Study: Late-Stage Dementia Patients 'Slammed Around Health Care System'

Dr. Joan Teno, a professor at Brown University’s medical school, recently published a study concluding that many patients with advanced dementia, including Alzheimer’s disease, get "slammed around the health care system." Teno told WBUR’s All Things Considered host Sacha Pfeiffer (full transcript below) that dementia patients are often transferred between nursing homes and hospitals in the final days of their lives because of infections and other medical complications related to the disease. In many cases, Teno explained, they have difficulty eating, which leads to them aspirating their food and saliva and, ultimately, can cause pneumonia.

Hospitalizations are extremely difficult for patients with advanced dementia, she said, because of relocation stress and agitation. Often, doctors treat that agitation with medication, and they frequently insert feeding tubes.

"You end up needing to have to restrain (the patients) to prevent them from pulling out a feeding tube, or giving medicines to calm them down," Teno said. "The restraining or giving those medicines to calm them down can result in other medical conditions that are detrimental to their health."

A recent study led by Teno found that in regions of the U.S. with the highest rate of transfers between nursing homes and hospitals for dementia patients, the patients were three times more likely to have a feeding tube inserted, two times more likely to be in an intensive care unit in the final 30 days of life, and three times more likely to have a severe bed sore.

Teno said nursing homes often fail to speak thoroughly with families about goals for the patient, or to develop care plans based on those goals. She added that there are "really perverse incentives" in Medicare and Medicaid to continue these nursing home-to-hospital transfers. If a nursing home sends a resident to the hospital, Teno said, the nursing home will be reimbursed at higher Medicare payment rates when the patient returns — often four to five times higher than what Medicaid would pay.

"My concern is that this financial incentive is resulting in poor (health) outcomes" for patients, she said.

Teno recommends that family members talk to doctors and nursing home administrators about the patient’s goals and wishes. If transfers to hospitals do not coincide with those goals, she said, families should request an order to not hospitalize "unless for the comfort of the patient."

Transcript:

Sacha Pfeiffer: You say that patients with advanced dementia often get "slammed around the health care system." What do you mean by that?

Joan Teno: Hospitalizations in these patients with this advanced degree of dementia are really difficult for these patients. They don't understand what's happening to them and they get distressed, they develop agitation, and then they get medications to treat that agitation and actually their health outcomes are worse

You made a reference to simple infections that could be cared for in a nursing home. You're talking about things like urinary tract infections?

Or pneumonia. Eighty-six percent of them will develop a problem with eating. They end up choking on their food. One half of these people develop an aspirational pneumonia. The best available evidence suggests that you can treat that pneumonia safely in a nursing home.

You've also found, particularly when it comes to patients who have such advanced dementia, that they can't swallow and can't eat, that feeding tubes are inserted. And your view, it seems, is that that is not the best thing for the patient.

What I want families to realize is that feeding tubes are not about risk. Often, when you put a feeding tube into people with advanced dementia, you end up needing to have to restrain them to prevent them from pulling out a feeding tube or giving them medicines to calm them down. The restraining or giving those medicines to calm them down can result in other conditions that are detrimental to their health, like bed sores. Rather, what we recommend is that you assiduously try to hand-feed that patient to encourage them to eat — and if they're unable to eat and unable to maintain their nutrition, to consider a referral to hospice.

In your research, you found that, often, Alzheimer's patients at a very advanced state — patients who ultimately only have a few days left to live — end up being transferred back and forth between hospitals to nursing homes. Why is that happening if your research shows that it has such a detrimental effect on them?

First, there's a failure of that nursing home to talk about what the goals of care are and to make a plan that is based on the patient's goals and values. Second, there are really perverse incentives in Medicare and Medicaid right now. If you get sick enough to go in the hospital, you will get reimbursed with Medicare, which is about four to five times the Medicaid payment. And, for many nursing homes, that incentive is so powerful that they will send that patient to the hospital and then have them come back after three days to have them get that higher Medicare payment rate. My concern is that this financial incentive is resulting in poor outcomes.

What is your advice, then, for people who have Alzheimer's or family members of people who have Alzheimer's and don't want to find themselves in these situations?

For those of us who are faced with a future that might include dementia, one of the things to do is to complete a written advance directive and state what your wishes are. For family members who are taking care of patients with this degree of dementia, to really reflect on what the patient's goals and values are. And if the answer is that these hospitalizations are not consistent with the patient's wishes and goals, talk to your physician or your nurse practitioner at the nursing home and ask for an order to do-not-hospitalize except for the comfort of the patient.