Food and Water: What to Expect in the Final Days of a Terminal Illness
Food and water represent life. You understand that, without nourishment and fluid, you will die in a very short time. Fasting for just a day can make you feel weak. If you have ever been on a fast, even if it is for three hours, I am sure you remember the hunger pains. It may be hard for you to imagine your loved one's loss of appetite not causing them the same horrible pains. You may have a knee-jerk reaction to help them, even if this means feeding them through tubes to maintain nutrition in terminal illness.
Over the years there has been a lot of controversy over whether food and water (or fluids) should be forced upon a person in the final stages of their terminal illness. Years ago, there were no options. The terminally ill person would be force-fed up to their last breath. They had no say in the matter. That all changed in 1991.
In 1991, the United States Congress passed the Self-Determination Act. This law recognized the patient's right to make their own medical decisions, even if it meant refusing treatments including being force-fed via tube feedings or intravenous fluids.
The law also requires hospitals, home care agencies, and nursing homes with Medicare contracts, to provide patients and their families with information regarding Advanced Health Care Directives. If the patient does not have an Advanced Health Care Directives in place at the time of their admission, the facility can provide them with a form.
The purpose of the Advanced Health Care Directive is allow an individual to clearly state what healthcare treatments they would want (or not want) in the event they are unable to speak for themselves. With so many healthcare options available today, the more specific the document can be, the better it is.
By having an Advanced Health Care Directive in place, the agent(s) appointed to speak on the individual's behalf do not have to second guess what the individual's wishes may be. At a potentially very stressful time having such a document in place can take the some of the pressure off their shoulders.
Knowing about this law can open the dialogue for friends and family members to discuss what their healthcare choices are and if they have made them known on an Advanced Health Care Directives form.
Studies to assess if a person in the final stages of their illness "suffers" without food and water revealed that they do not suffer. The studies showed that the body begins to shut down in the final stages, making it harder to process food or fluids. The individual may have a feeling of bloating and fullness. They may experience constipation, nausea and vomiting. There is an increased risk for choking and aspiration pneumonia as swallowing becomes more difficult.
It may be difficult to support your loved one's Advanced Directives wish to forgo the use of tube-feedings or intravenous hydration once they have stopped eating and/or drinking. Try to remember that, as their organs fail, their inability to process the food and water (or fluids - from any source) makes them very uncomfortable. As their kidneys shut down, they may experience the sensation of drowning in their own secretions. It may help to know that, as their intake declines, their level of endorphins and ketones increases giving them an analgesic affect. Sometimes doing "nothing" is really doing quite a lot!
Understanding how the nourishment and fluid demands change in the final phases of illness and that your loved one is not suffering as the result of their decreased intake hopefully will ease your mind. Now let's look at some of the concerns you may have related to pain management.
Return to What to Expect Final Days and Weeks
Continue to Pain Management