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Why Better Training is Needed on Feeding Tubes for Severely Demented Patients

Kreimer, Susan

doi: 10.1097/01.NT.0000449803.32200.58
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Findings from a new report suggest that subspecialists may not have sufficient knowledge about the risks and benefits of using percutaneous endoscopic gastrostomy feeding tubes in people with severe dementia. It also highlights the lack of efficacy for feeding tubes, compared with hand feeding, in extending survival and preventing aspiration pneumonias and pressure ulcers in these patients.

Advanced dementia patients who were hospitalized seemed to receive more feeding tube insertions when their attending physicians were all subspecialists or a mixture of physician types, compared with patients whose attending physicians were hospitalists or nonhospitalist generalists, according to a new report in the April issue of Health Affairs.

Using Medicare hospital claims data to identify hospitalizations in which a PEG feeding tube was inserted as the sole surgical procedure, the investigators reported that among 53,492 hospitalizations of nursing home residents with an infection or dehydration between 2001 and 2010, the rates of feeding tube insertion were strikingly lower when the patients' attending physicians were hospitalists (1.6 percent) or nonhospitalist generalists (2.2 percent), compared with all subspecialists (11.0 percent) or a combination of physicians by type, which typically included a subspecialist (15.6 percent). The fraction of patients seen by a mixture of attending physicians rose from 28.9 percent in 2001 to 38.3 percent in 2010.

The findings suggest that subspecialists may not have sufficient knowledge about the risks and benefits of using percutaneous endoscopic gastrostomy (PEG) feeding tubes in people with severe dementia. It also highlights the lack of efficacy for feeding tubes, compared with hand feeding, in extending survival and preventing aspiration pneumonias and pressure ulcers in these patients.

The new study also recommends that hospitals evaluate how they staff the role of attending physician and ensure coordination of care when patient handoffs occur between different types of attending physicians.

Previous research by these authors revealed striking variations in states' rates of hospitalizations among nursing home residents with advanced dementia. Regions with higher rates of transitions between facilities for such residents also had greater rates of PEG feeding tube insertions.

Deciding whether to place a feeding tube is fraught with complex challenges, the study's lead author Joan M. Teno, MD, an associate director of the Center for Gerontology and Health Care Research at Brown University Medical School in Providence, RI, told Neurology Today. “A basic part of our culture is that if we are sick with the cold or flu, our mother always gave us chicken soup, so families believe that providing nourishment helps people get better.” Dr. Teno's research and clinical work focus on measuring and improving quality of life among frail, older and dying individuals.

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Several palliative care experts and neurologists responded to the new report, with insights into weighing the pros and cons of feeding tube insertion with patients and their next of kin.

“Unfortunately, many of my colleagues believe that feeding tubes prevent aspiration pneumonia — a fact that is clearly disputed in the literature,” said Lynne P. Taylor, MD, a neuro-oncologist and director of palliative care at Tufts Medical Center in Boston. “Even when I make the medical literature available, many patients with dementia are sent to the operating room for feeding tube placement,” said Dr. Taylor, who is also an associate professor of neurology and medicine.

Complicating this type of crisis is the limited training that neurologists receive in end-of-life care during residency. “As interns and residents, we are taught to think each day in the hospital setting, ‘How do I advance the plan of care today?’ I would argue that should be, ‘How do I advance the plan of care, and how can I improve the quality of life for the patient and their caregiver today?’” said Farrah N. Daly, MD, MBA, a neuro-palliative care specialist in northern Virginia.

Higher reimbursements for care may still play a role in the continuing use of feeding tubes in nursing homes and other long-term care facilities, said Jerome E. Kurent, MD, MPH, a professor of neurology and medicine at the Medical University of South Carolina in Charleston.

“At least one study published several years ago reported that some nursing home physicians experienced significant pressure from nursing home administrators to place feeding tubes when they would otherwise not have considered doing so,” said Dr. Kurent, a hospice physician for the last 15 years. “This raises important ethical questions regarding medical decision-making and undue influence on physicians.”

For some patients under a neurologist's care, feeding tubes may be appropriate. Patients with amyotrophic lateral sclerosis (ALS) may benefit from feeding tubes, particularly in an earlier stage of their illness, when difficulty swallowing could pose a significant impediment to maintaining good nutrition and preventing weight loss. “ALS studies have indicated improved quality of life, and in some instances, prolongation of life for ALS patients,” Dr. Kurent said.

As a result, prior to feeding tube placement, it's important to obtain a more extended history in ascertaining the patient's status before aspiration or dehydration, Dr. Daly said. Questions to ask include: Was the person becoming weaker? Did he or she stop walking? Was the patient's weight declining? Were bedsores developing? “If these issues are present, then it is likely that trouble with swallowing is part of an overall progression toward death,” she said. “Circumstances where a feeding tube enhances quality of life are rare.”

When a patient experiences aspiration solely due to difficulty swallowing, diet consistency can be modified. Swallowing and feeding techniques also can be adjusted, allowing a person to enjoy food again. Family members should be informed that careful hand feeding of an altered diet may achieve “a balance between the burdens of aspiration and the benefits and pleasures of tasting food,” Dr. Daly said.

If recovery remains uncertain — and a feeding tube is placed in hopes of stimulating its onset — the health care provider and family should set a specific time frame to re-evaluate if a feeding tube is still appropriate. In the best-case scenario, a person who is ill has provided family members with guidance through a living will or advanced directive. Too frequently, Dr. Daly noted, that isn't the case.

Talking with families in the early stages of a dementia diagnosis — and sometimes even with patients if they're cognizant — about their wishes and goals of care helps make tough decisions easier down the road, said Robert M. Taylor, MD, an associate professor of neurology in the division of palliative medicine at The Ohio State University Wexner Medical Center in Columbus. Without these earlier conversations, the impending decision regarding a feeding tube “becomes a crisis rather than something predictable and anticipated.”

Neurologists who may approach these issues with hesitation could hone their communication skills through a continuing medical education course in palliative care or geriatrics. “Conversations around feeding tubes, like conversations around other significant aspects of goals of care, are ones which require training,” said R. Sean Morrison, MD, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and director of the National Palliative Care Research Center.

Most clinicians haven't undergone training that would enable them to participate in complex conversations with greater ease. “In the absence of that training, the easiest thing to do is just to order a test or a procedure,” Dr. Morrison said, while adding, “Like surgery, these are skills that need to be taught, they need to be practiced, before somebody really feels comfortable as an expert in having these types of discussions.”

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•. Teno JM, Meltzer DO, Mitchell SL, et al. Type of attending physician influenced feeding tube insertions for hospitalized elderly people with severe dementia. Health Aff 2014; 33(4): 675–682
•. Teno JM, Mor V, DeSilva D, et al. Use of feeding tubes in nursing home residents with severe cognitive impairment. JAMA 2002; 287(24): 3211–3212.
•. Teno JM, Michell SL, Gozalo PL, et al. Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA 2010; 303(6): 544–550.
•. Teno JM, Mitchell SL, Kuo SK, et al. Decision-making and outcomes of feeding tube insertion: A five-state study. J Am Geriatr Soc 2011; 59(5):881–886.
•. Video on Demand: How to incorporate palliative care into neurology practice:
© 2014 American Academy of Neurology