Patients with a hematologic malignancy increasingly prefer to be actively involved in treatment decision-making. Shared decision-making (SDM), a process that supports decision-making in preference-sensitive decisions, fits well with this need. A decision is preference sensitive when well-informed patients considerably differ in their trade-offs between the pros and cons of one option, or if more equal treatment options are available, including no treatment. SDM involves several steps: the first is choice talk, where the professional informs the patient that a decision needs to be made between the various relevant options and that the patient's opinion is important. The second is option talk, where the professional explains the options and their pros and cons. In the third step, preference talk, the professional and the patient discuss the patient's preferences. The professional supports the patient in deliberation. The final step is decision talk, where the professional and patient discuss the patient's decisional role preference, make or defer the decision and discuss possible follow-up.
Background: Many older patients with cancer have their family members, often their adult children, involved in a process of treatment decision making. Despite the growing awareness that family members can facilitate a process of shared decision making, strategies for involving family members are scarce. Furthermore, literature about shared decision making pays little attention on family relations or to the impact that these relations have on the decision process. The purpose of this study was to explore how surgeons and nurses perceive the involvement of adult children of older patients with cancer in treatment decision-making. Subsequently, it identified strategies to ensure family involvement in the decision-making process, used in clinical practice. Methods: Semi-structured interviews were conducted with 13 surgeons and 13 nurses working in an university or general hospital. Qualitative content analysis was conducted according to the steps of thematic analysis. Results: Both nurses and surgeons indicated that adult children's involvement in decision-making about treatment increases when patients become frail. They mentioned several characteristics of adult children's behaviour during the decision-making process. Most of these characteristics are beneficial, but they also can be challenging. The distinct nature of adult children's involvement can help older patients with cancer reach better-informed treatment decisions. Health professionals reported six strategies to support positive family involvement in decision-making about treatment. Conclusion: Adult children may facilitate a process of shared decision-making and help patients reach well-informed treatment decisions. Health professionals' strategies deliberately support positive family involvement.
Many older patients with cancer depend on their family members for care and support and involve their family members in treatment decision-making in different stages of the cancer trajectory. Although family involvement is advocated in person-centered care, little is known about family involvement in decision-making specifically for older patients, and evidence-based strategies are scarce. The aim of this scoping review is to provide deeper understanding of factors influencing family involvement in treatment decision-making for older patients with cancer. Four databases were searched for quantitative-, qualitative- and mixed-method empirical studies describing factors influencing family involvement in treatment decision-making for older patients with cancer: PubMed, EMBASE, CINAHL and PsycINFO. Three independent researchers reviewed the papers for eligibility and quality and contributed to the data extraction and analysis. Twenty-seven papers were included, sixteen quantitative studies, nine qualitative studies and two mixed-method studies. Five categories of factors influencing family involvement emerged: 1) patient characteristics, 2) family member characteristics, 3) family system characteristics, 4) physician’s role and 5) cultural influences. These factors affect the level of family control in decision-making, treatment choice, decision agreement, and levels of stress and coping strategies of patients and family members. This review reveals a complex interplay of factors influencing family involvement in treatment decision-making for older patients with cancer that is rooted in characteristics of the family system. The findings underscore the need for development and implementation of evidence-based strategies for family involvement in treatment decision-making as part of patient-centered care for older patients with cancer.