Advocacy

1. Building regional networks Advocacy Education Clinical care Building external linkages Building community relationships The Model Process of PC Development Antecedent community conditions

2. Developing Rural Palliative Care: A Conceptual Model Mary Lou Kelley, MSW, PhD SW EOLCN Meeting London, ON April 8, 2009

3. Agenda for today • Present the model that portrays developing palliative care in rural communities • Have participants discuss the accuracy of the model from their experience

4. Background • 1999 National Health Canada Study (MacLean & Kelley) • 2002 Reanalysis of the data for the development of a conceptual model based on the principles of capacity development • 2005 CIHR ICE grant (5 years) to validate the model and to use it in community development as a guideline for palliative care development

5. Capacity Development

6. What is capacity? 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)

7. 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

8. 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)

9. The Model:The Growing Tree

10. Developing palliative care in Communities: A four phase model Advocacy Education Clinical care Building external linkages Building community relationships Process of PC Development Antecedent community conditions

11. Phase One • Antecedent Conditions

12. Antecedent Community Conditions (nutrients in soil & seed) Community empowerment Collaborative generalist practice Vision for change Sufficient health services infrastructure

13. Collaborative, generalist nature of rural practice • Providers have multiple roles; know one another well • Integration of personal & work relationships • Individually dedicated and capable providers • Vision for change in “care of the dying” • Community has informal networks of care; volunteerism • Community has sufficient health services infrastructure (human and organizational)

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. People almost have to have experienced what it is like to be involved with the death of somebody in the family and how it doesn’t have to be like that. It doesn’t have to be a difficult, … it can be probably one of the best experiences of your life if you can help people come to grips with some things before that person dies or, or they die comfortably, or what, or whatever happens.

17. And the team will not only be nurses…I’ve suggested that other disciplines be involved, although because it’s a rural area there is a interdisciplinary approach

18. Because we are a small community, we hear everything through the grapevine. So, …we hear about the failures and not knowing early enough

19. Keys to success… • Working in a small community • Working together • Being community-focused (focus on the whole)

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

21. Phase two… • Catalyst

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

23. A catalyst is….. • a person or thing that disrupts, creates discomfort, and stimulates change within the health care community. • As a consequence, current ways of providing care are judged to be inadequate • It acts upon the antecedent conditions—transforms the vision for change into action • The catalyst triggers action to improve care of dying people in the community

24. Examples of catalysts.. • Palliative care education • A “bad death” • A “local champion” • Project funding • MOH Policy change • Cannot be “imposed” from outside

25. 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!

26. So he [local champion] was the one that actually was instrumental in pulling us all together initially and from there our team grew…

27. The catalyst… • Is a trigger for change • Provides the motivation and momentum for community providers to move to the next phase of the model “creating the team”

28. Phase three… • Creating the team

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

30. Major themes: • Having dedicated providers • Getting the right people involved

31. 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.

32. Dedication… • Home care nurses are not on-call, when we have a palliative care client in the community all the home care nurses make themselves on-call for that client at any time. They don’t get reimbursed for that; they just make it happen

33. 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.

34. I was the head nurse over sixty residents [LTC]…I was aware of the fact that maybe I wasn’t as cognizant of some of the medications that could be utilized for the best benefit of the residents…when I first started on the team it was basically for self-preservation

35. Keys to success… • Working together • strong relationships, communication, support • People have been very dedicated • Physician involvement

36. Phase four… • Growing the program

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

38. Major themes… • Strengthening the team • Engaging the community • Sustaining palliative care

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

40. 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

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

42. 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.

43. 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.

44. …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

45. 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

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

47. Being community-focused… • I mean you have to really be thinking rural perspective. You can’t just take a program from an urban area and plunk it into rural communities. It just won’t work if you do that. • People live in rural areas by choice and those people don’t do well in formalized programs, I don’t think of any sort. And so I think the key to anybody wanting to start a program in a rural area, keep it as simple as possible without all the rules and regulations and registration forms and so on.

48. 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

49. Development is formalizing the informal… • I think palliative care has always occurred in rural areas; it’s just formalizing [the process] a little bit, and getting the educational component from the hospice in Victoria, that example of what works. And not being afraid of jumping in and doing it. And getting the other team members on board as others have said, to manage the symptoms. But not being afraid, and just recognizing that its always occurred.

50. Advocacy The outcome within communities Education Clinical care Building external linkages Building community relationships Process of PC Development Antecedent community conditions