An elderly patient, Mr. Jones, presents for his routine primary care office visit. His wife, who cares for him at home, reports that his dementia is growing worse. He is nonverbal, is having difficulty swallowing, and has lost 10% of his body weight in the past six months. He was recently hospitalized for treatment of aspiration pneumonia and experienced a marked decline during his hospital stay.
What action on the provider’s part would be most helpful for Mr. Jones and his family during this visit?
a) Order a swallow study and a chest x-ray.
b) Evaluate Mr. Jones for depression.
c) Help his family to plan for a comfortable death in the setting of their choosing.
The answer is, of course, “c.” Broaching this topic can be uncomfortable and time-consuming. But for a number of compelling reasons, providers should be communicating with their patients regarding their wishes in the final months of life.
Mr. Jones is at very high risk for dying in the coming six months; he qualifies for hospice care today. Timely hospice care will include physical and emotional support for his family and will allow Mr. Jones to die comfortably in the location that he and his family prefer.
Dementia and End-of-Life Care
Dementia was first identified as a terminal illness in 2000, when the American Medical Association (AMA) issued the Practical Guide for the Primary Care Physician on the Diagnosis, Management and Treatment of Dementia.1 This guide, in addition to more recently published literature,2,3,4 can assist primary care providers in diagnosing, managing, and treating patients with dementia from diagnosis to end of life. The AMA guide recommends that patients with dementia be offered comfort-focused care early in the course of their disease.1
Among recently admitted nursing home residents, it has been shown, about 48% have dementia.5,6 Even in this setting, patients with dementia are often not considered terminally ill.7 In one study of patients with advanced dementia who were admitted to a nursing home, only 1% were perceived by the facility staff to have a life expectancy of six months or less. In reality, 71% of those patients died within six months of admission.8 Alzheimer’s dementia, specifically, is the fifth leading cause of death among persons older than 65,9 yet even medical professionals often fail to recognize this condition as a terminal illness.
Although some 80% of Americans say they want to die at home, more than 70% die in a facility. Additionally, nearly 30% of Medicare enrollees are admitted to intensive care during their terminal hospital stay.10 Families of terminally ill patients, especially those with dementia, often make poor end-of-life decisions for several reasons: They do not understand the natural progression of the patient’s illness; they are unaware of the benefits and burdens of available treatments; and their decisions are often colored by the burden of guilt.11
Without essential conversations with the health care provider and an individualized plan in place, patients and their families will continue to seek help in emergency departments (EDs) and hospitals for treatment of possibly manageable symptoms: pain, fever, dyspnea, constipation.8 Many members of this vulnerable population will submit to aggressive medical interventions (eg, respirators, tube feeding, IV hydration, CPR12), when what they really require is high-touch comfort care.1
The Choice of Hospice
Hospice is a viable option for patients with dementia. Among family members of hospice care patients, 75% are very satisfied with that care.13 Yet according to 2008 statistics from the Hospice Association of America (HAA),14 only one in 10 patients who qualify for hospice care actually choose it. In one study, 10% of a group of recently admitted nursing home residents with dementia were perceived to have less than six months to live, but only 5.7% were referred to hospice.15 The HAA recommends that health care providers who care for terminally ill patients in clinical facilities open a dialogue with patients and family caregivers about the option of hospice.14
Once a patient is referred and accepted, the hospice team can educate the family about the benefits and burdens of end-of-life treatments. Together, they can formulate a plan and put into place resources that may be needed if the patient begins to deteriorate rapidly. Thanks to the Medicare Hospice Benefit16 (which provides specialized services in addition to members’ regular Medicare Part A benefits), oxygen can be ordered without the patient’s meeting oximetry specifications, and emergency medications may be kept in the patient’s home for future need. Patients who require inpatient hospice care will be transferred to a facility owned by or under contract with the Medicare-approved hospice program.