The challenges of ethical deliberation in palliative care settings: A descriptive study.

OBJECTIVE: Inadequate deliberation processes about ethical problems occurring in palliative care settings may negatively impact both patients and healthcare professionals. Better knowledge of the palliative care professionals' practices regarding such processes could help identify specific education needs to improve the quality of palliative care in the context of complex ethical situations. Therefore, this descriptive study aimed to (1) examine ethical deliberation processes in interprofessional teams in five palliative care settings; (2) identify organizational factors that constrain such processes; and (3) based on this knowledge, identify priority education needs for future and current palliative care professionals. METHOD: The study involved three data collection activities: (1) direct observation of simulated interprofessional ethical deliberations in various palliative care settings; (2) individual semi-structured interviews; and (3) deliberative dialogues. RESULTS: Thirty-six healthcare professionals took part in the simulated ethical deliberations and in the deliberative dialogue activities, and 13 were met in an individual interview. The study results revealed suboptimal interprofessional collaboration and ethical deliberation competencies, particularly regarding awareness of the ethical issue under consideration, clarification of conflicting values, reasonable decision making, and implementation planning. Participants also reported facing serious organizational constraints that challenged ethical deliberation processes. SIGNIFICANCE OF RESULTS: This study confirmed the need for professional education in interprofessional collaboration and ethical deliberation so that palliative care professionals can adequately face current and future ethical challenges. It also enabled the identification of educational priorities in this regard. Future research should focus on identifying promising educational activities, assessing their effectiveness, and measuring their impact on patient and family experience and the quality of palliative care.

Distress experienced by lung cancer patients and their family caregivers in the first year of their cancer journey.

OBJECTIVES: Diagnosis of cancer is emotionally threatening not only for patients but also for their family caregivers (FC) who witness and share much of the illness experience. This study compares distress experienced by lung cancer patients and their FC during the year following the diagnosis. METHODS: A prospective cohort study of 206 patients recently diagnosed with inoperable lung cancer (participation rate 79.5%) and 131 FC (participation rate 63.6%) was conducted in an ambulatory oncology clinic in Quebec City (Canada). They completed validated questionnaires regarding their personal and psychological characteristics (Hospital and Anxiety Depression Scale-HADS), in the first months after the diagnosis of lung cancer and after 6 and 12 months. Univariate, bivariate, and linear mixed models were conducted to compare patient and FC distress. RESULTS: At baseline, 7.8% of patients reported distress (HADS total score >15) and their mean distress score was 7.0 ± 4.9 (range 0-42). In contrast, 33.6% of FC presented significant distress and their mean distress score was 12.0 ± 7.2 (P < 0.0001). Proportions of patients and FC with distress remained relatively stable at 6 and 12 months, and at every time point, FC reported higher levels of distress compared to their relative with cancer (P < 0.0001). Comparable trends were found when looking at the mean scores of distress, anxiety, and depression throughout the study. SIGNIFICANCE OF RESULTS: Being diagnosed with lung cancer and going through its different phases seems to affect more FC than patients. The psychological impact of such diagnosis appears early after the diagnosis and does not significantly change over time. These findings reinforce the importance for oncology teams, to include FC in their systematic distress screening program, in order to help them cope with their own feelings and be able to play their role in patient support and care throughout the cancer journey.

Continuity of Cancer Care and Collaboration Between Family Physicians and Oncologists: Results of a Randomized Clinical Trial.

PURPOSE: Collaboration between family physicians (FPs) and oncologists can be challenging. We present the results of a randomized clinical trial of an intervention designed to improve continuity of care and interprofessional collaboration, as perceived by patients with lung cancer and their FPs. METHODS: The intervention included (1) supplying FPs with standardized summaries related to each patient, (2) recommending that patients see their FP after receiving the cancer diagnosis, (3) supplying the oncology team with patient information resulting from FP visits, and (4) providing patients with priority access to FPs as needed. A total of 206 patients with newly diagnosed lung cancer were randomly assigned to the intervention (n = 104) or control group (n = 102), and 86.4% of involved FPs participated. Perceptions of continuity of care and interprofessional collaboration were assessed every 3 months for patients and at baseline and at the end of the study for FPs. Patient distress and health service utilization were also assessed. RESULTS: Patients and FPs in the intervention group perceived better interprofessional collaboration (patients: P <.0001; FPs: P = .0006) than those in the control group. Patients reported better informational continuity (P = .001) and management continuity (P = .05) compared to the control group, but no differences were found for FPs (information: P = .22; management: P = .13). No effect was found with regard to patient distress or health service utilization. CONCLUSIONS: This intervention improved patient and FP perception of interprofessional collaboration, but its effectiveness on continuity of care was less clear for FPs than for patients. Additional strategies should be considered to sustainably improve continuity of care and interprofessional collaboration.

Goals of Care Conversations at the End-of-Life: Perceived Impact of an Interprofessional Training Session on Professional Practices.

An interprofessional training session for health professionals was designed to optimize practice regarding goals of care at the end-of-life with patients and their families. The training session supported implementation of a new unified format, used in all healthcare establishments in Quebec since 2018, to document treatment preferences of persons with serious illness or advanced frailty. Three months after the training, participants revealed three main changes in their professional practices: (1) better use of the unified form as a communication tool to discuss end-of-life care with patients; (2) improved interprofessional practices in complex goals of care conversations situations through better affirmation of their role along with recognition of other professionals' roles in this decision-making process; and (3) assumption improved recognition of advocacy, support and enabler roles with patients and families during goals of care conversations. Change facilitators are related to the participants' personal characteristics, whereas the change constraints identified by participants mainly concern organizational factors. This implies potential recommendations to optimize patients' ability to mobilize in order to make informed decisions about their end-of-life care.

A randomized clinical trial assessing a pragmatic intervention to improve supportive care for family caregivers of patients with lung cancer.

OBJECTIVE: Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care. METHOD: A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed. RESULTS: A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net. SIGNIFICANCE OF RESULTS: Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.

The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure.

OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children]. METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings. RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items. SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS.

OBJECTIVE: Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument. METHOD: In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings. RESULTS: Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory. SIGNIFICANCE OF RESULTS: Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.

Improving interprofessional collaboration: The effect of training in nonviolent communication.

This article examines the effects of nonviolent communication (NVC) training on the interprofessional collaboration (IPC) of two health and social services sector care teams. The study was conducted in 2013 with two interprofessional teams (N = 9) using a mixed method research design to measure the effects of the training. Individual IPC competency was measured using the Team Observed Structured Clinical Encounter tool, and group competency using the Observed Interprofessional Collaboration tool. A focus group was held to collect participant perceptions of what they learned in the training. Results revealed improvements in individual competency in client/family-centered collaboration and role clarification. Improvements in group competency were also found with respect to teams' ability to develop a shared plan of action. Data suggests that participants accepted and adopted training content. After the training, they appeared better able to identify the effects of spontaneous communication, more understanding of the mechanisms of empathy, and in a better position to foster collective leadership.

Palliative care costs in Canada: A descriptive comparison of studies of urban and rural patients near end of life.

BACKGROUND: Significant gaps in the evidence base on costs in rural communities in Canada and elsewhere are reported in the literature, particularly regarding costs to families. However, it remains unclear whether the costs related to all resources used by palliative care patients in rural areas differ to those resources used in urban areas. AIM: The study aimed to compare both the costs that occurred over 6 months of participation in a palliative care program and the sharing of these costs in rural areas compared with those in urban areas. DESIGN: Data were drawn from two prior studies performed in Canada, employing a longitudinal, prospective design with repeated measures. SETTING/PARTICIPANTS: The urban sample consisted of 125 patients and 127 informal caregivers. The rural sample consisted of 80 patients and 84 informal caregivers. Most patients in both samples had advanced cancer. RESULTS: The mean total cost per patient was CAD 26,652 in urban areas, while it was CAD 31,018 in rural areas. The family assumed 20.8% and 21.9% of costs in the rural and urban areas, respectively. The rural families faced more costs related to prescription medication, out-of-pocket costs, and transportation while the urban families faced more costs related to formal home care. CONCLUSION: Despite the fact that rural and urban families assumed a similar portion of costs, the distribution of these costs was somewhat different. Future studies would be needed to gain a better understanding of the dynamics of costs incurred by families taking care of a loved one at the end of life and the determinants of these costs in urban versus rural areas.

The use of palliative sedation: A comparison of attitudes of French-speaking physicians from Quebec and Switzerland.

OBJECTIVE: Previous literature has suggested that laws and regulations may impact the use of palliative sedation. Our present study compares the attitudes of French-speaking physicians practicing in the Quebec and Swiss environments, where different laws are in place regarding physician-assisted suicide. METHOD: Data were drawn from two prior studies, one by Blondeau and colleagues and another by Beauverd and coworkers, employing the same two-by-two experimental design with length of prognosis and type of suffering as independent variables. Both the effect of these variables and the effect of their interaction on Swiss and Quebec physicians' attitudes toward sedation were compared. The written comments of respondents were submitted to a qualitative content analysis and summarized in a comparative perspective. RESULTS: The analysis of variance showed that only the type of suffering had an effect on physicians' attitudes toward sedation. The results of the Wilcoxon test indicated that the attitudes of physicians from Quebec and Switzerland tended to be different for two vignettes: long-term prognosis with existential suffering (p = 0.0577) and short-term prognosis with physical suffering (p = 0.0914). In both cases, the Swiss physicians were less prone to palliative sedation. SIGNIFICANCE OF RESULTS: The attitudes of physicians from Quebec and Switzerland toward palliative sedation, particularly regarding prognosis and type of suffering, seem similar. However, the results suggest that physicians from Quebec could be slightly more open to palliative sedation, even though most were not in favor of this practice as an answer to end-of-life existential suffering.

Building an interfaculty interprofessional education curriculum: what can we learn from the Université Laval experience?

Interprofessional education (IPE) is increasingly recognized as a means to improve practice in health and social care. However, to secure interprofessional learning, it is important to create occasions in prelicensure health and social services curriculum so that students can learn with, from and about each other. This paper presents the process behind the development and implementation of an IPE curriculum in 10 health and social sciences programs by a team of professors from the faculties of medicine, nursing sciences and social sciences at Université Laval in the province of Québec, Canada. The pedagogical approach, description of primary objectives and issues related to its implementation in the curriculum programs are also described and discussed.

Perceived communication between physicians and breast cancer patients as a predicting factor of patients' health-related quality of life: a longitudinal analysis.

OBJECTIVE: Communication between cancer patients and healthcare providers is recognized as an important aspect of these patients' health-related quality of life (HRQOL). Nevertheless, no study has examined whether perceived communication between physicians and breast cancer patients is a determining factor in their HRQOL along the disease's trajectory. This longitudinal study aimed to ascertain whether such communication influenced the HRQOL of such women at three points in time. METHODS: The sample consisted of 120 French-speaking women with stage I or II breast cancer aged 18 years or over (mean = 55 years) who underwent a lumpectomy with adjuvant treatment. The women filled out questionnaires at three different times: around the time of diagnosis, halfway through radiotherapy and at follow-up. Either at the hospital or at home, they completed demographic and medical data questionnaires, the Medical Outcomes Study-Social Support Survey, an HRQOL questionnaire (EORTC QLQ-C30/BR23) and the Medical Communication Competence Scale. RESULTS: Generalized estimated equations analyses indicated that the women's perceptions of their own communication skills towards physicians had a greater impact on their HRQOL than the women's perception of physicians' communication skills. The women had better global health and better role, emotional, cognitive and sexual functioning as well as fewer side effects and symptoms during radiotherapy and at follow-up when they perceived themselves as competent communicators at diagnosis and during radiotherapy. CONCLUSIONS: The results underscore the importance for breast cancer patients of being proactive in information seeking and in the socio-emotional aspect of their relationship with physicians to enhance their HRQOL.

Distribution and sharing of palliative care costs in rural areas of Canada.

Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time.

The Interprofessional Psychosocial Oncology Distance Education (IPODE) project: perceived outcomes of an approach to healthcare professional education.

The Interprofessional Psychosocial Oncology Distance Education (IPODE) project was designed as an approach to the problems of feasibility and accessibility in specialty health professional education, in this case, psychosocial oncology (PSO). In this article, we report the evaluation findings from the first three years of the project in relation to one IPODE course, which was offered as a graduate level university elective in nine Canadian universities and as a continuing education (CE) option to health professionals between January 2008 and May 2010. The evaluation included a pre and post questionnaire that explored how an interprofessional (IP), web-based, PSO course influenced participants' knowledge, attitudes and beliefs about IP, person-centered PSO care. It also examined what attributes of a web-based platform were most effective in delivering an IP PSO course. The study yielded two key findings. First, web-based learning in a pan-Canadian and cross-university collaboration is a viable alternative to providing specialty education and significantly improves knowledge, attitudes and beliefs about IP, person-centered PSO care. Second, a web-based platform with real-time seminars, discussion boards and multiple audio visual resources that privilege first person illness narratives were important elements in expanding knowledge and shifting attitudes about IP practice and person-centered care in regards to PSO. In their evaluation, course participants highlighted a variety of ways in which the course expanded their vision about what constitutes an IP team and increased their confidence in interacting with healthcare professionals from professions other than their own.

Healthcare providers' intentions to engage in an interprofessional approach to shared decision-making in home care programs: a mixed methods study.

In an interprofessional approach to shared decision-making (IP-SDM), an interprofessional team collaborates in identifying best options and helps patients determine their preferences, enabling them to take more control over the treatment plan. However, little is known about fostering IP-SDM in Canada's healthcare system. Therefore, we sought to evaluate health professionals' intentions to engage in IP-SDM in home care and explore the factors associated with this intention. A total of 272 eligible home care providers completed a questionnaire based on the theory of planned behavior. Eight managers and one healthcare team caring for the frail elderly were interviewed about possible barriers and facilitators. Analysis involved descriptive statistics and multivariate analysis of quantitative data and content analysis of qualitative data. On a scale of - 3 (strongly disagree) to +3 (strongly agree), the mean intention to engage in IP-SDM was positive (1.42 ± 1.39). The intention was influenced by the following theory-based determinants (R(2) = 57%; p ≤ 0.002), i.e. cognitive attitude (p < 0.001) subjective norm (p < 0.0001) and perceived behavioral control (p < 0.0001), with variations depending on the type of provider. Barriers included lack of time, poor team cohesion and high staff turnover. Facilitators included team cohesion and shared tools. Future programs implementing IP-SDM could address these barriers and facilitators.

Psychological distress among adolescents living with a parent with advanced cancer.

The objective of this exploratory study was to evaluate the impact of advanced parental cancer on adolescents' psychological status. A sample of 28 adolescents, having a parent with advanced cancer, was recruited and compared with a sample from the general population (N = 2,346). Late adolescents (age 15 to 18) experienced significantly more psychological distress than early adolescents (age 12 to 14). Moreover, late adolescents experienced significantly higher psychological distress than the general population for the same age group, which was not the case for early adolescents. Implications for adolescents living in families touched by advanced cancer are discussed.

A conceptual framework for interprofessional shared decision making in home care: protocol for a feasibility study.

BACKGROUND: Shared decision making (SDM) is fundamental to informed consent and client-centered care. So far, SDM frameworks have been limited to the client-physician dyad, even though care is increasingly delivered by interprofessional (IP) teams. IP collaboration is especially essential in home care, one of health care's most rapidly growing areas. This study will assess whether it is possible to practice SDM in IP home care. METHODS/DESIGN: We will use a qualitative case study and a quantitative survey to capture the macro, meso and micro levels of stakeholders in home care. The case study will follow the knowledge-to-action process framework to evaluate the work of an IP home care team at a Quebec City health center. Sources of data will include one-on-one interviews with patients, family caregivers or surrogates and significant others, and administrators; a focus group of home care health professionals; organizational documents; and government policies and standards. The interview guide for the interviews and the focus group will explore current practices and clinical problems addressed in home care; factors that could influence the implementation of the proposed IP approach to SDM; the face and content validity of the approach; and interventions to facilitate the implementation and evaluation of the approach. The survey will ask 300 health professionals working in home care at the health center to complete a questionnaire based on the Theory of Planned Behaviour that measures their intentions to engage in an IP approach to SDM. We will use our analysis of the individual interviews, the focus group and the survey to elaborate a toolkit for implementing an IP approach to SDM in home care. Finally, we will conduct a pilot study in Alberta to assess the transferability of our findings. DISCUSSION: We believe that developing tools to implement IP SDM in home care is essential to strengthening Canada's healthcare system and furthering patient-centered care. This study will contribute to the evaluation of IP SDM delivery models in home care. It will also generate practical, policy-oriented knowledge regarding the barriers and facilitators likely to influence the practice of IP SDM in home care.

Evaluating the economic loss of caregiving for palliative care patients.

OBJECTIVE: Our aim is to provide a unified measure of the economic burden faced by families during the palliative phase of care and to compare this measure to Statistics Canada's low-income cut-off. METHODS: Samples of palliative care patients living at home and their main informal caregivers were recruited in five Canadian urban regions. Interviews were performed every two weeks until the patient's passing, up to a maximum of six months. Participants were asked to provide details about their expenses and their absences from work that related specifically to the patient's condition. Income loss was evaluated for 192 family units. RESULTS: About 9 percent of families incurred economic losses in excess of 10 percent of their pre-study gross annual income; low-income status increased from 27 (before) to 40 (after). CONCLUSION: This is the first study to provide a unified measure of economic losses of caregiving that can be related to a publicly designated low-income threshold.

The trajectory of palliative care costs over the last 5 months of life: a Canadian longitudinal study.

OBJECTIVE: This study aimed to highlight the trajectory of palliative care costs over the last five months of life in five urban centres across Canada. SUBJECTS: The study sample was comprised of 160 terminally ill patients and their main informal caregivers. RESEARCH DESIGN: A first interview took place in the patient's home, and subsequent follow-up interviews were conducted by telephone at two week intervals until the patient's passing. MEASURES: Participants were asked to provide information on the goods and services they used related to the patients' health condition, and on informal caregiving time. RESULTS: The overall costs of care gradually increased from the fifth to the last month of the patients' life. A large part of this cost increase was attributable to inpatient care. Among outpatient care costs the largest increase was observed for home care. Informal care costs were particularly high over the last 3 months of life. CONCLUSIONS: The knowledge gained from this study would be useful to policy makers when developing policies that could help families caring for a terminally ill loved one at home.

La Belle Mort en Milieu Rural: a report of an ethnographic study of the good death for Quebec rural francophones.

An ethnographic study was undertaken in two rural areas of Quebec to conceptualize the good death. The findings reveal that a good quality of life for the dying person and his or her family and friends is essential for a good death. The resulting conceptual model emphasized four dimensions: physical, spiritual, social, and emotiona/psychological. These dimensions were determined to be similar to those discovered through a previous urban study, indicating that there may be considerable overlap between good deaths in rural and urban areas. Some findings of this Quebec French-language rural study were similar to those of an Alberta English-language rural study, indicating that rural people may have some common needs and interests with regard to the good death. As such, there could be some common elements of the good death that transcend culture or ethnicity. Chief among these is the desire of rural people to die at home or in their home communities.