How Much Say Should Caregivers Have in Your Treatment Decisions?

In the past, medical decision-making occurred in a passive, patriarchal model. The physician (usually male) made a recommendation and the patient complied. Over the past several decades, a shared decision-making model has replaced this top-down approach. In shared decision-making, the patient’s desires and preferences for her care are taken into consideration alongside the recommendation of the clinician. Shared decision-making aligns the goals of the patient with the treatments offered by the physician. Recent research suggests, however, a new decision model that includes input from physicians and patients as well as caregivers may be the way to go.

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The Role of the Caregiver

Patients are usually accompanied in their cancer journey by a primary caregiver — usually a spouse, partner, or friend. This primary caregiver is present for most medical appointments and often the cancer patient relies on this person to provide input and support. Although caregivers and patients agree that the final decision rests with the patient, caregiver involvement in treatment discussions is critical. Higher caregiver involvement, for example, is associated with improved patient satisfaction with their care, increased adherence to a recommended plan of treatment, and less regret by patients that they have made the “wrong” decision.¹

Relationship Roles May Change During a Cancer Diagnosis

Hearing the word “cancer” sets off a cascade of emotions: anger, fear, sadness, guilt and many others. Patients diagnosed with cancers associated with human sexuality like breast, prostate, cervical or anal cancers may also have concerns about changes in body image, be worried about their ability to perform their desired sexual roles or express shame in having cancer associated with these organs.¹ These cancers can have physical effects that impact potency and sexual enjoyment in patients with established partners or create anxiety in patients seeking relationships. The same uncertainties can be felt by the partners or caregivers of friends and lead to unexpected shifts in relationships. Acknowledging any feelings of loss that may accompany this change and how those impact treatment decisions is important.

Respect Caregiver Differences

Although most patients want caregivers to be involved in their cancer care and most caregivers want to be involved, this is not always the case. In instances where the patient-caregiver dyad includes a child-parent instead of married partners, for example, the child or adolescent may defer more decisions to the caregiver. Miscommunication about cancer or clashes among family members can also lead to differences between the patient, the primary caregiver and others. Cultural norms may also influence decision-making roles.^2,3

To begin, take time to acknowledge the role of a caregiver in your cancer care and the effect of your cancer diagnosis on their lives. Scheduling time to discuss your caregiver's feelings, separate from your own, may be helpful in aligning your expectations. Routine check-ins with your caregiver, perhaps in the presence of a licensed therapist, can also help eliminate unnecessary conflict. The result: you both benefit from improved quality of life, increased satisfaction with treatment and a stronger relationship in what can be a challenging time.