COMMENTARY

Triggering Palliative Care in Late-Stage Dementia

Betty R. Ferrell, PhD, RN

Disclosures

April 09, 2019

Why Do We Delay Palliative Care for Patients With Dementia?

Palliative care has much to offer patients with dementia.[1] When it comes to palliative care services, we are finding that "the earlier, the better" applies to many diseases. Yet for patients with late-stage dementia, palliative care consultations are rare[2] and access is limited.

Many patients with late-stage dementia are residents of long-term care facilities, where pain, feeding difficulties, and shortness of breath, all of which are symptoms amenable to palliative care, are common. Patients with dementia nearing death are often admitted to acute care hospitals, at which time family members may struggle with decisions about life-sustaining treatments for their loved ones.

To find out whether it would be feasible and useful for hospital admission to serve as a trigger for a palliative care consultation, a pilot trial[3] was conducted with 62 pairs of patients with late-stage dementia and their primary family decision makers. Dyads were randomly assigned to specialty palliative care consultation or usual care for the duration of the patient's hospitalization. Patients in the treatment group received protocolized palliative care interventions while hospitalized, and family members received telephone support from a palliative care nurse practitioner for 2 weeks after discharge.

Specialty palliative care consultation for patients with late-stage dementia, prompted by hospitalization for acute illness, proved to be feasible. Although the intervention did not reduce 60-day hospitalization rates or emergency department visits, compared with usual hospital care, triggered palliative care consultation was effective in such important areas as advance directives, hospice care referrals, discussions about prognosis, and decisions made by families to avoid future hospitalizations.

Viewpoint

This study targets one of the most understudied populations in palliative care: patients with late-stage dementia. Some very real advantages to patients and families were seen when these patients had access to specialty palliative care services. With longer-term follow-up, it is likely that outcomes would be improved as well.

In the ever-growing field of palliative care, triggers can serve as inflection points to improve the care of patients with serious chronic illnesses. This timely pilot study recognized the unique needs of the late-stage dementia population, including the need for improved transitional care when these patients are returned to long-term care settings or to home. Palliative care can address critical patient and family caregiver concerns, promote necessary, yet difficult discussions, and respect the wishes of people dealing with late-stage dementia.[4,5,6]

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