Hospice and End of Life Symptoms

Discussion of Hospice and End-of-Life Symptoms in FTD
Dementia Team (Maribeth Gallagher, DNP, Amy McLean, ANP, Rebekah Wilson, MSW)
Hospice of the Valley, Phoenix, Arizona

An extensive search of multiple databases reveals an absence of published literature to guide clinicians in identifying the signs and symptoms associated with end-of-life in patients with some form of frontotemporal degeneration (FTD). Clinicians struggle with prognosticating the last six months of life in persons with FTD and lack specific criteria for appropriately initiating referrals for hospice services. Consequently, anecdotal evidence suggests that patients with FTD and their families may be denied hospice services or have services delayed until the last weeks of life. This raises a critical question as to how to enhance access to palliative and hospice supportive services for patients with FTD and their families to ensure that they receive the same expert end-of-life care afforded those with more common forms of dementia such as Alzheimer’s disease (AD).

In an attempt to initiate discussions identifying the possible features associated with end-of-life in persons with FTD, Hospice of the Valley’s dementia team invited several FTD clinicians and colleagues across the U.S. to share documented changes they have observed over the last six months of life in their patients with FTD. A synthesis of these expert opinions reveal signs and symptoms that are believed to serve as “red flags” to signal a final decline towards death, which may help clinicians initiate referrals for patients and families to receive more timely hospice services.

On September 19, 2011, Hospice of the Valley’s dementia team members shared the following PowerPoint presentation to guide AFTD’s continuing education teleconference for FTD support group leaders addressing the issue of hospice care for persons with FTD and their families.

Hospice and FTD Presentation