Facts about stopping eating and drinking at the end of a terminal illness
This information is intended to educate rather than to prescribe a course of action. It relates to situations where there is a competent patient with a terminal, end-stage illness. There is no discussion of artificial nutrition and hydration.
What is “Patient Refusal of Nutrition and Hydration” or PRNH?
Patient Refusal of Nutrition and Hydration (PRNH) is the medical term for when a patient with a terminal illness decides to stop eating and drinking. It’s also referred to as “terminal dehydration” or “voluntary cessation of food and fluids.”
Why do some patients choose to stop eating and drinking?
At the end of a terminal illness, a decrease in appetite is normal. This is consistent with the natural dying process in which the body begins to shut down, and eventually, the ability to swallow may be lost. Depending on the disease, stopping eating and drinking may relieve symptoms such as painful tumors, nausea, vomiting, and problems with elimination. For some people, refusing food and fluids is a matter of wanting greater control over their death.
What are the physical effects of stopping eating and drinking?
Dehydration is what really can help provide pain relief.
Pain? Evidence suggests that patients who stop eating and drinking (resulting in dehydration) feel less pain. The aspect of dehydration is really the key to the analgesic effect that can provide relief from pain. The nervous system is dulled and the body releases chemicals which provide this natural analgesia (pain relief). Doctors describe some patients as experiencing “serenity,” at the end of their life. Less fluid in the body may alleviate pressure from painful, fluid-filled tumors, and ease discomfort associated with eliminating waste from the body. (Patients may experience distress when they are moved onto a commode or changed following urination or a bowel movement.)
Euphoria or a heightened state of well-being or bliss has been reported in patients near the end of their life who have become dehydrated.
Hunger? As most end-stage, terminally-ill patients lose their appetites anyway, they are unlikely to experience hunger in the same way a healthy person might as during a fast. Sometimes, patients who have refused to eat will ask for a taste of a favorite food. However, that’s often all they want, a taste, perhaps because a particular food has a comforting association.
Thirst? Dry mouth rather than thirst is the main adverse effect of stopping eating and drinking. This can be relieved by swishing and spitting water, or using a glycerin swab or sponge to moisten the mouth. Ice chips are another option. Lip balm (that is not petroleum based) helps treat cracked lips.
Weight loss? Weight loss and emaciation will occur over time. Cachexia is also likely (a medical term for muscle atrophy).
Water Retention (edema)? This may be less due to reduced fluid intake.
Congestion (secretions)? Decreased secretions in the chest area may result in less coughing and congestion. This reduces the need to suction fluids when a patient is very congested.
Lethargy and fatigue? Patients may feel sluggish and tired over time.
Skin integrity? The skin will lose its elasticity and may be more fragile.
Sensation levels? The nervous system will be dulled, (a benefit when there is pain) and, over time, patients may relate less to their surroundings as they near a coma-like state.
Bowel movements and urination? Less going into the body means less need for elimination, reducing discomfort.
Nausea and vomiting? This may decrease in accordance with decreased intake. There may also be reduced bloating.
When a patient stops eating and drinking at the end of their life, what will their dying process be like?
Most patients will weaken and slip gently into a coma. Electrolyte imbalances eventually result in an abnormal heart beat (arrhythmia). The heart stops and the patient dies.
When a patient stops eating and drinking, how long will they take to die?
There’s no set time frame in which this may occur. Many factors may influence the timing of death, including the nature of the disease. It may be a few days or a few weeks before the patient dies.
Do patients have the right to decide to stop eating and drinking?
Yes. In accordance with laws around a patient rights of self-determination, competent patients may decline food and fluids. Their right to bodily integrity also allows them to refuse invasive procedures such as artificial nutrition and hydration.
References
A Handbook for Mortals. Guidance for People Facing Serious Illness. Joanne Lynn MD,
Joan Harrold MD. 1999.
“Nurses Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death.”
The New England Journal of Medicine. Linda Ganzini, et al. Vol 349; 4 pp 359-365. 2003.
“Dehydration Near the End of Life.” Annals of Long-term Care. Moira Fordyce. 8(5) May 2000.
“Allowing Patients to Die: Practical, Ethical, and Religious Concerns.” Journal of Clinical Oncology.
Marc J. Kahn et al. 2003. 21(15): 3000-3002.
“Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids.” Annals of Internal Medicine. Timothy Quill, et al. 132: 403-414. 2000.
“Adults with Terminal Illness: A Literature Review of their Needs and Wishes for Food. Journal of Advanced Nursing. Nic Hughes, Richard D. Neal. Vol 32, Issue 5, pp 1101-1107. Nov 2000.
The Best Way to Say Goodbye: A Legal Peaceful Choice at the End of Life. Stanley A. Terman, PhD, MD. 2007. www.thirstcontrol.com. www.CaringAdvocates.org.