It is common for people to experience a decreased appetite and reduced food and fluid intake as they approach the end of life. This is a normal part of the dying process and is often distressing for the individual, their family and caregivers. Understanding why appetite declines can help everyone involved navigate this difficult transition with more ease and comfort.
Why does appetite decrease at end of life?
There are several reasons why people tend to stop eating and drinking in the final weeks and days of life:
Physical changes
The body goes through various physical changes as it begins shutting down that contribute to decreased appetite:
- Digestive slow down – The digestive system starts to slow and shut down, making it harder to process solid foods.
- Metabolic changes – The metabolism changes so the body needs less nutrition.
- Decreased hunger signals – Hormones and neuropeptides that regulate hunger decrease.
- Sense of taste – Taste buds become less sensitive, often making food seem bland.
- Sense of smell – Odors may become unpleasant, decreasing appetite.
- Mouth and throat issues – Problems like thrush, mouth sores and thick mucus can make eating uncomfortable.
- Nausea and vomiting – Gastrointestinal issues can develop, making eating unappealing.
- Early satiety – People feel full after eating just a small amount.
- Fatigue – Severe tiredness makes eating feel like too much work.
- Shortness of breath – Breathing issues can make eating difficult.
As the body declines, people naturally turn inward and start to decrease food intake. Eating requires energy that the dying body no longer has. The physical act of eating and drinking becomes exhausting.
Psychological changes
In addition to the physical factors, there are psychological reasons why appetite diminishes as death approaches:
- Loss of interest – As the body shuts down, people lose interest in normal activities like eating.
- Concentration difficulties – It becomes harder to pay attention to eating due to confusion or drowsiness.
- Emotional distress – Anxiety, depression and grief over dying can suppress appetite.
- Wanting to hasten death – Some may stop eating and drinking to speed the dying process.
- Disconnection from food – People start to move away from worldly pleasures and no longer find joy in food.
The dying process creates significant psychological changes that make eating unappealing. Food and drink are often one of the first things people lose interest in.
Social factors
Social circumstances can also contribute to diminished appetite at end of life:
- Isolation – Being alone frequently or lack of help eating can lead to poor intake.
- Difficulty shopping/cooking – If a person is no longer able to shop and cook for themselves, they may eat less.
- Financial limitations – Lack of money can restrict someone’s food access near the end of life.
- Caregiving approach – Caregivers may intentionally restrict intake if they feel it will prolong dying.
- Environment – Being in an unfamiliar place like a hospital or facility can suppress appetite.
If someone lacks adequate social support or lives in an environment that does not promote eating, they are more likely to start decreasing food intake as their health declines.
What are the consequences of reduced eating?
While appetite loss is normal, there can be consequences when someone starts eating and drinking much less:
Dehydration
Dehydration occurs when the body does not take in enough fluids to replace what is being lost. Since dehydration increases confusion and anxiety, it can actually exacerbate appetite loss near the end of life. Signs of dehydration include:
- Increased thirst
- Dry mouth and lips
- Fatigue
- Dizziness
- Dark urine
- Confusion
Maintaining proper hydration by providing sips or ice chips of water can help minimize some of the difficult symptoms that might otherwise develop.
Malnutrition
If calorie and nutrient intake becomes too low, the body can become malnourished. This leads to muscle wasting, tissue breakdown, and immune system impairment. Signs of malnutrition include:
- Weight loss
- Muscle loss
- Fragile skin
- Hair loss
- Fatigue
- Frequent infections
Providing small, nutrient-dense snacks and high-calorie supplements can help counter malnutrition near end of life.
Aspiration pneumonia
Difficulty swallowing is common near end of life. When food or liquids “go down the wrong pipe” into the airway, it can lead to aspiration pneumonia. This infection causes coughing, fever, and shortness of breath. Signs include:
- Cough and choking during meals
- Wet/gurgly voice
- Fever
- Chest pain
- Shortness of breath
Aspiration is a serious concern for those struggling to eat and drink near death. Precautions like proper positioning can help prevent it.
Increased fatigue
As the body weakens, eating requires more effort and energy expenditure. Continuing to eat normal amounts can accelerate fatigue as death nears.
Prolonged dying process
In some cases, continuing to eat and drink can lengthen the dying process. As the body starts shutting down, providing artificial nutrition does not improve quality of life.
How much should someone eat at end of life?
It can be difficult for families to know how best to respond when a loved one stops eating. Some key considerations:
- Do not force food or fluids – This can create conflict and discomfort. Respect the dying person’s wishes.
- Offer small amounts – Small nutritious snacks may be better tolerated than large meals.
- Make foods appealing – Enhance taste and smell through spices, marinades, etc.
- Opt for comfort – If swallowing is difficult, don’t force the issue.
- Consider supplemental nutrition – Drinks like Boost can provide extra calories and nutrients.
The most appropriate intake is what provides comfort. This amount varies greatly depending on the individual situation.
General guidelines based on prognosis:
| Prognosis | Recommendations |
|---|---|
| Days to weeks | Sips of fluid and mouth care for comfort. Small snacks if desired for energy. |
| Weeks to months | Liquid nutrition if able to swallow safely. Add nutrient-dense snacks as tolerated. |
| Months to year+ | Soft healthy meals and high-calorie foods to maintain weight and nutrition as able. |
The key is to be flexible and adapt eating recommendations based on changing needs and abilities.
What are some tips for encouraging eating?
If someone is still willing and able to eat with a reasonable prognosis, there are ways caregivers can make mealtimes more successful:
- Make the environment pleasant – Play soft music, use flowers, chat, etc.
- Help the person sit up to eat if possible
- Offer smaller portions spaced throughout the day
- Cut food into small, easy to chew pieces
- Use cups with lids and straws if helpful for drinking
- Focus on the person’s food preferences
- Supplement with nutritious drinks if meals are too difficult
- Use butter, gravy, sauces to increase taste and calories
With creativity and compassion, food intake can often be maintained for a longer period to support energy and hydration.
When should eating and drinking be discontinued?
There comes a point for many when continuing to eat and drink is both unhelpful and uncomfortable. This is often appropriate when:
- The person expresses a desire to stop or refuses food/drink when offered
- There are signs food/drink may be going into the lungs
- More energy is expended eating than is gained from the nutrients
- Weight is steadily dropping and not stabilizing with interventions
- The dying process is being prolonged without quality of life
At this stage, the focus shifts entirely to comfort care and relief of distressing symptoms.
What comfort measures can be provided?
When the decision is made to stop all artificial nutrition and hydration, the priority becomes keeping the person as comfortable as possible:
- Ice chips can soothe a dry mouth
- Glycerin swabs can moisten lips and mouth
- Medications treat symptoms like pain, nausea and anxiety
- Turning, positioning and mouth care prevent complications
- Chapstick and lip balm prevent cracking
- Cool moist cloths to forehead feel soothing
- Removing dentures if they become uncomfortable
- Offering sips or spoons of water if requested
The care team can provide supportive interventions to ease distress at end of life even without eating and drinking.
What are the expected changes when intake stops?
Families and professional caregivers are often deeply concerned about removing artificial hydration and nutrition. Knowing what to expect can ease some worries:
- Decreased thirst – The dying person will likely not experience distressing thirst once intake stops.
- Dry mouth – Keep lips and mouth moistened to minimize discomfort.
- Decreased urine output – Urine will become more concentrated and output will drop.
- Changes in consciousness – Confusion may increase, but coma is uncommon.
- Restlessness – Some terminal restlessness may occur but is usually manageable.
With proper communication and symptom management, dehydration during the dying process does not need to be traumatic.
What are ethical considerations?
Many complex ethical questions surround decisions about eating and drinking at end of life:
- Patient autonomy – Food refusal should be respected regardless of prognosis.
- Intent and motive – Consider whether intake is being restricted intentionally to hasten death.
- Balancing burdens – Weigh benefits of intake against comfort and prolonging dying.
- Quality vs quantity of life – Prioritize comfort and quality when curative treatments are no longer desired.
- Emotional obstacles – Family emotions may interfere with limiting nutrition.
- Legal concerns – Be aware of laws regarding assisted nutrition and suicide.
Open communication centered on the patient’s wishes helps navigate these sensitive considerations.
How can families cope with changes in eating?
It is very difficult for families to see food refusal and dehydration in their loved one near the end of life. Some tips for coping:
- Be patient – Allow the dying person to control intake without pressure.
- Focus on comfort over food – Offer sips or ice chips if desired without expectation.
- Keep the mouth moist – Use lip balm and glycerin swabs to minimize dryness.
- Consider supplements – Drinks like Ensure provide nutrients without large volume.
- Focus on quality time together – Spend time talking, listening to music, holding hands, etc.
- Communicate openly – Discuss the changes so everyone understands what to expect.
- Review benefits vs burdens – Weigh pros and cons of forcing food or fluids.
- Be compassionate – Show love through gentle care rather than pressuring to eat.
With empathy and clear communication, families can provide meaningful support through the changes in eating that precede death.
Conclusion
Diminished appetite and reduced oral intake are common and expected as part of the normal dying process. While families may find this distressing, understanding the reasons why it occurs and how to provide comfort even without eating can ease some worries. With proper education and communication, appropriate end-of-life nutritional care focused on quality of life and patient wishes is possible for all involved.
