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Palliative Care Practice for Advanced Dementia: Regulatory Friend or Foe?
Services provided in nursing homes and long-term care (LTC) facilities are typically rehabilitative, restorative, or curative even though many who enter these institutions will die there. According to data from the Centers for Disease Control and Prevention, approximately 22% of deaths in the United States occur in nursing homes.1 Likewise, a study of mortality in England and Wales found that nearly 25% of deaths in those countries take place in nursing homes.2 In the United States, the proportion of nursing home deaths increases with age. In 2007, nearly 40% of Americans aged 85 years and older died in a nursing home.3
Federal regulations emphasize curative efforts in LTC settings, which has promoted a strong, enduring culture of aggressive medical treatment.4 Some practitioners pursue life-prolonging strategies and defensive medical practices to avoid punitive measures or penalties, but strict adherence to defensive interventions could short circuit attempts by residents and their proxy decision-makers to establish goals favoring personal comfort, or palliative care. Although federal regulations often seem “black and white,” our research teams identified a continuum of “gray” in the regulations that can be used to support palliative care as standard practice.5-9
Our research teams, based in Arizona and Illinois, succeeded in integrating a program of palliative care that emphasized comfort-focused strategies into advanced dementia care without compromising regulatory compliance. The training program consisted of classroom instruction, clinical consultations for residents and staff, and meetings with administrators and directors of clinical and nonclinical departments. Resident and organizational outcomes were assessed before, during, and after training. A primary concern of administrative staff was how state surveyors would evaluate the new comfort-related program and whether it would meet regulatory compliance. The state surveyors randomly visited the facilities while the palliative care programs were being implemented, and no state or federal deficiencies were cited in areas where resident-centered palliative care policies or interventions were adopted. This article briefly describes the conclusions of both teams: personalized comfort care improves the quality of life for advanced dementia residents while coexisting with, and even supporting, the intent of LTC regulations.
What Is Palliative Care?
Palliative care focuses on preventing and relieving distressing symptoms during a serious illness through physical, psychosocial, and spiritual interventions. Numerous pharmacologic and nonpharmacologic options are available to reduce common symptoms such as pain, anxiety, and fear. Once palliation has been established as the overall goal, interventions that support comfort are selected and can be provided through consultation with a palliative care specialist or by educating nursing home staff on palliative care principles and methods.
Palliative care is an appropriate and realistic approach to caring for someone with dementia.10 A critical first step in providing palliative care to residents with advanced dementia is having a clear discussion of the individual’s goals and preferences, in consultation with his or her proxy decision-maker, who is often a family member. It is important to document these conversations. The approach to care must be tailored to the current strengths and abilities of the resident with the intent of improving quality of life. For residents whose life expectancy is ≤6 months, seamless transition from palliative care strategies to end-of-life care from a hospice is possible.
Regulations and Palliative Care
Historically, the medical model of care and services used in nursing homes requires that staff adhere to a prescribed routine of standardized tasks. This model of regimented, task-oriented care often meets the needs of the institution as a whole at the expense of residents’ individual needs, but may be sufficient for residents with subacute or rehabilitative needs. However, it fails to address the need for older institutionalized adults with dementia to receive person-centered care, a philosophical approach to care first described by British social psychologist Thomas Kitwood.11 He recognized that residents with dementia require comfort, identity, love, inclusion, attachment, and activity. He defined person-centered care as honoring the individual preferences of an adult with dementia. We found support for Kitwood’s philosophy of care in Section 300.7020, a regulation issued by the Joint Committee on Administrative Rules to address assessment and care planning:
The care plan shall be ability centered in focus…and shall define how the identified abilities, strengths, interests, and preferences will be encouraged and used by addressing the resident’s physical and mental well-being; dignity, choice, security, and safety; use of retained skills and abilities; use of adaptive equipment; socialization and interaction with others; communication, on whatever level possible (verbal and nonverbal); healthful rest; personal expression; ambulation and physical exercise; and meaningful work.12
Newer regulations for LTC emphasize choice, dignity, and personal expression and maintain that residents deserve a “say” in decisions affecting their care, even if this “say” is nonverbal. In 2011, the Centers for Medicare & Medicaid Services (CMS) introduced the Quality Indicator Survey (QIS) to meet the organization’s objective of increasing emphasis on person-centered outcomes. This survey process places greater focus on interviewing and observing residents and their families to determine goals, interests, and preferences specific to each resident. Although the QIS changed how surveys are conducted, federal regulations and interpretive guidelines have remained unchanged, resulting in less-than optimal consideration of residents’ comfort. Our research teams also identified the following regulations as supportive of palliative care principles: F-tag 279, “establishing a comprehensive plan of care that addresses a resident’s medical, nursing, mental, and psychosocial needs”; F-tag 281, “ensuring professional standards of quality care”; and F-tag 309, “implementing quality of care based on the individual needs.” In 2009, these three F-tags featured prominently among the 10 most common citations for nursing homes in Arizona and Illinois.13
With the goal of making person-centered care standard, we introduced ways for staff members to familiarize themselves with important aspects of residents’ lives, including their personal history and lifelong routines before moving to the nursing home. Family members are asked to complete an “About Me” questionnaire, which provides a snapshot of the resident’s favorite items, such as music or food.14 Ideally, a form listing the resident’s preferences but providing no information deemed confidential by the Health Insurance Portability and Accountability Act is displayed at the resident’s bedside so that everyone who comes into contact with the resident learns his or her preferences. Having this knowledge opens up opportunities for staff and families to engage with the resident in a meaningful way as his or her cognitive skills fade, perhaps by sharing the resident’s favorite song or discussing a lifelong interest.
Many nursing homes still use a regimented schedule, where times for waking, dining, and daily task-oriented activities are stipulated. Bowman15 states that the traditional, shift-driven schedule is not cost-effective: “To wake someone who does not want to be awakened, to take them to a meal they do not want to eat, to serve food they do not want to eat, only to take them back to their room to sleep in most cases, is not efficient.” Moreover, the waste of food and poor intake that leads to weight loss and reliance on dietary supplements increase the cost of care without benefitting those the care is meant to support.
The liberalization of routines—encouraging residents to set their own schedules for waking, eating, and bathing—is another way to transition to person-centered care. Several nursing homes are experimenting with schedules that revolve around the needs of their residents instead of the needs of the institution. For example, food may be served restaurant style, with staff members and managers participating in the dining experience. Efforts to liberalize routines for patients with dementia require reorganizing nursing, food service, and housekeeping routines; enhanced knowledge and understanding of dementia; and extensive communication and teamwork among many departments.
Based on our experience with the Arizona and Illinois programs, we believe the regulatory process and palliative care strategies can work in harmony to support residents with dementia and their families. Federal regulations uphold comfort-focused strategies when the goal is to deliver care in accordance with the needs and abilities of residents. When cure is no longer possible due to the progression of dementia, palliative care is needed and becomes a viable option. Although the regulations do not explicitly reference palliative care, they do center on providing comfort.
Implementing a Palliative Care Strategy
Evidence-based clinical standards for patients with advanced dementia, including the provision of end-of-life care, have yet to be established. However, nursing homes can develop their own best practices and, in doing so, should consider using the Alzheimer’s Association’s practice recommendations on dementia care.16 Placing palliative care on par with other types of nursing home care requires consideration of the following recommendations:
• It is essential for the organization’s leaders to commit to palliative care; this includes the owners or board of directors, administrator, medical director, and director of nursing. The rationale for emphasizing palliative care must be explained to direct care staff at orientation and in-services. All staff should receive training on palliative care in general and on specific interventions for residents with advanced dementia.
• Care plan meetings should be held to provide families and other decision makers with opportunities to discuss palliative and/or end-of-life care for their loved one. If the primary goal of care for an individual will be providing comfort rather than using life-sustaining measures, advance directives and personal wishes must be communicated and conspicuously documented. Referral to hospice should be considered when the resident’s prognosis is ≤6 months.
• To enable a palliative care philosophy to take hold within a nursing home, desirable outcomes should be identified and progress measured. Satisfaction surveys and quality improvement processes can be used to track outcomes. For example, among residents with advanced dementia, the rates of hospitalization and use of psychotropic medications should decrease, whereas reliance on hospice should increase. Once implementation of the palliative care program is under way, successes and areas identified as needing improvement should be routinely shared with staff members.
• Surveyors need to be informed of the organization’s commitment to providing palliative care for residents who have advanced dementia. Regulations can be cited to justify use of palliative care as long as the plan of care, policies and procedures, and advance directives all clearly document resident-specific goals for comfort.
Take-Home Message
LTC regulations can be successfully used to uphold comfort-focused practices for residents with life-limiting conditions such as dementia. In this population, burdensome, painful, and defensive interventions can be avoided, especially in the advanced stages of disease. When comfort is documented as the resident’s primary goal of care, state and federal regulations underscore the importance of supporting preferences, dignity, and quality of care based upon individualized needs.
Dr. Forrest is principal consultant in geriatrics, dementia, palliative, and end-of-life care, and LIFE Institute nurse specialist, Rainbow Hospice and Palliative Care; Dr. Long is co-director and Ms. Alonzo is director of dementia programs, Palliative Care for Advanced Dementia, Beatitudes Campus Health Care Center, Phoenix, AZ; Mr. Kuhn is community educator, LIFE Institute for Learning, Rainbow Hospice and Palliative Care; and Ms. Frazier is vice president, LIFE Institute for Learning, Quality Assessment/Performance Improvement (QAPI) and Compliance, Rainbow Hospice and Palliative Care, Mount Prospect, IL. Dr. Long is also principal,Capstone Healthcare Group.
Dr. Forrest and Mr. Kuhn received a research grant from the Retirement Research Foundation for this study; the remaining authors report no relevant financial relationships.
References
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