Facing the Food Issue
One of the most challenging and most often debated end of life decisions families and patients deal with.
“He Just won’t eat anymore – I can’t stand by and just do nothing…”
“She’s not eating anything. When will you start IV?”
“Will you feed her with a tube since she is not eating anymore?”
“Why is he fighting his tube feelings – Can’t you restrain him and make him eat?”
Comments like these are common ones that are overheard by the Hospice staff as they make rounds, listening to families of patients struggling to cope with just one of many issues they are facing. How difficult and painful it must be for the wife to watch as her once 250 pound husband who loved her cooking now becomes thinner and thinner while announcing that he cannot stand to eat even one bite of what was one once his most favorite food. How helpless she must feel and how frightened too. In our culture – as in many cultures – we use food to show that we care for each other – to nurture each other – to comfort each other.
Mealtime is a time of socialization and recreation. It is often a family time and a time of sharing. With such a strong meaning associated with food, it is understandable that treatment decisions related to nourishment and hydration (taking or not taking of fluids) are frequently very difficult for families and society in general. We tend to believe that not eating or drinking will cause pain and suffering. Our impulse is to push the patient to eat and drink when they are no longer able to do so and to consider IV fluid or tube feedings as the next progression to maintain health for the patient when they seem to have given up caring for themselves by eating. This is also the time when most patients and families decide which medications to give up and which to continue – It has long been believe by Hospice care givers that medication which gives comfort should be continued if the patient desires it but that which serves only to extend an already compromised life may cause more harm and discomfort than good. For example, a patient with pneumonia taking antibiotics is generally only postponing the inevitable. This pneumonia is not a temporary infection in most cases but caused by the lungs repeatedly filling with fluid, often due to forced feedings which are aspirated into the airway.
Since Hospice care is about choices, we often help families see that when their loved one is no longer wanting to eat or drink it is usually the right choice for him or her at that time because they no longer are able to process the food metabolically anyway. We explain the truth about the fact that while food and water contribute to a patient’s sense of well being they may also – in the early states of terminal illness – be a cause of considerable discomfort in later stages.
Inability to digest food and food substitutes during later stages of terminal illness can cause diarrhea, nausea, vomiting, constipation or impaction resulting in increased pain and discomfort for the patient. The inability to absorb fluid can cause lung congestion leading to abdominal bloating, fluid stasis in the hands and lower limbs, ultimately it leads to confusion, shortness of breath, nausea and vomiting and urinary retention causing edema. (swelling). Sometimes more drastic occurrences are the development of bed sores because of the pooling of bodily fluids no longer normally eliminated from the body’s metabolic, digestive and lymph systems.
Nurses help families to understand that ice chips, frequent mouth care, ointments for lips, hard candies when appropriate, small sips of fluid and lots of love and caring can be more appropriate at the end of life than forcing food and fluids. Patients who are allowed to choose whether to eat and drink or not during the end of their lives are not only spared the physical discomfort of forced feeding but can also be spared the emotional struggles with their families who may have the best intentions but who are actually causing physical and emotional strife for their loved ones.
Time that may have been spent arguing about food can be used for more pleasant exchanges with each other. Instead of the patient feeling guilty for not eating and/or the loved one feeling guilty for not feeding the patient, they can talk about happy memories, , about ways they would like to have their loved one help them, perhaps discuss what they want to do with beloved possessions or how to make every day count now. There is no reason for guilt. A person at the end state of life making a decision to stop eating or drinking is following his or her heart – their mind body and soul connections are strong when facing the end of their life and it cannot be stressed often enough that oftentimes the body simply is no longer capable of processing or metabolizing food and medication and so it shuts down the “hunger messages” to the brain. The patient is not hungry – not starving to death, but rather in a quite natural state of letting go of the physical and holding more strongly to the spiritual.
Remember they are not dying because they are not eating or taking medicines but rather they are not eating or taking medicines because they are dying.