Euthanasia: The Dutch Experience Antonios Liolios, MD
The topic of euthanasia always elicits strong reactions among practitioners. Several discussions and presentations at the European Society of Intensive Care Medicine 18th Annual Congress examined the topic. Presenters began with a discussion of the evolution and definition of euthanasia. Specifically, as the human society evolved from a survival-oriented accumulation of primates to a higher, more complex form of human interaction, the ideals of caring, altruism, and compassion have emerged. Humans are the only species that consistently takes care of their sick, the very young or very old, or those simply incapable of self-care. These ideals have never been easy to apply. The productive part of the population bearing the burden of social care are, at times, reluctant to carry the extra weight, when resources are scarce.
Today, as health care funding is becoming progressively more limited and the mean age of the population continues to rise, resource allocation is becoming increasingly problematic. It is estimated that in 2011, the eldest of the 77 million babies born during the "baby boom" years of 1946 to1964, with their life expectancy of 83 years, will turn 65. Furthermore, the older population in 2030 is projected to be twice as large as in 2000, reaching approximately 20% of the total US population.
The futility of caring for the gravely ill or incurable person is cited by some as a cause of the rising cost of healthcare. The issue becomes more complicated when seriously ill persons request to die. Many philosophical, theological, and sociological ramifications impact the fulfillment of these requests. As life is considered sacred in most religions and societies, this wish is never easily granted.
Is It Euthanasia or Murder?
The term "euthanasia" comes from the Greek words "eu," meaning good, and "thanasia," meaning death. Hence "euthanasia" means a good death. The custom has been practiced sporadically for thousands of years. The definition of euthanasia is "the intentional cause of a person's death motivated by the desire to promote this person's best interest, using the gentlest means available." From these 2 perspectives, euthanasia is clearly different from murder, which only serves the murderer and is often cruel and harsh. "Gentle means" usually entail lack of pain along with respect, dignity, peace, and comfort. The process usually requires the active participation of a physician who will facilitate death.
The most tragic and generalized application of the term euthanasia occurred during the Nazi era and World War II. Thousands of sick patients or patients with congenital diseases were "euthanized" in the name of financial savings, racial purity, and nationalism, with the voluntary assistance of many physicians. By definition, this practice was murder: It lacked the consent of the person and had nothing to do with the current concept of euthanasia.
Nevertheless, from the end of WWII until recently, the Nazi atrocities in the name of euthanasia have precluded discussion of the issue even for the most hopelessly sick or suffering patients. In 2001, euthanasia and assisted suicide were legalized in The Netherlands under certain conditions. Specifically, the patient should request euthanasia voluntarily, the condition should be hopeless, and the patient should be experiencing unbearable suffering. Additionally, another physician should concur with the decision and the event should be reported to the coroner and to a special commission. A Dutch study published in 2003 examined the attitudes of patients and physicians toward euthanasia and assisted suicide. The study concluded that the demand for physician-assisted death had not increased during the period of 1995 to 2001 compared with that of 1990 to 1995.
In the Critical Care Setting
The above stated conditions for and definitions of euthanasia limit its applicability in critical care where the patient is often comatose, lethargic, or confused. Dying patients in the ICU have only recently begun to receive considerable attention. The definition of a good death is subject to interpretation. Most agree that a good death is more than a lack of pain and agony--it entails dignity and a peaceful environment in the presence of family and friends and possibly a conscious state, which would allow communication. In addition, a good death should not stress or emotionally scar those around the patient. These concepts were discussed in a retrospective study of Mularski and coworkers. After interviewing 94 family members of 38 ICU decedents, they concluded that supporting dignity, respect, peace, and maximizing patient control increases the quality of dying in the ICU. In another survey study involving 340 seriously ill patients, 332 recently bereaved family members, 361 physicians, and 429 other health care providers, it was determined that aside from management of pain and symptoms, patient-physician communication, preparation for death, and a sense of completion had a positive impact on the quality of death.
The European perspective on death was examined in the ETHICUS study, a multinational study examining end-of-life practices in European ICUs. It showed that although limiting life-sustaining therapy was common in Europe, active facilitation of death was rare. However, of particular concern was that a gray zone separated therapies aiming at pain relief and those that hastened death.
Dying is never easy, and many related problems arise in the terminally ill. Among these are nonresponsive patients with no advance directives or those who feel guilty, have suffering family members, or are uncertain about prognosis or quality of life after survival. The physician can use questionable strategies, such as high doses of opiates and sedatives, prolonged intubation, and minimal charting, but none of these promote the art of achieving death with dignity. Effective communication and open discussion with family appears to be a very valuable tool when dealing with end-of-life issues. In a cross-sectional study in 4 ICUs in Seattle by McDonagh and colleagues, discussions with families were audiotaped and the families were subsequently surveyed about their satisfaction with communication. It was shown that the more time family members spent talking (and physicians listening), the more the communication was perceived as being effective (average family speaking time, 29%; physician, 71%).
Several other practical measures may facilitate the process of dying and decrease family stress: The patient should be placed in a room with privacy for the mourning family if possible; all measures, procedures, and possible anticipated reactions should be explained to the family in detail; the physician should stay near the patient and remove life-sustaining equipment himself; comfort should be a priority, and death should not be hastened if comfort has been achieved; if necessary, higher doses of drugs should be used, even if this would hasten death; and all interventions should be documented in detail and explained.
The issue of terminal sedation differs from euthanasia or assisted suicide in that terminal sedation uses high-dose sedatives and analgesics to alleviate pain and discomfort but not to hasten death. Death may occur, but it is not the primary intention. The difference between the 2 approaches is probably reflected in the attitudes of German physicians practicing palliative medicine as reported by Muller-Busch and coworkers. In this study, 90% of physicians were opposed to euthanasia but 94% considered terminal sedation to be acceptable.
When dealing with a terminally ill patient, physicians should be aware that they may be treating not only the patient but also the family members. In all decisions regarding therapeutic measures and interventions, the physician needs to take this fact into consideration, thus avoiding adverse effects on the family members' well-being in the long term. A sense of guilt or pity for the deceased (especially when a stressful death has been witnessed) may haunt the family for a long time. Furthermore, physicians should examine whether, sometimes, sedation is being used to satisfy the unconscious need of the physician to discontinue the relationship to the dying person.
Comatose patients may require less anesthesia or sedation than anticipated during terminal weaning. In a prospective study, 31 adult patients undergoing withdrawal of mechanical ventilation were followed. Comfort level was evaluated by electroencephalogram, the Bizek Agitation Scale, and the COMFORT scale. These patients remained comfortable and required little or no analgesia or sedation. However, it should be noted that they were comatose or had altered mental status. On the other hand, patients with advanced, irreversible illness may become progressively more difficult to manage as death approaches. Pain, agitation, delirium, dyspnea, and existential and psychological distress are progressively more difficult to control as they become refractory to standard therapy.[12,13]
In a recent survey study from The Netherlands, 52% of physicians had used terminal sedation, primarily to alleviate severe pain (51% of patients), agitation (38%), and dyspnea (38%). An interesting aspect of this study was that hastening death was partly the intention of the physician in 47% of cases and the explicit intention in 17% of cases, which contradicts the concept of terminal sedation.
In a 6-year, retrospective review done in an academic nursing home, the mean total dose for terminal sedation required for symptom control when life-sustaining mechanical ventilation on a chronic ventilator unit was being withdrawn were 115 mg of morphine and 14 mg diazepam. In another study involving non-brain-dead patients undergoing withdrawal, the average dose of morphine was 6.3 mg/hour. Morphine or fentanyl was given to control agonal or labored breathing (59%) and tachypnea (34%). Symptom control was achieved in 68% of cases.
The doctrine of double effect allows the physician to administer high doses of opioids and sedatives to relieve suffering but not to cause death. As intention is the factor separating this approach from euthanasia, informed consent and detailed discussion with the family should precede pursuing this method.
Palliative care has evolved into a multidisciplinary system that, aside from addressing the needs of the terminally ill, facilitates physician-family interaction and educates health care providers. While the end point in palliative care is mainly sedation for symptom control, in terminal sedation the outcome is death.
Euthanasia and physician-assisted death are concepts that carry an enormous negative historic burden, as they commonly refer to the atrocities of the Nazi era. Nevertheless, society and the medical community have gradually realized that in certain cases of intractable suffering, properly defined euthanasia may be reconsidered. In euthanasia, the issues of compassion and patient autonomy contradict religious dogma and the fear of covert murder. Three countries today (United States, The Netherlands, and Belgium) have permitted euthanasia in one form or another under strict regulations. The United Kingdom is also strongly considering the issue, although current opposition is strong.[17,18]
The Dutch were the first to legalize euthanasia, and they have tried to ensure flawless application of the procedure: A patient with a hopeless disease should request it, and 2 physicians should concur. However, although Dutch law requires reporting of cases of euthanasia, the notification rate was still low (approximately 54% for 2001).
Terminal sedation is essentially the addition of sedation to a dying patient. Although it is defined differently from euthanasia and appears more "natural," it has been referred as "crypto-euthanasia." As stated, almost 1 out of every 2 physicians who have practiced terminal sedation had, more or less, the goal of hastening death in their minds.
It is impossible to make generalized recommendations or statements on the issue of euthanasia. Cultural, religious, and ethnic backgrounds play important roles when death is considered, and universal measures are guaranteed to contradict the beliefs of some group. As the value of individual autonomy continues to increase in society, it seems likely that euthanasia will be adapted by more countries in the future.
One point deserves great caution: financial concerns must not be permitted to masquerade as legitimate reasons to legalize euthanasia. If society becomes less vigilant on this issue, we may risk the death of the weak, the elderly, and the unprotected. Reporting of euthanasia cases in The Netherlands is low, despite the efforts to monitor euthanasia closely. One is reluctant to think what implications the legalization of euthanasia may have in a more lenient environment.
Furthermore, the patient's request for euthanasia may result from anxiety, depression, or other mental problems, and these possibilities should be taken into account as the patient may change his or her mind (up to13% of patients changed their minds in a recent Dutch survey study[20,21]). Some patients in The Netherlands request euthanasia because they are "tired of living" even if they lack a severe disease. These requests are not granted. Euthanasia has also been considered in children, and a "suicide pill" has recently been a subject of debate.
Euthanasia today has limited applicability in the ICU. Terminal sedation is a concept that, if legalized, may help comfort the agony and distress of the last hours of the gravely ill.
Are the Dutch showing us the way of the future?
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