Making the Family Caregiver a Part of the Healthcare Team

As a part of healthcare reform, interest has been high on the concept of patient-centered care. But sometimes, an important presence may be overlooked in providing quality patient-centered care to that patient: the family caregiver. Today, more than 30 million family caregivers play major roles in overseeing and promoting the health and quality of life of individuals with acute and chronic illnesses.

This month, the American College of Physicians (ACP) issued a position paper that provides ethical guidance in addressing the role of the family caregiver whom patients depend on for assistance with daily activities, managing complex care, navigating the healthcare system, or communicating with healthcare professionals.

Although hospice and palliative care programs address the impact of illness on patients and families, the patient physician relationship historically has focused on the patient and his or her rights and interests. Less attention has been paid to the patient's experience within the context of his or her family and social relationships, the paper's authors state.

"I think that as healthcare is moving more and more towards teams of people taking care of patients, we have to look at the composition of those teams—including more and more family members," says one of those authors, Virginia Hood, MD, chair of ACP's Ethics, Professionalism and Human Rights Committee. "That includes, of course, friends as well as direct family members."

Physician recognition of the value of the caregiver role may contribute "to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization," says Hood, a nephrologist and professor of medicine at the University of Vermont in Burlington.

It's important to examine the roles of caregivers in the provider-patient-caregiver relationship, as well, she says. "We should think about what the ethical issues are that come up when you add a new person to the team."

The paper, which was endorsed by 10 other professional medical societies, outlines four primary principles for physicians or providers, who may face ethical challenges collaborating with patients and caregivers in a variety of situations while preserving the primacy of the patient physician relationship:

1. Respect for the patient's dignity, rights, and values should guide all patient physician caregiver interactions. As part of this, the authors note that physicians routinely should assess a patient's wishes regarding the degree of caregiver participation in a clinical encounter—striving to provide the patient's desired level of privacy.

According to the Health Insurance Portability and Accountability Act (HIPAA), health professionals can share relevant healthcare information with a family caregiver—if the patient agrees or does not object to the disclosure.

2. Effective communication and physician accessibility are fundamental to supporting the patient and family caregiver. Here, physicians or providers should strive to ensure that the patient, caregiver and other family members have "a common, accurate understanding of the patient's condition and prognosis," the authors say.

Sometimes, physicians believe they provide far more information to caregivers than caregivers believe they receive: Physicians' use, for instance, of medical jargon and technical terminology can be confusing to family members.

3. The physician should recognize the value of family caregivers as a source of continuity regarding the patient's medical and psychosocial history. Sometimes caregivers can find themselves in the shadows, Hood notes.

In a care setting, for instance, caregivers may be treated as if they are in the way. "That's something as providers that we have to change—if it's ever there," Hood says.

"These are incredibly valuable people. They often know more about a patient's history . . . than do some of the other providers because they've been there," she says.

4. When the caregiver is a health care professional, the physician should draw appropriate boundaries to ensure that the caregiver is not expected to function in a professional capacity in relation to the patient.

When the family caregiver is a health professional, caregiving may bring added or unique pressures and ethical challenges, the authors say. The treating physician should assist in setting reasonable patient and family expectations regarding the caregiver's role in interpreting disease processes, prescribing medications, or dealing with new symptoms.