CHAPTER 12. TERMINAL SEDATION

 

12.01 Terminal Sedation; Introduction

12.02 Frequency of Need

12.03 Symptoms for Which Employed

12.04 Medications Used

12.05 Usual Period of Sedation

12.06 Patient Choice/AMD

12.07 Ethics of Terminal Sedation

12.08 Legal Aspects of Terminal Sedation

12.09 Clinical Implications of Terminal Sedation

12.10 Clinical Use of Sedation When Discontinuing Life-Support

12.11 Terminal Sedation Versus Euthanasia

12.01 Terminal Sedation; Introduction

This book repeatedly emphasizes that in the vast majority of patients, pain and other symptoms can be relieved by proper palliative care without producing undue sedation, but this is not always the case. On some occasions, symptoms cannot be relieved in such a way as to permit the patient to maintain active communication with the world. When this happens and persistent symptoms remain unrelieved, something more has to be done.

One approach is to accept the use of symptom-relieving drugs in spite of their heavy sedative effects or, at times, even with the intent of producing a continuous state of sleep until death occurs. This process is referred to as "terminal sedation," although some suggest it would more properly be called "sedation in the imminently dying," because it is almost always undertaken at the very end-stage of a terminal illness.

Usually, the decision to employ terminal sedation is reached only after the patient,s clinical course evolves into such a state. As described by one palliative care specialist:

The intent of the team was to reduce the patient,s perception of suffering until the end thus allowing the patient to have a good quality of life in his own home surrounded by his relatives. The result that we sought, but which was not always possible, was the elimination of pain and other symptoms while keeping the patient alert until the onset of metabolic and biochemical phenomena that alter sensory capacities. In some situation, the progressive increase of the dosage and the combining of different drugs to control symptoms did end by sedating the patient. Death occurred some time later, in a quiescent patient who reacted to external stimuli only if provoked.

All patients were cared for at home until death. We did not consider the possibility of hospitalization for the patients with unendurable symptoms because, according to our experience, there are no differences in symptom control between the home and hospital setting. Moreover, the quality of life is much better for patients cared for at home than for those in the hospital.

At other times a more planned approach is taken. The suffering patient, along with his or her caretakers, decide collectively that trying to maintain the patient in a state of wakefulness is so dominated by suffering that the patient would reasonably prefer to sleep until death intervenes. In this situation, terminal sedation can be said to be voluntarily initiated at a particular time, as opposed to the first situation in which it gradually comes into being as part of the process of treating terminal illness.

It can be a difficult decision. As viewed from the side of the physician specializing in palliative care, terminal sedation would have to be characterized as a strategy of last resort for relief of otherwise unrelievable suffering. In deciding a symptom is refractory to regular treatment, the clinician should decide further invasive and noninvasive interventions are (1) incapable of providing adequate relief, (2) associated with excessive and intolerable acute or chronic morbidity, or (3) unlikely to provide relief within a tolerable time frame. Those who argue against terminal sedation are likely to argue that, "the moment of death is certainly a profound spiritual, psychological, and philosophical event. Complete obliteration of consciousness at this time may therefore be a serious disservice to some patients." Both sides are worth consideration, but in the end, it is the patient,s choice.

12.02 Frequency of Need

Because most chronically ill patients with terminal illnesses are receiving medications which are at least somewhat sedative at the time of their death and most are asleep in the hour or more before death, it is hard to know how many should actually be considered to undergo terminal sedation. Palliative care experts tend to believe the number in which unavoidable and intolerable pain requires terminal sedation is very small, but this number is probably limited to those in whom terminal sedation is specifically planned. In contrast, many traditional medical reports suggest close to half of all terminally ill patients die in a state of sedation in part as relief for terminal suffering.

Perhaps it would be fair to estimate from the literature that one patient in four purposely receives medications to help them sleep through the terminal event, but that is high in the author,s experience.

12.03 Symptoms for Which Employed

The three common symptoms requiring terminal sedation are shortness of breath, delirium, and unrelieved pain, with a fourth, vomiting, also occasionally requiring its use. Other psychological symptoms, like anxiety, depression and existential distress are also occasionally listed as a reason for terminal sedation, but they are relatively uncommon.

Delirium is more likely to require terminal sedation in an institutional setting than at home, where patients are usually better able to maintain their orientation and where their agitation, confusion, hallucinations, and wanderings are less likely to cause trouble with other patients and caregivers.

12.04 Medications Used

When terminal sedation is the result of gradually increasing use of palliative medications, narcotics like morphine are likely to be a major component of the drug regimen used. When terminal sedation is undertaken by mutual decision, the major drugs used are likely to be true sleeping medications, like barbiturates, or tranquilizers similar to valium. On rare occasions, true anesthetics may be used to induce a deep state of sleep.

12.05 Usual Period of Sedation

Terminal sedation is usually undertaken at home, for patients in whom it is appropriate seldom require medical surveillance or intervention except to maintain their sleep state. Because they are asleep they do not eat or drink and because there is no intent to try to reach a time when they can be awakened, there is no justification for using artificial nutrition and hydration. As a result, life expectancy is typically limited to approximately ten days, although most reports suggest death most commonly occurs within two or three days.

12.06 Patient Choice/AMD

Clearly it is preferable for the patient to make the choice to undergo terminal sedation and not to leave this most difficult decision for surrogates after the patient losses decision-making capacity. In an ideal world, the patient should always be asked if they would want terminal sedation if required early in the course of the disease. This will avoid any misinterpreting of the patient,s wishes which might occur later on when they patient is likely to be confused. In addition, asking early when symptoms are well controlled will make it easy for surrogate decision-makers to so decide without feeling they need to clear it with the patient, a process which would be seen as telling the patient they are about to die.

One way to accomplish this goal is to bring up the question of terminal sedation at a general discussion of advance medical directives, DNR orders, the use of artificial nutrition and hydration, preference for home or hospital care, the naming of an agent for decision-making, etc. Because patients who decide in advance they would want to be sedated rather than suffer through the last days of life have been found to maintain that choice, a request for terminal sedation if needed in an advance directive should be honored if the patient subsequently losses the ability to make medical decisions.

12.07 Ethics of Terminal Sedation

Use of terminal sedation is ethically based on the twin concepts of autonomy and the principle of double-effect. Under the concept of autonomy, the patient has a right to choose between various medical approaches to relieve his or her pain and suffering provided the approaches are legal and provided they are made aware of the potential risks and benefits to each individual approach. As terminal sedation is both legal and an accepted approach to the relief of terminal distress, it is a choice which should be given every patient facing this possibility at a time when they have the ability to make a decision.

Unfortunately, patients are often not asked what they would want before they lose the ability to make a proper decision. When this happens, others (surrogates) must make the decision for the patient. Although this is more difficult, it is certainly acceptable for such decisions to be made by surrogates, although there is frequently a delay until the clinical course proves the necessity to all those involved in the decision-making process.

Ethically, the use of sedating medications in this setting meets all of the four conditions for the principle of double-effect therapy discussed previously:

* the treatment is at least neutral (if not beneficial), but may have untoward as well as beneficial consequences.

* The clinical intent is the beneficial outcome (relief of suffering), but the foreseen untoward outcome (e.g. potentially foreshortened survival) may be unavoidable.

* The untoward outcome is not necessary to achieve the desired beneficial outcome (relief of suffering does not require death).

* Adequate relief of unendurable symptoms is an appropriately compelling reason to place the patient at risk of the untoward outcome.

12.08 Legal Aspects of Terminal Sedation

Sedation of the terminally ill as therapy for otherwise unrelievable symptoms has been routinely held legally to fall within the reaches of double-effect therapy, and is therefore within the law. When terminal sedation is undertaken in conjunction with the stopping of nutrition and hydration, it is usually the stopping of sustenance which is questioned legally, as discussed in the chapters on nutrition and hydration. [Chapters 8 & 13.]

In contrast, when sedation is given along with stopping life-support systems such as a respirator the concurrent use of sedation is frequently questioned legally because the medication also suppresses breathing. In this situation many ethicists and legal scholars believe giving sedatives to the person in whom the respirator is being removed is taking away their last chance to survive. Normally, when patients are on a respirator they are "weaned off," a little at a time to give the body a chance to learn to breath on its own again. If we just stop the respirator without weaning and in addition give medications which stop this relearning, critics say it is like killing the patient.

To a large extent, the legal status of giving sedation to a patient coming off a respirator is dependent on the exact circumstances. The most common situation in which this becomes a question is when a patient who is paralyzed and known to be dependent of the respirator to maintain breathing directs it be removed and requests to be sedated when it is done. In spite of the objections noted above, courts routinely accept the use of the sedative to relieve anxiety even though in a sense they help insure death will occur.

In another common situation, the patient is known to have a terminal illness which will cause death soon after removal of the respirator even if death is not immediate. In this situation, courts are almost sure to accept the use of sedatives if the patient is alert and can direct that the medications be given, but are likely to be reluctant to do so if the patient,s wishes are unknown.

Of even greater trouble is the situation in which the patient has no proven terminal illness and has never expressed his or her wishes, the decision being made by a surrogate based on a belief stopping the respirator is in the patient,s best interest. In this situation, the court is very likely to require the patient at least be given a chance to survive by not employing sedatives.

12.09 Clinical Implications of Terminal Sedation

Use of terminal sedation should always be offered directly to the patient and not to the family if the patient is capable of making a medical decision. It is often appropriate to offer its use as an empathic acknowledgment of the severity of the patient,s suffering even at a time when the patient is expected to refuse primarily to reassure the patient it can be done upon request if desired in the future. At the same time, the offer should not be made unless the family and caregivers are willing to go along if the patient accepts the offer. If the patient declines but suggests the offer might be accepted in the future, it is wise to find out what would lead the patient to desire sedation in case the patient is no longer able to make decisions for themselves in the future.

Use of terminal sedation is likely to require:

1. The patient,s condition to be determined to be truly terminal, with no further hope for remission and with death considered likely to occur within hours or days;

2. The family members and the patient to clearly understand the seriousness of the condition and the risks and benefits of using terminal sedation;

3. That after appropriate counseling, an informed consent be obtained to write a "do not resuscitate" order;

4. All family members be in full agreement with the intended therapy without reservation; and

5. Someone from the family or among close associates be present at the bedside at all times to assist the nursing staff in the continuous observation and monitoring of the patient.

In an extensive paper on the use of terminal sedation, it was reported: (1) all patients died; (2) All experienced improved relief from long-standing and increasingly severe symptoms near death; (3) All were permitted to have control in the final days and hours of their lives, and (4) all maintained personal dignity and autonomy with the assistance of the immediate family, the physician, and the nursing staff.

12.10 Clinical Use of Sedation When Discontinuing Life-Support

Withdrawal of life-sustaining treatment such as kidney dialysis, blood transfusions, antibiotics, and medications regulating blood pressure frequently occurs in the hospital without any resultant pain or discomfort to the patient. At times, however, as with the discontinuation of a respirator, the patient may experience severe air hunger and anxiety when therapy is stopped. At these times, it is important that active measures be taken to ensure the patient is kept comfortable.

Unfortunately, many physicians are reluctant or even unwilling to give sufficient sedation when stopping a respirator. It this is their personal belief, it must be accepted and a decision made to either accept this approach or to transfer care of the patient. If, however, it is out of fear that it is unaccepted, the consensus among ethicists, physicians, and the courts that it is morally permissible to provide this palliation should be pointed out.

When any question of survival exists and the patient is competent to make decisions, the problem can usually be handled simply by telling the patient the sedation will probably destroy any chance of survival and giving the patient the option to accept or reject it. When the patient cannot make decisions and there is a chance of survival, the question becomes much more complicated and sedation should probably be avoided until and unless the patient begins to show symptoms of distress, at which time short acting drugs can be given intravenously.

12.11 Terminal Sedation Versus Euthanasia

It is unfortunate in a way that euthanasia advocates maintain there is no difference between a doctor's intention in sedating dying patients and in deliberately ending patients' lives. Although their intent is to further extend some of the concepts we accept regarding terminal sedation to euthanasia, many antagonists to any physician aid-in-dying use their arguments to also fight the acceptance of terminal sedation. Certainly, terminal sedation can and is used as a covert form of euthanasia by a few doctors who believe in euthanasia, but there is no evidence this approach is common or true for most doctors who see it as the only remaining way to legally relieve the pain their ethics requires them to treat.

In fact, while situations in which terminal sedation is employed are frequently those which suggest the appropriateness of euthanasia, this is not an appropriate argument. Most situations in which terminal sedation is used involves only a few days of therapy, which is generally very successful in relieving the patient,s suffering, thus eliminating any need for euthanasia or assisted suicide. Certainly most on both sides of the euthanasia argument would agree it is better for the patient to continue to receive palliative care based on medicine,s duty to relieve pain and suffering than to open up the possibility of improper use of euthanasia.

[Note: The author does not mean by this to imply he is against euthanasia in all situations, but only that its appropriate use, if any, is not in situations in which short term sedation for a few days can serve a similar purpose with far less attention and with fewer legal, moral, and ethical concerns.]


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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