The Family Is the Social Context of Health and Illness
Our experience of health, illness, and health care, as patients and as practitioners, occurs in a social context. The “family” is at the heart of that context. Practicing “family-centered care,” that is, making the patient’s social context an explicit part of medical care, will affect every step of the clinical process, from basic assumptions about who the patient is to the conceptual framework for the database, theories of causality of symptoms, and the implementation of treatment. Our patients with chronic diseases survive by virtue of the help their families provide and suffer from the burdens their families impose; often both occur at the same time. Consider the following vignettes:
Despite wondering whether she could have done something more for Joe, the doctor is gratified and reassured by the family’s overwhelming thanks for the “wonderful care” she provided for the past 10 years, and in particular during the time preceding the patient’s death. The family is grateful for her help in family discussions about end-of-life care.
Eric is a 40-year-old man with diabetes who has extraordinary difficulty following a reasonable diet. His partner has been unwilling to change his expectations about their meal plans and he has been unable to negotiate a change with him.
Mary, 50 years old and previously without complaints, presents with headaches that have been ongoing for 2 months. She is afraid she has a tumor or “something bad.” A brief discussion about her family reveals that her 60-year-old husband has been depressed and forgetful for at least 6 months. Two months ago he got lost on his way home from the hardware store. After her doctor listens to her story, she agrees that she too is depressed and very concerned about her husband. She is upset that he has refused to see a doctor. She accepts her doctor’s offer to help her get him evaluated, but she is still worried that her headache is something bad.
Eva, who is 27 years old, has multiple somatic complaints and panic disorder. She was raised by her grandmother after her mother died, and when her grandmother died 4 years later, by an aunt 20 years her elder. She and her aunt became very close, “almost like sisters, we did everything together.” After completing college she returned to live with her aunt, who had recently begun the first serious relationship of her life. Eva does not understand why her aunt needs a boyfriend, and reports that her panic attacks often interrupt her aunt’s plans to spend time alone with her fiancé.
In every case, the family context is critical to understanding the situation. In the case of Joe, the doctor has attended to both patient and family and the family is a partner in care and grief. Eric’s partner’s unwillingness to adapt their diet to Eric’s diabetes has become a significant barrier ...