CHAPTER 8. SUFFERING AND THE PROVISION OF ARTIFICIAL NUTRITION AND HYDRATION

8.01 Employment of Artificial Sustenance; Introduction

8.02 Nutrition and Hydration as Part of Dying Naturally

8.03 Methods of Artificial Nutrition and Hydration

8.04 Do Terminally Ill Patients Suffer Starvation and Thirst?

8.05 Considering Artificial Sustenance

A. Benefits of Forsaking

B. Emotional Aspects

C. Societal Aspects

D. Religious Aspects

E. Ethical Aspects

F. Legal Aspects

G. Traditional Medical Practice

H. Palliative Care Medicine

I. Feeding Tubes

8.06 Author,s Opinion

8.07 Reaching a Decision

8.01 Employment of Artificial Sustenance; Introduction

Many terminally ill patients go through periods when illness temporarily interferes with the desire or ability to eat and drink. Among the most common causes are the side effects of cancer chemotherapy and reversible physical abnormalities involving the mouth, throat, esophagus, stomach, or intestinal tract. During such periods, artificial nutrition and hydration by feeding tubes or by intravenous fluids is clearly justified. In contrast, artificially maintaining of sustenance (nutrition and hydration) on a permanent basis through the end-stages of a terminal illness is a totally different issue involving major potential conflicts between patients, physicians and caretakers involving a combination of medical, legal, moral and ethical concerns.

Many of these concerns were addressed in a 1990 article in the Lancet Medical Journal with the enticing title: "The Sloganism of Starvation." [Ahronheim JC, Gasner MR, 335 Lancet 2/3/1990 278-279] In this article the authors stressed that the use of the word "starvation" to express "inadequate nutrition" and "thirst" to express "under-hydration" were provocative terms but did not accurately reflect what happens when these conditions occur during the end-stages of terminal illness. They noted that until the end of this century, people who grew too old, too disabled, too weak, or too sick to eat and drink died without artificial nutrition and hydration. That the natural tendency of sick people to reject food and fluids should be considered a natural part of the illness and the dying process. According to the authors, it is the technology of supplying nutrition and hydration to the terminally ill patient who forsakes food and fluids which is unnatural and artificial, while it is the rejection of food and fluids which is natural. And that the provision of artificial nutrition may in fact be better viewed as forced feeding, frequently resisted by the patient through the only remaining mode of expression, struggling to pull out the tube.

According to the authors, the cruelty and abandonment implied in the word "starvation" was not relevant to the dying patient. Indeed, requiring artificial feeding to be continued itself was viewed as potentially cruel. In their view, and the view of most clinical physicians involved in palliative care of the terminally ill patient, it is indeed the artificial feeding and hydration, not its withdrawal from debilitated patients, that is gruesome, cruel, and violent in nature.

Because of its importance, the question of patient suffering and the decision to forsake artificial nutrition and hydration is being addressed in two separate chapters in this book. In this chapter I address the use of artificial nutrition and hydration when the patient can no longer maintain an adequate intake on his or her own, the feedings being intended to prolong life. In the later chapter we will discuss the patient,s right to refuse nutrition and hydration as a means of controlling one,s own death. In neither chapter am I referring to the situation in which the use of artificial nutrition and hydration is undertaken as a temporary medical measure during a reversible condition which is expected to get better or in which there is hope the patient will improve and regain the ability to eat and drink.

8.02 Nutrition and Hydration as Part of Dying Naturally

Throughout history, natural death from chronic illness was accompanied by dehydration and malnutrition because of the natural tendency of terminally ill patients to stop eating and drinking. In retrospect, it is likely dehydration frequently played a major role in the final event. This, however, changed with the advent of intravenous fluid therapy. Once developed, I.V. fluids became a routine part of terminal care for all hospitalized patients, thus ending the effects of dehydration on the dying process. For better or worse, two different patterns came to exist side by side. Death itself didn,t change, just the particulars of the dying process, by dehydration at home, by other means in the hospital.

In more recent years, as more patients come to die in hospitals and intravenous therapy is increasingly used in the home care setting, even fewer patients are dying without I.V. fluids, but there is little, if any, evidence this is for the better. In fact, there is abundant evidence the reverse is true, that dehydration is a kinder death than others. This has led those medical providers and facilities most closely related to palliative care in the dying patient, the hospice movement, to routinely forsake artificial hydration in the final stages of terminal illness whether in the home or in an inpatient facility.

The major issues in the terminally ill patient has thus changed from whether nutrition and hydration can be adequately maintained to whether or not it is desirable to employ these techniques in the delivery of care.

8.03 Methods of Artificial Nutrition and Hydration

The frequent need to maintain patients through periods of reversible illness when oral food and fluids were either impossible or harmful to the patient,s condition has led to extensive development of techniques for artificial maintenance of nutrition and hydration. All of these techniques, developed for use in non-terminal situations, can also be applied in the case of the terminally ill patient if so desired. The following discusses the major methods employed:

1. Hypodermoclysis. Many years ago it was common in both hospitals and nursing homes for fluids to be given to the patient by hanging a bottle of water containing a little sugar and/or a little salt and attaching it to a needle placed under the skin of the upper legs through a tube with a mechanism to regulate the rate of flow. This method was actually quite effective in maintaining body fluids and is still used at times, but tends to cause more problems with infection than properly employed intravenous fluids discussed next. This process, hypodermoclysis was essentially limited to provision of fluids, not nutrition, and is not appropriate for the delivery of most medications.

2. Intravenous Fluids. The device used in supplying intravenous fluids is similar to that used in hypodermoclysis, but the needle is typically placed within a vein running beneath

the skin of the back of the hand or lower arm. It, too, contains salt or sugar water and is essentially limited to supplying fluids and not nutrition, although approximately five hundred calories in sugar can normally be given through an I.V. every 24 hours. Intravenous "lines," as they are frequently referred to, have the added convenience of allowing the administration of many different medications, including antibiotics, narcotics, tranquilizers, sedatives, etc. Thanks to years of observations, studies, and advances in technology, the techniques of supplying intravenous fluids have improved markedly over the years with far fewer complications.

One major problem, however, remains, the resultant lack of mobility. A patient receiving I.V. fluids is essentially tied to the bottle. Methods have been devised to allow a basically healthy individual to get up and around in spite of the I.V., but these methods are seldom appropriate in the setting of a terminally ill patient whose mobility is likely to be highly restricted when on I.V. fluids.

3. Naso-gastric feeding tubes. Naso-gastric (N/G) feeding tubes are thin tubes passed through the nose and down the esophagus into the stomach or further on into the beginning of the intestines. In most patients, placement of the tube is relatively easy and it can remain in place for long periods of time, especially in situations involving an unconscious patient. When patients are conscious, however, the tubes tend to cause discomfort in the nose and throat and may lead to vomiting, bleeding, and ulcerations. It is also common for the tubes to be improperly placed or dislodged by movement of the patient so fluids that are intended to go into the stomach actually end up going into the lungs and causing aspiration (non-infectious) pneumonia, which then often goes on to become infected.

Because of the distress caused in the nose and throat, after a short period of time N/G tubes are normally replaced with a surgical tube if artificial nutrition and hydration is to be continued. (PEG or PEJ discussed below.) Naso-gastric tubes also have the disadvantage of keeping the junction between the stomach and esophagus open and providing a mechanism for fluids from the stomach to find their way up into the lungs by the same mechanism as water tends to run up the sides of a glass. N/G tubes can be used to supply all required nutrients and can also be used to administer medications, but has the disadvantage of not being able to employ solid foods. Unfortunately, the fluids which are normally administered through naso-gastric tubes which are enriched with nutrients to maintain nutrition usually cause diarrhea and/or an over accumulation of body water.

4. Total Parenteral Nutrition (TPN). Total parenteral nutrition is a procedure in which a mix of the total required body nutrients can be given through a vein using a relatively large catheter (thin-walled tube) placed through the skin into a major vein in the center of the chest. The advantage of TPN lies in the fact that unlike I.V. fluids using small arm veins, with TPN the fluid is actually discharged into a large vein which is not irritated by the addition of nutrients to the fluid given. As a result, unlike I.V. fluids which can only be used to maintain hydration, TPN can also be used to maintain nutrition.

It sounds good, but there are many complication when TPN is used besides being quite expensive. Infection is a particularly important problem because when it occurs, it can go straight to the heart, lungs and other important organs in the body.

5. Surgically implanted tubes (PEG,s and PEJ,s). Modern technology now allows surgeons to implant tubes into the stomach (PEG) or the beginning of the intestines (the jejunum -- PEJ) directly through the abdominal wall without requireing general anesthesia. These approaches are fast, simple, and can be undertaken with minimal risk, and are certainly preferable to long term use of either a naso-gastric tube or TPN. Although a major medical advance when dealing with potentially reversible conditions, their use to maintain artificial nutrition and hydration in a terminally ill patient is much more questionable and revolves almost exclusively around issues involving quality of life. Among the potential complications of PEG,s and PEJ,s are local perforation of the stomach or intestines and blockage of the intestinal tract, but more commonly the ill-effects are likely to come from the fluids introduced into the tube, either causing diarrhea or traveling back up the esophagus from which they are aspirated into the lungs.

8.04 Do Terminally Ill Patients Suffer Starvation and Thirst?

All of us have experienced hunger pains and the distress of thirst. Although these are often decreased during times of illness, they still exist and can be remembered as particularly troublesome if the disease process makes normal eating and drinking impossible, as with a bad sore throat. In addition, we have all witnessed movies or actual events on television depicting the horrors of terminal thirst or starvation, but this evidence associating starvation and thirst with suffering is not necessarily applicable in case of the terminally ill patient. In fact, there is overwhelming medical evidence the two are not associated -- that lack of food and fluids does not cause significant suffering in this situation.

The reason for lack of hunger in the terminally ill patient who has stopped nutritional input appears easy to explain and is similar to the reason why people on very low calorie diets do not experience true hunger. In order to avoid the breakdown of fats in the body, there must be an intake of approximately 100 grams (justover three ounces) of carbohydrates (sugars or starches) each day. Because there is such limited storage of carbohydrates in the body, this input must occur on a near daily bases. If this input or carbohydrates is inadequate, once the meager stores in the body are utilized, fats begin to be broken down within the body to produce the required energy.

For reasons involving the biochemistry of metabolism, in the absence of adequate carbohydrates, this process results in the release of certain chemicals called "ketones" into the blood which have a tendency to cause a loss of appetite. Once this occurs, the patient no longer feels hunger.

Although loss of appetite and hunger typically takes three to four days to occur when food intake ceases in a healthy person, most terminally ill patients experience this process -- decreased carbohydrates -> ketone production -> loss of appetite without it being obvious to observers, who just report the final loss of appetite without understanding its basis. [Note: If carbohydrates are given in typical amounts used in I.V. fluids, the 100 gram threshold for preventing ketones is likely to be met and hunger is likely to persist or recur. Thus, patients on I.V. fluids are likely to experience hunger while those without I.V.,s are not.]

The exact reason for the absence of thirst in the terminally ill patient is more difficult to explain than the absence of hunger. In part it may be related to the fact that most terminally ill people are older, and older people are less likely to experience thirst than young people. In addition, it may be explained in part by the fact thirst is normally experienced when the amount of salt in the body is high compared to the amount of water, whereas terminally ill patients are likely to be as depleted of salt as they are of water.

Whatever the cause, what is known is that terminally ill patients who complain of "thirst" are usually complaining more about having a dry mouth than lack of fluids. Thus, relief is not likely to occur as the result of the patient being given fluids either by mouth or I.V., but as the result of effective local care of the mouth -- like sips of water or ice, cleaning of the teeth and mouth, etc. When handled this way, lethargy and sleepiness are likely to result, but basic mental function is normally maintained even in the absence of fluid intake until the very last day or two of life when mental cloudiness is likely to supervene.

Although patients do not seem to suffer from starvation or thirst when artificial sustenance is withheld, it is worth recognizing that withholding artificial sustenance is likely to result in a chnage of terminal event. Those who have forgone artificial sustenance are more likely to exhibit signs of fluid deficit, like dryness of the skin and mucous membranes, poor circulation to the extremities, decreased urinary output, restlessness, muscular irritability, and sleepiness. They may also be more prone to fall when walking, the development of bedsores and problems with blood clots as circulation fails. In contrast, those who receive food and fluids by tube may exhibit the same signs, but are more likely to experience others, like shortness of breath, coughing, choking, nausea, vomiting, cramps, swelling of the extremities, loss of urinary control, and recurrent oral secretions requiring suctioning.

Those who have not received artificial nutrition and hydration are also more likely to appear comfortable, in part because dehydration has an unexplained tendency to cause at least mild euphoria with increased tolerance for pain, and to more peacefully slip into a final comatose state. Death occurring in the absence of fluid therapy frequently involves irregular heart beats, infection, and circulatory collapse as terminal events, all of which tend to be rapid and, ideally, not associated with perceived discomfort by the patient.

In trying to balance the merits of artificial nutrition and hydration in the terminally ill patient, numerous studies have been done comparing the suffering of patients who receive artificial nutrition and hydration by tube with those who do not. Not surprisingly, symptoms varied, but overall those without artificial feeding and hydration fared better, mostly because they suffered less from lung complaints, such as cough and shortness of breath, and from intestinal complaints, such as nausea and diarrhea. Interestingly, those who did not receive supplements were no more likely to complain of hunger, thirst, or dryness of the mouth, the latter being common in both groups of patients with or without artificial fluids being given.

[Note: The author has accumulated over 90 articles from the medical literature overwhelmingly supporting the view that suffering is not relieved in the terminally ill patient by giving artificial nutrition and hydration beyond that which is naturally desired by the patient. Whether artificial nutrition and hydration actually prolongs life is uncertain, and even then, the question remains whether the potential extension of life with its accompanying pain and suffering justifies the disadvantages of feeding tubes and intravenous lines in the end-stages of most terminal illnesses.]

8.05 Considering Artificial Sustenance

A. Benefits of Forsaking

The natural tendency of terminally ill patients to discontinue food and fluid intake produces many beneficial side effects which should be considered when deciding on whether or not to employ artificial nutrition and hydration. Reduced fluid intake means reduced urine output, thereby reducing incontinence (the uncontrolled leaking of urine) and the need for urinary catheterization. It also means reduced fluid in the stomach and intestines, with resultant reduction in vomiting and diarrhea, and reduction of lung secretions which tend to cause cough, shortness of breath, choking, a sensation of drowning or suffocation, and a need for recurrent suctioning of the back of the throat. Reduced fluid also means less fluid swelling (edema) which may be particularly beneficial if the patient experiences headaches or confusion related to swelling of the brain. Lack of food and fluids together cause a build-up of toxins and changes in body chemistry which might normally be considered deleterious, but are an advantage in the terminally ill, for they result in increase in the natural production of endorphins which act like morphine and reduce the need for pain medication. In addition, the production of ketones, break-down products of fat, produces suppression of hunger, while changes in body chemistry add to lethargy and the gradual production of coma -- welcomed end points in the terminally ill.

B. Emotional Aspects

It has been said:

As infants we were given food and drink when we were too helpless to nourish ourselves. Because of this early psychological connection between feeding and loving and the on-going connections between nutritional satisfaction and emotional satisfaction throughout life, it is hard for the family to forsake artificial nutrition and hydration without feeling they are abandoning the patient. Not to provide food and water is as if one has cruelly and for selfish reasons decided against providing basic life-support measures, and to precisely those to whom we owe our own life and well-being. Although few of us may know what it feels like to undergo cardiopulmonary resuscitation or heart transplantation, we all know what it is like to be hungry, or thirsty. How can we wish those experiences on this poor, defenseless person who we profess to love? Is it not true that if there is any way in which the living can stand by those who are not yet dead, it would be through the continued provision of food and drink even when the struggle against disease has been lost? To continue to nourish the life of one who had been defeated in that battle is the best evidence we can offer that we are more than frontrunners, that we are willing to love to the very point of death.

No one is comfortable with the thought a loved one may "die of thirst" or "starve to death." But as noted above, we must not allow ourselves to feel guilt simply because of the terms "thirst" and "starvation." Studies tend to show patients who have the capacity to decide usually refuse artificial feeding when they are near death or severely debilitated with little hope of recovery. They also show when patients are asked about the discontinuation of various forms of medical treatment, most consider the discontinuation of artificial nutrition and hydration to be much the same as discontinuing a respirator or kidney dialysis and more appropriate than discontinuing medications like antibiotics.

C. Societal Aspects

In our society, food carries high symbolic value, representing comfort and nurturance. Feeding is one way we express love and caring. The first thing the mother does for a newborn child is to suckle it, providing food and hydration. When a child is sick, the family,s role is classically to be sure he or she remain fed and receives "lots-of-fluids." Even as adults, we worry when illness causes a loss of appetite or decreased fluid intake. And when we care for others, one thing we all feel comfortable in addressing is the provision of adequate food and fluids for the patient.

Even when we go beyond family, the feeding of the hungry, whether because they are poor or because they are physically unable to feed themselves, is one of the most fundamental of all human relationships. It is the perfect symbol of the fact that we as humans are inescapably social and communal. We cannot live at all unless others are prepared to give us food and water when we need them, and just as we look for help from others in our needs, we look to help others in theirs. Even in third world nations where various tribes go on killing each other decade after decade, the outside world emphasizes the need for provision of nutrition as the primary goal of support.

Given this general feeling of society, that provision of food and fluids is a basic right of all, it is not surprising

families usually become the strongest advocates of artificial nutrition and hydration during terminal illness. A recent study among hospice nurses found seventy-six percent of families were very concerned about weight loss compared with only twenty-six percent of patients. As to the nurses themselves, ninety-five percent felt aggressive nutritional support did more harm than good.

In fact, among hospice nurses it is thought that provision of artificial nutrition and hydration to the terminally ill by medical professionals is primarily a method to support the family which desires that everything possible be done and in disregard to the patient,s desires or best interests. As they perceive the situation, undertaking such provision is a relatively easy, inexpensive way for health care providers to show compassion and concern. To the contrary, many palliative care specialists sarcastically point out that providing artificial sustenance is in fact a way for physicians to avoid the more difficult tasks of dealing with the patient,s existential problems -- they are too busy working with the manipulation of nutrition and fluids to spend their precious time talking to the patient and family.

D. Religious Aspects

From a religious standpoint, the provision of artificial nutrition and hydration to the terminally ill patient is a controversial area, although most denominations seem to be increasingly receptive to the idea that nutrition and hydration may at times be considered unnecessary forms of therapy.

Those religious groups which do not support the discontinuation of nutrition and hydration believe life should be prolonged at all costs and every step toward shortening a life diminishes its value in the collective mind. Advocates of this pro-life position are likely to claim we are morally mandated to provide fluid to all terminally ill patients to prevent "suffering" by painting a gruesome picture of dehydration: a parched, skeletal victim, burning with fever, convulsing, and retching from a dried-out stomach. Although this may be an accurate picture based on studies of healthy people deprived of fluids who commonly complain of headache, abdominal cramps, nausea, vomiting, and dry mouth, it is not what is witnessed in terminally ill patients who suffer natural dehydration as part of the dying process.

On the other side, many religious leaders believe that allowing the dying process to occur without interference is not immoral, and people are not obligated to endure treatments they consider burdensome in order to prolong life. Religious leaders of this philosophy acknowledge that "Nature itself has made provision to render more bearable the moment of death...," [citing the Declaration on Euthanasia, Vatican Congregation for the Doctrine of the Faith, June 26, 1980.] This, in fact, corresponds quite closely to present legal concepts discussed below.

Unfortunately, in addition to these highly competing views common in different religious circles, there is a great deal of public misunderstanding which revolves around a now outdated concept of "ordinary" and "extra-ordinary" care.

Beginning with St. Thomas Aquinas and remaining part of Catholic doctrine into the not too distant past, there was a theory of medical care that in caring for the terminally ill patient it was an obligation of the medical profession to supply "ordinary care," but no obligation to supply "extra-ordinary" care. Under this division, provision of food and fluids were considered basic, ordinary care and was therefore required in all cases. The development of modern medical technology in the last forty years has, however, led to the official abandonment of this approach many years ago as it provided numerous situations in which separating ordinary and extra-ordinary care no longer proved appropriate. Official abandonment by the Church, however, has not erased the concept amongst the public, who continue to refer to this differential as if it were still accepted theological theory. As a result, feeding and providing fluids to sick patients is still routinely evaluated as being "ordinary," and thus equated to a moral necessity.

Even if we were to consider the provision of food and fluid to be a moral necessity, there are numerous arguments against applying this approach to artificial nutrition and hydration. First, while feeding by mouth is ordinary, "artificial feeding," by definition, is not. Second, ordinary feeding by mouth can be refused by the patient by simply not swallowing, this is not true of artificial feeding. Third, ordinary feeding is pleasurable, artificial feeding is not. Fourth, ordinary feeding is not normally associated with risks to the patient, but artificial feeding is. Fifth, ordinary feeding by mouth takes time and is associated with a touching/feeling type of relationship, while artificial feeding is not.

E. Ethical Aspects

Ethical theory related to forsaking of nutrition and hydration in the terminally ill revolves heavily on the concept of autonomy, the right of the individual patient to decide what care he or she wishes to undergo. As stated in the guidelines established by the President,s Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research in its 1983 report, "discontinuing medical hydration is ethically acceptable when, from the patient,s point of view, it is more burdensome than beneficial. Burden or benefit from the patient,s point of view is determined by the decision-maker utilizing the patient,s stated desires or, if the patient,s desires have not been stated, deciding what would be in the patient,s best interest." [Note: This statement of ethics as put forth by the Commission closely parallels the now existing legal stance on the use of artificial sustenance in terminally ill patients. For further considerations of the decision in competent patients, see chapter on voluntary forsaking of sustenance, below.]

In keeping with the Commission,s guidelines, additional ethical commentary can be summarized as accepting the patient,s desires as controlling, and then going on to add that when the patient,s desires are not known, artificial nutrition and hydration in the terminally ill is ethical to prolong life only if the genuine well-being of the patient is being served. If treatment is continued merely based on motives which are outside the expected quality of the life of the individual person, such treatment cannot be considered to be at the service of that individual,s life and should not be undertaken. In such situations, there still exists a duty to make food and fluid available to the patient upon request and a frequent suggestion that food and fluid be left at the bedside as an almost symbolic gesture that food and fluid are still being provided.

Two special ethical considerations should be noted. The first relates to determining a patient,s desires. Artificial sustenance is frequently begun in patients at the request or with the approval of family members when the patient has limited ability to express his or her wishes. Under these circumstances, it is common for the patient to physically remove the tube or to fight to have it removed in such a way that the patient must subsequently be placed in restraints to prevent the repeated removal of the tube. This leads to an ethical dilemma -- should the repeated attempts of a patient to remove a feeding tube be considered a decision on the part of the patient not to have the tube continued? There are, of course, differences of opinion, but most ethicists presently argue that in the absence of any hope the underlying condition will improve, these gestures by the patient should be interpreted as saying "No" to the tube and a legitimate expression of the paptient,s wishes. Even those ethicists who would suggest leaving the tube in would frequently recommend it not be left if this required the use of restraints -- better to go ahead and put in a PEG or PEJ which is more difficult for the patient to dislodge.

The other highly divisive ethical issue related to the provision of artificial sustenance involves patients with progressive dementias, as typified by Alzheimer,s disease. Most patients with dementia eat well until the disease is far advanced, but eventually are unable to maintain adequate nutrition and hydration by mouth. This most commonly occurs when the brain destruction causes an inability to swallow correctly causing the "swallowed" food and fluids to "go down the wrong way," into the lungs and not the stomach. In this situation, interventions, such as placement of a feeding tube, can be anticipated to (1) inflict at least some level of discomfort, (2) fail to improve the underlying progressive dementia, but (3) will prolong life.

Traditionally in this country, but not in Europe, for instance, patients with end-stage dementia who reach this stage of their disease are given artificial nutrition and hydration through surgically implanted feeding tubes. But is this ethical? Again, there is the expected difference of opinion. Many ethicists support the maintenance of the patient,s life through the use of an implanted tube, but others say progressive dementia should be considered a terminal condition similar to incurable cancer. Taking this latter view, a hospice type treatment approach which emphasized maintenance of patient comfort instead of preventing death at all costs would be appropriate, especially if this was a choice previously requested by the patient.

In a much quoted 1984 article on this subject in the New England Journal of Medicine, noted medical ethicist Dr. Bernard Lo stated:

"When demented patients stop eating and cannot be fed by hand, physicians and family need to discuss the goals of care and the benefits and burdens of tube feedings. If feeding problems are temporary, tube or even intravenous feedings are appropriate. Long-term tube feedings are indicated in a patient who has no irreversible life-threatening problems, whose quality of life is acceptable, and whose family wants such feedings. However, tube feedings are not indicated when life-threatening medical problems are irreversible, the quality of life is poor, and the family agrees that the appropriate goal is to provide comfort rather than deliver calories or try to prolong life."

To many ethicists, even fifteen years later this would appear to be an appropriate summation of present thinking on the subject.

 

 

 

F. Legal Aspects

Although there have been few legal cases involving the discontinuation of nutrition and hydration in patients who are close to death, there have been many involving patients who suffered from illnesses which robbed them of any significant quality of life while allowing them to be kept alive for long periods of time with artificial nutrition and hydration. As a result of these cases, the law is now pretty well established, although there is still some variation from state to state. The following summarizes where the law stands in most states, although it may not be the law in the particular state in which any particular patient is being treated.

1. The patient with decision-making capacity has the clear choice of whether he or she wants to be given artificial nutrition and hydration.

2. If a patient with decision-making capacity chooses to refuse artificial nutrition and hydration, this choice must be honored. Failure to do so may make the health care provider legally responsible for damages based on pain, suffering, and additional expenses.

3. A patient has the right to refuse artificial nutrition and hydration in an advance directive even if the state statute would suggest they cannot.

4. If there is a difference of opinion as to whether artificial nutrition and hydration should be undertaken or continued, the patient,s decision should control, not the family,s or the physician,s.

5. Most, but not all states have accepted the concept that it is acceptable to withdraw medical nutrition and hydration when the appropriate decision-maker for the patient determines the burdens of the treatment outweigh the benefits from the patient,s point of view.

6. In most states, a decision by someone other than the patient to use or forsake artificial sustenance should be based on the patient,s wishes, if known. In a minority of states, the preference is to make this decision based on what is thought to be in the patient,s best interest.

7. Even when nursing home regulations appear to require the use of artificial nutrition and hydration in all patients, this does not prevent the patient and/or next of kin from refusing this therapy.

8. In most states, but not all, artificial nutrition and hydration is considered to be a medical treatment and thus may be withheld or withdrawn according to the same procedures and standards as other life-sustaining medical treatments.

9. There is legally no difference between stopping artificial nutrition and hydration and deciding against beginning it.

10. When a patient dies after the discontinuation of a life-sustaining treatment, such as artificial sustenance, the death is considered to result from the underlying disease and not the discontinuation of treatment.

11. Under the theory of "double-intent," [discussed in a separate chapter below] death which results from the discontinuation of artificial sustenance is not considered to be due to an illegal act as long as the intent of the physician and family is to benefit the patient, not to cause the patient,s death. This is true even if the physician and family know it will result in the patient,s death.

[Note: In spite of all these legal concepts, if the family strongly disagrees with a patient,s request that artificial nutrition and hydration be stopped, physicians are unfortunately likely to follow the family,s wishes]

G. Traditional Medical Practice

For reasons which are difficult to determine, many health care professionals go along with the "right to refuse treatment" until it comes to nutrition and hydration. Although the pendulum is swinging back to the natural state of dying without tubes, some physicians and medical commentators continue to espouse the moral need for continued care. Their arguments usually suggest stopping sustenance is different from stopping other medical treatments for the following reasons:

1. Finality. The denial of food and fluids is different than forsaking medical or surgical therapy in that it is "final." At times, we can choose to stop other therapy, like a respirator or antibiotics, and the patient will still live, but stopping food and fluids will always lead to death.

2. Universality. The need for food and fluids is universal. Stopping food and fluid would cause the death of all human beings, while stopping other medical or surgical therapies would only cause the death of a few individuals. Indeed, as recently as the 1940s such medical and surgical therapies were unavailable. Food and fluids are universal human needs; modern medical and surgical therapy are not.

3. Expectations. Few patients form the physician/patient relationship expecting to be dependent on the physician providing technical life-support, but they do expect their health care providers to supply nourishment.

4. Non-therapeutic. Provision of food and water can not be considered medical treatment because so doing will not overcome disease or restore health. Thus nutrition and hydration should be provided as part of a patient,s normal care, even if provision of such care requires medical technology, unless or until the benefits of nutrition and hydration are clearly outweighed by a definite danger or burden, or they are clearly useless in sustaining life.

5. Simplicity. Frequently, artificial nourishment may be provided in a simple, non-invasive manner, particularly in instances where use of a nasogastric tube is adequate. Therefore there is little reason to stop it.

6. Independent cause of death. To withdraw nourishment is to cause death by a means independent of the underlying illness. When one dies because of the withdrawal of other medical interventions, the individual dies because of their underlying disease.

7. Suffering. To withdraw food and fluids produces suffering, as we are all aware from the living of life.

It might be helpful to consider a few other reasons which are not likely to be voiced by the health care provider.

1. Clinician,s lack of knowledge. The provision of nutrition and hydration in terminally ill patients is often initiated because of clinicians, fears that malnutrition and dehydration are painful and engender significant suffering. In addition, physicians frequently provide sustenance because they consider such action ordinary care which expresses compassion and concern, because they want to avoid being contributors to death, and because they perceive the provision of food and fluid as symbolic treatment that averts familial confrontation and condemnation.

2. Convenience. Although it is claimed physicians continue therapy to increase billing and to avoid potential law suits, there is little to support these beliefs. In contrast, convenience and time, two interrelated factors, probably do account for much of medical decision-making to undertake tube feedings. It is convenient and efficient to order an NG tube because nurses can insert the tube, give and monitor the feeding, and replace the tube when necessary. Even placement of a PEG or PEJ is an easy procedure to order and undertake.

3. Lack of Clinical Experience. Probably in part as a result of their lack of experience treating terminally ill patients, surgeons and anesthesiologists are much more likely to employ artificial nutrition and hydration than are general practitioners and internists.

[Note: In spite of the reluctance of many medical practitioners to forsake nutrition and hydration in the terminally ill, several national professional organization have stated it can be medically appropriate to forsake this type of medical care along with other non-comfort care under selected circumstances. These groups include the American College of Physicians, the American Dietetic Association, and the American Medical Association.]

H. Palliative Care Medicine

In contrast to traditional medical providers, health care providers specializing in palliative care of the dying patient are the leading proponents of limiting intake to what the patient desires and takes by mouth. They stress the fact that most patients require very little food and fluids as they approach death, that the patient,s hunger and thirst should determine how much food and fluids are given, and that the family should be discouraged from force-feeding or over-hydrating the patient. They note thirst can usually be relieved by ice chips or a few sips of water, and dehydration, while not producing true thirst, may in fact be beneficial in reducing unwanted body secretions into the lungs and intestinal tract. In addition, dehydration may result in mild loss of kidney function which tends to produce a welcomed type of sedation.

I. Feeding Tubes

In many cases the patient makes the final decision regarding the placement of a feeding tube, but family decision-making is also common. Because the patient is likely to have experienced starvation and thirst but not likely to have much experience with the treatment of terminally ill patients, asking the patient whether artificial feeding should be instituted without explaining the risks and benefits will almost always lead to a "yes" answer, unless the patient is specifically aware of the recent controversy surrounding its use.

When a decision is made to begin artificial sustenance in a conscious patient, it is wise to consider the advisability of using a PEG or PEJ from the beginning, unless the feeding is expected to be of short duration. In close to fifty percent of naso-gastric tube placements, patient attempts to remove the tube resulting in the need for the use of physical restraints, a most undignified way to end one,s life.

8.06 Author,s Opinion

Unless there are specific reasons otherwise, such as the possibility of improvement, once a decision is made to limit care to concern for patient comfort, there is no reason to undertake artificial sustenance. If we are limiting our concerns to providing pleasure and eliminating suffering, whatever the patient desires becomes the appropriate foodstuff to supply. And if the patient is suffering from untreatable nausea or has no desire to eat, nothing may be the most appropriate offering, for there is no need to treat hunger which does not exist.

As discussed fully above, discontinuation of fluids in the terminally ill patient seldom leads to significant distress, and when it does, it is short lasting and easily treated. In the previous chapter we describe some medical considerations and treatments related to the dry mouth which is frequently attributed to "thirst," but which is probably more properly attributed to other factors involved in the dying process. In addition, discomfort from dry mouth can be relieved for one to several hours with sips of the patient,s favorite beverage, ice chips, lip moisteners, cleansing and swabbing of the mouth, use of "viscous lidocaine" (a local anesthetic), a water spray to the mouth, room humidification or sucking on hard candies. Meticulous mouth care, including removal of debris with frequent water and peroxide rinses, may be helpful. Brushing of the gums, teeth, and tongue with a soft toothbrush, if the patient can tolerate it, may also help. To the contrary, artificially loading the body with undesired water serves only to increase breathing problems, usually the most distressing symptoms of the dying process.

8.07 Reaching a Decision

Unfortunately, the decision to institute artificial sustenance often falls on a surrogate decision-maker. Deciding to go ahead when a loved one is unable to decide for himself or herself in the hope of prolonging a life associated with unavoidable suffering can be a most difficult, trying choice. It is not a time for emotions to get in the way of doing what is best for the patient, but it has to be among the most emotional choices one must make in life.

Health care professionals may opt to supply artificial nutrition and hydration almost as a reflex, without fully considering whether they are performing a truly caring act. When this happens, it becomes the duty of the appropriate decision-maker to stand back and make a carefully considered decision. If the artificial sustenance and the technology used to make it possible is more of a burden than a benefit to the patient, a request should be made to the physician to have it stopped.

Hopefully, this chapter will serve to help the decision-maker. Because the author,s personal experience treating terminally ill patients led him to prefer home health care without "tubes," there is a certain risk of bias in what has been said above, as well as in the following summary of thoughts put forth in this chapter:

1. The decision to undertake artificial nutrition and hydration in the end-stage terminally ill patient deserves careful consideration and should not be undertaken "routinely."

2. In years past most patients with terminal illness died at home without food or fluid beyond that which they voluntarily took by mouth. This is still the usual practice in most European countries and under hospice care, but not in American institutions.

3. When a patient is in the end-stages of dying from cancer, there is no evidence artificial nutrition and hydration prolongs life. This is not necessarily true of other diseases in which it may extend longevity.

4. For many reasons, some unexplained, the absence of food and fluids does not produce significant hunger or thirst in the late stages of terminal illness.

5. When a patient is in the end-stages of dying from cancer, there is no evidence artificial nutrition and hydration prevents suffering. In fact, it may add to unpleasant symptoms experienced by the patient.

6. The use of artificial nutrition and hydration may counteract some of the lethargy often experienced by the dying patient. This effect may be beneficial, but may also increase the burden of living in the very end-stage of the illness.

7. The only common complaint of patients who are not given artificial nutrition and hydration is dryness of the mouth. This can be effectively treated with local measures. It cannot be effectively treated with artificial hydration.

8. Many emotional, social, religious, legal and ethical issues revolve around the question of forsaking artificial nutrition and hydration in the terminally ill. In recent years there has been a tendency for all of these disciplines to accept a concept in which (A) the choice of a competent patient prevails and (B) when the patient does not have the capacity to make personal decisions, a surrogate decision is made based on the relative benefits and burdens artificial sustenance would bring to the patient.

9. Patients who have the capacity to decide usually refuse artificial feeding when they are near death or severely debilitated with no hope of meaningful recovery.

10. The final decision regarding the institution or continuation of artificial nutrition and hydration is best made between the patient, family and physician after an open discussion of the potential benefits and burdens.

11. Providing food and fluids orally upon request can be an effective means of fulfilling a patient,s wishes. Some families feel better if they continue to give small amounts of foods which are meaningful within their family tradition.

12. The patient with dementia who has never voiced his or her wishes about artificial sustenance can present a most difficult social/ethical problem when oral feeding is no longer possible. Those who must make decisions are wise to consider a benefits/burden test limited to concerns of the patient. In this situation, standard therapy in America is to place a PEG or PEJ. In Europe, artificial sustenance is generally not undertaken.

13. If a decision is made not to use artificial sustenance, most ethicists suggest leaving food and fluids at the bedside to be given to the patient on request.


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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