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    Nutrition in advanced dementia


    Tube-feeding or hand-feeding until death?

    There is one inescapable truth: All older adults with dementia eventually die. Some will die with PEG tubes, but most will die having eaten their last meal with their mouths, tongue, and perhaps, even their own teeth. Four million people suffer from dementia in this country; one-third of nursing home residents with advanced cognitive impairment currently have feeding tubes.1

    With little scientific data to help them, families may argue for, or agree to, tube feedings because of their perception that "starving to death" from lack of nutrition and hydration is a miserable, inhumane way to die. Few physicians are persuaded by the bioethical argument that a feeding tube is not mandatory or by the 1976 Quinlan decision of the Supreme Court that artificial nutrition and hydration constitute medical therapy that can be legitimately withheld if the risks outweigh the benefits.2

    What then is the evidence that chronic PEG-feedings in demented older patients can prevent aspiration, prolong life, or prevent suffering and improve quality of life?

    First, feeding tubes do not prevent aspiration pneumonia, as reflux of gastric contents and the aspiration of saliva continue with PEG feeding. Whether tube-feeding reduces the risk of aspiration has never been proven: There have been no randomized clinical trials (RCT) assessing the incidence or severity of aspiration and pneumonia in demented patients with and without tube-feedings.

    Second, advanced dementia is a terminal disease and tube-feeding has not been shown to delay death. In an observational study done in a nursing home, survival rates for patients with advanced dementia who were hand-fed and those who were tube-fed were the same.3 Once again, no RCT of complications or survival of hand- versus tube-feeding in demented older patients has ever been performed.

    Third, quality of life has not been shown to improve with PEG tube-feedings. Since eating is the last activity of daily living to be lost in demented adults, this loss suggests that the final phase of life is here and that death is near. PEG tube-feeding not only prolongs suffering but actually causes it: The PEG tube placement complication rate is between 32 and 70% and often results in restraint use. PEG tubes deprive the older demented adult of one of the last primitive sensations: the taste of food in their mouths! My own experience over 30 years is that dying, demented individuals are very ill with multiple co-morbidities. If all hydration and nutrition is stopped, they quickly lapse into a uremic coma within days to weeks and die in no pain.

    Given that medical science has not yet proven a definitive advantage to tube-feeding in demented adults, older demented patients can live with PEG tubes or they can live without them. Regardless of which decision is made-tube-feeding until death or hand-feeding until death-the clinician must be aware of the techniques to do both. "Percutaneous endoscopic gastrostomy: Clinical care of PEG tubes in older adults" (pg 22) describes the subtleties of managing chronic tube-feedings and gives helpful hints about how to prevent and care for various complications that arise. For the majority of demented individuals who are hand-fed, however, we must educate caregivers and family about proper techniques and the need to limit visual and aural distractions. Specifically, the patient must be in the semi-recumbent position, and time in the supine position, particularly after feeding, must be limited. Use of finger and preferred foods, and those with strong flavors that are hot or cold rather than tepid may improve the outcomes of hand-feedings. Techniques such as reminders to swallow, multiple swallows per bolus, gentle coughing after each bolus, bolus size less than 1 teaspoon and thickeners may also be helpful.

    Both hand- and PEG-feedings require meticulous attention to detail. Until more data are available proving one side or the other, we primary care physicians must be knowledgeable about both.

    References

    1. Mitchell SL, Teno JM, Roy J, et al. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA 2003; 290(1):73-80.

    2. Angus F, Burakoff R. The percutaneous endoscopic gastrostomy tube: Medical and ethical issues in placement. Amer J Gastroenterol 2003; 98(2):272-7.

    3. Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med 1997; 157(3):327-32.

    Correction

    An error was printed in the July 2003 article, "Mobility: A practical guide to managing osteoarthritis and falls" [Geriatrics 2003; 58(July):22-9]. On the table on page 26, the comments for tramadol should read as follows:

    "Non-narcotic with mu opioid receptor binding properties. Can cause psychic and physical dependence of the morphine type. May lower the seizure threshold. Use in patients with epilepsy, or concomitant use with certain antidepressant agents, particularly SSRIs and tricyclic compounds, may further increase the risk of seizure."

    A revised version of the article is available online at www.geri.com.

     

    Tube-feeding or hand-feeding until death?

    There is one inescapable truth: All older adults with dementia eventually die. Some will die with PEG tubes, but most will die having eaten their last meal with their mouths, tongue, and perhaps, even their own teeth. Four million people suffer from dementia in this country; one-third of nursing home residents with advanced cognitive impairment currently have feeding tubes.1

    With little scientific data to help them, families may argue for, or agree to, tube feedings because of their perception that "starving to death" from lack of nutrition and hydration is a miserable, inhumane way to die. Few physicians are persuaded by the bioethical argument that a feeding tube is not mandatory or by the 1976 Quinlan decision of the Supreme Court that artificial nutrition and hydration constitute medical therapy that can be legitimately withheld if the risks outweigh the benefits.2

    What then is the evidence that chronic PEG-feedings in demented older patients can prevent aspiration, prolong life, or prevent suffering and improve quality of life?

    First, feeding tubes do not prevent aspiration pneumonia, as reflux of gastric contents and the aspiration of saliva continue with PEG feeding. Whether tube-feeding reduces the risk of aspiration has never been proven: There have been no randomized clinical trials (RCT) assessing the incidence or severity of aspiration and pneumonia in demented patients with and without tube-feedings.

    Second, advanced dementia is a terminal disease and tube-feeding has not been shown to delay death. In an observational study done in a nursing home, survival rates for patients with advanced dementia who were hand-fed and those who were tube-fed were the same.3 Once again, no RCT of complications or survival of hand- versus tube-feeding in demented older patients has ever been performed.

    Third, quality of life has not been shown to improve with PEG tube-feedings. Since eating is the last activity of daily living to be lost in demented adults, this loss suggests that the final phase of life is here and that death is near. PEG tube-feeding not only prolongs suffering but actually causes it: The PEG tube placement complication rate is between 32 and 70% and often results in restraint use. PEG tubes deprive the older demented adult of one of the last primitive sensations: the taste of food in their mouths! My own experience over 30 years is that dying, demented individuals are very ill with multiple co-morbidities. If all hydration and nutrition is stopped, they quickly lapse into a uremic coma within days to weeks and die in no pain.

    Given that medical science has not yet proven a definitive advantage to tube-feeding in demented adults, older demented patients can live with PEG tubes or they can live without them. Regardless of which decision is made-tube-feeding until death or hand-feeding until death-the clinician must be aware of the techniques to do both. "Percutaneous endoscopic gastrostomy: Clinical care of PEG tubes in older adults" (pg 22) describes the subtleties of managing chronic tube-feedings and gives helpful hints about how to prevent and care for various complications that arise. For the majority of demented individuals who are hand-fed, however, we must educate caregivers and family about proper techniques and the need to limit visual and aural distractions. Specifically, the patient must be in the semi-recumbent position, and time in the supine position, particularly after feeding, must be limited. Use of finger and preferred foods, and those with strong flavors that are hot or cold rather than tepid may improve the outcomes of hand-feedings. Techniques such as reminders to swallow, multiple swallows per bolus, gentle coughing after each bolus, bolus size less than 1 teaspoon and thickeners may also be helpful.

    Both hand- and PEG-feedings require meticulous attention to detail. Until more data are available proving one side or the other, we primary care physicians must be knowledgeable about both.

    References

    1. Mitchell SL, Teno JM, Roy J, et al. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA 2003; 290(1):73-80.

    2. Angus F, Burakoff R. The percutaneous endoscopic gastrostomy tube: Medical and ethical issues in placement. Amer J Gastroenterol 2003; 98(2):272-7.

    3. Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med 1997; 157(3):327-32.

    Correction

    An error was printed in the July 2003 article, "Mobility: A practical guide to managing osteoarthritis and falls" [Geriatrics 2003; 58(July):22-9]. On the table on page 26, the comments for tramadol should read as follows:

    "Non-narcotic with mu opioid receptor binding properties. Can cause psychic and physical dependence of the morphine type. May lower the seizure threshold. Use in patients with epilepsy, or concomitant use with certain antidepressant agents, particularly SSRIs and tricyclic compounds, may further increase the risk of seizure."

    A revised version of the article is available online at www.geri.com.

     

    Fredrick T. Sherman, MD, MSc, Medical Editor
    Dr. Sherman is Medical Director for Senior Services, Mount Sinai NYU Health; Medical Director for Senior Health Partners; and Clinical ...