No time for reflection: Patient experiences with treatment‐related decision‐making in advanced prostate cancer

Abstract

No time for reflection: Patient experiences with treatment-related decision-making in advanced prostate cancer Background: The rationale of the study was the predominant understanding that patient involvement in treatment-related decision-making is essential and that communication with cancer patients can affect their quality of life, satisfaction with care, and psychosocial and medical outcomes positively. Aim: This study explored how patients with advanced prostate cancer experience the communication with health professionals and their experiences of how and by whom treatment-related decisions were made. Methods: A phenomenological-hermeneutic research design was applied, and data were collected using qualitative interviews supplemented with participant observations in a urological outpatient clinic at a regional hospital in Denmark. Thirteen patients participated. Data were analysed using Ricoeur's theory of interpretation. Findings: The patients experienced the course as being routine and that decisions related to treatment were made in advance. Three themes were identified: (1) Fast track diagnosing and treatment, (2) Off course I should have this treatment, and (3) They don't ask about existential issues. Conclusion: The study concluded that patients experienced communication primarily revolved around disease-and treatment-related issues and that it was characterised as efficient and straightforward, but insufficient. The patients experienced that the doctors made treatment-related decisions without involving them.

The unique information and communication needs of men affected by prostate cancer: A qualitative study of men's experience

“…In this study, we found that patients were often given lots of information immediately after they had received bad news. However, this and other studies have found that patients' attention to and recall of information provided during bad news consultations is poor; and the emotional toll of bad news, increased levels of distress or anxiety, might be responsible for this hampered information processing (Maharaj et al, 2018;Netsey-Afedo et al, 2019;Speer et al, 2017;Tarrant et al, 2008;van Osch et al, 2014). Participants in this study found it helpful when professionals provided emotionally responsive communication, emotional support or opportunities to go back to them for clarification and further information.…”

“…There has been a growing body of qualitative research examining men's experience of and need for supportive care (Arrington, 2015;Bamidele et al, 2018;Chambers et al, 2018;Dunn et al, 2020;King et al, 2015;Kirkman et al, 2017;Netsey-Afedo et al, 2019;Paterson et al, 2015;Paterson et al, 2017;Schildmeijer et al, 2019). These studies helped to identify priority areas of unmet informational need, such as diagnostic tests (e.g., PSA), treatment options and outcomes, prognosis and adverse effects of treatment (short term and long term) and their management (Bamidele et al, 2018;Chambers et al, 2018;Dunn et al, 2020;King et al, 2015;Netsey-Afedo et al, 2019;Paterson et al, 2015;Paterson et al, 2017;Schildmeijer et al, 2019).…”

“…Barriers to meeting men's information needs were also noted, such as information undersupply or overload and communication problems men experienced with professionals (Bamidele et al, 2018;Chambers et al, 2018;Dunn et al, 2020;King et al, 2015;Kirkman et al, 2017;Netsey-Afedo et al, 2019;Paterson et al, 2015;Paterson et al, 2017;Schildmeijer et al, 2019). Moreover, studies have found that access to a specialist nurse meant the experience of supportive care was better (Dunn et al, 2020;King et al, 2015); and men used a variety of alternative information sources to meet their unmet needs (Arrington, 2015;Dunn et al, 2020;King et al, 2015;Kirkman et al, 2017;Schildmeijer et al, 2019).…”

A challenging journey: The experience of elderly patients and their close family members after major emergency abdominal surgery

“…However, several interviewees felt overlooked and ignored, as well as uninformed. Numerous studies report similar findings where patients and families experienced lack of information, respect and empathy during hospitalisation, which made them feel vulnerable and emotionally distressed (43, 47, 48). Being admitted to a caring ward and feeling well informed have been found to lead to higher patient satisfaction and even improved survival (42, 49).…”

Mobile Audio Recording Technology to Promote Informed Decision Making in Advanced Prostate Cancer

“…[24][25][26][27][28][29][30] Shared decision making is relevant because these therapies have not been compared directly, and they have different toxicity profiles. [31][32][33][34][35] Patients must weigh potential benefits and harms against personal priorities. In addition, men with mCRPC report a poor understanding of treatments, [36][37][38][39] which is exacerbated by cognitive dysfunction related to androgen-deprivation therapy.…”