It's common and completely normal for patients facing a terminal illness to experience loss of appetite with a decreased interest in food or drink and weight loss. As the illness progresses, patients will either be unable to take in food or fluid by mouth or they will refuse to eat or drink. It may be that the patient has been ill for some time and has been receiving artificial nutrition but not getting any better. In either case, the question whether to withhold or withdraw artificial nutrition may arise. This can be a cause of great unease and distress for the patient’s loved ones and caregivers.
Artificial nutrition is the delivery of a patient’s nutritional support in a fashion that does not require the patient to chew and swallow. This can be given with total parenteral nutrition (TPN), or through a nasogastric tube (NG tube) or gastrostromy tube (G tube or PEG tube).
There are many things that can cause loss of appetite and reduced oral intake of food and fluids near the end of life. Some causes are reversible, such as constipation, nausea, and pain. Other causes may not be treated effectively, such as certain cancers, altered states of consciousness, and weakness of the muscles necessary to eat. Reversible causes should be identified by the patient’s physician and addressed. If the cause is unknown or not treatable, the decision whether to withhold or withdraw support may need to be made.
Making the decision to withhold or withdraw artificial nutrition and hydration raises intellectual, philosophical and emotional conflicts for many people. It is often helpful for people faced with that difficult decision to understand what science and medicine have found regarding artificial nutrition and hydration at the end of life.
The Benefits and Risks of Artificial Nutrition and Hydration
In our society and culture, food and fluids are viewed to be essential to sustain life and to speed healing and recovery from illness. It goes against most peoples values to withhold food and fluids from a critically ill or dying patient. Yet we all know that knowledge is power. As with any medical decision you are faced with, it is important to understand the benefits of risks. Is artificial nutrition beneficial for the terminally ill patient? Let’s take a look at what medical research can tell us:
- Total Parenteral Nutrition –TPN is an imperfect form of nutrition that is only used short term. It is delivered through a central line, which is usually inserted at the neck or armpit and threaded through a vein where it ends up near the heart. It was once thought that patients with cancer could benefit from TPN. The hope was that it could reverse the loss of appetite and severe weight loss that cancer patients suffer and improve their prognosis. However, several studies found that it neither helped cancer patients gain weight nor improve their quality of life. On the contrary, it actually increased the risk of infections and problems with the central line that were dangerous to the patients.
- Nasogastric (NG) Tubes – For patients who are unable to swallow, whether it’s due to invasive tumors, weakness, or neurological disorders, feeding through a tube has been the standard delivery of nutrition. The nasogastric tube is the easiest way to achieve this. A tube is inserted through the nose and down the throat into the stomach. A liquid food formula is given through the tube continuously at a slow rate or several times a day with a larger dose. Like TPN, however, multiple medical studies have shown that survival rates for terminally ill patients are no different if they are artificially fed rather than not. Again, the risks are dangerous. Patients with NG tubes have a higher risk of pneumonia which can significantly lower their survival rate. NG tubes can also be easily pulled out, causing distress to both the patient and their loved ones.
- Gastostomy (G) Tubes – A gastrostomy tube is one that inserted directly into the stomach by a surgical procedure. A percutaneous-endoscopic gastrostomy, or PEG tube, is done endoscopically and is less invasive. With either of these tubes there is less risk of the patient pulling the tube out. There is still the risk of pneumonia, however. Just like the nasogastric tube, there is little evidence that feeding through a gastrostomy tube will increase the health or life expectancy of terminally ill patients.
- Intravenous (IV) Hydration – If a patient can no longer drink fluids or isn’t drinking what his caregivers think is enough fluid, the caregiver may be tempted to ask for IV fluid. Fluids can be delivered through a small needle that is inserted in a vein and hooked up to tubing. Studies have shown that administering fluids to a terminally ill patient at the end of life offers little, if any, benefit. Risks include infection at the insertion site or in the blood, and fluid overload resulting in swelling or even breathing problems in more severe cases.
20 Common Problems End of Life Care.B. Kinzbrunner, N.Weinreb, J. Policzer
HPNA Policy Statement Artificial Nutrition and Hydration in End of Life Care