Experiences and needs of patients with incurable cancer regarding advance care planning:results from a national cross-sectional survey

Introduction: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. Methods: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. Results: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1–10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1–10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. Conclusion: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services

The role of hospital nurses in shared decision-making about life-prolonging treatment: A qualitative interview study

Aims: To examine hospital nurses’ perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution. Design: A qualitative interview study. Methods: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers. Results: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses’ descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients. Conclusion: Nurses described behaviour that reflected a supporting role in shared decision-making about patients’ life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making. Impact: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses’ involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role

The role of hospital nurses in shared decision-making about life-prolonging treatment: A qualitative interview study

Aims: To examine hospital nurses’ perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution. Design: A qualitative interview study. Methods: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers. Results: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses’ descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients. Conclusion: Nurses described behaviour that reflected a supporting role in shared decision-making about patients’ life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making. Impact: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses’ involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role

Role of GPs in shared decision making with patients about palliative cancer treatment: a qualitative study in the Netherlands

BACKGROUND: GPs are well placed to enhance shared decision making (SDM) about treatment for patients with advanced cancer. However, to date, little is known about GPs' views about their contribution to SDM. AIM: To explore GPs' perspectives on their role in SDM about palliative cancer treatment and the requirements they report to fulfil this role. DESIGN AND SETTING: Qualitative interview study among Dutch GPs. METHOD: GPs were sampled purposefully and conveniently. In-depth, semi-structured interviews were conducted, recorded, and transcribed verbatim. Transcripts were analysed by thematic analysis. RESULTS: Fifteen GPs took part in this study. Most of them reported practices that potentially support SDM: checking the quality of a decision, complementing SDM, and enabling SDM. Even though most of the GPs believed that decision making about systemic cancer treatment is primarily the oncologist's responsibility, they did recognise their added value in the SDM process because of their gatekeeper position, the additional opportunity they offer patients to discuss treatment decisions, and their knowledge and experience as primary healthcare providers at the end of life. Requirements for them to support the SDM process were described as: good collaboration with oncologists; sufficient information about the disease and its treatment; time to engage in conversations about treatment; a trusting relationship with patients; and patient-centred communication. CONCLUSION: GPs may support SDM by checking the quality of a decision and by complementing and enabling the SDM process to reach high-quality decisions. This conceptualisation of the GP's supporting role in SDM may help us to understand how SDM is carried out through interprofessional collaboration and provide tools for how to adopt a role in the interprofessional SDM process

Experiences and perspectives of patients with advanced cancer regarding work resumption and work retention: a qualitative interview study

Purpose: Being able to work improves the quality of life of patients with cancer. Much is known about the return to work process of cancer survivors. Yet, studies focusing on the experiences of patients with advanced cancer who want to return to work or stay employed are scarce. Therefore, we aimed to explore the perceptions of patients with advanced cancer regarding work resumption and work retention and the barriers and facilitators they may experience. Methods: Semi-structured interviews were conducted. Patients were included if they: (1) were diagnosed with advanced cancer, (2) worked in paid employment at time of diagnosis, and (3) were currently back in paid employment or had the intention to return to paid employment. Participants were recruited through clinicians and patient organizations. Interviews were transcribed and thematically analysed using ATLAS.ti. Results: Fifteen patients (87% female, mean age 52 (SD 4; range 41–64)) were individually interviewed. Four main themes emerged from the data: (1) holding on to normalcy, (2) high understanding and divergent expectations, (3) social discomfort calls for patient-initiated alignment, and (4) laws and regulations require patient empowerment. Conclusion: Paid employment can contribute to the quality of life of patients with advanced cancer. The findings of this study might correct erroneous preconceptions about the work ability and work intention of patients with advanced cancer. Tools already developed for employers to support reintegration of patients with cancer should be further explored and translated to patients with advanced cancer

A blended learning for general practitioners and nurses on skills to support shared decision-making with patients about palliative cancer treatment: A one-group pre-posttest study

Objective: To evaluate a newly developed blended learning programme for general practitioners (GPs) and nurses in supporting shared decision making (SDM) about palliative cancer treatment in a simulated setting. Methods: In a pre-posttest study, healthcare professionals (HCPs) participated in the blended learning (i.e. e-learning and (online) training session). HCPs filled out surveys (T0 (baseline), T1 (after e-learning) and T2 (after full blended learning)) and engaged in simulated consultations at T0 and T2. The primary outcome was observed SDM support (Triple-S; DSAT-10 for validation). Secondary outcomes included satisfaction, knowledge about and attitude towards SDM support. Repeated measures General Linear Models were conducted. Results: 33 HCPs (17 GPs and 16 nurses) participated. SDM support significantly improved after training (Triple-S; medium effect). Observers’ overall rating of SDM support (medium effect) as well as HCPs’ knowledge (large effect) and beliefs about their capabilities (medium effect) improved after training. There was no difference in decision support skills (DSAT-10), HCPs’ other clinical behavioural intentions and satisfaction. HCPs evaluated the training positively. Conclusion: Blended learning for HCPs on supporting SDM in palliative cancer care improved their skills, knowledge and confidence in simulated consultations. Practice implications: These first findings are promising for evaluating interprofessional SDM in clinical practice