OUR CHALLENGE. (Ferrell, 2001, p. xiii)

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2 OUR CHALLENGE The new realities of our world challenge nurses to provide the most competent, expert, evidencebased care provided in a way that embodies compassion, respect for dignity, and an appreciation for the whole person and the family (Ferrell, 2001, p. xiii)

3 Nursing Palliative Care Research and Education Unit Collaborative effort of School of Nursing, Algonquin College and La Cite collegial

4 Our Mission To create an environment that provides leadership, mentorship and support for professors and students pursuing excellence in palliative care research and education

5 Our Vision Through initiatives in education and research, the NPCREU will contribute to excellence in palliative care in Canada and internationally

6 Our Goals To promote PC content in nursing programs and to prepare new scholars in the field of PC. To build capacity in nursing and interprofessional PC research To create a community of PC scholarship through partnerships and interprofessional collaboration To promote and enhance the uptake of PC research evidence into policy and practice To expand and enhance the research training opportunities for undergraduate and graduate students, postdoctoral fellows, and other trainees within the unit

7 Faculty Research Initiatives Nursing education in EOL care learners and educators Interprofessional education and practice in EOL care faculty development workshops and on-line resources EOL delirium Pain and symptom assessment and management Psychosocial issues facing individuals with advanced disease Symptom assessment and management by family caregivers Continuity of care, place of care and place of death PC in the global health context

8 Education Initiatives- Courses within the School of Nursing HSS 4100 Exploring Death and Dying through Literature NSG 4302 Post RN: Palliative Care Nursing NSG 3300 Interprofessional Palliative Care Course: An Introduction to Clinical Perspectives NSG 6135 Palliative/End of Life Care: An Interprofessional Approach

9 Education Initiativesworkshops May 7, Sharing expertise: Enhancing EOL care education for nursing students June 3, Interprofessional faculty development workshop in P/EOL care education June 16, Enhancing opportunities for nursing research in P/EOL care. Presented at International Clinical Nursing Research Conference October 6, Sharing expertise: an interprofessional workshop for educators in EOL care. Presented at 18 th International Congress on Palliative Care, Montreal, Quebec. April 29, Nursing research in PC: Learning with and from each other. University of Ottawa School of Nursing

10 School of Nursing Faculty Susan Brajtman, RN, PhD Frances Fothergill Bourbonnais, RN, PhD Christine McPherson, RN, PhD Algonquin College Site: Valerie Fiset, RN, MScN, CHPCN (c) La Cite Collegiale site: Diane Alain, RN, Med Students: Kelly Kilgour (PHD student) David Wright (PhD student)

11 Student and Educators Needs in Palliative/End-of-Life Care

12 A Survey of Curriculum Content and Student Learning Needs Related to End-of-Life Care in the University of Ottawa Undergraduate Nursing Program Investigators: Brajtman, Fothergill- Bourbonnais, Casey, Alain and Fiset

13 Background Students were indicating that they would like more content in end of life care Some classroom teachers noted that students were eager to discuss end of life issues

14 Study Purpose: To examine the current curriculum content and learning needs of undergraduate students in end-of life care. Methods: 1) Survey of fourth year nursing students from U of O Anglophone & Francophone programs as well as Algonquin site 2) interviews with key informant educators 3) review of course outlines Ethics

15 TOOLS- STUDENTS Demographic data Palliative Care Quiz for Nursing (PCQN)(Ross, McDonald & McGuiness, 1996) 20 items (true and false) assess basic knowledge ofpc. Highest score is 20 Frommelt Attitudes toward Care of the Dying Scale (FATCOD) (Frommelt, 1991) 30 Likert items- higher scores reflect more positive attitudes Highest score is 150 Open ended questions: To determine if students felt prepared To provide an evaluation of their education in EOL care To offer suggestions To identify if a list of topics (provided to students) were covered, in what format and year

16 TOOLS-Key Informant Educators Demographic data: Educational and clinical experience Open ended questions: To provide an assessment of curriculum content To identify if a list of topics (provided to students) were covered, in what format and year

17 Sample Students (n= 58) 18 - Algonquin (72% response rate) 37 - U of O Anglophone program (40% response rate) 3 U of O Francophone program (10% response rate) Key Educators (n=7) 6- U of O, 1- Algonquin

18 Results - Students Experience in end of life care by year Year 1: 26% have experience- 83% do not feel prepared Year 2: 36% have experience- 56% do not feel prepared Year 3: 62% have experience- 39% do not feel prepared Year 4: 91% have experience- 30% do not feel prepared (composite scores of both campuses)

19 Example of results: Frommelt Mean score: 130/150 Example: I would be uncomfortable talking about impending death with the dying person Stongly Disagree: 6.5% Disagree: 47.25% Uncertain: 20.25% Agree: 22.25% Strongly agree: 2.5% Not applicable: 1.25%

20 List of topics given to students Example: Where in your program have you received content related to pain assessment? Year 1 39% Year 2 55% Year 3 78% Year 4 64%

21 Student comments I do not believe there is enough preparation, I would like to see it increased. I see time constraints and course load as a barrier. It would be nice to have sections of courses dedicated to caring for the dying. I don t feel there is enough info, especially on dying process (physically) and how to support family..

22 Educator comments Thematic analysis revealed three themes: hunger for knowledge: the students they begged to know more ; they are just craving working in silos: they could really place it in the curriculum so we are all aware of what is being taught making the opportunities: having the teachers who have the clinical experiences to be able to share with students ; the opportunity I think is there in clinical

23 A survey of educators end of life care learning needs in a Canadian baccalaureate nursing program: We can t teach what we don t know Investigators: Brajtman, Fothergill-Bourbonnais, Alain and Fiset

24 Educator survey Methods: A survey method was employed at the 3 sites of the baccalaureate 4 year program offered in both French and English Sample: Participants included all full time and part time theory and clinical educators 195 surveys were distributed and 53 were returned. Response rate of full time educators was 18/37 (48%) and part time educators was 35/158 (22%) Ethics

25 TOOLS- Educators Demographic data Palliative Care Quiz for Nursing (PCQN)(Ross, McDonald & McGuiness, 1996) Frommelt Attitudes toward Care of the Dying Scale (FATCOD) (Frommelt, 1991) Educators Educational Needs Questionnaire (an adapted version)(patterson et al, 1997) To examine the resources and support required to teach and integrate EOL care content into the curriculum

26 Demographics-educators 03% PhD 33% Masters 50% BScN 14% diploma 53% had taught for at least 6 years 47% taught 0-5 years 43% had taught content related to palliative care in the past year

27 Example of results: Frommelt Mean score: 132/150 Example: I would be uncomfortable talking about impending death with the dying person Stongly Disagree: 37% Disagree: 29% Uncertain: 8% Agree: 21% Strongly agree: 6%

28 Results-Educators Needs Questionnaire 23 % of educators felt well prepared to teach students EOL care 43% felt somewhat prepared 34% did not feel prepared Of 23 educators who taught EOL care, 19/23 saw possibilities e.g. clinical conferences, assigning certain patients Supports: nursing faculty with expertise, and clinical experts in agencies Barriers: no real plan to integrate content in current curriculum, and finding time in theory or clinical courses

29 Examples of Supports In a medical unit, I have encouraged students to reflect on their emotional responses to dying patients and to interact with these patients and their families (English program- part time) We have some faculty with a keen interest in the topic and much clinical expertise (English program-full time)

30 Example of Barriers Competition with other topics for curriculum time and space. Lack of a clear plan for how, when and what specific topics and competencies will be included (English program- full time)

31 Preferred learning formats and content Learning formats: Seminars were ranked first overall (ranked 1,2,3 by 70% of educators) Conferences were 2 nd choice ranked 1,2,3 by 64% of educators Online resources ranked 1,2,3 by 43% of the educators Content: The model developed by CHPCA was used to divide the responses of the educators The content cited in the model reflects topics that more than 50% of the participants suggested

32 Physical - Pharmacological management of pain (58.5%) Delirium (56.6%) Sleep problems (52.8%) - Physical assessment (50.9%) Psychological -Non-pharmacological management of pain (54.7%) -Emotional impact of families (54.7%) -Stress & crisis management for patients & families (61.5%) -Stress management for professional caregivers (58.5%) -Decision support for patients & families (58.5%) Social/Cultural -Ethical/legal/religious influence (62.3%) - Cultural influence (71.7%) - Patient autonomy (52.8%) Pediatric population (69.8%) Spiritual -Suffering/total pain (58.5%) Adapted from: Domains of Issues Associated with Illness and Bereavement in A Model to Guide Hospice Palliative Care: National Principles and Norms of Practice. CHPCA, March 2002

33 Resources required to integrate EOL care content into teaching Audiovisual-64% suggested Access to experts-77% Case studies -74% Online learning 55% Practice guidelines-72% Published literature 75%

34 Phase 3: Development of an educational intervention This needs assessment provided the basis for Phase 3 of the project- the development of an educational intervention to enhance educators competence to facilitate teaching of EOL care May Funding received to offer a half day bilingual workshop & to develop on-line resources for educators June Funding received to offer a full day interprofessional workshop

35 Bringing Knowledge into Practice

36 Bringing Knowledge into Practice Background: Care of individuals who are dying is an integral part of health care Chronic disease is the predominant cause of death in Canada (Statistics Canada, 2007a; 2007b) High prevalence of chronic disease in older adults Providing high-quality evidenced-based care specific to the needs of individuals at the end of life and their families is imperative

37 Evidence-based practice Best evidence, evidence-based theories Clinical judgment, patient assessment, resources Patient preferences & values

38 Clinical Practice Guidelines Standard definition of clinical practice guidelines (CPGs): "systematically developed statements to assist practitioners and patient decisions about appropriate health care for specific circumstances". (Field & Lohr, 1990, p.38)

39 Nursing Clinical Practice Guideline Program Mandate: RNAO To develop, pilot implement, evaluate, disseminate and support the uptake of nursing best practice guidelines Program funded by the Ontario Ministry of Health and Long-Term Care Launched August 2011

40 Guideline Development Panel Christine McPherson RN, PhD Lynn Kachuik RN, BA, MS, CON(C), CHPCN(C) Mary Ann Murray RN, PhD, CON(C), GNC(C), CHPCN(C) Julia Johnston RN(EC), BScN, MN, NP Adult, CHPCN(C) Debbie Gravelle RN, BScN, MHS Beverley Cross RN, BScN, CHPCN(C) (Panel Lead) Sandy White RN, BScN, MN, CHPCN(C) Marg Poling RN, BScN Debora Cowie RPN Carol Sloan RN, CHPCN(C) Loretta Ward RN, CHPCN(C) Beverly Ann Faubert RN, BScN Patricia Lafantaisie RN, BScN

41 Purpose and Scope of the Guideline Purpose- To provide evidence-based recommendations for Registered Nurses and Registered Practical Nurses on best nursing practices for end-of-life care during the last days and hours of life Scope- Care of the patient and family Adults Across settings Not limited to disease type

42 End-of-Life Care Adapted from A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. Canadian Hospice and Palliative Care Association.

43 Guideline Development Complete clinical practice guideline Identify scope and questions Systematic review of existing CPGs Stakeholder review Development of recommendations based on evidence and expert opinion Evaluation of the literature and levels of evidence Grading of existing CPGs (AGREE) and adoption of high quality CPGs Systematic and comprehensive literature review and selection

44 Clinical guideline recommendations Education Recommendations Clinical Practice Recommendations Organization & Policy Recommendations

45 Clinical Practice Recommendations (1) Assessment recommendations: 1.1 Recognizing individuals in the last days and hours of life 1.2 Identifying common physical signs and symptoms present during the last days and hours of life 1.3 Conducting comprehensive assessment of individuals and families based on the Canadian Hospice and Palliative Care Association CHPCA domains of care 1.4 Communicating and educating family

46 Clinical Practice Recommendations (2) Decision support recommendations: 2.1 Identifying and responding to factors that influence individuals and their families involvement in decision making 2.2 Supporting individuals and families to make informed decisions that are consistent with their beliefs, values and preferences in the last days and hours of life

47 Clinical Practice Recommendations (3) Management recommendations: 3.1 Identifying and implementing pain and symptom management interventions 3.2 Identifying and implementing pharmacological and nonpharmacological management approaches 3.3 Educating family and information sharing 3.4 Communicating to facilitate end of life discussions

48 Education, Organization and Policy Recommendations (4 & 5) Education recommendations: 4. Educating undergraduate and post registration nurses with knowledge to provide quality end-of-life care 4.1 content 4.2 structure and process Organization and Policy recommendations: 5. Identifying the supports needed to assist nurses in providing quality end-of-life care

49 Key points CPGs as a way to move research into practice Not cook book approach to care May be limited by: Rigor in the process of development Available evidence Scope- too broad or too specific Needs constant updating User-friendly summary of available evidence Identify gaps in knowledge Next steps

50 Palliative Care & Collaborative Interprofessional Practice

51 Collaborative Interprofessional Practice Designed to promote the active participation of several health care disciplines and professions Enhances patient, family, and communitycentred goals and values Provides mechanisms for continuous communication among health care providers Optimizes staff participation in clinical decision making (within and across disciplines) Fosters respect for the contributions of all providers (Health Canada, 2007)

52 We are all body, mind, spirit. Disease management physical emotional/ psychological Loss/Grief social/cultural spiritual Practical e.g $, housing, etc Existential Life transitions

53 Clinical Care Model (Hospice Palliative Care National Norms, 2002)

54 What do we know about teamwork for patient-centred care? Oandasan et al. (June, 2006): Effective Teamwork in Health Care A Report for The Canadian Health Services Foundation

55 Oandasan et al. (June, 2006): Effective Teamwork in Health Care A Report for The Canadian Health Services Foundation

56 Traditional model of care Assumptions in this model: Boundaries are very clear Power is clearly delineated Relationship is centred on the illness and fixing the patient model: Boundaries are very clear Health Care Professional Power is clearly delineated Patient Relationship is centred on the illness and fixing the patient

57 Multi-Disciplinary Team Work Often results in: Team members work in parallel, responsible for their own professional tasks Each team member may feel this is my patient! Communication is often minimal, through chart and leader Leader is often the physician

58 Patient Centred Care Assumptions in this model: It adopts the patient's perspective. What is it about their interaction with providers, systems, and institutions that patients say matters to them and affects them, either positively or negatively. The health care professional is at the service of the patient. Health Care Professional Patient

59 Collaborative IP Patient-Centred Models of Care Team members collaborate together, and include patient as a team member: Roles blur,but each member has unique skills. Communication is frequent, through chart, meetings, shared decision making processes which include the patient, working toward the same goal Leadership changes as issues change Inter Professional

60 Relational Responsibility Assumptions: Health Care Professional and Patient are both human beings and this is the connector between them. Both retain their role as health care provider and patient but are not defined by this relationship Health Care Professional Health Care Professional Patient Patient

61 Relevance of Interprofessional Collaboration & Practice Education in Palliative EOLC Delivery of Palliative EOLC Interprofessional Education & Practice

62 Interprofessional Collaboration & Palliative Care Learning With, From & About Each Other (Freeth et al,2005) Patient- and family-centred care delivered collaboratively by an interprofessional team is necessary to meet the often complex needs of patients facing life-threatening illnesses and the needs of their families. Education in palliative care provides vehicle for education in interprofessional education and practice.

63 $$$ Funding $$$ Interprofessional Education for Collaborative Patient Centred Practice (national) Health Force Ontario (provincial) Development of Interdisciplinary Initiatives University of Ottawa (Local)

64 IP Palliative Care Education Research Interprofessional Collaborative Competencies (CIHC,2010; Curran et al 2009) Life and Death Meet for All Professions: Development and Evaluation of a Pre-Licensure Interprofessional Palliative Care Course Caring Together in the Last Hours of Life The Concept of Total Pain: An Interdisciplinary Learning Module Building on Knowledge and Experience: Enhancing the Interprofessional Care of Palliative Patients with Delirium through a Self Learning Module Teaching Interprofessional Collaborative Patient-Centred Practice through the Humanities (

65 Palliative Care & Collaborative IP Practice There is a need for continued research and its dissemination, including socio-economic research, and the development and dissemination of best practices. (STILL NOT THERE- Quality End-of-Life Care: A Progress Report, 2005) Ten New Emerging Teams in Palliative Care CIHR Strategic Training Program in Palliative Care Research- CIHR/NCIC-2006 (McGill University, Université Laval and University of Ottawa) Rural Interprofessional Clinical Education The Ottawa Hospital / L Hôpital d Ottawa Inter-Professional Model of Patient Care

66 Holistic Care, Environmental Influences, Interprofessional Relationships, Culture & Society Formal Care Givers (includes Volunteers) Physical Psychological Social/Cultural Spiritual Friends Family Adapted from: Domains of Issues Associated with Illness and Bereavement in A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. CHPCA, March 2002, page 15.

67 Role of Nursing Within the IP Team The degree of contact nurses have with the patient and the family often results in their playing a central role in communicating the patient s and family s needs and concerns to other members of the interprofessional care team and in the cocoordination of decisions related to patient care (Brajtman, Higuchi & Murray, 2009; Miers & Pollard, 2009) Nurses also have the responsibility and opportunity to share with the other members of their team their moral understanding of their patients needs, the care they provide based on this understanding, and the outcomes observed in response to such care (Wright & Brajtman, 2011)

68 Conclusion By virtue of their vast numbers and unique position in all of the areas of health care, nurses have the opportunity to participate in professional, societal, and political initiatives focused on changing the way societies care for dying patients. Nurses can play a leading role in influencing governments health care policies regarding services and resources that impact upon end-of-life care. Nurses can empower patients and their families by supporting a shared decision making model when decisions regarding end-oflife care are being made. When nursing care combines a focus on living as well as possible along with dying as well as possible, patients and their families are provided with opportunities for spiritual growth, quality of life, and hope.

69 OUR CHALLENGE The new realities of our world challenge nurses to provide the most competent, expert, evidence-based care provided in a way that embodies compassion, respect for dignity, and an appreciation for the whole person and the family (Ferrell, 2001p. xiii) This challenge is being met with determination and commitment by nurses throughout the world. Nurses can make a difference in the living and dying experience for the patient and the family as they provide caring, compassionate, and competent care when confronting death alongside those with whom they are privileged to care for.

70 Thank you From Cathy Weber s Grief Series :