Tube Feeding in End-Stage Dementia: Shifting the Conversation From Emotional to Rational Decision-Making

Associate Physician Editor, Clinical Geriatrics^®

Dr. Spivack is Founder, Connecticut Geriatrics Society; Medical Staff, Greenwich Hospital, Greenwich, CT
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Geriatricians and other healthcare professionals who care for older adults with dementia are often confronted with difficult questions and issues raised by both patients and their family members. These questions and issues cover a wide range—including how to best clarify and meet the patient’s goals of care. Ideally, these and other important issues are addressed early, maximizing the extent to which the patient and his or her loved ones can play key roles in decision-making.

Unfortunately, this doesn’t always happen. Consider how many of us have, when in institutionalized settings, heard a care team member say, “Your mother has lost some weight and isn’t eating enough; do you want us to put in a feeding tube?”

When the decision to insert a percutaneous feeding tube is presented in this way—with little or no discussion about alternatives and without consideration of new findings regarding the outcomes of tube feeding—family members may make uninformed and emotional decisions that are neither based on medical evidence nor in keeping with the goals of care.

While feeding tube use was intended to prevent adverse outcomes such as malnutrition, and to delay mortality among older patients with end-stage dementia, current research suggests this procedure doesn’t achieve these goals. According to the latest findings, tube feeding neither prevents nor improves the healing of pressure ulcers in these patients, and increases, rather than lowers, their risks of aspiration pneumonia. In addition, new research finds that tube insertion may also cause discomfort¹ and agitation,² and lead to other complications. These include the dislodgement and clogging of the tubes, which often results in emergency department visits and hospitalizations.¹ In contrast, careful hand-feeding has now been shown to both lower risks of aspiration pneumonia and to increase comfort among older adults with severe dementia.²

Based on the latest research, the American Geriatrics Society’s (AGS) Ethics and Clinical Practice and Models of Care committees recently updated the society’s Position Statement on Feeding Tubes in Advanced Dementia. I strongly urge you to review this important, brief statement and to share it with those who work with you and with other colleagues. In addition to providing information about current research germane to this issue, the new statement helps frame discussions about key end-of life issues for patients and family members alike. The statement includes the following five positions:

• Percutaneous feeding tubes are not recommended for older adults with advanced dementia. Careful hand-feeding should be offered; for persons with advanced dementia, hand feeding is at least as good as tube-feeding for the outcomes of death, aspiration pneumonia, functional status and patient comfort. Tube feeding is associated with agitation, increased use of physical and chemical restraints, and worsening pressure ulcers.
• Efforts to enhance oral feeding by altering the environment and creating patient-centered approaches to feedings should be part of usual care for older adults with advanced dementia.
• Tube feeding is a medical therapy that can be declined or accepted by a patient’s surrogate decision maker in accordance with advance directives, previously stated wishes, or what it is thought the patient would like.
• It is the responsibility of all members of the healthcare team caring for residents in long-term care settings to understand any previously expressed wishes of the patient (through review of advance directives and with surrogate caregivers) regarding tube feeding and to incorporate these wishes into the care plan.
• Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision-making, and honor patient preferences regarding tube feeding. They should not impose obligations or exert pressure on patients or providers to institute tube feeding.

The full text of the updated position statement—including commentary and the rationale for each of the five positions—is available at www.americangeriatrics.org/files/documents/feeding.tubes.advanced.dementia.pdf. I suggest you read both the statement and additional information about the AGS’ position.

As part of the American Board of Internal Medicine’s (ABIM) ongoing Choosing Wisely^® campaign, the AGS and the American Academy of Hospice and Palliative Medicine (AAHPM) both included, in their lists of “Five Things Physicians and Patients Should Question,” a recommendation that percutaneous feeding tubes not be used in patients with advanced dementia, and a statement that careful hand feeding is a safer alternative. More information about the AGS’ Choosing Wisely recommendations, and supporting information for professionals, patients and caregivers, can be found on the AGS Website. These resources include an easy to understand educational piece about feeding tubes from Consumer Reports Health, which is partnering with the ABIM and participating medical societies to develop and disseminate health information for the public based on the Choosing Wisely recommendations.

Better armed with these resources about feeding tubes, clinicians can more easily start the conversation with patients and their family members. We can place the discussion appropriately within the context of goals of care, and ensure that families know that their loved ones will not be hungry or uncomfortable, and that hand feeding will be offered. Our role is to drive decision-making more rationally and ensure high value care and, hopefully, successfully impact the unreasonably high prevalence of feeding tube use in older adults with advanced dementia in doing so.

On one last but germane issue, research also indicates that hospice referral and palliative care referral are usually appropriate when there is any discussion about feeding tubes. In light of this I’d like to mention the excellent Henderson Lecture that Diane Meier, MD, presented during the AGS Annual Scientific Meeting in May. In the lecture, Dr. Meier suggested that clinicians ask themselves the “Surprise Question” when determining whether to refer an older patient to hospice sooner or later. The question is: “Would you be surprised if this patient died in the next 12 months?” Thought-provoking, isn’t it? For more about palliative care and related issues, I hope you’ll review the November 2011 issue of the Journal of Palliative Medicine and take a look at “Identifying Patients in Need of a Palliative Care” by Dr. Meier and David E. Weissman, MD.

References

1. American Geriatrics Society. Feeding Tubes in Advanced Dementia Position Statement. www.americangeriatrics.org/files/documents/feeding.tubes.advanced.dementia.pdf. Accessed July 2, 2013.
2. AGS Choosing Wisely Workgroup. American Geriatrics Society identifies five things that healthcare providers and patients should question. J Am Geriatr Soc. 2013;61(4):622-631.