What Are Appropriate Palliative Interventions for Patients With Advanced Dementia?

Advance Care Planning

One of the most important aspects when caring for patients with dementia is to plan for continued disease progression. Advance care planning should occur as early as possible in the course of the illness, preferably while patients maintain decision-making capacity for stating their values and preferences in order to help guide decisions when they become unable to speak for themselves. Specific aspects of care, such as artificial nutrition and hydration, intubation, cardiopulmonary resuscitation, and other common medical interventions at the end of life, should be explored with patients and their family members and documented in advance health care directives. Gaster and colleagues have developed a dementia-specific advance directive to help address the changes in goals of care that patients may want as the disease progresses.

Taking a step back from the specific treatments and documenting overall values and goals, including whether the patient views comfort and quality of life as an overriding priority, may be more helpful for surrogate decision makers when asked to weigh the risks and benefits of the many interventions frequently performed on patients with advanced dementia. This approach also highlights the importance of documenting a trusted designee to make decisions when an individual loses either medical or financial capacity through the use of a durable power of attorney for both health care and financial matters. At the same time, capacity is not all-or-nothing and is both decision and time specific. Patients with dementia can still participate in decision making and provide meaningful input for end-of-life preferences.

Advance care planning may be difficult in the context of dementia as many patients may not understand what living with severe dementia will look like. There is mixed evidence for using video decision aids to communicate goal-directed care for patients with dementia. In one study, family decision makers who received a goals of care video decision aid and structured care plan meeting reported better quality of communication, better end-of-life communication, and greater concordance with clinicians on goals of care. Furthermore, patients in the intervention group experienced fewer hospital transfers in addition to having more palliative care content in their treatment plans and higher use of the Physician (or Medical) Orders for Life-Sustaining Treatment order set. Another study found that nursing home residents whose health care proxies watched an advance care planning video were more likely to have documented directives to forgo artificial nutrition. However, the video intervention did not have an effect on preferences for level of care, directives to withhold intravenous hydration, or burdensome treatments.

Patient preferences are often not documented early in the disease, despite the anticipated loss of capacity that occurs with dementia. One reason for this is that family members often may not realize the importance of discussing advance care plans with their loved one until it is too late to have the discussion. When talking with family members of individuals with advanced dementia, it is important to frame these decisions in the context of having a terminal illness, because family members of nursing home residents with dementia who perceive that the patient’s prognosis is poor have reduced likelihood of receiving burdensome interventions in the last three months of life.

Hospice Enrollment

Hospice services should be considered for individuals with end-stage dementia. Hospice enrollment for individuals with end-stage dementia is associated with improved patient and caregiver outcomes compared to usual care. Hospice enrollees are more likely to have better pain management and fewer hospitalizations during the last 30 days of life than those not receiving hospice services. They are more likely to receive scheduled opioids for pain and symptomatic treatment for dyspnea, as well as have fewer unmet needs during the last seven days of life. Individuals with dementia are significantly more likely to die in their location of choice and less likely to die in the hospital if enrolled in hospice. Furthermore, caregivers of individuals enrolled in hospice because of dementia also have greater satisfaction with end-of-life care.

The current National Hospice and Palliative Care Organization (NHPCO) guidelines for hospice eligibility are of limited accuracy in predicting death within six months. Nevertheless, it is important to note that effective use of hospice inevitably means that many patients who are referred will survive beyond six months and that appropriateness for hospice is not based on actual survival, but rather a reasonable expectation that survival will be less than six months if the disease follows its usual course. It would therefore be appropriate to refer to hospice individuals with advanced dementia who develop pneumonia, febrile episodes, or eating problems, because these are markers of a poor six-month prognosis.