Medical Care for Patients with Dementia
ABSTRACT & COMMENTARY
Source: Morrison RS, et al. Survival in end-stage dementia following acute illness. JAMA 2000;284:47-52.
An estimated 1.8 million people are in the final stages of dementia and are unable to recognize family, dependent in activities of daily living, unable to communicate, and experience repeated infections and other complications. Data from nursing homes and hospice care suggest that survival for patients with end-stage dementia following an acute illness is limited. Therefore, if prognosis is poor, palliation of symptoms and enhancement of comfort may be more important to the patient than the application of burdensome interventions directed at life prolongation or cure.
This study by Morrison and colleagues was a six-month prospective cohort study that examined survival for patients with advanced dementia who were hospitalized with either pneumonia or hip fracture. The study compared the care these patients received with that of cognitively intact adults with the same diagnoses.
Patients older than 70 years who were admitted to a large hospital in New York with diagnoses of hip fracture or pneumonia over an 18-month period were eligible for the study. Patients were excluded if they had multiple internal injuries, a previous fracture in the affected hip, or a known diagnosis of cancer that was not considered cured or in remission, were non-English speaking, or were identified more than 48 hours after admission.
Patients with hip fractures or pneumonia were eligible for inclusion if they were cognitively intact or had end-stage dementia. Patients who scored 18 of 24 on the telephone version of the Mini-Mental State Exam were eligible for enrollment in the cognitively intact group. Patients who scored less than 18 and whose functional/cognitive status was classified as stage 6 or 7 (severe to very severe dementia) on the Global Deterioration Scale were enrolled in the end-sage dementia group. Patients who score 6 or 7 on the Global Deterioration Scale are dependent in all activities of daily living, display sleep-wake cycle disturbances, and cannot remember the names of close relatives.
Of the 235 eligible patients, 216 agreed to participate (119 with pneumonia, 39 cognitively intact/80 end-stage dementia, and 109 with hip fracture, 59 cognitively intact/38 end-stage dementia). Median age was 84 years for hip fracture patients and 86 years for pneumonia patients. Most patients were women (81% of hip fracture patients, 61% of pneumonia patients). End-stage dementia patients with pneumonia or hip fractures were significantly older (four and six years older, respectively) than cognitively intact patients. Dementia patients were also more likely to reside in nursing homes (82% vs 5% with hip fracture and 63% vs 55% with pneumonia).
At six months, 42 of 80 (53%) pneumonia patients with end-stage dementia had died compared to five of 39 (13%) cognitively intact patients. Twenty-one of 38 hip fracture patients (55%) with end-stage dementia had died within six months compared to seven of 59 cognitively intact hip fracture patients (12%). Fifty-four percent of the end-stage dementia patients who died were readmitted to the study hospital within six months of their index hospitalization compared with 58% of the cognitively intact patients who died.
Additional factors associated with decreased survival among hip fracture patients included a high Charlson comorbidity index score, and being unable to walk or transfer without total assistance. Pneumonia patients with high pneumonia severity scores were also at increased risk of death. End-stage dementia patients were significantly more likely to receive a third-generation cephalosporin or antipseudomonal penicillin (43% vs 13%).
There was no significant difference in the number of burdensome procedures received by end-stage dementia and cognitively intact patients. However, end-stage dementia patients were significantly more likely to be restrained. In addition, hip fracture patients with end-stage dementia received a mean of 1.7 mg/d of morphine sulfate equivalents compared with 4.1 mg/d for cognitively intact patients (P < 0.001) and no end-stage patient received premedication prior to being turned, transferred, or repositioned. Only nine of the 38 hip fractured patients with end-stage dementia received a standing order for analgesics.
Finally, no documentation was found regarding discussions about goals of care, or decision to withhold or withdraw life-sustaining treatment for 106 of the 118 end-stage dementia. Only two patients with end-stage dementia were discharged to a nursing home with hospice care. Decisions were made to forego life-prolonging therapies for eight end-stage dementia patients (7%) compared to one cognitively intact patient (1%). These decisions were made only after patients were comatose or hypotensive in the setting of multisystem organ failure and death appeared imminent.
COMMENT BY CLAUDIA a. ORENGO, MD, PhD
Morrison et al have presented a well-designed and controlled study finding that end-stage dementia patients who received routine hospital care for pneumonia or hip fracture have a 4-fold increase in six-month mortality compared with elderly cognitively intact adults with the same diagnoses. Despite this high mortality, they find almost no differences in the care end-stage dementia patients received compared with cognitively intact adults, and no evidence that palliative care was undertaken, either in conjunction with or instead of, life-prolonging measures for dementia patients. These findings suggest that advanced dementia is not viewed as a terminal diagnosis by physicians or families, and perhaps there is a lack of awareness of the poor short-term prognosis for these patients.
Patients with end-stage dementia are unable to communicate their preference for care, the presence of pain or discomfort, or the need for analgesia. Two of the most alarming findings of this study were that end-stage dementia patients with hip fractures received significantly less pain medication than cognitively intact patients, and end-stage dementia patients did not receive premedications prior to being turned, repositioned, or transferred. Only nine of 38 hip fracture patients with end-stage dementia received a standing order for analgesia. Also of concern was that there did not appear to be consideration of limiting burdensome interventions (e.g., phlebotomy, catheter insertion) in patients with end-stage dementia and that no palliative care plans or discussions to forgo life-sustaining therapy were documented.
A few limitations exist that deserve discussion. First, this study was conducted in only one New York Hospital and may not be generalizable to other institutions or states. Morrison et al relied on medical records to determine whether conversations about goals of care occurred between families of end-stage dementia patients and the physician(s). It is possible that these discussions occurred and that families opted for standard medical care. It also is possible that upon readmission, families of end-stage dementia patients opted for palliative care, and hence the higher mortality rate. However, 54% of the end-stage dementia patients who died were readmitted compared to 58% of the cognitively intact patients who died, suggesting no difference in whether cognitively intact or end stage dementia patients were to be re-hospitalized when acutely ill.
Individuals with end-stage dementia are dependent in all activities of daily living, cannot communicate, and cannot remember the names of their closest relatives or their spouse. They are unable to express their wishes for medical interventions, their pain or discomfort, or the need for analgesics. It would be fair to say that they have a compromised quality of life. Given the burdens of treatment associated with the two common conditions in elderly individuals—pneumonia and hip fractures, and the high mortality observed following these illnesses—we should all be more attentive to decreasing pain and suffering and minimizing burdensome interventions in individuals with end-stage dementia. We should not forego quality of life for quantity of life in patients with end-stage dementia anymore than we should in patients with terminal cancer.
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