Developing Rural Palliative Care: A Theory of Change

1. Developing Rural Palliative Care: A Theory of Change Mary Lou Kelley, MSW, PhD Allison Williams, PhD Edmonton May 20, 2010

2. The Theory of Change Rural Palliative Care Program Antecedent Community conditions

3. What is capacity development? • Capacity is the capability of individuals, groups, organizations or communities, to perform or produce something of value, related to their desired development or performance. • Capacity development is the evolutionary process of change and adaptation that occurs from inside as individuals, groups, organizations or communities act to accomplish their goals. (Chaskin 2001; European Centre for Development Policy Management 2003; Kaplan 1999)

4. Principles of Capacity Development • Development is essentially about building on existing capacities within people, and their relationships • Development is an embedded process; it cannot be imposed or predicted • The focus is on change, and not performance • Development has no end

5. Change is incremental in phases, however development is dynamic & non-linear • The change process takes time • Development process engages other people & social systems • Different levels and forms of capacity are interconnected in a systematic way (individuals, teams, organizations and communities) (Kaplan 1999; Lavergne & Saxby, 2001)

6. 7 interdependent, interacting concepts influence change (process/outcome variables) • Capabilities (individual & team) • Performance (individual & team) • Change & adaptation (core concept), includes time • Management (leadership) • Internal features & resources (team) • External intervention (resources) • External environment (community & beyond) (Adapted from Baser 2003; European Centre for Development Policy Management 2003)

7. 4. Growing the Program • Performance • Team capabilities • 3. Creating the Team • Internal features and resources of the team (teamwork) • Leadership • Catalyst Incident • 1. Antecedent Community Conditions • Individual capabilities • External environment

8. The Model:The Growing Tree

9. The Theory of Change Rural Palliative Care Program Antecedent Community conditions

10. Characteristics of the community & local health care practice that provide a foundation for developing palliative care Antecedent Community Conditions

11. Phase 1: Having antecedent conditions Sufficient local health infrastructure; having collaborative generalist practice; sharing a vision of change and a sense of local empowerment. • Keys to success are; working in a small community, working together, and being community focused.

12. Characteristics of rural health • Generalist practice • Interdisciplinary & team based work • Flexibility of roles and responsibilities • Enhanced scopes of practice e.g. nurse • Enhanced knowledge and skill base • Delegation of tasks to primary care providers • Cultural adjustments

13. I think this is one of the advantages of rural death, is that you don’t have access to all the high tech resources and specialists, on the other hand, I think there is more flexibility [yes] in the system [Mm hmm]. And we’ll just move them flexibly through through the system and they’re in the hospital, they’re on home care….and lets not have too many policies that are gonna be barriers [Mm hmmm] to doing the work on the front line

14. We built on what exists… We didn’t create a lot of new positions to do this…everybody was already there….we did it with what we had….we were proud of that. One key [is] to first use the local things, whatever they have: their local wisdom, their local this, and then add to it instead of introducing something that’s completely new.

15. I think one of the benefits of living in a small community is that people do know one another and if people have good working relationships everything runs smoothly. So, prior to having the palliative care team established, there was already a good working relationship with the hospital, the personal care home and the community. The palliative care team has just strengthened those bonds

16. Phase 2: Experiencing a catalyst for change A person or event disrupts the community’s status quo, e.g. a local champion, new policy or education • It acts upon the antecedent conditions—transforms the vision for change into action • The catalyst triggers collective action to improve care of dying people in the community

17. A catalyst for change occurs in the community, disrupting their current approach to care of dying people Catalyst

18. Examples of catalysts.. • Palliative care education • A “bad death” • A “local champion” • Project funding/development initiative • MOH Policy change-end of life care strategy • Action Research • Cannot be “imposed” from outside

19. So, anyway, to make a long story short, the lady died in hospital several months after we were all introduced to her and she died a miserable death, … we all felt like we really missed the boat with her. She had so many end of life issues that we couldn’t even begin to deal with. We didn’t know how to, we didn’t have the resources and we really felt like she dropped through the cracks and we just dumped her really. We felt awful about it and we didn’t ever want it to happen again!

20. Phase 3: Creating the local team Requires having dedicated providers and getting the right people involved. • Keys to success are; working together, dedication, and physicians’ support

21. Generalist providers join together to improve community care of the dying and develop “palliative care”. Creating the Team

22. Creating the team… • The people who started on the team were very committed to the whole idea of palliative care, recognized that we could improve the services that we were providing if we worked together. And I’m not suggesting that palliative care was not being provided because of course it was in the hospital, in the community. Just everybody was doing their own thing and nobody was coming together to discuss issues or to have each other for support … {Mm hmm}, [or] organize some educational inservicing.

23. Relationships & Communication • I think a really important …how well this group communicates amongst each other. Without these damn titles--doctor, nurse, social worker I think that … respect that exists amongst us… we’re all equal, we’re all members of the same team. I think that’s really important. People have no hesitation to pick up the phone and call each other and bounce ideas off each other because we know each other so well.

24. Phase 4: Growing the program Involves strengthening the team, engaging the community and sustaining palliative care. • Keys to success are remaining community -focused, educating community providers, teamwork, having local leadership and feeling pride in accomplishments.

25. The team continues to build, but now extends into the community to deliver palliative care. Growing the Program

26. I never feel that I am out there alone. I can pick up the phone; I can talk to our pharmacist who is really tremendous support for us all. If I’ve got medical problems, I can pick up the phone and talk to [others]. So, that back-up, the support that other people can give; so I don’t feel like I’ve got to know it all or do it all. I couldn’t.

27. Doing it with what we had • We try to do the best we can with our clients, with what we have. And I think that a great asset to us is because we have such good communication and a great team of people work with in the community, who are very interested in caring.

28. …We tried to be innovative and flexible. We sort of get our knuckles rapped for some of those innovative things. But I guess I strongly believe that unless you do those things, we’re never going to progress. So maybe we need to do things, get our knuckles rapped but then, you know, help other people to see the light

29. Strengthening the team • Developing members’ expertise • Sharing knowledge and skills • Creating linkages outside the community • Learning-by-doing (taking risks) • Developing members’ self-confidence

30. Engaging the community • Changing clinical practices • Developing/implementing tools for care (e.g. in home chart, ESAS, PPS) • Care planning • Family education & support • Educating and supporting community providers • Building community relationships to improve service delivery

31. Sustaining palliative care • Volunteering time • Getting palliative care staff and resources • Developing policy and procedures

32. Challenges: Growing the program • Insufficient resources • Organization and bureaucracy in the health care system • Lack of understanding/resistance to palliative care • Nature of the rural environment

33. Keys to success… • Being community-focused • Educating providers • Working together/teamwork • Leadership (local) • Feeling pride in accomplishments

34. Reference Kelley, M.L. (2007). Developing rural communities’ capacity for palliative care: A conceptual model. Journal of Palliative Care, 23(3), 143-153.