ALBERTA HEALTH SERVICES

HELPING OPERATIONALIZE PALLIATIVE EXPERTISE

(H.O.P.E. PROJECT)

FINAL REPORT June 30, 2011

Submitted by:

Lynn Whitten, RN, BN, MSA, CHPCN(c) Evidence Based Palliative Care Lead

Senior's Health, Alberta Health Services

Jacquie Peden, RN, MN H.O.P.E. Project Manager

Leslie Gardner, Ph.D.

H.O.P.E. Project Evaluator

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Acknowledgements

There is a popular saying “It takes a village…” to convey the amount of joint and varied effort required to accomplish something. In the case of the H.O.P.E. Project, it has taken a whole “province”, for which we are profoundly grateful.

The authors would like to thank over 50 people who have been involved in the work. We begin by expressing gratitude to those individuals from the original provincial Advisory Group, and the later provincial Working Group who have supported and contributed to the H.O.P.E. Project over the four year span from April, 2007 to March 31, 2011. These people include: Vivien Lai, Alberta Health and Wellness; Lynn Whitten, (Replaced Colin Zieber); Jacquie Peden, Project Manager, H.O.P.E., Leslie Gardner, Project Evaluator, H.O.P.E., Pansy Angevine, Program Manager, Specialty Programs, Seniors Health, Central Zone; Vivian Collacutt, Community Cancer Support Services; Leslie Penny, North Zone; and Terry Woytkiw, North Zone.

In addition, there were a number of people who served on the original provincial Advisory Committee, some representing their health regions from April 1, 2007 to March 1, 2009. We appreciate and thank the people who laid the foundation for the project’s success, including: Donna Stelmachovich, Chair, H.O.P.E., Chinook Health; Colin Zieber, Vice Chair, H.O.P.E., Chinook Health; Wendy Musial, Recording Secretary, H.O.P.E., Chinook Health; Lynn Olenek, Alberta Health and Wellness; Ghislaine Boucher, Peace Country Health Region; Terry Drefs, Palliser Health Region; Sarah Fordham, First Nations & Inuit Health Branch, Health Canada; Dennie Hycha, Capital Health Region; Ruth Grant-Kalischuk, SEARCH Canada & University of Lethbridge; Roy Koshy, David Thompson Health Region; Larissa Lysons, East Central Health; and Darline Reid, Northern Lights Health Region.

Working Committees carried out the direction received from the Advisory Committee during the period April 1, 2007 to March 1, 2009. In addition to some individuals from the Advisory Committee, we are grateful for the contribution to H.O.P.E. provided by the Working Committee members, including: Glenda Armstrong, Alberta Cancer Board; Arlene McDonald, Capital Health; Dr. Doreen Oneschuk, Capital Health; Linda Thomas, East Central Health; Pat Selmser, Capital Health; Shari Young, Capital Health; Michael Aherne, Pallium; Christine Thompson, SEARCH; Charlene McBrien-Morrison, Advisor – Health Quality Council of Alberta; Tim Cook, Advisor – Health Quality Council of Alberta.

We thank those who gave their time and talents to the provincial Working Group, constituted early in 2010 when funding from the original project was granted by Alberta Health Services for the continuation of the H.O.P.E. work, from April 1, 2010 to March 31, 2011. These people included: Karen Gayman, Executive Director Palliative Care; Alberta Health Services; Colleen Zimmel, Executive Director, Seniors’ Health, Alberta Health Services; Corryine De Souza, Senior Executive Assistant, H.O.P.E.; Tammy Acker, Central Zone; Dr. Kim Adzich, Central Zone; Bert Enns (replaced by), Jana Ambrogiano, (replaced by)Janice Hagel, Calgary Zone; Liz Ross (replaced by), Gail Blanchard, Edmonton Zone; Mary Kneale., South Zone; Sandra Young (replaced by)Lisa Porret, Edmonton Zone; Leann Popson Esau (replaced by) Beth Quan, South

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Zone; Kerry Roberts, South Zone; Dr. Elvira Smutts (left and not replaced), South Zone; and Dr. Sharon Watanabe, Cross Cancer Institute.

Project Groups, including some people from the provincial Working Group, were formed to carry out the tasks involved in the implementation of the H.O.P.E. Project from April 1, 2010 to March 31, 2011. We extend great thanks to the Project Groups for their expertise, guidance and hard work. In addition to those from the Working Group, the Project Group members comprised: Erna Carter, Telehealth, Alberta Health Services; Pam Cummer, Central Zone; Michelle Farrauto, South Zone; Barb Fox, Calgary Zone; Marnie Gazankas, Cancer Care – Telehealth; Deb Gitzel, Palliative Care Resource Nurse, Palliative Care Team; Central Zone; Daena Lamoureux, Community Cancer Support Services; Alison Mckinna, Calgary Zone; Janice Hagel (replaced by ) Kathy Rasmussen, Calgary Zone; Linda Read Paul, Calgary Zone; Margot Sondermann, Calgary Zone; Marie Webb, Calgary Zone; Sandra Young, Edmonton Zone.

Finally, the authors wish to thank: the LEAP Workshop participants; the HCA education session participants; and the nurses who participated in training in Edmonton; for their participation in the evaluation of the Project, and for the learning about the impact of H.O.P.E. activities and best practices in palliative care that they shared.

Lynn Whitten, RN, BN, MSA, CHPCN(c) Evidence Based Palliative Care Lead Senior's Health, Alberta Health Services Jacquie Peden, RN, MN H.O.P.E. Project Manager Leslie Gardner, Ph.D. H.O.P.E. Project Evaluator

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Table of Contents page

Executive Summary 8 I. Background:

Review of the Literature 17 Policy Context 29

II. Project Description 31

Project Outcomes & Deliverables 32 The Three Project Pillars 34 Project Structure 38

III. Evaluation Framework 39

IV. Project Results by Pillar 40 Pillar One

1.1 Gap Analysis 40 1.2 Implementation Plan for Palliative Consultation 50

Pillar Two 2.1 Organizing and Implementation of LEAP Workshops 52 2.2 LEAP Workshop Sustainability Plan 69 2.2.1 LEAP Facilitator Training 70 2.2.2 Supporting, Mentoring and Evaluating Facilitators 72 2.2.3 Facilitators Guide 75 2.2.4 Local Planners’ Guide 75 2.3 Palliative Care Training of Northern Nurses 76 2.4 Delivery of Palliative Education via Telehealth/Videoconference 80 2.4.1 The Telementoring Education Series 80 2.4.2 Provincial Palliative Care Rounds via Telehealth 84 2.5 Evaluation of Health Care Aide Education Delivery Methods 85 Pillar Three 3.1 Pilot of a Provincial Client and Family Satisfaction Survey 114 3.2 Best Practices in Palliative Care 122 3.3 Practice Change Following LEAP Workshops 123

V. Summary of Results and Recommendations 145

VI. Bibliography 153

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Ⅶ. Appendices Background 1: Advisory Committee Membership, 2007 – 2009

Background 2: Working Group Membership, 2010 – 2011

Background 3: Working Committee Membership, 2007 – 2009

Background 4: Project Group Membership, 2010 – 2011

Evaluation 1: Program Logic Model (see attachments)

Appendix 1.2: Proposal for Service Model - Palliative Care Consultative Services

Appendix 2.1a: Project Evaluation Plan

Appendix 2.1b: Organization of a LEAP Workshop

Appendix 2.1c: LEAP Workshop Schedule

Appendix 2.2: Letter to Michael Aherne

Appendix 2.2.1: LEAP Facilitators

Appendix 2.2.2: Facilitator’s Guide

Appendix 2.2.3a: Facilitator Competencies

Appendix 2.2.3b: Facilitator Self-Evaluation

Appendix 2.2.3c: Facilitator Evaluation

Appendix 2.2.4: Local Planners Guide

Appendix 2.4.1: Telementoring Education Series

Appendix 2.4.2: Provincial Palliative Care Rounds

Appendix 2.5a: Palliative Care Curriculum and HCA Competencies

Appendix 2.5b: Health Care Aide Palliative Care Education Evaluation

Appendix 2.5c: Facilitator Feedback Form

Appendix 3.1a: Client and Family Survey Post Cards (see attachments)

Appendix 3.1b: Envelope Information

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Appendix 3.1c: Protocol for Palliative Care Satisfaction Survey

Appendix 3.2a: Survey Clinical Guidelines and Educational Resources

Appendix 3.2b: Clinical Guidelines and Educational Resources

Appendix 3.3a: LEAP Focus Group Questions

Appendix 3.3b: Invitation to Focus Group of Leap Participants

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Standard Terms and Abbreviations

AHW Alberta Health and Wellness

AHS Alberta Health Services

ASAP Alberta Strategic Alliance for Palliative Care

CHPCA Canadian Hospice Palliative Care Association

CCSN Community Cancer Support Network

EOL End-of-Life

HCA Health Care Aide

HQCA Health Quality Council of Alberta

H.O.P.E. Helping Operationalize Palliative Expertise

LEAP Learning Essential Approaches to Palliative and End of Life Care

PPCR Provincial Palliative Care Rounds

PG Project Groups

RHA Regional Health Authorities

WG Working Group

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H.O.P.E. FINAL REPORT EXECUTIVE SUMMARY

June, 2011 Background

With the release of the Continuing Care Health Service Standards in May 2006, Alberta Health and Wellness strongly encouraged each region to develop internal capacity to enhance palliative and end-of-life care across the three streams of care. This proposal grew out of previous work including: priority focus on Home Care and national expectations for end-of-life (EOL) community/home care resulting from the First Ministers’ Agreement of 2004; delineation in 2005 of core palliative care services for Alberta by Alberta Health and Wellness (AHW), together with the Alberta Cancer Board, the Alberta Strategic Alliance for Palliative Care (ASAP), and the health regions; a 2006 provincial gap analysis indicating that palliative care knowledge/skills are not available to the extent required in each health region in Alberta; and the Alberta Continuing Care Standards that specified EOL operational policies and procedures for improved EOL services to clients/families, and encourage each health region to strengthen its internal capacity to enhance palliative/EOL care across three streams of care: home living, supportive living and facility living. A proposal was submitted by Chinook Health that outlined the opportunity to achieve this through collaboration within regions and between regions. The Continuing Care Leaders’ Council supported this proposal and a $500,000.00 grant was awarded by AHW in April 1, 2007 with an end date of March 31, 2009. An Advisory Committee that provided stakeholder representation from every health region, the Alberta Cancer Board, the First Nations and Inuit Health Branch, SEARCH Canada, and AHW was formed. This membership was comprised of clinicians and administrators to help provide input from a variety of perspectives for the project.

Following the completion of the first segment of the project in March 2010, the provincial Executive Director, Palliative Care and Lead Evidence Based Palliative Care reviewed the Project Manager’s summary of project outcomes accomplished from July 2007 to March 2009 and developed a document that identified further project priorities. Following discussions with Alberta Health Services (AHS) regarding these recommended priorities and rationale for changing some of the initial project outcomes and deliverables, funding ($300,881.00) not spent during the initial phase of the project was re-established with a project end date of March 31, 2012. A Working Group (WG), with representation from all zones, the Alberta Cancer Board, and Project Groups (PGs) were established to complete the project. The project work has focused on three major pillars. The first pillar involved building capacity, pillar two focused on knowledge transfer and pillar three identified and assisted with use of best practice guidelines, assessment tools and resources with resumption of the project.

Pillar one focused on two activities: to examine the need for consultation and referral support in North Zone; and to propose a plan to address the need. The second pillar involved nine

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activities to provide and sustain training programs and knowledge transfer for all Zones. The third pillar involved three activities to develop and disseminate best practices in palliative care.

Results The H.O.P.E. Project has met the project outcomes and deliverables within the scope of AHS for each pillar and has also produced 14 extended outcomes and deliverables beyond expectations. Pillar 1: Building capacity Implemented Outcome 1.1: Completed a gap analysis of the referral/consultation patterns of northern health regions to determine how these individuals are currently being supported and the need for 24/7 palliative expertise after office hours. The H.O.P.E. Project gap analysis report showed: • Main consultation pattern outside of the communities: is with the Edmonton Zone Palliative

Care Program, formerly the Edmonton Region Palliative Care Program and the Pain & Symptom Management clinic at the Cross Cancer Institute in Edmonton

• What has worked well: multi-disciplinary teams in Grande Prairie; Whitecourt; Bonnyville, and Fort McMurray, often with local acute care and Primary Care Network support; LEAP Workshops used extensively for training and networking

• Main gaps were: need to increased knowledge and skill in pain/symptom management; need to strengthen local expertise and local teams through training and mentoring; building relationships to support family physicians and multi-disciplinary front line providers in the communities; palliative/EOLcare nurse consultants to: provide follow up with family physicians, support multi-disciplinary teams in communities, and facilitate client/patient care coordination among Home Care, Acute Care and Hospice services; policies and procedures to guide current health care delivery

Implemented Outcome 1.2: Developed a proposed implementation plan (service model) for palliative consultation via videoconferencing with palliative consultative physicians and other multidisciplinary health professionals. • A videoconference consultation plan, including a possible evaluation, based on the Calgary

Zone Rural Consultation model, and the Pain and Symptom Management clinic of Cross Cancer Institute in Edmonton model was developed and discussed with North Zone stakeholders.

• Four consulting physicians in Grande Prairie; Whitecourt; Fort McMurray; and Bonnyville were consulted. Due to the short timeline of the project, the implementation of consultation was not achievable. The North Zone executive wished to consider this consultation proposal in its broader framework of North Zone palliative care planning and priorities.

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Pillar 2: Knowledge Translation Implemented Outcome 2.1: Organized LEAP workshops and compiled and analyzed workshop evaluations. • There were 28 LEAP workshops funded by H.O.P.E. from Oct 2007 to Nov 2010, offered

throughout Alberta. In the Calgary Zone, LEAP education programs were already well underway and supported by the Zone and Primary Care Networks. The majority, 16 (57%) were in the North Zone; 3 (11%) in the Edmonton Zone; 5 (18%) in Central Zone; and 4 (14%) in South Zone.

• There were 633 total participants. 558/633 responses included various disciplines: 69 (12%) physicians; 332 (59%) RNs; 137 (25%) LPNs; and 20 (4%) “others”, which included social work; pharmacy; dietitians

• About a third of doctors and nurses who attended LEAP have been in practice for more than 20 years, compared to LPN and “other” disciplines, where half have been in practice for less than 10 years.

• Two-thirds of physicians attending LEAP had less than 20% of their caseload as palliative, while about 50% of the other disciplines had less than 20%.

• Over 60% of LEAP participants identified being “more comfortable, or “much more comfortable” in every one of the 19 areas of palliative care assessed at the end of the Workshops. Greatest self-reported improvement was in areas of “managing” symptoms; e.g., using different opioids; general cancer pain; pain crisis; delirium; shortness of breath; neurotoxicity.

• Over 90% of physicians, RNs and LPNs and 80% of the other disciplines rated the overall course as “excellent” or “very good”; and over 90% of all participants rated every module as “effective” or “very effective”.

• At pre-test on the knowledge quiz, physicians typically had the highest percent correct, then RNs, then LPNs. At post-test, physicians again had the highest percent correct, and RN’s/LPNs had about the same increased percentage rate. Examples of comments from physicians include:

“…LEAP has made me more comfortable dealing with end-of-life issues, especially pain control and delirium…”

“…I’m starting earlier to introduce the concept of being terminal; asking the patient to tell me what they think is wrong; asking what they want and expect from me…”

Implemented Outcome 2.2. Developed a four part sustainability plan for the delivery of LEAP workshops beyond H.O.P.E. project completion. 2.2.1 Trained LEAP facilitators in the province.

• There have been two workshops to train LEAP Facilitators, one in March of 2008; with 23 individuals, 4 were physicians, 19 were nurses. The second Facilitator training was held in October of 2008; with 22 individuals, 10 of whom attended both Workshop 1 and 2.

• In an evaluation of the Facilitator Training Workshop, the majority of the participants rated the overall quality of training as “very good”, or “excellent”. Their comments on improving the training included: more on “how to teach”; more practice, less lecture.

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• At the end of the H.O.P.E. Project, Alberta has 27 H.O.P.E. trained LEAP Facilitators: 9 physicians and18 nurses. 2.2.2 Developed Facilitator Guide to enhance facilitator’s skills in providing education.

• The H.O.P.E. Project developed a LEAP Workshop Facilitator’s Guide, which includes: o a discussion of the academic and clinical practice preparation expected of

facilitators; o facilitator competencies drawn from the literature and verified by the experts in the

PG ; o best practice tips on presenting and facilitating education sessions; and a list of hard

copy/on-line resources in the literature that facilitators can use for further reading and support

o the H.O.P.E. developed an evaluation tool that allows the facilitators to self-evaluate against the list of competencies, and

o a tool to provide evaluative feedback from the LEAP participants rating a list of core competencies.

2.2.3 Developed a plan to support, mentor and evaluate LEAP facilitators. • A 49 item evaluation tool for Facilitator Self-Evaluation was developed by the H.O.P.E.

Project, based on the 5 areas of Facilitator competencies derived from the literature and verified through the experience of seasoned Alberta Facilitators.

• The Facilitator Self-Evaluation was used by 17 out of 27 (63%) of the cadre of Alberta Facilitators to assess their own skills. The results showed that the Facilitators were most satisfied with their professionalism skills, and knowledge competencies; and were least satisfied with their group management competencies, and learning environment competencies.

• As part of the plan to support and mentor Facilitators, the Alberta Facilitators who were assessing their own skills and who were “quite satisfied” or “satisfied” with the majority of competencies indicated their willingness to be mentors.

2.2.4 Created a guide for organizing LEAP workshops. • The H.O.P.E. Project developed a Local LEAP Workshop Planner’s Guide that includes: a

discussion of the actions, materials and equipment that are needed for a successful Workshop, including options for physicians receiving Main Pro C credits for education.

2.3 Supported palliative care training of nurses from a rural community. • From Grande Prairie, 2 Home Care nurses with palliative care experience; and 2 Acute Care

nurses participated in two 3 day training experiences at the Edmonton Zone Palliative Care Program, (formerly the Edmonton Region Palliative Care Program) during 2008- 2009. The evaluation interviews with the 4 nurses demonstrated that the training had positively impacted their practice in that:

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o it had improved their confidence in pain and symptom management; resulting in fewer people being transferred out of their community (e.g., switching over to methadone);

o these nurses became LEAP Facilitators o fewer calls required for consultation both to Edmonton and with the local consulting

physician thus honing expertise at the community level. One of the quoted comments below supported this theme:

“…And now, after the Edmonton training visit, and LEAP Workshops, and our palliative care physician’s support, we can do just about whatever they can do, and keep our people closer to home to their families. Prior to that we were for sure sending people out to switch over to methadone. We don’t do that anymore. We switch them here...”

o promoted the use and development of local multi-disciplinary rounds in acute care, with support from the local consulting physician; including the trained home care nurses

o consistent use of assessment tools these nurses are currently being increasingly used as resources by staff in both Grande Prairie and Beaver Lodge; Dawson Creek and Ft St John.

2.4 Delivered palliative education via Telehealth / Video Conferencing. 2.4.1 Organized the Telementoring Education Series. • The H.O.P.E. Project sponsored 13 Telementoring Education sessions on a variety of topics

using case study and other presentation formats. • Evaluation data was gathered from an on-line survey from 59 respondents from 11

sessions, held from Sept 2008 to June 2009. Respondents came from each of the 5 Zones of AHS, as well as external stakeholders, even from out-of-province. The vast majority of respondents were nurses who had attended only one session, although about a third had attended 2-3 sessions. They had typically been in practice for more than 20 years, and came from home care settings.

• The comments from health professionals on learning which they can apply in their practice included: clinical management of specific issues; communication skills; new tools for recognizing and assessing pain; understanding pain; palliative sedation; interdisciplinary team involvement; and information on specific medications, e.g., methotrimeprazine.

2.4.2 Facilitated development of provincial palliative grand rounds to continue to provide a mechanism for learning via Telehealth at the provincial level.

• The H.O.P.E. Project developed a committee which organized the process and parameters of monthly provincial rounds via e-health, taking advantage of presentations already offered by the main palliative care programs in Alberta. The committee also used a method developed by telehealth, v-scheduler for prospective participants to schedule attendance at the rounds.

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2.5 Evaluated different education delivery methods (face to face and Telehealth) for Health Care Aide (HCA) education curriculum on palliative/EOL care.

• The Calgary Zone, funded initially through H.O.P.E. for face-to-face sessions from January to June 2009, educated over 400 HCAs. 120 HCA’s were trained in 7 sites in the North Zone: 80 through telehealth sessions from Onoway, in Grande Prairie; High Level; Hythe; LaCrete; Fort McMurray; and Bonnyville, and the remainder in face-to-face sessions in Westlock, Barrhead and Whitecourt.

• Telehealth was as effective in improving self-reported knowledge and self-reported comfort in 14 areas of the CHPCA HCA curriculum as was face-to-face education delivery. All groups improved significantly on all self-reported knowledge and comfort items from pre to post test regardless of method of education delivery.

• A high level of satisfaction was seen on the majority of items for the telehealth delivery and face to face delivery

• Participants in all groups prefer face to face instruction to offer enough time for discussion. • Facilitator and participant feedback indicated having both a videoconference seminar leader

and local facilitators on site during telehealth instruction contributed to the success. • The project compiled a list of strategies for facilitating education sessions via

videoconferencing. Pillar 3: Best Practice Resources/Materials

3.1 Piloted a provincial home care client and family satisfaction survey measuring

accessibility and effectiveness of care services. • The H.O.P.E. Project group, with input from the Health Quality Council of Alberta (HQCA),

developed 16 item patient and 9 item family satisfaction surveys, adapted from a survey from the palliative care program in Calgary.

• To reduce response burden, the survey items appear on three separate small cards for clients and two for families. The surveys were piloted in 5 home care offices in the Central and Edmonton Zones in 2010. There was an 11% response rate (11/100) and they rated very positive about their care, e.g., strongly agreeing that client symptoms were treated quickly and effectively.

• Follow up with home care managers due to the response rate revealed that staff approved of the survey, but system stresses produced conflicting priorities for home care staff that reduced their participation in the pilot test.

3.2 Collected best care practice materials on palliative care for access the Continuing Care Desktop or other available provincial sources. • The H.O.P.E. Project Group developed and implemented a survey of Zones’ Clinical

Practice/ Best Practice Guidelines, Educational Resources and tools that were in use. A compilation of these results, including common tools for assessment was created.

• Clinical Guidelines and Educational Resources materials to be housed on AHSs Intranet.

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3.3 Organized focus groups of LEAP participants to identify if there was a change in their practice following LEAP workshops.

• Data from Post Reflective Exercise forms from 20 physicians and nurses, and follow up focus groups/interviews with 16 RN, LPN and pharmacist LEAP participants showed many examples of reported impact on practice, including

o changes in clinical practice, e.g., managing pain; use of medications for delirium, nausea;

o support for interdisciplinary team and understanding of various roles; o increased confidence and comfort treating palliative patients; o improved communication skills talking with families

Highlights of Outcomes The work accomplished through the H.O.P.E. Project has met the overall goal of enhancing access to quality palliative care services and expertise, particularly in rural regions by: conducting an analysis of referral and consultation resources in communities in Northern Alberta, and developing a proposed service model for palliative care consultation via videoconference with palliative care consulting physicians and other multidisciplinary professionals; providing training and knowledge transfer for all zones through LEAP Workshops and Canadian Hospice and Palliative Care Association (CHPCA) HCA curriculum education sessions, as well as provincial telementoring sessions and coordinating existing provincial palliative care rounds; developing tools, including: the Facilitators’ Guide; the Local Planners’ Guide; Facilitator competencies and resources; Facilitator Self-Evaluation; Facilitator Evaluation by Participants; developing and disseminating best practices in palliative care through: refining client satisfaction and family satisfaction surveys; compiling Clinical Practice/Best Practice Guidelines, Educational Resources and tools used in the zones and housing them on the Alberta Health Services Intranet, Insite; and obtaining examples of the LEAP Workshop impact on practice through follow up information from physicians, nurses and others who attended. Based on the learning from this work, the following recommendations resulted:

Recommendations 1. Recognize the growing strength in local palliative care multi-disciplinary teams in rural

Alberta; provide financial support for rural areas’ planning and networking among existing palliative care consulting physicians and other multi-disciplinary professionals, including resources to facilitate client/patient follow-up and care coordination in the health system to build on those strengths, including use of evolving technology to create increased access while promoting efficiency;

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2. Continue funding for basic LEAP Workshops throughout Alberta; and for Facilitator training;

3. Use and disseminate tools developed through the H.O.P.E. Project for the delivery of LEAP Workshops: LEAP Facilitator Guide; Local Planners Guide; Facilitator competencies; Facilitator Self-Evaluation; Facilitator Evaluation by Participants; and the list of Facilitators willing to mentor accessible through a provincial mechanism;

4. Increase participation in LEAP Workshops and palliative care by family physicians in Alberta, including support for continued physician access to Main Pro C education credits through an AHS mechanism; and for professional education credit for licensed health professionals to maintain their respective competency requirements;

5. Continue participation of Alberta in supporting the National LEAP curriculum update process; including alignment with the National work to promote consistent Facilitator education, preparation and support;

6. Provide a streamlined, consistent provincial process for rural nurses’ and physicians’ training through job shadowing and exchange in tertiary and secondary palliative care programs;

7. Continue to fund HCA training with the CHPCA curriculum using both classroom and

telehealth delivery, with funds to increase and support the pool of Facilitators who can offer the training in either delivery method; and consider on-line learning as an option;

8. Support use of the H.O.P.E. Client and Family Satisfaction Surveys which aligns with Hospice, Palliative and End of Life Care Accreditation Service Standards through Accreditation Canada;

9. Continue to make the compiled Clinical Guidelines/Best Practices and Educational Resources and tools widely available; and continue to strengthen and build provincially standardized clinical guidelines;

10. Establish a provincial Strategic Clinical Network for Palliative and End of Life Care to

support the implementation of the identified recommendations and to further future strategy.

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A key outcome of the project was the creation of the Provincial Advisory Committee to guide the work. This model demonstrated success with a provincial approach to strategy and implementation and for the continuation of such a structure going forward. The tremendous impact the H.O.P.E. project has had throughout the province is evidenced through the many positive outcomes. With a relatively small financial investment, this project has shaped provincial strategies and resulted in significant change in practice, improved knowledge and formation of service delivery models. This work has contributed knowledge and developed recommendations for policy development and further strategic planning and effort in this necessary and essential specialty of health care.

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Helping Operationalize Palliative Expertise (H.O.P.E.) Project

Final Report

June 2011

I. Background

Review of the Literature

It may be helpful, prior to reading the FINAL Report of the multi-faceted H.O.P.E. Project, for the reader to have an understanding of some of the previous work from the literature in the areas that were most relevant to the project work: establishing the need for palliative care education across disciplines; examples of discipline specific and interprofessional palliative care programs that have also included an evaluative component; recent efforts to incorporate telehealth methodology into clinical consultation and education and support; and factors found to influence the effectiveness of continuing education and practice change. A brief review of these areas is presented in this section of the Final Report.

Introduction

The 2010 Senate Report Raising the Bar: A Roadmap for the Future of Palliative Care in Canada (Carstairs, 2010) indicated that ninety percent of Western Canadians (and by extrapolation, all of Canada) do not die suddenly, but rather die from terminal illness, organ failure and frailty, categories for which palliative care can play a large role, and yet there are at least seventy percent of Canadians who do not have access to palliative care. The Senate Report defines palliative care as:

“…whole-person health care that aims to relieve suffering and improve the quality of living and dying. It is multi-disciplinary. It includes all settings of care, such as: the home; the community; the residential hospice; and the hospital. It is care which starts at diagnosis of a life threatening condition, carries though until the death and continues on into bereavement care…” (p.6)

The Senate Report advocated five things to realize the vision for accessible quality palliative care services for all Canadians: a culture of care, sufficient capacity,support for caregivers, integrated services and leadership. One of the strategies to provide sufficient capacity was to offer more education in palliative care. The need for enhanced home care, especially for persons near the end of life, was emphasized in the final report of the Commission on the Future of Health Care in Canada (Romanow, 2002).

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A study on the evolution of home care services for palliative clients in the decade between 1991 and 2001 (Wilson, Truman, Huang, Sheps, and Birch, 2007) indicated that the number of Albertans receiving palliative home care more than doubled, although the relative percent of clients classified as palliative remained below eight percent of all clients per year. Most of the direct care was provided by home support aides, and in the last fiscal year, home support aides provided half of all direct care hours for palliative clients.

Need for Education in Palliative care

In the past, Canadian studies have shown that undergraduate curriculum time for palliative care was perceived to be minimal by medical students, (Oneschuk, MacDonald, Bagshaw, Mayo, Jung, and Hanson, 2002). Another survey on undergraduate palliative medicine education found the median time spent on palliative care to be just 10 hours, (Oneschuk, Moloughney, Jones-McLean, and Challis, 2004), a situation similar to that reported in the UK and other countries (Lloyd-Williams and MacLeod, 2004; Charlton and Currie, 2008). Post graduate medical training programs have been found to suffer the same lack of education (Ogle, Mavis, and Thomason, 2005). There have been indications in Canada that family physician residents do not feel prepared to deal with pain and symptom management aspects of palliative care (Oneschuk and Bruera, 1998). With the aging population and increasing incidence and duration of diseases such as cancer, the demand for palliative care will increase, and even with the number of formal palliative care programs on the rise, the role of the family physician will remain important (Brenneis and Bruera, 1998). The recent Senate Report Raising the Bar: A Roadmap for the Future of Palliative Care in Canada (Carstairs, 2010, p.31) outlined the important developments in palliative care education and training for physicians since 2005. One of these is the advanced training at a post-certification level available to physicians in the one year Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada conjointly accredited program in Palliative Medicine. Twelve medical schools have accredited residency training programs in palliative medicine, and all 17 medical schools in Canada provide palliative care education to undergraduates. Much of the progress has been facilitated by the Educating Future Physicians in Palliative and End-of-life Care (EFPPEC) project funded by Health Canada. There has been evidence that nurses do not feel well enough prepared to manage the complex symptoms involved in palliative care either (Mallory, 2003; Ferrell, Virani, Grant, Rhome, Malloy, Bednash, and Grimm, 2005). A 2007 survey of 91 nursing schools in Canada, conducted by the Canadian Association of Schools of Nursing Task Force on Palliative Care, revealed that palliative and end-of-life education is a required course in only 4% of 49 schools responding; with 17% were offering an elective (Jacono, Cable-Williams, Foster, Mitchell, Lavoie, Richardson, Jewers, Young, and Baxter, 2009). The 2010 Senate Report indicated that similar work to that for undergraduate physicians for training in palliative care is happening in education programs for nurses, social workers, pharmacists and pastoral care workers.

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There have been some improvements, as professional education programs across Canada include training in palliative care for their students, however, a considerable gap in capacity for high quality palliative care services continues to exist for the currently practicing physicians, nurses and health care aides in the field. The Senate Report (Carstairs, 2010) emphasized that training opportunities for current practitioners need to be ongoing, and cited programs such as LEAP (Learning Essential Approaches to Palliative Care) developed by Pallium as helpful in this regard. A survey of practicing Ottawa area physicians showed their perceived barriers to caring for dying people to be: the heavy time commitment, low remuneration, lack of home care resources, and lack of communication with specialists, however, the health care professionals in the same area saw obstacles in physician lack of knowledge and skill, and lack of communication between health care providers (Hall, Weaver, Hupe, and Seely, 1999). The Fraser Valley Cancer Centre surveyed family physicians in southern British Columbia (Samant, 2001), finding 59% of 288 respondents with no training in palliative care, but a higher probability of training in physicians younger than 40 years of age. The vast majority of respondents thought that they would benefit from palliative care continuing education. Similarly, a survey of 78 practicing Manitoba rural family physicians found that 41% had never received education regarding palliative care (Barnabe and Kirk, 2002). These rural physicians indicated that they would prefer to learn through case studies, lectures and self-study, at a location near to their community, during a weekday evening or weekend day. They appeared to be comfortable with their pain and symptom control and identified psychosocial issues in pediatric palliative care, such as bereavement, as a learning need, with time as their greatest obstacle to palliative care education. However, focus group information from their multidisciplinary colleagues pointed to knowledge gaps in physician pain and symptom management, and a need for enhanced communication skills for all team members.

The learning needs and preferences were assessed for registered nurses, registered practical nurses and health care aides in Canadian long term care facilities (Ross, Carswell, Dalziel and Aminzadeh, 2001). A broad range of needs was identified, including managing personal stress, bringing about change, providing care for residents and communication skills. The respondents favoured interactive workshops, demonstration sessions, guest speakers and formal courses. The majority indicated that the main barriers to their attending continuing education sessions was lack of availability and accessibility. Another needs assessment conducted as part of the development of a palliative care education program for rural long term care facility registered nurses, registered practical nurses and health care aides in northern Ontario found that over half of the health care providers (52.1%) had no previous palliative care education or training (Kortes-Miller, Habjan, Kelley, and Fortier, 2007). The highest ranked palliative care learning needs for these long term facility staff were: stress management for staff; understanding and managing the emotional needs of dying individuals and their families; pain and symptom management; and topics on personal care and comfort. Understanding ethical, religious and legal implications and Aboriginal issues in death and dying were high-ranking learning needs across the disciplines. The primary factors influencing their participation in education sessions were: location, or distance to the education programs; loss of pay while attending and cost of

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the registration fee. When asked about their preferred methods for the delivery of education, the vast majority (85.9%) said face-to-face instruction, followed by self-directed learning (39.8%), and videoconferencing (23.4%).

Discipline specific approaches

There have been approaches to continuing education for health professionals working in palliative care that were directed specifically at one discipline, e.g., physicians, nurses and health care aides or nursing assistants. Examples for each discipline of studies that included an evaluation of results are provided below.

Hall, Hupe, and Scott (1998) evaluated a palliative care education program for community based family physicians in Southeastern Ontario developed by the University of Ottawa Institute of Palliative Care. The two week learning experience for community physicians took place at the Ottawa regional palliative care unit. The 22 participants’ overall satisfaction was high, and they were able to identify changes in their practice thought to be a result of the program three months to a year later, e.g., increased understanding and use of pharmacological agents, improved confidence in problem assessment and management, and increased ease of communication with patients, families and colleagues. Based on the recommendations from the evaluation, a new decentralized model was developed. These new features included: a workshop format based on case studies relevant to family physician practice; including all disciplines, not just physicians; with educational strategies to promote team building; and modeling of interdisciplinary care by the instructors. It is important to note, as an incentive for physician participation, that Significant Main Pro 1 and C CME credits were obtained upon completion of the program. The desire for ongoing support and follow-up with community physicians was addressed by development of an informal network called “Pall-Connect”, to take advantage of the strengthened linkages between the regional pain and symptom management team and local physicians and other health care professionals resulting from joint planning and delivery of the education program.

Another study of the impact of 70 ninety minute workshops provided across the province free of charge for Quebec family physicians aimed specifically at ‘breaking bad news’ (Ladouceur, Gagnon, Boule, Girard, Jacques, Frenette, Carrier, Lalonde, and Belisle, 2003), used post-workshop questionnaires assessing the retention of key concepts and the perception of the potential impact on their practice immediately after the workshop and six months later. Part of the evaluation also included commitment to change, asking participants to describe a change that they would make in their usual practice the next time they were called upon to break bad news. Of the original 520 participants mailed a six month follow up questionnaire, the researchers received approximately 30% which could be paired. At follow-up, two-thirds of respondents had to break bad news and close to two-thirds identified a concept in the workshop that helped them carry out the task. The majority of physicians retained the key workshop concepts, both immediately and in the longer term.

A repeated measures design was used to evaluate a pilot course in palliative nursing care developed by the University of Manitoba (McClement, Care, Dean, and Cheang, 2005) to improve practicing nurses’ knowledge regarding cancer pain management and attitudes toward

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the dying patient. The measures were taken on the first day of the 12 week, 36 hour course, on the last day of the course, and three months later for the 16 participants. The course was taught using a multidisciplinary approach, including palliative care nurses, physicians, social workers, chaplains and clinical ethicists as instructors, and used case studies, didactic lectures, group discussion and self-reflection exercises relating to personal attitudes toward death and dying. Course participants spent one day observing on the palliative care unit, listened in on rounds, and interacted with health care team members as cases were discussed. The results showed that both nurses’ knowledge of cancer pain management and their attitudes toward care of the dying improved significantly from pre-course to post-course, and the gains were maintained at the three month follow-up. The project would have been strengthened by evidence of practice change after the training, such as: content analysis of progress notes in charts of their dying patients to detect training application in terms of pain assessment, interventions, and patient and family affective states, and to help assess the link between educational efforts and improved patient outcomes (Jordan, 2000).

One group of health care workers often overlooked is nursing assistant/health care aides (Froggatt, 2000). Ersek and her colleagues have developed and evaluated the Palliative Care Educational Resource Team program (PERT), a comprehensive, end-of-life curriculum delivered in four day-long classes. They reported that nursing assistants’ confidence, knowledge and skills significantly increased (Ersek, Grant, and Kraybill, 2005), but also noted that there was a significant barrier for the participants in attending the classes. They subsequently adapted the PERT program to be a computerized education program offered on a CD in modules, (Nursing Assistant Computerized Education Programme, NA-CEP) allowing participants to proceed at their own pace, without needing to access the internet (Ersek and Wood, 2008). In the evaluation, the program was rated highly by participants in terms of presentation and relevance of the content. After using the program for six weeks, participants increased their knowledge and perceived skills in caring for patients at the end of life, however the impact of the education on actual end-of-life care provided was not assessed.

Importance of interprofessional teamwork

A non-hierarchical multi-disciplinary team is thought to be crucial in the philosophy and delivery of palliative care (Pettifer, Cooper and Munday, 2007), and needs palliative care education to be designed and delivered in a way that supports collaborative practice, i.e., include multiple disciplines (Rock, 2003), and model and encourage teamwork and respect (Bratjman, Hall, and Barnes, 2009). A call for multiprofessional palliative care education, despite its challenges, put it this way (Koffman, 2001):

“…It is only through a team approach that it becomes possible to fully assess patients and families needs, integrate their perceptions into care decisions, sustain a readily available source of professional advice, supervise the application of treatment decisions, monitor progress, and anticipate and support the dying and grieving process… “ p.87

Bringing different professions together for palliative care education sessions has been found to facilitate collaborative working relationships through the appreciation of each other’s roles and skills (MacDougall, Broadhurst, and Chamberlein, 2001; Koffman and Higginson, 2005)

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This review turns to select examples of palliative education evaluation studies which were designed to offer training across disciplines, primarily: physicians and nurses and other allied health professionals as a group; and to registered nurses, registered practical nurses, and nursing assistants/health care aides in long term care facility and community home care settings as a group.

Evaluation of results of interprofessional palliative care education

Recent studies from the United Kingdom reflect the explicit interest in ‘interprofessional teamwork’ in the government health agenda as a key to improving services (Pettifer, Cooper, and Munday, 2007). This is defined as a team with “a discrete identity which supercedes the individual identity of its members. Leadership and information tends to be shared, depending on the problem being faced, and interaction between the members is crucial if the team is to succeed” (Pettifer et al. 2007, p.280). Pettifer and colleagues described the development of an interprofessional teamwork workshop, designed to allow the underlying values and assumptions of the professions such as nursing and medicine, involved in palliative care, as well as the philosophy of palliative care itself to be explored and made explicit. The three hour workshop was offered to an interprofessional group of 16 students attending a masters in palliative care educational program in Coventry, U.K. The special session was uniformly given a very high satisfaction rating in the evaluation.

An earlier study evaluated the impact of attending an interprofessional MSc in palliative care at King’s College, London, England (Koffman and Higginson, 2005), while making the point that “it is an extremely complex undertaking to demonstrate cause and effect of educational programs in such complex social situations as palliative care” (p.265). The authors surveyed the 56 students who attended between 1998 and 2004. They received a response rate of 79%, roughly half physicians, half nurses and one occupational therapist. The former students’ description of career progression, which they ascribed to the program, was significant for both doctors and nurses. Qualitative data from the survey open-ended questions showed four themes of benefit from the interprofessional training experience. These were: lateral thinking, enabling them to think more creatively across their respective professional paradigms; challenging misconceptions, prejudices or stereotypes of each other’s professions; enhancing teamwork opportunities, through a better appreciation of the different roles; and improved professional networks and confidence in their improved ability to address issues with their peers.

A similar Canadian study followed up 353 participants after eight years of offering a three year interdisciplinary education program in palliative care at Lakehead University, in Thunder Bay, Ontario, planned and delivered in collaboration with community partners (Kelley, Habjan, and Aegard, 2004). The program was meant to not only improve the knowledge and skills of individual providers, but also to contribute to the development of palliative care programs in rural communities in Northern Ontario, and develop palliative care trainers to educate their co-workers in the workplace. The response rate was 42%, and showed that 56% of the responding participants were nurses, 13% were physicians; and 10% were counselors/social workers, which was representative of the total participant population. Networking, learning about

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available resources, and community and organizational empowerment were reported as the three most important benefits for participants. Respondents were asked in a yes/no question containing a list of possible changes to indicate whether there had been changes in their practice in those areas. Direct care providers indicated that: they were better able to provide emotional and psychological support; to communicate effectively with palliative care clients and families; they spent more time talking with terminally ill clients; their skill in addressing physiological issues had improved; and they were better able to manage physical pain and symptoms. Ninety–one percent of respondents had shared their palliative care knowledge and skills with other health care providers, and also gave indications of changes in care delivery in their agencies and communities, e.g., 70% said their community has a palliative care committee or team that meets regularly, compared to 9% when the initiative began.

An Ottawa Ontario community-based 30 hour palliative care education program for family physicians and allied health professionals involved small group interdisciplinary work with case-based problems (Hall, Weaver, Hupe and Seely, 1999). The evaluation revealed that the tested knowledge of the participants had significantly improved. Interdisciplinary training for physicians, nurses, social workers and volunteers to improve quality of care for terminally ill cancer and HIV/AIDS patients was offered in Manitoba (Kristjanson, Dudgeon, Nelson, Henteleff and Balneaves, 1997). The program covered: management of symptoms, ethics, psychosocial issues and bereavement for professionals with information on companionship, respite, and support of patients and families for volunteers. The evaluation showed that knowledge of symptom management improved for all disciplines, and all participants showed significant changes to be more open and accepting in attitudes toward death and dying on a standardized test; and volunteers indicated that they were quite satisfied with the program.

This review also includes examples of studies examining the results of palliative care education for nurses, nursing assistants and health care aides in community-based and facility-based long term care. A controlled study evaluated a one year learner-centred palliative care education program for home care program registered nurses, registered nursing assistants and care assistants in a rural district of Sweden, with another comparable rural district in the same region (Thulesius, Petersson, Petersson, and Hakansson, 2002). The control district was purposely chosen to match the intervention district with regards to demography and home care organizational structure. Over 55% of the direct care staff were care assistants. The program was led by an experienced palliative care physician, and focused on a learner-centred approach using small group work, lectures and seminars. The results showed both significantly improved attitudes toward end-of-life care and improved mental health, measured on the Hospital Anxiety and Depression Scale, in the intervention home care staff compared to the control group without the training.

A palliative care education program was developed and implemented in three long term care facilities in Northern Ontario, (Kortes-Miller, Habjan, Kelley, and Fortier, 2007) based on the needs identified through 128 surveys received from roughly half of the registered nurse, registered practical nurse and health care aide staff, and Canadian Hospice Palliative Care Association norms of practice. The curriculum is a 15 hour interdisciplinary palliative care education program of six 2.5 hour sessions that can be offered over several weeks or over two

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days. The program uses face-to-face small group interactive learning, and was delivered through staff within each of the three facilities, who were recognized leaders with palliative care experience. The program included a resource binder for both participants and the local instructors. The program was strongly supported by the facility management and administration, who encouraged staff to participate. The evaluation by participants indicated that they found the content very useful for their practice, and the program met their learning needs. The format of being delivered on-site and the timeframe were well received. The participants appreciated hearing different perspectives on the same problem from a variety of disciplines.

Considering that the majority of direct care in many palliative care settings is provided by health care aides, research is needed to really focus on their perceptions of the relevance of training to their work, the supports they require and the factors that facilitate or hinder their implementation of new skills (Stollee, Esbaugh, Aylward, Cathers, Harvey, Hillier, Keat and Feightner, 2005)

Use of telehealth & videoconferencing

In the last several decades, telehealth has been increasingly used by a wide variety of medical specialties (Picot, 1998). In mental health services to rural areas, for example, access by telehealth to a specialist can include learning opportunities for front line staff that lead to enhanced services to their clients (Jerome et al., 2000; Mitchell and Robinson, 2000). A recent comprehensive review (Hilty, Marks, Urness, Yellowlees, and Nesbitt, 2004) found telehealth was employed for clinical assessment and evaluation and education and provided efficient and accessible specialty consultation. In palliative care, the potential for video-visits in rural home care has been recently established (Hebert, Brant, Hailey, and van der Pol, 2006). Pain and symptom management for palliative care clients and families; and skills and confidence for local clinical personnel can be improved through access to consultation support in communities closer to home, especially when distance, cost and symptoms make travel difficult (Coyle, Khijainova, Francavilla, and Gonzales, 2002). Alberta has been exploring the use of telehealth for specialist consultation in rural palliative care (Calgary Health Region, 2007; Watanabe, Fairchild, Pituskin, and Kralt, 2010). Each pilot is described in more detail below. The Rural Palliative Telehealth Project (Calgary Health Region, 2007) was an 18-month project (September 1, 2005 to March 31, 2007) which targeted adults with a palliative diagnosis. The project goals included: to improve pain and symptom management for palliative patients in the rural communities of the Calgary Health Region through access to video-communication with a palliative physician, clinical nurse specialist, and nurse clinician; to improve case coordination through participation in video case conferences with home care staff; and to improve confidence and competency in palliative symptom management in rural home care, acute care and long-term care nursing staff, pharmacists, physicians and team members through participation in the video-consultation process. The project showed improved access to consulting services in that: 110 cases benefited during the project period from initial or follow up sessions with the consultation team by telehealth, most through pre-scheduled conferences, typically cancer-related home care palliative case reviews referred by the family physician. There were 6 patient consultations. Of the 104 case reviews, 24% resulted in transfer to Calgary being avoided;

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emergency room visits were avoided in 22% of the cases; and hospitalization was avoided in 18% of the cases reviewed. Similar reduced need for travel results were seen for the patient consultations. The study concluded that rural palliative care consultation by telehealth resulted in: improved access to secondary-level consultations; improved case coordination and home support; reduced patient and consultant travel; improved symptom management for rural patients; increased participation of local acute-care/home-care nursing staff and primary care physicians in the consultation process, and high patient and consulting physician satisfaction.

In the Edmonton area of Alberta, pain and symptom management and supportive care services for people with advanced cancer are well-established at the Cross Cancer Institute in Edmonton, where patients have access to an experienced multidisciplinary team of health care practitioners. The multidisciplinary team consists of a palliative care physician, radiation oncologist, clinical pharmacist, nurse practitioner, registered nurse, psychologist, respiratory therapist, physiotherapist, occupational therapist, speech language pathologist, social worker, spiritual care provider and registered dietitian. A recent study examined the impact of a Virtual Pain and Symptom Control Clinic (Watanabe, Fairchild, Pituskin, Kralt, 2010), to provide access through telehealth to consultation services for advanced cancer patients residing in northern and central Alberta using the resources of the multidisciplinary team. The team offered medication and/or other supportive care recommendations for implementation by the referring community family physician, with follow-up visits and management-focused conferences as necessary. The model included first training a total of 15 local nurses in a variety of rural and northern communities. Referred patients were assessed by these specially trained nurses at their nearest community or associate cancer centre. The multidisciplinary team then reviewed the patients’ needs by telehealth and offered their recommendations. As of May 15, 2010, 50 referrals had been received, and 30 eligible cancer patients from 26 rural communities had been seen in consultation. Improvement on standardized test scores for pain, tiredness, nausea, drowsiness, depression, appetite, wellbeing and shortness of breath were noted. Total savings in patient travel were 24 221 km, and 397 hours. Thirteen percent of patients indicated that they would not have been able to afford travel to Edmonton to access the service. A high degree of patient and referring physician satisfaction with the clinic was apparent from satisfaction surveys.

Australia has shown a particular interest in telehealth approaches to rural health care (Dillon, Loermans, Davis and Xu, 2005). A recent pilot project in Western Australia offered a series of 21 two hour videoconference sessions, facilitated by an educational psychologist based in Perth, as a program of both education and support to 146 informal caregivers of chronically ill elderly people in 12 rural towns, with the participation of a local home and community care coordinator at each site (Van Ast and Larson, 2007). The authors conducted qualitative follow-up with seven informal caregivers and the local home and community care coordinators. The informal caregivers indicated that the tips they had received had been helpful, with a large part of the perceived value of the program due to the opportunity to share experiences and problem-solving with peers, since the technology offered them a safe place at a distance to do so. As participant observers, the home and community coordinators became aware of issues unseen previously, and were able to offer more appropriate services, including respite. Based on the small behavioural changes reported by informal caregivers in the pilot, the authors suggest an

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impact on the caregivers’ quality of life and psychological functuoning comparable to face-to-face sessions with a facilitator, at substantially less cost. The pilot results confirmed that telehealth services do not just replicate face-to-face services, but offer care that varies in fundamental ways from that received face-to-face (Currell, Urquhart, Wainwright and Lewis, 2000).

An investigation of the effectiveness of telehealth compared to face to face classroom teaching and self-study for teaching hand assessment techniques to physical therapists (Barden, Clarke, Young, McKee and Regehr, 2000) found no significant differences at post-test on five performance scores, nor on a binary competence score between the direct teaching group and telehealth, but both groups differed significantly from those doing self-study. In both the direct teaching and telehealth sessions, the instructor taught each skill, and demonstrated it, followed by the participants practicing on each other in pairs and receiving direct feedback from the instructor. The authors agreed that telehealth offers the possibility of improving services for rural communities by both facilitating access to specialists for patient care, and providing efficient training of rural professionals.

Factors in successful continuing education and practice change

This review concludes with examples of learning in terms of factors associated with the effectiveness of interprofessional continuing education, and practice change.

In their assessment of the effectiveness and acceptability of interprofessional palliative care education Koffman and Higginson (2005) suggested that:

• the content must be relevant to all participants, and taught at a level that is relevant to all;

• small groups and interactive forums work better than didactic approaches only.

The approach to developing and delivering a research-based palliative care education curriculum in long term care facilities taught Kortes-Miller and colleagues (2007, p.161) that:

• offering continuing education on-site was not only cost-effective, but also contributed to increased participation in the program;

• a major contributor to success was strong support from the facility administration, who were considered equal partners;

• using care providers from the facilities as facilitators was a strong point, since participants continued to use them as resources after the program;

• the curriculum could be adapted to incorporate case studies pertinent to the long term care facility, which resulted in participants being engaged in active learning and discussing their tough situations;

• bringing learners together from different disciplines provided the opportunity to practice and model interprofessional teamwork;

• providing education in long term care should be a continuous task, since learning needs change, and staff change, especially in rural areas.

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A study which used focus groups and a Delphi technique with key informants within the long term care working environment found that management support was the most important factor impacting the effectiveness of continuing education (Stollee, Esbaugh, Aylward, Cathers, Harvey, Hillier, Keat, and Feightner, 2005). The learning included (p.404):

• training in and of itself is not sufficient to ensuring knowledge transfer and competence, with the key to change being support from administration to empower staff to change practice;

• the need to include all disciplines in training, including administration, to facilitate the shared vision for change by administrative, medical, nursing and other front-line workers;

• enabling factors (i.e., conditions and resources within the environment that allow, or enable, an individual to implement new skills) and reinforcing factors (i.e., those that provide an individual with cues or reminders to implement new skills or that reinforce the use of new skills) were identified as important to sustained transfer of learning;

• enabling factors included: opportunities for bedside learning; incentives to attend continuing education programs; easier access to continuing education; staff coverage to allow staff to attend continuing education without being stressed about the consequences of leaving work; physical space necessary to implement new programs; and opportunities to assimilate new material and practice new strategies;

• reinforcing factors included: access to expert resources and networking for ongoing support, consultation and information sharing; mentoring opportunities within and across collaborating facilities; and the use of new technologies such as videoconferencing or websites to support efforts to implement new approaches;

• using care providers from the facilities as facilitators was a strong point, since participants continued to use them as resources after the program;

• the curriculum could be adapted to incorporate case studies pertinent to the long term care facility, which resulted in participants being engaged in active learning and discussing their tough situations;

• bringing learners together from different disciplines provided the opportunity to practice and model interprofessional teamwork;

• providing education in long term care should be a continuous task, since learning needs change, and staff change, especially in rural areas.

Finally, one study described the implementation and evaluation of an educational program (Comprehensive Advanced Palliative Care Education, or CAPCE) designed by palliative pain and symptom management consultants, funded by the Ministry of Health and Long Term Care in southwestern Ontario, with input from 100 stakeholders, to ensure transfer of new palliative care knowledge and skills into practice through participants becoming Palliative Care Resources (Harris, Hillier and Keat, 2007). The program consisted of 40 classroom hours, 70 hours of practical applications, and 10 hours of meetings with mentors/instructors. The program accepts 20 learners each year, typically registered nurses and registered practical nurses from different settings, in each of five local sites in the region, who attend six day-long sessions held over seven months, most held locally. Various learning strategies were used, including; pre-reading

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material; small group discussion of case studies, role play, video clips; on-the-job assignments that are applications of new knowledge; and the completion of a project, meant to both improve practice at the participant’s workplace, and to give them experience in the intended role of Palliative Care Resource for the workplace. A post-program questionnaire was completed, as well as key informant interviews at selected sites with organization sponsors concerning the Palliative Care Resource role, factors affecting implementation and the impact of CAPCE on palliative care practice. The results showed that the content was very helpful and relevant to their work, with the resource guide, case studies and mentoring rated as most valuable to learning. At 3 month follow up, 83% of participants continued to act in their Palliative Care Resource role, having created or revised education initiatives; created or revised palliative care policies; or created mechanisms for regular meetings or case conferences. Learnings in terms of factors that facilitated implementation of the Palliative Care Resource role and practice change included:

• management support in: designating time and resources for the role, and creating an environment where palliative care and staff development were priorities, where the participants’ expertise was valued and other staff were encouraged to use this resource;

• peer and physician support, in their willingness to try new care approaches, and additional tasks to enhance palliative care practice;

• the best way for current practitioners to learn new knowledge and skills and ensure their application to practice is through strategies relevant to how they work and where they work, including “in the moment” learning, and mentoring and networking relationships;

• learning is maximized when participants have the opportunity to practice what they have learned, to do assignments and projects on real-life problems, and to share and teach what they have learned with their peers;

• the mentorship component facilitated the transfer of learned material from the classroom to the bedside as a valued source of information and support;

• requiring the participants to use the internet to access program information and complete on-line evaluation forms increased their capacity to gather information, access resources, and to network with other resources to sustain practice.

In summary, this brief review of the literature indicates the strong need for ongoing interprofessional education in palliative care to support collaborative practice, especially in rural and remote areas. There is clear potential for the expanded use of telehealth and videoconferencing technology for both clinical consultation and continuing education. The assessment and development of palliative care services and education initiatives must take into account the unique values and strengths of rural communities. The examples of studies in this review emphasize the principles of adult learning: to make education as accessible and relevant as possible; with content that acknowledges previous learning, and requires the integration of new knowledge and skills into the current work environment, in ways that matter to and are supported by their peers, mentors and the management and administration of those work environments. These were the principles on which the H.O.P.E. Project was based.

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Policy Context With the release of the Continuing Care Health Service Standards in May 2006, Alberta Health and Wellness strongly encouraged each region to develop internal capacity to enhance palliative and end-of-life care across the three streams of care. This proposal grew out of previous work including:

• Priority focus on Home Care and national expectations for end-of-life (EOL) community/home care resulting from the First Ministers’ Agreement of 2004.

• Delineation in 2005 of core palliative care services for Alberta by Alberta Health and Wellness, together with the Alberta Cancer Board, the Alberta Strategic Alliance for Palliative Care (ASAP), and the health regions

• A 2006 provincial gap analysis indicating that palliative care knowledge/skills are not available to the extent required in each health region in Alberta; and

• The Alberta Continuing Care Standards that specified EOL operational policies and procedures for improved EOL services to clients/families, and encourage each health region to strengthen its internal capacity to enhance palliative/EOL care across three streams of care: home living, supportive living and facility living.

A proposal was submitted by Chinook Health that outlined the opportunity to achieve this through collaboration within regions and between regions. The Continuing Care Leaders’ Council supported this proposal and a $500,000.00 grant was awarded by AHW April 1, 2007 with an end date of March 31, 2010. Chinook received the funding for this project in the summer of 2007.

An Advisory Committee that provided stakeholder representation from every health region, the Alberta Cancer Board, the First Nations and Inuit Health Branch, SEARCH Canada, and Alberta Health and Wellness was formed. This membership was comprised of clinicians and administrators to help provide input from a variety of perspectives for the project (see Appendix A1: Advisory Committee Membership). Initial meetings of the Advisory Committee were held every two months via teleconference starting in November 2006, to establish an action plan, terms of reference, and adjust and approve the proposed budget.

A Project Manager was hired in July 2007 and a Project Evaluator in June 2008. WGs composed of the project manager, committee members and interested individuals were established to complete project work.

During the spring of 2009, an extension of H.O.P.E. was discussed with the AHW representative. A request for an extension of project funds describing the rationale for the extension was developed. In March 2009, due to the restructuring of health care services from regions to zones the original timeline until March 31, 2009 was upheld.

Following the completion of the first segment of the project in March 2010, the provincial Executive Director, Palliative Care and Lead of Palliative Care reviewed the Project Manager’s

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summary of project outcomes accomplished from July 2007 to March 2009 and developed a document that identified further project priorities. Following discussions with AHS regarding these recommended priorities and rationale for changing some of the initial project outcomes and deliverables, funding ($300,881.00) not spent during the initial phase of the project was re-established with a project end date of March 31, 2011. A WG, with representation from all zones, the Alberta Cancer Board, and PGs were established to complete the project.

This WG was comprised of representation from all zones and the Alberta Cancer Board included managers, physicians, and clinician was established, (see Appendix A2: Working Group Membership). The previous Project Manager and Project Evaluator were again retained for completion of the revised project deliverables. WG members were selected and began the work of reviewing project goals and deliverables in March 2010. PGs composed of the project manager, project evaluator, WG members and interested individuals were also established to complete project work. There were a total of eleven PGs: one in Pillar 1; seven in Pillar 2 and three in Pillar 3 as follows:

Pillar 1:

1. Develop an implementation plan for palliative consultation via videoconferencing with palliative consultative physicians and other multidisciplinary health professionals.

Pillar 2:

1. Complete guide for organizing LEAP workshops 2. Develop a plan to support, mentor and evaluate LEAP facilitators. 3. Develop facilitator curriculum to enhance their skills in providing education 4. Develop a sustainability plan for the delivery of LEAP workshops beyond project

completion 5. Facilitate a palliative grand rounds provincial approach to continue to provide a

mechanism for learning via telehealth at a provincial level. 6. Evaluation of telehealth as a method of delivering the HCA curriculum 7. Further exploration of the development of an online version for HCA curriculum with

CHPCA.

Pillar 3:

1. Focus group of LEAP participants to identify change in practice. 2. Implementation of the pilot study of the Provincial Satisfaction Survey 3. Identification of existing Clinical Practice / Best Practice Guidelines, Policies,

Educational Resources and tools specific to palliative care.

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II. Project Description

The overall goal of H.O.P.E. was to enhance access to quality palliative care services and expertise, particularly in rural regions. Through this process three main pillars were identified to strengthen existing practices and address the gaps that exist in knowledge, access to services and coordination of care and included:

1. Build capacity: provide shared expert on-call services on palliative care across the province through physician to physician contact. Interdisciplinary palliative care follow up is to occur following each individual established contact.

2. Provide training programs and knowledge transfer for all regions 3. Develop and disseminate best practices on palliative care

H.O.P.E. outcomes changed from the initial proposal due to changes in the health care environment and following discussions and approval from AHW. Table 1 illustrates the project outcomes; expected deliverables identified in the initial contract and extended deliverables that occurred as a result of the implemented outcomes. Following the table are descriptions of the three pillars include the initial proposed outcome, key deliverables, the implemented outcome, and rationale for the changes.

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Project Outcomes and Deliverables Pillar 1 Expected Deliverable Quarterly reports on the number of phone calls received and

responded through the phone support service; and ,physician and interdisciplinary team satisfaction surveys that gauges and determines the satisfaction levels with the phone support, on call service for palliative care, including satisfaction with service and level(s) of support.

Implemented Outcomes Extended Deliverables 1.1 Completed a gap analysis of the

referral/consultation patterns of northern health regions to determine how these individuals are currently being supported and the need for 24/7 palliative expertise after office hours.

- Report about referral/consultation patterns from gap analysis with results

- Recommendations re service delivery in north zone

1.2 Developed an implementation plan (service model) for palliative consultation via videoconferencing with palliative consultative physicians and other multidisciplinary health professionals.

- Proposal and evaluation plan

Pillar 2 Expected Deliverable Report on the number of palliative health professionals by zone and discipline attending palliative care training courses during the term.

Implemented Outcomes Extended Deliverables 2.1 Organized LEAP workshops and compiled

and analyzed workshop evaluations. - # Workshops by community - # Participants by discipline, include the number of

HCAs educated - Report on the total number of physician's

attending training programs on palliative care - Analysis of results of Evaluation Surveys - Recommendation re continuing with palliative workshops

2.2 Developed a sustainability plan for the delivery of LEAP workshops beyond project completion. 2.2.1 Trained LEAP facilitators in the province. - # Facilitators attending both workshops, Analysis

of evaluation results from Workshop 1 - # Trained LEAP facilitators - Recommendations re training LEAP facilitators

2.2.2 Developed Facilitator Guide to enhance facilitator’s skills in providing education.

- LEAP Facilitator Guide (includes plan to mentor and support facilitators)

- Facilitator competencies 2.2.3 Developed a plan to support, mentor and

evaluate LEAP facilitators. - Facilitator Self-Evaluation (Survey); Analysis of

facilitator self-evaluation - Facilitator Evaluation (Participant Survey) - Recommendations for training, supporting,

mentoring and evaluating facilitators 2.2.4 Created a guide for organizing LEAP

workshops. - Local Planner’s Guide LEAP Workshops - Recommendations for physicians receiving Main Pro C credits

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Pillar 2 Expected Deliverable Report on the total number of visits by palliative experts providing outreach palliative care services in order to enhance expertise on palliative care.

Implemented Outcomes Extended Deliverables 2.3 Supported palliative care training of nurses

from a rural community. - # Nurses trained, description of training, of learning - Recommendations for training nurses

Pillar 2 Expected Deliverable Report on the total number of telementoring programs and the degree to which these programs are increasing used.

Implemented Outcomes Extended Deliverables 2.4 Delivered palliative education via Telehealth

/ Video Conferencing.

2.4.1 Organized the Telementoring Education Series.

- # Education sessions and topics - # Participants/ sites attending - Analysis of evaluation results

2.4.2 Facilitated a palliative grand rounds provincial approach to continue to provide a mechanism for learning via Telehealth at a provincial level.

- Ongoing committees responsible for organizing rounds - Process and parameters of monthly provincial rounds - # of rounds and topics - Report on the total number of

telementoring/palliative grand rounds programs and the degree to which these programs are increasingly being used

- Recommendations for ongoing provincial palliative education via e-health

2.5 Evaluated different education delivery methods (face to face and Telehealth) for Health Care Aide (HCA) education curriculum on palliative/EOL care.

- Analysis of pre and post participant evaluations - Comparison of participant evaluations results for

face to face and videoconferencing delivery of education

- Analysis of facilitator feedback - Tips for facilitating education sessions via videoconferencing - Recommendations for delivering education via

videoconferencing and face to face Pillar 3 Expected Deliverable Provision of collection of best practice materials to be submitted to

the Continuing Care Desktop and made available in hard copy across the province. Integration of provincial palliative care protocols with the suite of resident assessment tools used in continuing care across the province.

Implemented Outcomes Extended Deliverables 3.1 Piloted a provincial patient and family

satisfaction survey around accessibility and effectiveness of palliative and EOL care services.

- Analysis of results from survey - Recommendations for administering a survey to

home care clients and family caregivers

3.2 Collected best care practice materials on palliative care to be placed on the

- Collection of best practice materials on palliative care for Continuing Care Desktop and provincial

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Continuing Care Desktop or other available provincial sources.

website - Recommendations regarding what clinical

guidelines should be available provincially and what clinical guidelines should be standardized provincially

3.3 Organized focus groups of LEAP participants to identify if there is a change in their practice following LEAP workshops.

- Analysis of results from focus groups of LEAP participants - Analysis of results from Physicians Post Reflective Exercise - Analysis of results from LEAP participants Post

Reflective Exercise - Recommendations re best practices in palliative care education - Recommendations on how to assess best

practices in palliative care education

The Three Project Pillars

Pillar 1 Provide shared expert on-call services on palliative care across the province through physician to physician contact. Interdisciplinary palliative care follow up is to occur following each individual established contact.

Description

In 2007, some former rural regional health authorities (RHAs) had established palliative programs, while others appeared to have limited access to such expertise. The development of a 24 hour on call palliative care service was one way of supporting the northern rural communities. During a meeting in Edmonton, in September 2007, Advisory Committee members from the regions whose palliative care programs were in the early stages of development commented that 24 hour expert on call services might not be used by physicians in their regions. Physicians in these communities usually contact palliative experts in Edmonton or Calgary whom they know, so the development of a formal program that offers 24/7 access to palliative expertise may not be required or needed.

Proposed Outcomes

1. Alberta’s physicians have access to 24 hours, 7 days a week palliative expertise and interdisciplinary follow up to ensure that client care is improved.

2. Availability of palliative care shared resources and expertise between physicians and clinicians across the province.

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Key Deliverables 1. Quarterly reports on the number of phone calls received and responded to through the

phone support service.

2. Physician and interdisciplinary team satisfaction surveys that gauges and determines the satisfaction levels with the phone support, on call service for palliative care, including satisfaction with service and level(s) of support.

In consultation with the representative from AHW, it was decided that a gap analysis be conducted wit