Ebenezer is spending the late Fall weekend at his remote cabin in the Wilderness Mountains. Just after dark, he lights a fire to ward off the chill air and turns on the radio to listen to the news while getting his fishing tackle ready for tomorrow’s one-mile hike to the closest stream where he expects to catch some beautiful trout.
A news bulletin comes on: “The small plane which was lost last week in the Wilderness Mountains was found this morning. No body was recovered. It appears that Tim Jones, the pilot, who is probably seriously injured, may be somewhere in the area. The search will continue for Jones, who was wearing only jeans and a purple plaid shirt.”
Just then Ebenezer hears a noise at the cabin door. He opens the door and sees a man on the ground. The man — bruised, bloody and wearing jeans and a purple plaid shirt — looks up at Ebenezer. “Help me. Help me,” he says in a raspy voice. “My plane crashed and I’ve been without food and water for days.”
Ebenezer scowls at him. “Look, pal, I don’t care what you want. I’m not going to ruin my vacation by getting involved with you.” He slams the door and watches through the window as Tim crawls off.
Three days later, Tim’s body is found by searchers.
Were Ebenezer’s actions illegal? No.
Did Ebenezer act unethically? Yes.
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:
Since the 1980s, a lot has been said about the provision of food and fluids by “artificial means.” Originally the debate centered on court cases involving people who were classified as being comatose or in a persistent vegetative state (PVS) and who were receiving food and fluids by means of a feeding tube. Over the years, the meaning of “artificial feeding” has expanded and the number of categories of people from whom it is removed has grown.
Currently, cases coming before the courts involve people whom all parties acknowledge are not in a coma or PVS. Two such cases are those involving Michael Martin in Michigan and Robert Wendland in California. (1)
It’s important to recognize that we only hear about the cases that are brought before the courts when there is disagreement among family members or with health care providers. The reality is that decisions are being made every day to withhold food and fluids from non-dying patients.
The following are the questions asked most frequently about what has become known as “artificial feeding:”
Q: What is “artificial feeding”?
A: “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. In fact, in court cases, expert witnesses have testified that “artificial feeding” can include spoon feeding and that the food brought on a tray to a patient in a convalescent home can be considered “medical treatment” because the patient’s diet must receive physician approval. (2)
Q: 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?
A: First, let’s look at what is meant by PVS and coma. News accounts often confuse the two terms, sometimes using them interchangeably. They’re not the same. 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 won’t even understand what’s happening. They’ll simply feel thirst and, within five to 21 days, they will die of dehydration. (Although it’s often said that a person dies of starvation and dehydration. Actually, when food and fluids are removed, the person dies from dehydration, not starvation.)
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. How could dying of thirst possibly be considered a peaceful death?
Q: Aren’t painkillers given to prevent suffering during the dehydration?
A: Yes. This is often done. The fact remains, however, that the pain is caused by denying food and water to the person.
Q: Is taking away artificial feeding the same as euthanasia?
A: Taking away food and water, no matter how they are provided, is euthanasia if the purpose of doing so is to cause death.
Q: Does this mean that food and water must always be provided to every patient?
A: 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.
Q: Isn’t tube feeding an extraordinary means of keeping people alive with new and expensive medical technology?
A: 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. (3)
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. (4)
Q: When someone can’t swallow, isn’t it better to stop artificial means to prolong life?
A: 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.”
Q: Isn’t insertion of a g-tube a very risky surgical procedure?
A: No, it isn’t. In fact, a case that took place a few years ago indicates that the degree of risk may depend very much on the social status of the patient involved.
Ninety-two-year-old Mary Hier had lived in mental hospitals for more than half her life. She thought she was the Queen of England. She wasn’t terminally ill, but because of a throat problem she had received food by means of a g-tube for more than 10 years.
When that tube became dislodged, the health facility asked permission from her court-appointed guardian to reinsert the tube. He refused, and the case went to court. The court, agreeing with the guardian, said that implanting the tube was a “highly intrusive and highly risky procedure.” (5)
Mary Hier’s case got into a Boston newspaper. The paper reported on a similar case at about the same time. The article reported on a 94-year-old woman who was doing well following “minor surgery to correct a nutritional problem.” (6) The surgery was performed on an outpatient basis under local anesthesia.
The woman’s name? Rose Kennedy.
The minor surgery? Insertion of a g-tube.
For Mary Hier — elderly, demented, and without family — the same surgery was described as “highly invasive and highly risky.” For Rose Kennedy — mother of a president and US senators — it was a “minor medical procedure.”
Draw your own conclusions about the degree of risk.
Fortunately for Mary Hier, last minute intervention resulted in her g-tube being reinserted. She continued to live comfortably for many years — happily signing her name “Mary Hier, Queen of England.”
Q: Where is all of this leading?
A: In 1983, reflecting on the possible outcome of the food and fluids debate which was just getting underway, Daniel Callahan, who was then the director of the Hastings Center, wrote that “…a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die.” He further predicted, “Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice.” He noted, however, that there was still a “deep-seated revulsion” to withholding or withdrawing food from patients. (7)
Before answering further about where this is leading, it’s necessary to point out that many people have not thought carefully about the implications of withholding food and water from non-dying patients. Furthermore, there has been a great deal of confusion since many people assume that if something is legal it’s ethical. Thus, it’s important to recognize that not every person who has indicated approval for removing food and fluids is knowingly promoting euthanasia. Nonetheless, there’s no question that removing food and fluids has been intended by euthanasia leaders to be a stepping stone to euthanasia by means of lethal injection.
At a 1984 international conference of euthanasia leaders, one speaker explained that once people see how painful death by starvation and dehydration is, then, “in the patient’s best interest,” they will accept the lethal injection. (8)
In 1996, Choice in Dying began to list dehydration in a guide to end-of-life options. The organization noted that among the legal ways to end life was to do without food and water: “A tray of food is considered treatment” and thus can be refused. (9)
The food and fluids debate has also put a whole new twist on the definition of “terminal illness.”
Speaking at the 1998 Hemlock conference, Connie Holden, the nurse-administrator of a Colorado hospice, explained her involvement with the dehydration deaths of three nonterminally-ill patients.
One was an elderly woman who was so physically healthy that she hadn’t seen a doctor for years. She had what Holden referred to as “the dwindles” — the aging process — and had decided to stop eating and drinking so she would die The woman — not dying, not even ill — was admitted to the hospice so that she could receive any pain control that might become necessary as she starved and dehydrated to death.
Asked how this woman or the other patients would be considered “terminally ill,” Holden stated, “The definition of terminally ill, of course, is six months or less and we knew that all three of these patients would die in six months or less if they stopped eating.” Thus, the patients were deemed to be terminally ill. (10)
Using this new interpretation, a law permitting assisted suicide or euthanasia for persons who are terminally ill could apply to virtually anyone if that person is no longer receiving food and water.
1. In both the Martin and Wendland cases, the men were severely disabled but were able to do simple tasks. Their wives sought to remove food and fluids but, because other family members objected, the cases reached the courts.
Mary Martin lost her quest to remove her husband’s food and fluids (In re Martin, 538 N.W. 2d 399 (Mich. 1995)).
Addressing the “Families on the Frontier of Dying” conference in Philadelphia on May 21 1998, Mrs. Martin said, “He [Michael] is not PVS. He is conscious, awake….” Referring to the fact that her husband was injured in a car-train accident, she asked, “Do you know why car insurance rates are so high?” “Because people like Mike are being forced to stay alive. In his condition now he could probably outlive me and our children. He’s in well enough health, thanks to the feeding tube, he could outlive us all. And for what? Because his mother and sister aren’t willing to let him go.” She further stated, “He does nothing but smile…. Patients like this can smile and nod their head….They could be the organ donors who are so desperately needed.”
Rose Wendland also lost her quest to remove food and fluids from her husband Robert. Conservatorship of Wendland26 Cal 4th 519; 28 P.3d 151 (2001).
2. Cruzan v. Harmon, 760 S.W. 2d 408 (Mo. 1988) (no. CV 384-9P). Transcript, p. 163 and 228; McConnell v. Beverly Enterprises, 209 Conn. 692, 553 A. 2d 596, (1988)(No. 0293888), Transcript, p. 56; Testimony of Eric Cassell, M.D., before the Committee on Finance, United States Senate, May 5, 1994, p. 4.
3. McMurtry, “Modern Gastrostomy for Stricture of the Esophagus, with Report of a Case,” and Coomes, “Gastrostomy, with Report of a Case,” Transactions of the Kentucky Medical Society (1896).
4. Office of Technology Assessment, U.S. Congress, Life Sustaining Technologies and the Elderly, (1987), p. 294.
5. In re Hier, 18 Mass. App. 200, 464 N.E. 2d 959, 964 (1984).
6. “Rose Kennedy ‘doing well’ after surgery,” Boston Globe, July 29, 1984, p. 35.
7. Daniel Callahan, “On Feeding the Dying,” Hastings Center Report, October 1983, p. 22.
8. Helga Kuhse, Ph.D. of Monash University at the World Federation of Right to Die Societies’ fifth biennial conference held September 20-23, 1984 in Nice, France as quoted in R. Marker, Deadly Compassion, (Wm. Morrow and Co., 1993) p. 94.
9. Lori Montgomery, “The options – legal and not,” Detroit Free Press, Dec. 26, 1996.
10. Connie Holden, RN at the 10th National Hemlock Society Conference, June 7, 1998 (transcript of Tapes SU1 and SU2).