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JAMA Advocates for Families in Healthcare

Posted By Jo Ellen Patterson, Tuesday, November 6, 2012

Several years ago the Board of CFHA did some soul-searching about the name of our association. Some members wondered whether "family” should remain in the title since most medical care is, in fact, individual care.

I thought about the discussion that the Board had when I read a recent editorial in the Journal of the American Medical Association. A health policy expert from Johns Hopkins reiterated the importance of including families in both service delivery and policy decisions (Wolff, 2012). I was not surprised when she drew on research and policy that focused on older adults and the aging of the American population. As the baby boom generation enters old age and lives longer than any previous generation, Americans face a crisis. Who will care for aging Americans, and how will that care be paid for? Wolff quotes a Congressional Budget Office report that says, "The value of donated care probably exceeds that of any other category of long term care financing but is difficult to quantify in dollar terms” (p 1529).

Wolff goes on to note the many barriers to supporting families. She references legal barriers that exclude family members from both knowledge and decision-making capacity about their loved ones. Her description of legal and medical-culture barriers made me think of a family crisis I recently observed.
JoEllen Patterson
"Families with small children, disabled members, and chronically
ill loved ones all struggle with inclusion, confused roles, and boundary ambiguity when they
face health crises."

A hospitalized male patient had both leukemia and bipolar disorder. During his hospital stay he became violent but was restrained. His family had little understanding of his recent diagnosis of bipolar disorder and felt panic as they watched their loved one decline. Citing legal reasons and hospital policy, the floor nurses said they could not provide the family any information about his erratic behavior. Eventually his sixty year old wife and eighty-two year old mother awoke at 4:00 a.m. so they could be at the hospital by 5:00 a.m. in case the oncologist rounded that early. When that effort failed, they "camped out” in the physician’s office waiting room for five hours only to be told that the oncologist did not have consent (from a manic patient) to release medical information to them. While this difficult situation unfolded, the wife’s unspoken fear was that her violent husband would be sent home, and she would be fully responsible for his care. She simultaneously felt terrified of his violent behavior and fearful of watching his painful death. She felt overwhelmed.

Caregiver burnout, fear, guilt, and confusion are common emotions of patients’ families. In spite of families’ confused roles in health care, Wolff suggests that families now serve "as the backbone of medical and long-term care delivery” (p 1530). She also suggests that families’ contributions must be measured and documented before they can be valued. She offers specific suggestions on ways to include families:

  1. Health information should be made available to family members according to patients’ expressed wishes.
  2. Important aspects of family functioning that influence caregiving should routinely be documented in the medical record.
  3. Screening of family caregivers should be part of routine care.
  4. Family members’ presence and identity at a patient’s health care encounter should be documented, and different perspectives on the problem should also be included in the patient’s documentation.

Families with small children, disabled members, and chronically ill loved ones all struggle with inclusion, confused roles, and boundary ambiguity when they face health crises. When a patient leaves the physician’s office or the hospital, his care often becomes the primary responsibility of family members. While older patients are not the only family members that need their clinicians and family member to work together, a possible benefit of the health care crisis created by aging baby boomers could be that the American health care system finally takes the contributions of families seriously.


Congressional Budget Office. Financing long-term care for the elderly. Washington, DC: Congressional Budget Office; 2004.

Wolff, J. Family matters in health care delivery. Journal of the American Medical Association. 2012; 308(15):1529-1530.


Jo Ellen Patterson, Ph.D. is a professor at the University of San Diego. She is also a Clinical Associate Professor in the Departments of Family Medicine and Psychiatry at the University of California School of Medicine in San Diego.

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Comments on this post...

Randall Reitz says...
Posted Monday, November 12, 2012
Jo Ellen, thanks for the insightful post. I hadn't seen the JAMA article. I'm revamping my residency curriculum on family-oriented care. This article and Wolff's 4 suggestions will fit the bill perfectly.
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Lisa Zak-Hunter says...
Posted Wednesday, November 14, 2012
I just came across this and am glad I did. It will offer some great practical suggestions for including partners in care for a noon conference I am giving on couple dynamics during breast cancer diagnosis and treatment. I also see it being beneficial down the road as our residency becomes a PCMH. Thanks!
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