A Success Story

In a research letter published this week in JAMA, geriatrician Susan Mitchell presents some startling—and encouraging—data. She reports that between 2000 and 2014, the rate of feeding tube insertion in US nursing home residents with advanced dementia fell from 11.7 percent to 5.7 percent.

It’s an achievement to be proud of—and even though the rate of feeding tube use remains high in blacks, the extent of the drop over the last 15 years is if anything more dramatic in the black population: for whites in nursing homes who developed advanced dementia and feeding difficulty, the rate went from 8.6 percent to 3.1 percent; for blacks in went from 37.5 percent to 17.5 percent. How and why did this dramatic change occur? 

Much of the credit goes to the work of Dr. Mitchell herself, who has tirelessly studied the use of feeding tubes in this population since the ate 1990s. Her initial foray into this field was a study with the somewhat inauspicious title, "The Risk Factors and Impact on Survival of Feeding Tube Placement in Nursing Home Residents with severe Cognitive Impairment." Published in what back in 1997 was called the Archives of Internal Medicine, it provided the first compelling evidence that, contrary to common sense expectations, performing a surgical procedure to provide ongoing artificial nutrition to nursing home residents who, in the course of developing advanced cognitive impairment, had stopped eating, did not prolong life. It wasn't a randomized controlled trial and it was confined to nursing home residents in the state of Washington, but it was a carefully conducted analysis of a reliable data base.

When the findings were confirmed in subsequent studies, Dr. Mitchell went on to examine the nursing home factors associated with tube feeding (on-site speech therapy, low aide to patient ratios, and evidence of poor quality care) and the clinical and organizational factors associated with tube feeding (for profit status, large size, and urban location). She looked at the financial incentives for feeding tube use (Medicare pays more) and the cultural factors associated with feeding tubes (facilities with a home like environment, a focus on food, specially trained aides, and an emphasis on advance care planning were much less likely to use them).  And she established that the development of difficulty chewing and swallowing is par for the course as dementia becomes very advanced. Many other investigators contributed to the subject as well: a search on Google Scholar using the phrases “artificial nutrition” and “advanced dementia” today produced 1340 hits.

But evidence does not always change practice, especially in an area as emotionally charged as the use of food and drink. During the same period that tube feeding use was falling in advanced dementia, we witnessed the spectacle of Terri Schiavo, a young woman in a persistent vegetative state, whose feeding tube was repeatedly inserted and withdrawn for seven years as her husband (her official surrogate) and her parents battled in the courts. What else accounts for the change in behavior and what can we learn from this experience about how to influence health care policy?

I suspect three factors played a role in moving the medical profession, hospitals, and the public towards a growing acceptance of palliative care--and away from technological interventions such as feeding tubes-- for individuals with advanced dementia.

First, physicians who cared for individuals with dementia were increasingly disturbed by the suffering that they saw inflicted on their patients from the growing acceptance of technological interventions. It wasn’t just feeding tubes; it was dialysis and ventilators and ICU care. Just as CPR had spread from use in otherwise healthy individuals who suffered an acute myocardial infarction, complicated by a ventricular arrhythmia, to all dying patients, so too did other invasive technologies proliferate due to “indications creep.” But it was bad enough to do something unpleasant to a dying patient who understood the intention behind the procedure or test; it was worse to do something painful or frightening to a dying patient who was by definition unable to understand its purpose (or intended purpose). As patient involvement in decision-making became more common and competent patients had the option of choosing or rejecting Hail Mary treatment, the plight of the demented patient became more poignant. Several of us wrote articles arguing that from an ethical perspective, there was no requirement to provide patients in the final phase of life with artificial nutrition and hydration. In fact, it was arguably this growing malaise on the part of physicians with the widespread use of burdensome technology in patients with advanced dementia that led to the burgeoning research on its effects.

Second, the field of palliative care has taken off during the last fifteen years. While much of palliative care focuses on cancer patients and on patients who are imminently dying, the discipline is in principle concerned will all serious, life-threatening illness. The growing acceptability of palliative care—as evidenced, for example, by Medicare choosing to pay doctors and nurses for advance care planning meetings—has brought a recognition that what we customarily do to and for patients near the end of life is not always what they want or what is most beneficial to them. Responding to eating difficulties in a patient with advanced dementia by inserting a tube rather than by limited hand feeding is just another example of the tendencies that palliative care challenges.

Finally, forgoing a technological solution to a medical problem is attractive because it saves money. A gastrostomy tube in the setting of advanced dementia is an example of an intervention that manages to simultaneously be useless, burdensome, and costly. We need to find more examples of widely used treatments that meet all three criteria, such as renal dialysis in frail older people. Feeding tubes for people who are dying of dementia is just the beginning.