In the course of an illness, patients and health care agents will need to decide which treatments they want to pursue. The right to decide has been well acknowledged by the courts and affirmed by ethics through the recognition of the autonomy principle. The patient or agent may refuse a treatment or request the cessation of therapy. Treatment decisions are made according to the goals of care, which vary with the progression of the disease. At times, cure will be the ultimate goal; however, in advanced disease, avoidance of premature death, maintenance or improvement in function, relief of suffering, maintenance of quality of life, and help to maintain control or promote a good death will become more realistic goals. It is not easy to determine the appropriate goals. When is it time for palliation? Did we reach the end-of-life phase? Is there still a place for active treatment? Patients and family will need guidance in their decision-making process. Information by the medical team will help to determine what can be done. Patients and agents will decide, once adequately informed, what their preferences are, and set their limits of care according to their personal values and goals. Other members of the team or family and friends can be helpful. Good communication among the participants involved can help to resolve very difficult decisions. Among the decisions that may arise in advanced disease are the following: Withholding and Withdrawal of Treatment Do Not Resuscitate (DNR) Artificial Hydration and Nutrition Sedation in the Imminently Dying Each of these issues is controversial. Although much discussion has taken place, there is no clear consensus. Withholding and Withdrawal of Treatment When treatment is considered to be ineffective, disproportionate or of no value to the patient's quality of life, it may be withdrawn or withheld. Withdrawal of treatment is defined as the ending of treatment that is medically futile in promoting an eventual cure or a possible control of the disease. Withholding of a treatment occurs when this type of treatment is not provided at all. Both practices refer to the proportionality of treatment under the circumstances: it is no longer reasonable or beneficial to fight the disease with aggressive medical interventions, since it cannot be controlled. They are both applicable in the context of life-sustaining therapies, in contrast to lifesaving therapies. The mere prolongation of life-sustaining treatments is not perceived as a justifiable goal. By withdrawing or withholding a therapy, one stops or never starts a treatment that is no longer effective in achieving its goal, thus no longer resisting the process of death-in-progress, previously delayed by artificial means. Although withholding and withdrawal of therapies have been described mainly in situations related to technical interventions (ventilator, hemodialysis), they can also be applied by extension to chemotherapy, artificial hydration and nutrition as long as the aim of these therapies is to prolong life beyond expectation, to delay death. If it is generally accepted that when a treatment is futile (has no benefits) it should not be offered or given, the difficulty is to define futility. Futility has been variously defined as "a treatment that does not fulfill its purpose or offers almost no benefits, a treatment with highly improbable or no real chance of achieving a desirable end." What type of benefits should be included in the definition (medical, quality of life), what chances of success are acceptable, remain open to discussion. Advances in medicine, by defining the probability of success of certain therapies, help to better define the quantitative aspect of futility. This represents only one of the multifaceted aspects of this controversial concept. An evaluation in the broader context of decision-making is needed to reach an adequate decision. Treatment withholding or withdrawing when a treatment is hopeless or futile is generally accepted by both the medical and the legal community. At times, health care professionals may be unable to comply with such a demand. They might have to transfer the care of their patients to other willing providers, consult their institution's ethics committee, or look to the courts for guidance. Dealing with these difficult issues requires a great deal of sensitivity and consideration for the values of all parties involved. In any case, it is important to discuss the goals of care and to make sure that the plan of care is well understood in order to avoid any misinterpretation. In that regard, withholding and withdrawal of treatment need to be clearly distinguished from physician-assisted suicide and euthanasia. Do-Not-Resuscitate (DNR) The impressive technique of resuscitation introduced in the 60’s for victims of sudden cardiac or respiratory arrest has become a common practice in hospitalized patients, regardless of the underlying disease. Unless a DNR order is specified, patients who suffer a cardiopulmonary arrest will be "coded." DNR is a direct application of the right of the patient to refuse an intervention. Although well-acknowledged, many questions regarding the current use of DNR discussions and orders remain. Because resuscitation is often perceived as a question of "life and death" with dramatic consequences, it often tends to be poorly discussed or interpreted, not addressed, or addressed too late. DNR orders have been developed to encourage open discussion and patient participation in their care. The discussion focuses on a specific issue: whether to resuscitate in the case of a cardiac or respiratory arrest. As in the case of any procedure or treatment, a DNR decision needs to be informed [explanations of the procedure, benefits, and harms (chances of success or complications)], and consented (signed). Written documentation is required, mostly in the form of a signed document by the patient or the surrogate/proxy. It can be revoked. CPR and Advanced Illness In contrast to popular belief, resuscitation is not an easy procedure or one with a high success rate. It is now known that the survival rate of CPR is about 15% under the best circumstances (good health status and CPR started early after the arrest). The survival rate is related to the underlying disease. Almost no patient with advanced cancer survives to leave the hospital: It is almost never successful in patients with chronic debilitating illnesses (1%-4%). CPR and Level of Care The DNR order is only one element of the care plan. DNR does not preclude the administration of other therapies. A patient with a DNR order can still continue intravenous fluids, antibiotics or any other indicated treatments. In each case, adequate information on the various options should be discussed with the patient or decision-maker. The discussion about resuscitation should be placed in the broader context of life-prolonging therapies. Artificial Hydration and Nutrition Withholding or withdrawing artificial hydration or nutrition is difficult to address with the patient or the family because nutrition has such a high symbolic value (it seems to mean caring, and withdrawal is seen as starvation), and because of numerous misperceptions. Withholding nutrition can be perceived as neglect, abandonment or hastening death. An open discussion about the advantages and side effects of artificial nutrition will help to correct the misconceptions and reassure families in their decision process. The discourse is rarely neutral and should take into account emotions, passions, religious beliefs, and the overall goals of care. Artificial hydration and nutrition have been considered as treatment by the courts and, as such, are governed by the same legal and ethical medical principles as the withholding and withdrawal of other treatments. In this way, information about nutrition and hydration should be part of a larger discussion about life-prolonging therapies. As with any treatment, nutrition and hydration have indications and contraindications. The difficulty is to recognize the appropriateness of these therapies. In advanced cancer or other debilitating illnesses, some patients benefit subjectively from artificial nutrition or hydration and others do not. Improvement in quality of life or survival has not been proven. In certain cases, it becomes clearly detrimental since it can contribute to increased swelling, increased pulmonary or other secretions, and worsen the shortness of breath. Each case is unique and deserves an individual approach. Sedation in the Imminently Dying ("Terminal Sedation") Good palliative medicine can alleviate symptoms for most patients with advanced disease. At the end of life, sedation has been suggested as a means to relieve difficult symptoms not responding to sound palliative care. Terminal sedation is defined as the action of deliberately inducing unconsciousness without deliberately causing death, in order to relieve intractable symptoms. The treatment is considered for a "refractory symptom," when all other means have failed and a patient is believed to be imminently dying. The prevalence of terminal sedation is unknown; a literature survey shows a frequency ranging from 5% to 52%. The use of this technique is not without controversy. When is a symptom considered "refractory" (a symptom that cannot be otherwise satisfactorily controlled)? Does this term only apply to physical symptoms or include existential and psychological distress? How imminent should death be? What increases in the dosage of analgesics are consistent with an intent to relieve pain? The acceptability of sedation to terminally ill patients, physicians, families, other health care providers and society has not been demonstrated. If there is no consensus on the indications for sedation, there is also none concerning the pharmacologic agents to use to induce sedation. Benzodiazepines and barbiturates are the most widely used drugs but the list also includes opioids, neuroleptics, and other psychotropic drugs, or a combination of these agents. Whatever the agent selected, dose titration to achieve relief is required before continuing maintenance therapy at the lowest dosage possible. Sedation is mostly continuous but can be intermittent in certain circumstances. The ethical justification for sedation is based on the principle of double effect. It applies to situations where a desirable effect (good) is linked to an undesirable effect (bad). To be morally acceptable, such an action must comply with the following requirements: the treatment proposed must be beneficial or at least neutral only the good effect should be intended and must be achieved directly the beneficial result must outweigh the untoward outcome The principle's application relies on one's personal and professional integrity and intention. Sedation is typically not a goal of opioid therapy. It should be considered an exceptional therapeutic measure with specific indications. Considering the importance of its consequences and potential for misunderstandings, sedation should be a multidisciplinary decision based on an open discussion with the patient or patient's proxy. Support to family and friends is needed at all times. The use of sedation should be continually reviewed and documented in the medical record. Sedation, as a mean to relieve intractable symptoms, possibly to the point of hastening death, has been acknowledged as justifiable by various medical societies, bioethics, and more recently, by the United States Supreme Court. To be legally acceptable, sedation should be carried out in a manner consistent with the intent of relieving suffering. The action should reflect the purpose. Sedation in the imminently dying recognizes the right of patients to good palliative care. Although some have considered sedation in the imminently dying as a form of euthanasia "in disguise," the two are quite different. They differ in their intent: death is the unintended, although foreseen result in sedation, as opposed to the intended result in PAS and euthanasia. They also differ in action: a sedative dose is not a killing dose. PAS and euthanasia imply recognition not only of the right to be relieved of suffering, but also of the right to die.

Department of Pain Medicine and Palliative Care Beth Israel Medical Center, New York City ©2005 Continuum Health Partners, Inc. www.stoppain.org/palliative_care