Main Family Caregiver

Seriously ill people are often unable to oversee their illness or live their lives independently. Nor are they always able to make responsible medical based decisions. Family caregivers can fill this gap. Often one particular family member assumes this role. This person is termed the main family caregiver (MFC). The motivating factors for taking on this demanding voluntary role are complex and variable. Legal designations such as advanced directives or medical power of attorney, where they exist, may, at most, clarify the delegation of authority to the MFC but do not provide guidelines regarding fulfilling their role. Furthermore, this delegation is often informal or de facto rather than official or legal. In addition, a changing situation such as a deterioration of the patient may render a previous formal arrangement no longer relevant. Their task is complex because of the various demands made upon them, which may include technical skills, making crucial decisions and possible ethical conflicts. Moreover, the medical system, with its patient chart-based approach often does not address MFC involvement, even when critical and decisive. As the patient’s condition deteriorates, the nature of the MFC relationship with the patient evolves from primarily a family member to primarily a caregiver role. In the course of time, the MFC may find themselves overwhelmed or unable to perform their tasks competently. In short, the medical system frequently fails to acknowledge or take into account the important challenging and helpful role that the MFC plays in patient care. The attending physician, along with the treatment team, should guide and support the MFC in order to optimize their role in supporting their loved one.