Advanced dementia and respiratory failure

The patient

A 95-year-old woman with a history of Alzheimer's disease and vascular dementia without behavioral disturbance, chronic heart failure with preserved ejection fraction, and obstructive sleep apnea adherent to nocturnal continuous positive airway pressure presented from a skilled nursing facility for an acute cough. At baseline, she was dependent for basic and instrumental activities of daily living (ADLs), was incontinent of bladder and bowel, had limited speech of two to four words, and was nonambulatory. Examination and vital signs were within normal limits. Rapid COVID-19 antigen testing and a chest X-ray were negative.

A week later, in the skilled nursing facility, she developed hypoxia to 88% on room air and required 2 L of supplemental oxygen per minute. Examination was notable for rhonchi in the upper lobes. She was observed to choke and cough when taking her medications with water.

The patient's health trajectory and goals of care were discussed with her surrogate decision-maker, prior to considering admission. The surrogate stated that avoiding hospitalization was most in line with the patient's values, and the patient was referred for hospice care. Antibiotics were not prescribed due to the surrogate's concern about Clostridioides difficile.

The diagnosis

The diagnosis is acute hypoxic respiratory failure secondary to aspiration pneumonia in the setting of advanced dementia. Dementia, also called major neurocognitive disorder, is a progressive and irreversible condition caused by organic disease of the brain from various pathophysiologic mechanisms. By 2050, an estimated 150 million people worldwide will have dementia. As dementia advances, ability to perform instrumental ADLs, such as shopping, meal preparation, household cleaning and maintenance, medication arrangement, finance management, communication via technology, and transportation arrangement, and later basic ADLs, such as dressing, grooming, hygiene, eating, ambulation, toileting, and continence, is impaired.

Research has shown that individuals who die within a year of developing advanced dementia are often hospitalized, given invasive treatments, and experience suboptimal management of symptoms, while infrequently receiving hospice referrals. Clinicians and caregivers frequently do not recognize patients' mortality risk. To have an honest conversation regarding prognosis with the surrogate, clinicians must be well versed in dementia staging.

The Functional Assessment Staging Tool (FAST) is an alphanumeric scale used to stage dementia from 1 to 7, with higher stages indicating greater severity. It relies on obtaining a baseline functional status, including ADLs, from care partners. Persons with higher FAST stages and comorbidities such as heart failure have worse prognosis. Patients meet Medicare's criteria for hospice eligibility (i.e., >50% likelihood of death in six months) if they are FAST stage 7c or greater and have had one of the following conditions in the past 12 months: infection (aspiration pneumonia, pyelonephritis, or septicemia), multiple pressure injuries (stages 3 to 4), recurrent fever despite antibiotic treatment, or weight loss of 10% of more in the past six months (or albumin level <2.5 g/dL). This patient was FAST stage 7c (severe dementia) with aspiration pneumonia and thus met hospice criteria.

Pearls

• Dementia, also called major neurocognitive disorder, is staged using the FAST scale, which relies on baseline functional status to predict health trajectory.
• The Medicare hospice criteria help identify patients with limited life expectancy, which can facilitate goals-of-care discussion and decisions that honor patients' wishes and avoid unwanted hospitalizations.