In my last article, I discussed making your wishes for treatment known in the event that you are unable to communicate those wishes. I have been asked to elaborate on the use of tube feedings in the advanced dementia population.
The most effective way to communicate wishes is through a living will and advanced directives. Maryland also utilizes a form called the "MOLST" or Maryland Orders for Life Sustaining Treatment. The MOLST, which was implemented in 2011, has replaced the old DNR or Do Not Resuscitate order with a more comprehensive and thorough list of wishes in various circumstances that indicate your preferences for treatment in the event that you are not able to make those wishes known.
The MOLST, which includes wishes regarding placement of a feeding tube, increases the likelihood that a patient's wishes are honored. It is a consolidated document based on wishes in the living will. The MOLST form is valid in all health care settings.
While the decision whether to place a feeding tube in a patient with advanced dementia can be influenced by cultural or religious values, each individual should choose whether they would want a feeding tube placed in the event of various health situations — including advanced dementia.
The issue of feeding tube placement has become such a difficult and heated subject (especially in the advanced dementia population) over the past several years that the American Geriatric Society issued a position statement on feeding tubes in advanced dementia in May 2013.
The AGS supports the following positions:
1.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.
2. Efforts to enhance oral feeding by altering the environment and creating patient¿centered approaches to feeding should be part of usual care for older adults with advanced dementia.
3. 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 want.
4. 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 incorporate these wishes into the care plan.
5. 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.
Alzheimer's disease and related dementias, caused by a neurodegenerative disease process, causes decline in all bodily functions. It is important for family members who may be confronted with making difficult decisions about feeding tube placement in the event that wishes are not shared in a MOLST or living will consider that the person affected by dementia eventually loses the motor ability to suck, chew and swallow and consequently will have increasing difficulty eating and swallowing. The risk of aspiration of food and drink increases as the disease progresses. The body, as it starts to shut down, loses the desire to eat.
It's often difficult for family members to make the decision to decline a feeding tube when their loved one can no longer eat. However, understanding the process can reassure family members that their decisions are made out of knowledge of the process and the desire to provide the best quality of life for their loved one.
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Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.