Every day countless patients are vulnerable because of their inability to express their needs. This can lead to situations where their needs are not met.
The most highly publicized example is the case of Terri Schindler Schiavo, a woman who had brain damage, but was not dying. Her husband did not want her fed. Her parents wanted to care for and continue feeding her. After a lengthy court battle in the Florida courts, the federal courts, and eventually the U.S. Supreme Court, the husband was given the authority to have Terri Schiavo’s feeding tube removed. Schiavo died in March 2005 of starvation and dehydration. To learn more about Terri’s story and the plight of the disabled in our society, click here to visit the Life and Hope Network founded by Terri’s family.
What followed from Terri’s death was a much needed national discussion as to whether food and water, even when artificially administered, remain a medical treatment or basic care. The removal of nutrition and hydration from patients who are incapacitated but not necessarily dying has become all too common. Simply put, it is tragic and unnecessary for a person in our country to die as a result of starvation and dehydration.
There are two critical questions to ask when a recommendation is made to withhold food and water:
Today, nutrition and hydration should be defined as standard care, rather than a form of treatment that can be arbitrarily withdrawn. Recently, many in the medical community have agreed with this definition. Even the late Pope John Paul II wisely noted the distinction between “medical procedures that may be burdensome, dangerous, or disproportionate to the expected outcome” and “taking away the ordinary means of preserving life, such as feeding, hydration, and normal medical care.” When someone is imminently dying, food and hydration are no longer needed.
In particular, individuals who have been certified as being in a permanent vegetative state are worthy of particular respect and care. The Catholic Church has provided very specific guidelines for addressing questions concerning the ordinary care of individuals with PVS limitations:
However, because some remain hostile to the provision of food and fluids for those they deem to have a poor “quality of life,” it is essential that everyone understand these facts. Allowing people who are not dying to die of starvation and dehydration by withholding or withdrawing food and fluids is legal in all 50 states. This trend to deprive patients of food and fluids began around 1983 with numerous court cases around the country. A recent short film documents this tragedy: click here to view “Hungry”.
Just because one can no longer swallow does not mean they should not be fed and provided food and water. Many medical conditions may hinder one’s ability to swallow for either a short or long period of time; this inability to ingest food does not mean the patient is terminal or that death is imminent. For short term use a feeding tube would be needed as a bridge to recovery, giving the patient enough nutrition in order to heal and be sent home. For long-term use, a feeding tube would supply adequate hydration and nutrition in order to preserve life.
This differs from a terminally ill patient at the brink of death. At this point, one may desire only a few sips of water or very small amounts of nourishment. Their body systems are shutting down and they can no longer digest food. Typically, death is imminent in this situation, and assisted hydration and nutrition would be considered burdensome and extraordinary care.
The following is a discussion of the ethical — not the legal – considerations surrounding the topic of “artificial feeding” which is the most common ethical dilemma facing patients and their families today:
What is “artificial feeding”?
“Artificial feeding” is not a medical term. It’s a catch phrase that is generally thought to mean food and fluids provided by means of tube.
Why prolong the lives of people who are severely brain damaged or are in a persistent vegetative state (PVS) or coma? Wouldn’t it be better to let them die a peaceful death?
PVS is a term used to describe someone who is awake but unaware. The person has no apparent ability to understand or respond. Coma, on the other hand, is a sleeplike state from which the person cannot be wakened. Often these terms are used inaccurately. A person who is in a coma or persistent vegetative state can’t say she’s thirsty. Similarly, a severely brain damaged person may be unable to express himself. Such individuals will not even understand what is happening. They’ll simply feel thirst and, within five to 21 days, they will die of dehydration. Removing their food and water isn’t “letting them die.” It’s making them die. Nor is this type of death “putting them out of their misery,” as some would say. Instead it’s putting them into misery – the misery of dying in an excruciating manner.
Aren’t painkillers given to prevent suffering during the dehydration?
Yes. This is often done. The fact remains, however, that the pain is caused by denying food and water to the person.
Is taking away artificial feeding the same as euthanasia?
Taking away food and water, no matter how they are provided, is euthanasia if the purpose of doing so is to cause death.
Does this mean that food and water must always be provided to every patient?
No. There are situations where giving food and water, whether by mouth or by tube feeding, would be futile or excessively burdensome. For example, patients who are very close to death may be in such a condition that fluids would cause a great deal of discomfort or may not be assimilated. Food may not be digested as the body begins “shutting down” during the dying process. There comes a time, when a person is truly imminently dying — within hours or a few days, not within weeks or months — that a simple wiping of the brow and moistening the lips with ice chips may be all that need be done. No one is saying that food and fluids should be forced on such a person. This would be burdensome and futile. Additionally, in extremely rare case, where the very means of providing food and fluids would be excessively burdensome and/or painful, a decision to withhold feeding in such a situation would be made to prevent subjecting the patient to the means itself. But, practically speaking, decisions to deny food and fluids do not center around “burdensome” means. The decisions, instead, focus on people who are considered “burdens.” The real questions are, “Do we continue to feed people who are disabled, demented, abandoned, or unwanted? Or do we end their lives by the universally effective deadly measure of stopping food and water?” Removing food and water because the person is considered burdensome or “better off dead” is a way of killing the person – directly, intentionally, and cruelly.
Isn’t tube feeding an extraordinary means of keeping people alive with new and expensive medical technology?
Tube feeding is neither new nor expensive. It’s been in use for more than 100 years. Two articles, published in the 1896 “Transactions of the Kentucky Medical Society,” described the ease with which feeding by gastrostomy tube (g-tube) was being accomplished at that time. The food placed in a feeding tube is not expensive. A full day’s supply generally averages about $8. Nor is it exotic. Next time you’re shopping in your neighborhood supermarket, pick up a 32-oz. can of Ensure in the liquid diet food section. Pick any flavor. It comes in chocolate, strawberry or vanilla. Read the label on the back, and you’ll find that you can drink it as a fully balanced meal or that it can be used for tube feeding. If it’s a quick meal for you and me, how can it be “extraordinary medical treatment” when it’s placed in a feeding tube? It seems doubtful that those who contend that food and fluids become “treatment” if taken by tube would tolerate others calling penicillin or anti-depressants “food” when taken by mouth. Tube feeding isn’t as rare as some may think. A 1987 governmental report found that at least 848,100 people per year receive food by means of a tube in hospitals, nursing homes, or their own homes.
When someone can’t swallow, isn’t it better to stop artificial means to prolong life?
No. Some who receive nourishment by tube do so because they can’t swallow, but this doesn’t affect their ability to hold down jobs or, for that matter, to take unaccompanied vacations to faraway places. In most cases, however, those who are tube fed are dependent on others for much or all of their care. In long-term care facilities, people who can chew and swallow if spoon-fed are often placed on tube feeding for the convenience of caregivers. After months of tube feeding, the ability to swallow can become atrophied. Ironically, this then presents the opportunity or excuse to remove food and water, because it is provided by “artificial means.”
The Reality of Medical Discrimination
Laws on declarations concerning life-sustaining procedures and physician orders for scope of treatment are supposed to be about empowering patients and their families, applying their own values, to make decisions about when they want life-preserving medical treatment, food, and fluids. However, people with severe and profound disabilities are too often marginalized, ignored, and discarded by a society that increasingly seeks to promote those it sees as more perfect and whole. When these individuals are pushed aside by society as used up and irrelevant, we take a step backwards towards the unspeakable barbarism that people only matter when they are like the rest of us.
Some health care providers consider life-preserving treatment “medically inappropriate” when it could preserve the patient’s life but when, because of the patient’s disability or age, they – in disagreement with the patient or the patient’s family – think the patient’s “quality of life” is too poor. A study in the Journal of Law, Medicine, and Ethics, based on physician interviews, found that “Most often when futility arguments were invoked, they were used to support evaluative judgments based on quality of life considerations, only rarely to designate treatments that were medically inefficacious. Indeed, throughout the transcripts, physicians sought to frame value judgments as medical decisions.”
A recent example of medical discrimination can be seen in the decision process concerning Baby Joseph Maarachli of Canada’s need of a tracheotomy (See Life News report by clicking here). The family of 20-month-old Joseph Maraachli, who suffered from a rare, progressive neurological disease rendering him in a vegetative state, understood his long-term prognosis was grim. But they sought a medical procedure that would, at the minimum, allow boy to die at home instead of in a hospital bed hooked up to a respirator. But the boy took center stage in a right-to-life dispute after the Canadian hospital denied to perform the tracheotomy and reportedly recommended he be removed from life support, according to reports. His parents appealed to Canadian courts to overturn the hospital’s decision, but were denied. Baby Joseph was eventually removed from the Canadian hospital and transported to a one in St. Louis that performed the procedure allowing the baby to breath and return home (See Fox News report by clicking here).
A 2010 study entitled “Age as a Deciding Factor in the Consideration of Futility for a Medical Intervention in Patients Among Internal Medicine Physicians in Two Practice Locations” found through a survey of doctors that “ based on the physiologic features and vulnerability status of elders (patients older than 65 years), many physicians may consider age as an issue of medical futility when deciding therapy.” It noted: “Less experienced physicians . . . were more likely to rate elder cases as futile compared with experienced physicians. ”
We need to ensure that treatment, nutrition, or hydration that in reasonable medical judgment could preserve the patient’s life cannot be denied just because of a belief that the lives of those who are elderly or have a disability or terminal illness are less valuable than the lives of those who are younger or do not have a disability or terminal illness. Patients and their families, not others, should be able to decide whether their lives are worth preserving with life-saving medical treatment, food, and fluids. No one should be able to impose death against their will because of their age or disability.
Medical Discrimination against children and adults with disabilities is consistently seen as a factor in the denial of treatment and life through so called “therapeutic abortions” (click here for video). In particular selective disability abortions ends the life of 90% of children diagnosed (accurately or inaccurately) with Down syndrome as well as other birth defects or congenital anomalies. It shouldn’t be left to the individual subjective judgments of particular doctors or hospitals under the vague cover of calling some treatment “medically inappropriate.” That would be very unfair. One hospital ethics committee might say it is medically inappropriate to treat someone with Down syndrome, while a hospital ethics committee in another part of the state might save the life of the person with Down syndrome, but not with advanced Alzheimer’s Disease. One might draw the line for aggressive therapy at 85 years, while another might ask whether the 85-year old gets out and gardens in her back yard. Leaving rationing decisions up to individual health care providers would result in great inequity, often based on their individual views and prejudices, instead of on a socially-debated and determined coherent and fair method of limiting health care.
Cruz-Oliver, Dulce M., MD, David R. Thomas, MD, Jeffrey Scott, BS, Theodore K. Malmstrom, PhD, Wilfredo E. De Jesus-Monge, MD, MSc, and Miguel A. Paniagua, MD. “Age as a Deciding Factor in the Consideration of Futility for a Medical Intervention in Patients Among Internal Medicine Physicians in Two Practice Locations.” Journal of the American Medical Directors Association 11.6 (2010): 421-27.