with Tom. Ask Joe who else should be involved in the DNR

conversation. Tom needs to be there. Talk about the terminal aspects of these chronic

diseases upon diagnosis including trajectory of disease etc.

Maintain hope and optimism earlier but also provide realistic expectations.

Stress for everyone, anger and confusion. Tom is angry and feeling guilty. He would have

come out sooner if he had known the real situation.

Was there a palliative care service that could have been involved sooner?

There is a need for a consistent person to assist family along their journey.

Plan meaningful activities focus on ensuring “hope” is still in Joe’s life.

Is there any spiritual care. Again, no one person overseeing and supporting

Joe/family.

Need a family meeting including Tom. Has anyone mentioned “dying” to Joe? Have they coerced Joe into signing DNR?

Why is the family not asking questions? Shock of DNR conversation – not respectful. The doctor didn’t realize Joe/family didn’t know the

prognosis. Joe is dying.

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Social worker needed to be involved sooner. Great to have a coordinator of care/services. Everyone is finally involved and can now move

forward. Grandchildren are still being neglected and

protected. Tom finally arrives. There is tension, animosity

and fear.

A support group for family members. An advocate for the family. Social worker involved from the beginning. What are the criteria for hospice care? Need of a leader. Need a team to support the family throughout

process. Address EOL care. Increased family conferences with health care

providers throughout.

Betty is confused and scared. There are too many changes.

Frustration with system. Joe felt put on the spot having not been involved in

the conversations before. Tom is not aware of what has and is going on. There is anger at Tom for showing up with

accusations/assumptions. Betty wants to know Tom will look after her. Amanda is worried about everybody. She’s not

being truthful to her kids. Joe feels like a burden.

More involvement and sharing with the grandchildren and Tom from the beginning.

Joe needs to make decision about EOL care. Betty needs assessment and appropriate care. More family discussions. Early and effective intervention. Consideration for Joe and Betty’s wishes. Promote Share the Care model.

Sarah is out of the loop. How did all this happen and so fast? Poorly organized process. What palliative care services are available? Cost? Amanda not in agreement with Joe’s decision for

DNR.

Joe was declined hospice care.

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Appendix III Topic: Awareness and Education 1. Wicked Question:

How can we increase understanding of hospice palliative care when our society is all about youth and living?

Medical field views “palliative care” as there is nothing more we can do. Death is a

failure. High doses of drugs in palliative care “don’t matter in palliative care” We need to add “life to the days – not days to the life” Lack of education about palliative care Palliative care is a philosophy for everyone to work by.

2. How will we know a change is an improvement?

Target specific groups? Who is that? Definition of palliative care is not agreed upon – how do we develop consensus? CHPCA is not strong enough to infiltrate into the referral sources.

3. How could we start to make a positive shift?

√ There is not a common vision – Point to the destination 4. What possible ideas could we try to make the shift? List them all.

Survey families who have been through a situation (sharing stories) National awareness campaign (CBC Radio) Increase communication, information and education Western culture is a death-denying society Exposure about hospice palliative care Sustain the vision Pediatric palliative care needs to be seen as significant

5. Select one or two with the most potential for success

Baby boomers getting older and will demand comprehensive care – control and involvement

How do we change what we do to suite the needs of this demographic? Media involvement National and local sponsors

6. One step take by end of March?

Regional End-of-Life Committee to develop a policy on public awareness Social networking - You Tube – Facebook – Twitter

7. One step take by end of June?

Western or Fanshawe marketing department Alumni classes – information session

8. Names Please contact [email protected] for names.

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Appendix III Topic: Communication 1. Wicked Question: How can we improve communication between patients/families and the health care system when we speak different languages?

Goal:

Timely information sharing Inclusive – all disciplines/patients/clients/residents/families Transparency Portable - key pieces of information that goes with the patient

Barriers – hardcopy, no standardization of forms, no one identified as most responsible person, no navigator, family members and patient don’t remember all the roles of those involved, lack of documentation by staff

2. How will we know a change is an improvement?

Reduce time searching for information Decrease risk of medical errors Conduct a patient and care provider survey


√ Find the bright spots Electronic patient record Ann P? – 1 page info for GP

√ Point to the destination √ Find the feeling

People are not motivated √ Shrink the change √ Tweak the environment

4. What possible ideas could we try to make the shift? Bright spots – EPR geriatric team Bright spots – SCRT at CCAC – 1 pager for GPs Shrink the change – A navigator (a human face that is constant) What do we have that we can link? Choose 1 person in the family (circle of care) to be responsible for communication Stop the line concept – assign the communication What do the players need?


36

Appendix III Topics: Communication and Education 1. Wicked Question:

How can we start planning early for care and intervention when we live in a “just-in-time” world?

Proactive – pre-disease process – normalize families discussing before a problem Use 60% PPS as not a score but an action

2. How will we know a change is an improvement? More options – dynamic More goals met


√ Script the critical moves √ Grow People

4. What possible ideas could we try to make the shift? Public service ads, TV, pamphlets – topics to direct conversations Nurses need modeling to present/facilitate families

5. Select one or two with the most potential for success Public service ads, TV, pamphlets – topics to direct conversations

6. One step to take immediately? Find scripted conversations for family facilitation

7. One step to take by end of June? $ $ $ Technology to make changes live on

8. Names

Please contact [email protected] for names.

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Appendix III Topic: Care 1. Wicked Question: Desired goals Education Knowledge of other disciplines within the system Make holistic care a standard of care rather than a luxury

Barriers Silos Education and services exist within silos Agencies not changing same as demographics

2. How will we know a change is an improvement? When patients and families feel supported within the process


√ Find the bright spots √ Find the feeling

4. What possible ideas could we try to make the shift? Use available resources Establish like-oriented networks Periodic multi-disciplinary rounds within circle of care Make holistic care the standard of care

5. Select one or two ideas. Identify all circle of care participants and how bring them on board Identify client needs

6. One immediate next step Create a comprehensive reference within the circle of care

8. Names

Please contact [email protected] for names.

38

Appendix III Topic: Communications and Education 1. Wicked Question: How can we better support informal caregivers when their circumstances are so different? Understand informal caregivers past experiences Where they are at, their circumstances, what they are capable of, how much time they can

commit 2. How will we know a change is an improvement? Caregivers will be more relaxed in their role, relieved there is support available, lighter mood

in the environment, better sense of well-being. ESAS tool


√ Find the bright spots √ Find the feeling √ Shrink the change √ Grow people √ Tweak the environment

4. Possible ideas to try to make the shift Suggestions, recommendations how to make things easier Accept help when offered – don’t be afraid to ask for what you need Open lines of communication

5. Select one or two ideas Have a communication book that anyone can write in Calendar for appointments Suggest share the care

6. Immediate next steps Improve communication skills

o Book to write in o Set-up time to talk to out of towners

8. No names given

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Appendix III Topic: Care and Communications 1. Wicked Question: How can we improve whole-person, family-centred care when healthcare and medicine are so specialized?

What is whole person care? Common definition. Appreciate value. Different interpretation (ie. communication exchange) Set-up supports to be there at the time of news delivery – preplanning/organizing Physical, psychological, social, spiritual, cultural and bureaucratic – commitment to details MD/nurse/NP/dietician – flow through this

2. How will we know a change is an improvement? Family feedback Decreased frustration, anger, fatigue, etc. People will know who to talk to about what


√ Script the critical moves √ Point to the destination √ Find the feeling √ Shrink the change√ Grow people *

4. What possible ideas could we try to make the shift? Ask the hard questions Be prepared with a list of questions / for communications Identify the next steps Skill development on how to implement this Family MD as part of the whole process – most responsible provider (not necessarily MD) Develop a systems navigator Bureaucratic assessment Assessment in all domains physical/mental/psychological/social Open access – MD does not pre-book appointments (4-6 months in advance). Physicals are

pre-booked. People who really need to be seen get seen. 5. Select 1 or 2 ideas Add the bureaucratic domain


40

Appendix III Topic: Communication 1. Wicked Question: How can we involve patients/clients/residents more when they are under so much stress?

Clarity – exhaustion - situation Volunteers sooner (earlier in care process) – decrease family stress Flexibility about when to talk to them (on their schedule rather than 9-5) Involve in decision making process as much as possible Provide information in print form – info in various ways to meet various learning needs Begin with family assessment of needs and expectations – care planning, anticipate points

of crisis and concern Identify 1 key family member to relay info (for any changes or regularly i.e. after MD visits) Non-traditional forms of communication (ie. emails) Keep expectations of caregivers reasonable Care for caregivers including education, strategies and psychosocial

2. How will we know a change is an improvement? Patient has a smoother transition along the journey People are better able to cope Patient more calm Reduction in crisis Decreased hospital and ER visits Open communication (kit available)


√ Script the critical moves – stuck in old patterns 4. What possible ideas could we try to make the shift? 5. Select one or two ideas Family assessment of family needs and expectations Develop an assessment tool for families that helps us understand needs and situation, direct

relationship to patient; direct supports where needed. Having information in print, info in various ways to meet different needs

6. One immediate step Do a lit search. Someone to do it!

7. By end of June Form a sub-group to review and make recommendations


41

Appendix III Topic: Communication 1. Wicked Question: How can we better describe disease progression and prognosis, so families and patients/clients can be prepared, when people wish to remain hopeful?

Info in lay terms, be honest in a gentle way. Knowing who should be involved in the discussion How much information is too much? Need to balance respect and wishes. Info not consistent between organizations – need interpreter Doctors/specialists reluctant to bring in palliative care

2. How will we know a change is an improvement? When family is more accepting of news Earlier intervention of palliative care services which allows for pain/symptom

management to be used earlier in the community


√ Find the bright spots (? Pediatrics does this well) 4. What possible ideas could we try to make the shift? Take time to bring families together with team; sharing information More global education as to what is offered in our community (public health care provider) Not about dying – it is about living PC organizations more consistent in our messaging Look at consistency across LHINs – continuity of care

5. Select one or two ideas EofL Network – start to more consistently message as to what is HPC and Services

available in each community and what goals are Deliver message in one package regardless of organization presenting

6. One immediate step Bring strategy back to local end of life committees for discussion

7. By end of June Train-the-trainer share the knowledge


42

Appendix III Topic: Communication 1. Wicked Question: How can we improve communication between patients/families and the health care system when we speak different languages?

Easier to bring vocab to level of patient and family Identify what level they are at Discuss as HCP what our priorities are for information sharing – serve in portions Ensure they’ve heard about what you intended - Ask people to state back what you have

said to ensure they heard. Find out each others’ “agendas” to know where they are Layman’s terms Ensure they understand – our language and layers of issues (EDITH in place after a

specific event – how did they get there?) Training on delivering bad news

o Compassionate o Ask what they want to know o Possible scenarios

2. How will we know a change is an improvement? Client/families will validate/client will explain to caregiver/next caregiver/ next caregiver Clear plans of care Everyone on the same page Won’t have diagnosis without prognosis like “Joe” Plans will be made


√ Find the feeling√ Grow people

4. What possible ideas could we try to make the shift? Educate the public – give a sheet – how to tell laypeople about _____ DNR, diagnosis,

prognosis in their terms Bank of phrases Give models and scripts

1. Case-based scenarios 2. Be aware it is a problem after they leave the room 3. Get at the feelings – appreciate how not having information affects people 4. Getting clinicians to realize how their own lives can be helped by clarifying issues

Educate the public – how to be better informed and how to talk to HCP 1. Write questions down 2. Bring a friend 3. Give pamphlets 4. How to get risks and benefits 5. HCP are protecting their time and passing on to others who also have less time 6. Give all options 7. What about other languages 8. Cultural understanding 9. Need to ID one person to know the whole story – not starting over again every time 10. Get outlines for diagnosis and prognosis – what to expect, what services are out

there

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11. What do we all do? Getting the HCP to know what each of us do so they can inform families. Awareness for HCP – leads to awareness for public.

5. Select one or two ideas Education for HCP :

1. how what you say/don’t say affects people 2. how to say it/when to say it – make sure they’ve heard and can repeat back

Education for patients/families 1. how to talk/give and get information 2. where to get information

6. One immediate step Editorial Committee – Healthline Public Forums – how to get informed Library – often visit with dx – info there on how to manage their journey What about different cultures/languages? Families/translators Get people to leave a card/information – how do we get in touch with you and why would I –

common communication binder/tool. We ask question but do we give them information on who we are and what we do and how we can help.

7. By end of June Get help to become aware of how this can affect people and identify need for change Provide sources of information


44

Topic: Care and Education 1. Wicked Question: How can we improve as multi-disciplinary teams when our resources are already stretched?

Multi-disciplinary teams – volunteers, doctors, nurses, social work, spiritual care, OT/PT, other therapists, psychology

Resources – financial, spiritual, time, human Need to identify those on the team with passion for EOL care to learn CHPC, etc, to

bring back to the team.

2. How will we know a change is an improvement? EOL will occur where patient’s wishes are – no just-in-time decisions. No admissions to

ICU when directive was not that focus. More people die at home. More families describe their loved ones death as a “good death” and be prepared. See dying as part of life.


√ Find the bright spots √ Script the critical moves √ Point to the destination √ Find the feeling √√√ Shrink the change√ Grow people

4. What possible ideas could we try to make the shift?

Grow leaders Discuss palliative care at early states of education – physicians, nurses, etc. Understand value of team members – role clarification Can use more volunteers - professionals who don’t have to own everything

5. Select 1 or 2 ideas Grow people with passion

o Advocate to all groups o Educate the public and professionals o Role play case study

6. One immediate next step Share the idea with our teams of origin – discuss EOL Bring case study to next EOL meeting – with all members at table

7. One step by June LEAP – need to identify docs with passion to attend similar workshop. Also need to

involve leadership to attend in both LIHN and other levels of government.

8. Names Janette Burton Sheen Ewen Paula Greco Sherry Walls

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Appendix III Topic: Care How can we improve the coordination of services when the journey is often more like a squiggle than a circle of care?

Flip chart notes are missing in action.

2. How will we know a change is an improvement? Fewer lawsuits Better patient satisfaction – happier making transitions, survey care providers about

how well they’re working together, specific transition points (family’s knowledge, experience, building resources into accountability agreements)


√ Find the bright spots √ Point to the destination√ Find the feeling Grow people

4. What possible ideas could we try to make the shift?

Understand what is in it for them? Being able to deliver on the promise Where’s the best place to coordinate the service Find out where it’s done well – Ottawa, Kingston – care more seemless

5. Select 1 or 2 ideas Find out where it’s done well, learn from our history – similar size cities, do it better Issue of centralizing resources Recognize that people need to be in hospital as as in the community Really understand what makes the difference

6. One immediate next step

Focus groups with people who know the bright spot examples really well.

8. Names Vicki Stewart Andrew Feron Lynda Parker Deb Woods Josh Shadd Jim Panchaud

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