Ethical Challenges in the Care of Patients with Serious Illness

Abstract

The approach to management of patients with advanced disease and serious illness has been strongly influenced by advances in science and technology, the increasing role of ethics in clinical practice, and the recognition of new rights and social changes. At the present time, decision making is modulated by ethical and legal considerations. One of the challenges of clinical practice is to maintain the delicate balance between the technical aspects and the humanistic aspects of care. For the resolution of this challenge, this article proposes an ethical and legal framework that considers the goals of care and respects the basic values of autonomy, beneficence, and justice. Ethical and legal principles complement sound medical practice but should never replace it. At all times, clarification of the medical situation, good communication, and information about state of the art treatment proposals are essential. In the context of advanced illness, the most prominent issues relate to decision making, justice, and research.

Ethics, Advanced Disease, Sedation in Terminal Illness, Clinical Decision Making, Research, Palliative Care

During the past few decades, advances in science and technology, recognition of ethics as a foundation for clinical practice, acknowledgment of new rights, and social changes related to health care have strongly influenced the approach to management of patients with serious medical illnesses, especially those with advanced disease. At the bedside and in the clinic, ethical and legal considerations constantly inform decision making. The need to address these considerations while striving to match technical aspects of care with more humanistic aspects has become a fundamental challenge in the practice of medicine [1–3].

Bioethics involves practical reasoning about individual patients in a manner that considers their values, hopes, and beliefs [4]. There are many approaches to the resolution of difficult ethical questions [5]. The most commonly used is organized around basic principles: autonomy, beneficence, nonmaleficence, and justice [4,6]. These principles must be balanced through case-by-case analyses. None is absolute, and they may compete in the moral resolution of any issue.

The basic ethical principles have generated other important principles of care. For example, the “principle of double effect,” which is central to many decisions in palliative care, is derived from the principle of nonmaleficence. It is considered when obligations or values conflict and cannot be realized simultaneously [6]. According to double effect, there is a moral difference between the intended effects of a person's action and the unintentional, but foreseen, effects of the action. The desirable effect (good) is linked to an undesirable effect (bad); the good effect is direct and intended, whereas the foreseen undesirable effect is indirect and not intended. The principle of double effect has been widely used in moral writings and is particularly useful in end-of-life decision making (see below).

Ethical analysis subsumes numerous issues. To provide a broad overview, it is useful to divide these into three areas: clinical decision making (including end-of-life issues), justice issues (access to care), and research issues.

Clinical Decision Making

With modern medicine offering countless new technologies and treatments, healthcare decision making can become a difficult and complex task. The best treatment decisions have been described by medical ethicists as a “combination of medical, emotional, aesthetic, religious, philosophical, social, interpersonal and personal judgments”[4]. Given the complexity involved, patients must take an active role by bringing their histories, values, philosophies, and emotional needs to the decision-making process. Numerous issues inform the complex situations encountered in clinical setting.

Goals of Care

To optimize decision making, the goals of care must be defined. Is it time to pursue curative therapies, focus on prolonging life, or palliate symptoms without concern for disease-modifying interventions? Withholding or withdrawing disease-modifying treatment may be an acceptable alternative in advanced disease but less so in the early phase of an incurable disease. The determination of goals must consider the stage of the disease (prognosis) and related uncertainty; the possible treatment options; and the personal values, hopes, and understanding of the patient or decision maker. The goals of care are dynamic, not static. They can change rapidly and are sometimes contradictory. They should be realistic. Continual reassessment of goals is essential to ensure quality of care in accordance with patient wishes.

Confusion about goals can derive in part from belief in a long-standing medical dichotomy that is becoming obsolete: Medical care can either cure disease or alleviate suffering. With the increasing prevalence of chronic illness and the advent of palliative medicine over the last three decades, this distinction is no longer defensible. The “cure” and the “care” systems are not mutually exclusive but rather overlap [7,8]. In reality, numerous goals are possible, and more than one can be pursued within the context of the current realities [9]. These may include avoidance of premature death, maintenance or improvement in function, relief of suffering, maintenance of quality of life and control, and preparation for a good death. Those goals may each be valid; each needs to be discussed according to individual circumstances.

In clarifying goals, healthcare professionals have the difficult task of determining the benefits or harms of procedures or treatments. This is a direct application of the proportionality principle. The proportionality principle states that “a medical treatment is ethically mandatory to the extent that it is likely to confer greater benefits than burdens upon the patient”[4,10]. Finding the appropriate therapy and avoiding futile treatment are overriding goals of medicine. This task is based on an understanding of futility, informed consent, and decision making in the setting of impaired patient judgment.

Futility

The medical profession has no obligation to provide futile or unnecessary treatment. This long-acknowledged principle takes new significance in the current context of health care. Futility is a complex, ambiguous, controversial, and subjective concept. Terms used to describe it are diverse; it has been equivalent to “impossible,” “rare,” “unusual,” “hopeless,” “inappropriate,” “nonbeneficial,” “unreasonable,” or “extraordinary.” Many definitions of medical futility have been proposed [11–13]. A treatment is futile if it does not conform to the patient's goals, to legitimate goals of medical practice, or to accepted community standards; it may also be futile if it is ineffective most of time.

A broader definition of futility takes into consideration the purpose of the therapy, its chances of success (quantitative aspect), and the balance of burdens and benefits (qualitative aspect). A treatment is probably not futile if there is “a real chance of achieving some desirable end, whether that end is cure of the patient, patient comfort, patient dignity, or even comfort to the family”[11]. The concept of futility refers to “effectiveness” in achieving a goal and overall “beneficence.” The nature of the desirable goals or benefits remains controversial, however, and can be perceived differently by healthcare providers, patients, and families.

Considering the ambiguity inherent in the concept of futility, it should be applied with caution and should be seen as a boundary to measure the limits of care and defining goals. The concept is better approached by using the terms “appropriate” or “proportionate.” These terms address the real issue in futility, namely the “appropriateness” of the therapy.

The discussion surrounding futility also should focus more on the motives underlying demands for “futile” or “disproportionate” treatments. Many factors related to medical uncertainty, including anguish or denial from the patient or family, fear of death or fear of the unknown, and the healthcare professionals' attitude of “doing everything that is possible,” can all be sources of misperception or misunderstanding. Any of these factors may generate disagreement between the parties involved.

Futility is rarely unequivocal or absolute: It is always in relation to what and to whom. Better communication will most often resolve the potential or real conflicts or misinterpretations [13]. Examples of situations in which questions about futility may be raised include resuscitation in a terminally ill patient, life-sustaining interventions in a patient in a persistent vegetative state, and use of total parenteral nutrition in terminal illness.

Informed Consent

The idea of informed consent has its origin in law (right to self-determination), in ethics (principle of autonomy), and in contemporary understanding of medicine about the nature of the doctor-patient relationship. Informed consent implies that decisions about medical care are to be made in a collaborative manner between patient and physician. In routine practice, informed consent must be obtained before a treatment can be administrated [14]. This requirement implies that the patient or proxy receives appropriate information (disclosure), can make a well-considered decision (is informed), and subsequently can express that consent (consent). The information provided has to be understood and sufficient for the patient to make the best decision possible under the circumstances. To be valid, consent should be given by a competent person and obtained without coercion [15].

Consent is embedded in the doctor-patient relationship and like other ethical issues is usually resolved through good communication. The use of technical language, focus on medical uncertainties, and the failure to adapt to patient limitations, fears, and culture all can modify doctor-patient communication. Skillful physician communication is essential to the practice of informed consent.

Truth telling is critical to the patient's ability to make reasonable medical decisions. Choices made on the basis of emotion and/or insufficient information can compromise informed consent. When the decision to limit information has been made, it should be acknowledged; this generally is the exception and not the rule. The legally accepted standard for information is based on conventional professional practice and what any reasonable person would want to know in the same circumstances [15].

For a patient to be adequately informed, information must be given about the nature and purpose of the proposed treatment or procedure, its risks and benefits, and any available alternatives [15]. “Risk” is the element of information most emphasized in law. The risks communicated must be consistent with the standard of disclosure and take into account the nature of the risk, its magnitude, and likelihood that it will happen in the near term. Serious and frequent risks need to be disclosed; remote risks do not need to be disclosed, unless important and grave.

To be valid, consent to care must be given by a competent patient or designated person. Commonly, the concept of capacity refers to the capability of a person to perform a specific task at a certain time. In the context of decision making, the task is to decide and communicate this decision. The determination of capacity is a matter of clinical judgment, and there is no consensus on a set of criteria for its evaluation [15,16]. Most argue that capacity requires the ability to understand the information given or the ability to evaluate the options in accordance with the patient's own values and an ability to communicate choices. Although distinct from an assessment of capacity (emphasis on reasoning), mental status evaluation is often used as a screening tool (emphasis on orientation and clear thinking). Concretely, in his or her determination of capacity, the examining physician should assess whether the person understands the condition for which the treatment is proposed, understands the nature and purpose of the treatment, understands the risks involved in undergoing the treatment, understands the risks involved in not undergoing the treatment, and understands whether or not his or her ability to consent is affected by his or her condition.

Capacity may fluctuate over time, and it is important to remember that consent is specific to a particular decision and warrants constant revaluation. Capacity may be influenced by the quantity and quality of information transmitted, type of illness, symptoms and other sources of distress, medication, and many situational and environmental factors. The impact of these factors should be given special attention in the evaluation of capacity. A declaration of incapacity can be done by a formal legal statement but usually is done by a simple evaluation of the primary physician. Consultation by an expert psychiatrist may be needed for more complex cases.

When a patient is determined to lack capacity to decide, the evaluation that justifies this determination should be recorded in the chart. Responsible healthcare providers should be made aware and become familiar with the person who will make healthcare decisions for the person.

Decision Making for the Incompetent

If the patient lacks capacity, someone must be designated to make decisions on the patient's behalf [15,16]. This person can be a “guardian” if appointed by the court (rarely the case for terminally ill patients), a “healthcare agent” designated by written proxy appointed through advance care planning (specifically a living will or durable power of attorney for health care), or a “surrogate”(if no previous appointment, an agent is chosen from eligible individuals in a manner that varies with state laws).

Decisions made by third parties must conform to the “best interest” standard or the “substituted judgment” standard [15]. In the best interest standard, the decision is made in accordance with what is seen as most beneficial for the patient. This is a direct application of the principle of beneficence and proportionality: maximize benefit and avoid harm. The substituted judgment standard aims to implement the subjective preferences of the patient. It takes into consideration the patient's past behavior, statements, or choices. Depending on state law, the level of evidence required to state that the patient had a specific preference may be more or less strict and vary according to the type of decision made (e.g., higher standard for withdrawal of nutrition). Substituted judgment may be preferable but is applicable only when patients have expressed their wishes. This criterion is applied to the case of advance directives.

Advance Directives

Advance directives are oral or written instructions specifying the wishes of a person concerning medical treatment in anticipation of future incapacity [17]. They may also provide for designation of a healthcare agent to make decisions under the same circumstances. Advance directives can take different forms, including personal letters and medical directives.

The most common types of advance directive are the living will and the durable power of attorney for health care (the person given the power of attorney is known as the healthcare proxy). These directives can be general or specific. A living will is a legal document that specifies the treatments that would be acceptable or unacceptable to a patient in case of incapacity. Usually, it takes the form of a directive to limit life-sustaining treatment in the face of a life-threatening illness. Durable power of attorney is a document appointing a healthcare agent or proxy to make decisions according to the incapacitated patient's preference.

With very few exceptions, living wills and laws appointing a healthcare proxy are accepted in most states [18]. For the most part, they are statutory documents created by state legislatures. They also constitute advisory documents and, for that reason, can act as evidence of patient's expressed wishes and be binding beyond the state borders. Physicians following directives in living wills are granted immunity against eventual prosecution.

Withholding/Withdrawing Therapy

When treatment is considered to be medically futile, it may be withheld or withdrawn [10,19]. Withholding occurs when a treatment is not provided. Withdrawing is defined as ending treatment that has no demonstrated value. Both practices refer to the proportionality of treatment. For example, it is no longer reasonable or beneficial to fight the disease with aggressive medical interventions when the disease cannot be controlled. Although healthcare professionals often believe there is a distinction between withholding and withdrawal—there may be a tacit belief that once a treatment is started, it cannot be stopped—this assumption has no ethical, legal, or medical basis [21]. All states in the United States have statutes on issues related to withholding or withdrawing of life-sustaining treatment [20], and many institutions have drafted policies addressing these issues.

Although the withholding and withdrawing of therapies has been described mainly in situations related to technical interventions (e.g., ventilator support, hemodialysis), they also can 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. In this regard, withholding and withdrawal of treatment must be clearly distinguished from physician-assisted suicide (PAS) and euthanasia (see below).

Do-Not-Resuscitate (DNR) Order

The medical, ethical, and legal issues involved in resuscitation have been extensively discussed in the literature [22–24]. Physicians have the obligation to clarify patients' wishes concerning resuscitation, but there are numerous problems in communication and implementation of the DNR order. The lack of focus on goals of care, poor medical training in communication, residual uncertainties about the success rate of DNR, and misinterpretation of futility all contribute to these difficulties.

Cardiopulmonary resuscitation was originally developed as a closed-chest massage for victims of sudden cardiac or respiratory arrest. The overall survival rate averages 15% under the best circumstances (good health status and resuscitation started within 5 minutes of arrest) [25]. Survival is related to the underlying illness; it is almost never successful in patients with chronic debilitating illnesses (1% to 4%) [26].

The DNR order must be distinguished from other aspects of care offered near the end of life. A patient who has elected a DNR designation can still continue parenteral nutrition and can be treated aggressively for pneumonia or any other condition. These other issues warrant an open discussion with the patient, who must be informed about the various options for treatment. The discussion about resuscitation should be placed into the broader context of life-prolonging therapies. This will prevent a sense of abandonment, which can be implicit in DNR discussions.

Artificial Hydration and Nutrition

The question of withholding or withdrawing artificial hydration or nutrition is often difficult to address with the patient and family because nutrition has such a high symbolic value. Withholding food can be perceived as neglect, abandonment, or hastening death.

An open discussion about the misperceptions, advantages, and concerns associated with artificial nutrition help the patient and family in the decision-making process. With few exceptions, patients with incurable neoplastic disease do not benefit from artificial nutrition [27,28]. It also has been documented that, in certain circumstances, artificial fluids and nutrition may worsen edema, ascites, pulmonary and other secretions, and dyspnea [29,30]. In case law, artificial nutrition and hydration has been considered a treatment and, as such, governed by the same legal and ethical principles of withholding or withdrawal [31,32].

Discussion surrounding nutrition and hydration must take into account the emotions and religious beliefs attached to this issue. Although the discourse is rarely neutral, it can strive to be explanatory and place these interventions into the context of the overall goals of care.

Ventilator Withdrawal

The withdrawal of ventilator support from a patient is clinically and ethically challenging for patients, family, and members of the healthcare team. The uncertainty of the outcome, as well as the dramatic events surrounding the procedure, contributes to the challenge, especially in the case of immediate extubation [33]. The technique for ventilator removal should be addressed with the patient and family, when possible. Terminal weaning to assess the patient's comfort during the procedure, followed by aggressive interventions to prevent symptoms such as breathlessness and anxiety, are essential [34]. It is ethical and legal to use a combination of opioid and anxiolytic therapies to treat these symptoms.

Sedation in Terminal Illness

Good palliative medicine can alleviate the suffering caused by pain and other symptoms in most cases [35–39]. When suffering cannot be managed at the end of life, sedation is an option. Sedation at the end of life may be controversial, however, and possibly unacceptable to some patients, families, and healthcare providers [35,40].

Although the definition of “terminal sedation” has been debated [41,42], most experts in palliative care defined it as a clinical intervention to induce unconsciousness as a mean to relieve symptoms that cannot be otherwise satisfactorily controlled in patients who are perceived to be near death [40,41, 43]. It is considered an exceptional therapeutic measure with specific indications intended to alleviate suffering in the imminently dying.

Although it must be acknowledged that sedation for intractable symptoms could possibly accelerate the dying process, the principle of double effect applies and the approach has been accepted directly by various medical societies and ethicists [3,44–46] and indirectly by the U.S. Supreme Court [48]. There is little disagreement among palliative care professionals about the necessity of using sedation to achieve symptom control in some dying patients. However, variability in the use of terminal sedation highlights the uncertainty surrounding this practice [37,40,48–50].

Some have considered sedation in the imminently dying as a form of “euthanasia in disguise”[51]. This reasoning fails to note the fundamental differences between the two practices [42,52]. They differ in their intent: Death is the unintended, although foreseen, result in sedation, as opposed to the intended result in assisted suicide and euthanasia. They also differ in action: A sedative dose is not a killing dose. The option of sedation recognizes the right to be relieved of suffering, not the right to die. To be legally acceptable, sedation should be carried out in a manner consistent with the intent of alleviating suffering. The action should reflect the purpose.

The literature shows a lack of consensus with regard to medications, dosages, and routes used to induce sedation [40,41]. Benzodiazepines and barbiturates, or a combination of these agents, are the most widely used drugs, but the approach has also been implemented using opioids, neuroleptics, ketamine, propofol, and others. Whatever the agent selected, dose titration to achieve relief is required before continuing maintenance therapy at the lowest dosage possible.

Because of the serious implications of terminal sedation, its implementation should follow guidelines based on compassion, consideration, and trust [53]. The offer of sedation as a therapeutic option may be perceived as a sign of disease severity and suffering. Sedation should be implemented only after the medical situation has been specified, a thorough discussion with the patient and family has taken place, consent has been obtained, and the goals of care have been clearly established. Once sedation has been activated, ongoing information should be provided to family and staff, questions should be answered, and ethical and legal implications should be clarified [53].

PAS and Euthanasia

The debate on PAS and euthanasia has been fraught with difficulty because of the use of ambiguous and confusing terms [54–57]. PAS is best defined as “aiding or helping to bring about death for compassionate reasons”[58]. This definition implies that the intention is clear (death of the patient) and the performing agent is the patient; the accessory agent (providing the means) is the physician and the motive is usually compassion. Although there have been many definitions of euthanasia, or more precisely many categories (active, passive, voluntary, involuntary), it is now well accepted that euthanasia means to “bring or give death for compassionate reasons”[58,59]. In this case the intention is similarly clear (death of the patient), the performing agent is the physician or third party, and the motive is usually compassion.

Euthanasia and PAS have been the subject of intense debate for centuries [57,60–63]. The current debate is modulated by the acceptance of withholding and withdrawing life-sustaining therapies and the need to set limits on their use. Other influences include the self-determination movement, the promotion of choice in decision making at the end of life, and changes in social values.

In the clinical setting, a request for PAS or euthanasia should be taken seriously. It is important to clarify the request, assess the underlying motives, reemphasize the commitment to symptom control and provision of palliative care, and discuss alternatives.

Although the patient's request for PAS can be broadly interpreted as a cry for help, each person has a set of personal reasons for the desire to hasten death. Unrelieved or unrelievable pain may not be the major or sole reason for requests for physician-assisted death [54,64–66]. In a Dutch study, unrelieved pain was the sole reason for euthanasia requests in 5% of the cases, was part of the problem in 40%, and was not reported at all in the remaining cases [55]. Instead, depression, unrelieved psychosocial distress, loss of dignity, loss of control, other quality of life issues, and perceived burden on the family were the most common justifications [54,64]. Other studies also highlight the importance of depression [67–69]. Physicians, patients, and the public find PAS and euthanasia more acceptable for patients in persistent pain than those who wish to spare their families [67].

The debate on euthanasia generally has focused on the principle of autonomy, the distinction between killing and letting die, the relief of suffering and the “slippery slope” argument [58,70–73]. Each of these considerations may be framed to support or oppose euthanasia.

Assisted suicide or euthanasia implies the right to be relieved from pain and suffering, as well as the right to die. For many, it is seen as the extrapolation of the principle of autonomy: One can choose the moment and means of one's death. The debate struggles with the appropriateness of limits to autonomy [74,75]. The observation that palliative interventions can lead some patients to change their minds about assisted suicide [76] raises fundamental questions about the reality of autonomy when patients (and sometimes physicians) are unsure about the potential for further palliative care, which may relieve suffering without the necessity of death.

Advocates of euthanasia and PAS may draw comparisons with the withholding or withdrawal of treatment, neglecting the distinction between killing and letting die [75,77,78]. This is difficult to justify. Although killing and letting die have the same result (e.g., the death of the patient), they are quite different in their intent. Death is the unplanned but foreseen result in withholding and withdrawal of treatment, as opposed to the intended effect in euthanasia and PAS. This is a direct application of the principle of double effect.

The potential for abuse of euthanasia and PAS is expressed by those opposed to these practices [75,77,79,80]. Evidence for abuse of euthanasia may be found in Dutch data, which include 0.8% of deaths without explicit and repeated requests from the patient (in half of these cases there may have been previous discussions with the patient about such measures ) [81]. Data from the United States have shown that 19% of critical care nurses had engaged in some form of euthanasia or PAS, at times without physician supervision or outside the hospital [82]. These observations also raise the slippery slope argument [70,79,80]. If PAS or euthanasia becomes common practice, it may not be possible to limit these practices to terminal illness or to those capable of providing fully informed consent. In a society that prioritizes cost control, there is even a concern that policy makers or healthcare professionals would be tempted to shorten a lengthy incurable illness [83].

Over the last two decades, there has been progress in the legal acknowledgment of patients' rights at the end of life. There is no constitutionally guaranteed right to PAS or euthanasia, and therefore no constitutional right to die [84–86]. The right to refuse, to withhold, and to withdraw a treatment, however, is well established and represents a legal application of the right to self-determination [84]. The U.S. Supreme Court acknowledges a right to pain control and relief of suffering [47]. The use of analgesics, even if this might hasten death, is considered a standard of good medical practice and not subject to liability if applied in good faith. Conversely, courts have recognized that improper pain management is a breach of good medical practice and is unacceptable [85–87].

Justice Issues

Most Americans will experience a protracted life-threatening illness with a slow decline or unpredictable terminal course. The need to develop healthcare resources to meet changing needs is critical. One such need is for access to optimal palliative care at the end of life. Although hospices and palliative care programs have emerged to address this need, only 15% of all dying patients and 25% to 35% of patients with cancer die in hospice programs. Most referrals to hospice are made very late in the course of terminal illness [88], and there are yet very few hospital-based palliative care programs. Moreover, there is substantial evidence that undertreatment of pain and other symptoms continues to be a profound problem in the United States [89,90].

Many reasons are proffered to explain the limited access to palliative care at the end of life [91]. Frequently, neither the public nor the healthcare providers acknowledge the importance of end-of-life care. It is often introduced late in the disease and has little impact. Clinicians receive no formal training in palliative medicine and end-of-life care, lack skills in communication and assessment of the goals of care, and have attitudes and fears that may be barriers to the care of the dying [92]. Patients' fears, cultural beliefs, denial, or lack of awareness about prognosis also may interfere with the willingness to be referred to hospice or pursue palliative care.

Although there is growing support for access to palliative care, particularly at the end of life, there is still much to do. In a time of cost control, limited resources, and the highly technical practice of medicine, society is moving slowly to introduce palliative care in the healthcare system. There are numerous challenges in integrating hospice and palliative care and in earmarking the funds necessary to optimize treatment and support specialists.

Research in the Seriously Ill Patient

The last set of ethical challenges relates to research. Research in advanced illness generates intense ethical debate. For some, the use of patients as “depersonalized” experimental subjects, the problematic nature of consent, and other issues have contributed to an abiding concern about research in this vulnerable population, which includes those with pain associated with advanced medical illness [93]. For others, the need to document practices, promote good palliative care as evidence based, and expand the scientific basis of this care are valid reasons to pursue research in these patients [94].

Patients' vulnerability represents probably the most important factor. A prerequisite to research, as well as any treatment, is informed consent. In the context of serious illness, particularly when associated with unrelieved pain, patients' understanding and competence may be altered [95,96].

The poor performance status of many medically ill patients is often invoked to deny enrollment in different trials and research protocols. Although such an attitude may conform to the proportionality or beneficence principle, too much emphasis on this aspect of medical status may prove to be detrimental over time because it limits the scope of research in a manner that may be excessive.

The use of placebo in palliative care research also is considered controversial, especially in pain research. The Guidelines of the National Council for Hospice and Specialist Palliative Care Services on research in palliative care specify that “giving a placebo is not justified if there is a therapy known to be more effective than a placebo”[97]. But what if there is no known effective therapy or if need there is to demonstrate the effectiveness of a therapy? Placebo trials can be ethical if a placebo does not replace standard therapy, patients know that they be receiving a placebo, there exists uncertainty as to the merits of the treatments being tested in the trial, and patients have access to therapy should distress increase [98]. Review of research protocols by ethics committees constitutes a warranty of respect for ethical principles and due process.

Research in palliative care has been proven to be beneficial to participating patients, as it has for other patients [99]. It would be unfortunate to jeopardize research for patients with serious illness without careful consideration of the benefits and burdens associated both with the withholding of the option to participate and the granting of this option.

Conclusion

A mature society will develop effective means for caring for its seriously ill members. Respect for the unique nature of each patient constitutes the essence of ethics in medicine. The challenge of ethics is to provide an intellectual and pragmatic framework for pursuing the values of autonomy, beneficence, and justice.