For the old
Elderly patients with dementia, including from Alzheimer’s disease, often revert to a childlike state. They can no longer walk, are incontinent, and eventually can lose the ability to swallow. This vulnerable status often creeps up on family members with little or no warning and leads to ethical concerns about when it is appropriate to withdraw or withhold artificial feeding and fluids.
Unlike cancer patients, Alzheimer’s patients’ bodies still can use nutrition. "This makes it more difficult for family members to say, This is it. This is the point where we should no longer attempt to feed the patient,’" says Cheryl Moxley, RD, LD, a clinical utrition specialist at the Washington (DC) Hospital Center.
Families and caregivers of Alzheimer’s patients have special educational needs for end-of-life decision making, says Barbara Gerber, MSW, who is director of social services at the Washington (DC) Home. In turn, the patients often require intense one-on-one care. She offers these suggestions for working with these patients and preventing ethical conflicts:
• Discuss all treatment options, including artificial feeding and hydration, with patients while they can still make personal choices.
"It is much easier for the family and the staff to withdraw artificial nutrition when they know that this is what the patient would want," she says.
Most of her long-term care facility’s elderly patients have advance directives that include wishes regarding this care option. Many of these patients, unlike their younger counterparts in the skilled care setting, say they do not want to be artificially fed if and when the time comes. Gerber says this sentiment usually stems from having seen a spouse go through the experience of tube feeding.
• Educate family members about the course of dementia.
Tell them that eventually their loved one may no longer be able to swallow or recognize food. Explain that the patient will die of the disease process, not from starvation. Use simple language so families can understand the pros and cons of artificial nutrition and hydration.
• Make staffing adjustments. Serve meals at two separate times. That way, nursing assistants can spend mealtimes with patients who don’t need hands-on assistance and then give special attention to dementia patients, who will eat more with help and encouragement.
In some nursing homes, staff shortages may cause pressure to use feeding tubes. Ask the family to visit during mealtimes and assist with feeding. Patients are sometimes more willing to take food from a loved one than from staff. Offer food even when the patient may refuse. Modify meals to include foods the patient likes.
• Offer reading materials on the subject to both family members and staff.
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