Most dementia directives call for voluntarily stopping eating and drinking (VSED) at a prescribed point late in the progression of dementia. In most cases, this requires eliminating hand feeding based on the proposition that hand feeding is a medical treatment or medical care. Whether hand feeding is or is not medical treatment or care is a critical issue that needs to be resolved to assure that such dementia directives will be honored.
In 2003, the Bush administration made it possible, through a change in federal regulations, to use volunteers and others with lower skills than nurses or nurse aides to feed patients who had no “medically complicated feeding problems.” Most advanced dementia patients do have medically complicated feeding problems, however, and need hand feeding by more thoroughly trained medical staff. Both nursing literature and state and federal regulations clarify the medical character of hand feeding, whether done by feeding assistants or nurses.
The publication Nursing Times, for instance, explains concerns with hand feeding a disabled population, including those with advanced dementia:
Patients with swallowing problems can include those with cancer, stroke affecting the motor cortex or the deglutition centre, Parkinson’s disease, arthritis and some muscular disorders. Medications, such as antihypertensives and diuretics, can cause dryness of the mouth. In patients with dementia, feeding difficulties change as the condition progresses. These may range from refusal to eat, turning the head away, keeping the mouth closed, spitting out food to leaving the mouth open and not swallowing. If patients can feed themselves they need encouragement and monitoring. If they are to be fed, it is important this should be done safely.
The article concludes with these warnings:
Many people assume that anyone can assist another to eat. However, feeding a patient is not a simple procedure that can be assigned to a junior member of staff without experience. Nurses need to be taught how to do it, what the problems are and how they might be overcome. Most importantly, they need to know the danger signs and when help is needed.
The new regulations only allowed trained feeding assistants to feed patients without “medically complicated feeding problems” as determined by medical personnel. Patients in this category continue to require hand feeding by a licensed health care professional, such as a registered nurse or certified nurse aide. When feeding assistants do hand feeding, they must work under the direct supervision of a registered nurse or licensed practical nurse in a dining room or other common area.
Even though federal regulations changed seventeen years ago, states were free to enact their own, often more stringent, regulations to implement the changes. For instance, in 2005, Colorado established regulations on who could train feeding assistants, who had to complete a 12-hour course, though federal regulations required only 8 hours of training:
Instructors must have appropriate experience in feeding and hydrating residents and must possess one of the following:
• A valid Colorado License to Practice as a Registered or Practical Nurse;
• A valid certificate of Registered Dietitian through the commission on Dietetic Registration;
• A valid certificate of Speech-Language Pathologist through the American Speech-Language-Hearing Association; or,
• A valid certificate of Registered Occupational Therapist through theNational Board for Certification in Occupational Therapy.
Colorado also included the following requirements in their training regimine:
Feeding Assistants must work under the supervision of and report to a registered or licensed practical nurse. Each Feeding Assistant shall be given instruction by a registered nurse, licensed practical nurse or registered dietitian concerning the specific feeding and hydration needs of each resident the feeding assistant will be assigned to assist.
The Colorado training curriculum is divided into eight modules to comply with the minimum training course contents identified in the federal regulation:
• Assisting with Feeding and Hydration
• Feeding Techniques
• Communication and Interpersonal Skills
• Appropriate Responses to Resident Behavior
• Recognizing Changes in Residents
• Safety and Emergency Procedures including the Heimlich Maneuver
• Infection Control
• Resident Rights
In 2013, the Texas Health and Human Services department developed a 13-hour course, “Feeding Assistant Training.” The training is detailed in a 95-page document. The one constant throughout the program is that the feeding assistant is always supervised by a nurse.
In some states, feeding assistance training is part of the standard curriculum for Certified Nursing Assistants. There is widespread recognition that such training is necessary to teach feeding assistants how to properly and safely feed dementia patients.
The National Center for Biotechnology Information distributes information and research about problems in geriatrics and related fields. In one such study in 2017, the skills necessary to properly feed a dementia patient were identified:
Achieving successful mealtimes for a resident with dementia requires a unique set of skills:
(1) managing dysphagia and risk for aspiration;
(2) interpreting and managing feeding behaviors (e.g., turning the head away, clamping the mouth shut); and
(3) promoting independence in eating while providing adequate supportive handfeeding assistance to maintain nutritional intake.
Current training standards do not address effectiveness for specific handfeeding techniques and/or how a handfeeding technique may impact feeding behavior. Practice guidelines recommend two handfeeding techniques: Direct Hand (DH) and Over Hand (OH). A third technique exists, Under Hand (UH), and is theorized to elicit fewer feeding behaviors.
Research in 2011 reported in the American Journal of Nursing identified Certified Nursing Assistants (CNAs) with appropriate training as the personnel who should feed dementia patients and recognized the complexities involved with feeding dementia patients, suggesting that appropriate training is needed to accomplish the task effectively and safely:
Feeding difficulties faced by patients with dementia are common, multifactorial, and threaten both fluid and nutritional intake. To be successful, assessment and intervention strategies must account for the cognitive, physical, psychological, social, environmental, and cultural factors that can contribute to, reduce, or prevent these difficulties. Such strategies require a multidisciplinary approach that includes nurses; CNAs; occupational, physical, and speech therapists; patients’ family members; and, possibly, nonnurse feeding assistants.
In 2019, an international healthcare conference reported research that showed important benefits from hand feeding training:
More than 90% of respondents reported that the workshop [on hand feeding skills] can enhance their understanding on swallowing and feeding disorders in dementia and awareness on careful hand feeding skills for this population. The careful hand feeding skills training program for community nurses was found to be effective in improving participants’ knowledge and skills in handling careful hand feeding patients.
In spite of allowing the use of feeding assistants for some patients, the Centers for Medicare & Medicaid Services (CMS) stated in its 2003 regulation that
The reason for this existing policy [requiring a licensed health care professional or certified nurse aide to perform nursing or nursing-related functions] is to ensure that residents who cannot, or do not, feed themselves are fed by nursing staff who have medical training. This is intended to protect residents from unskilled workers who might injure a resident by not recognizing serious medical complications associated with eating.
It should be clear–from CMS’s own statement, from the training required of feeding assistants by federal and state regulations, from the supervision required of feeding assistants by nurses, and from the efforts of the states to provide extensive training done by medical personnel–that hand feeding is medical care. If so, it is a procedure or care that can be addressed in advance directives; that is, we may accept such care or we may reject such care.
This conclusion strengthens the case for rejecting food and fluids by hand feeding in dementia directives for those who do not want to live through the later stages of dementia and no longer feed themselves.
Yes and no. How can hand feeding be medical care when family members of residents of assisted living centers and nursing homes do it for their parents, siblings, spouses, and long-time partners routinely? Before COVID-19 prevented viisits to these facilities, I saw it happen every day. Some people were so dedicated that they showed up nearly *every day* (a few every day or even more than once a day) to feed their loved one, even pureed food for people who were practically toothless. These people have the patients of saints. I don’t and now just bring him snacks he can eat by himself.
In his nearly five years as a resident, I have seen many residents likely die because they have advanced directives stating that they wish to decline aggressive medical treatment as death draws near. I know for certain that some stated that they don’t want hospitalization for what are probably treatable conditions (their surviving family members told me after the fact). The facility allows refusal of feeding tubes once swallowing even pureed food and liquids is impossible. My husband’s first roommate was still competent enough to refuse dialysis for kidney failure. But I know of *no one* who has died to die by deliberately stoppng eating and drinking. (or been allowed to die by doing so). It is a secular facility, but most of the staff are religious, either Christian or Muslim. Most would probably refuse to participate on conscience grounds and likely be allowed to do so. It’s possible that a resident has died in this manner by transferring to a family’s member home and getting a hospice willing to participate, however, and that done on thr QT.
FROM Nursinghomehelp.org:
The Interpretive Guidelines for Federal regulations found at §483.75(e), F493 state,
“Volunteers are not nurse aides and do not come under nurse aide training provisions…”
This requirement in its entirety reads:
§483.75(e) Required Training of Nursing Aides (1) Definitions “Licensed health professional” means a physician; physician assistant; nurse practitioner; physical, speech, or occupational therapist; physical or occupational therapy assistant; registered professional nurse; licensed practical nurse; or licensed or certified social worker. “Nurse aide” means any individual providing nursing or nursing-related services to residents in a facility who is not a licensed health professional, a registered dietitian, or someone who volunteers to provide such services without pay. Interpretive Guidelines §483.75(e) Volunteers are not nurse aides and do not come under the nurse aide training provisions of these requirements. Unpaid students in nursing education programs who use facilities as clinical practice sites under the direct supervision of an RN are considered volunteers. Private duty nurse aides who are not employed or utilized by the facility on a contract, per diem, leased or other basis, do not come under the nurse aide training provisions.
NOTE: Although the regulations are clear and volunteers can feed residents, please keep in mind other legal obligations such as the Nurse Practice Act which requires the nurse to delegate duties if he/she is sure that the person is knowledgeable in performing the task delegated. Another
regulation to consider is Administrator 24/7 Protective Oversight. Utilizing volunteers to assist with feeding of resident’s could be of great value especially for the resident in regards to social interactions and relationship building but the facility must ensure resident safety under all circumstances to the extent possible.
Although it’s not required, I would recommend formal training for your family and volunteers. Code of Federal Regulations 483.160 allows for paid feeding assistants in certified facilities in Missouri. The paid feeding assistant does not have to be a certified nurse assistant. The information found at https://health.mo.gov/safety/cnaregistry/feedassistant.php could be used to train your volunteer force. Another good resource to use as a training tool, Dining Assistant Programs in Nursing Homes: Guidelines for Implementation can be found at
https://health.mo.gov/safety/cnaregistry/pdf/DiningAsstManual.pdf
Lamar,
That is a great idea. Once our governor and state health director allows nursing homes and assisted living centers to have visitors again, I will let the Director of Nursing and Administrator at my husband’s facility know about know about this. There are probably people like me who may shy away from feeding a loved one because we are afraid of doing it wrong.
We might be able to have a training session at one of our Family Council meetings for those interested.
Thanks again,
Sue