Family involvement in treatment decision making for older patients with cancer

Treatment decisions for older cancer patients can be complex due to comorbidities, varying levels of functional ability, and the significant impact that cancer treatments may have on quality of life and life expectancy. In this context, shared decision-making (SDM) is recommended to ensure that treatment plans align with patient’s values and preferences. However, it might be challenging to include older patients in SDM due to cognitive and sensory decline or a preference for more paternalistic guidance, making family involvement a vital source of support. Additionally, as healthcare systems shift toward patient- and family-centered care amidst rising costs and workforce shortages, families are expected to take on a greater role as informal caregivers. This added responsibility can place a significant burden on family members of older patients with cancer. Despite widespread acknowledgment of their essential caregiver role, there remains limited understanding of how family members are involved during treatment discussions and decision-making processes.

This thesis aimed to provide a deeper understanding of family involvement in treatment decision-making processes for older cancer patients. The focus was on the roles that healthcare professionals, patients, and family members played in triadic decision-making and how their collective contributions, shaped by family dynamics, impacted the process.

Chapter 2 explores the results of a scoping review conducted to examine the factors influencing family involvement in treatment decision-making for older cancer patients. A comprehensive literature search into four databases resulted in 27 relevant studies: 16 quantitative, nine qualitative, and two mixed-method studies. The analysis identified five key categories of factors that influence family involvement: 1) patient characteristics, 2) family member characteristics, 3) family system characteristics, 4) physician’s role and 5) cultural influences. These factors impact the extent of family control in decision-making; treatment choices; and how patients and family members experience the treatment decision processes which is related to decisional agreement, levels of stress and coping strategies for both patients and family members.
Patient characteristics: Family involvement in the decision making process is related to patient characteristics such as socio-demographic status, health status, cognitive abilities and psychological characteristics. Older, female patients and those with partners are more likely to prefer shared decision-making with family, while those with higher education and income often exhibit more dominance in treatment decisions. Patients in advanced cancer stages or with cognitive decline experience more family control. Those with healthy emotional functioning view family as a source of coping support.
Family member characteristics: Family involvement in decision-making is influenced family member’s characteristics being the caregiver's role, relationship with the patient, and various socio-demographic and psychological factors. Primary caregivers, especially those dedicating many hours, are more involved, and there is higher decisional agreement with partners than with adult children. However, family members experiencing depressive feelings or difficulty accepting the patient’s condition more often report family disagreements, lower confidence in caregiving decisions, and a stronger preference for life-prolonging treatments.
Family system characteristics: Communication patterns, support levels, interdependence, and past conflicts, shape how family members are involved in decision-making. Open discussions about treatment options can help patients cope, and higher levels of support increase family involvement; however, some patients avoid burdening their families, while some family members try to protect the patient. Families with a history of conflict often show higher levels of decisional agreement.
Physician’s role: Family involvement in decision-making increases when physicians actively engage family members and encourage discussions about treatment options. This approach enhances the decision-making experience for both patients and families, highlighting the need to support family members as they adapt to their evolving role, particularly in end-of-life care for older cancer patients.
Cultural influences: Family involvement in decision-making for older cancer patients varies by cultural orientation, with collectivist societies viewing illness as a family matter. Differences also exist within countries, influenced by ethnicity, language, and urban or rural settings.
The review highlights the complex interplay of these factors, rooted primarily in family system dynamics. It underscores the need for developing evidence-based strategies to better support family involvement in treatment decision-making for older cancer patients, as part of a comprehensive approach to person-centered care.

The study presented in Chapter 3 aimed to explore how surgeons and nurses perceive the involvement of adult children in treatment decisions for older cancer patients and to identify practical strategies for fostering positive family participation in clinical settings. Semi-structured interviews were conducted with 13 oncology surgeons and 13 nurses from both university and general hospitals, with data analyzed using qualitative content analysis based on thematic analysis.
The findings indicated that the involvement of adult children in decision-making tends to increase as patients and their partners become more frail. While this involvement can support more informed decisions, it also presents challenges. Surgeons and nurses recognized the proactive role of adult children, noting that they are often more willing than partners to ask questions and provide information about the patient’s health. Adult children help facilitate discussions by considering aspects of a patient's life beyond the medical perspective. However, challenges arise when patients withhold information in front of their children, when adult children dominate conversations, or when they advocate for life-prolonging treatments that differ from the patient’s preferences.
Health professionals identified six strategies to promote positive family involvement in decision-making: “focus on the patient,” “acknowledge different perspectives,” “involve adult children,” “get to know the family system,” “check that the patient and family members understand the information,” and “stimulate communication and deliberation with adult children.”
This study underscores the significance of family involvement in shared decision-making and provides actionable strategies for health professionals to enhance family participation in the treatment of older cancer patients.

Chapter 4 presents an observational study aimed at investigating the involvement of family members, patients, and physicians in triadic decision-making processes within geriatric oncology practice. The Observer Patient Involvement Scale for Multiple Chronic Conditions (OPTIONMCC) was chosen to measure SDM behaviour based on the SDM model for older patients with Multiple Chronical Conditions Within the OPTIONMCC, physicians' behaviour was assessed using a Likert scale ranging from 0 (not observed) to 4 (executed to a high standard), while the behaviours of patients and family members were scored on a scale from 0 (no or minimum participation) to 2 (active participation, including answering and asking questions).
Data from 25 consultations involving 10 physicians, 25 older patients, and 30 family members revealed that patients participated more actively in shared decision-making (SDM) than family members (mean scores 0.96 vs 0.61). Physicians demonstrated low to moderate SDM skills (mean score 1.81), and higher physician scores correlated with greater participation from both patients and family members. The level of family involvement in the SDM process varied greatly, with some family members being completely uninvolved while others were highly engaged. Through qualitative analysis of the consultation transcripts, it was found that family participation can be characterized by several key factors, including emphasizing the patient's values and goals of care, asking questions about various treatment options, offering assistance in the decision-making process, and providing clarification and organization of the overall care process. Although physicians were generally responsive to family input, they rarely actively involved them in the SDM process.
The findings suggest a need for strategies to enhance family involvement in SDM models for older cancer patients, as well as additional training for healthcare professionals in managing family dynamics.

In Chapter 5, a quantitative observational study examines the associations between physicians' shared decision-making (SDM) behavior and the participation of patients and family members in decision-making during medical consultations with older patientsUsing an observational design, 95 recorded consultations involving patients over 65, their family members, and medical specialists in a Dutch hospital were analyzed. The OPTIONMCC tool was used to evaluate physicians' SDM behavior and the involvement levels of patients and family members. Results showed a strong positive correlation between physicians' SDM behavior and participation from both patients and family members (0.68 and 0.64, respectively, p<.01). Family members were more actively involved in SDM for patients aged 80 and older. Despite the significant differences in the level of family involvement, we did not find significant differences in the physicians behaviour or the patients’ level of involvement in SDM.
The findings suggest that physicians play a key role in facilitating SDM, alongside proactive contributions from both patients and family members. While this study does not establish causality, it provides insights into the dynamics of triadic SDM and offers suggestions for refining the OPTIONMCC. Further research is recommended to explore the mutual influences of participants in triadic SDM.

Chapter 6 presents a qualitative interview study exploring the experiences and perspectives of family members involved in decision-making for older cancer patients in geriatric oncology, with a focus on how their involvement affects roles and family dynamics. In-depth interviews were conducted with 16 family members of 11 cancer patients aged 70 and older in the Netherlands. Thematic analysis was used to analyze the data. Four key themes emerged from the study. The first theme, "Roles," revealed that family members often provide practical and informational support and sometimes act as advocates for the patient. The second theme, "Family Values and Beliefs," highlighted the importance of unconditional and reciprocal support within families, emphasizing the core value of caring for one another. The third theme, "Family Dynamics," included managing tasks, keeping everyone informed, coping with uncertainty, and dealing with differing opinions and emotions. Finally, the theme "Dilemmas" described the challenges family members face, such as balancing their own opinions with the patient’s preferences, managing trust in medical professionals, and weighing caregiving responsibilities against personal needs. The findings provide valuable insights into the complex roles family members assume during medical consultations and decision-making. These roles are shaped by family values and dynamics, which can significantly influence decision outcomes. The study underscores the importance of healthcare professionals supporting family caregivers in navigating these challenges while respecting patient autonomy.

Chapter 7 provides a summary and discussion of the results. In current oncology practice for older patients, healthcare professionals tend to respond respectfully to family members, rather than actively engaging them in discussions. Family members, in turn, provide practical, informational and emotional support, and sometimes taking on an advocacy role for the patient, before, after and during medical consultations. Family involvement is generally seen as helpful, as it can support patient autonomy while also benefiting the family members themselves by enhancing their understanding and emotional well-being. However, this involvement can also present challenges, especially when conflicting views or family dynamics complicate the process and there is a risk of caregiver burden. Healthcare professionals have the potential to influence deliberation processes between family members and enhance informed decision-making by using family-inclusive strategies in SDM processes, optimizing triadic decision-making dynamics. Achieving this requires a paradigm shift, the education of professionals, and supporting both patients and family members in their roles, while fostering open conversations and understanding family dynamics.