Getting Doctors to Listen: Ethics and Outcomes Data in Context (Hastings Center Studies in Ethics se

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Pediatrics Feb;95 2: Ethical issues in conducting migrant farmworker studies.

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American Journal of Public Health ; Fraser N, Honneth A. Reducing childhood obesity through policy change: Health Affairs ;29 3: Frohlich KL, Potvin L. The population approach and vulnerable populations. American Journal of Public Health ;98 2: Racial and ethnic disparities in diagnosis and treatment: A review of the evidence and a consideration of cause. Confronting Racial and Ethnic Disparities in Healthcare. Institute of Medicine Journal of Medical Ethics ; The National Academies Press Israel B, et al.

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Milbank Quarterly ;76 3: Marmot MG, Bell R. Action on Health Disparities in the United States: Health Affairs ;21 2: Disadvantage, inequality, and social policy. Mill JS On Liberty. On Liberty and Other Essays. Cambridge University Press , p. Murtagh L, Ludwig DS. State intervention in life-threatening childhood obesity. Nuffield Council on Bioethics. Nuffield Council on Bioethics Organisation for Economic Cooperation and Development Obesity update Financial penalties for the unhealthy? Ethical guidelines for holding employees responsible for their health.

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Public Health Ethics 2 2: Woolf SH, Braveman P. Where health disparities begin: Health Affairs ;30 Relationships hold the key to trustworthy and productive translational science: Clinical Translational Science ;6: Justice and the Politics of Difference. Princeton University Press A direct comparison of research decision-making capacity: Schizophrenia Research ; 99 Conducting ethical research in pediatrics: Lessons from Havasupi Tribe v. Arizona State University Board of Regents: The Benchmarks of Ethical Research. Journal of Infectious Disease.

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Annals of Emergency Medicine Jun;37 6: Rationing critical care beds: Luxury primary care, academic medical centers, and the erosion of science and professional ethics. Should everyone have equal access to organ transplantation? An argument in favor. A philosophical approach to rationing. The Medical Journal of Australia. Student Issues Ardagh M. Furthermore, the principles at stake in this debate also underlie medicine's responsibilities on other issues and the physician's duty to provide care based on clinical judgment, evidence, and ethics. Control over the manner and timing of a person's death has not been and should not be a goal of medicine.

However, through high-quality care, effective communication, compassionate support, and the right resources, physicians can help patients control many aspects of how they live out life's last chapter. We all will die. How we die—and live at the end of life—is important, with implications for individuals, their families, and society. How we are cared for at the end of life matters.

The groundbreaking report Approaching Death: Although the cultural norm of fighting disease aggressively is the right approach in many cases, the emphasis by medicine, as well as society, on intervention and cure sometimes comes at the expense of good end-of-life care. Many of us have concerns or apprehensions about how we will die. Indeed, some patients receive unwanted care at the end of life, whereas others do not receive the care they need 4—6.

Medicine and society still struggle to get it right for all patients. Improving Quality and Honoring Individual Preferences Near the End of Life found that challenges remain in delivering quality end-of-life care to a growing and diverse elderly population, especially regarding access to care, communication barriers, time pressures, and care coordination 7.

Inadequate reimbursement and other disincentives also create barriers to palliative and hospice care. Wide agreement exists that hospice and palliative care may ease apprehension about the dying process. Access to state-of-the-art symptom control remains limited for all dying patients. Of particular concern, evidence of ethnic and racial disparities in access, outcomes, and communication is increasing 5 , 6.

Many patients fear they will not receive appropriate end-of-life care when they need it. Others are concerned about being a financial, physical, or other burden on their family, losing autonomy or control, or being placed in a long-term care facility. Some are alone or lonely; loneliness has a mortality risk similar to that of cigarette smoking, yet its health implications are underappreciated Many persons approaching death are clinically depressed or have other psychiatric comorbid conditions, and some contemplate suicide 17 , This desire fluctuates over time 19 , 20 and may be related to inadequate symptom management.

Medicine can and should ameliorate many of these problems; some, however, are outside the scope or goals of medicine and should be addressed in other ways. As challenges in providing palliative and hospice care continue, a few jurisdictions have legalized physician-assisted suicide see the Glossary for definitions and the Appendix Table for U. The ACP recognizes the range of views, depth of feeling, and complexity of the issue of physician-assisted suicide. The issue also has been considered every few years in the American College of Physicians Ethics Manual , including the current edition 9.

Physician-assisted suicide is medical help with a patient's intentional act to end his or her own life for example, an individual taking a lethal dose of medication prescribed by a physician for that purpose. It is ethically, legally, and clinically different from patient refusal of life-sustaining treatment through the withdrawal or withholding of treatment. Physician-assisted suicide also differs from euthanasia, an act in which a physician intentionally terminates the life of a patient such as by lethal injection , the purpose of which is to relieve pain or other suffering 8.

Dictionaries define suicide as intentionally ending one's own life.

Despite cultural and historical connotations, the term is neither disparaging nor a judgment. Terms for physician-assisted suicide, such as aid in dying, medical aid in dying, physician-assisted death, and hastened death, lump categories of action together, obscuring the ethics of what is at stake and making meaningful debate difficult; therefore, clarity of language is important.

Although suicide and attempted suicide have been decriminalized in the United States, assisting a suicide remains a statutory offense in most states. Euthanasia is illegal everywhere in the United States. In New Mexico, a lower-court decision authorized physician-assisted suicide, but it was struck down; like all appellate courts, the New Mexico Supreme Court ruled that there is no right to physician-assisted suicide. Elsewhere in the world, in , the Parliament of the United Kingdom voted down a physician-assisted suicide bill, to , and Canada legalized both physician-assisted suicide and euthanasia.

In , the Parliament of South Australia rejected a bill on euthanasia. Physician-assisted suicide and euthanasia are legal in the Netherlands, Belgium, and Luxembourg; euthanasia is legal in Colombia; and Switzerland has decriminalized assisted suicide. Physicians have duties to patients based on the ethical principles of beneficence acting in the patient's best interest , nonmaleficence avoiding or minimizing harm , respect for patient autonomy, and promotion of fairness and social justice 9.

The intent is to avoid or withdraw treatment that the patient considers unduly burdensome and inconsistent with his or her health goals and preferences. Death follows naturally after the refusal, due to the underlying disease 9. Ethical arguments in support of physician-assisted suicide highlight the principle of respect for patient autonomy and a broad interpretation of a physician's duty to relieve suffering.

The decision to intentionally end one's life is regarded as intensely private and therefore should not be prohibited Seeking physician-assisted suicide is most frequently associated with concerns about loss of autonomy and control, decreasing ability to participate in enjoyable activities, and loss of dignity, rather than pain or other symptoms 21 , For persons who seek this type of control, palliative and hospice care are not the issue—they often are already receiving those services. In Oregon, the state with the most experience, persons have obtained prescriptions for lethal doses of medications under the law since ; died after taking the medication.

More recent justifications present physician-assisted suicide as a personal choice, avoiding discussion of important medical ethics considerations Proponents of physician-assisted suicide view it as an act of compassion that respects patient choice and fulfills an obligation of nonabandonment In support of legalization, they also argue that some patients receiving a lethal prescription ultimately do not use it.

In addition, some maintain that physician-assisted suicide already occurs where it is illegal 23 , so legalization would result in standardization, transparency, and monitoring. Opponents maintain that the profession's most consistent ethical traditions emphasize care and comfort and that physicians should not participate in intentionally ending a person's life Physician-assisted suicide requires physicians to breach specific prohibitions as well as the general duties of beneficence and nonmaleficence. Such breaches are viewed as inconsistent with the physician's role as healer and comforter Pronouncements against physician-assisted suicide date back to Hippocrates.

Opponents agree that patient autonomy is critical and must be respected but recognize that it is not absolute and must be balanced with other ethical principles 9 , Only by such a balance of ethical principles can physicians fulfill their duties, including those in more everyday encounters, such as when a physician advises against tests requested by a patient that are not medically indicated, declines to write illegal prescriptions, or breaches confidentiality to protect public health.

It also undergirds the duty that physicians not engage in futile care for example, care based on requests for nonindicated cardiopulmonary resuscitation or end-of-life treatment of brain-dead patients under an expansive view of patient autonomy. Death certificate requirements under physician-assisted suicide laws ask physicians to list the cause of death as the underlying illness, not the new pathology caused by ingestion of a lethal dose of medicine 24 , which seems inconsistent with the physician's duty of honesty.

Moreover, although individual physicians may decline to participate, conscientious objection to physician-assisted suicide does not address the fundamental ethical objections to it. The suffering of dying patients may be great; it is caused by somatic symptoms, such as pain and nausea; psychological conditions, such as depression and anxiety; interpersonal suffering due to dependency or unresolved conflict; or existential suffering based in hopelessness, indignity, or the belief that one's life has ended in a biographical sense but has not yet ended biologically. Just as medicine cannot eliminate death, medicine cannot relieve all human suffering; attempting to do so ultimately leads to bad medical care Good medicine demands compassion for the dying, but compassion also needs reason Both proponents and opponents wish to alleviate suffering of dying patients, and physicians have an ethical duty to provide competent palliative and hospice care 9.

Balancing respect for patient autonomy against other ethical principles reflects arguments about the nature of the patient—physician relationship, physicians' duties, and the role of the medical profession in society. Legalization of physician-assisted suicide also raises social justice issues. Society and the medical profession have duties to safeguard the patient—physician relationship and human dignity.

These duties apply especially to the most vulnerable members of society: Some individuals might view themselves as unproductive or burdensome and, on that basis, as candidates for assisted suicide, especially if a physician raises it or validates a request. Although a recent study did not find vulnerable groups being pressured to accept physician-assisted suicide, it did raise questions about a lack of data on complications and on how many physicians may have assisted without reporting Vulnerable communities and individuals raise strong concerns that legalization leads to attitudinal changes, subtle biases about quality of life, and judgments that some lives are not worth living 32 , National disability groups are opposed to physician-assisted suicide 32 , One article reported various opinions among focus group participants Finally, advocating for physician-assisted suicide where there is no general right to health care and access to hospice and palliative care services is limited, especially in an era of health care cost containment, is ironic 8.

The ACP's main concerns in this debate are ethical ones. The patient—physician relationship is inherently unequal. Physicians have specialized medical knowledge, training, experience, and prescribing powers that patients do not. Illness makes patients vulnerable including physicians who are patients [ 36 , 37 ]. Patients disrobe, are examined, and disclose intimate information to their physicians. The physician must earn the patient's trust, preserve his or her confidentiality, and act as a fiduciary. Physicians publicly profess that they will act for the benefit of their patients, putting patients' welfare and best interests first and helping them cope with illness, disability, suffering, and death.

The physician has a duty to respect the dignity and the cultural and spiritual uniqueness and traditions of every patient 9. Physician-assisted suicide and euthanasia were common during the time of Hippocrates, leading to their specific prohibition in the Hippocratic Oath Together with the prohibition of sexual relationships between physicians and patients and the duty to maintain patient confidentiality, the Oath provides a context for a therapeutic alliance to prevent the exploitation of patient relationships.

The Hippocratic Oath, of course, is not followed word for word today; however, it has been analyzed and applied over time in light of its fundamental principles. Acting in the best interests of the patient and recognizing the special nature of the patient—physician relationship, principles and prohibitions set ethical boundaries to prevent misunderstandings and misuse of medical authority.

These boundaries encourage patients to be open and honest regarding intimate health matters in a safe space, in the context of a trusted relationship. Physicians can influence patients, even in ways physicians may not appreciate. Patients seeking physician-assisted suicide may seek validation to end their lives.

Indeed, studies have shown that socially isolated, vulnerable persons seek social support and contact through visits with their physicians Physicians may influence patients based on their own fears of death and disability Evidence also suggests that many physicians who participate in physician-assisted suicide are adversely affected by the experience Some commentators question whether assisted suicide needs to be physician assisted and whether others might provide assistance instead For decades, the consensus has been that after a careful weighing of patient autonomy, beneficence, nonmaleficence, and societal interests, a patient may forgo life-sustaining treatment.

Although some lower courts have questioned the importance of this distinction 43 , the U. Supreme Court has distinguished the refusal of treatment from suicide 44 , Withdrawal of treatment based on patient wishes respects the patient's bodily integrity and right to be free of unwanted treatment.

Physician-assisted suicide and euthanasia are interventions done with the intent to end the patient's life 46 , This distinction is ethically and legally important 9. Some argue that withdrawing treatment on the basis of patient wishes—an omission, such as forgoing a mechanical ventilator in a patient with respiratory failure—and prescribing a lethal dose of medicine for the patient's use—a commission—are equivalent, because they both are acts that lead to the patient's death. However, commission doing something versus omission not doing something is not alone determinative.

Withdrawing ventilator support is an act, but the act merely removes an intervention that prevented a preexisting illness from running its course. The aim of the act is not to terminate the patient's life Intent and causation are critical factors in distinguishing physician-assisted suicide from withdrawal of life-sustaining treatment. Death may be accelerated if a patient requests withdrawal of a life-sustaining treatment and that request is carried out.

However, the patient could have refused the treatment when it was originally offered; therefore, he or she may request its withdrawal after it is started. If not for the intervention to which the patient consented, death would have occurred as a result of the underlying disease. The intent of treatment refusal is freedom from an unwanted intervention. A natural death follows due to the underlying disease in fact, imposing unwanted treatment is a bodily invasion and is considered unethical and an illegal battery.

In contrast, if a person disconnects a ventilator without patient consent and the patient subsequently dies, that person has acted wrongly. In both instances, the patient dies after withdrawal of life-sustaining treatment, but in very different ways under ethics and the law. Death by medication overdose is not a natural death due to an underlying medical condition. Research advances have introduced new life-sustaining technologies into clinical practice.

For example, many patients have life-sustaining devices, such as pacemakers, implantable cardioverter-defibrillators, and ventricular assist devices. Physicians inevitably encounter patients whose underlying disease no longer is being treated effectively by the device or who have a terminal illness the device cannot treat such as cancer.

Desiring a natural death, patients or their surrogates may request withdrawal of therapies delivered by these devices. In these situations, the death that follows is due to the underlying heart disease or other comorbid conditions 49 , Physicians should honor these requests. However, without a firm line drawn between withdrawal of life-sustaining treatment and physician-assisted suicide, or because of confusion between the two, some physicians might consider discontinuation of these therapies as intentional killing and refuse to implement such requests.

Patients and families often, but not always, see the line. Intent and causation also are critical factors in providing pain or symptom relief. Competent provision of symptom control is an ethical duty 9. Patients often fear the prospect of unrelieved pain.

Some physicians withhold pain medication because of ungrounded concerns that higher doses may accelerate death through respiratory suppression or that the patient may become addicted to the medication. Appropriate pain relief, however, rarely results in either 51 , 52 , and patients and families need to understand this Under the rule of double effect, strong ethical support exists for increasing pain medication for terminally ill patients if the intent is to relieve pain, even if it might shorten life 9 , 53 , The rule of double effect holds that an action undertaken with the intent of achieving a benefit is morally acceptable even if it has a harmful side effect, provided that the harmful side effect is not intended, the side effect is not the cause of the benefit, and the benefit outweighs the harm.

Vigorous management of pain and symptoms, such as dyspnea and nausea, at the end of life is ethical, even if the risk for shortening life is foreseeable, if the intent is to relieve those symptoms. The beneficial effects are pain and symptom control; the rare but potential harmful effect is respiratory suppression, but it is not intended. If the intent was to cause death, or to cause death to relieve pain, it would not be permissible. Although the language of rights is sometimes invoked, there is no right to physician-assisted suicide in the United States.

In fact, in landmark decisions, the U. Supreme Court overruled 2 lower courts that had found a constitutional right 45 , The lower-court rulings differed in important ways. In Compassion in Dying v. Washington 56 , the U.

Illuminating the Art of Medicine

Court of Appeals for the Ninth Circuit had held that persons have a right to choose how and when they die. In contrast, in Quill v. Vacco 43 , the U. Some patients could refuse life-sustaining treatment and thereby accelerate death, but others were prohibited from seeking prescriptions from physicians to hasten death. Supreme Court found both lower-court decisions unpersuasive. Instead, it found refusal of treatment and physician-assisted suicide to be very different.

Refusal of treatment, the Court concluded, means being free of the bodily invasion of unwanted medical treatment—a right to be left alone, not a right to something. Lending support to the rule of double effect, Justice Sandra Day O'Connor pointed out in her concurring opinion that vigorous pain control for the dying is ethical and available: Supreme Court ruled that there is no constitutional right to assisted suicide and that states may prohibit it. However, the Court also left open the possibility that individual states could legalize it.

One study found that persons receiving euthanasia or physician-assisted suicide in the Netherlands for psychiatric disorders were mostly women with complex and chronic psychiatric, medical, and psychosocial histories, and disagreement about patient eligibility among physicians was not unusual 58 , In Oregon, referrals for psychiatric evaluations have been infrequent 60 ; in , only 3 of persons who died under the law were referred for formal psychiatric or psychological evaluation.

A recent review found that safeguards and controls in jurisdictions where physician-assisted suicide and euthanasia are legal are not always followed 63 , and concerns have been raised about underreporting Subtle long-term changes in attitudes are difficult to detect. For example, although only a small number of persons have requested physician-assisted suicide in Oregon, as noted earlier, questions arise regarding whether that fact lessens these and other concerns. Limiting physician-assisted suicide to the terminally ill is said to be a safeguard, but prognostication raises practical concerns.

Laws such as Oregon's require a consultation from a second physician to confirm the diagnosis and prognosis. However, predicting how long a terminally ill patient will live or to what extent cognitive capacity will be impaired by disease or injury often is difficult. In addition, many patients do not have long-standing relationships with physicians who know them well. Furthermore, current safeguards are likely to be challenged. Restricting physician-assisted suicide to terminally ill adults with decision-making capacity raises legal concerns about arbitrary discrimination Fairness, it may be argued, would require granting access to decisionally incapable and non—terminally ill persons.

Also, because some patients cannot take pills, arbitrary discrimination could be asserted, unless the practice is broadened from physician-assisted suicide to euthanasia. Is a medicalized death a good death? Is the solution medicalization of death through medication overdose? Physician-assisted suicide is not a therapy. It runs counter to the goal of the patient rights movement to empower patients to experience a more natural death.

Medicalizing death does not address the needs of dying patients and their families. What is needed is care that emphasizes caring in the last phase of life, facilitating a natural dying process, and humanizing institutions that are used only when those settings are unavoidable. The 3 Wishes Project shows how even simple, nontechnologic approaches in the hospital intensive care unit can improve care, ease dying, enhance dignity, and give voice to patients and families while deepening the sense of vocation among clinicians The 3 Wishes researchers said the project:.

Earlier hospice care, avoiding the intensive care unit in the last month of life, and experiencing death at home are associated with family perceptions of better care for cancer patients Longitudinal relationships should be valued and supported by health care systems and payers. Home is where most patients want to die 69 , and even the discontinuation of ventilators 70 or implantable cardiac devices 71 can be done compassionately and effectively at home with hospice care.

This approach is more patient centered and a better use of resources when hospital care is not truly necessary. This is the control the medical profession can and should give patients and their families. Dying well requires science and an art of caring for the dying. The ACP recognizes that some patient cases will be medically and ethically challenging, that autonomy-based arguments in support of legalization of physician-assisted suicide are compelling, and that some might find physician-assisted suicide justifiable in rare circumstances.

Patients have the ultimate authority over their lives, but whether physicians should assist them in carrying out suicide is another matter. Despite changes in the legal and political landscape, the ethical arguments against legalization of physician-assisted suicide remain the most compelling.

We are mindful that ethics is not merely a matter for a vote. Majority support of a practice does not make it ethical. Medical history provides several cautionary examples of laws and practices in the United States such as racial segregation of hospital wards that were widely endorsed but very problematic. Furthermore, the ACP does not believe neutrality on this controversial issue is appropriate.

The medical profession should not be neutral regarding matters of medical ethics 9. The ACP is not neutral on practices that affect the patient—physician relationship and trust in the profession, such as laws that restrict or mandate discussions with, or certain recommendations for, patients. A few patients want to control the timing and manner of death; many more are fearful of what living the last phase of life with serious illness will be like.

To the extent that the debate about legalizing physician-assisted suicide is a dilemma because of the failings of medicine to adequately provide comfort and good care to dying patients, medicine should do better. Legalized physician-assisted suicide medicalizes suicide Physician-assisted suicide is not a private act but a social one, with effects on family, community, and society. When the patient's suffering is interpersonal, existential, or spiritual, care coordination is necessary, and the roles of the physician are to remain present; provide compassionate care; and enlist the support of social workers, psychologists, hospice volunteers, chaplains, and family in addressing sources of suffering that are beyond the scope of medical care.

Regardless of jurisdiction, physicians may encounter patients who request physician-assisted suicide or express fear of suffering with death. Patient concerns and reasons for the request should be discussed thoroughly. As for all patients nearing the end of life, the physician should:. Be present 74 , listening to the patient and keeping dialogue open, exploring the reasons for the request, trying to understand its meaning and seeking alternative solutions where possible. Facilitate advance care planning and an understanding of surrogate decision making, as desired by the patient.

Ensure that the patient is fully informed of the right to refuse treatments and what that entails. Discontinue or do not start medications and interventions that interfere with the patient's values, goals, and preferences. Assess and treat the patient's pain and other distressing physical and psychological symptoms. Assess and optimize patient function through a whole-patient focus.

Getting Doctors to Listen

Coordinate, as desired by the patient, the efforts of other members of the health care team, and use community-based resources to address financial, emotional, and spiritual burdens on the patient and family. Prepare the patient and family for what they can expect as illness progresses, addressing uncertainty together and ensuring that the patient and family have informed expectations, including, for example, an understanding that advanced illness often entails a natural loss of appetite and thirst.

Regularly assess the patient's status and decision-making capacity. Arrange hospice care at home if that is the patient's preference, being cognizant that palliative and hospice care expertise should be used as early as is indicated. Many patients in the United States receive such care too late or not at all. Requests for physician-assisted suicide are unlikely to persist when compassionate supportive care is provided 76 , However, providing this care may be challenging, especially in today's time-pressured health care environment.

Physicians should consult with colleagues in caring for the patient and family but also seek support for themselves. Collegial support also reinforces better care of the patient and family. All too often, we announce our triumphs but camouflage our losses, as if the death of a patient represents a personal failure. The need to ensure the central role of families in care; provision of consistent, high-quality care; and education, training, and support of physicians were identified as overarching themes in a series of reports on end-of-life care recently issued by the British Medical Association The British Medical Association and Australian Medical Association both reaffirmed opposition to legalization of physician-assisted suicide and euthanasia in The art of medicine is arguably most needed as patients live out the last phase of life.

The ACP and its members, including those who might lawfully participate in the practice, should ensure that all persons can rely on high-quality care through to the end of life, with prevention or relief of suffering insofar as possible, a commitment to human dignity and the management of pain and other symptoms, and support for family.

Throughout patients' lives, including as they face death, medicine must strive to give patients the care, respect, and comfort they deserve. Hospitalized Elderly Longitudinal Project. A controlled trial to improve care for seriously ill hospitalized patients. Racially associated disparities in hospice and palliative care access: Institute of Medicine; Committee on Approaching Death. The Supreme Court and physician-assisted suicide—the ultimate right [Editorial]. Responding to patients requesting physician-assisted death: Decisions near the end of life.

Loneliness as a public health issue: Mental disorders and the desire for death in patients receiving palliative care for cancer. What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. Death with Dignity Act. Implementing a Death with Dignity program at a comprehensive cancer center. A national survey of physician-assisted suicide and euthanasia in the United States.

How does legalization of physician-assisted suicide affect rates of suicide? Social contagion effects of physician-assisted suicide: Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. The New York Times.

National disability organizations that oppose the legalization of assisted suicide. The Oregon Death with Dignity Act: Emotional and psychological effects of physician-assisted suicide and euthanasia on participating physicians. Director, Missouri Department of Health, S. The rule of double effect—a critique of its role in end-of-life decision making.

Compassion in Dying v. A study of the first year of the end-of-life clinic for physician-assisted dying in the Netherlands. Euthanasia and assisted suicide of patients with psychiatric disorders in the Netherlands to Physician-assisted death for patients with mental disorders—reasons for concern [Editorial].

Prevalence of depression and anxiety in patients requesting physicians' aid in dying:

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