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Seven legal barriers to end-of-life care: myths, realities, and grains of truth.

OBJECTIVE: The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) End-of-Life Care Consensus Panel was convened in 1997 to identify clinical, ethical, and policy problems in end-of-life care, to analyze critically the available evidence and guidelines, and to offer consensus recommendations on how to improve care of the dying. Topic selection and content presentation were carefully debated to maximize the project's focus on providing practical clinical and other guidance to clinicians who are not specialists in palliative care. This statement examines current legal myths, realities, and grains of truth in end-of-life care. PARTICIPANTS: The Consensus Panel comprises 13 medical and bioethics experts, clinicians, and educators in care at the end of life selected by the Ethics and Human Rights Committee, College leadership, and the Center for Ethics and Professionalism at the ACP-ASIM. EVIDENCE: A literature review including a MEDLINE search of articles from 1970-1998 and review of end-of-life care literature and organizational bibliographies was conducted. Unpublished sources were also identified by participants, as was anecdotal clinical experience. CONSENSUS PROCESS: The draft statement was debated by panel members over a series of 3 to 4 meetings. For this statement, the initial draft and subsequent revised drafts were discussed in 1998-1999. The statement then underwent external peer review and revision before panel approval and the journal peer review process. CONCLUSIONS: Legal myths about end-of-life care can undermine good care and ethical medical practice. In addition, at times ethics, clinical judgment, and the law conflict. Patients (or families) and physicians can find themselves considering clinical actions that are ethically appropriate, but raise legal concerns. The 7 major legal myths regarding end-of-life care are: (1) forgoing life-sustaining treatment for patients without decision-making capacity requires evidence that this was the patient's actual wish; (2) withholding or withdrawing of artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal; (3) risk management personnel must be consulted before life-sustaining medical treatment may be terminated; (4) advance directives must comply with specific forms, are not transferable between states, and govern all future treatment decisions; oral advance directives are unenforceable; (5) if a physician prescribes or administers high doses of medication to relieve pain or other discomfort in a terminally ill patient, resulting in death, he/she will be criminally prosecuted; (6) when a terminally ill patient's suffering is overwhelming despite palliative care, and he/she requests a hastened death, there are no legally permissible options to ease suffering; and (7) the 1997 Supreme Court decisions outlawed physician-assisted suicide. Many legal barriers to end-of-life care are more mythical than real, but sometimes there is a grain of truth. Physicians must know the law of the state in which they practice. JAMA. 2000;284:2495-2501.

Advance Directives↗

Anencephaly and the interruption of pregnancy: policy proposals for HECs.

This article is directed to hospital communities where absolute proscriptions exist against abortion. The assumption is that many will be Catholic institutions and therefore Catholic moral teachings are examined carefully. By addressing anti-abortion arguments in the context of anencephaly, I hope to show that within even the most conservative moral traditions, humane exceptions to absolute proscriptions against abortion can be justified. More specifically, the article is directed to HECs which either have unstated or ambiguous policies on abortion. It will attempt to show what a reasonable policy could look like and how it could be defended. For committee members not involved in policy questions about abortion, it may stimulate some ethical discussion.

Abortion, Induced↗

The licitness (according to Roman Catholic premises) of inducing the non-viable anencephalic fetus: reflections on Professor Drane's policy proposals.

James Drane's policy proposals for Roman Catholic hospitals, which would allow induction of a firmly diagnosed anencephalic fetus upon the mother's considered request, are defended. Drane's defense of his proposals, by focussing upon the empirical facts of anencephaly and attempting to abstract from the question of whether or not the anencephalic is a potential person, is held to be untenable. However, examination of the Roman Catholic proscription against abortion shows that it applies to humans who are, or might be, persons or potential persons. And the facts of anencephaly show that the anencephalic does not have the biological substrate to be a potential person. Hence the proscription does not apply to induction of the anencephalic fetus.

Abortion, Induced↗

Ethical dilemmas in hospice and palliative care.

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or less to receive hospice care under the Medicare Hospice Benefit. Care is reimbursed on a per diem basis, and inpatient care is restricted to pain and symptom management that cannot be managed in another setting. Ethical dilemmas that face physicians referring patients to hospice programs include the ability of clinicians to predict accurately a patient prognosis of 6 months or less, and to what extent hospice programs and clinicians are obligated to provide patients with full information about their illness, as the Medicare Hospice Benefit requires that patients sign an informed consent in order to elect the hospice benefit. There are ethical dilemmas that affect day-to-day patient management in palliative care programs including physician concern over the use of morphine because of possible respiratory depression in the advanced cancer patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat near the end of life, and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. By following current research dogma, and only considering patient-generated data as valid, the patient population that most needs to be studied is excluded. A new methodology specifically for palliative care research is needed to provide information on the patients who are cognitively or physically impaired and unable to provide input regarding their needs near the end of life.

Bioethical Issues↗

Some ways that technology and terminology distort the euthanasia issue.

Technology and terminology often detract from a reasoned appraisal of the euthanasia option, especially in those discussions that argue for euthanasia's incorporation into a beneficence-based medical model. "Beneficent euthanasia," assuming there is such a thing, poses special challenges to the traditional provider-patient relationship. These challenges argue for well-defined limits of beneficence and a more equitable distribution of responsiblity between participants. We should not allow technology and terminology to generate an unrealistic portrayal of patient death and its ramifications. Participants need to acknowledge their roles in the decision to kill and the obligations that those roles entail. Perhaps we can reach ethical consensus concerning euthanasia by first reasserting our span of control over the technology that can extend the near-death period and by openly discusssing euthanasia's implications.

Altruism↗

A philosophical approach to conjoined twins.

There are increasing numbers of attempts to surgically separate conjoined twins. Almost every type of conjoined twins have been separated, with varying results. Surgeons must often make the decision as to the desirability and feasibility of separation. These decisions are complicated by ethical problems that involve patient privacy, the allocation of shared organs, and in some instances the necessity for one twin to die to save the other. Although life as a conjoined twin would appear to be intolerable, there are historical as well as current instances of conjoined twins who have progressed to adulthood as relatively well-adjusted individuals. Thus, in some situations, it may be better not to operate on these patients. At one time or another, when individual cases have been studied by theologians, all faiths have agreed that the sacrifice of one twin to save the other is ethical. When one twin is clearly stronger than the other and has the best chance for long-term survival, it also appears to be desirable to give that twin the shared organs that allow gastrointestinal and genitourinary function and ambulation. It is now possible to predict the pattern of shared organs in most cases based on an external examination. It is no longer necessary to subject these patients to prolonged, invasive tests, which may be dangerous and provide at best incomplete information. The surgeon should take great care to protect his patients' privacy and resist efforts by the media to create a "television circus"" over these patients.

Abnormalities, Multiple↗

Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis.

Mechanical ventilation, both invasive and non-invasive, may be an effective means of improving the quality of life and prolonging the survival of patients suffering from amyotrophic lateral sclerosis (ALS). However, the attitude towards this palliative measure varies greatly between different centres and countries. One of the arguments cited against this procedure is the fear that a patient might request the physician to discontinue life support. We believe that the question of withdrawal of mechanical ventilation can only be meaningfully addressed in the general context of palliative care. Here, we review possible modes of action in response to a patient's request for life support withdrawal and their medical, legal and ethical implications. We propose that the following goals should be pursued: (1) prevention of unwanted ventilation by early, open discussion with patient and relatives, (2) delivery of optimal palliative care by the caring team, (3) recognition of the patient's right to withdraw his/her consent to an invasive medical procedure. If these goals have been met, it may be medically, legally and ethically justified for the physician to take all necessary steps to ensure a peaceful death after discontinuation of life support.

Amyotrophic Lateral Sclerosis↗