Hospitalization is a choice. That may sound surprising coming from a health care provider, but the fact is that hospitalization is not a necessity, especially for end-of-life patients with cognitive impairment. A trip to the hospital can be stressful — and downright torturous — for someone with Alzheimer’s disease or another form of dementia — and almost as bad for the caregiver who accompanies them.
Imagine being a 90-year-old person with dementia, strapped to a stretcher and whisked away to the emergency room. Put yourself in their shoes. Your brain doesn’t process things as it should. You’re easily disoriented, and everything seems chaotic and confusing. Hospitals and emergency rooms, especially, are not well-designed for those with dementia. Staff is not always properly trained on how to communicate and avoid things that would distress or agitate you, small actions like repositioning in bed or placing an IV. But what choice was there? No one — including the primary care doctor, patient, or caregivers — had a plan in place. Conversations about early discharge and hospice referrals didn’t occur in a timely manner. No one talked about what to do before things got to this place.
Hospital stays for those with dementia are burdensome, traumatic, and associated with worse end of life outcomes. A person with dementia spends an average of 23 days in a hospital or skilled nursing facility, compared to just five days for the Medicare population as a whole, according to a 2012 study. Hospitalization is common for those with advanced dementia at the end of life, but many cases, as high as 75% of them, are avoidable. The question is how?
Healthcare providers should routinely counsel families on their priorities and preferences for when a loved one with dementia becomes acutely ill. Alternate, individualized pathways for those with dementia can be formulated by experts in the field, such as social workers and geriatricians, in partnership with families.