Pulling the Feed Tube From Someone
WHEN TO USE (OR PULL) THE FEEDING TUBE?
February 7, 2006
In Denver last month, a severely impaired five-year-old child died after the feeding tube that had provided him food and water for most of his life was removed.
The child, Dylan Walborn, had suffered an extensive intrauterine stroke resulting in severe brain damage at birth. He was never able to blink, make eye contact, smile, suck, swallow, or interact with others. His parents were never sure if he could recognize them, according to child neurologist Julie Parsons, MD, at Denver's Children's Hospital.
"Dylan had a gastrostomy tube placed at 24 days of age when it became apparent that he was not making any progress towards developing a suck or swallow," she told Neurology Today. "He had a tracheostomy at age 5 months when he was choking on secretions. His limbs were stiff with multiple joint contractures, and he had no volitional movement. His only movement was opisthotonus and increased stiffness with seizures.
CANDID DISCUSSIONS ABOUT CARE
"In our frequent discussions about Dylan for five years, we had honest conversations about all aspects of his care," Dr. Parsons said. "The conversations were cordial, respectful, reciprocal, and forthright. Dylan's parents were proactive and had tried both conventional and alternative therapies over the years."
Dr. David Casarett: "The most important thing to emphasize is that regardless of the decision a family makes, the physician will continue to care for that patient. Too often the perception is that if you dont put in a feeding tube, the physician will give up."
Despite multiple medications at high dosages, Dylan's seizures were increasing in intensity and frequency in the last year of his life, and his parents thought he was experiencing pain and discomfort.
When they approached Dr. Parsons about the possibility of withdrawing nutrition, she convened a meeting with his parents, Dylan's primary care provider, two representatives of the Ethics Committee at Denver Children's Hospital, and a representative from the Butterfly Program, the hospital's hospice and palliative care program.
The short life and heartrending death of Dylan Walborn, movingly told in an extensive story in the Denver Post, is a case study in the profound human emotions that accompany efforts to feed the severely ill who cannot feed themselves and any decision to withdraw artificial nutrition and hydration (ANH).
RISKS AND BENEFITS FOR ANH
But Dr. Parsons and other experts emphasize that use of a feeding tube – a medical procedure requiring surgery and technical expertise – is accompanied by risks and benefits that are likely to vary depending on the individual patient, the nature of the condition, and the medical facility.
"I consider artificial nutrition a medical therapy, as much as chemotherapy, antibiotics, or mechanical ventilation," Dr. Parsons said. "As with any medical treatment, the risks and benefits of the therapy must be considered. Initiation of therapy does not imply an obligation to continue if a medical condition is worsening despite treatment."
What are the risks? An October 13, 1999 report in the Journal of the American Medical Association found that the most common adverse effect associated with all types of tube feeding is aspiration pneumonia. For percutaneous endoscopic gastrostomy (PEG) tubes, common adverse effects are tube occlusion, leaking, and local infection. Approximately two-thirds of nasogastric tubes require replacement, according to the JAMA report.
PEG USE IS REFLEXIVE
Experts say that PEG use has increased exponentially in the past two decades, and that decisions like those facing the parents of Dylan Walborn are far more common than the public may suppose.
But the authors of a Dec. 15 paper in the New England Journal of Medicine (2005:353:2607–2612) argue that the use of ANH has become largely reflexive, propelled more by custom, reimbursement, and regulatory structures than by evidence of efficacy in improving survival or quality of life.
"Many people receiving it probably aren't benefiting from it," according to lead author David J. Casarett, MD, Assistant Professor of Medicine and a staff physician with the Center for Health Equity Research and Promotion at the Philadelphia Veterans Affairs Medical Center and the Division of Geriatric Medicine at the University of Pennsylvania School of Medicine.
Dr. James L. Bernat: "Some might claim that the tragic circumstance of a 5-year-old child with severe congenital brain damage after stroke is not identical to the severely demented elderly person. What is the same is that the prognosis for improvement for both is essentially zero and that others must determine whether continued artificial hydration and nutrition is in the patients best interests."
"PEG use has increased dramatically in the last 15 years, particularly in nursing homes. It has become almost a knee jerk response with an older resident who has dementia and difficulty swallowing and who is losing weight, to insert a feeding tube without nearly enough thought of risks and benefits."
While substantial literature supports the efficacy of artificial nutrition and hydration for some neurological conditions, especially bulbar amyotrophic lateral sclerosis and acute stroke, the benefits are less clear for patients with dementia, the authors say.
"Some might claim that the tragic circumstance of a 5-year-old child with severe congenital brain damage after stroke is not identical to the severely demented elderly person," said James L. Bernat, MD, Professor of Medicine (Neurology) at Dartmouth Medical School and a member of the AAN Ethics, Law and Humanities Committee.
"What is the same is that the prognosis for improvement for both is essentially zero and that others must determine whether continued artificial hydration and nutrition is in the patient's best interests," he said.
"In the elderly patient, a substituted judgment usually can be made based on knowledge of the patient's previously stated values and treatment preferences," Dr. Bernat continued. "Obviously, this decision-making standard cannot be used in the 5-year-old in whom only a best interest standard can be used."
"Disability rights advocates will surely criticize the parents and physicians for their action in this case," Dr. Bernat said in an e-mail. "It is hard to imagine a more gut-wrenching decision than that faced by these parents. I think all of us should be reluctant to second-guess their decision without knowing more details about the case."
Dr. Bernat noted that the AAN does not have a position specifically on feeding tubes but the issue is discussed in a paper on the ethical aspects in care of demented patients, "Ethics Issues in the Management of the Demented Patient," available online on the AAN site (www.aan.com; select Ethics/Position Statements). It says basically that inserting a feeding tube is not mandatory for a severely demented patient who no longer can eat, although offering and encouraging oral feeding should be done.
REIMBURSEMENT, REGULATIONS DRIVE USE OF ANH
Yet the concept of a feeding tube as medical treatment – one that can and should be terminated when the risks outweigh the benefits – is likely to run counter to a deeply-entrenched belief that the provision of food for those who cannot nourish themselves is an essential human necessity, and a staple of ethical medical care.
"Many people believe that nutrition has to be offered, in the same way that any physician would offer a plan for pain management and basic care," Dr. Casarett said. "And in fact when you talk about a decision to forego a feeding tube, people often use the language of 'starvation.' Moreover, a host of pressures unrelated to the actual needs of the patient or the wishes of the family contrive to make feeding tubes commonplace, particularly in the case of nursing home patients."
"It is an odd fact of nursing home reimbursement that the institution is paid more to provide care to someone with a feeding tube, even though those residents actually cost less to care for than people without tubes," Dr. Casarett said. And the homes must report figures for resident weight loss to the federal Centers for Medicare and Medicaid (CMS), which then posts figures on a publicly accessible Web site. Nursing homes with high figures for resident weight loss are not liable to be popular.
"Most people wouldn't want to put a relative in that nursing home," Dr. Casarett said. "The best way nursing homes can think of to get those numbers down is to put residents on feeding tubes."
WHEN TO DISCUSS ANH
"As physicians we have gotten better about communicating a lot of things, in terms of breaking bad news and end-of-life decisions," Dr. Casarett said. "But we haven't learned that much about the way we talk about feeding tubes. The most important thing to emphasize is that regardless of the decision a family makes, the physician will continue to care for that patient. Too often the perception is that if you don't put in a feeding tube, the physician will give up."
Arthur Caplan, PhD, Director of the Center for Bioethics at the University of Pennsylvania and co-author of the NEJM paper, emphasized that the time to begin talking about the possibility of withdrawing feeding is before the tube is inserted, not after.
"Physicians should always have a discussion from the start about what the circumstances are under which any intervention might end," Dr. Caplan told Neurology Today. "Every technology or intervention has to stop at some point – it may not stop until the patient has died, but doctors need to signal to people early on that termination of a treatment is something that may need to be considered."
HOW MANY USE FEEDING TUBES?
How many people receive feeding tubes? The numbers across conditions – from dementia and stroke to ALS – are unclear. In 2003, the most recent year for which statistics are available, the National Center for Health Statistics reported that 146,000 procedures were performed to insert permanent feeding tubes into patients.
Even less is known about the number of people who choose to pull feeding tubes. Although hospitals are required to convene ethics panels to determine patient treatment, there is no reporting requirement or repository for this information.
On the legislative front, the state laws regarding the use of feeding tubes vary widely, according to Daniel G. Larriviere, MD, JD, a member of the AAN Ethics, Law, and Humanities Committee. Dr. Larriviere, an Instructor of Neurology at the University of Virginia, presented an overview of the laws last month at an Institute of Medicine meeting on persistent vegetative state; an analysis of that data is under review for publication in a journal. Neurology Today will cover the paper in greater detail when it is published.
ARTICLE IN BRIEF
- ✓ A news story about a family who decided to withdraw artificial nutrition and hydration (ANH) from their severely disabled five-year-old prompts discussion of when and how decisions are made about using ANH.
REFERENCE
Casarett D, Kapo J, Caplan A. Appropriate use of artificial nutrition and hydration – Fundamental principles and recommendations. N Engl J Med 2005:353:2607–2612.
Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA 1999;282:1365–1370.
Source: https://journals.lww.com/neurotodayonline/fulltext/2006/02070/when_to_use__or_pull__the_feeding_tube_.7.aspx
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