ARTICLE IN BRIEF
A Dutch retrospective study reported persistent pain, agitation, and shortness of breath in the last week of life among dementia patients. Experts discuss the difficulties of symptom management and end-of-life care in this patient population.
Studies from all over the world continue to point to the high symptom burden that persists even at the very end of life for patients with dementia. Regardless of differences in health care systems, these patients pose a universal challenge because of their unreliable cognitive state and inability to express care wishes or give informed consent.
A retrospective study from the Netherlands published in the April issue of the Journal of Pain and Symptom Management, led by Jenny van der Steen, PhD, an associate professor at the VU University Medical Center, analyzed a group of 330 nursing home residents with dementia in their last week of life. They found that the rate of patients experiencing pain, agitation, and shortness of breath remained relatively high (between 35 and 52 percent).
These findings, she told Neurology Today, reinforce the notion that dementia patients continue to experience high burden of symptoms, and thus lower quality of life, in their final days — even when they are receiving opioids or pain medication.
“We have nursing home physicians on staff in the Netherlands so they should theoretically be able to respond easily to an increased level of symptoms, but I don't think we're doing much better than a system where there is a general practitioner and nurses on the staff who are monitoring the patients,” Dr. van der Steen added. This may also mean that dosing of opioids and other pain medications is not optimal in this group of individuals, she said.
In their analysis, the three most common direct causes of death were dehydration/cachexia (38 percent), cardiovascular disorder (19 percent), and respiratory infection (18 percent). Individuals with respiratory infections reported the highest symptom burden. Also, on the day of death, the rate of palliative sedation reported in this study — 21 percent — was very high, the study author noted.
“After we did some additional analysis, we also found that pain and agitation were especially associated with lower quality of life, while shortness of breath was not. We wonder if perhaps the staff responds easily when you can see someone is short of breath,” versus pain and agitation which may be harder to see or treat, said Dr. van der Steen.
The main takeaway from the work, she said, is that symptom levels must be monitored routinely in late-stage dementia patients. Especially when you see a patient is declining, “you should monitor symptoms closely because you can expect that the number of symptoms will continue to increase. The goal is to do a better job of anticipating symptoms.”
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Commenting on the study, Joseph Shega, MD, regional medical director of VITAS Innovative Hospice Care, said he believes the findings are comparable to the US “in that many patients with dementia near the end of life continue to suffer from a substantial symptom burden, with pain, agitation, and shortness of breath being the most predominant symptoms.”
However, one factor which was not addressed in the study but may have a significant impact on quality of life of these patients is hospice care, he said. “We have one advantage [in the US] in that we do have the availability of hospice, which has been demonstrated in multiple studies to improve the experience of patients dying from dementia. This includes better symptom management, dying in a location of choice, the reduced likelihood of hospitalization (on average an over 50 percent reduction), and family members reporting much better quality of care compared with not being in a hospice.”
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Steve Iliffe, MD, professor of primary care for older people at the University College of London School of Life and Medical Sciences, said the findings indicate that “pain and respiratory symptoms are probably underestimated, and the doses of opioids used may be too low for some patients.” Because the Dutch employ trained elderly care physicians in their nursing homes, he said he suspects that “the management problems outlined in the paper would be more evident in countries with a less structured approach to end of life care for people with dementia, like the UK.”
From a clinical perspective, Dr. Shega said, this study re-emphasizes the need for health care providers to continue to assess dementia patients for symptoms using a multi-faceted approach. “That approach needs to include direct observation for behaviors indicative of an under-treated symptom, review of the patients' co-morbid conditions and whether or not each is associated with symptoms, a conversation with family members to see what they think the patient is experiencing and why, and then finally corroboration of the patient's symptoms with other health care professionals. The ascertainment of this information can then be integrated into the care plan.”
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A good behavioral assessment starts simply with “standing at the bedside for a minute or so, watching the patient closely, and identifying whether any behaviors are present and whether or not they represent an under-treated symptom,” he said.
In the Dutch study, the amount of opioids administered in the last day of life (90 mg) was exceptionally high, Dr. Shega said, likely because of the extremely high rate of palliative sedation. He believes the first line of therapy for pain management in dementia patients should be acetaminophen because it is effective for mild to moderate pain, relatively safe, and associated with the least amount of side effects. If that does not work, then Dr. Shega may prescribe a low dose of an opioid.
It is very important to always have a conversation with the patient's family and/or caregivers about the benefits and burdens associated with opioid therapy as a reduction in pain may be offset by increased sleepiness or constipation. “But untreated pain is associated with agitation, restlessness, and a poorer quality of life, so you have to balance the tradeoffs in the context of the care goals,” he said.
One of the big pitfalls of pain management for patients with dementia is only scheduling medication to be administered as needed, said Dr. Shega. “You need to schedule it around the clock because these patients can't ask for it when they are in discomfort.”
Finally, to improve the rate of symptom burden, it's important to recognize that sometimes treating one symptom, such as pain, may also improve another symptom, such as agitation. “I'm not sure that physicians are generally aware of this association.” Additionally, those dementia patients who develop a respiratory infection (the cause of death in 18 percent of the patients in the current study), may continue to experience high symptom burden, “so even when you're treating the infection itself, you still have remember to manage the symptoms.”
In the future, “we need to continue to educate both clinicians and family members about doing a comprehensive pain assessment in somebody who cannot communicate. We also need research to understand more about the symptoms patients dying from dementia experience; there are very few studies that have done direct interventions to try to figure out what is the best management approach,” he said.
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