Resident Health and Functional Status Characteristics
Nursing homes provide a wide range of services, meeting a proliferation of resident needs. Geriatrician Robert Kane groups nursing home care into five categories: rehabilitation and subacute care; chronic physical, but not mental, disability; dementia; permanent vegetative states; and terminal illness (Kane, 1996). Complicating matters is the fact that many residents require several categories of care. Furthermore, each category encompasses multiple subdivisions. For example, some with dementia are bed bound. Some persons with dementia are chronically ill, while others (or the same person at a different time) are terminally ill.
In the recent past, care needs of long-term care residents have steadily increased. Over the past decade, as more alternatives to nursing homes (in particular assisted living) have become available, some people have avoided nursing homes entirely (e.g., by utilizing the hospice waiver they can remain in an assisted living facility as they approach the EOL), and others have postponed entry into a nursing home. It has become increasingly important for people entering nursing homes to engage in advance care planning (ACP). The federal government has instituted a care planning system in American nursing homes that, if used properly, can facilitate ACP.
Federal Laws Related to Advance Care Planning in Nursing Homes
Most nursing homes (88%) are certified to receive both Medicare and Medicaid (NCHS, 2006, Table 1). As a condition of retaining Medicare/ Medicaid certification, nursing homes must comply with federal regulations. Two statutes are directly related to ACP: the Omnibus Reconciliation Act of 1987 (OBRA, 1987) and The Patient Self-Determination Act (PSDA) of 1990. The PSDA requires health care facilities (including hospitals and nursing homes) to notify patients upon admission that they have the right to have an advance directive (AD; see Chapter 1). As part of the admission process, nursing home residents are to be asked if they have an AD. The nursing home must include copies of the document in the medical charts of those residents who present them. The nursing home is responsible for informing patients without ADs that they may make such documents, and the facility must provide basic information about ADs.
In 2004, the National Center for Health Statistics (NCHS) collected data on the prevalence of ADs among nursing home residents. They found that 18% of residents had a living will in their chart, and just over half (56%) had a do not resuscitate (DNR) order (Jones, Moss, & Harris-Kojetin, 2011). The presence of either of these forms of ADs varied by age and race. Older residents and white residents were most likely to have an AD in their medical chart.
While the PSDA is focused on the presence of a document (the directive), the OBRA mandates minimum care plan processes for Medicare-and/ or Medicaid-certified nursing homes. The law requires that all residents of a Medicare-and/or Medicaid-certified nursing home have an individualized care plan. To develop the care plan, the Centers for Medicare and Medicaid Services (CMS) require certified nursing homes to use a standardized assessment tool, the Minimum Data Set (MDS). The current version, MDS 3.0, collects data on hearing, speech, and vision; cognition; mood; behavior; preferences customary routines and activities; functional status; bladder and bowel; diagnoses; health conditions; nutrition; skin; medications; special treatments; and use of restraints. Information from the MDS is to be used by the interdisciplinary team to develop a care plan. The staff is expected to invite the resident to the quarterly care plan meeting, and the resident may ask that the family be included. We found no nationally representative data that describe the extent to which residents and/or family are present at care plan meetings, but anecdotal evidence suggests that family attendance is uncommon. Furthermore, it is unclear how fully residents and family members are informed about changes in the care plan when they do not attend the meeting.
Not only is it uncommon for residents and family members to attend care plan meetings, physicians do not usually attend either. As a result, key perspectives are missing from the mandated meetings. The absence of the resident, family, and physician voices diminishes the possibility of a comprehensive care plan being developed and fully communicated, and therefore confounds efforts to get all necessary parties on the same page.
The Social Support System of Nursing Home Residents
Most nursing home residents (79%) are visited in the nursing home at least weekly, and family members comprise 82% of visitors (the most frequent visitor [52%] is the resident's adult child) (My Inner View, 2010). It is not uncommon for residents to receive weekly or monthly phone calls (or increasingly electronic communication) from family members living far away. The notion that families usually abandon their members after admission to nursing homes is a myth. It is, however, a fact that some residents outlive their support systems and many (53%) are widowed (NCHS, 2008, Table 12). The members of the residents' “circle of support” (family, friends, worship community, etc.) are often called upon to participate in medical decision making with or on behalf of the resident. With approximately half of residents cognitively impaired (AHCA, 2012, Table 12), the role of family and friends as surrogate decision makers becomes all the more important.