Eating and Drinking at End-of-Life
Hospice patients should eat foods that bring them joy … at any time of day.
When my mom was sick with lung cancer, my dad spent so much of his time preparing food in the hopes that she would gain weight. Her appetite had significantly waned since getting sick, and she was down to 90 pounds. We knew things were bad when she refused her five o’clock martini. One day after my dad brought her a large plate of scrambled eggs, bacon, and toast, my mom wrote me a note that said, “Please tell your dad to stop feeding me. I am not hungry.” I didn't have the heart to tell him; his number one goal was to help her live longer. He never stopped trying to feed her. Even when she could barely swallow, he was offering her steak and potatoes.
Like my dad, many people express their love through food. We instinctively want our loved ones to nourish themselves. However, a waning appetite is a normal and expected function of dying. Understanding this may allow you to let your loved one’s body do what it needs to do and allow you to shift your energy towards other nurturing possibilities.
Most hospice patients are given a prognosis of six months or less, and as their body is declining, their appetite, nutritional needs, and their ability to swallow will decline significantly over weeks or months. Your loved one is expending less energy overall and has less caloric needs as a result. Because their body is in the process of dying, it cannot process food and fluids normally anymore. A diminished appetite is a natural result. Here are recommendations and considerations for caring for your loved one if they lose their appetite near the end of life.
My lovely mom at 90 pounds.
Medications
If you are concerned about your loved one’s weight loss, the hospice physician can prescribe medications to help stimulate their appetite such as dexamethasone or Megace. I also know many patients who have used medical marijuana with this same effect. Hospice doctors cannot prescribe medical marijuana for you, but they may be able to direct you to a resource.
Outsource your meals
It’s hard to prepare food even when life is normal, but when you are the main caregiver, sometimes breakfast, lunch, and dinner can feel downright overwhelming. Groceries and meals are a great thing to outsource as friends often want to help but don't know how. Ask your friends, family members, or religious organizations to help with meals and grocery store runs.
When my mom was dying, friends from church brought over dinners; my mom rarely ate these meals, but my dad, siblings, and I appreciated the mental and physical break from cooking. If you are concerned that your friends will drop anchor when they drop off the casserole, place a cooler outside with a sign that says, “Hard day today, thank you for your support. Please place meal here.”
Switch to smaller, more frequent meals
Your loved one will go from wanting three large meals a day with snacks to preferring smaller, more frequent meals. After a while these five to six meals might become simpler such as a cup of yogurt or soup. Over time, they may not even care about or request meals. At this stage, it’s important to offer them bites of food and sips of their favorite beverage frequently throughout the day and physically assist them with eating if needed.
Let them eat whatever they want, whenever they want.
Let them eat cake
I usually recommend that hospice patients eat whatever the heck they want, whenever they want. Unless it is against hospice doctor’s orders (and their orders are often quite different from the cardiologist or renal team’s orders), your loved one should eat foods that bring them joy; if they want cake at 6 a.m., they should get a delicious slice of strawberry cake at 6 a.m.
Nutritious food suggestions
If you are aiming for healthy nutritious foods, I suggest having foods that are prepped, satisfying, and easy to eat like freshly sliced watermelon, bananas, peaches, applesauce, popsicles, full-fat yogurt, ice cream, sorbet, soups, and avocado slices. Consider easy-to-chew and digest proteins like lentils, fish, tofu, roasted chicken, or eggs and whole grains like oatmeal, brown rice, or quinoa. Any type of potato — yams, russets, purple potatoes — cooked or mashed is also rich and satisfying. Add butter to increase caloric intake (and joy). Fermented foods like kefir or miso can aid in digestion. Cooked vegetables (roasted, steamed, or sautéed in olive oil) can pack in some nutrition while generally being easy to swallow. Nutritional drinks or shakes may also assist you in boosting your caloric and protein intake.
Mealtime rituals
Meals may take on a new significance because when you are sick, life can feel monotonous and downright boring. Food can make your loved one’s day much more enjoyable. Establish mealtime rituals if you think that will be helpful. I had a patient whose wife would get him out of bed and into a chair at 8 a.m., 1 p.m., and 6 p.m. every day. On luxurious days she would make his favorite meatloaf. He would relish in the taste and smell as he slowly made his way through this enormous pile of beef. Even as his appetite decreased, she continued to get him out of bed and lovingly prepared his favorite foods. She would put the smaller portions onto an elegant piece of china because he was raised in the generation of the clean plate club and felt shameful wasting food. Eventually, his “meals” were simply three slices of fresh peaches or a scoop of ice cream next to a single rose.
My final food requests: A to Z Pinot Gris and a double chocolate chip cookie.
Forcing food
We do not recommend forcing your loved one to eat or drink. Again the process of dying is a natural bodily function. A decreased appetite is the body’s natural way of eliminating unnecessary work. To force food or fluids when a patient is not hungry or thirsty can cause some harmful consequences such as aspiration pneumonia, swelling in the legs, or unnecessarily increasing the need to urinate which is annoying when you are bedbound.
It is, however, important to offer food and assist them with eating. When my mom was bed bound, she still loved her ice cream but would never request it. I would offer her her favorite vanilla ice cream throughout the day, and she savored two small bites. “Oh, that is so delicious.” She still had the energy to suck through a straw, and I would hold her glass as she washed it down with a small sip of water.
Maximize the patient’s independence and sense of control
Your loved one may feel like everything in their life is spinning out of control — because so much of it is. Most of my patients hate to be dependent on others. As your loved one declines, it’s important to maximize their independence and sense of control; offer food choices when you can, or ask them when they want to eat. Anticipate their needs so they don’t have to ask. Provide them with napkins, a wet washcloth, a variety of accessible snacks, and extra water.
When eating becomes physically difficult
Food will eventually become difficult to swallow, certain foods or pills will get stuck as they are swallowing, or they will cough while eating. Again, this is normal, expected, and generally frustrating for the patient. At this point, they will need softer foods that slide down easily such as popsicles, slippery fresh fruit such as peaches, watermelon, honeydew, applesauce, yogurt, soups, ice cream, milkshakes, or Jell-O.
As eating becomes more difficult, how a patient is positioned in bed can increase the ease with which they swallow. It’s easier for patients to swallow if they are sitting upright in bed at 90 degrees and if they tuck their chin when they swallow; sometimes you have to cue them to do this. A hospital bed makes this quite easy as you can mechanically elevate the head of the bed, otherwise, you may have to prop them up using pillows. When these foods become difficult to swallow, you can try small ice chips or bits of popsicles that melt in their mouth.
Liquids will also become difficult to swallow. Some patients may need to thicken their liquids, though many patients don’t appreciate the texture of thick coffee. When it’s difficult to drink from a cup, use a straw. After some time, they will not have the strength to suck through a straw. At this time, you can use an oral syringe to gently place small bits of water in their mouth or you can offer ice chips or bits of popsicles. Your hospice team can provide you with oral syringes and instruction.
There will be a point that they will not eat or drink anything at all. It also may not be safe to eat or drink anything because they are coughing and choking too much. This transition is hard and a stark reminder that the patient may have only days to weeks left. In my experience, the average time that a patient can survive without food or fluids is about two weeks, though I have seen patients survive days and even over a month.
Artificial hydration
Many families often pose the question of artificial hydration when their loved one is not drinking anymore. This intervention involves hydrating a patient with IV fluids through a small tube inserted into their vein. Generally, IV fluids are not recommended for those on hospice. It does not prolong life nor does it quench thirst. Decreased thirst is a normal part of the dying process and a natural way for the body to eliminate unnecessary work. Excess fluids in the body as it is trying to shut down could potentially be more harmful than beneficial. Your loved one may develop uncomfortable edema, swelling in their legs, or fluid in the lungs causing shortness of breath. There are some cases in which it can be temporarily beneficial. If you have questions, ask your hospice team or provider.
Oral care is critical
Oral care is always important, even when they are not eating or drinking. Brush the patient’s teeth twice a day when you can because this helps to prevent sores and minimize dryness. When they cannot help with this process, clean their mouth throughout the day with an oral swab. The hospice nurse or home health aide can show you how to do this. If they cannot drink, you will want to moisten their mouth with an oral swab or oral syringe many times throughout the day and apply lip balm.
Refer to their Advanced Directives/POLST
If your loved one filled out a POLST or expressed their final wishes clearly, rest in this gift. I often have conversations with family members who agonize over their loved one’s inability to eat. I will remind them of their mom’s POLST or advanced directives that explicitly state they did not want tube feeding or artificial nutrition. You are honoring your loved one when you honor their wishes.
Your loved one is not dying from starvation
Remember your loved one has an underlying hospice diagnosis that is actually causing their death. Their diminished appetite is simply part of the natural dying process.
Voluntarily stopping eating and drinking (VSED)
Some patients choose to expedite their death by voluntarily stopping eating and drinking (VSED). This can raise some ethical concerns for family members or if they are in a nursing facility with a religious affiliation. If your loved one is considering this, share this with the hospice team. The team can provide emotional support or medical guidance if needed. The patient may need to sign a contract if they are in a facility to ensure that all parties know this was their decision and not caregiver negligence. Some facilities do not allow VSED.
Trust that the body knows what it’s doing…You can still nourish your loved one as they are dying. When they cannot eat much, offer small bites of yogurt as you read from a poetry book.
It is agonizing to watch your loved one pick at their meals and lose weight, and like my dad, many caregivers put so much energy into trying to feed their loved one at the end of their life. You can still nourish your loved one as they are dying. Give them control by offering food choices they love and maximize their independence by anticipating their needs. When they get too fatigued, bring them their favorite easy-to-eat foods and offer them bites. You can establish mealtime rituals that elevate the simple to the sacred by offering slices of fresh fruit on a beautiful plate or placing a rose next to the yogurt. You can drink milkshakes together — do not worry about your BMI at this time. When they cannot eat much, offer small bites of yogurt as you read from a poetry book or their favorite holy text. Trust that the body knows what it’s doing and put your energy into nourishing your loved one’s soul.
Blessings.
*Writer’s note: Except for my mom’s story, the subjects described in this post are not actual patients, but stories that include a combination of many patients and scenarios over the years.
