ETHICS CENTRE SUMMARY REPORT | 1

The Palliative Institute is committed to alleviating suffering for patients and their families by supporting excellence in palliative and end-of-life care.

HIGHLIGHTS OF THE COVENANT HEALTH

PALLIATIVE INSTITUTE2012-2017

MAKING A DIFFERENCE IN PALLIATIVE CARE

MESSAGE FROM KAREN MACMILLAN | 2

MESSAGE FROM KAREN MACMILLANSenior Operating Officer, Acute Services, Grey Nuns Community Hospital & Executive Lead, Palliative Care Covenant Health, Alberta, Canada

I am pleased to present to you, the highlights of our work by the Covenant Health Palliative Institute. Since the Institute’s launch in October 2012 we have made significant progress in achieving our goals. We will continue our work on improving and advocating for palliative and end-of-life care, a high priority for Covenant Health. Covenant Health is a key partner in Alberta’s integrated healthcare system and it is Covenant Health’s mission to care for vulnerable populations. With more people living longer with life-threatening illnesses, there is a great need for better palliative care.

Over the last five years and before the Institute was formed, our researchers and clinicians have made steps forward in pain assessment, pain classification, clinical care pathways, and advance care planning. Furthermore, the Institute hosts an annual gathering of the palliative care community to review research and educate practitioners, and has facilitated and held major conferences that focused nationally and internationally on palliative care research and advocacy, and advance care planning research and education.

Some of the factors that have contributed to our success have been our strong links to our partners and our ability to pilot projects and see results in the Covenant Health environment. We have acquired a deep network, academic expertise, and esteem for our work on an international level, and we have the capacity to build on the work that is currently being done. We invite you to contact us to discuss the work we have already completed and work that we may undertake on your behalf or in collaboration with you. For contact information please see the outside back cover of this report.

Sincerely,

Karen Macmillan

ABOUT THE PALLIATIVE INSTITUTE | 3

OUR NETWORK: SUPPORTERS, PARTNERS, COLLABORATORS & CLIENTS

Covenant Foundation

Covenant Health Palliative Care Services

University of Alberta

University of Calgary

Provincial Palliative and End-of-Life Care Steering Committee (Alberta, Canada)

Alberta Hospice Palliative Care Association

Alberta Health

Alberta Health Services

Alberta Innovates – Health Solutions (AIHS)

Collaborative Research and Innovation Opportunities (CRIO) program

Partnerships for Research and Innovation in the Health System (PRIHS) program

Palliative Care Matters Initiative (Canada): 13 national health organizations, 9 experts

Catholic Health Alliance of Canada

Canadian Hospice Palliative Care Association

Canadian Virtual Hospice

ABOUT THE PALLIATIVE INSTITUTE

The Institute supports the Covenant Health strategic objective “We will be leaders in robust palliative and end-of-life care and advocate for it as an essential part of the health system.”

Our Five Pillars

The Institute focuses on supporting excellence in palliative care through clinical support, education, research, policy, and community engagement.

Our Current Goals

Increase palliative care capacity to address gaps in service within Canada

Supporting clinical tools, development and implementation of care pathways, knowledge translation, and public awareness

Increase the use of Advance Care Planning (ACP) and Goals of Care Designation (GCD)

Partnering with ACP CRIO (Collaborative Research & Innovation Opportunities Program) in identification of barriers, facilitators and performance indicators, supporting change management projects, and developing tools for the legal community. The Institute supports policy and education for ACP.

Advocate for a national robust palliative and end-of-life care system

The Palliative Care Matters Initiative, hosted by Covenant Health and collaborative national partners, continues to advocate and support quality palliative care for all Canadians. The Institute, with its collaborators, is working to translate research into practice by publishing and undertaking various knowledge translation approaches.

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CLINICAL TOOLS | 4

End-of-Life (Last Hours to Days) Care Pathway

In response to criticisms of the 1997 Liverpool Care Pathway and in order to improve on a 2011 Albertan version of a pathway, the Palliative Institute, and Edmonton Zone Continuing Care revised and re-released the Palliative Care Pathway as the Care of the Imminently Dying Pathway. The 2017 Care of the Imminently Dying Pathway will be the provincial framework for supporting care in all patients’ last hours to days of life.

The pathway is a set of tools that enhances the quality of care and provides comfort for a person in their last few hours or days of life. It provides guidance for any member of the health care team in any care setting and offers a coordinated approach to care and communication. It can improve outcomes, promote safety, increase satisfaction with care, and optimize the use of resources.

Renal End-Stage Pathway

Conservative Kidney Management (CKM) is a treatment option for managing advanced chronic kidney disease. This clinical care pathway is a resource for patients and healthcare professionals that focuses on quality of life, symptom management, and living well without dialysis. The online pathway is publicly available to patients, families, and health professionals at www.CKMcare.com.

As a Collaborative Member of the Kidney Supportive Care Research Group, the Palliative Institute has supported the development of this pathway. The pathway is currently moving from research to implementation in collaboration with Alberta’s Kidney Strategic Clinical Network.

CLINICAL TOOLS

The Edmonton Symptom Assessment System - Revised

The Edmonton Symptom Assessment System - Revised (ESAS-r) is an internationally recognized nine-item self-report symptom intensity tool developed for palliative care patients, with the option of adding a 10th patient-specific symptom. Three studies that gathered validation evidence of the ESAS were completed, which resulted in a revised version: the ESAS-r. A French translation study of the ESAS-r, including patients’ perspectives, has recently been published. Future research directions include examining the role of the ESAS-r in the symptom assessment of psychosocial and spiritual distress screening including aging, cognitively impaired, and non-cancer palliative care patients.

Edmonton Classification System for Cancer Pain (ECS-CP)

A classification system for cancer pain identifies patients who may require more complex management. This system allows for improved assessment and management and facilitates appropriate comparisons of clinical and research experience. The classification system was created in Edmonton with multiple collaborators. A series of validation studies have been conducted in Edmonton and international sites. Findings from this program of research have been presented and published internationally. Work is underway on translations into French, Spanish, and Catalan.

Family Caregiver Satisfaction

In response to Accreditation Canada’s recommendation, the Edmonton zone palliative care program and provincial Covenant Health palliative care has adopted the FAMCARE-2 tool as a measure of family caregiver satisfaction with palliative care services. A process evaluation study of the FAMCARE-2 was conducted in Edmonton hospices and the Grey Nuns Community Hospital Tertiary Palliative Care Unit. It was also piloted at the St Michael’s palliative unit in Lethbridge to test the appropriateness of the tool in obtaining family satisfaction feedback. The tool is now utilized by all Edmonton and Covenant Health palliative units in Alberta, with regular reporting and posting of family caregiver comments for the staff.

Paying Attention to Patient Dignity

The maintenance of dignity is an inherent component of the palliative care philosophy, frameworks, and clinical care. The Patient Dignity Question (PDQ) is a novel, brief approach for obtaining information about personhood. Patients and their families are asked to respond to the question: “What should your health care providers know about you (your family member) as a person to give you (them) the best care possible?” The primary objective of this pilot study was to prospectively evaluate the quality of using the PDQ on the Tertiary Palliative Care Unit (TPCU) at the Grey Nuns Community Hospital and two acute care hospitals as part of an ongoing Division of Palliative Care Medicine Residency project.

ETHICS CENTRE SUMMARY REPORT | 5

The Palliative Institute has hosted and continues to host conferences in the local, national and international spheres in order to share and further the knowledge and practice of palliative care:

Annual Palliative Education & Research Days Conference

This conference held in Edmonton, Alberta has become well known as a centre of excellence to discuss and further the practice of palliative care. It has been held for 28 years and brings together people interested in palliative care to network, educate health professionals and share research.

European Association for Palliative Care Research Network

This international seminar was held in December 2016 in Banff, Alberta.

CONFERENCES & OTHER ACTIVITIES

The seminar lead and organized by the Palliative Institute in cooperation with the European Palliative Care Research Centre and EAPC Research Network. Researchers shared their experiences of conducting collaborative research within Canada and in both North America and Europe. The conference provided great opportunities to connect, share experiences, and discuss approaches to palliative care research.

Environmental Scan of Canadian Catholic Palliative Care Services and Innovations

The environmental scan describes the scope of palliative care service delivery and innovation in Canadian Catholic healthcare. Catholic facilities identified 22 palliative care innovations. Catholic healthcare organizations completed a self-assessment on their readiness to promote change. The project was

completed in collaboration with the Catholic Health Alliance of Canada.

Knowledge Translation Activities

The Palliative Institute utilizes a variety of methods to support turning research into clinical practice. Infographics, on-line learning modules, world cafés, and change management are some of the techniques beyond publishing that encourages utilizing best practice. The Institute commonly uses Canadian Institutes for Health Research’s Knowledge to Action approach to improving best practice.

See also ACPEL on pg.6 and Palliative Care Matters on pg.7

ADVANCE CARE PLANNING (ACP) & GOALS OF CARE DESIGNATION (GCD): KEY PROJECTS | 6

ADVANCE CARE PLANNING (ACP) & GOALS OF CARE DESIGNATION (GCD): KEY PROJECTS

The Palliative Institute has undertaken projects to increase the use of Advance Care Planning (ACP) and Goals of Care Designation (GCD) in partnership with the Advance Care Planning Collaborative Research and Innovation Opportunities (ACP CRIO) research program:

Integrating performance indicators in Alberta for putting ACP & GCD into practice

The Palliative Institute chaired a collaborative study to identify ACP best practice indicators and distributed a report to provincial stakeholders last year. Currently, the province is auditing the use of many indicators for implementation into the provincial ACP dashboard. A series of reports and academic articles will be published and presented nationally.

Performance indicators provide information about progress and shortcomings in the adoption and

practice of ACP. Both ACP and GCD have been shown to lead medical care according to patients’ desires when they cannot speak for themselves. This utilizes healthcare resources in an effective way.

Barriers and facilitators to the implementation of ACP & GCD – application of learnings in two change management projects: vascular surgery & fractured hip surgical populations

The Palliative Institute is co-leading ACP & GCD change management projects in the fractured hip and vascular surgical populations at two Covenant Health hospitals. For each project, a team of key health care provider and administrative stakeholders, educators, process improvement specialists and researchers have reviewed barriers and facilitators (at the patient, health care provider and system levels) and developed a plan to implement ACP & GCD into regular surgical practice.

International Society of Advance Care Planning & End-of-Life Care Conference

The Palliative Institute hosted the 6th International Society of Advance Care Planning and End-of-Life Care conference (ACPEL 2017) in Banff, Alberta with the support of the Covenant Foundation and other sponsors. 200 people from 16 countries attended. More than 220 research abstracts provided the international scientific committee with ample material to devise a strong conference program that included poster walks and awards. Part of the conference outreach included a national webinar presented by a lay person and physician. Delegates at the conference said that seeing the webinar and being able to interact with ACP leaders was very helpful in understanding where ACP is at internationally.

ACP in lawyers’ practice

In collaboration with the Canadian Bar Association, Legal Education Society of Alberta and Office of the Public Guardian/Trustee and ACP CRIO, the Palliative Institute undertook a research study to assess barriers and facilitators to the lawyers’ role in ACP. Through numerous focus groups and a survey of 133 Alberta lawyers who practice in Wills and Estates, Elder and Health Law, the study identified critical gaps in lawyers’ knowledge of health care practices and documents, and means of equipping lawyers and clients with ACP tools while fostering conversations between lawyers and physicians.

PALLIATIVE CARE MATTERS: BUILDING CONSENSUS TOGETHER

Consensus Statement of the Lay Panel, Palliative Care Matters Conference, November, 2016

PALLIATIVE CARE MATTERS: BUILDING CONSENSUS TOGETHER | 7

The Palliative Care Matters (PCM) initiative is intended to develop a consensus of Canadians on the future of palliative care and catalyze change in healthcare policy and practice. The Palliative Institute initiated, and hosted Palliative Care Matters (PCM) in collaboration with 13 national organizations.

PCM included an Ipsos survey of 1540 Canadians in the summer of 2016, a consensus development conference in Ottawa in November 2016 (touching 1.2 million Canadians), and a Conference Board of Canada report released in June 2017 (providing recommendations for action and implementation).

At the conference, a lay panel of Canadians considered the Ipsos public opinion research, heard the presentations, and questioned experts on how quality palliative care could be delivered. The lay panel made 20 specific recommendations addressing national frameworks, palliative home care, integration of care, education and training, indicators, and public awareness.

Phase 1: Talk Listening to Canadians

From spring 2016 to fall 2016, we gathered information from Canadians about what they know, how they feel, and what they expect.

Phase 2: UnderstandReaching Consensus

At a conference in Ottawa, November 7-9, 2016, a jury (lay panel) of Canadians heard the evidence and developed a Canadian consensus around what needs to happen.

Phase 3: DoCreating Change

The Canadian consensus on palliative care is being brought forward to policy makers, governments and the public so we can all act together and make better palliative care a reality.

Following the conference, The Conference Board of Canada reviewed the consensus statement and the work to date. The report, “Palliative Care Matters: Fostering Change in Canadian Health Care,” provided the following insights on how to move forward implementing the recommendations:

• Acknowledge Patients and the Public as Experts in their own care.

• Develop a Better Understanding of the Landscape - Palliative and end-of-life care is evolving. More people are dying outside of hospital settings than in the past, and this has implications for care provided in homes, communities, and long-term care settings.

• Move from Organic to Strategic to Implementation - Access to quality care is uneven within and across jurisdictions, with some populations significantly underserved. Strategic frameworks and plans can be effective in addressing quality and access.

• Recognize that Workforce Planning Is Essential - The future demand for palliative and end-of-life care services means governments and other stakeholders must develop workforce capacity.

• Foster Current Opportunities in Home and Community Carel - Canada needs to immediately develop enhanced palliative and end-of-life capacity in home, community, and long-term care settings.

Going Forward

The private member’s Bill C-277, “An Act providing for the development of a framework on palliative care in Canada” was enacted in November, 2017. This bill provides further impetus to move forward on an integrated palliative care strategy. PCM is committed to action, organizing a meeting in February 2018, and utilizing the collaborative impact framework to bring palliative care leaders together in developing a national action plan. The Palliative Institute continues to chair and support PCM.

Ensuring that the suffering of our fellow citizens is alleviated is at the heart of a civil society…. It isn’t enough to care; Canada must turn its caring into commitment that ensures palliative care is a part of the Canadian health system and receives the attention and resources it needs.

Don Newman, Chair of the Lay Panel Palliative Care Matters

As a society, we need to place as much emphasis on this critical part of the life journey as we do on bringing life into the world.

RESEARCH & ACADEMIC PUBLICATIONS | 9

Book ChaptersFainsinger, R.L. Dehydration and rehydration. (2015). In: E Bruera,.

Higginson, I.J., von Gunten, C., Morita, T. eds. 2nd Edition Textbook of Palliative Medicine and Supportive Care. Boca Raton, FL: Taylor & Francis Group, 13.74:753-7761.

Nekolaichuk, C. (2015). Hope in end-of-life care. In: E. Bruera, I. Higginson, C. F. von Gunten & T. Morita. Textbook of Palliative Medicine and Supportive Care (2nd ed.) (pp.743-749). Boca Raton, FL: CRC Press, Taylor & Francis.

Edited VolumesPalliative Care Matters: Building a National Consensus. Fassbender, K., eds.

Journal of Palliative Medicine, 21(s1). 2017.

Academic PublicationsAoun, S.M., Slatyer, S., Deas, K., & Nekolaichuk, C. (2017). Family caregiver

participation in palliative care research: Challenging the myth. Journal of Pain & Symptom Management, 53(5): 851-861.

Aoun, S.M., & Nekolaichuk, C. (2014). Improving the evidence base in palliative care to inform practice and policy: thinking outside the box. Journal of Pain & Symptom Management, 48(6):1222-35. doi:10.1016/j.jpainsymman.2014.01.007.

Barbera, L., Seow, H., Sutradhar, R., Chu, A., Burge, F., Fassbender, K., McGrail, K., Lawson, B., Liu, Y., Pataky, R., & Potapov, A. (2015). Quality of End-of-life cancer care in Canada: A four province study. Journal of Oncology Practice, 22 (5):341-355. doi: 10.3747/co.22.2636.

Brunelli, C., Bennett, M.I., Kaasa, S., Fainsinger, R., Sjøgren, P., Mercadante, S., Løhre, E.T., & Caraceni, A., European Association for Palliative Care (EAPC) Research Network; International Association for the Study of Pain (IASP) Cancer Pain Special Interest Group. (2014). Classification of neuropathic pain in cancer patients: A Delphi expert survey report and EAPC/IASP proposal of an algorithm for diagnostic criteria. Pain, 155(12):2707-13. doi: 10.1016/j.pain.2014.09.038.

Bultz, B.D., Waller, A., Cullum, J., Jones, P., Halland, J., Groff, S.L., Leckie, C., Shirt, L., Blanchard, S., Lau, H., Easaw, J., Fassbender, K., & Carlson, L.E. (2013). Implementing routine screening for distress, the sixth vital sign, for patients with head and neck and neurologic cancers. Journal of National Comprehensive Cancer Network, 11(10):1249-61.

Buttenschoen, D., Stephan, J., Watanabe, S., & Nekolaichuk, C. (2014). Health care providers’ use and knowledge of the Edmonton Symptom Assessment System (ESAS): Is there a need to improve information and training? Supportive Care in Cancer, 22:201-208. doi: 10.1007/s00520-013-1955-8.

Chan, M., & Fassbender, K. (2017). Evaluating Public Engagement for a Consensus Development Conference. Journal of Palliative Medicine, 21(S1): S20-S26.

Drummond. J., Schnirer, L., So, S., Mayan, M., Williamson, L.D., Bisanz, J., Fassbender K., & Wiebe, N. (2014). The protocol for the Families First Edmonton trial (FFE): a randomized community-based trial to compare four service integration approaches for families with low-income. BMC Health Services Research, 14:223. doi: 10.1186/1472-6963-14-223.

Drummond, J., Wiebe, N., So, S., Schnirner, L., Bisanz, J., Williamson, D., Mayan, M., Templeton, L., & Fassbender, K. (2016). Service-integration approaches for families with low income: a Families First Edmonton, community-based, randomized, controlled trial. Trials, 17: 343. doi: 10.1186/s13063- 016-1444-8.

Duggleby, W., Ghosh, S., Struthers-Montford, K., Nekolaichuk, C., Cumming, C., Thomas, R., Tonkin, K., & Swindle, J. (2017). Feasibility study of an online intervention to support male spouses of women with breast cancer. Oncology Nursing Forum, 44(6), 765-775. doi: 10.1188/17.ONF.765-775.

Duggleby, W., Tycholiz, J., Holtslander, L., Hudson, P., Nekolaichuk, C., Mirhosseini, N., Parmar, J., Chambers, T., Alook, A., & Swindle, J. (2017). A metasynthesis study of family caregivers’ transition experiences caring for community- dwelling persons with advanced cancer at the end of life. Palliative Medicine, 31(7): 602-616. doi:10.1177/0269216316673548.

Duggleby, W., Cooper, D., Nekolaichuk, C., Cottrell, L., Swindle, J., & Barkway, K. (2016). The psychosocial experiences of older palliative patients while participating in a Living with Hope program. Palliative and Supportive Care, 14: 672-679.

Duggleby, W., Robinson, C.A., Kaasalainen, S., Pesut, B., Nekolaichuk C., MacLeod, R., Keating, N.C., Santos Salas, A., Hallstrom, L.K., Fraser, K.D., Williams, A., Struthers-Montford, K., & Swindle, J. (2016). Developing Navigation Competencies to Care for Older Rural Adults with Advanced Illness. Canadian Journal of Aging, 35(2):206-14. doi: 10.1017/S0714980816000131.

Duggleby, W., Thomas, J., Struthers Montford, K., Thomas, R., Nekolaichuk, C., Ghosh, S., Cumming, C., & Tonkin, K. (2015). Transitions of male partners of women with breast cancer: Hope, guilt and quality of life. Oncology Nursing Forum, 42(2):134-141. doi:10.1188/15.ONF.134-141.

Duggleby, W., Schroeder, D., & Nekolaichuk, C. (2013). Hope and connection: The experience of family caregivers of persons with dementia living in a long term care facility. BMC Geriatrics, 13:112. doi: 10.1186/1471-2318-13-112.

Duggleby, W., Hicks, D., Nekolaichuk, C., Holtslander, L., Williams, A., Chambers, T., & Eby, J. (2012). Hope, older adults, and chronic illness: a metasynthesis of qualitative research. Journal of Advanced Nursing, 68(6):1211-23. doi: 10.1111/j.1365-2648.2011.05919.x.

Fainsinger, R.L., Nekolaichuk, C., Fainsinger, L., Muller, V., Fainsinger, L., Amigo, P., Brisebois, A., Burton-Macleod, S., Ghosh, S., Gilbert, R., Tarumi, Y., Thai, V., & Wolch, G. (2017). What is stable pain control? A prospective longitudinal study to assess the clinical value of a personalized pain goal. Palliative Medicine, http://journals.sagepub.com/doi/pdf/10.1177/0269216317701891.

Fainsinger, R.L. (2014). Palliative sedation – still a complex clinical issue! Current Oncology, 21(2):62-63.

Fainsinger, R.L., Nekolaichuk, C., & Muller, V. (2014) Assessing and classifying cancer Pain: Can we develop an internationally accepted common language? Journal of Palliative Care, 30(4):279-283.

Fainsinger, R.L. (2012). Growth of palliative care programs - how are we doing? Annals of Palliative Medicine, 1(3):232-3. doi:10.3978/j.issn.2224-5820.2012.10.08.

RESEARCH & ACADEMIC PUBLICATIONS

RESEARCH & ACADEMIC PUBLICATIONS | 10

Fassbender, K. (2018). Consensus Development Conference: Promoting Access to Quality Palliative Care in Canada. Journal of Palliative Medicine, 21(S1): S1-8.

Fassbender K, & Watanabe, S. (2015). Early Palliative Care and Its Translation into Oncology Practice in Canada: Barriers and Challenges. Annals of Palliative Medicine, 4(3):135-149. doi:10.3978/j.issn.2224-5820.2015.06.01.

Hagen, N., Howlett, J., Sharma, N.C., Biondo, P., Holroyd-Leduc, J., Fassbender, K., & Simon, J. (2015). Implementing Advance Care Planning across a Health Care System: identifying system-specific barriers and facilitators. Current Oncology, 22 (4):e237-e245. doi:10.3747/co.22.2488.

Hjermstad, M.J., Aass, N., Aielli, F., Bennett, M., Brunelli, C., Caraceni, A., Cavanna, L., Fassbender, K., Feio, M., Haugen, D.F., Jakobsen, G., Laird, B., Løhre, E.T., Martinez, M., Nabal, M., Noguera- Tejedor, A., Pardon, K., Pigni, A., Piva, L., Porta-Sales, J., Rizzi, F., Rondini, E., Sjøgren, P., Strasser, F., Turriziani, A., & Kaasa, S., European Palliative Care Cancer Symptom study (EPCCS) (2016). Characteristics of the case mix, organisation and delivery in cancer palliative care: a challenge for good-quality research. BMJ Supportive & Palliative Care. doi:10.1136/bmjspcare-2015-000997.

Hjermstad, M.J, Lie, H.C., Caraceni, A., Currow, D.C., Fainsinger, R.L, Gundersen, O.E, Haugen, D.F., Heitzer, E., Radbruch, L., Stone, P.C., Strasser, F., Kaasa, S., & Loge, J.H., & European Palliative Care Research Collaborative (EPCRC). (2012). Computer-based symptom assessment is feasible in patients with advanced cancer: results from an international multicenter study, the EPCRC-CSA. Journal of Pain & Symptom Management, 44(5):639-54. doi: 10.1016/j.jpainsymman.2011.10.025.

Howard, M., Bonham, A.J., Heyland, D.K., Sudore, R., Fassbender, K., Robinson, C.A., McKenzie, M., Elston, D., & You, J.J. (2016). Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study. BMJ Open, 6(6):e010375. doi: 10.1136/bmjopen-2015-01037.

Hui, D., Bansal, S., Strasser, F., Morita, T., Caraceni, A., Davis, M., Cherny, N., Kaasa, S., Currow, D., Abernethy, A., Nekolaichuk, C., & Bruera, E. (2015). Indicators of integration of oncology and palliative care programs: An international consensus, Annals of Oncology, 26:1953-1959. doi:10.1093/annonc/mdv269.

Javaheri, P.A., Nekolaichuk, C., Haennel, R., Parliament, M., & McNeely, M. (2015). Feasibility of a pedometer-based walking program for breast and head and neck cancer survivors undergoing radiation therapy. Physiotherapy Canada, 67(2):205-213 (Special Issue: Oncology).

Kassam, A., Douglas, M., Simon, J.E., Cunningham, S., Fassbender, K., Shaw, M., & Davison, S. Behaviours in Advance Care Planning and ACtions Survey (BACPACS): development and validation part 1. (in press). BMC Palliative Care. doi:10.1186/s12904-017-0236-6.

Kazemi-Bajestani, S.M., Becher, H., Fassbender, K., Chu, Q., & Baracos, V.E. (2014). Concurrent evolution of cancer cachexia and heart failure: bilateral effects exist. Journal of Cachexia Sarcopenia Muscle, 5(2):95-104. doi:10.1007/s13539-014-0137.

Kim, C.A, Chu, Q.S., Fassbender, K., Ghosh, S., & Spratlin, J.L. (2017). Predictive Impact of Clinical Benefit in Chemotherapy-treated Advanced Pancreatic Cancer Patients in Northern Alberta. American Journal of Clinical Oncology. doi:10.1097/COC.0000000000000385.

Knudsen, A.K., Aass, N., Heitzer, E., Klepstad, P., Hjermstad, M.J., Schippinger, W., Brenne, E., Kaasa, S., Wasteson, E. Fainsinger RL., On behalf of the European Palliative Care Research Collaborative (EPCRC) (2012). Interviews with patients with advanced cancer--another step towards an international cancer pain classification system. Support Care Cancer, 20(10):2491-500.

Lau, F., Downing, M., Tayler, C., Fassbender, K., Lesperance, M., & Barnett, J. (2013). Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons. Journal of Palliative Care, 29(1):13-21.

Leonard, M., & Nekolaichuk, C., Meagher, D., Barnes, C., Gaudreau, J.D., Watanabe, S., Agar, M., Bush, S.H., & Lawlor, P. (2014). Practical assessment of delirium in palliative care. Journal of Pain & Symptom Management, 48(2);176-190. doi:10.1016/j.jpainsymman.2013.10.024.

Løhre, E.T., Klepstad, P., Bennett, M.l., Brunelli, C.I., Caraceni, A., Fainsinger, R., Knudsen, A., Mercadante, Seb., Sjøgren, P., & Kaasa, S. (2016). From “Breakthrough” to “Episodic” Cancer Pain? A European Association for Palliative Care Research Network Expert Delphi Survey Toward a Common Terminology and Classification of Transient Cancer Pain Exacerbations. Journal of Pain & Symptom Management, 51(6):1013-1019. http//dx.doi.org/10.1016/j.jpainsymman.

Løhre, ET., Klepstad, P., Bennett, M., Brunelli, C., Caraceni, A., Fainsinger, RL., Knudsen, A., Mercadante, S., Sjøgren, P., & Kaasa, S. (2016). Authors’ reply to Davies et al re Incorrect Use of the English Language Term “Episodic”. Journal of Pain & Symptom Management, 52(5):e1-e2.

Lowe, S.S., Nekolaichuk, C., Ghosh, S., Fainsinger, L., Quan, H., & Fainsinger R. (2016). Clinical characteristics of patients having single versus multiple patient encounters within a palliative care programme. BMJ Supportive & Palliative Care, 0:1-9. doi:10.1136/bmjspcare-2015-000985.

Nekolaichuk, C., Huot, A., Gratton, V., Bush, S.H., Tarumi, Y., & Watanabe, S. (2017). Development of a French version of the Edmonton Symptom Assessment System-Revised: A pilot study of palliative care patients’ experiences. Palliative Medicine, 20(9):966-976. doi:10.1089/jpm.2016.0510.

Nekolaichuk, C.L., Fainsinger, R.L., & Lawlor, P. (2013). Challenges of conducting research on cancer pain classification: How do we make sense of the outcomes? Journal of Palliative Medicine, 16(11):1323-1325.

Nekolaichuk, C., Fainsinger, R., Aass, N., Hjermstad, M., Knudsen, A. K., Klepstad, P., Currow, D., & Kaasa, S. (2013). The Edmonton Classification System for Cancer Pain: A comparison of pain classification features and pain intensity across diverse palliative care settings in eight countries. Journal of Palliative Medicine, 16(5):516-523. doi: 10.1089/jpm.2012.0390.

Nekolaichuk, C., Turner, J., Collie, K., Cumming, C., & Stevenson, A. (2013). Cancer patients’ experiences of the early phase of individual counseling in an outpatient psycho-oncology setting. Qualitative Health Research, 23:592-604. doi:10.1177/1049732312470567.

RESEARCH & ACADEMIC PUBLICATIONS | 11

Olsman, E., Duggleby, W., Nekolaichuk, C., Willems, D., Gagnon, J., Kruizinga, R., & Leget, C. (2014). Improving communication on hope in palliative care. A qualitative study of palliative care professionals’ metaphors of hope: grip, source, tune, and vision. Journal of Pain & Symptom Management, 48(5):831-838. doi:10.1016/j.jpainsymman.2014.02.008.

Pesut, B., Duggleby, W., Warner, G., Fassbender, K., Antifeau, E., Hooper, B., Greig, M., & Sullivan, K. (2017). Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care. BMC Palliative Care, 17(2):1-11.

Rayment, C., Hjermstad, M.J., Aass, N., Kaasa, S., Caraceni, A., Strasser, F., Heitzer, E., Fainsinger, R., Bennett, M.I., On behalf of the European Palliative Care Research Collaborative (EPCRC). (2013). Neuropathic cancer pain: Prevalence, severity, analgesics and impact from the European Palliative Care Research Collaborative – Computerised Symptom Assessment study. Palliative Medicine, 27(8):714-721.

Ries, N., Douglas, M., Simon, J., & Fassbender, K. (2018). How Do Lawyers Assist their Clients with Advance Care Planning? Findings from a Cross-Sectional Survey of Lawyers in Alberta, Canada. Alberta Law Review, 55(3).

Ries, N.M., Douglas, M., Simon, J., & Fassbender, K. (2016). Doctors, Lawyers and Advance Care Planning: Time for Innovation to Work Together to Meet Client Needs. Healthcare Policy, 12(2):12-18.

Seow, H., Dhaliwal, G., Fassbender, K., Rangrej, J., Brazil, K., & Fainsinger, R. (2016). The effect of community-based specialist palliative care teams on place of care. Journal of Palliative Medicine, 19(1):16-21.

Seow, H., Sutradhar, R., Sutradhar, R., McGrail, K., Fassbender, K., Pataky, R., Lawson, B., Sussman, J., Burge, F., & Barbera L. (2016). End-of-life cancer care: Temporal association between homecare nursing and hospitalizations. Journal of Palliative Medicine, 19(3):263-70. doi: 10.1089/jpm.2015.0229.

Seow, H., Barbera, L., Pataky, R., Lawson, B., O’Leary, E., Fassbender, K., McGrail, K., Burge, F., Brouwers, M., & Sutradhar, R. (2016). Does increasing home care nursing reduce emergency department visits at the end of life? A population-based cohort study of cancer decedents. Journal of Pain & Symptom Management, 51(2):204-212. doi:10.1016/j.jpainsymman.2015.10.008.

Seow, H., Pataky, R., Lawson, B., O’Leary, E., Sutradhar, R., Fassbender, K., McGrail, K., Barbera, L., Burge, F., Peacock, S., & Hoch, J. (2016). Temporal association between home nursing and hospital costs at end of life in three provinces. Current Oncology, 23(Suppl 1):S42-51. doi:10.3747/co.23.2971.

Simon, J.E., Ghosh, S., Heyland, D., Cooke, T., Davison, S., Holroyd-Leduc, J., Wasylenko, E., Howlett, J., & Fassbender, K. Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO) (2016). Evidence of increasing public participation in advance care planning: a comparison of polls in Alberta between 2007 and 2013. BMJ Supportive & Palliative Care, Published Online First: 27 January 2016. doi:10.1136/bmjspcare-2015-000919.

Sims, M., & Fassbender, K. (2017). Rapid Review and Synthesis of the Palliative Care Matters Scientific Evidence. Journal of Palliative Medicine, 21(S1):S15-S19.

Struthers Montford, K., Duggleby, W., Cumming, C., Thomas, R., Nekolaichuk, C., Ghosh, S., & Tonkin, K. (2016). ‘All I can do is help’: Transition experiences of male spouse caregivers of women with breast cancer. Canadian Oncology Nursing Journal, 26(4):312-317.

Sudore, R.L., Heyland, D.K., Barnes, D.E., Howard, M., Fassbender, K., Robinson, C.A., Boscardin, J., & You, J.J. (2017). Measuring Advance Care Planning: Optimizing the Advance Care Planning Engagement Survey. Journal of Pain & Symptom Management, 53(4):669-681.e8.

Thai, V., Ghosh, S., Tarumi, Y., Wolch, G., Fassbender, K., Lau, F., DeKock, I., Mirosseini, M., Quan, H., Yang, J., & Mayo, P.R. (2016). Clinical prediction survival of advanced cancer patients by palliative care: a multi-site study. International Journal of Palliative Nursing, 22(8):380-7. doi:10.12968/ijpn.2016.22.8.380.

Thai, V., Lau, F., Wolch, G., Yang, J., Quan, H., & Fassbender, K. (2012). Impact of infections on the survival of hospitalized advanced cancer patients. Journal of Pain & Symptom Management, 43(3):549-57. doi:10.1016/j.jpainsymman.2011.04.010.

Vignaroli, E., Bennett, M.I., Nekolaichuk, C., De Lima, L., Wenk, R., Ripamonti, C.I., & Bruera, E. (2012). Strategic pain management: the identification and development of the IAHPC opioid essential prescription package. Journal of Palliative Medicine, 15(2):186-91. doi:10.1089/jpm.2011.0296.

Voeuk, A., Nekolaichuk, C., Fainsinger, R., & Huot, A. (2017). Continuous palliative sedation for existential distress? A survey of Canadian palliative care physicians’ views. Journal of Palliative Care, 31(1):26-33.

Watanabe, S.M., Fairchild, A., Pituskin, E., Borgersen, P., Hanson, J., & Fassbender, K. (2013). Improving access to specialist multidisciplinary palliative care consultation for rural cancer patients by videoconferencing: report of a pilot project. Support Care Cancer, 21(4):1201-7. doi:10.1007/s00520-012-1649-7. Epub 2012 Nov 17.

Watanabe, S.M., Nekolaichuk, C.L, & Beaumont, C. (2012). Palliative care providers’ opinions of the Edmonton symptom assessment system revised (ESAS-r) in clinical practice. Journal of Pain & Symptom Management, 44(5):e2-3. doi:10.1016/j.jpainsymman.2012.07.008.

Watanabe, S.M., Nekolaichuk, C.L., & Beaumont, C. (2012). The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement. Psychooncology, 21(9):977-85. doi:10.1002/pon.1996.

Wilson, K., Dalgleish, T., Chochinov, H., Chary, S., Gagnon, P.R., Macmillan, K., De Luca, M., O’Shea, F., Kuhl, D., & Fainsinger, R.L. (2016). Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Supportive & Palliative Care, 6(2):170-177. doi;10.1136/bmjspcare-2013-000604.

Wolch, G., Ghosh, S., Boyington, C., Watanabe, S., Fainsinger, R., Burton-Macleod, S., Thai, V., Thai, J., & Fassbender K. (2017). Impact of Adding a Pictorial Display to Enhance Recall of Cancer Patient Histories: A Randomized Trial. Journal of Pain and Symptom Management, 53(1):109-115.

Wolch, G.R., Fainsinger, R., Wong, C., & Balachandra, B. (2012). Uncertain cancer diagnosis: the expanded role of the palliative care consultant. Journal of Palliative Medicine, 15(12):1400-3. doi:0.1089/jpm.2011.0409.

ETHICS CENTRE SUMMARY REPORT | 12

Carleen Brenneis, Director Konrad Fassbender, Scientific Director Covenant Health Palliative Institute

Tel: (780) 735-9637 | palliative.institute@covenanthealth.ca | covenanthealth.ca/innovations/palliative-institute

416 St. Marguerite Health Services Centre 1090 Youville Drive West Edmonton Alberta T6L 0A3