Patient centered long-term care - Patient Centered Care

Health Care Financing Review, Winter, 1997 by Nancy A. Miller

INTRODUCTION

While a patient's desire to have a voice in determining how and where care is delivered would seem to be self evident, it has only been in recent years that interest in better understanding and incorporating the patient's perspective into actual care delivery has been at all common. But this interest is growing, and a body of work that attends to patients' desires and concerns for medical care is developing (Kravitz, 1996). Principally, this work has focused on the patient's preferences, and expectations in the context of defining and assessing quality of care (Campen et al., 1995; Cleary and Edgman-Levitan, 1997; Kravitz, 1996). Conceptual models that posit relationships between these expectations and clinical processes and outcomes such as quality of life have been proposed (Kravitz, 1996; Wilson and Cleary, 1995). In addition, a variety of instruments that assess the quality of care from the patient's perspective have been developed (Campen et al., 1995; Cleary et al., 1991), and the use of this information to inform clinical encounters and trials, as well as to inform health policy, has been proposed (Lundberg and Wennberg, 1997; Tsevat et al., 1994).

The phrase "patient centered care" is attributable to a major Picker/Commonwealth initiative that focused on identifying the dimensions of hospital care that patients considered most important. As part of this initiative, a national survey of patients that assessed their recent hospital experiences based on these patient-identified care dimensions was conducted (Cleary et al., 1991) with the result that hospitals can now use this instrument as a way to measure and improve care.

Other studies have focused on patients' experiences in ambulatory care settings (Campen et al., 1995; Cleary et al., 1993; Kravitz, 1996). For example, Cleary and his colleagues developed a set of scales that assess the symptoms and functioning of persons with AIDS receiving primary care, and the study notes the utility of such an assessment in evaluating disease impact and potential treatments.

Although this shift in emphasis is intended to ground care provision and evaluation of that care in patients' needs and expectations, patients have been used sparingly in the actual development of instruments to measure care (Campen et al., 1995; Cleary and Edgman-Levitan, 1997; Gill and Feinstein, 1994). Campen et al.'s review of instruments developed to assess the quality of care from the patient's perspective identified only one instrument that offered a method for generating items (that is, single questions) that directly represent patients' views of ambulatory and home care (Campen et al., 1995). Other designers of instruments have implicitly disregarded the differences between physicians' and patients' perspectives for item generation, despite substantial evidence that a patient's perspective on quality of care differs from physicians, other providers, and policymakers.

But in the area of patients' concerns and preferences related to LTC this body of work has been notably silent. LTC, in contrast to acute care, is often intimate and personal in nature (Degenholtz, Kane, and Kivnick, 1997). By definition, LTC is provided over an extended period of time, and for some persons, over a life time, shaping one's daily life and one's opportunities for work and community participation (Kane, Kane, and Ladd, 1998). Decisions about where and from whom to receive services, how much control one might want to have over the service provision, what outcomes of care are desired, derive from values and beliefs that are quite personal. Thus, patient centered care--drawing upon an individual's needs, values, and expectations to guide decisionmaking and caregiving--is particularly integral to LTC.

Extending the concept of patient centered care to LTC service delivery requires attention to several issues. Acute care decisions and care emanate from a medical professional, ideally in consultation with the patient. Conversely, family members frequently fill pivotal roles in LTC, both in making decisions about services, settings, and outcomes, as well as in the day-to-day provision of LTC. Due in part to the intimate and personal nature of LTC, and the often extended period of time over which it is provided, the process of caregiving--who provides the care and how that caregiver relates to the patient/client, takes on added importance (Kane et al., 1994). LTC is a blend of health and social services. As a result, goals extend beyond those related to physical and mental well being to include social and even spiritual well being (Kane, Kane, and Ladd, 1998). In particular, goals derived from social well being are gaining increasing prominence under the influence of the disability rights and independent living movement and its emphasis on independence and social integration (Harrington, et al., 1998; Kaye and Longmore, 1998; Wiener and Sullivan, 1995). This more socially-oriented model of LTC argues for an active client who makes decisions about, and often directs, the provision of LTC services. Quality of life, measured by attainment of goals such as self-sufficiency, becomes the focal point of LTC service provision. Availability of community-based LTC services is essential to supporting these broader social goals (Batavia, DeJong, and McKnew, 1991; Harrington et al., 1998; Wiener and Sullivan, 1995).