The old man lashed out the first night he spent in the nursing home. His behavior was so alarming that staff transferred him to a nearby hospital for evaluation.
There, the gentleman was put in restraints and sedated. “He stopped walking, talking. He didn’t seem to recognize anybody,” recalled Dr. Michael Rothberg, vice chair for research in the Medicine Institute at the Cleveland Clinic.
Dr. Rothberg stopped to collect himself as he spoke about this dementia patient, his father-in-law.
After another difficult hospitalization, this time for pneumonia, the family decided they didn’t want this vulnerable, distressed relative transferred from the nursing home again if he took ill. They asked that a “do not hospitalize” order be communicated to staff and placed in his medical record. Several months later, the patient stopped eating and drinking and passed away.
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Now, Dr. Rothberg and colleagues in Pennsylvania and Massachusetts have written a new paper on these little known, poorly understood medical directives. It is a small study of 16 health care proxies for patients with advanced dementia — largely their adult children, and some nieces and nephews.
The key findings? Often, proxies are confused about how “do not hospitalize” orders work. Several proxies believed, mistakenly, that a such an order was equivalent to a request to withhold medical intervention altogether.
Proxies who understood what happens to people with advanced dementia – after being transferred from a nursing home to a hospital, more than half die within the next 18 months – were more likely to adopt this kind of directive, Dr. Rothberg found.
And a physician’s willingness to recommend it makes a difference.
“People told us, ‘Yes, someone mentioned this but we weren’t sure what it all meant,’” said Dr. Sarah Goff, an associate professor at Tufts University School of Medicine and a co-author of the article. (Under federal law, patients must be told of their right to complete advance directives — including a “do not hospitalize” order — upon admission to a nursing home.)
Generally, “do not hospitalize” orders are considered an option for frail seniors with serious illnesses, including advanced dementia, who often encounter multiple setbacks in a hospital while receiving uncertain benefits, explained Dr. Alex Smith, a geriatrician at the University of California, San Francisco. Setbacks can include delirium, loss of mobility, poor nutrition, disrupted sleep and pain.
There are two types of “do not hospitalize” directives. The first is an absolute prohibition against sending someone to the hospital under any circumstances. “Some older patients (or their families) say, ‘I just don’t want to go through that again — I’ve been there, done that, and it’s just not worth it any longer,’” Dr. Goff said. It is important that physicians write these directives in such a way that they have the force of a medical order, Dr. Smith noted.
The second is a general recommendation to avoid the hospital — with stipulations. “You may say that in general the patient wants to avoid the hospital but each specific situation needs to be evaluated with the patient if they have capacity or, if not, with their health care proxy,” Dr. Smith said.
Alternately, the patient may specify certain situations in which a hospitalization may be allowed and exclude all others.
If an older woman with advanced dementia falls and breaks a bone, for example, her “do not hospitalize” directive may say that she wants to have bone fractures treated in the hospital. Or if an elderly man with bladder cancer has a urinary catheter that becomes blocked, that patient’s directive may say he wants to return to the hospital to get a new catheter inserted.
Families often think a “do not hospitalize” means “do not treat,” but that is not accurate. “What it means is, ‘We’ll do the best we can for you here in the nursing home, and if nature takes its course, then that’s all right,’” said Dr. John Culberson, an assistant professor of medicine at Baylor College of Medicine in Houston who has studied these directives.
How often do older patients with late-stage dementia or their surrogates embrace this alternative? In 2007, Dr. Susan Mitchell of Harvard Medical School examined a national database of more than 91,000 nursing home residents of this kind and found that 7.1 percent had “do not hospitalize” directives.
In a separate 2012 report, Dr. Mitchell determined that most hospital admissions of nursing home patients with late-stage dementia are potentially avoidable. Suspected infections (mostly respiratory) are the No. 1 reason for admissions and evidence indicates that these can be treated as effectively in nursing home as in acute care settings.
Given that comfort care is the professed goal for 96 percent of patients with late-stage dementia, “there are very rare circumstances in which a hospitalization would promote that goal,” Dr. Mitchell said. Unfortunately, most caregivers don’t realize this and learn it only through hard experience.
Have you had experience with “do not hospitalize” orders? If so, we’d like to hear about it in the comments.
Date: November 20, 2013