Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study

Abstract

BackgroundPatients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care.ObjectiveTo examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy.MethodsFourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding.ResultsPatients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy.ConclusionTo reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.

What Is Important When Making Treatment Decisions in Metastatic Breast Cancer? A Qualitative Analysis of Decision-Making in Patients and Oncologists

“…Recognition of individual patient priorities including both treatment characteristics and contextual considerations (e.g., efficacy, toxicities, impact of daily life, responsibilities) is essential for patients to garner the needed information from support sources and exert autonomy in the decision‐making process. The desire for decision engagement observed in this study is consistent with previous quantitative and qualitative studies outside MBC showing that patients desire involvement in decisions .…”

“…Patients in this analysis desired both substantial engagement in decision‐making and consideration of their unique preferences when deciding on a treatment course. This individualistic nature of decision‐making has been previously demonstrated in breast cancer, as well as in other advanced cancers . Recognition of individual patient priorities including both treatment characteristics and contextual considerations (e.g., efficacy, toxicities, impact of daily life, responsibilities) is essential for patients to garner the needed information from support sources and exert autonomy in the decision‐making process.…”

“…Previous work by Turkman et al demonstrated that patient perception of disease aggressiveness, particularly being “triple negative,” impacted the way patients with stage III–IV breast cancer considered treatment decisions and their perception of the lack of treatment options . In another study, patients wanted an increased role in decision‐making with a progression toward more advanced disease, where prognosis was limited and quality of life became more important . Given contextual factors, such as prognosis and change over time, patient decision‐making inevitably includes multiple decisions made over the course of their lifetime .…”

“…Within this framework, decisional needs include the level of acceptable decisional conflict, knowledge and expectations, patient values, the available support and resources, and specific characteristics of the person and the decision that she is making . Previous studies in early‐stage breast cancer and other cancer types have shown that individual patients have unique perspectives in terms of what is important in making decisions . However, empirical literature is lacking specificity on important patient values and preferences to consider in decision‐making for MBC.…”

Patient characteristics and treatment considerations in pancreatic cancer: a population based study in the Netherlands

“…Results of a German qualitative interview study demonstrate that the involvement of patients in the decision-making process may even increase further during the course of their illness, due to increasing experience with the disease and treatment [28]. However, overall the involvement of patients in the decision-making process remains limited [29,30]. Some previous studies, assessing different pancreatic cancer populations (non-metastatic pancreatic cancer, stage I pancreatic adenocarcinoma and advanced pancreatic cancer), have also investigated reasons and predictors for withholding tumor targeting treatment.…”