Treatment decision-making in chronic diseases: What are the family members’ roles, needs and attitudes? A systematic review

Highlights

• First review to examine family members’ roles across several chronic diseases.

• Similarities and differences exist in family involvement depending on the context.

• Innovative themes: FMs’ influence (how/when) and patterns of family involvement.

• Research implication: quantitative tools need to be developed.

• Clinical implication: physicians should include FMs in treatment decision-making.

Abstract

Objective

This systematic review aims to examine the roles of family members (FMs) in treatment decision-making for adult patients without cognitive or psychiatric disorders affecting their ability to participate in decision-making.

Methodology

A comprehensive, systematic search of the Cochrane Library, PsycINFO, PubMed and ScienceDirect databases, with relevant keywords, was conducted. Two authors evaluated the eligibility of the studies independently, then cross-checked for accuracy. The quality of included studies were assessed using standardized criteria.

Results

Out of the 12.137 studies identified, 40 were included. Results highlighted the different roles and influences FMs have in the decision-making process. Moreover, several factors ranging from personal to cultural and family-related factors influence their level of involvement. Regardless of the illness, some similarities in family influence exist (e.g., social support). However, the type of family involvement varies according to the illness, the treatment choice and the patients’ culture.

Conclusion

FMs have an important role in the decision-making process. In fact, the final decision is often made by the patients after consulting their families. FMs can support both patients and medical teams, and thus facilitate the process.

Practice implications

Physicians should include FMs in treatment decision-making when the patients and their FMs wish to be included.

Introduction

In chronic and serious diseases (e.g., cancer, multiple sclerosis) multiple treatments may be available (e.g., surgery, transplantation) and thus a choice needs to be made. Historically, and for a long time, physicians were the ones who made the decisions [1]. However, with the emergence of patient-centered care in the 21st century, patients are more involved in decisions regarding their own health, especially in life-threatening illnesses [2], [3]. Moreover, patient involvement in treatment decision-making contributes to improved satisfaction with care and patient autonomy [3], [4]. This active patient involvement in treatment decisions is often referred to as shared decision-making. This concept has been defined by Charles et al. [5] as a process between patients and their physicians whereby they share information, express their treatment preferences and make a decision by mutual agreement. However, Berry [6] and Towle et al. [7] highlighted the physicians’ difficulties to reach shared treatment decisions (e.g., communication difficulties). Moreover, some physicians may be reluctant to proceed to shared decision-making because of their understanding of their professional role or their preferred decision-making process as a provider [8]. These difficulties in reaching a shared decision are experienced by both patients and physicians. Patients tend to follow the physicians’ decisions [9], [10], thereby they may increase the physicians’ burden and stress in specific situations [11]. Moreover, treatment decision-making is also a stressful time for patients [12].

Most authors only recognize two actors in the shared decision-making process, the patients and their physicians [1]. Indeed, within the scope of shared decision-making, research has mostly focused on the patients’ individual factors and/or the patient-physician relationship factors. However, Charles et al. [1] discussed briefly the potential involvement of family members (FMs) during the deliberation phase (i.e., discussion of advantages/disadvantages of each treatment option) of the shared decision-making process. Nevertheless, the authors do not mention the role FMs could have during other stages of the decision-making process, nor do they state what specific roles they can have.

However, in the last decade, scientific literature has begun to focus on the role of FMs in chronic diseases, addressing the limits of shared decision-making models focusing only on patient-physician interactions. FMs often accompany patients during their consultations [13] and are involved in discussions regarding treatment choices [14]. Indeed, the majority of patients, FMs and physicians prefer the families to be involved in treatment decision-making, to some extent [15], [16], [17]. However, family involvement is a more recent development compared to dyadic (patient-physician) approaches in which the FMs’ role is rarely acknowledged. To date, two systematic reviews and a meta-ethnography [9], [10], [18] have been conducted on family involvement in treatment decision-making. They highlight the different roles FMs and friends take on during this process, as well as their experiences. However, these studies were conducted on specific diseases (i.e., cancer, chronic kidney disease) or specific circumstances (e.g., FMs’ roles in medical consultations). Little is known about chronic illnesses in general and who/when FMs take part in treatment decision-making.

Therefore, the present systematic review aims to explore the roles of FMs in treatment decision-making when patients are adults and are able to partake in the discussions regarding their treatments. By identifying precisely how and when FMs can help in treatment decision-making, we hope to highlight the importance of FMs in this process and the similarities and differences in family involvement, depending on the context (i.e., the disease, the treatment and the relationship with the patient).