Integration of a Palliative Approach in Home, Acute Medical, and Residential Care Settings: Findings from a Province-Wide Survey

BRITISH COLUMBIA PROVINCIAL REPORT Integration of a Palliative Approach in Home, Acute Medical, and Residential Care Settings: Findings from a Province-Wide Survey September 25, 2014

Acknowledgements ipanel Survey Leaders: Richard Sawatzky RN, PhD Associate Professor, School of Nursing Trinity Western University Research Scientist, Centre for Health Evaluation and Outcome Sciences Providence Health Care Research Institute Canada Research Chair Patient Reported Outcomes Della Roberts RN, MSN, CHPCN (C) Clinical Nurse Specialist, End of Life Fraser Health Authority Sheryl Reimer Kirkham RN, PhD Professor, School of Nursing Trinity Western University ipanel Leaders: Kelli Stajduhar RN, PhD Professor, School of Nursing/ Centre on Aging University of Victoria Carolyn Tayler RN, BN, MSA, CON (C) Director, End of Life Care Fraser Health Authority Thank you to the entire ipanel Team (www.ipanel.ca) for their contributions and leadership throughout this endeavour. We would also like to thank all the staff at each of the participating sites that helped with questionnaire distribution and collection. A special thank you to the staff members who were involved with the various aspects of this survey along the way: Ami Bitschy, Lara Russell, Melissa Suzuki, and Will Harding. i

Table of Contents Acknowledgements... i List of Tables... iii List of Figures... iv Executive Summary... v Background... 7 ipanel & Palliative Approach... 7 Provincial Survey... 8 Objectives... 8 Sampling strategy... 8 Description of sample... 9 Questionnaire design... 12 Analysis methods... 12 Provincial Survey Findings... 13 Application of a Palliative Approach... 13 Identification of patients with life limiting condition... 13 Belief that patients would benefit from a palliative approach... 15 Application of a palliative approach to the care of patients... 16 Self Perceived Competence in Dimensions of a Palliative Approach... 18 Acute medical care settings... 19 Home care settings... 20 Residential care settings... 21 Application of different dimensions of a palliative approach... 21 Knowledge and Education for a Palliative Approach... 23 Perceived adequacy of knowledge regarding a palliative approach... 23 How are nurses and HCWs learning in practice?... 25 Conclusion... 27 References... 28 ii

List of Tables Table 1 Number and types of settings within each health authority... 9 Table 2 Sample description of settings... 10 Table 3 Sample description of participants... 11 Table 4 Percentages of low self competence in acute medical care settings... 19 Table 5 Percentages of low self competence in home care settings... 20 Table 6 Percentages of low self competence in residential care settings... 21 Table 7 Application of palliative approach dimensions by nurses and HCWs... 23 Table 8 Percentage of less than adequate knowledge in a palliative approach... 24 iii

List of Figures Figure 1 Geographical distribution of surveyed settings throughout the province of BC... 9 Figure 2 Visual of the survey sample description... 10 Figure 3 Questionnaire content... 12 Figure 4 Patients identified as having life limiting conditions... 14 Figure 5 Patients who would benefit from a palliative approach... 15 Figure 6 Application of a palliative approach to the care of patients... 17 Figure 7 Application of palliative approach dimensions... 22 Figure 8 Preferred resources for a palliative approach in practice... 25 Figure 9 Preferred methods of education for a palliative approach... 26 iv

Executive Summary Supporting people with advancing chronic and life limiting 1 conditions will be a dominant challenge for healthcare delivery in the next half century. The Initiative for a Palliative Approach in Nursing: Evidence and Leadership (www.ipanel.ca) is a practice relevant nursing health services research initiative funded by the Michael Smith Foundation for Health Research to inform how we can best integrate a palliative approach 2 into the care of people with advancing chronic life limiting conditions. This ipanel report focuses on findings from a mixedmethods province wide survey designed to obtain baseline descriptive information relevant to the integration of a palliative approach from Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Healthcare Workers (HCWs) in acute medical care units, residential care facilities, and home care settings. The survey included 114 randomly selected healthcare settings equally drawn from a listing of all eligible settings in five regional health authorities. A total of 1,468 RNs, LPNs, and HCWs across urban and rural settings completed the survey questionnaire. Additionally, 25 nurses (either RNs or LPNs), and 5 HCWs participated in follow up qualitative interviews. The following summary recommendations are supported by the survey findings and provide important information for regional health authorities regarding the integration of a palliative approach. These findings will also inform ongoing ipanel research into the care delivery systems, education, and practice supports needed to integrate a palliative approach. 1. Improved recognition of the life limiting nature of chronic conditions is needed, most urgently by nurses in acute medical care units, but also by nurses and HCWs in home care and residential care settings. On average, RNs, LPNs, and HCWs in acute medical care and home care settings identified only half of their patients as having life limiting conditions. In residential care settings nurses and HCWs on average identified approximately 70% of the residents as having life limiting conditions. Given the high prevalence of chronic lifelimiting conditions in the sampled acute medical care units, a higher percentage was expected. Similarly, given that nearly all people admitted to residential care have chronic life limiting conditions, it was expected that closer to 100% of staff would recognize that nearly all patients are on a progressive illness trajectory that will end their lives. 1 Life limiting conditions: Chronic conditions (or illnesses) expected to limit how long a person has to live, including dementia, lung, kidney and heart diseases, and cancer. 2 Palliative approach: An approach to care focused on improving the quality of life of people with life limiting conditions and their family. It is provided in all healthcare settings. It involves physical, psychological, social and spiritual care. The palliative approach is not delayed until the end stages of an illness but is applied earlier to provide active comfort focused care and a positive approach to reducing suffering. It also promotes understanding of loss and bereavement. v

2. There is a need for consistent application of a palliative approach for people with chronic life limiting conditions in all settings. A palliative approach is not consistently applied by all RNs, LPNs and HCWs in acute medical, home, and residential care settings. Infrequent application of a palliative approach in acute care environments is of particular concern. RNs and LPNs in acute care reported providing a palliative approach to only 50% of patients who they identified as having chronic life limiting conditions. 3. There is a need for improved confidence and knowledge regarding a palliative approach focussing on spiritual, psychological, social, loss & grief support needs, and ethical & legal issues. Nurses and HCWs reported feeling least confident and knowledgeable in areas of spiritual and social needs and ethical and legal issues. These areas are dimensions of care addressed through conversation and relationship with patients and families. Nurses and HCWs feel most confident in the physical care of patients, as well as in personal, professional and inter professional collaboration. 4. Interactional approaches to learning that draws on expertise of colleagues, managers, clinical coordinators and nurse specialists are foundational to the way that nurses and HCWs learn about how to apply a palliative approach in their practice. Nurses and HCWs rely heavily on colleagues to inform their practice of a palliative approach. In addition, face to face learning is the most preferred method for receiving education for nurses and HCWs across settings. vi

Background ipanel & Palliative Approach Although modern medicine has extended life by years, it is still true that, inevitably, each of us lives with a set of conditions that, taken together, are progressively worsening and eventually fatal [2]. The rising number of people facing old age makes it likely that supporting persons with serious chronic and life limiting conditions will be a dominant challenge for healthcare delivery in the next half century [3]. The End of Life (EOL) Action Plan for the province of BC highlights redesign of health services to deliver timely coordinated EOL care as a priority. The plan specifically recommends a population approach that includes earlier identification of individuals with life limiting conditions who would benefit from a palliative approach [4]. People with life limiting conditions are everywhere in our health care system. Yet, it seems that healthcare providers are often not identifying people who are on a dying trajectory until the last days of life [5]. Most people with advancing chronic conditions will not have a predictable time frame before death and may not need specialized palliative care. The 2008 Canadian Institute for Health Information (CIHI) report on end of life care in BC notes that of all those who die, only 27% received palliative care at end of life [5]. However, those living with life limiting conditions such as heart, lung and kidney disease, dementia, and cancer, along with their families, would benefit from the application of palliative WHAT IS A PALLIATIVE APPROACH? This is an approach that applies the principles of palliative care to the care of those living with lifelimiting conditions. This approach is congruent with disease modifying care in that they both strive to meet the physical, psychological, social, and practical needs of the ill person. However, a palliative approach considers these needs through the lens of the disease being progressive and life limiting. A palliative approach recognizes that, although not all people with life limiting conditions require specialized palliative care services, they do require care that is aimed at improving their quality of life, by preventing and relieving suffering through early identification, assessment and treatment of physical, psychosocial and spiritual concerns [1]. care principles regardless of their context of care and stage in the disease trajectory. This palliative approach to care would maximize their ability to live well while concurrently preparing and supporting transitions that eventually will result in death. Registered nurses (RNs), licensed practical nurses (LPNs), and healthcare workers (HCWs) are amongst those who frequently encounter and care for patients with life limiting conditions in every sector of the health care system. 7

The Initiative for a Palliative Approach in Nursing: Evidence and Leadership (www.ipanel.ca) is a practice relevant nursing health services research initiative, composed of leading practitioners, administrators, and academics in nursing throughout the province of BC. ipanel is funded by the Michael Smith Foundation for Health Research BC Nursing Research Initiative. Members of ipanel conduct research to inform how we can best integrate a palliative approach into the care of people with advancing chronic life limiting conditions. Provincial Survey As part of the ipanel research initiative, the team completed a mixed methods province wide survey. The survey was designed to obtain baseline descriptive information relevant to integration of a palliative approach from nurses (RNs and LPNs) and HCWs working in acute medical care units, residential care facilities, and home care settings across BC. Respondents were also given the opportunity to participate in follow up qualitative interviews or focus groups regarding a palliative approach in their workplace. Objectives In addition to providing descriptive information, this report addresses the following questions: 1. To what extent is a palliative approach applied in different types of nursing care settings? 2. How confident are nurses and HCWs in applying palliative dimensions of care to address the needs of people with advancing chronic life limiting conditions and their families? 3. To what extent do nurses and HCWs view their knowledge regarding important palliative dimensions of care as adequate for integrating a palliative approach in practice? 4. What educational resources do nurses and HCWs rely upon to inform their practice of a palliative approach? Sampling strategy A sampling frame of all relevant settings was developed in collaboration with the BC Ministry of Health, Health Authorities and HealthLinkBC. These settings include: (a) hospital based medical services, including general acute medical care units and specialized renal, respiratory, cardiac, oncology and geriatric care units; (b) home care nursing services; and (c) residential care facilities, excluding assisted living and non contracted private facilities. No specialized palliative care units were included. A two stage clustered and stratified sampling strategy was used to identify 114 randomly selected sites from the following five health authorities in BC; Vancouver Island Health Authority (VIHA), Fraser Health Authority (FHA), Interior Health Authority (IHA), Northern Health Authority (NHA), and Vancouver Coastal Health Authority (VCH). The sampling strategy ensured geographical representation of sites within each of the five regional health authorities. 8

The sampling was stratified by type of site (acute medical care units, residential care facilities, and home care settings), size of site (based on a median split of the sizes of sites within each health authority), and, for acute medical care units, whether the site was a specialized or general medical unit. This approach ensured that different types of sites were represented in the sample. Description of sample Sample of surveyed settings: The provincial survey was completed in 2 phases in Figure 1 the blue dots represent the 59 sites surveyed in phase I and the orange dots represent the 55 sites surveyed in phase II. A breakdown of selected sites per setting and health authority can be seen in Table 1. Descriptive information about the sample of settings is provided in Table 2. Figure 1 Geographical distribution of surveyed settings throughout the province of BC Table 1 Number and types of settings within each health authority TYPE OF SETTING FHA IHA NHA VCHA VIHA TOTAL Home Care 8 8 6 7 8 37 Acute Medical 8 8 7 8 8 39 Residential 8 8 7 7 8 38 Total 24 24 20 22 24 114 9

Table 2 Sample description of settings VARIABLE HOME ACUTE MEDICAL * RESIDENTIAL Specialized medical Unit 29 General medical Unit 10 # of beds at the facility (Range, Median) Community population size (Range, Median) 396 642,843 (Range) 16,945 (Median) 4 637 (Range) 54 (Median) * 18 general medical surgical units, 10 general medical units, and 11 medical specialty units. 12 244 (Range) 80 (Median) Sample of participants: All RNs, LPNs, and HCWs at 114 randomly selected healthcare settings were invited to complete quantitative questionnaires in paper or electronic form. The number of questionnaires distributed to each site was based on the site staff list, which included staff who were not at work during the survey period (total of 7190 questionnaires across all sites). An exact response rate could not be determined as it is not known how many nurses and HCWs received surveys at each site. A total of 1,468 RNs, LPNs and HCWs (including regular and casual staff) completed the survey questionnaire, which corresponds with an overall return rate of 20% (approximately 27% of all regular staff). In addition, interviews were completed with 25 RN/LPNs and 5 HCWs. At the time of the survey, there were very few LPNs who work in home care settings and HCWs who work in acute medical care units; these are therefore not represented in the survey sample (Figure 2). Descriptive information about the sample is provided in Table 3. Figure 2 Visual of the survey sample description, N=1,468 10

Table 3 Participant demographic information 1 VARIABLE HOME 2 ACUTE MEDICAL 3 RESIDENTIAL TOTAL* (%) HCW RN LPN RN HCW LPN RN Distribution across settings (%) 6 6 6 20 32 15 16 100 Gender (%) Male 5 2 9 15 13 9 7 10 Female 95 98 91 85 87 90 93 90 Highest level of education (%) High school 5 6 2 Certificate 67 3 5 75 1 29 Licensed practical nurse 3 88 1 92 19 Registered nurse 2 49 4 30 2 45 16 Bachelor's degree 1 42 57 1 50 21 Master's in nursing 2 1 1 1 1 Other 23 5 3 13 16 2 5 11 Employment status (%) Full time 29 19 34 13 18 22 19 19 Part time 23 36 13 24 21 11 24 21 Casual 49 45 53 64 60 68 58 60 Age (in years) Mean (standard deviation) 50 (10) 50 (9) 44 (10) 38 (12) 46 (11) 40 (11) 51 (11) 45 (12) Range 22 67 26 65 22 62 20 66 20 68 20 64 24 75 20 75 Note. The percentages represent weighted population estimates based on the information provided by the provincial sample of 1,433 participants. 1 Missing sample data were 9% for gender, 10% for education, 1% for employment status, and 12% for age. 2,3 There were few LPNs in home care, and HCWs in acute medical care units at the time of this survey. These provider groups/setting are therefore not included in the analysis. * Numbers may not necessarily sum to 100 due to rounding. 11

Questionnaire design The questionnaire was designed to obtain information about the perspectives of nurses and HCWs regarding their confidence, knowledge, and application of a palliative approach, as well as information about their work environment and demographics (Figure 3). Figure 3 Questionnaire content 1 Some questions were modified for Healthcare Workers 2 Adapted from the 2005 National Survey of the Work and Health of Nurses 3 Data on work environment is not provided in this report. Analysis methods Herein, we report the descriptive analyses that address the objective questions outlined on page 8. All statistical analyses have been proportionally weighted to accommodate the stratified and clustered sampling design. These statistics therefore describe the overall province. Qualitative methods of analysis were used to identify common themes arising from the transcribed interviews and focus group data. 12

Provincial Survey Findings The following provides key information relevant to the application of a palliative approach. The findings are reported for the provincial nurses and HCWs in acute medical care, residential care, and home care settings. Application of a Palliative Approach This section of the report addresses the question: To what extent is a palliative approach applied in different types of nursing care settings? Participants were asked the following 3 questions: 1. In your practice setting, how many patients out of ten have life limiting conditions? 2. In your practice setting, how many out of ten of the patients with life limiting conditions would benefit from a palliative approach to care? 3. How often do you apply a palliative approach to your care of persons with life limiting conditions? Identification of patients with life limiting condition/s On average across the BC settings, nurses and HCWs in Acute medical care units and Home care settings indicate that 5 of ten (or 50%) of their patients have life limiting conditions. A greater proportion, 7 of 10 (70%), of patients in Residential care settings are identified as having lifelimiting conditions. Across the province, RNs, LPNs, and HCWs were relatively similar within each setting type (i.e., home, acute medical, residential). These findings indicate the need for improvement in recognition of the life limiting nature of chronic conditions by nurses and HCWs. It was expected that a greater percentage of patients would have been identified as having life limiting chronic conditions. For example, nearly all people admitted to residential care have chronic life limiting conditions, and it would therefore be expected that closer to 100% would have been identified as such. 13

Figure 4 Patients identified as having life limiting conditions 1,2 # of patients out of 10 1 Participants were asked, In your practice setting, how many patients out of ten have life limiting conditions? 2 Missing data for the BC sample across all providers and settings was 7%. Qualitative findings shed light on the factors that influence how patients are identified with lifelimiting conditions or as palliative by nurses in particular settings. One factor revolves around how the term palliative is understood and/or used within each practice setting. Several home care participants indicated the term palliative is reserved for people referred for services (i.e., a physician has indicated their prognosis is last months of life and has enrolled the patient in the BC Palliative Benefits Program). Some acute medical participants noted the term palliative is a designation assigned by the physician indicating a change in the goals of care to supportive or comfort care, whereas those in residential care indicated that the term palliative typically refers to the last days of life or the actively dying time. Another factor was related to how the person was viewed within the different clinical contexts. A clinical context in which treatment is paramount makes it more difficult for nurses to recognize a chronic condition as life limiting. 14

Belief that patients with life limiting conditions would benefit from a palliative approach There is substantial variability in the extent to which nurses and HCWs believe that a palliative approach would be beneficial for their patients with life limiting conditions. On average, nurses and HCWs in BC reported that between 50% and 74% of their patients with life limiting conditions would benefit from a palliative approach (Figure 5). RNs and LPNs in acute medical care units are relatively less likely to do so. Figure 5 Patients with life limiting conditions who would benefit from a palliative approach 1,2 # of patients out of 10 1 Participants were asked, In your practice setting, how many out of ten patients with life limiting conditions would benefit from a palliative approach to care? 2 Missing data for the BC sample across all providers and settings was 9%. The finding that not all nurses and HCWs believe that a palliative approach would be beneficial to patients with chronic life limiting conditions is important and requires further exploration. 15

The expectation had been that participants would indicate that all of their patients with lifelimiting conditions could benefit from a palliative approach. Qualitative findings provide some additional insight. The importance of the inter professional team context in relation to identifying individuals who would benefit from a palliative approach was highlighted in the interviews. For example, some HCWs expressed that they do not have a strong voice within the inter professional team regarding palliative needs or care planning. One HCW described not being part of the formalized care planning despite working closely with the residents: even when they do annual reviews for the residents, we are not present. Application of a palliative approach to the care of patients with life limiting conditions On average across all settings, nurses and HCWs apply a palliative approach in the care of people with chronic life limiting conditions most of the time. However, relative to LPNs and HCWs, RNs are more likely to apply a palliative approach in all settings (72% of RNs apply a palliative approach most of the time). RNs, as a group, are also most consistent in applying a palliative approach (this variability is demonstrated in the size of the boxes Figure 6). HCWs in home care and LPNs in acute medical care units are least likely to apply a palliative approach most of the time (55% and 57%, respectively). Similarly, there is substantially more variability among HCWs and LPNs in these two settings in how often they apply a palliative approach. Overall, it was expected that all nurses and HCWs would apply a palliative approach most of the time in the care of people with chronic life limiting conditions. The findings, however, reveal substantial variation across and within the different care provider groups and settings. From a staffing and skill mix perspective, it is important to note the RNs are consistently more likely to apply a palliative approach in their care settings. In the qualitative interviews, divergent views within the inter professional team about the goals of care, limited team knowledge about what information has been shared with the patient, and limited time, were all identified as affecting integration of a palliative approach in nursing care. An RN in acute care explained: Sometimes you don t have time to communicate well with the family or to look into referrals or talk to the doctor about this issue. 16

Figure 6 Application of a palliative approach to the care of people with life limiting conditions 1,2 How often 1 Participants were asked, How often do you apply a palliative approach to your care of persons with life limiting conditions? 2 Missing data for the BC sample across all providers and settings was 7%. 17

Self Perceived Competence in Dimensions of a Palliative Approach This section of the report addresses the question: How confident are nurses and HCWs in applying palliative dimensions of care to address the needs of people with advancing chronic life limiting conditions and their families? The survey questionnaire included the Palliative Care Nursing Self Competence 3 instrument developed by Jean François Desbiens [6]. This scale is composed of 50 questions measuring nurses self perceived competence in 10 dimensions of palliative care: physical needs in regards to pain management, physical needs in regards to other symptoms, psychological needs, social needs, spiritual needs, needs related to functional status, ethical and legal issues, inter professional collaboration and communication, personal and professional issues related to nursing care, and last hours of life. There were five questions for each dimension. Participants were asked to rate their confidence on a scale of 0 (not at all confident) to 5 (very confident). In this report we provide summaries of each dimension based on the averages of the five corresponding questions. The scores for each individual question are available upon request (info@ipanel.ca). The tables in this section (Tables 4 6) demonstrate the percentage (%) of RNs, LPNs, and HCWs who view themselves as having low confidence (i.e., an average rating of less than 2.5 on a scale of 0 5) in each of the dimensions of a palliative approach. Therefore, the higher the percentages illustrated in the tables, the less confident nurses and HCWs see themselves in those dimensions. The findings are presented separately for each setting and are compared side by side with the overall province. 3 Perceived nursing self competence refers to nurses' judgment about their own capabilities to offer quality care. This self assessment process may promote professional practice and competence development. 18

Acute medical care settings In acute medical care settings across the province, most RNs and LPNs feel confident in all dimensions. The dimensions of lowest confidence are spiritual needs, social needs, and ethical and legal issues. Areas of greater confidence are physical needs pain, and care during last hours of life. Table 4 Percentage of nurses and HCWs who feel low self competence in the dimensions of a palliative approach in acute medical care settings 1 DIMENSIONS OF A PALLIATIVE APPROACH RN LPN HCW 2 BC BC % provider with low confidence * % provider with low confidence * Physical needs: pain 2 1 Physical needs: other symptoms 6 3 Psychological needs 13 10 Social needs 25 23 Spiritual needs 28 27 Needs related to functional status 9 0 Ethical & legal issues 18 15 Inter professional collaboration 5 6 Personal & professional issues 3 3 Last hours of life 4 2 1 Missing data for the BC sample across all providers in acute medical care settings ranged from 3 8% across the 10 dimensions. 2 There were few HCWs in acute medical care units at the time of this survey, therefore this provider group/setting pair were not included in the analysis. * The dimensions where nurses and HCWs feel the least confident are highlighted in rust, and bordered. The dimensions where nurses and HCWs feel the most confident are highlighted in green. In general, the two highest and lowest have been highlighted. In the qualitative interviews, one acute care nurse explained feeling relatively less confident addressing social needs, especially those of family members: And as a nurse, we re going in, we re offering care, we re turning a patient, we re offering pain control so that they re comfortable. And then I m at a loss of what to do for the family. What can I do for them when the person actually passes? 19

Home care settings In home care settings, RNs reported relatively more confidence than HCWs in all dimensions of care. Inter professional collaboration is one of the dimensions of greatest confidence, as is exemplified in the following quote: when the nurse and the doctor can work together in a collegial, respectful relationship, it honors the patient and you are doing the best care possible for that client. You re working as a team. The dimensions of least confidence include those pertaining to spiritual needs, social needs, psychological issues and ethical and legal issues. One participant commented: Ethical is the most difficult that s one I ve struggled with in my nursing Table 5 Percentage of nurses and HCWs who feel low self competence in the dimensions of a palliative approach in home care settings 1 RN LPN 2 HCW DIMENSIONS OF A PALLIATIVE BC BC APPROACH % provider with low confidence * % provider with low confidence * Physical needs: pain 4 13 Physical needs: other symptoms 1 10 Psychological needs 6 10 Social needs 7 19 Spiritual needs 19 23 Needs related to functional status 1 6 Ethical & legal issues 9 12 Inter professional collaboration 1 14 Personal & professional issues 4 6 Last hours of life 1 15 1 Missing data for the BC sample across all providers in home care settings ranged from 1 6% across the 10 dimensions. 2 There were few LPNs in home care at the time of this survey, therefore this provider group/setting pair were not included in the analysis. * The dimensions where nurses and HCWs feel the least confident are highlighted in rust, and bordered. The dimensions where nurses and HCWs feel the most confident are highlighted in green. In general, the two highest and lowest have been highlighted. 20

Residential care settings In residential care settings across the province, RNs, LPNs, and HCWs have the lowest confidence in the dimensions of spiritual needs, social needs, and ethical and legal issues. One participant commented: I think we are lacking lots of these three topics psychological, social and spiritual. I think we focus just in pain management and physical. Residential nurses and HCWs report greater confidence in psychological needs than the other two settings of care. Physical needs (other than pain) was the area of greatest confidence across nurses and HCWs. Table 6 Percentage of nurses and HCWs who feel low self competence in the dimensions of a palliative approach in residential care settings 1 RN LPN HCW DIMENSIONS OF A PALLIATIVE BC BC BC APPROACH % provider with low confidence * % provider with low confidence * % provider with low confidence * Physical needs: pain 3 1 4 Physical needs: other 0 2 4 Psychological needs 5 6 6 Social needs 14 9 15 Spiritual needs 15 13 22 Needs related to functional status 2 3 6 Ethical & legal issues 7 7 14 Inter professional collaboration 2 3 13 Personal & professional issues 1 2 3 Last hours of life 2 3 6 1 Missing data for the BC sample across all providers in residential care settings ranged from 2 6% across the 10 dimensions. * The dimensions where nurses and HCWs feel the least confident are highlighted in rust, and bordered. The dimensions where nurses and HCWs feel the most confident are highlighted in green. In general, the two highest and lowest have been highlighted. Application of different dimensions of a palliative approach To facilitate a relative comparison of different dimensions of a palliative approach, nurses and HCWs were asked to what extent they apply each dimension in their practice. The dimensions assessed included the 10 previously noted along with the following 2 additions: loss & grief support; and disease management. This information was collected only during phase II of the survey (N = 541). Figure 7 provides a relative comparison of the dimensions averaged across all settings and provider groups. In Table 7, the same information is reported for each provider group to facilitate a comparison of LPNs, RNs, and HCWs. In addition, a comparison is provided between the health authority and the province. 21

Figure 7 Application of palliative approach dimensions: all nursing care provider and HCW groups and settings 1,2,3 * 1 This information is based on phase II data only (sample N = 541) and includes the combined responses from all settings and provider groups. 2 Participants were asked, Please indicate how often you apply each of the following dimensions of a palliative approach in your practice setting. 3 Missing data for the BC sample across all providers and settings ranged from 8 10% across the 12 dimensions and the overall rating. * NOTE: Each bar adds up to 100% of responses to a particular dimension. The larger the proportion to the right of the 0% line (the larger the proportion of green in the bar) the more often nurses and HCWs apply that dimension in practice. The dimensions that are applied most frequently are those pertaining to physical needs, disease management, functional status, inter professional collaboration and communication, and personal/professional issues. Figure 7 highlights that ethical and legal issues and spiritual needs are least frequently applied. These areas are the same dimensions where nurses and HCWs have relatively less confidence and knowledge. One home care nurse noted: if it s a religious thing, I refer people on. So for me that s a more difficult area. The application of palliative approach dimensions is similar for each provider group (Table 7). 22

Table 7 Application of palliative approach dimensions by nurses and HCWs 1,2 RN LPN HCW DIMENSIONS OF A PALLIATIVE BC BC BC APPROACH % most or all of the time * % most or all of the time * % most or all of the time * Disease management 72 73 55 Physical needs: pain 93 92 74 Physical needs: other 84 83 71 Psychological needs 71 64 62 Loss & grief support 58 58 61 Social needs 59 58 53 Spiritual needs 45 45 44 Needs related to functional status 81 66 61 Ethical & legal issues 37 35 32 Inter professional collaboration 83 77 58 Personal & professional issues 68 77 69 Last hours of life 74 68 66 Overall 58 61 59 1 This information is based on phase II data only (sample N = 541) and includes the combined responses from all settings. 2 Missing data for the BC sample across all providers and settings ranged from 8 10% across the 12 dimensions and the overall rating. * The palliative approach dimensions that nurses and HCWs apply the least frequently are highlighted in rust, and bordered. The palliative approach dimensions that nurses and HCWs apply the most frequently are highlighted in green. In general, the two highest and lowest have been highlighted. Knowledge and Education for a Palliative Approach This section of the report addresses the questions: (a) To what extent do nurses and HCWs view their knowledge regarding important palliative dimensions of care as adequate for integrating a palliative approach in practice? (b) What educational resources do nurses and HCWs rely upon to inform their practice of a palliative approach? In addition, we provide descriptive information about sources of knowledge and preferred methods of education. As there were no substantial differences seen between contexts of care for knowledge and education, these findings are reported by nursing and HCW provider group only. Perceived adequacy of knowledge regarding a palliative approach Participants were asked to rate the adequacy of their knowledge in regards to the different dimensions of a palliative approach using a scale ranging from 0 (inadequate) to 2 (adequate) to 4 (more than adequate). Table 8 reports the percentage (%) of respondents in BC who indicated a less than adequate level of knowledge (less than 2). The higher the percentage, the less adequate their knowledge in regards to the indicated dimension. 23

Table 8 Percentage of nurses and HCWs having less than adequate knowledge in the dimensions of a palliative approach 1,2 DIMENSIONS OF A PALLIATIVE APPROACH RN LPN HCW BC BC BC % of providers with inadequate knowledge * % of providers with inadequate knowledge * % of providers with inadequate knowledge * Disease management 3 3 21 Physical needs: pain 1 2 11 Physical needs: other 3 3 10 Psychological needs 14 10 17 Social needs 16 15 16 Spiritual needs 24 20 31 Needs related to functional status 3 5 13 Ethical & legal issues 26 28 42 Inter professional collaboration 5 4 21 Personal & professional issues 4 3 13 Last hours of life 6 6 12 Loss and grief support 17 14 16 1 Participants were asked, For each of the following dimensions of a palliative approach, rate how adequate your knowledge is for your care of persons with life limiting conditions and their families. 2 Missing data for the BC sample across all providers and settings ranged from 8 9% across the 12 dimensions. * The dimensions where nurses and HCWs feel their knowledge is the least adequate are highlighted in rust and bordered. The dimensions where nurses and HCWs feel their knowledge is the most adequate are highlighted in green. In general, the two highest and lowest have been highlighted. Most nurses and HCWs viewed their knowledge as adequate or more than adequate in all dimensions. However, between 17% and 36% of nurses and HCWs reported their knowledge being less than adequate to care for people with chronic life limiting conditions in the following four dimensions of a palliative approach: spiritual needs, ethical and legal issues, social needs, and loss and grief support. These correspond with the dimensions of low self perceived confidence. These dimensions of care are addressed through conversation and relationship. In contrast, a greater percentage of respondents reported adequate knowledge in dimensions of physical care and in relation to connection with the team. However, relative to RNs and LPNs, a greater percentage of HCWs indicated inadequate knowledge in relation to disease management and physical needs. 24

How are nurses and HCWs learning in practice? Participants were asked to indicate how often they accessed certain kinds of knowledge while working in their practice setting (Figure 8). Almost all RNs, LPNs, and HCWs rely on colleagues to inform their practice of a palliative approach; overall, 97% rely on colleagues sometimes or often. An acute care nurse says: Just ask for help. It s open communication with colleagues in terms of what s needed and what should be done for a patient. That s invaluable! Figure 8 Preferred resources for a palliative approach in practice 1,2 * 1 Participants were asked, If in your practice there was something that you did not know about a palliative approach, which of the following would you use to find the knowledge that you require? 2 Missing data for the BC sample across all providers and settings ranged from 10 30% across resources. * NOTE: Each bar adds up to 100% of responses to a particular resource. The larger the proportion to the right of the 0% line (the larger the proportion of green in the bar) the more likely the provider is to access that resource in practice. 25

The preference for resources differs substantially across different provider groups and settings. Interestingly, 89% of RNs across settings reported relying sometimes or often on clinical nurse specialists, whereas only 74% of LPNs and HCWs (combined) reported relying on clinical nurse specialists to the same extent. LPNs and HCWs instead reported relying more frequently on their nurse manager or coordinator (91%). As described by this residential care aide: Our team leaders are fabulous. They give us total, 100% support and any questions we have, they re right there. Figure 9 Preferred methods of education 1,2,3 * 1 Data only available for Phase I of the Survey (N=892) 2 Participants were asked, What are your preferred methods for receiving education in a palliative approach? 3 Missing data for the BC sample across all providers and settings ranged from 10 17% across methods (missing data for Other is excluded). * NOTE: Each bar adds up to 100% of all provider group responses to a particular education method. The larger the proportion to the right of the 0% line (the larger the proportion of green in the bar) the more providers preferred that method of education. 26

In addition to preferred resources for a palliative approach in practice, participants were also queried about their preferred methods of receiving education (Figure 9). Face to face learning was notably the most preferred method for receiving education for nurses and HCWs across settings. Although online and self study are accessed, education in a palliative approach would be best received given a face to face format. When interviewed, nurses said they benefitted from just in time strategies such as huddles, care rounds, and mentorship. Conclusion The finding from our survey provide an overview of BC nurses and HCWs perspectives of their confidence, knowledge and application regarding a palliative approach in acute medical, residential and home care settings. Additional analyses, not reported herein, have been conducted to improve our understanding of the differences in self perceived competence, knowledge, professional experience, work place characteristics, and other differences among nurses and HCWs related to the integration of a palliative approach. An important finding from these analyses is that identification of people with chronic lifelimiting conditions is not enough to ensure the integration of a palliative approach. Other factors, including nurses and HCWs beliefs regarding the benefits of a palliative approach, must also be considered. Processes are needed to support clear understanding of the benefit of a palliative approach for particular patient groups. This includes: advance care planning conversations; assessment of symptom burden; incorporating interventions beyond disease modifying treatments to relieve symptom distress; creation of shared care plans that acknowledge ongoing disease advancement; and addressing the unique perspectives of the patients and their families. ipanel is using the results of the survey to inform a more extensive program of research that seeks to address the question: How and in which contexts can a palliative approach better meet the needs of patients with an advancing chronic life limiting illness and their family members and guide the development of innovations in health care delivery systems to better support nursing practice and the health system in British Columbia (BC)? This includes knowledge synthesis, knowledge translation, and primary research to investigate approaches to nursing care delivery that best facilitate the integration of a palliative approach. 27

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