ASSETS OF THE NURSING HOME SETTING
Most of this chapter has been devoted to challenges. It would be wrong to end without recognizing some of the assets and strengths of the setting. First, most families remain involved, indeed quite involved, with a family member who lives in a nursing home. In most cases, the families constitute strengths on which to build, especially during planning care for residents who are not able to communicate wishes. Second, two assets already in place that serve residents and their surrogates can be strengthened: the PSDA and the federal requirement for quarterly care plan meetings.
During the admission process and before the quarterly care plan meetings mandated by law, residents (when cognitively able) and the families should be encouraged to attend quarterly care plan meetings, either in person or through some electronic accommodation. If the resident and family cannot attend quarterly, a special effort should be extended to include them at least annually. Unless residents and/or surrogates opt out, these invitations should come in writing. Whether residents or the surrogates attend or not, they should receive a written summary of the care plan, signed by the staff person to be contacted for questions, objections, or further discussion. Each care plan should include the resident's goals of care, and should explicitly address how the care plan supports the resident's goals of care.
In addition to the strengths listed above, there are two other important assets available to nursing home residents: hospice care and the commitment of the nursing home staff.
Medicare covers hospice care when residents are eligible (see medicare.gov). Medicare beneficiaries can receive hospice in their own home, in a hospice setting, or in a nursing home. When nursing home residents receive hospice, they are entitled to all the care the nursing home usually provides as well as care from hospice staff and volunteers. This translates into a support team that specializes in medical, spiritual, and emotional care and support at the EOL. Hospice teams consist of the residents, families, nursing home staff, the residents' physicians, the hospice medical director, hospice registered nurses, hospice aides, social workers, spiritual counselors, music therapists, volunteers, and bereavement counselors. Care is provided by a team
specializing in assessing and addressing pain and symptom management. Invoking hospice can mean access to medicine and equipment not otherwise available, for example a more fully featured hospital bed. Plans for care are determined by goals of care. While nursing homes have residents as their target recipients, the hospice model constitutes the unit of care as patients together with their families. For example, family members of nursing home residents enrolled in hospice can access counseling, assistance with decision making, spiritual support, and bereavement care. In addition, the caseload for hospice workers is much lower than for nursing home workers, so hospice staff and volunteers are able to spend more time with residents. In addition, hospices employ health professionals (nurses and social workers) with higher levels of education than are available in many nursing homes.
Although the percentage of nursing home residents who receive hospice services before death has been steadily increasing from 14% in 1999 to 33% in 2006 (Miller, Lima, Gozalo, & Mor, 2010), hospice benefits remain underutilized. One third of hospice users in general are enrolled in hospice for less than seven days before death, even though the benefit is for anyone who has a terminal illness and is expected to live for 6 months or less (National Hospice and Palliative Care Organization, 2012). Families often say, “If only we had known what hospice provides, we would have contacted them earlier.” At admission, if appropriate, and during any care planning, nursing homes should inform residents and their families of this option.
The Importance of Nursing Home Staff
Staff members have the power to greatly improve the experience of living and dying in a nursing home. ACP for nursing home residents must build on the strengths of the staff. Those residents who enter having already established an ACP process should share their goals and plans with the staff. The staff is responsible for documenting these goals and preferences in the residents' medical chart and revisiting them regularly. However, not all newly admitted residents have embarked on ACP prior to admission. Therefore, every nursing home should have a few staff members (preferably nurses and/or social workers) who have been specially trained to conduct ACP discussions with residents and, if the resident is willing, with family. The discussions and decisions resulting from the planning sessions must be documented for other staff to benefit. The goals of care should be reviewed as part of the quarterly care plan meetings.
Unlike in the hospital setting, nursing home staff interact with residents and families over extended periods of time, over weeks, months, and years. Trust, mutual respect, and affection often develop. In some cases, the nursing home staff members know aspects of the residents' day-to-day life better than the families. Especially in the case of residents with severe cognitive impairment, the knowledge held by the staff combined with that held by the family can enable the team to develop an appropriate care plan that enhances the resident's quality of life, and when the time comes, quality of death.
Trusting and supportive relationships among residents, family, and staff constitute assets when medical crises emerge, and decisions must be made. Anything that the stakeholders in nursing home care can do to facilitate supportive relationships among residents, staff, and families should be pursued. Licensed social workers in nursing homes have many skills that can help strengthen the social environment in the nursing homes, for example, skills in interpersonal communication, crisis management, team building, decision making, advocacy, dealing with grief and loss, and facilitating groups.