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Understanding Decreased Appetite and Thirst

The goal of A Plus Hospice Care is to ensure that the persons whom we care for are as comfortable and as pain free as possible. One of the issues in providing hospice care is what to do when the person for whom we are caring for refuses to eat or drink fluids, either orally or through a feeding tube.


Concern: I thought that providing food and fluids were the basics of good care.
One of the most basic of instincts is to provide nourishment for ourselves and the ones we love and care for. We are able to build up strength and sustain life either by eating and drinking, or when appropriate through intravenous administration of fluids or through tube feedings. Yet in many cases, when caring for someone with a limited life expectancy, nutrition and hydration many not only extend the dying process, but also be a cause of pain and discomfort.

Concern: Why would not giving food and fluids be a benefit for someone in the final stages of a terminal illness?
There are various theories that explain why not providing food and fluids may be of benefit for most people in the final stages of a terminal illness. In advanced stages of dehydration the body normally releases a substance that causes pain relief. Other theories suggest that there are ketones (normal substances produced by the body) that have a numbing effect in the final stages of illness. The usual symptoms of dehydration are absent in most people who are receiving hospice care and are no longer able to take in food and fluids.

Concern: Why would someone want to stop eating and drinking? Won’t they starve?
Most people receiving hospice care reach a point in the disease process when all body systems slow down. As death approaches, they will frequently become more sleepy and will stop eating and drinking because it takes more energy than they have. Dehydration occurs naturally when less food and drink are taken in than are lost through digestion and kidney output. The decrease in fluids leads to a build up of chemicals called ketones, which will dull awareness and become a naturally produced pain reliever.

If the person receiving hospice care is given IV fluids or tube feedings during this time, it may be necessary to insert a tube into the bladder to drain off urine. The additional fluids may also cause the heart to become overworked, may cause more lung secretions, causing a cough, and the lungs may swell with fluids and give the patient the feeling of drowning. Any food that is eaten takes longer to pass through the digestive tract (because it is slowed down) and may cause nausea and vomiting. Taking in food and fluids at this time may actually be a source of pain and discomfort.

Concern: If a person receiving hospice care stops eating and drinking, shouldn’t a feeding tube be inserted to provide the person with nutrition and hydration?
Providing nutrition and hydration through a feeding tube is like any other medical procedure and the person being cared for has the right to accept or refuse it, after being informed of and weighing the benefits and burdens of the treatment. If their opinion (or the opinion of the person appointed to make care decisions for them) determines that consequences of providing nutrition and hydration outweigh the benefits, then treatment can be refused and the dying process can be allowed to take the natural course. The person receiving care is always the decision maker in any care they receive.

Concern: Is there a difference between feeding someone orally and providing feeding through a tube?
Feeding someone by mouth is very different than taking feedings through a tube. Eating and drinking require the active participation of a person while a feeding tube is a medical intervention. If a person refuses to eat, they should not be forced. This would violate their dignity and their right to self-determination. We can continue to offer and even encourage food and fluids, but we should not force feed anyone. Some of the people that we care for may only want small amounts of food and water at any given time, others may require being fed slowly by hand and reminded to chew and swallow their food.

Concern: What sort of changes can caregivers expect to occur when the person they are caring for no longer wishes to eat or drink?
At this point the person receiving hospice services will frequently sleep more and be less alert. Mental changes including some confusion are often noticed. Bowel movements will occur less frequently and urine output is noticeably decreased and concentrated. Dry mouth or thrush may occur.

Concern: What can caregivers do to ensure that the person they are caring for is comfortable?
Keep the mouth refreshed with frequent mouth care including moist mouth swabs and non-alcoholic mouth rinse. Some people enjoy ice chips or very small amounts of water to keep the throat from feeling too dry. Frequent applications of lip balm or petroleum jelly to the lips will prevent chapping or cracking.