Clinical Progress Note: Addressing Prognosis in Advanced Dementia

Advanced dementia (AD) is a serious terminal illness. Some features of AD include significant memory deficits (inability to recognize family members), inability to ambulate, very limited verbal communication, and needing assistance with all activities of daily living.¹ AD carries a six-month mortality of 25% and a median survival of 1.3 years.¹

Despite a limited life expectancy, patients with AD face increasingly significant symptom burden and use of burdensome interventions² near the end of life. Among the most common interventions hospitalists routinely navigate during a hospitalization is tube feeding for enteral artificial nutrition, which has not been shown to prolong survival, improve quality of life, decrease risk of aspiration pneumonia, or decrease the risk of pressure ulcers.^3,4 Recent data show that rates of hospitalizations in the last 90 days of life, especially in the last three days of life, are increasing.⁵ These late transitions can have significant negative impact on family perceptions of quality of care, including not being treated with respect, receiving care inconsistent with goals, receiving inadequate communication about care decisions, and not being fully informed of the medical conditions.⁶

Therefore, hospitalization in AD, especially a readmission, indicates a critical change in a patient’s illness, marking an opportune time to have discussions on prognosis and improve care at the end of life. While determining and sharing prognosis can be challenging in the setting of many chronic diseases, resources exist to help clinicians share prognosis in AD and understand the goals of care for each patient.⁷ The aim of this paper is to assist hospitalists in addressing prognosis in the setting of AD. We identify and present key knowledge and recommendations from relevant articles identified from a hand-search of articles, published in 2018, from leading palliative care journals, as well as a MEDLINE search from 2003 through December 2018 using the key words “dementia” and “prognosis.” Final presented articles and recommendations were determined based on scientific rigor and relevance to hospital-based care of patients with AD.

For a myriad of reasons, most AD caregivers do not receive adequate information on the complications of dementia or prognosis.² Conversations that provide prognostic estimates and aim to understand the goals, preferences, and values of AD patients and their surrogates can help in providing goal-concordant care. A prospective study of nursing-home patients with AD showed that having goals of care discussions was strongly associated with surrogates’ likelihood of estimating a life expectancy of less than six months in AD patients.⁸ Having this perception was associated with a lower likelihood of patients with AD undergoing burdensome interventions such as hospitalizations, parenteral therapy, venipuncture, feeding tube, or urinary catheterization.⁸ To help improve goal-concordant care, it is important that hospitalists be prepared to have prognostic conversations with patients and their caregivers.