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The Roger C. Lipitz Center for Integrated Health Care

Posted Date: March 5, 2014

Strengthening the Older Patient-Family Caregiver Partnership to Improve Patient-Centered Care

Jennifer Wolff

Patient-centered care has been described as “true north” in health care quality. (Berwick 2009) Attaining patient-centered care within the prevailing 15-minute medical visit may be especially challenging in the care of older patients.  Older patients often have complex health needs and treatments.  Relative to working age adults, older patients are also more likely to have communication problems as a result of low health literacy, sensory or cognitive deficits, and they tend to ask fewer questions and provide less information to their health care providers. (Adelman, Greene, and Ory 2000)  Because patient-centered care by definition requires patient involvement, numerous strategies have been developed to engage patients actively in their care.  Few strategies specifically address older patients’ health needs or circumstances.  
In a recent study published in the Journal of the American Geriatrics Society my colleagues and I describe a pragmatic strategy to address vulnerable older patients’ communication challenges. (Wolff, Roter, Barron, Boyd, Leff, Finucane, Gallo, Rabins, Roth, and Gitlin 2014) The strategy targets the partnership between older patients and the unpaid companions who accompany them to medical visits. Existing evidence indicates this approach is appropriate.  Nearly 4 in 10 older patients attend medical visits with a companion– most often a spouse or adult child. (Wolff and Roter 2011) Older patients who attend medical visits with a companion generally have low levels of educational attainment, poor health status, and are heavy users of health services. (Wolff and Roter 2008) Their companions actively participate in visit dialogue in varied ways that can alternatively promote or inhibit patient participation, (Wolff, Clayman, Cooke, and Roter forthcoming)  and companion  involvement typically endures over time. (Wolff, Boyd, Gitlin, Bruce, and Roter 2012) Both patients and providers strongly endorse family involvement as an effective way to bridge medical visit communication barriers, but evidence-based strategies that specify how to involve them in medical visits do not now exist.  
Therefore, to meet this need, a multidisciplinary study team of faculty in the Johns Hopkins Schools of Public Health, Nursing, and Medicine developed an agenda-setting checklist for older patients and their companions to complete while sitting together in the waiting room before a scheduled appointment. To complete the checklist, a patient and companion review a list of common geriatric health issues and individually note their level of concern about each issue in relation to the patient’s health.  Then, together, the patient and companion discuss which issues they would like to raise with their health care provider during the visit.  Finally, patients review a list of types of companion behaviors (e.g., remembering what the doctor says, asking the doctor questions) and identify what help they would like from their companion during the visit. We hypothesized that older patients and companions who completed the checklist would have greater clarity about the visit agenda and the companion role, and as a result, that medical visit communication would be more patient-centered.  
We enrolled and randomized a total of 32 patient-companion pairs to complete the checklist (n=17) or to usual care (n=15) in a pilot study at the ambulatory clinic operated by the Johns Hopkins School of Medicine Division of Geriatric Medicine and Gerontology. Enrolled patients were about 82 years of age and took on average ten daily prescribed and over-the-counter medications. Patients were most often accompanied by a spouse or the adult child who they reported helped “the most” with health-related activities. All 17 patient-companion pairs who were randomized to the checklist successfully completed it in the clinic waiting room immediately prior to their scheduled visit.  Participants overwhelmingly endorsed the checklist as easy to complete and useful, and stated that they would recommend it to other patients.  
Our most notable findings were consistency of patient and physician post-visit survey responses and audiotaped dialogue indicating that intervention group companions were more actively engaged in the medical visit in a manner that was beneficial to patient care and communication (see Figure).  In post-visit surveys, physicians were significantly more likely to agree or strongly agree that intervention (vs. usual care) companions “helped them provide good care to the patient” (94.1% vs. 60.0%; p=0.02). Intervention patients were significantly more likely than usual care patients to agree or strongly agree that due to involvement of their companions they “better understood their doctor’s advice and explanations” (82.4% vs. 46.7%; p=0.03). In analyses of audiotapes of the medical visits, intervention patients and companions were found to engage in significantly more lifestyle and psychosocial dialogue and less biomedical discussion than the control group, differences that indicate more patient-driven dialogue. We found that visit communication was significantly more patient-centered in intervention (vs. usual care) visits (1.22 vs. 0.71, respectively; p=0.03) using a well-established measure, a ratio that encompasses statements that reflect the lived experience of patients in relation to statements that reflect a more biomedical and disease-focused perspective. 
By striving to engage the companion as desired by the patient, our intervention is consistent with ethical guidance set forth by physician organizations in emphasizing: (1) respect for patient dignity, rights and values; (2) the use of physician communication to support accurate and shared understanding of the patient’s condition and treatment goals; and, (3) the value of family involvement in continuity of care. (Mitnick, Leffler, and Hood 2010). By targeting older patients who attend medical visits with a companion, the approach is directed to a selected population that is both high-risk and costly and to a partnership that is enduring. The intervention is practical in that it involves minimal cost, does not require restructuring of provider practice, and seeks to optimize a naturally occurring partnership between patients and a member of their existing social support network.  
Many health reform efforts now underway seek to deliver greater value, improved quality, and better health.  Few of these efforts explicitly address the partnership between patients and the family members and friends (“family caregivers”) who are involved in their care.  As chronically ill patients commonly navigate the health system and manage their health with family caregivers, (IOM 2008) efforts to strengthen the patient-family caregiver partnership could yield better outcomes for some of the most vulnerable and high cost patients.  For example, routine screening of family caregivers of high-risk patients (e.g. individuals assisting persons with dementia) to address identified needs could improve the effectiveness of innovative models, such as the Patient-Centered Medical Home.  Clarifying health information technology standards for shared access to personal health information through secure internet portals could ensure the privacy of patients’ health information, while facilitating information access to designated family caregivers who may be responsible for coordinating patients’ health information. (Sarkar and Bates 2014) Recent initiatives to rethink the conventional doctor’s visit (e.g., by using innovative technologies  to monitor, support, and connect to patients outside of the office could benefit by clarifying the role of family caregivers in an ideal physician visit of the future.
Group Differences in Medical Visit Communication Graph
Adelman, RD, M Greene, and MG Ory. 2000. "Communication between older patients and their physicians."  Clin Geriatr Med 16:1-24, vii.
Berwick, D. M. 2009. "What 'patient-centered' should mean: confessions of an extremist." Health Aff (Millwood) 28:w555-65.
IOM. 2008. Retooling for an aging America: Building the health care workforce. Washington, DC: The National Academies Press.
Mitnick, S, C Leffler, and VL Hood. 2010. "Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships." J Gen Intern Med.
Sarkar, U. and D. W. Bates. 2014. "Care partners and online patient portals." JAMA 311:357-8.
Wolff, JL, CM Boyd, LN Gitlin, M Bruce, and DL Roter. 2012. "Going it Together: Persistence of older adults' accompaniment to physician visits by a family companion." J Am Geriatr Soc 60:106-12.
Wolff, JL, ML Clayman, P, MA Cooke, PV Rabins, and DL Roter. forthcoming. "An exploration of patient and family engagement in routine primary care visits." Health Expect.
Wolff, JL and DL Roter. 2008. "Hidden in plain sight: Medical visit companions as a quality of care resource forvulnerable older adults." Arch Intern Med 168:1409-1415.
—. 2011. "Family presence in routine medical visits: A meta-analytical review." Soc Sci Med 72:823-31.
Wolff, JL, DL Roter, J Barron, CM Boyd, B Leff, T Finucane, JJ Gallo, PV Rabins, DL Roth, and LN Gitlin. 2014. "A tool to strengthen the older patient-companion partnership in primary care: Results from a pilot study." J Am Geriatr Soc 62:312-319.