End of Life Nutrition
Palliative feeding can be challenging.
When my mom was very ill from cirrhosis of the liver, she required assistance with eating.
Due to her confusion, sleepiness, lack of coordination and shaky hands, it was important to have someone with her at mealtimes to help out. At this late stage, mom was too ill to receive nutritional benefit from the food, but eating was still a pleasurable activity, and helped us family members feel that we were doing something to help.
It is a natural instinct to want to feed someone you love, even when you know intellectually that the person’s body is too ill to make use of the nutrients. The doctor explained that in the presence of serious advanced illness such as hers, the body obtains energy by breaking down its own muscle and fat, rather than by processing the food.
Being a liver patient with fluid accumulation who was pre-diabetic, she had been on a low salt, low sugar diet with limited fluids for many months. Now, in Palliative Care, all of Mom’s previous dietary restrictions were lifted. The decision to no longer continue curative or life-prolonging therapies meant here was no further benefit in limiting her food choices or fluid intake, and it had become important to allow her to enjoy eating and drinking again.
Fortunately, Mom still had a good appetite, and really enjoyed thinking about, requesting, and eating foods that she had not had in a very long time. And let me tell you, she was not asking for vegetables! She ate sushi, taco chips, donuts, pizza, fast food hamburgers, candy, butter tarts and drank mango juice. Providing her with these treats and helping her to enjoy them was a bright spot for all of us. Although bittersweet, this was an activity which lightened the atmosphere quite a bit.
Mealtimes presented some challenges, though. Mom’s reflexes were poor, and she would often suddenly lose alertness.
We had to make sure she remained fully awake (sometimes she looked like she was, but was “somewhere else”). It was explained to us that there was a high risk of asphyxiation if she did not swallow properly, and that would be a very serious situation.
These are some things to keep in mind with palliative feeding:
- Ensure the person is sitting comfortably and upright to make swallowing comfortable.
- Provide finger foods when eating with cutlery has become difficult.
- Use a spoon whenever practical as opposed to a fork.
- Offer small amounts of food, placed at the front of the mouth, allowing the person time to swallow before offering another bite.
If your loved one is experiencing a complete lack of appetite, on the other hand, it is important to remember that people with advanced illnesses can be comfortable with little or no food intake for weeks or months. That is because people who are seriously ill often do not experience hunger or thirst in the way that healthy people do. Forcing someone to eat in these situations can make them feel nauseated and may contribute to feelings of distress.
Family and friends often find a person’s complete lack of appetite and weight loss worrisome. It is a natural instinct to encourage the person to eat and drink more, thinking that the person will feel stronger and live longer, but if your doctor has told you that this is not the case, you must come to terms with this. This is the time to let the patient make the decisions about what to eat, when to eat or whether to eat or drink at all.
If you are feeding someone who doesn’t have much appetite, here are some tips to consider:
- Prepare several small meals during the day, as opposed to three larger ones.
- Avoid spicy foods if the person can no longer tolerate them.
- Avoid cooking odors if they are troublesome.
- Do not be surprised if the person craves certain foods some days, and has no interest in them on others.
- Try not to get frustrated if the person asks for a certain food and then loses interest by the time the food arrives.
- Let the person decide how much, what, and when they will eat.
- Recognize that individuals with serious illnesses often become full quickly, sometimes after just a few bites of food.
- Try not to push the person to eat more, as a feeling of fullness, nausea or vomiting may result.
- Try not to make mealtimes a time of tension about eating and food. Rather, focus on sharing time together.
- Remember that a rejection of food is not a rejection of you.
- Unless a health provider asks for updates on weight, do not routinely keep track of weight.
We often brought meal replacement drinks for my mom in the hospital and hospice for when she wasn’t eating much. Of course, it did not change the trajectory of her disease, but she enjoyed them (and we felt good about it).
(left) Boost Very High Calorie Nutritional Energy Drink
Some other items that made things easier for all of us:
Maddadapt II Built-Up Cutlery For people with upper extremity weakness or reduced range of motion. These stainless steel utensils feature built-up handles for people with arthritis, weak grasps or other hand limitations. Their contoured shape makes them easier to hold and use.
Spillproof Kennedy Cup with Lid – lightweight spill-proof drinking cup that is used with a straw. The patented design allows the cup to be easily filled with up to 7 ounces of warm or cold liquid. Once the lid is screwed on the liquid will not spill out even if the cup is turned completely upside down. This means an end to messy spills and new independence to those who have difficulty using conventional cups.
Metal Pill Crusher – Easily crush hard-to-swallow pills into powder that can be mixed into food or drinks with this heavy-duty die-cast crusher. The chrome-plated zinc with aluminum and stainless steel fillings is corrosion resistant and built to last.
Terry Crumb Catcher Bib
Pivot Tilt-top Overbed Table (U-Base) – this unique table top tilts with the angle of the mast to provide a flat surface regardless of the angle of the mast. It also closes flat for easy under-bed storage. The U-shape base (sometimes referred to as C-Base) overbed table not only provides a convenient table for bed-bound seniors, but also accommodates most room seating by leaving room for your feet while seated in a chair or wheelchair.
In summary, remember that nutrition is almost always compromised in the final phase of progressive terminal illness, and that providing calories cannot change that because the body is not able to use them for energy or to build muscle, fat and so on.
It is a natural instinct to encourage the person to eat and drink more, thinking that the person will feel stronger and live longer, but this is simply not the case. From personal experience, I can tell you that this can be a very difficult concept for loved ones to internalize.
Even if high-calorie supplements are provided, they won’t make a difference. As I learned from the hospice care team, the recommended approach to feeding at the end of life is to “feed for comfort.” Simply provide small amounts of favorite foods as requested by the patient.
A surprisingly warm and informative resource on hospice and other end-of-life care options. Individuals approaching the end of life, and their loved ones, face many challenges–but as hospice nurse Karen Whitley Bell reassures us, this difficult time also offers an opportunity to explore and rediscover a richer meaning in life.
Drawing on her years of experience, Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life. For people in hospice care, as well as their friends and families, this is an indispensable reference, a trustworthy source of comfort and spiritual healing.
Do you have any thoughts or experience with end of life or palliative feeding? Please share them in the comments section below.
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Introduction to Palliative and Hospice Care
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The Caregiver’s Guide to ALS
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