Implications
Pain and Suffering in Nursing Homes
Pain is an individual experience, and nursing home residents are at particular risk of persistent uncontrolled pain. Complicating this is the experience of living in a nursing home where barriers to effective pain management and suffering are related to regulatory guidelines, staff knowledge and education, and unclear goals of care. Nursing home residents are at increased risk for suffering as they often experience more loss than others with life-limiting illness. Not only do many institutionalized older adults lose independence, but also they experience changes in quality of life related to dependence on others, initiation of unfamiliar routines, and potential risk of inadequate symptom management related to staff focus on curative/restorative care. Older adults, especially nursing home residents with cancer pain, are rarely involved in randomized clinical trials that contribute to evidence for treatment recommendations. Therefore, guidelines are often based on available research and literature, not reflective of the population being treated.
The Minimum Data Set 3.0 (MDS 3.0) nursing homes assessment tool contains sections that assess depression, pain, and goals of care. Researchers recognize that clinician observations often misjudge the presence of and severity of symptoms. Therefore, having discussions with residents is necessary to properly report on symptoms and goals of care. The expectation is that that MDS 3.0 will reveal residents experiencing uncontrolled pain and persistent depression and initiate care planning related to a resident's disease trajectory and/or functional status, but should never replace a comprehensive assessment.
Nursing
Recognizing that pain is not only "physical" is the cornerstone of symptom management in palliative care. Nursing plays a central role in the assessment and care of a person in pain and, in particular, an older adult with cancer. Through a combination of science, presence, openness, compassion, mindful attention to detail, and teamwork, the nurse creates and sustains a relationship that facilitates quality palliative care (Figure). Nursing, like all disciplines, however, has limits to scope of practice. Interdisciplinary collaboration is essential in ensuring that complex patient and family needs are assessed and addressed.
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Figure.
Key points
Role of the Certified Nursing Assistant
The nursing home setting adds an additional level of complexity to the care, but also provides an important opportunity to involve the certified nursing assistant (CNA). Oftentimes, the staff, in particular, the CNAs, may become an important extension of the resident's family and can provide important insight into pain and suffering. Given that in some settings, especially in nursing homes, the vast majority of hands-on care is provided by the CNA, they play a unique and important role in interpreting and supporting palliative care approaches. Although education is important, involving and allowing everyone—in particular those providing the most care—to participate in the care planning process and reflect on their personal beliefs and values are critical. Table 2 identifies ways to facilitate CNA involvement in the care of a patient receiving palliative care throughout setting transitions.