It's Okay Not To Eat! Food At End of Life

FOOD! We eat to live. It sustains living. Everyone and everything needs some form of food, of nourishment, to maintain life. Animals (and that includes humans), plants, insects, all need some form of food to live. It seems that with humans, we add to the nourishment aspect of eating a social component as well as an emotional one. We socialize with food. We show love with food.

My husband Jack has been dead eight months. In processing the five months from his diagnosis to his death, what stands out most for me is the tension that surrounded food. AND I KNEW BETTER!

As his body was declining, I experienced a driving intensity to feed him. He ate less and less, while I pleaded, badgered, coaxed, and pushed food on him. His not eating “enough” became our biggest point of tension. I never said, “You are dying and you need to eat,” but I was thinking it.

One day after a particularly tense session of his not eating and my strongly encouraging him to eat, I left the room in tears. It was then that I saw the obvious: I was trying to keep him alive while his body was preparing to die. Even with all my knowledge of end of life, my husband was going to die and my feeding him wasn’t going to change the outcome. It was only making this precious time together more challenging and disruptive.

I‘ve thought about my reactions. If I felt this frustration and even panic with all the knowledge and experience that I have, how do others, without the knowledge, cope? Probably poorly. SO I wrote a booklet, Always Offer, Never Force. This short booklet is in the format of my others. It addresses eating and not eating as end of life approaches, with some nutritional guidelines as well as what foods to offer. 

Just as there are new rules in pain management, in sleep, in socialization at end of life, there are new rules for eating. My hope is that by reading about the normal progression of eating to not eating and what to do to help our special person during that time, my booklet can guide and support others as they journey this challenging road toward life’s conclusion.

How do I see Always Offer, Never Force being used?

  • Always Offer, Never Force is a companion to Gone From My Sight and The Eleventh Hour.
  • Include it with the initial hand out materials.
  • Read it with families and caregivers as a teaching tool. 
  • Brand it with your agency name and logo.
  • It is not just for Hospice use, but for Palliative Care programs and End of Life Doulas, as well.

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6 comments

Gabe N.
You’re completely right that food is much more than nutrition. It has strong ties to culture, to family and community, and is a common way to show love. In working with hospice patients, I’ve found that loved ones have the hardest time when eating stops. Their loved one is unwell and they don’t know how to make them feel better, and preparing their favorite foods keeps them busy and makes them feel like they’re helping. I’ve found myself discussing how when we get sick we often don’t have an appetite for a few days, and it doesn’t preoccupy us or cause us discomfort. This is likely what their loved one is experiencing. However, before intake decreases, food can actually be a fun topic in hospice. Been on a strict diabetic diet for 30 years? Guess what, you can have anything you want now! And I can confirm, ice cream is a favorite at the end of life.
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BK Books replied:
Hi Gabe, thank you for sharing your knowledge. Blessings to you in the work you are doing. Barbara
Lee Riner

When my husband and I were taking care of 86 yr old Dad, the situation with my sister, who lived 8 hrs away, grew more tense. When I told her we were giving Dad lots of ice cream, she became incensed, “Ice cream is full of sugar”, that is bad for you, she said. I would prepare plates of food for Dad, that never got eaten, it all went in the trash. But Dad ate ice cream. He seemed to savor it, with a smile.
And then when Mom started to pass, at 92, I would prepare her toast in the morning, she loved it. She was staying at my sister’s house. My sister did not offer anything, and Mom did not eat anything for days, just water and sleep. At the time, I knew that Mom eating toast would keep her alive longer, and my sister had been care taking Mom for years. It had been rough for my sister. I should have just left the house, and not interfered with my sister’s procedures for Mom. But Mom and I did enjoy a bite of buttered toast for several weeks while I was there, then I left. A sad time, but we got the opportunity to share some laughter. When I left, it all went back to the way it was before I got there, and Mom died in her sleep, in her bed. It was peaceful. That is good.
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BK Books replied:
Hi Lee, Most of us LOVE our ice cream. This is the food I can say is eaten by so many as end of life approaches.—-toast not so much. I can see why toast would be a favorite in that it is easy to eat and a small portion. Good for you for bringing a bit of joy into your mom’s final days by sharing toast with her. Sharing is the important word here. You two had something special together. Blessings to you and your sister. Barbara

Mark

My wife’s mind was clear, and I tried to let her make her own decisions. She went from solid food to protein shakes. At some point she decided she didn’t want anything to eat. While respecting her wishes, I also knew that this might cause her to die sooner, and that was hard.
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BK Books replied:
Mark, you did good by letting your wife choose what and how much she would eat. I’m not sure she would have lived longer either way, but I do know she had your respect in supporting her decisions. You gave her a beautiful gift. Blessings! Barbara

Diane Hullet

I am so touched by this blog, Barbara, because, as you say, you “knew better” than to push food — yet still found yourself doing so. And your awareness of how that made things more tense is what really stands out to me. Seems like the challenge is to face mortality (our own and others) so that we realize it is bearing down upon us, and therefore deepen into that ‘precious time’ rather than struggle, thinking we are at a different phase. So tough to do, yet so necessary. And food seems to be at the heart of it. Thank you for sharing your real experience with Jack.
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BK Books replied:
Hi Diane, good to hear from you, my friend. I think by sharing my personal experience and thoughts others can see themselves and know what they are experiencing is oh so normal. Blessings to you Diane, in the good work you’re doing. Barbara

Deborah

Dear Barbara, I know you addressed this topic long before Jack died. But now, your intimately honest sharing and the revelation of what was really going on is a poignant and persuasive lesson. I look forward to reading the new, important booklet. This is such an important topic; thankyou!
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BK Books replied:
Hi Deborah, Thanks for your comments. Let me know what you think about *Always Offer, Never Force. *Blessings Barbara

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