Nutrition & Hydration Care at the End of Life
When I was in junior high school, my grandfather was dying in his small apartment. I would sit in the next room watching television and listening. “Just one more bite, Dad,” I heard my mom plead over and over. “Please Dad, just one more little bite.” It is now thirty-five years later and I am a hospice physician. I can still recall the distress in my mom’s and my grandmother’s voices as they desperately tried to coax grandpa to eat.
Eating is a natural part of life. Food plays a role in giving us energy and keeping us healthy. However, when a body is preparing to die, it is natural that eating should stop. This situation is a difficult concept for many caregivers and loved ones to accept. This CareMatters is written with the intent to equip you, a healthcare professional, with enough knowledge and understanding so you can help your dying patients and their families with the issues of nutrition and hydration at the end of life. We will be answering the ten most common questions that we hear from our patients and their families. The goal is to give you the answers and wording so you can answer them in your own voice. We even have a companion handout on this topic — specifically written and designed for patients and families — that will help reinforce your message.
Is my loved one starving?
Healthy people feel hunger pains and thirst when they do not eat and drink, but people who are very sick do not feel these sensations. Dehydration may actually bring relief from some problems. For example, vomiting may stop and pain from tumors may lessen. Coughing, congestion, and mucus in the lungs may also decrease. The medical evidence is quite clear that dehydration in the last phase of a terminal illness is a very natural and compassionate way to die. The only uncomfortable symptoms of dehydration are a dry mouth, which can be alleviated with good mouth care, ice chips, and sips of water.
When the appetite slows down what can I do to increase intake?
Here are some suggestions:
- Do not force your loved one to eat or constantly remind them of their decreased intake. A soft gentle approach may help the most, and, remember, it is their choice.
- Make mealtime a quiet and pleasant time — candles, flowers, and soft music may help.
- Appetite tends to decrease as the day goes on; make the most of breakfast.
- Offer favorite foods in small amounts.
- Try offering small amounts of nutritional supplements such as Ensure or Boost.
- Have drinks available and consider giving liquids in other forms such as jellos, puddings, Italian ices, and ice cream.
- Allow the patient to rest after meals.
Remember to emphasize to caregivers that feeding their loved one may cause discomfort or increased anxiety. There comes a time when it is okay for a patient to not eat or drink — help the caregiver to support the patient’s decision.
When someone is not eating or drinking, is that painful?
Healthy people feel hunger pains and thirst when they do not eat and drink, but people who are very ill do not feel these sensations. Dehydration may actually bring relief from some problems. For example, vomiting may stop and pain from tumors may lessen. Coughing, congestion, and mucus in the lungs may also decrease. The medical evidence is quite clear that dehydration in the last phase of a terminal illness is a very natural and compassionate way to die. The only uncomfortable symptoms of dehydration are a dry mouth, which can be alleviated with good mouth care.
The symptoms and signs of a dry mouth and the actual processes for doing good mouth care and relieving a dry mouth will be discussed in detail in the next three questions.
I remember how my grandfather first stopped eating meats and began, for the first time in his life, to prefer fruits and vegetables. Then he began to ask for only soft foods. Finally, only liquids and ice cream were preferred. And then he simply said, “I just don’t feel like eating.” This is a common progression for patients in the dying process. I would stress how important it is for the healthcare professional to bring up this issue even if the family doesn’t. Explaining this natural progression is a crucial part of acceptance for many families.
What are the symptoms and signs of a dry mouth?
- Dry, flaky, whitish colored saliva in the mouth
- Thick saliva or mucus that stays attached to the lips like strings
- Dry, cracked or chapped lips
- Difficulty swallowing
What can I do about a dry mouth?
There are many ways to help relieve the symptoms of a dry mouth. Here are some suggestions:
- Drink small amounts of fluids at the same time as eating foods.
- Eat cold, soft, bland foods, such as Popsicles, shaved or crushed ice, frozen juices, and ice cream, if able.
- If swallowing is difficult, place ice chips or frozen juices in a washcloth and suck on the washcloth.
- Consider avoiding alcohol, tobacco, spicy foods, citrus juices, and rough foods – such as hard bread, toast, crackers, potato chips, and pretzels.
- Suck on sugarless gum or hard candy.
- Rinse mouth frequently with water.
- Do not lick lips; it can worsen lip chapping and dryness.
- Apply KY jelly or lip balm to lips every two hours.
What can I do to keep my loved one’s mouth moist and clean?
Keeping the mouth moist and clean is important for comfort when your loved one cannot eat and drink. The membranes of the mouth and the lips are very sensitive. Good mouth care can do more than just help a dry mouth – it can help prevent bad breath, infections, irritation, and may help increase appetite. Here is a simple step-by-step method:
Gather the following supplies:
- Soft toothbrush or foam swab
- Non-abrasive toothpaste
- Small bowl or emesis basin
- Wash cloth
- Glass of water or alcohol-free mouth wash or mouth solution
- Raise the head of the bed. Do not do mouth care while your loved one is lying down, which could cause choking. There are special techniques for a patient who is lying down. Ask your AseraCare Hospice professional for help as this is best taught at the bedside.
- Ask your loved one to take a sip of water to moisten the mouth if they are able.
- Use a soft toothbrush or foam swab and gentle, non-abrasive toothpaste to gently brush the teeth, gums, and tongue.
- Do not put the toothbrush too far in the back of the mouth; this can cause gagging.
- If the teeth cannot be brushed, use a mouth rinse. Avoid mouth rinses with alcohol; these can increase soreness and cause dryness. You may want to consider using a solution of 1/2 teaspoon of baking soda and 1/4 teaspoon of salt in a glass of warm water to rinse the mouth.
- Ask the patient to rinse well and spit in the bowl or basin. Do not swallow the toothpaste or rinse solution.
- Apply lubricants, such as KY jelly, to lips every 2 hours if needed.
What if my loved one wants to eat or drink? What should I do?
Some people are not able to swallow correctly due to illness. In this situation it is important to know that eating or drinking could cause food or fluid to fall into the lungs and this can cause pneumonia or problems breathing. However, if your loved one is alert and wants to eat or drink, the pleasure of eating and drinking may override these concerns. Discuss the situation with your physician and your AseraCare healthcare professional. Tiny amounts of ice cream, ice chips, yogurt, Italian ices, and applesauce can usually be safely given — even to the sickest patient.
When should artificial nutrition or hydration be started?
Each person’s situation is unique. If a person isn’t able to swallow because of a temporary medical problem, artificial nutrition (feeding tubes or intravenous nutrition) can be given until they recover. However, as the body weakens or their disease gets worse, feeding tubes and intravenous fluids can be burdensome and increase the risk for infection and pain – in other words, they may do more harm than good. Feeding tubes may feel uncomfortable and they can become plugged – causing pain and nausea. Fluids can cause bloating, diarrhea, and aspiration. Sometimes, patients may need to be physically restrained or sedated to keep them from pulling out the feeding tube or intravenous line. For each person, the benefits of artificial hydration and nutrition need to be compared to the risks. Your physician and AseraCare Hospice professional can help you make this decision.
It is important that discussions with the patient, their family, and their physician be made and documented before the patient starts having problems swallowing. Keep in mind that regardless of the treatment choice regarding feeding tubes, families need support from their health care professionals. Families will have to live with their decision and this can be a difficult burden for some to carry.
I remember a patient I had who loved the taste of beer but was unable to swallow liquids anymore. The hospice team helped his wife to make slushy ices from frozen beer!
Who should make the decision about a feeding tube or IV fluids?
Ideally, an alert, well informed, and understanding patient makes all health care decisions. Therefore, if your loved one can understand the issues and has voiced a decision, unless the specific situation is very unusual, the physician and family should follow the patient’s wishes. If the patient is not alert or confused, then hopefully they have stated their wishes in an advanced directive or have designated a health care proxy. By the way, the designated health care proxy should not feel under a heavy burden when making these decisions; their mandate is simply to do what they think their loved one would want done if they were alert, well-informed, and understanding of the current situation. If there is no advanced directive and no health care proxy, then one needs to know the laws of each state to best understand the next step.
This is probably a good time for me to emphasize to all health care professionals that you encourage your patients to fill out advanced directives and appoint a health care proxy.
What happens when my loved one cannot eat or drink?
People who don’t receive food or fluids because of illness will eventually fall into a deep sleep and usually die in one to three weeks. This is the common last phase path for most dying people – whether the fatal disease is cancer or some other disease. The medical evidence is quite clear that this is a very natural and compassionate way to die.
Back to my grandfather: As you now understand, the problem was not that my grandfather was not eating or drinking. His not eating and drinking was simply a signpost that he was in the last phase — the dying phase – of his life. As this became clear to my mother and grandmother, they thankfully stopped coaxing him to eat or drink and instead began preparing practically, emotionally, and spiritually for his death. Ice chips, lemon Italian ices, and vanilla ice cream were his total intake for the last three weeks of his life. Visits from friends and families, bedside prayers for peace and comfort, and reflections about his life became commonplace occurrences in that little apartment.