Ms. Stout is a 58-year-old divorced mother of two. Her eldest son, Paul, aged 35, has cystic fibrosis and is the recipient of a lung transplant. He has several developmental delays, and his comprehension of medicolegal documents becomes quite limited when he is medically ill and on narcotics. His outpatient medical team is aware of this and includes his mother in all treatment decisions.
However, in the hospital, the medical teams do not appreciate his limitations. In the inpatient hospital setting, he does not retain information presented to him. They question his mother’s continual presence and see her as "overinvolved and enmeshed with her adult son." Ms. Stout says that she has to fight with each new physician team to get them to understand that they need to involve her in all her son’s health care decisions. The younger male physicians, especially, identify with Paul.
Paul presents as a well-adjusted young man. He is agreeable, open, and friendly with the staff. Paul has limited social contacts outside of the hospital. Because of his lengthy involvement in the hospital care system, he is comfortable in the hospital and especially enjoys his interaction with the female nurses. He understands basic procedures because they have been repeated so many times. However, he does not understand his complex health care needs. Unless his comprehension is specifically tested, his deficits go unrecognized.
His mother knows the details of his history and is a better resource than the chart. She insists on being present at all times, despite the demands of her other commitments. Each time her son is admitted, she faces scrutiny, and repeatedly has to explain herself and her son’s limitations to each new physician. She finds this situation exhausting and humiliating. She does not understand why her presence cannot be accepted as helpful.
The toll of caregiving
Family caregivers face many physical, emotional, and financial demands that make them vulnerable to stress-related conditions, both physical and psychological. Caregiving affects caregivers’ health, which, in turn, affects their ability to provide care. The Caregiver Health Effects Study demonstrated a strong link between caregiving and mortality risk, finding that elderly caregivers supporting disabled spouses at home were 63% more likely to die within 4 years than noncaregiving elderly spouses (JAMA 1999;282:2215-9). In addition, family caregivers often lack the time and energy to prepare their own meals, exercise, or engage in their own preventive medical care. Physicians must stress the importance of caregiver self-care for the benefit of both the caregiver and the patient, and identify appropriate sources of community support services, such as home health aides, respite, or adult day care.
In 2008, according to Suzanne Mintz, a cofounder of the National Family Caregivers Association, the estimated market value of the family caregivers’ services was $375 billion annually. Almost one-third of the U.S. population provides care for a chronically ill, disabled, or aged family member or friend during any given year and spends an average of 20 hours per week providing care for loved ones. Two-thirds of caregivers are women, and 13% of family caregivers are providing 40 hours of care a week or more.
The American Psychological Association has a "Caregiver Briefcase." The briefcase contains caregiving facts; a practice section with common caregiver problems and interventions; and sections on research, education, and advocacy. The website and its contents are useful for family members as well as professionals.
In addition, the American Psychological Association offers ways for family members to integrate into health care teams. For example, electronic medical records can allow family members access to portions such as the patient’s problem and medication lists and most recent laboratory findings. Family caregivers can provide ongoing, real-time observations about the patient through the portal, as well as share information about what it is like to be a family caregiver. Those secure messages become part of the patient’s permanent medical record.
Shifting patient decision making to family members is a delicate negotiation between the patient’s ability to make independent decisions and the family’s desire to protect the patient from potentially poor decisions. At critical times, the family has to step up and assume decision-making responsibility for the patient.
To help physicians understand the ethics of this process, the American College of Physicians offers guidelines to help the physician know how best to collaborate with the patient and the caregiver (J. Gen. Intern. Med. 2010;25:255-60). These guidelines are endorsed by 10 medical professional societies, including the Society of General Internal Medicine, the American Academy of Neurology, and the American Academy of Hospice and Palliative Medicine.