Many states prohibit patients from appointing their physicians as health care proxies, fearing paternalism and conflict of interest. But the potential for conflict is not unique to physicians, and patients may have compelling reasons to prefer that their doctor make decisions on their behalf. Managing potential conflicts serves patients better than denying them the right to choose who will make health care decisions for them when they are no longer competent.

The Tuskegee Syphilis Experiment (TSE) has shaped African Americans’ views of the American health care system, contributing to a reluctance to participate in biomedical research and a suspicion of the medical system. This essay examines public discourses surrounding President Clinton’s attempt to restore African Americans’ trust by apologizing for the TSE. Through a narrative reading, we illustrate the failure of this text as an attempt to reconcile the United States Public Health Service and the African American public. (...) We conclude by noting the limitations of rhetoric when equal prominence is not given to policy proposals in national apologies. (shrink)

_The study investigates the relationship between healthcare spending and economic growth in six selected Sub-Saharan African countries: Nigeria, Ghana, Togo, Benin, Cameroon, and Ethiopia. The study employs the Autoregressive Distributed Lag (ARDL) model as an estimation technique to analyse the panel data which spans from 2000 to 2020. The research examines both the short- and long-run impacts of healthcare spending, population growth, and life expectancy on real GDP (a proxy for economic growth). Based on the ARDL panel results, it (...) is stated that, in the short run, both healthcare spending and life expectancy exert a significant negative impact on real GDP. However, in the long run, real GDP is positively and significantly influenced by all the regressors, highlighting the crucial role of healthcare investment in driving economic development. Additionally, the Granger causality test reveals a bidirectional relationship between real GDP and per capita health spending, suggesting that enhancements in healthcare can stimulate economic growth, and economic growth, in turn, can lead to increased healthcare investments. The study strongly recommends that policymakers in these countries adhere to the Abuja Declaration by allocating 15% of their national budgets to the healthcare sector to bolster economic outcomes. These findings emphasize the critical importance of sustained healthcare investment as a catalyst for long-term economic growth in Sub-Saharan Africa._. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which (...) decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of (...) substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. Trial RegistrationISRCTN89993391. (shrink)

Little is known about how certain patient characteristics can affect the timing of an ethics consultation, which has been hypothesized to affect patient length of stay. This study assessed how specific patient characteristics affect the timing of an ethics consultation, namely, age (over 65 years), race, Medicaid status, the presence of a living will, the presence of a health care proxy, and the absence of decisional capacity. Moving beyond the typical case-series evaluation of an ethics consultation service, (...) this study used an innovative approach to model how predisposing, enabling, and need factors affect health behavior and subsequently affect health outcomes for patients who received an ethics consultation at a Catholic health care system in Oklahoma. (shrink)

The Institute of Medicine's report, the American Medical Association's project, the Open Society Institute's and the initiative sponsored by the Robert Wood Johnson Foundation have focused attention on improving the care of dying patients. These efforts include advance care planning and the use of written advance directives. Although previous studies have provided quantitative descriptions of patient preferences for life-sustaining treatment, including those documented in written ADs, to our knowledge open-ended written preferences have not been studied. Studies of these (...) open-ended preferences could highlight issues with respect to quality end-of-life care. The purpose of this study was to explore the open-ended proxy, health, and personal care preferences of people with HIV as expressed in a written AD form. (shrink)

Background There are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto (...) Joint Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds. Discussion The top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill. Summary Although many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge. (shrink)

Tracing the evolution of political conversations about health care spending and their relationship to the formation of policy is a valuable exercise. Health care spending is about science and ethics, markets and government, freedom and community. By the late 1980s the unique upward trajectory of post-Medicare U.S. health care spending had been established, recessions and tax cuts were eroding federal and state budgets, and efforts to harness market forces to serve policy goals were accelerating. (...) From the initial writings on “managed competition,” through the failed Clinton health reform effort in the early 1990s, to the passage of the Affordable Care Act in 2010, the policy narrative of health spending acquired a superficial consistency. On closer examination, however, it becomes apparent that the cost problem has been repeatedly reframed in political discourse even during this relatively brief period. The clearest transition has been from a narrative centered on rationing necessary care to one committed to reducing wasteful care – although the role of accumulated law and regulation in perpetuating waste remains largely unrecognized and the recently articulated commitment to population health seems an imperfect proxy for explicitly developing social solidarity with respect to health and health care in the United States. (shrink)

_Covert treatment raises a number of ethical and practical issues in psychiatry. Viewpoints differ from the standpoint of psychiatrists, caregivers, ethicists, lawyers, neighbours, human rights activists and patients. There is little systematic research data on its use but it is quite certain that there is relatively widespread use. The veil of secrecy around the procedure is due to fear of professional censure. Whenever there is a veil of secrecy around anything, which is aided and abetted by vociferous opposition from some (...) sections of society, the result is one of two: 1) either the activity goes underground or 2) it is reluctantly discarded, although most of those who used it earlier knew it was needed. Covert treatment has the dubious distinction of suffering both such secrecy and disapproval. Covert treatment has a number of advantages and disadvantages in psychotic disorders. The advantages are that it helps solve practical clinical problems; prevents delays in starting treatment, which is associated with clinical risks and substantial costs; prevents risk of self-destructive behaviour and/or physical assault by patient; prevents relapse; and prevents demoralization of staff. The disadvantages are that it maybe used with malafide intent by caregivers with or without the complicity of psychiatrists; it may be used to force conformity in dissenters; and the clinician may land himself in legal tangles even with its legitimate use. In addition, it may prevent insight, encourage denial, promote unhealthy practices in the treating staff and prevent understanding of why noncompliance occurs in the first place. Some support its use in dementia and learning disorders but oppose it in schizophrenia. The main reason is that uncooperative patients of schizophrenia (and related psychoses) are considered to be those who refuse treatment but retain capacity; while in dementia and severe learning disorder, uncooperative patients are those who lack capacity. This paper disputes this contention by arguing that although uncooperative patients of schizophrenia (and related psychoses) apparently retain capacity, it is limited, in fact distorted, since they lack insight. It presents the concept of insight-unconsciousness in a patient of psychosis. Just as an unconscious patient has to be given covert medical/surgical treatment, similarly an insight-unconscious patient with one of the different psychoses (in the acute phase or otherwise) may also have to be given covert treatment till he regains at least partial insight. It helps control psychotic symptoms and assists the patient in regaining enough insight to realize he needs treatment. Another argument against covert treatment is that people with schizophrenia have the capacity to learn and therefore can learn that they are required to take medications, but if medications are given covertly it may well fuel their paranoia. However, it should be noted that the patient who has lack of insight cannot learn unless he regains that insight, and he may need covert treatment to facilitate this process. Covert treatment can fuel the paranoia, true, but it can also control the psychotic symptoms sufficiently so that regular treatment can be initiated. In a patient who refuses to accept that he is sick and when involuntary commitment is not an option to be considered, covert treatment is the only option, apart from physical restraint. Ultimately, a choice has to be made between a larger beneficence (control of symptoms and start of therapy) and a smaller malevolence (necessary therapy, but without the patient's knowledge and consent). A number of practical clinical scenarios are outlined wherein the psychiatrist should adopt covert treatment in the best interests of the patient. Ethical issues of autonomy, power, secrecy and malafide intent arise; each of these can be countered only by non-malfeasance (above all, do no harm) under the overarch of beneficence (even above that, dare to care). An advance directive with health care proxy that sanctions covert treatment is presented. Questions raised by the practical clinical scenarios are then answered. The conclusions are as follows: covert treatment, i.e, temporary treatment without knowledge and consent, is seldom needed or justified. But, where needed, it remains an essential weapon in the psychiatrist's armamentarium: to be used cautiously but without guilt or fear of censure. However, the psychiatrist must use it very judiciously, in the rarest of rare cases, provided: i) he is firmly convinced that it is needed for the welfare of the patient; ii) it is the only option available to tide over a crisis; iii) continuing efforts are made to try and get the patient into regular psychiatric care; iv) the psychiatrist makes it clear that its use is only as a stop-gap; v) he is always alert to the chances of malevolence inherent in such a process and keeps away from conniving or associating with anything even remotely suspicious; and vi) he takes due precautions to ensure that he does not land into legal tangles later. The need of the hour is to explore in greater detail the need and justification for covert treatment, to lay out clear and firm parameters for its legitimate use, follow it up with standard literature and, finally, to establish clinical practice guidelines by unconflicted authors. The term "covert treatment" is preferable to "surreptitious prescribing"; they should not be used synonymously, the latter term being reserved for those cases where there is malafide intent._. (shrink)

How can researchers use race, as they do now, to conduct health-care studies when its very definition is in question? The belief that race is a social construct without “biological authenticity” though widely shared across disciplines in social science is not subscribed to by traditional science. Yet with an interdisciplinary approach, the two horns of the social construct/genetics dilemma of race are not mutually exclusive. We can use traditional science to provide a rigorous framework and use a social-science (...) approach so that “invisible” factors are used to adjust the design of studies on an as-needed basis. One approach is to first observe health-care outcomes and then categorize the outcomes, thus removing genetic differences as racial proxies from the design of the study. From the outcomes, we can then determine if there is a pattern of conceivable racial categories. If needed, we can apply dynamic notions of race to acknowledge bias without prejudice. We can use them constructively to improve outcomes and reduce racial disparities. Another approach is nearly identical but considers race not at all: While analyzing outcomes, we can determine if there are biological differences significant enough to identify classifications of humans. That is, we look for genetic patterns in the outcomes and classify only those patterns. There is no attempt to link those patterns to race. (shrink)

Medical technology, specialization, and the corporatization of health delivery systems in the late twentieth century have all helped give birth to an unwelcome but unavoidable responsibility for individuals with family or friends—serving as a health care proxy. The responsibility comes without monetary compensation, is often involuntary, and lacks any real guidelines beyond the duty to make life-and-death decisions in circumstances over which the proxy has little control.The parameters of the proxy's job have evolved somewhat (...) awkwardly in statutes and case law, as lawmakers and judges have tried to apply conventional concepts to novel circumstances. This article examines the legal and functional status of the proxy, as well as the strengths and weaknesses of current public policy as reflected by state advance directive and surrogate decision-making laws. The first section of the article provides a historical perspective of our current notions of agency law as relevant to health care proxies. (shrink)

The prescription of practice guidelines for consent in neonatal care that are appropriate for all interventions faces substantial problems. Current practice varies widely. Consent in neonatal care is compromised by postnatal constraints on information sharing and decision-making. Empirical research shows marked individual and cultural variation in the degree to which parents want to contribute to decision-making on behalf of their infants. Conflict between the parents’ wishes and the infant’s best interests could arise if consent for a recommended intervention (...) were refused, and parental refusal of consent may have to be overridden. Consent to an appropriate package of care (such as special, intensive or palliative care) may be morally preferable to a universal requirement to seek consent for all individual interventions entailed by that package. (shrink)

Recognizing that GLBTI individuals are often barred from visiting their partners in hospitals or from acting as health care surrogates for incapacitated partners, President Obama directed the Department of Health and Human Services to address these issues. In response, the department amended its rules to prohibit hospitals from restricting, limiting, or denying visitation privileges on the basis of gender identity or sexual orientation. But the changes do not affect the designation of a health care surrogate, (...) a matter largely governed by state law. Therefore, subject to state law, same-sex partners can still be legally barred from making health care decisions for their incapacitated partners, and it remains essential that they execute advance directives and appoint one another as their health care proxies. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will be highlighted: (...) (1) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor (...) to determine who should make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (shrink)

Advance directives have been lauded by scholars and supported by professional organizations, Congress, and the United States Supreme Court. Despite this encouragement, only a small number of capable patients execute living wills or appoint health care agents. When patients do empower proxies, doctors may be uncertain about the scope of their duties and obligations to these persons who, in theory, stand in the shoes of the patient. This article argues for a conscious focus on the ethical duties, emotional (...) supports, and guidance owed by physicians to health care agents. (shrink)

In a recent special supplement to the Hastings Center Report entitled “Improving End-of-Life Care—Why Has It Been So Difficult?” Robert Burt wrote the following in an essay ominously entitled “The End of Autonomy”: No one should be socially authorized to engage in conduct that directly, purposefully, and unambiguously inflicts death, whether on another person or on oneself. Decisions that indirectly lead to death should be acted upon only after a consensus is reached among many people. No single individual should (...) be socially authorized to exercise exclusive control over decisions that might lead to death, whether that individual is the dying person, the attending physician, or a family member acting as health care proxy. (shrink)

Despite clear legislative and judicial support, a well established ethical consensus, and increased efforts at information dissemination and education, proxy decision making for incapacitated patients continues to produce moral muddle and poor resolutions in end-of-life care.In her analysis of the proxy-doctor relationship, Nancy Dubler spells out the institutionalized patterns that keep the promise of proxy directives so often unrealized. Facing medically complex care of an incapacitated patient, health care teams are apt to view (...) the proxy as a potentially indecisive or unrealistically demanding decision-maker, less a stand-in for the patient than an interloper whose improper, misguided, or self-interested decisions will work against the patient's best interests. So perceived, proxies are routinely relegated to the edges of care planning discussions, left relatively uninformed and unconsulted, and then suddenly thrust center stage to face decisions they find overwhelming. Confronting such decisions, proxies need support and compassion. What they often find is isolation and distrust, a web of professional and institutional practices that trammel their efforts to understand and execute their role. (shrink)

This article explores some of the issues raised by Munchausen’s Syndrome by Proxy (MSbP) and the relationship between medicine and law, specifically the discourses which feature in the courtroom portraying motherhood and expectations of parenting. These discourses are often hidden yet play a determining role in prosecutions for alleged maltreatment of children involving medically unexplained infant death syndrome. We offer a critique of MSbP and seek to unveil the assumptions about mothers, the parent predominantly affected by the ‘diagnosis’, and (...) mothering that underlie the association of women accused of deliberating harming their children. We suggest such insights are valuable because although the syndrome has never acquired a clear medical or legal definition, it has had repeated appearances in the literature and courtroom over the last 25 years and has more recently attracted attention from government, health care practitioners, academics and the media. We explore these issues through an examination of two recent Court of Appeal decisions in England: those of Sally Clark and Angela Cannings. (shrink)

Theological basis -- Religion and health care -- The dignity of human life -- The integrity of the human person -- Implications for health care -- Theological principles in health care ethics -- Method -- The levels and questions of ethics -- Freedom and the moral agent -- Right and wrong -- Metaethics -- Method in Catholic bioethics -- Catholic method and birth control -- The principle of double effect -- Application -- Forgoing treatment, (...) pillar one: ordinary and extraordinary means -- Forgoing treatment, pillar two: killing and allowing to die -- Forgoing treatment, pillar three: decisions by competent patients -- Forgoing treatment, pillar three: decisions for incompetent patients -- Forgoing treatment, pillar three: advance directives -- Hydration and nutrition -- Physician-assisted suicide and euthanasia -- Medical futility -- Pain and pain management -- Ethics committees -- Embryonic stem cells and the beginning of human personhood -- Genetic engineering -- Allocating health care resources -- The use and misuse of the allocation argument. (shrink)

Informed consent is a vital part of ethical research. In emergency health care research environments such as ambulance services and emergency departments, it is sometimes necessary to conduct trial interventions or observations without patient consent. At times where treatment is time critical, it may be impossible or inappropriate to seek consent from next of kin. Emergency medicine is one of the few areas where the process of informed consent can be waived to allow research to proceed without patient (...) consent. This article will explore the ethics of informed consent in the prehospital emergency research context. This will include an overview of current Australian guidelines for ethical research, and recent changes in law internationally which have affected the conduct of international emergency health research. An overview of the ethical reasoning behind the waiver of informed consent in emergency research is presented, also addressing issues relating to emergency health research such as proxy consent, unconscious patients, and patient decision making capacity. The unusual circumstances encountered in the prehospital ambulance environment will also be discussed, including the dependent and coercive relationship between patients and ambulance professionals, and a lack of alternatives for care and transport for patients who refuse consent. The conflict arising from differences in medical culture and values between patients and health care professionals will also briefly be discussed. It will be argued that, while emergency care research should not require informed consent due to the restrictions of time and dependent nature of the relationship between patient and health professional, emergency health researchers still have a responsibility to consider the patients’ perspective when considering the ethical issues of an emergency research project, particularly in the prehospital environment. (shrink)

Objective: To assess the knowledge of four groups of individuals regarding who is legally authorised to consent to health care or research involving older patients.Design: A provincewide postal survey.Setting: Province of Quebec, Canada.Participants: Three hundred older adults, 434 informal caregivers of cognitively impaired individuals, 98 researchers in aging and 136 members of research ethics boards .Measurements: Knowledge was assessed through a pretested postal questionnaire comprising five vignettes that describe hypothetical situations involving an older adult who requires medical (...) class='Hi'>care or is solicited for research. The respondent had to identify the person who is legally authorised to provide consent.Results: Nearly 80% of all respondents provided the correct answer when the hypothetical scenario depicted a person who was competent to consent or incompetent but legally represented. Knowledge was worse for the scenario describing a research situation that involved an incompetent adult without a legal guardian.Conclusion: The observed lack of knowledge raises doubts about the ability of current legislation to truly protect the rights of older adults with diminished decision making capacity. It points to the need for educational programmes aimed at increasing public awareness of the legislation put in place for those requiring special protection. (shrink)

Persons infected with the Human Immunodeficiency Virus often experience intermittent life-threatening infections, a progressive decrease in cognitive abilities, and a loss of capacity to communicate their wishes to their family and medical care providers. Accordingly, AIDS patients are among those most likely to benefit from the increased availability of legally recognized forms of advance care planning. Although the three countries examined in this article differ greatly in the prevalence of HIV infection, the legal status of advance directives, and (...) in the attitudes toward their use, a collection of case studies is used to demonstrate that an ability to address the specific needs, values and goals of individual patients is promoted by the availability of a variety of options for implementing advance directives or health care proxies. The conclusion of the analysis is that the best option in a specific context will depend upon differences in individual values and medical objectives of the sort discussed in the case studies. Das mit der HIV-Infektion verbundene Krankheitsbild ist durch wechselnde lebensbedrohliche Infektionen und den fortschreitenden Verfall kognitiver Fähigkeiten gekennzeichnet. Es führt zudem häufig zum Verlust der Möglichkeit, Behandlungswünsche gegenüber Ärzten und Angehörigen zu äußern. Deshalb gehören besonders AIDS-Patienten zu denjenigen, die von rechtlich anerkannten vorsorglichen Patientenverfügungen profitieren werden.In diesem Artikel werden drei Länder betrachtet, die sich hinsichtlich der Häufigkeit des Auftretens der HIV-Infektion sowie des rechtlichen Status von und der Einstellung zu Patientenverfügungen erheblich unterscheiden. Fallstudien belegen allerdings, daß nicht allein die kulturellen und sozialen Bedingungen für die jeweils beste Form der Patientenverfügung ausschlaggebend sind. Voraussetzung für die Möglichkeit, den Bedingungen, Wert- und Zielvorstellungen des individuellen Patienten zu entsprechen, ist auf jeden Fall die Verfügbarkeit unterschiedlicher Formen von Patienten- und Betreuungsverfügungen. Auch innerhalb eines Kulturkreises müssen daher verschiedene Formen vorsorglicher Willensäußerungen des Patienten rechtlich anerkannt werden. Welche Art von Verfügung jeweils die beste Option darstellt, ist dabei abhängig von medizinischen Bedingungen und persönlichen Wertvorstellungen, wie sie in den Fallstudien diskutiert werden. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Moral Distress for the Physician AssistantSharyn L. KurtzMy morning rounds as an inpatient medical oncology physician assistant began as usual. I arrived at the hospital early to receive 7 a.m. sign out from the covering resident. The overnight report began favorably. All patients remained stable. Even my patient, whom I will call Mrs. Walker,* had a quiet night. However, given her tenuous admission presentation, including altered mental status, hypercalcemia (...) (high levels of calcium in the blood), atrial fibrillation with rapid ventricular response (irregular, rapid heart function), widespread metastatic lung cancer, and recent neurosurgery to stabilize her spine, I decided to prioritize Mrs. Walker’s morning evaluation.Examining her medical chart proved reassuring. Her tachycardia (rapid heart rate) had been better controlled over the past two days. Her hypercalcemia had been treated, such that she was no longer somnolent. In fact, she was now arousable, conversant, and able to offer some input regarding her healthcare wishes. However, because she was experiencing intermittent delirium, her husband continued to act as her primary medical decision–maker.As her health care proxy, Mr. Walker had experienced conflict with the medical team during his wife’s prior hospital admission. However, even though Mr. Walker lived greater than 45 minutes from the hospital and was not able to visit regularly, he and I spoke daily by phone, which allowed me the opportunity to offer regular medical updates. Mr. Walker felt overwhelmed with his wife’s condition, but he was comfortable with the care the medical team had provided thus far. He was encouraged by the small improvements we had noted since her hospital admission five days prior.Mr. Walker stated on hospital admission that he wished for DNR/I orders to be placed, since this cohered with his wife’s previously stated wishes. However, he still wanted “everything else done” in terms of treating his wife’s medical conditions, including treatment of her atrial fibrillation, pain, and electrolyte anomalies. Most of all, he hoped Mrs. Walker would soon have increased mobility, which he felt would grant his wife the best quality of life possible. He was adamant that “being active” was what Mrs. Walker wished for, and that she had never wanted to be confined to bed.Mr. Walker’s requests seemed reasonable. Although Mrs. Walker’s lung cancer was widespread, and although many on the medical team felt she would not improve to the point where palliative chemotherapy could be considered, [End Page E13] she had stabilized. Her recent spine surgery had been successful, and she was healing adequately. The neurosurgeons had cleared Mrs. Walker for increased activity out of bed as soon as she could be fitted with a lumbar brace. The pain and palliative care specialists felt that Mrs. Walker’s residual back pain and delirium could be well managed with oral medications.Prior to my entering Mrs. Walker’s room to begin her physical evaluation, I was met by her seasoned nurse, whom I will call Amy. “Sharyn,” Amy warned, “Mrs. Walker’s heart rate is 150 and she is complaining of chest pain.” I entered Mrs. Walker’s room, and she was notably uncomfortable, grasping her chest. The monitor showed that Mrs. Walker’s heart rate was in fact in the 150’s. She was pale, short of breath, and wheezing. “Mrs. Walker,” I asked, “how severe is your chest pain on a scale from 1 to 10?” Mrs. Walker replied, “Nine.” I asked Amy to obtain an EKG, to provide oxygen, and to administer an IV medication that would slow Mrs. Walker’s heart rate. I stepped out of the room to place the computer orders, and I paged my attending physician to let him know about Mrs. Walker’s change in status. After hearing the update, my attending physician, whom I will call Dr. Clark, stated that he agreed with all of my treatment decisions thus far. He was on his way into the hospital. I planned out my next steps with him on the phone and returned to the patient’s room.The monitor gave evidence that Mrs. Walker’s heart rate was improving. Mrs. Walker reported that her pain was now “4 out of... (shrink)

Objectives: After years of public discussion too little is still known about willingness to accept the idea of writing an advance directive among various groups of people in EU countries. We investigated knowledge about and willingness to accept such a directive in cancer patients, healthy controls, physicians, and nursing staff in Germany.Methods: Cancer patients, healthy controls, nursing staff, and physicians were surveyed by means of a structured questionnaire.Results: Only 18% and 19% of the patients and healthy controls respectively, and 10% (...) of the medical staff had written an advance directive. However, 50–81% of those surveyed indicated that they wished to write one. This intention was associated with deteriorating health . Only 29% of the healthy controls and 43% of the patients knew about the possibility of appointing a health care proxy. A majority in all groups believed that advance directives may influence the course of treatment , yet half of those surveyed in all groups fear that patients could be pressurised into writing an advance directive, and 38–65% thought that relatives could abuse such documents.Conclusions: Only a minority of the participants had written an advance directive and knew about the possibility of authorising a health care proxy. Deteriorating health was associated with increasing willingness to make a directive. Despite a majority belief that advance directives may influence treatment at the end of life, other factors limit their employment, such as fear of abuse. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker suffers from dementia and (...) is unable to make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

Background: The Albanian medical system and Albanian health legislation have adopted a paternalistic position with regard to individual decision making. This reflects the practices of a not-so-remote past when state-run facilities and a totalitarian philosophy of medical care were politically imposed. Because of this history, advance directives concerning treatment refusal and do-not-resuscitate decisions are still extremely uncommon in Albania. Medical teams cannot abstain from intervening even when the patient explicitly and repeatedly solicits therapeutic abstinence. The Albanian law on (...) health care has no provisions regarding limits or withdrawal of treatment. This restricts the individual's healthcare choices.DiscussionThe question of 'medically futile' interventions and pointless life-prolonging treatment has been discussed by several authors. Dutch physicians call such interventions 'medisch zinloos' (senseless), and the Netherlands, as one of the first states to legislate on end-of-life situations, actually regulates such issues through appropriate laws. In contrast, leaving an 'advance directive' is not a viable option for Albanian ailing individuals of advanced age. Verbal requests are provided during periods of mental competence, but unfortunately such instructions are rarely taken seriously, and none of them has ever been upheld in a legal or other official forum.SummaryEnd-of-life decisions, treatment refusal and do-not-resuscitate policies are hazardous options in Albania, from the legal point of view. Complying with them involves significant risk on the part of the physician. Culturally, the application of such instructions is influenced from a mixture of religious beliefs, death coping-behaviors and an immense confusion concerning the role of proxies as decision-makers. Nevertheless, Albanian tradition is familiar with the notion of 'amanet', a sort of living will that mainly deals the property and inheritance issues. Such living wills, verbally transmitted, may in certain cases include advance directives regarding end-of-life decisions of the patient including refusal or termination of futile medical treatments. Since these living wills are never formally and legally validated, their application is impossible and treatment refusal remains still non practicable. Tricks to avoid institutional treatment under desperate conditions are used, aiming to provide legal coverage for medical teams and relatives that in extreme situations comply with the advice of withholding senseless treatment. (shrink)

Summary Principles Timely support for patients and people close to them, and effective, sensitive communication are essential. Decisions must be based on the individual patient's circumstances and reviewed regularly. Sensitive advance discussion should always be encouraged, but not forced. Information about CPR and the chances of a successful outcome needs to be realistic. Practical matters Information about CPR policies should be displayed for patients and staff. Leaflets should be available for patients and people close to them explaining about CPR, how (...) decisions are made and their involvement in decisions. Decisions about attempting CPR must be communicated effectively to relevant health professionals. In emergencies If no advance decision has been made or is known, CPR should be attempted unless: the patient has refused CPR; the patient is clearly in the terminal phase of illness; or the burdens of the treatment outweigh the benefits. Advance decision making Competent patients should be involved in discussions about attempting CPR unless they indicate that they do not want to be. Where patients lack competence to participate, people close to them can be helpful in reflecting their views. Legal issues Patients' rights under the Human Rights Act must be taken into account in decision making. Neither patients nor relatives can demand treatment which the health care team judges to be inappropriate, but all efforts will be made to accommodate wishes and preferences. In England, Wales and Northern Ireland relatives and people close to the patient are not entitled in law to take health care decisions for the patient. In Scotland, adults may appoint a health care proxy to give consent to medical treatment. Health professionals need to be aware of the law in relation to decision making for children and young people.IntroductionWhy policies are neededCardiopulmonary resuscitation can be attempted on any person whose cardiac or respiratory functions cease. Failure of these functions is part of dying and thus …. (shrink)

The recent Minnesota case of In re Emergency Guardianship of Albert Barnes illustrates an emerging class of cases where a dispute between a family proxy and a hospital over “medical futility” requires legal resolution. The case was further complicated by the patient’s spouse who fraudulently claimed to be the patient’s designated health care proxy and who misrepresented the patient’s previously expressed treatment preferences. Barnes demonstrates the degree of significant administrative and institutional support to the health (...) care team, ethics consultants, and futility committees that is required when a futility dispute escalates to the need for judicial resolution. An institutional futility policy, especially one that is endorsed by other regional medical centers and organizations, is an important foundation for a hospital that seeks judicial support in a dispute over medical futility in end of life care. (shrink)

ObjectivesTo investigate which of two sources of information about an older adult’s wishes—choices made in an advance directive or proxy’s opinion—provides better insight into the older adult’s preferences measured in hypothetical clinical situations involving decisional incapacity.MethodsSecondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare (...) preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult’s answers in each of the seven scenarios.ResultsEighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios.ConclusionsFindings suggest that a directive might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.Trial registration numberISRCTN89993391; Post-results. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic (...) and health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

Should you wash your hands? -- Are workarounds ethical? -- Turfing, bending, and gaming -- Dirty hands and the semiclear conscience -- Problems of humanity -- Ethics without heroics : foreseeing moral problems in complex systems.

While a national health care system may be greeted with enthusiasm on many grounds, it poses substantial moral problems – not the least of which would be the clash between the ‘standardization’ of care for the sake of efficiency and the needs of individual patients. Such problems are best seen in the treatment of dying patients. Keywords: best buy, cost-saving, dying, efficiency, practice guidelines, Rilke, standards of practice, two tier CiteULike Connotea Del.icio.us What's this?

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter to (...) the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

The health care industry will be a large customer of big data while predictive analytics already underlie important health care and public health initiatives. Yet big data are not benign. For example, data brokers, the businesses that buy, process, and sell “big data” are performing an end-run around health data protection by creating data “proxies” outside of HIPAA-protected space. From 2012-14 various branches of the federal government published five major reports on privacy. All five (...) were in favor of increased regulation of data brokers. However, their recommendations for legislative or regulatory intervention were quite diverse. This essay describes the various proposals and offers a critical synthesis. (shrink)

"A very good book indeed: there is scarcely an issue anyone has thought to raise about the topic which Childress fails to treat with sensitivity and good judgement....Future discussions of paternalism in health care will have to come to terms with the contentions of this book, which must be reckoned the best existing treatment of its subject."--Ethics. "A clear, scholarly and balanced analysis....This is a book I can recommend to physicians, ethicists, students of both fields, and to those (...) most affected--the patients themselves."--Edmund D. Pellegrino, John Carroll Professor of Medicine and Medical Humanities, Georgetown University Medical Center. (shrink)

It has been suggested that focusing on procedures when setting priorities for health care avoids the conflicts that arise when attempting to agree on principles. A prominent example of this approach is “accountability for reasonableness.” We will argue that the same problem arises with procedural accounts; reasonable people will disagree about central elements in the process. We consider the procedural condition of appeal process and three examples of conflicts over coverage decisions: a patients’ rights law in Norway, (...) class='Hi'>health technologies coverage recommendations in the UK, and care withheld by HMOs in the US. In each case a process is at the center of controversy, illustrating the difficulties in establishing procedures that are widely accepted as legitimate. Further work must be done in developing procedural frameworks. (shrink)

Suffering is an unavoidable reality in health care. Not only are patients and families suffering but also the clinicians who care for them. Commonly the suffering experienced by clinicians is moral in nature, reflecting the increasing complexity of health care, their roles within it, and the expanding range of available interventions. Moral suffering is the anguish experienced in response to various forms of moral adversity including moral harms, wrongs or failures, or unrelieved moral stress. Confronting (...) moral adversity challenges clinicians' integrity: the inner harmony that arises when their essential values and commitments are aligned with their choices and actions. The most studied response to moral adversity is moral distress. The sources and sequelae of moral distress, one type of moral suffering, have been documented among clinicians across specialties. Recent interest has expanded to include a more corrosive form of moral suffering, moral injury. Moral resilience, the capacity to restore or sustain integrity in response to moral adversity, offers a path designing individual and system solutions to address moral suffering. It encompasses capacities aimed at developing self- regulation and self-awareness, buoyancy, moral efficacy, self-stewardship and ultimately personal and relational integrity. Moral resilience has been shown to be a protective resource that reduces the detrimental impact of moral suffering. Clinicians and healthcare organizations must work together to transform moral suffering by cultivating the individual capacities for moral resilience and designing a new architecture to support ethical practice. Used worldwide for scalable and sustainable change, the Conscious Full Spectrum Response, offers a method to solve problems to support integrity, shift patterns that undermine moral resilience and ethical practice, and source the inner potential of clinicians and leaders to produce meaningful and sustainable results that benefit all. (shrink)

This article explores the feasibility of using an appeal to the virtues in bioethical analyses, and the difficulties posed by the fact that most virtues and especially hope, are embedded in particular traditions. Whose virtues, then, shall focus our analyses ? A brief description of Christian hope is used to argue that hope does play a major role in various health care venues and to suggest that the common elements in a secular account of the virtues can be (...) found in an unbiased sharing of one's religious background or way of life. (shrink)

The availability of free health care to all citizens has been regarded as a great achievement of the Soviet society. In recent decades, however, decreased funding of the state-run health care system has led to a deterioration in the quality and quantity of available medical equipment and services. More than 50 percent of the Russian population is dissatisfied with the health care system and the attitudes and moral standards of their health care (...) providers. This article discusses the degree, nature, and some of the causes of the public's dissatisfaction and concludes with a preliminary look toward the future of the Russian health care system. (shrink)

Neural tube defects (NTDs) are very serious malformations for the fetus, causing either low life expectancy or a chance of survival only with costly and difficult surgical interventions. In western countries the average prevalence is 1/1000-2000 and in Turkey it is 4/1000. The aim of the study was to characterize ethical approaches at institutional level to the fetus with an NTD and the mother, and the role of health care professionals in four major centers in Turkey. The authors (...) chose perinatology units of four university hospitals and prepared questionnaires for the responsible professionals concerning their own and their institution’s ethical approaches to the fetus with an NTD and the mother. The investigation revealed that there were no institutional ethical frameworks or ethics committees available to professional teams in the units. The roles of the health care professionals and their individual decisions and approaches based on ethical principles are described. The ethical decision-making process concerning fetuses with NTDs, examples of institutional approaches to the topic and institutional frameworks, and the role of nurses and other health care professionals are all discussed, based on a literature review. The authors suggest that institutional ethical frameworks, ethics committees, professionals’ ethics education and multidisciplinary teamwork should be established for critical situations such as fetuses with an NTD. (shrink)

Medical tourists, persons that travel across international borders with the intention to access non-emergency medical care, may not be adequately informed of safety and ethical concerns related to the practice of medical tourism. Researchers indicate that the sources of information frequently used by medical tourists during their decision-making process may be biased and/or lack comprehensive information regarding individual safety and treatment outcomes, as well as potential impacts of the medical tourism industry on third parties. This paper explores the feedback (...) from former Canadian medical tourists regarding the use of an information sheet to address this knowledge gap and raise awareness of the safety and ethical concerns related to medical tourism. (shrink)