Judicious Feeding Options at the End of Life

By Mike Bassett

In some states, patients can sign directives that allow refusal of feeding when the end of life approaches.

In 2013, the family of 82-year-old Alzheimer's patient Margaret Bentley filed a suit against a British Columbia nursing home alleging that it had committed battery by continuing to spoon-feed her, contrary to the wishes she expressed in a living will. The case ultimately worked its way to the British Court of Appeal, where the court affirmed that the nursing home was required to continue to offer food and fluids to Bentley.

According to the court, the patient would eat when prompted by a caregiver putting a spoon to her mouth, but the family believed that she ate and drank reflexively and was not consenting to be being fed. The Court of Appeal upheld the original court decision, holding that Bentley indicated consent by accepting nourishment when it was offered to her. Bentley passed away in November 2016, 17 years after being diagnosed with Alzheimer's.

Making an Informed Choice
With cases like this in mind, End of Life Washington—a nonprofit organization that assists individuals using the state's 2009 Death with Dignity Act—has issued a form and guidelines for people who want to provide instructions for stopping eating and drinking at the end of life.

Sally McLaughlin, executive director of End of Life Washington, points out that Washington's Death with Dignity Act requires a person to be mentally competent to choose a hastened death. But by definition, people with serious dementia are unable to make an informed decision on this subject.

This means that in the case of a decision to voluntarily stop eating and drinking, a person must make such a decision while he or she possesses sufficient cognitive ability to make an informed decision. However, according to McLaughlin, as in the case of the nursing home in British Columbia, caregivers sometimes believe it's their duty to feed a person regardless of his or her stated wishes. 

With that in mind, End of Life Washington has drafted "My Instructions for Oral Feeding and Drinking," a document that is similar to an advance directive expressing a person's wishes concerning when to be offered food and drink during late-stage dementia.

The instructions specify conditions that should be interpreted by caregivers as a patient's desire to stop eating and drinking and include the following:

• I appear to be indifferent to being fed.
• I no longer appear to desire to eat or drink.
• I do not willingly open my mouth.
• I turn my head away or try to avoid being fed or given fluids in any other way.
• I spit out food or fluids.
• I begin a pattern of coughing, gagging, or choking on or aspirating food or fluids.
• The negative medical consequences or symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.

Is There a Down Side?
Stephen Drake, a research analyst for Not Dead Yet, a disability rights group that opposes legalization of assisted suicide and euthanasia, calls the guidelines a "door-opening strategy" and fears the ultimate aim of a document like this is to broaden the conditions under which patients will no longer be provided with oral eating and drinking assistance.

On the other hand, McLaughlin and her colleagues at End of Life Washington believe the guidelines offer a way of helping people deal with the uncertainties that surround the issue of assisted feeding at the end of life.

McLaughlin notes that while the document is signed, witnessed, and notarized, it's not a binding legal document. "Any kind of documentation beats no documentation, but it hasn't been challenged legally, unlike an advance directive where you can really say that's a legal document," she says. "Our hope is that it would be honored."

And that should be an important consideration for anyone issuing end-of-life instructions, says Beth Kallmyer, MSW, vice president of constituent services for the Alzheimer's Association. "When I talk to family members about choosing someone to be a health care power of attorney, I'll often ask how confident they are that that person will be able to follow their wishes," Kallmyer says. "We're advocates for people not only filling out a health care power of attorney but also having discussions with that person—whoever it is—about what he or she would like to have happen at the end of life should he or she be unable to communicate those wishes clearly."

Undesirable Alternatives
An alternative to assisted oral feeding and drinking is tube feeding, which the Alzheimer's Association opposes for persons with Alzheimer's disease and other dementias.

The society maintains that in comparison with careful hand feeding, tube feeding neither improves nutritional status nor prevents or lowers the incidence of aspiration pneumonia. On the other hand, the society points out that there are clear disadvantages to tube feeding, such as having to restrain a patient because of the possibility he or she will pull the tube out of the nose or abdomen.

"We support the idea of comfort feeding [by hand], offering it to the patient as long as he or she is able to swallow and tolerate it," Kallmyer says. "At some point they're unable to swallow, and you don't want to give them something that will cause them to aspirate; and at that point you move to comfort measures and keeping their mouths moist. Typically that's in the last week or two of life."

A Matter of Interpretation
In the British Columbia case, the patient's family maintained that Bentley ate and drank reflexively and did not indicate consent to being fed. A person signing the End of Life Washington instructions for oral feeding directs that "[n]o matter what my condition appears to be, I do not want to be cajoled, harassed, or forced to eat or drink. I do not want the reflexive opening of my mouth to be interpreted as giving my consent to being fed or given drink or misinterpreted as a desire for food or drink."

How can it be determined whether a person chooses not to eat or drink? "It's pretty obvious when it's happening," Kallmyer says. "You offer food and drink as long as they are able to do it safely. They might shake their heads or won't open their mouths, and if they push it away, it's a pretty clear sign they don't want it. It doesn't mean you can't come back in an hour or two and try again," she adds.

Drake believes guidelines like these mean that "anyone who is dependent on hand feeding is vulnerable to having it discontinued." He suggests that concerns about patients being fed against their will are misplaced. "I have to believe that people pushing this live in a real bubble," Drake says. "Everyone I've talked to about nursing homes tell me that the question is not whether people are being force fed, but whether [caregivers] have enough time to feed them with all of the issues they have with people with Alzheimer's. Most people are struggling to get enough care in those kinds of settings."

Drake says there are just too many variables associated with feeding people with Alzheimer's disease or dementia that confuse the issue of whether a person is actually refusing food or drink. "Maybe they don't like the person who's trying to feed them, or they don't like the food," he suggests. "How do you determine that they're making a real sustained effort to say, 'I don't want to eat any more'?"

Instead, Drake calls the Washington End of Life guidelines "a solution in search of a problem," and says the real issue is making sure nursing homes have enough funding to provide proper care for their residents. He says this includes having sufficient staff to ensure caregivers have time to properly feed those residents.

With the potential for Medicare reductions in the future, Drake believes the problems facing families of Alzheimer's and dementia patients "won't be that persons are being force fed in nursing homes, but that people are being slowly starved to death."

— Mike Bassett is a freelance writer based in Holliston, Massachusetts.