Imbedded in today’s nursing home culture is a practice that has been notoriously associated with elder abuse in nursing homes. Nationwide, many nursing home residents with advanced cognitive impairment are tube fed (35% according to some studies), despite no demonstrable benefits of this intervention in this population.
Studies suggest that organizational features of nursing homes are associated with this practice, but underlying reasons for these associations are poorly understood.
A feeding tube in a sub-standard nursing home can be a death sentence. My Elder Advocate has been very successful in preventing this abuse from occurring in many cases, where we were called in early to advocate for clients who were losing weight in nursing homes.
Older adults in nursing homes may require feeding tubes for a variety of reasons including swallowing difficulties and as a precautionary measure to attempt to prevent aspiration pneumonia in certain types of patients. These feeding tubes can be temporary or permanent and require close monitoring in order to avoid potentially life-threatening complications.
Margaret Mino has had a tough time grappling with the issue of feeding tubes – one of the crossroad decisions that family members have to so often shoulder for ailing elders. “It’s been a harrowing experience,” she said. She has loved and cared for her Uncle Rufus, now 89 and living in a Staten Island nursing home, since he moved into her parents’ home when she was a little girl.
A onetime coal miner, he has always needed family help — a cyst in his brain caused lifelong cognitive difficulties. He hasn’t eaten solid food for three years, but has done reasonably well on thickened liquids. And at their weekly visits, he can still talk with her, though mostly about the past. Lately, however, he’s grown awfully thin. When his weight reached 132 pounds, down from 165, she took her concerns to the staff. “He might be a candidate for a feeding tube,” a nurse suggested. Sometimes, the nurse added, people improve and start eating again and the tube can be removed.
“I just don’t think that’s very likely,” Ms. Mino told me. She knows a fair amount about the pluses and minuses of tube feeding in the elderly, having faced a similar decision for her father last spring. (I probably should have said that when it comes to caregiving, Ms. Mino, a federal employee, has had a tough 10 years.) She also knows that her uncle’s dementia will not abate.
Few questions are more upsetting to families than this one. Providing nourishment is, from the first moments of life, an elemental way for humans to demonstrate love and care. Saying no to a feeding tube can feel tantamount to allowing a loved one to starve. I sometimes wonder if it’s actually easier, emotionally, to decline CPR or a ventilator; we may not feel responsible for keeping relatives’ hearts beating or lungs functioning, but we have trouble overriding our impulse to feed them.
Hospitals that insert feeding tubes into patients with advanced dementia and discharge them to skilled nursing homes may, in fact, cause harm by making these patients more susceptible to pressure ulcers, according to a review of Medicare claims.
It had been believed that in patients with dementia, who often have eating disorders and nutritional imbalances cause and exacerbate pressure ulcers and prevent their healing. Feeding tubes delivering protein supplements were presumed to have been helpful. But prior studies were inconclusive and some studies revealed exactly the opposite. Up to a third of nursing home patients with advanced dementia have a feeding tube. In two-thirds of these cases, the tube was inserted while a patient was in the hospital.
Recognition is growing that dementia is a terminal illness that affects the body as well as the mind, and when a patient with dementia begins having trouble eating, this indicates the final stage of the illness has arrived. For these patients, she added, careful hand feeding can offer a safer and more comfortable alternative to feeding tube insertion, but it takes staff time and effort, which is a great problem in today’s severely understaffed nursing homes. It takes a substantial amount of time and effort to feed residents by mouth.
Statistically, for-profit hospitals were more likely to use feeding tubes, as were larger hospitals and those with the highest level of intensive care unit use for patients in their last six months of life. Likewise, for-profit nursing homes (80 percent of the nursing homes in the country) are more likely to encourage families to get feeding tubes for their elders, than not for profit nursing homes.
Nursing homes and hospitals together have “a strong financial incentive” to deal with patients with dementia by inserting feeding tubes rather than hand feeding them, which takes more time and patience.
The majority of the people who get these feeding tubes have already been in a nursing home for a while. They’ve exhausted their wealth and now qualify for Medicaid, and then become “dual-eligible,” qualifying for both Medicare and Medicaid. If the patient gets an infection, even a minor one, rather than treating the infection in the nursing home, they send them to the hospital.
The patients then become eligible for skilled nursing facility services for up to 100 days, ”which qualifies the nursing home to get paid roughly three to four times what would have been paid if the patient remains at the nursing home on Medicaid.
Because of the setting change, these patients develop disruptive behaviors, which usually leads to physical or pharmacological restraint with anti-psychotics. The nutritional supplements they’re getting can produce diarrhea. “Now, with the immobility, the incontinence, and diarrhea, they end up with pressure ulcers.”
It becomes a pathway. The nursing home wants to maximize its money so they send the patient to the hospital. The hospital wants to get that person out of there quickly so they can have a short stay and be under the number of hospital days they’re reimbursed for under that DRG. So the system is not focused on really doing a good job of talking with families about the risks and benefits of these feeding tubes. Instead, there’s a rush to put these in, and send the patients back to the nursing home.
Founder & CEO
My Elder Advocate, LLC
New York, New York