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.
A Role in Providing End-of-Life Care
Primary care providers can play a significant role in improving quality of life for their end-stage patients. Optimal end-of-life care begins with information for patients and their caregivers about the expected progression of their illness. Family members may not know, for example, that dementia is considered a terminal illness.
During office visits with patients who have end-stage dementia and their family members, the provider should7,17-20:
• Review the expected course of dementia. Providers can help the family understand what to expect in the coming months. Hearing that the patient is in the late stage of the disease can be helpful to family members. Increased functional dependency (eg, dressing, bathing, toileting) and recurrent infections (with risk increased by dysphagia, apraxia, and reduced mobility) are likely.7,17
• Offer caregivers sources of emotional support. Families who receive such support are better able to provide care in the home, putting off the need for institutionalization. In addition to caregiver support groups, the Alzheimer’s Association offers a 24-hour helpline number: (800) 272-3900. The hospice team will also provide emotional and spiritual support.
• Remind caregivers that weight loss is expected in patients with end-stage dementia. Difficulty swallowing and other eating problems are common in patients with end-stage dementia. Tube feeding appears to offer neither survival advantage, nor improved nutritional status, nor improvement in quality of life in dementia patients, compared with hand feeding.18 Tube feeding has also been linked with increased risk of aspiration pneumonia. Yet surveyed hospital physicians often express the belief that feeding tubes have benefits not supported in evidence-based literature; they have also been shown to underestimate the 30-day mortality rate in dementia patients with feeding tubes.19 In some states, up to 44% of nursing home residents with dementia reportedly die with a feeding tube in place.7
Because the decision to implement enteral tube feeding is often based on emotional rather than factual data, it is important to discuss this practice with the family in advance of a crisis. Once hospitalized, patients with dementia are likely to be offered feeding tube insertion. The Alzheimer’s Association recommends a conscientious program of hand feeding rather than tube feeding.12 A brochure addressing this and other end-of-life decisions can be downloaded from the association’s Web site and shared with patients’ decision makers (www.alz.org/national/documents/brochure_endoflifedecisions.pdf).12
• Describe the burdens associated with hospitalization for patients with dementia. Adjusting to new routines and new caregivers who do not understand patients’ needs can trigger significant anxiety and accelerate their decline. Treatments that cause discomfort may agitate them. Patients with dementia who are hospitalized have been found to lose weight and experience loss of function in the activities of daily living—developments that are not reversed after hospital discharge.21
Nursing home residents may include a “do not hospitalize” order in their advance directives. For patients who would ordinarily be admitted for treatment of an infection, clinicians can consider less invasive therapy without moving the patient from where he or she lives. Oral antibiotics have been shown as effective as parenteral agents for treating infections in patients with dementia.21
• Explain why a do-not-resuscitate (DNR) order is advisable. The absence of a DNR directive is one of the strongest predictors of high utilization of medical care near the end of life.20 Contrary to perceptions families may have developed from watching television, the CPR survival rate for non–community-dwelling elderly persons is only 1% to 2%, and those who survive do so only briefly, if not with severe disability.22 Nor does CPR begin and end in the field; it is important for the provider to clarify that the CPR process starts at home but is concluded in the ED—or possibly in the ICU, with the patient on a ventilator. Thus, the choice of CPR should be portrayed as an option that is likely to be futile and that may actually increase a dying patient’s distress.
Many families struggle with the notion of withholding any intervention, no matter how small the potential benefit; they fear that the patient with a durable DNR order will receive limited care—or no care. It is important for the provider to clarify that “do not resuscitate” does not mean “do not treat.” In fact, families can still activate emergency medical services if they need help. But instead of performing CPR, the EMT will administer aggressive comfort measures (eg, pain management, hydration). Being with patients as natural death occurs may be the most important assistance family members can provide.
The health care provider plays an invaluable role in educating and supporting families who seek a good death for a loved one. Most elderly patients do not want aggressive end-of-life care; they and their families welcome discussions and strategies that will help them maintain control during the course of a terminal illness.
Many patients are often candidates for hospice care months sooner than clinicians realize. Early referral to hospice care will ensure that their physical needs—and the family’s emotional needs—are met in the optimal setting.
1. American Medical Association, Program on Aging and Community Health. Practical Guide for the Primary Care Physician on the Diagnosis, Management and Treatment of Dementia. Chicago, IL: American Medical Association; 2000.
2. Farias ST, Mungas D, Reed BR, et al. The measurement of everyday cognition (ECog): scale development and psychometric properties. Neuropsychology. 2008;22(4):531-544.
3. Boustani M, Peterson B, Hanson L, et al. Screening for dementia in primary care: a summary of the evidence for the US Preventive Services Task Force. Ann Intern Med. 2003;138(11): 927-937.
4. US Preventive Services Task Force. Screening for dementia: recommendation and rationale. Ann Intern Med. 2003;138(11):925-926.
5. Magaziner J, German P, Zimmerman SI, et al; Epidemiology of Dementia in Nursing Homes Research Group. The prevalence of dementia in a statewide sample of new nursing home admissions aged 65 or older: diagnosis by expert panel. Gerontologist. 2000;40(6):663-672.
6. Jakob A, Busse A, Riedel-Heller SG, et al. Prevalence and incidence of dementia among nursing home residents and residents in homes for the aged in comparison to private homes [in German]. Z Gerontol Geriatr. 2002;35(5):474-481.
7. Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004;19(10):1057-1063.
8. Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164(3):321-326.
9. Alzheimer’s Association. 2009 Alzheimer’s Disease Facts and Figures. www.alz.org/national/documents/report_alzfactsfigures2009.pdf. Accessed September 24, 2009.
10. Wennberg JE, Cooper MM. Dartmouth Atlas of Health Care. Washington, DC: AHA Press; 1999.
11. Forbes S, Bern-Klug M, Gessert C. End-of-life decision making for nursing home residents with dementia. J Nurs Scholarsh. 2000;32(3):251-258.
12. Alzheimer’s Association. End-of-Life Decisions: Honoring the Wishes of the Person With Alzheimer’s Disease. www.alz.org/national/docu ments/brochure_endoflifedecisions.pdf. Accessed September 23, 2009.
13. Mitchell SL, Kiely DK, Miller SC, et al. Hospice care for patients with dementia. J Pain Symptom Manage. 2007;34(1):7-16.
14. Hospice Association of America. Hospice facts and statistics (2008). www.nahc.org/facts/Hospice Stats08.pdf. Accessed October 26, 2009.
15. Mitchell SL, Morris JN, Park PS, Fried BE. Terminal care for persons with advanced dementia in the nursing home and home care settings. J Palliat Med. 2004;7(6):808-816.
16. Centers for Medicare and Medicaid Services, US Department of Health and Human Services. Medicare Hospice Benefits (2008). CMS Publication No. 02154. www.medicare.gov/publications/Pubs/pdf/02154.pdf. Accessed October 26, 2009.
17. Mitchell SL, Kiely DK, Hamel MB, et al. Estimating prognosis for nursing home residents with advanced dementia. JAMA. 2004;291(22):2734-2740.
18. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev. 2009;(2): CD007209.
19. Shega JW, Hougham GW, Stocking CB, et al. Barriers to limiting the practice of feeding tube placement in advanced dementia. J Palliat Med. 2003;6(6):885-893.
20. Haller IV, Gessert CE. Utilization of medical services at the end of life in older adults with cognitive impairment: focus on outliers. J Palliat Med. 2007;10(2):400-407.
21. Volicer L, McKee A, Hewitt S. Dementia. Neurol Clin. 2001;19(4):867-885.
22. Mohr M, Bömelburg K, Bahr J. Attempted CPR in nursing homes: life-saving at the end of life? [in German] Anasthesiol Intensivmed Notfallmed Schmerzther. 2001;36(9):566-572.