Patient and Provider Attitudes and Preferences Regarding Early Palliative Care Delivery for Patients with Advanced Gastrointestinal Cancers: A Prospective Survey.

Early integrated palliative care (EIPC) for patients with advanced cancers requires the involvement of family doctors (FDs) and oncologists. We compared attitudes between patients and their providers regarding the delivery of EIPC. Patients with newly diagnosed incurable gastrointestinal (GI) cancer at a tertiary cancer centre in Ontario, Canada, were surveyed using a study-specific instrument regarding the importance of and preferences for accessing support across eight domains of palliative care. Physicians within the circle of care completed a parallel survey for each patient. The concordance between patient and physician responses was analyzed. A total of 66 patients were surveyed (median age 69, 35% female). All had an oncologist, 12% had a specialist palliative care provider (SPC), and 97% had an FD, but only 41% listed the FD as part of the care team. In total, 95 providers responded (oncologist = 68, FD = 21, SPC = 6; response rate 92%; 1-3 physician responses per patient). Disease management and physical concerns were most important to patients. Patients preferred to access care in these domains from oncologists or SPCs. For all other domains, most patients attributed primary responsibility to self or family rather than any healthcare provider. Thus, concordance was poor between patient and physician responses. Across most domains of palliative care, we found low agreement between cancer patients and their physicians regarding responsibilities for care, with FDs appearing to have limited involvement at this stage.

The perceptions and beliefs of cannabis use among Canadian genitourinary cancer patients.

INTRODUCTION: The legalization of recreational cannabis in Canada in 2018 has led to many patients being curious about the benefits of taking cannabis in conjunction with their cancer treatment. We investigated the perceptions among genitourinary (GU) cancer patients regarding cannabis use as part of their care plans. METHODS: A survey was created to explore current cannabis use behaviors, reasons for cannabis use, and the beliefs of cannabis usefulness towards cancer-related care, including cancer treatment, among GU cancer patients. The survey was distributed across Canada online via RedCAP through social media platforms, email, and patient advocacy groups. The survey was active from August to December 2020. RESULTS: Of eighty-five responses, 52 met inclusion for analysis. Participants included 11 bladder, 26 kidney, and 15 prostate cancer patients. Many (48.1%) participants used cannabis daily and 75% had been using it for more than one year. Cannabis was consumed through oil-based products, edibles, and smoking. The most common reasons for using cannabis were cancer-related anxiety, to prevent cancer progression, cancer-related pain, recreational use, and other, non-cancer-related illness or symptoms. Participants believed cannabis improved their sleep (70.2%), anxiety (65.9%), and overall mood (72.3%). Most participants were either unsure (38.3%) or neutral (31.9%) in the belief that cannabis might decrease their cancer progression. CONCLUSIONS: GU cancer patients use cannabis for a variety of cancer- and non-cancer-related symptoms. Many patients believe cannabis has benefited their cancer-related symptoms. These findings highlight the importance of healthcare providers remaining familiar with current evidence on cannabis to support patient conversations about cannabis use.

Use of cannabis in urological cancer patients: A review to evaluate risk for cancer development, therapeutic use, and symptom management.

INTRODUCTION: Recent recreational legalization of cannabis has resulted in an increased interest in the therapeutic effects of cannabis use in cancer patients, with reports of its use in symptom management and as a risk factor for cancer development. The objective of this review was to evaluate the literature on the association of cannabis use with the risk of cancer development, symptom management, and therapeutic management in the urological cancer (UC) patient population. METHODS: A systematic search of databases and trial registries for papers published from January 1947 to March 2020 on cannabis, symptom and therapeutic management, and cancer development in UC patients was conducted. After screening of full-text articles, data were extracted for evaluation. Studies were eligible if they were in the clinical setting, included ≥5 UC patients, reported use of any cannabis variant, and were written in English. RESULTS: The search retrieved 2456 abstracts, of which 48 full-text articles were reviewed and 21 included in the review. Low-level evidence suggested a correlation between cannabis use and risk for development of testicular cancer. Some support existed for using cannabis for cancer pain and chemotherapy-induced nausea. There was inadequate evidence to substantiate cannabis use as a therapeutic agent for management of UCs. A lack of high-level evidence and robust methodology of the studies limited evaluation of the findings. CONCLUSIONS: Given the paucity of data on cannabis use for therapeutic purposes in UC, large, prospective trials with adequate followup times to observe the effect of cannabis use on UCs are warranted to improve the evidence base.

Exploring patient-reported barriers to advance care planning in family practice.

BACKGROUND: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. METHODS: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. RESULTS: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. CONCLUSIONS: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings.

PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Primary care clinicians' confidence, willingness participation and perceptions of roles in advance care planning discussions with patients: a multi-site survey.

BACKGROUND: People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care. OBJECTIVE: The objective of this study was to describe primary care clinicians' perspectives on having ACP conversations with their patients. METHODS: We conducted a survey of family physicians and non-physician clinicians in primary care in 2014-2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable. RESULTS: The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4). CONCLUSION: Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.

Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial.

OBJECTIVE: The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future. METHODS AND ANALYSIS: This study is a parallel group randomised controlled trial. We aim to enrol 90 participant dyads: patients aged 65 years and older attending outpatient healthcare settings and with indicators they would be at high risk of needing future medical decisions and their SDM. The intervention is the Plan Well Guide decision aid, administered to the patient by a facilitator, with the SDM present. The primary endpoint is change after 3 months in the SDM's ACP engagement using a validated measure of behavioural change (SDM's knowledge, contemplation, self-efficacy and readiness) to enact the role. The secondary endpoints are (1) ACP engagement of the patient measured by a validated survey; (2) change in SDM decisional conflict regarding involvement in future decision-making and (3) postintervention patient decisional conflict regarding preference for life-sustaining treatments. Primary and secondary continuous outcomes will be analysed using the linear regression. The mean difference and 95% CIs will be reported. ETHICS AND DISSEMINATION: Approval was received August 2017 (2017-3714-GRA) from the Hamilton Integrated Research Ethics Board. We plan to disseminate trial results in peer-reviewed journals, at national and international conferences, and via our web-based knowledge translation platforms. TRIAL REGISTRATION NUMBER: NCT03239639; Pre-results.

Older patient engagement in advance care planning in Canadian primary care practices: Results of a multisite survey.

OBJECTIVE: To assess primary care patients' engagement in advance care planning (ACP) and predictors of engagement. DESIGN: Cross-sectional survey using a revised version of a validated questionnaire. SETTING: Alberta, Ontario, and British Columbia. PARTICIPANTS: Convenience sample of 20 family practices that provided a consecutive sample of 810 patients aged 50 years and older. MAIN OUTCOME MEASURES: Engagement in ACP activities, and sociodemographic and health-related predictors of having engaged in ACP activities. RESULTS: Patients had a mean age of 66 years (55.6% women). Two-thirds of patients (68.5%; 555) had thought about the kinds of medical treatments they would want or not want if they were sick and in hospital, 52.8% (n = 428) had talked with someone about what they would want, 32.0% (n = 259) had written down their wishes, 50.4% (n = 408) had named someone to be their substitute decision maker, and 23.0% (n = 186) had engaged in all 4 key ACP activities. Of those patients who had talked to someone about medical treatments wanted or not, 17.5% (n = 75) had talked to their family doctors. Age (adjusted odds ratio per 10-year category of 1.55; 95% CI 1.26 to 1.90; P < .001) was significantly associated with having engaged in all ACP activities. CONCLUSION: Many patients have engaged in some ACP activities, but few have discussed ACP with their family physicians. Strategies should be implemented in primary care to reduce the barriers to discussing ACP.

Barriers to and enablers of advance care planning with patients in primary care: Survey of health care providers.

OBJECTIVE: To identify barriers to and enablers of advance care planning (ACP) perceived by physicians and other health professionals in primary care. DESIGN: Cross-sectional, self-administered survey. SETTING: Ontario, Alberta, and British Columbia. PARTICIPANTS: Family physicians (n = 117) and other health professionals (n = 64) in primary care. MAIN OUTCOME MEASURES: Perceived barriers relating to the clinician, characteristics of patients, and system factors, rated on a 7-point scale from 0 (not at all) to 6 (an extreme amount), and enablers reported using an open-ended question. RESULTS: Between November 2014 and June 2015, questionnaires were returned by 72.2% (117 of 162) of family physicians and 68.8% (64 of 93) of the other health professionals. Physicians rated insufficient time, inability to electronically transfer the advance care plan across care settings, decreased interaction with patients near the end of life owing to transfer of care, and patients' difficulty understanding limitations and complications of treatment options as the highest barriers. Other health professionals additionally identified their own lack of knowledge and difficulty accessing the physician as barriers. Themes identified as enablers included greater public engagement, clinician attitudes, creating capacity for clinicians, integrating ACP into practice, and system and policy supports. CONCLUSION: In primary care, there are barriers to engaging patients in ACP at the patient, provider, and system levels that could potentially be addressed through the informed development of multifaceted interventions.

A survey of Canadian cancer patients' perspectives on the characteristics and treatment of breakthrough pain.

OBJECTIVE: Breakthrough pain is defined as a transient exacerbation of pain that occurs spontaneously or in response to a trigger despite stable and controlled background pain. The purpose of this study was to explore Canadian patients' awareness of and experience with breakthrough pain in cancer (BTPc). METHODS: Four Canadian cancer centers participated in a non-interventional survey recruiting cancer patients who experienced breakthrough pain. These patients were asked about their pain, its impact on functioning, current management and interest in new treatments of BTPc. RESULTS: Ninety-four Canadian cancer patients participated in this study, with 96% stating that cancer pain impacted their daily living with over half unable to go to work or shopping. Fifty percent of patients said that an episode of BTPc lasted greater than 60 minutes, with the pain score being on average 7.8/10, impacting normal work (7.2/10) and general activity (7.1/10). Only 35% of patients were very satisfied with the speed of relief of their medications. Those who did not take their breakthrough pain medication for every episode stated that was because the pain was not always severe (37%), or they were afraid of becoming tolerant (23%) or addicted (12%). Patients stated that the most important features of a new treatment for BTPc were the ability to relieve pain completely (47%), and quickly (43%). Patients expressed willingness to try transmucosal products (80%) or nasal products (59%). CONCLUSION: Breakthrough cancer pain in Canadian cancer patients greatly impacts their daily lives. There is room for improvement in the management of BTPc, and the majority of patients would be willing to try new treatments.

Who needs a palliative care consult?: the Hamilton Chart Audit tool.

Although palliative care services are becoming increasingly prevalent in acute care hospitals only a minority of patients who die in hospital or in the community have seen palliative care teams. There are large numbers of patients who might benefit from palliative care who are not receiving it. That said, identification of patients who are eligible for these services, and of those who would most benefit is problematic. Limitations in our ability to accurately predict prognosis as well as lack of universal agreement as to what constitutes a terminal illness, or "end of life" are important considerations. Another significant challenge faced by our health care systems is whether or not all "end-of-life" patients require specialized care by trained palliative care providers. Even if this were the ideal model of care, this would be unfeasible given the relatively small number of trained providers compared to the aging and dying population. Therefore it is critical that health care systems begin to standardize their approach to the identification of patients who are most in need of, and/or most likely to benefit from interventions by interdisciplinary palliative care teams. Institutions that are planning to develop new services, or expand their current services will require some method/tool to assess specific population needs at their site. The Hamilton Chart Audit (H-CAT) was developed at our institution to help identify potential palliative care needs of patients and their families. We report on development of the tool and use of the tool for a retrospective audit of 222 patients who died at our institution.