A parishioner related to me a situation concerning her mother who had an advanced stage of Alzheimer’s disease (dementia) and had stopped eating. She had an advance directive indicating that she did not want to recourse on tube feeding to sustain her life. However, her daughter (the parishioner) was confused and morally distraught because she believed that the Church teaches that food should not be denied to any person. She asked, should we recourse to tube feeding to sustain my mother’s life? Is it considered a sin to stop giving her tube feeding? What is the Church’s position on removing tube feedings for patients who are in the advanced stage of their illness?
The cessation of tube feeding is given a separate consideration from other life-sustaining measures because providing food and water has a symbolic meaning of preserving and nourishing life. Pope John Paul II said that the administration of food and water, even when provided by artificial means is a proportionate or ordinary measure.[1] The primary purpose of the provision of food and liquid is not to cure an illness, but to nourish and hydrate the body so that the most basic physiological and psychological processes of maintaining a person’s well-being can take place.[2]
When an individual has come to a point where he/she is no longer able to swallow food and fluids, a medical procedure of administering artificial nutrition and hydration may be initiated. These types of feeding may include the following:[3]
A. Total Parenteral Nutrition (TPN), in which nutrients are delivered intravenously through a central line catheter;
B. Percutaneous Endoscopic Gastrostomy (PEG), —- nutrients are given to the stomach through a tube sutured into patients’ abdomen;
C. Jejunostomy (J-tube), — nutrients are delivered to the small intestine through a tube sutured into the abdomen;
D. Hypodermoclysis, —- nutrients are delivered through a subcutaneous needle or port; and
E. Nasogastric Tube (NGT)—nutrients are provided into the stomach through the nasal cavity. All these medically-provided nutrition and hydration are also referred to as artificial nutrition and hydration or “tube feeding.”
It is morally obliged to provide tube feeding to PVS patients.
The issue of providing artificial nutrition and hydration is controversial especially for PVS or comatose individuals. Society is divided on the issue of foregoing tube feeding to this group. Those who argue in favor of forgoing it claim that patients who are not able to eat do not have the quality of life and must be allowed to die. Those who argue in favor of providing artificial nutrition claim that food, even if given through tube feeding is a basic and ordinary form of nourishment that sustains and preserves life. Food and water, even when given through artificial means are not considered treatment regimens. They are basic necessities afforded to all individuals.
Society’s division on this issue was shown during the highly publicized case of Teri Schiavo in Florida. Terri suffered from a cerebro-vascular accident or stroke and had been unconscious for over 15 years. She was in a persistent vegetative state (PVS). The Multidisciplinary Task Force defines PVS as follow:
PVS is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have variably preserved cranial-nerve and spinal reflexes. PVS is a state of unconsciousness present one month after acute traumatic or no traumatic brain injury or lasting for at least one month in patients with degenerative or metabolic disorders or developmental malformations.[4]
PVS patients are usually in a stable condition. They breathe spontaneously, even without the use of ventilators. They carry on other systemic metabolic functions. Although they are not able to feed themselves, they are able to naturally digest and process food. They will eventually die if they are not provided with sustenance through tube feeding.[5]
Terri did not have a written advance directive. She might not have also explicitly expressed her wishes on end of life including the provision of artificial nutrition to her family. As Terri’s confinement in the nursing facility continued, a wrangling between Teri’s husband, who favored forgoing of nutrition and hydration, and her parents who wanted to continue the feeding intensified. Legal battles ensued. The court eventually decided the case in favor of her husband, which allowed the removal of the tube. Terri died on March 31, 2005, at the age of 41.
What does the Church teach about the provision of artificial nutrition and hydration to PVS patients?
Pope John Paul II made a stand on artificial hydration and nutrition on his allocution or speech to the members of the World Federation of Catholic Medical Associations and the Pontifical Academy for Life on March 20, 2004, concerning the provision of nutrition and hydration to PVS patients. The Pope said that nutrition and hydration is an ordinary or proportionate measure and should be given to any person even those who are in a persistent vegetative state and comatose state. The Pope added that the obligation to provide the usual care due to the sick includes the use of nutrition and hydration. There should be a presumption in favor of providing food and water to all patients, even to those in a comatose state.[6] Tube feeding must be granted unless it fails to achieve its principal aims of hydrating and nourishing the body or if it poses an excessive burden to patients.
It is morally acceptable to remove tube feeding when the body is no longer able to assimilate feeding.
There are some circumstances when it is morally acceptable to remove tube feeding. When the body can no longer absorb food and water, they provide no benefit and may be withdrawn.[7] The Catholic teaching, in general, allows therapy to be foregone when it would result in a grave burden for patients. In the Ethical and Religious Directives for Catholic Healthcare, the USCCB agrees that nutrition and hydration should be provided if it keeps the person alive. It should be provided to terminally-ill patients whose death does not appear to be imminent.[8] A terminal condition is defined in Florida statute as a condition caused by injury, disease, or illness from which there is no reasonable medical probability of recovery and which, without treatment, can be expected to cause death.[9]
Tube feeding, however, is not morally obligatory when it brings discomfort and pain to a person who is imminently dying or when a person’s body cannot assimilate it.[10] Tube feeding becomes an unjustifiable burden on a person whose death is inevitable within a few hours or days. This is a circumstance when the use of a feeding tube will become an extraordinary measure, and therefore will not be morally obligatory.[11]
According to Catholic bioethicist, Dr. Daniel Sulmasy, it is morally acceptable to forgo feeding during end stages of pathologic conditions such as cancer, AIDS, Alzheimer’s disease, Lou Gehrig’s disease or Parkinson’s disease.[12] Other cases that may not benefit from tube feeding are serious ailments of the digestive tract, like cancer, and bowel obstruction, which impede the functions of the stomach and intestines to store and digest food. A feeding tube, in this case, may only cause uncontrollable vomiting, and other medical problems. [13]. It is no longer capable of sustaining a person’s life, and may only constitute a futile kind of force-feeding.
The intention to forego feeding when the burdens of the intervention outweigh the benefits is not to bring about death. In this case, we allow the natural process of dying and the progression of illness to take its course. The bodies of such patients begin to shut down and the food may no longer be assimilated by the body. Complications such as repeated aspiration, pneumonia, and infection at the site may occur when feeding tubes are administered for such patients.[14]
Resolution of the case of administration of tube feedings to persons with advanced dementia.
There is a consensus among medical societies that show the burdens of introducing tube feedings to this population. Some of the cited burdens associated with tube feeding on advanced dementia include the following:[15]
a. medical-surgical interventions required to place the feeding tube; b) the potential for infection at the incision site, leading to the possible need for antibiotics and for hospitalization; c) the discomfort experienced from tube feeding and d) the likelihood of requiring physical or chemical restraint to prevent tube pull out.
Some patients may demonstrate irritation at the site of the tube placement and may pull it out repeatedly.[16] Fr. Tadeusz Pacholczyk of the National Catholic Bioethics Center upholds that we must carefully weigh whether such a tube would truly be proportionate to patient’s health in advanced dementia at a point close to death. He maintains that “our desire to comfort and palliate those suffering from an end-stage disease is an important part of the equation in mapping out the best options for healthcare treatment.”[17]
Dying patients may not experience hunger or thirst.
Studies show that dying patients may spontaneously reduce their intake without experiencing hunger or thirst. This stage, called natural dehydration, offers benefits by producing a sedative effect on the brain and reducing secretions and excretions, making the dying process more tolerable.[18] In this instance, providing tube feedings can interfere with the natural course of dehydration that causes severe discomfort to patients facing imminent death. Artificial hydration tends to increase respiratory secretions that may cause aspiration. It can also cause an accumulation of fluids in the abdomen. It makes it more difficult for patients to breathe. Moreso, artificial feeding may expand the edema layer around tumors of cancer patients which contributes to worsening of pain and discomfort.[19]
All of the above factors may be helpful in assessing the administration or placement of tube feeding to other individuals with advanced pathological conditions. The use of tube feeding must always have to be evaluated in terms of the totality of a patient’s condition considering any undesirable effects and the likelihood of benefit. As Catholics, we cannot just demand or refuse artificial nourishment or tube feeding without proper discernment and without asking relevant questions. The use of artificial feedings and intravenous fluids should always be assessed, taking into account their risks and benefits on patient’s overall health and condition.
In case that cessation of tube feeding is conscientiously decided, it is important that healthcare professionals inform surrogates and family members that the patient may cease eating and drinking near the end of life. It is helpful that conversations will include instructions on keeping the patient as comfortable as possible. Some of these interventions include giving medications to avoid irritability, applying ice chips or mouth swabs to relieve dryness, and providing a comfortable environment. These interventions give assurance and relief to family members that despite stopping tube feedings and other treatments, the care rendered to their loved ones continues.
_________________________________________________________________
[1] Pope John Paul II, On life-Sustaining Treatments and the Vegetative State, March 20, 2004, Vatican City, available at http://w2.vatican.va/content/john-paul-ii/en/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc.html
[2] Anthony Fisher, Catholic Bioethics for a New Millennium, 227.
[3] Daniel Sumalsy, MD, Ph.D., Are Feeding Tubes Morally Obligatory? Franciscan Media, available at https://www.franciscanmedia.org/are-feeding-tubes-morally-obligatory/, accessed on December 22, 2017.
[4] Multidisciplinary Task Force, Medical Aspects of the Persistent Vegetative State https://www.ncbi.nlm.nih.gov/pubmed/7818633, N Engl J Med. 1994 May 26;330(21):1499-50
[5]Rev. Germain Kopaczynski, OFM Conv., “Providing Assisted Nutrition and Hydration” in Catholic Health Care Ethics: A Manual for Practitioners, 2nd ed. Edited by Edward J. Fulton with Peter J. Cataldo and Albert S. Moraczewski, OP. Philadelphia, PA: The National Catholic Bioethics Center, 205.
[6] Ibid
[7] Ibid
[8] Ibid.
[9] See The Florida Statute (Chapter 765.101 (22), available at http://www.leg.state.fl.us/statutes/index.cfm?App_mode=Display_Statute&URL=0700-0799/0765/Sections/0765.101.html
[10] Daniel Sulmasy, Voluntarily Stopping Eating and Drinking: Separating the Wheat from the Chaff, October 29, 2014. https://www.youtube.com/watch?v=knxGtBmnADI
[11] Ibid.
[12] Ibid.
[13] Rev. Tadeusz Pacholczyk, Ph.D. Making Sense of Bioethics, Are Feeding Tubes Required? Philadelphia, PA: National Catholic Bioethics Center, December 2006, available at www.ncbcenter.org, accessed on January 15th, 2018.
[14]Ibid.
[15] Nancy Berlinger, Bruce Jennings, Susan Wolf, The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life, revised and expanded 2nd ed. New York: Oxford University Press, 2013, 171-174.
[16] A Catholic Guide to End-of-Life Decisions, The NCBC, as cited by Fr.GermainKopaczynski, OFM Conv., 205.
[17] Rev. Tadeusz Pacholczyk, Ph.D. Making Sense of Bioethics, Are Feeding Tubes Required?
[18] Cleveland Clinic Department of Bioethics, Policy on Forgoing Life-sustaining or Death-prolonging Therapy, http://www.clevelandclinic.org/bioethics/policies/policyonlifesustaining/ccfcode.html.
[19] Rev. Tadeusz Pacholczyk, PhD. Making Sense of Bioethics, Are Feeding Tubes Required?