Nothing would be more tiresome than eating and drinking if God had not made them a pleasure as well as a necessity. ~Voltaire
Food and Love
From the very first days of our life food is associated with love and nourishment. Breast (or bottle) feeding is a way that relationship is created and strengthened between a mother and her baby. As we grow food is used as a treat, or as an expression of thanks, or as a special token of love. Families often revolve around what happens at meal times. A voluptuous and curvy body is a sign of wealth and health in many cultures. Even for Australian males, being “well-built” and “big” is a sign of masculinity and of being able to provide and protect for a family. You might come from a culture where cooking and kitchens and baking and food is a major part of life. All of this helps us to understand why it is so hard to see your loved one begin to lose their interest or ability to eat. Food is not just nourishment for the body but for the soul as well. It provides a way of bonding and expressing love. As you read the rest of this page you might start to see that as death approaches, eating can become an uncomfortable (or even painful) chore: Instead of preventing dehydration, fluids can cause problems for the fragile tissues and organs. When this happens it is important to grieve this change but recognise that it is time to learn new ways of bonding and expressing love.
The body’s changing needs
As the body “winds down,” the metabolism changes and the requirement for food and fluids change. Often the sense of smell and enjoyment of food changes. Foods that once were favourites might make your loved one feel ill now. If there is a blockage in the oesophagus or bowel then eating may cause pain and vomiting. Advanced disease, especially cancer, causes a dramatic change in the metabolism which is often resistant to treatment and even resistant to special diets and nutrition shakes. If your loved one is able to eat, then this is a special time of life when it is important for them to be able to enjoy what food they can rather than making them stick to a strict diet. Where as we are used to thinking that high calorie foods are “bad” it is now important to make the food “work” for your loved one: They may have little energy of their own so snacking on chocolate (for example) which can provide some immediate energy can help.
What about fluid through a drip?
A number of changes happen toward the end of life including the winding down of the kidneys and the ability of the heart to pump blood. Other things change like protein levels in the blood decrease (even with the use of high protein diets). All these changes can lead to fluid moving into tissues and pooling in the arms, legs and face. When this happens it can cause more distress and discomfort to continue to give “normal” amounts of fluids (either by mouth or through a drip). It is important to think about what your loved one has requested previously if they are no longer able to communicate now. Many people want “extra time” while they are alert and active, and it is possible (but not certain) that fluid through a drip may privide this. Often patients but don’t want to be “kept alive” by “artificial means” (like fluids or food in a drip) once they are near death or near unconsciousness. It is important to know what is important to your loved one and the family because everyone is different.
Cachexia (very low body weight)
This can be a very distressing change. For some people, weight loss may have been the first sign that they had cancer. Many men who have lost weight feel like they have lost their masculinity. One patient I saw last year spoke of feeling “ashamed and humiliated” about his body now that he had lost so much weight. This sort of weight loss which is related to advanced disease would not change even with an extremely high calory special diet. Some families spend thousands of dollars on special shakes and foods but unfortunately what we usually see is that the weight continues to drop off. This can be quite scary. I looked after a young mother who was dying and she weighed only about 28kg in the days before her death. Her husband was worried about what the children would think and whether they might be scared. What we were able to show him was that the children would take their cues from him: He could be free to treat her as he always had–with great love and affection–he sat next to her on the bed and stroked her hair and told his usual jokes. The end result was that this experience was “normalised”. Losing weight to this extreme is a pointer that death is very near but we don’t have to hide away from it or be afraid–your loved on is just the same person they have always been even if their body has changed.
Dad coughs when he eats now…
Toward the end of life you might notice that your loved one coughs after eating or drinking. Sometimes this can even become a terrifying experience of choking. This might signal that the food or fluid is going into the lungs rather than the stomach. A common cause of this is the overwhelming fatigue of the muscles of swallowing. If they are hungry and want to eat then you could get a dietician to give advice about eating when sitting forward, or having special thickeners added to help fluids go down the right way. If there is a tumor blocking the oesophagus but your loved one is otherwise feeling ok they might want to think about radiotherapy or oesophageal stenting or laser treatment to open up the food-pipe again.
Pain when swallowing
This is common after radiotherapy and can be caused by inflammation of the fragile soft tissue of the oesophagus. It can be eased by the use of liquid anaesthetics like “lignocaine viscous”. controlling “heartburn” or “acid reflux” might help with common medications your doctor can tell you about (eg “somac” or “zantac” or “gaviscon”).
If your loved one has trouble (or pain) swallowing but they still want to eat, then think about easily digestible and soothing foods like ice-cream, pureed fruits, custard or yoghurt. Of course, if they don’t feel like eating, and are not enjoying eating, then it is important to respect that.
Don’t forget that “thrush” (a fungal infection) is common and can cause mouth pain (look in the mouth for white blobs on the back of the throat or tongue or cheeks). If you think your loved one has oral thrush, then talk to the chemist or get a script for “nilstat” drops from your doctor.
Mum has stopped eating and drinking and her mouth is dry
At this stage it is important to pay attention to good “mouth care”. A dry mouth is rarely changed by giving fluids into the skin or into a vein. The best thing is washing the mouth every few hours with large soft cotton swabs. You should dip the swabs in half strength benzydamine HCL (ask your chemist) or “Biotine” or something similar. After this you can coat the mouth and cheeks and tongue with artificial saliva and put paw-paw ointment or vaseline on the lips.