Palliative Care Practice for Advanced Dementia: Regulatory Friend or Foe? : Page 2 of 2

January 16, 2012

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.



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