Honoring A Loved One’s Resistance To Food When Dying

Honoring a loved one’s resistance to food when they’re dying is one of the hardest parts of the process. Food and nourishment are associated with love, connection, and memory-making. Unfortunately, it can also feel like participating in their resistance to food means accepting the unacceptable or somehow contributing to their death. 

Neither of these is true.

Lack Of Appetite & Resistance To Food Is Part Of The Dying Process

Historically, humans understood that death from disease or aging included an inevitable retreat from “normal life.” This retreat may start with a loss of vision or hearing, which makes outside events less interesting. It spreads to a shrinking appetite and eventually leads to a complete (if not near complete) disinterest in food altogether. Towards the end, the retreat continues inward until the life we are officially disconnected from the physical form we’ve taken thus far. We appreciate the words of hospice nurse and educator Barbara Karnes, who says: It isn’t that the person doesn’t want to eat. They usually try but state they just “can’t” eat. This is because eating or not eating has nothing to do with the personality choosing to eat or not. It has to do with the body releasing its hold on this physical plane.  In other words, lack of appetite and disinterest in food (or the outside world) is a normal part of the dying process, and the letting go of the body that process requires. “Letting go” almost always involves:

• Diminishing appetite (this may begin years or months before a person physically dies).
• Less desire in leaving the home or in “outward” activities.
• Spending more time in quiet reflection or processing memories and events.
• Sleeping more.
• Spending days or hours in an unconscious, non-responsive state.

The more we understand the role of waning appetite and the natural death process, the better we can support the ones we love as they die.

Forcing Food (Or Guilt Feeding) Causes More Harm Than Good

This waning appetite typically begins with eating less meat and heavy foods. You might notice that mom eats all of the jello or sips the broth but leaves most of the larger or tougher parts of a meal behind. After a time, she’ll only want broths or liquids. On a good day, she may request or enjoy some bites of ice cream or a shake but rarely finishes it. In addition to being a natural response to dying, this lack of appetite and food-specific desires directly correlates to the body’s digestive system. Physical organs, systems, and processes slow down and then shut down as we die. Eating foods that can’t be digested leads to physical discomfort, including nausea or cramping. It can also lead to constipation or diarrhea, which have their own unpleasant consequences. That’s a horrible way to spend time at the end of life. If constipation results, the remedies and treatments (especially if it leads to impaction) are incredibly uncomfortable (often painful) and compromise a person’s dignity. By honoring a loved one’s resistance to food, we also honor what they can and cannot handle and allow them to die in greater comfort.

Forgoing Food Is A Peaceful Way To Go

In some cases, patients choose to voluntarily stop eating as a way to allow the inevitable to come. This is common for those who have been kept alive via medical treatment or plans and curative medicines that no longer provide treatment, a cure, or high quality of life. This is also an option for people who no longer want a feeding tube or accept they’re dying and no longer want to prolong dying by forcing themselves to eat and drink when they either can’t or don’t feel like it. If the person is ready to cease treatment and isn’t feeling hungry anyway, voluntarily stopping eating and drinking (VSED) is a natural choice. As we cited above, when the body no longer wants food, or can’t process food, it’s not hard to stop eating or drinking. In fact, patients who cease eating with the support of their families have some of the most meaningful and peaceful last weeks and days because the energy in their space turns from “treatment” and “doing-based” action to the more spacious energy of connection, “being,” and reverence for the precious time remaining. The good news about VSED is that people can change their minds at any time and begin drinking fluids and eating again whenever they wish. In that case, we hope their return to eating and drinking is 100% their choice and not out of obligation to family members or loved ones pressuring them otherwise.

Tips For Supporting A Dying Loved One’s Refusal To Eat

Again, it’s not always easy to stand by when a dying loved one no longer wants food or water. However, it’s our experience that the most peaceful and meaningful deaths are those where the one who is dying is respected, and those who surround them dedicate themselves to supporting whatever needs arise. Here are tips on how to support your dying loved one when they resist food or refuses to eat.

Enlist the support of your hospice team

Your hospice team is there to support you in every way. Lean on us when you need to. We’re here to remind you that what is happening is completely normal, to provide resources around whatever arises, and offer comfort care accommodations as needed.

When there is resistance to food offer it but do not pressure

It’s always fine to offer food and drinks. Sometimes a person may go several meals or several days without food and then say yes to some sips of a favorite soup or suck on a popsicle.  So, we recommend offering sips, light foods or snacks, and small treats as you would normally, but graciously respond to refusals to prevent your loved one from feeling pressured or guilted into consuming food when they don’t want to. Also, the standard three meals a day are overwhelming in most cases. Instead, shift to smaller and more frequent food offerings.

Review (or create) an end-of-life plan

The more you and a loved one include in your end-of-life plan, the easier it is for others to honor those wishes. If you don’t have an end-of-life plan in place, consider creating one. Feel free to use our Questions to Ask to Prepare Your End-of-Life Plan to start the process. Then, share that plan with your hospice team and closest loved ones so everyone understands your wishes.  If you already notice a declining appetite, consider adding something specific about not wanting to feel pressure around eating and drinking.

Use damp oral swabs to keep the mouth moist

Once a person is no longer drinking or drinking very little, their mouth becomes understandably dry. You can use dampened oral swabs to moisten the mouth as desired or needed to combat this uncomfortable side effect. For this purpose, we recommend getting swabs without mouthwash or flavoring. If that’s all you can find, dilute them first and use pressure against a dry surface to remove excess water before swabbing the mouth. Your hospice nurse can provide swabs for you or have them delivered. These swabs are also available online and in drug stores. Keep a lip salve handy and apply a light coating on the lips after the mouth is swabbed to prevent chapping. Here is a video explaining how to do this if you don’t have a hospice care team on board.

Connect With Us For End-Of-Life Support

Are you facing an end-of-life diagnosis? Has an aging loved one seemed to retreat from normal activities or eating regular meals? Connect with Hospice of the Golden Isles. After hearing about your experience, we can make recommendations on whether or not hospice support can help. Hospice provides 24/7 access to information, advice, and support to ensure you’re never left with unanswered questions – including what to do when a loved one stops eating.