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LETTERS TO THE EDITOR
COMMENTS/RESPONSES SOME QUESTIONS ABOUT DEMENTIA AND TUBE FEEDINGS To the Editor: We agree with the American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee1 in that careful hand feeding should be offered to all individuals with advanced dementia. However, people with dementia must have a feeding tube placed under certain circumstances (e.g., beliefs, family burdens, family-related responsibilities, nursing home characteristics, acute hospital settings). Sometimes, surprisingly, the main and only indication for placing a feeding tube is prevention of aspiration pneumonia.2 Taking this into consideration those circumstances, we disagree that difficulty eating and feeding is associated with poor prognosis over the short term. Although the short-term prognosis, accurate prognosis of survival in advanced dementia is elusive.3 In addition, the assertion that tube feeding is associated with agitation and greater use of physical and chemical restraints is not completely correct. The setting might be completely different for individuals with dementia with a nasoenteric tube and those with percutaneous gastrostomy (PEG). In the case of nasoenteric tube, behavioral disturbances appear in many individuals and it is therefore necessary to prescribe physical or chemical (e.g., neuroleptics, benzodiazepines) restraints. In a previous letter to this journal, we reported that individuals with advanced dementia and PEG tubes did not exhibit PEG-associated behavioral disturbances and did not need any physical or chemical restrain.4 Although advanced dementia is a serious burden for health systems, professionals, relatives, and the individuals themselves we must be aware of some opinions on this topic. The individual’s comfort must be the main goal, but is an untreated individual with pneumonia, fever, or eating problems comfortable? Finally, advanced dementia is usually a complicated condition with a long trajectory. To affirm that all individuals with dementia have a terminal illness5 and therefore that use of a PEG tube must be completely excluded in elderly adults with dementia is similar to the idea described in a famous children’s story: “Sentence first—verdict afterwards.”6 Carlos Fernandez-Viadero, MD, PhD Valdecilla University Hospital, Santander, Cantabria, Spain Department of Biogerontology, School of Medicine, University of Cantabria, Cantabria, Spain Magdalena Jimenez-Sanz, RN Valdecilla University Hospital, Santander, Cantabria, Spain Rosario Verduga, MD, PhD Department of Psychobiology & Health Education, Universidad Nacional de Educaci on a Distancia, Cantabria, Spain
JULY 2015–VOL. 63, NO. 7
JAGS
Damaso Crespo, MD, PhD Department of Biogerontology, School of Medicine, University of Cantabria, Cantabria, Spain
ACKNOWLEDGMENTS Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Author Contributions: Fernandez-Viadero: study concept and design, preparation of manuscript. Jimenez-Sanz, Verduga: preparation of manuscript. Crespo: design, preparation of manuscript. Sponsor’s Role: The research group is supported in part by a grant from the Spanish Geriatrics & Gerontology Society, which had no responsibility for the concept or the idea of this letter. No funds have been diverted for this contribution.
REFERENCES 1. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc 2014;62:1590–1593. 2. Tawk MM, Elya MK. Recurrent aspiration pneumonia. N Engl J Med 2008;359:e27. 3. Mitchell SL, Black BS, Ersek M et al. Advanced dementia: State of the art and priorities for the next decade. Ann Intern Med 2012;156:45–51. 4. Fernandez-Viadero C, Pe~ na Sarabia N, Jimenez-Sanz M et al. Percutaneous endoscopic gastrotomy: Better than nasoenteric tube? J Am Geriatr Soc 2002;50:199–200. 5. Congedo M, Causarano RI, Alberti F et al. Ethical issues in end of life treatments for patients with dementia. Eur J Neurol 2010;17:774–779. 6. Carroll L. Alice’s Adventures in Wonderland. First published in 1865 by Macmillan & Co., London. Released 1866 by D. Appleton & Co., New York. A BookVirtual Digital Edition, v.1.2. Chicago, Illinois 2000. Available at https://www.adobe.com/be_en/active-use/pdf/Alice_in_Wonder land.pdf
AMERICAN GERIATRICS SOCIETY POSITION STATEMENT ON FEEDING TUBES IN ADVANCED DEMENTIA To the Editor: In its position statement on tube feeding for individuals with advanced dementia, the American Geriatrics Society maintains that in individuals with advanced dementia, observational evidence indicates that the benefits of tube feeding do not outweigh substantial associated treatment burdens.1 We would argue that, notwithstanding the evidence, it is difficult to convince nursing homes and geriatric staff that oral hand feeding is better for an individual with dementia who has stopped eating. After all, percutaneous endoscopic gastrostomy (PEG) feeding can deliver 2,000 calories per day with minimal staff effort. Hand feeding delivers at best several hundred calories and requires a great deal of patience, time, and effort, qualities that are in short supply these days, and because weight loss is a major negative quality indicator that is advertised
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on the Internet, the fear of being branded as a place where residents starve provides incentives to nursing homes to recommend PEG feeding, consciously or subconsciously, in selected residents. If the American Geriatrics Society is serious about curtailing the use of tube feedings, then we might assign the same negative quality indicator to the use of PEG tubes as we assign to weight loss. Such a policy, in theory, would redistribute major nutritional efforts back to the more traditional oral–hand approach. However, getting there would necessitate a paradigm shift in perception inside and outside nursing homes, and that in turn would require general acceptance of the growing body of convincing evidence.2 Edward Flaschner, MD David Katz, MD, MPH Internal Medicine Department D, Shaare Zedek Medical Center, Jerusalem, Israel
ACKNOWLEDGMENTS Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Author Contributions: Both authors are solely responsible for the contents of this letter. Sponsor’s Role: None.
REFERENCES 1. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. J Am Geriatr Soc 2014;62:1590– 1593. 2. Teno JM, Gozalo PL, Mitchell SL et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc 2012;60:1918–1921.
RESPONSE TO DR. FERNANDEZ-VIADERO AND COLLEAGUES AND DRS. FLASCHNER AND KATZ To the Editor: We appreciate the thoughts of FernandezViadero et al.1 and Flaschner and Katz2 on the recently updated and published American Geriatrics Society (AGS) Position Statement on Feeding Tube Use in Advanced Dementia. The first AGS position statement, published in 1993, was based upon preliminary scientific evidence and expert opinion. The updated statement reflects scientific advances in understanding of the natural history of advanced dementia along with a greater understanding of the outcomes associated with whether a feeding tube is placed. The preponderance of the peer-reviewed evidence demonstrates feeding tube use does not prevent aspiration or the development of aspiration pneumonia, promote wound healing, or improve survival in persons with advanced dementia. Moreover, research has shown that persons with advanced dementia and a feeding tube are more likely to develop pressure ulcers and experience burdensome care transitions (e.g., emergency department visits,
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hospitalizations) related to complications associated with feeding tube placement, such as dislodgement, clogging, and infection. One important component of the decision-making process, as Fernandez-Viadero et al. noted, is determination of remaining life expectancy, which is a challenge in dementia, but recent studies support the notion that several sentinel events in persons with advanced dementia can effectively guide prognostication and, when observed, support an overall poor prognosis. These clinical events include the development of persistent eating and swallowing difficulties. To that end, healthcare providers should educate patients and caregivers early on in the disease process about the natural progression of dementia, including the end of life, so that individuals with dementia and their caregivers can establish goals of care that are consistent with the individual’s values and preferences. For individuals with advanced dementia facing a tube feeding decision, careful hand feeding is the standard of care based upon available empirical evidence that is the embodiment of the position statement. The Choosing Wisely campaign3 lends credence to these recommendations. The campaign, sponsored by the American Board of Internal Medicine, asks specialties to identify tests or treatments that providers and patients should question; the American Geriatrics Society, American Academy of Hospice and Palliative Medicine, and American Medical Directors Association each independently listed tube feeding in advanced dementia as a treatment that should not be recommended. Although Flaschner and Katz’s feedback on reducing feeding tubes is appreciated, quality measures should promote choice and honor individuals’ preferences regarding tube feeding. Creating a measure in hopes of curtailing the use of feeding tubes would go against the autonomy of individuals to make a choice for a feeding tube based on their values and beliefs. There is an opportunity and obligation to assist individuals and their caregivers who may need to make a decision about feeding tubes using advance care planning. Quality indicators for nursing homes regarding robust advance care planning that covers several important elements, including feeding tube preferences, is recommended. The AGS intends to update the Feeding Tubes in Advanced Dementia Position Statement and is in the planning stages of what to include in the next edition. Colleagues are encouraged to submit comments and suggestions that they feel would expand the scope of the position statement to Zhenya Hurd at [email protected]. Ramona Rhodes, MD, MPH, MSCS Division of General Internal Medicine, University of Texas Southwestern Medical Center, Dallas, Texas Joseph Shega, MD VITAS Hospice Care, Miami, Florida Caroline Vitale, MD Geriatric Research, Education and Clinical Center, Ann Arbor Veterans Affairs, Ann Arbor, Michigan
LETTERS TO THE EDITOR
COMMENTS/RESPONSES SOME QUESTIONS ABOUT DEMENTIA AND TUBE FEEDINGS To the Editor: We agree with the American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee1 in that careful hand feeding should be offered to all individuals with advanced dementia. However, people with dementia must have a feeding tube placed under certain circumstances (e.g., beliefs, family burdens, family-related responsibilities, nursing home characteristics, acute hospital settings). Sometimes, surprisingly, the main and only indication for placing a feeding tube is prevention of aspiration pneumonia.2 Taking this into consideration those circumstances, we disagree that difficulty eating and feeding is associated with poor prognosis over the short term. Although the short-term prognosis, accurate prognosis of survival in advanced dementia is elusive.3 In addition, the assertion that tube feeding is associated with agitation and greater use of physical and chemical restraints is not completely correct. The setting might be completely different for individuals with dementia with a nasoenteric tube and those with percutaneous gastrostomy (PEG). In the case of nasoenteric tube, behavioral disturbances appear in many individuals and it is therefore necessary to prescribe physical or chemical (e.g., neuroleptics, benzodiazepines) restraints. In a previous letter to this journal, we reported that individuals with advanced dementia and PEG tubes did not exhibit PEG-associated behavioral disturbances and did not need any physical or chemical restrain.4 Although advanced dementia is a serious burden for health systems, professionals, relatives, and the individuals themselves we must be aware of some opinions on this topic. The individual’s comfort must be the main goal, but is an untreated individual with pneumonia, fever, or eating problems comfortable? Finally, advanced dementia is usually a complicated condition with a long trajectory. To affirm that all individuals with dementia have a terminal illness5 and therefore that use of a PEG tube must be completely excluded in elderly adults with dementia is similar to the idea described in a famous children’s story: “Sentence first—verdict afterwards.”6 Carlos Fernandez-Viadero, MD, PhD Valdecilla University Hospital, Santander, Cantabria, Spain Department of Biogerontology, School of Medicine, University of Cantabria, Cantabria, Spain Magdalena Jimenez-Sanz, RN Valdecilla University Hospital, Santander, Cantabria, Spain Rosario Verduga, MD, PhD Department of Psychobiology & Health Education, Universidad Nacional de Educaci on a Distancia, Cantabria, Spain
JULY 2015–VOL. 63, NO. 7
JAGS
Damaso Crespo, MD, PhD Department of Biogerontology, School of Medicine, University of Cantabria, Cantabria, Spain
ACKNOWLEDGMENTS Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Author Contributions: Fernandez-Viadero: study concept and design, preparation of manuscript. Jimenez-Sanz, Verduga: preparation of manuscript. Crespo: design, preparation of manuscript. Sponsor’s Role: The research group is supported in part by a grant from the Spanish Geriatrics & Gerontology Society, which had no responsibility for the concept or the idea of this letter. No funds have been diverted for this contribution.
REFERENCES 1. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc 2014;62:1590–1593. 2. Tawk MM, Elya MK. Recurrent aspiration pneumonia. N Engl J Med 2008;359:e27. 3. Mitchell SL, Black BS, Ersek M et al. Advanced dementia: State of the art and priorities for the next decade. Ann Intern Med 2012;156:45–51. 4. Fernandez-Viadero C, Pe~ na Sarabia N, Jimenez-Sanz M et al. Percutaneous endoscopic gastrotomy: Better than nasoenteric tube? J Am Geriatr Soc 2002;50:199–200. 5. Congedo M, Causarano RI, Alberti F et al. Ethical issues in end of life treatments for patients with dementia. Eur J Neurol 2010;17:774–779. 6. Carroll L. Alice’s Adventures in Wonderland. First published in 1865 by Macmillan & Co., London. Released 1866 by D. Appleton & Co., New York. A BookVirtual Digital Edition, v.1.2. Chicago, Illinois 2000. Available at https://www.adobe.com/be_en/active-use/pdf/Alice_in_Wonder land.pdf
AMERICAN GERIATRICS SOCIETY POSITION STATEMENT ON FEEDING TUBES IN ADVANCED DEMENTIA To the Editor: In its position statement on tube feeding for individuals with advanced dementia, the American Geriatrics Society maintains that in individuals with advanced dementia, observational evidence indicates that the benefits of tube feeding do not outweigh substantial associated treatment burdens.1 We would argue that, notwithstanding the evidence, it is difficult to convince nursing homes and geriatric staff that oral hand feeding is better for an individual with dementia who has stopped eating. After all, percutaneous endoscopic gastrostomy (PEG) feeding can deliver 2,000 calories per day with minimal staff effort. Hand feeding delivers at best several hundred calories and requires a great deal of patience, time, and effort, qualities that are in short supply these days, and because weight loss is a major negative quality indicator that is advertised
JAGS
JULY 2015–VOL. 63, NO. 7
on the Internet, the fear of being branded as a place where residents starve provides incentives to nursing homes to recommend PEG feeding, consciously or subconsciously, in selected residents. If the American Geriatrics Society is serious about curtailing the use of tube feedings, then we might assign the same negative quality indicator to the use of PEG tubes as we assign to weight loss. Such a policy, in theory, would redistribute major nutritional efforts back to the more traditional oral–hand approach. However, getting there would necessitate a paradigm shift in perception inside and outside nursing homes, and that in turn would require general acceptance of the growing body of convincing evidence.2 Edward Flaschner, MD David Katz, MD, MPH Internal Medicine Department D, Shaare Zedek Medical Center, Jerusalem, Israel
ACKNOWLEDGMENTS Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Author Contributions: Both authors are solely responsible for the contents of this letter. Sponsor’s Role: None.
REFERENCES 1. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. J Am Geriatr Soc 2014;62:1590– 1593. 2. Teno JM, Gozalo PL, Mitchell SL et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc 2012;60:1918–1921.
RESPONSE TO DR. FERNANDEZ-VIADERO AND COLLEAGUES AND DRS. FLASCHNER AND KATZ To the Editor: We appreciate the thoughts of FernandezViadero et al.1 and Flaschner and Katz2 on the recently updated and published American Geriatrics Society (AGS) Position Statement on Feeding Tube Use in Advanced Dementia. The first AGS position statement, published in 1993, was based upon preliminary scientific evidence and expert opinion. The updated statement reflects scientific advances in understanding of the natural history of advanced dementia along with a greater understanding of the outcomes associated with whether a feeding tube is placed. The preponderance of the peer-reviewed evidence demonstrates feeding tube use does not prevent aspiration or the development of aspiration pneumonia, promote wound healing, or improve survival in persons with advanced dementia. Moreover, research has shown that persons with advanced dementia and a feeding tube are more likely to develop pressure ulcers and experience burdensome care transitions (e.g., emergency department visits,
LETTERS TO THE EDITOR
1491
hospitalizations) related to complications associated with feeding tube placement, such as dislodgement, clogging, and infection. One important component of the decision-making process, as Fernandez-Viadero et al. noted, is determination of remaining life expectancy, which is a challenge in dementia, but recent studies support the notion that several sentinel events in persons with advanced dementia can effectively guide prognostication and, when observed, support an overall poor prognosis. These clinical events include the development of persistent eating and swallowing difficulties. To that end, healthcare providers should educate patients and caregivers early on in the disease process about the natural progression of dementia, including the end of life, so that individuals with dementia and their caregivers can establish goals of care that are consistent with the individual’s values and preferences. For individuals with advanced dementia facing a tube feeding decision, careful hand feeding is the standard of care based upon available empirical evidence that is the embodiment of the position statement. The Choosing Wisely campaign3 lends credence to these recommendations. The campaign, sponsored by the American Board of Internal Medicine, asks specialties to identify tests or treatments that providers and patients should question; the American Geriatrics Society, American Academy of Hospice and Palliative Medicine, and American Medical Directors Association each independently listed tube feeding in advanced dementia as a treatment that should not be recommended. Although Flaschner and Katz’s feedback on reducing feeding tubes is appreciated, quality measures should promote choice and honor individuals’ preferences regarding tube feeding. Creating a measure in hopes of curtailing the use of feeding tubes would go against the autonomy of individuals to make a choice for a feeding tube based on their values and beliefs. There is an opportunity and obligation to assist individuals and their caregivers who may need to make a decision about feeding tubes using advance care planning. Quality indicators for nursing homes regarding robust advance care planning that covers several important elements, including feeding tube preferences, is recommended. The AGS intends to update the Feeding Tubes in Advanced Dementia Position Statement and is in the planning stages of what to include in the next edition. Colleagues are encouraged to submit comments and suggestions that they feel would expand the scope of the position statement to Zhenya Hurd at [email protected]. Ramona Rhodes, MD, MPH, MSCS Division of General Internal Medicine, University of Texas Southwestern Medical Center, Dallas, Texas Joseph Shega, MD VITAS Hospice Care, Miami, Florida Caroline Vitale, MD Geriatric Research, Education and Clinical Center, Ann Arbor Veterans Affairs, Ann Arbor, Michigan
