Hospice care is meant to bring comfort, peace, and dignity to people at the end of life. But for many Americans with dementia, the end-of-life journey can be long and uncertain.
That makes it especially important to make sure treatments are helping, not harming.
A new study by the University of Michigan, published in JAMA Network Open, shows that some drugs commonly used to calm patients—like benzodiazepines and antipsychotics—might actually increase the risk of death in people with dementia who are receiving hospice care.
The researchers studied over 139,000 people in nursing homes who had Alzheimer’s or similar conditions and were enrolled in hospice from 2014 to 2018.
They found that people who started taking these calming medications after entering hospice were more likely to die within six months than those who didn’t.
Specifically, those who got benzodiazepines like Ativan or Valium were 41% more likely to die, and those who got antipsychotics like Haldol or Zyprexa were 16% more likely to die.
Dr. Lauren Gerlach, the lead author, said that many people with dementia who enter hospice aren’t actually near death. About 1 in 5 will live longer than six months, which is the time limit set by Medicare to qualify for hospice. That’s why it’s so important that any medications given during this time improve quality of life rather than reduce it.
The study showed that nearly half the patients received a new benzodiazepine prescription, and 13% got an antipsychotic, often within days of starting hospice.
Yet the average hospice stay was over 130 days, meaning most weren’t in their final days. The fast use of these drugs suggests that they may be part of standard practice rather than being carefully chosen for each person.
These medications can help with symptoms like anxiety or confusion, but they also come with serious risks—especially for older adults. They can cause confusion, sleepiness, and falls.
The FDA already puts strong warnings on antipsychotics for people with dementia due to the increased risk of death. Benzodiazepines have raised similar concerns.
There are also gaps in how these medications are tracked. While nursing homes must report their use and are judged partly based on them, hospices are not required to report what medications they use.
That means there’s very little national information about what hospice patients are actually receiving. Between 2014 and 2018, hospices briefly had to report prescribing data, which gave researchers a rare look at these patterns.
Another issue is that the six-month hospice rule doesn’t fit well with how dementia progresses. People with dementia may live for years with serious symptoms. When they outlive the six-month limit, they may be removed from hospice and lose access to the supportive care they still need.
Dr. Gerlach and her team also found huge differences between hospice agencies in how often they gave out these drugs. In some, only 12% of patients got benzodiazepines; in others, it was 80%. This suggests that agency rules or habits, not just patient needs, may play a big role.
Because most people with dementia will now enter hospice at some point, and that number is growing, experts say it’s time to create better hospice care guidelines tailored to dementia.
This includes clearer rules about prescribing, more transparency, and more support for doctors and nurses to make decisions that are based on each patient’s needs.
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The study is published in JAMA Network Open.
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