Clinical Progress Note: Addressing Prognosis in Advanced Dementia

Offering a clinical prognosis involves components of foreseeing (estimating prognosis) and foretelling (sharing prognosis).⁹ Foreseeing prognosis in AD can be complex due to the highly variable but slow, dwindling clinical course of AD. As a practical matter, determining if a patient has a six-month prognosis is most helpful as eligibility for hospice services may allow for a discharge to a supportive home setting instead of a transfer to an institution.¹⁰ An evidence-based clinical prediction rule, the Advanced Dementia Prognostic Tool (ADEPT, Appendix Table),¹¹ can be used to estimate prognosis by a composite of 12 risk factors in nursing-home patients. Although the consensus-based National Hospice and Palliative Care Organization (NHPCO) guidelines for Medicare hospice eligibility¹² (Table) do not perform well in predicting individual mortality, they are used as criteria for hospice enrollment. Given the variability of course of AD, evaluating the mortality risk for acute illnesses leading to hospitalization, like pneumonia or hip fracture, can further help estimate prognosis. The website, www.eprognosis.com, combines various prediction tools to help estimate prognosis. Although using these tools can often help clinicians satisfy the entry requirements to offer hospice, the ADEPT tool and the NHPCO criteria both perform poorly in discriminating those who will or will not actually die in six months. ADEPT, as a prognostic tool, has not yet been validated for community-dwelling patients. Clinicians should exercise caution in making a highly specific estimate of survival in AD, but can and should communicate the expected decline in function over time.

Having goals of care conversations and sharing prognosis has many benefits. A large multistate cohort study showed that having goals of care conversations among patients with terminal cancer was associated with less use of intensive care units, mechanical ventilation, and cardio-pulmonary resuscitation.¹³ Caregivers may also benefit from prognosis discussions through identifying resources to care for the patient at home and by potentially limiting their risk of major depressive order and regret, common among those witnessing patients undergoing aggressive treatment at the end of life.¹³ How to share prognosis can be challenging; however, tools such as the Serious Illness Conversation Guide¹⁴ can provide step-by-step guidance for providers. The key aspects of the guide are asking permission, assessing illness understanding, and exploring goals, fears, worries, and tradeoffs.

Before exploring goals, it is helpful to explain the serious illness by using “I wish,” “I worry,” and “I wonder” statements such as “I wish I had better news for you; your mom’s dementia has progressed given the recent complication of aspiration,” “I worry that she will not be able to eat on her own and will develop another serious infection very soon,” or “I wonder whether it is a good time to talk about what your mom would want if she cannot eat on her own.”

An example of an effective conversation about artificial nutrition and hydration with a surrogate of a patient with AD with recurrent aspirations may include the following elements:^14,15