Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care (...) class='Hi'>planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%).Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for patient (...) autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self-defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients’ advance care plans. (shrink)

Background:Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.Aim:To explore the view of people in the early stage of dementia on planning for future care.Research design:The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research context:Dementia nurses assisted in the recruiting of people with dementia (...) for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerations:People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.Findings:The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.Discussion:High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.Conclusion:The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Advance Care Planning, of which Advance directive is only a part, is a process of planning for future medical care under circumstances of impaired decisional capacity. Advance care planning involves a structured discussion between patient and ideally their primary care physician to explore the goals of care in the context of current and hypothetical illness states, discusses treatment options in the context of these goals of care and finally articulates and (...) docu- ments treatment and care preferences of the patient.1 Advance care planning should be a routine part of preventive health care in order to avoid unneces- sary extra ordinary measures against a person’s wishes and to reserve resources which are wasted in futile care. Instead advance care planning is either non-existent or severely under-utilized in primary care practice in Pakistan. The author explores the factors that prevent Pakistani physicians’ from incorporating advance care planning into practice. In addition to this, various steps in terms of the principles, policies and procedures are discussed which could help physicians and institutions navigate the advance care planning process. (shrink)

Background Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. Objective To explore participants’ experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. Research design This qualitative descriptive study used the focus (...) group interview method. Data were analyzed using qualitative content analysis. Participants and research context A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. Ethical considerations This study was approved by the Ethical Review Committee of Tokyo Women’s Medical University (no. 4723) and Kyoto University (no. R2099). Findings Five main themes were extracted: discussing one’s thoughts with others in a considerate manner, reflecting on one’s way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about “what if” topics, and turning one’s eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. Conclusions The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values. (shrink)

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial (...) of values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (shrink)

The purpose of advance care planning is to allow an individual to maintain autonomy in end-of-life medical decision-making even when incapacitated by disease or terminal illness. The intersection of EOL medical technology, ethics of EOL care, and state and federal law has driven the development of the legal framework for advance directives. However, from an ethical perspective the current legal framework is inadequate to make ADs an effective EOL planning tool. One response to this flawed AD (...) process has been the development of Physician Orders for Life Sustaining Treatment. POLST has been described as a paradigm shift to address the inadequacies of ADs. However, POLST has failed to bridge the gap between patients and their autonomous, preferred EOL care decisions. Analysis of ADs and POLST reveals that future policy should focus on a communications-based approach to ACP that emphasizes ongoing interactions between healthcare providers and patients to optimize EOL medical care to the individual patient. (shrink)

Background A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. Objectives To examine to what extent engagement in advance care planning practices, knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. Design Survey study. Participants/setting The study involved a purposive sample (...) of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels, as part of a cluster randomized controlled trial. Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated. After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations and documented advance care planning ; differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses ; 95% confidence interval 0.08–0.17; p < 0.001) and allied staff scoring higher than care assistants. We found no significant differences regarding self-efficacy. Discussion While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. Conclusions Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage. (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential (...) benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (shrink)

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how (...) family members’ participation and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences. (shrink)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use of (...) advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (shrink)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use of (...) advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (shrink)

Ford, Norman This is an article to introduce readers to the issue of people planning their options for future health care and medical treatment, and the importance of taking it seriously and acting on it.

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP (...) conversations. In November 2020, seven databases were searched to select papers for inclusion. This search was updated in December 2021. The search strategy consisted of three tiers, intersected by using the Boolean term “AND,” and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics emerged clustered around two themes. This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences. (shrink)

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better‐informed decisions has led to the development of dementia‐specific advance directives, in which people are given tools to help them communicate what their preferences are while they (...) are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia‐specific directives and addresses some of the criticisms raised about them. (shrink)

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were (...) analyzed thematically. Study findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as “child play,” it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions. (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)

This study is an ethical reflection on the formulation and application of public policies regarding reproductive health in Brazil. The Integral Assistance Program for Women's Health (PAISM) can be considered advanced for a country in development. Universal access for family planning is foreseen in the Brazilian legislation, but the services do not offer contraceptive methods for the population in a regular and consistent manner. Abortion is restricted by law to two cases: risk to the woman's life and rape. This (...) reality favors the practice of unsafe abortion, which is the third largest cause of maternal death in Brazil. Legal abortion is regulated by the State and the procedure is performed in public health centers. However, there is resistance on the part of professionals to attend these women. Prenatal care is a priority strategy for promoting the quality of life of these women and of future generations. Nonetheless, it is still difficult for these women to access the prenatal care services and to have the required number of consultations. Moreover, managers and health professionals need to be made aware of the importance of implementing the actions indicated by the public policies in the area of sexual and reproductive health, favoring respect for autonomy in a context of personal freedom. (shrink)

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science‐driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be (...) applied to all, individual patients are treated as population‐level groups—as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision‐making process by allowing for the incorporation of a variety of methods of advance care planning. (shrink)

ABSTRACT This study is an ethical reflection on the formulation and application of public policies regarding reproductive health in Brazil. The Integral Assistance Program for Women's Health (PAISM) can be considered advanced for a country in development. Universal access for family planning is foreseen in the Brazilian legislation, but the services do not offer contraceptive methods for the population in a regular and consistent manner. Abortion is restricted by law to two cases: risk to the woman's life and rape. (...) This reality favors the practice of unsafe abortion, which is the third largest cause of maternal death in Brazil. Legal abortion is regulated by the State and the procedure is performed in public health centers. However, there is resistance on the part of professionals to attend these women. Prenatal care is a priority strategy for promoting the quality of life of these women and of future generations. Nonetheless, it is still difficult for these women to access the prenatal care services and to have the required number of consultations. Moreover, managers and health professionals need to be made aware of the importance of implementing the actions indicated by the public policies in the area of sexual and reproductive health, favoring respect for autonomy in a context of personal freedom. (shrink)

Following Bratman, I distinguish between the Cummins or component-function of the planning capacity (its role as a component of larger forms of practical organizations) and its Wright or existence-function – the planning capacity's effect that explains its existence. I agree with Bratman that these functions are distinct. The planning capacity's role within larger practical organizations need not explain its origin. But I argue that the distinction is less stark for future-oriented existence-functions, which concern the future (...) persistence and stability of the capacity. In mature practical organizations, component-functions usually give rise to matching future-oriented existence-functions, given that pressures for the persistence of practical organizations transfer to their components (such as the planning capacity) because of their component-functions. But in the special case of individual temporally extended agency, there is an even stronger alignment of functions. The planning capacity and individual temporally extended agency are part of an inextricable package. The capacity is not just a distinct component. This entails that, within individual agency, the two functions merge and the planning capacity is the primary rather than the derivative target of pressures of persistence, care, and value. Or so I speculatively conjecture. (shrink)

We argue that we have obligations to future people that are similar in kind to obligations we have to current people. Modifying Michael Bratman’s account, we argue that as planning agents we must plan for the future to act practically in the present. Because our autonomy and selfhood are relational by nature, those plans will involve building affiliative bonds and caring for others. We conclude by grounding responsibility to future others by the way we plan through (...) our social institutions. Our account fills out the story of responsibility to future generations by referring only to ourselves, our practical identities, and practical reason. (shrink)

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what (...) they might consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment (...) to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

This article explores traditional views of advance care planning in the broader context of advance personal planning, which also accounts for legal and financial matters. Criticisms of existing processes are noted, while the significance of interprofessional collaboration is highlighted. Reframing the purpose of advance personal planning as planning for the rest of life, rather than the end-of-life, and adopting a more holistic perspective informed by theory may help individuals to view advance personal planning as (...) a routine, preventative exercise that safeguards their autonomy and well-being. Both lawyers and healthcare providers have an important role to play in reframing the purpose of advance personal planning. This revised approach is underpinned by the unification of two separate theoretical lenses: Preventive Law Theory and Therapeutic Jurisprudence. This combination enhances our understanding of what it means for people to truly achieve “the good result” (Holtz 2017) when planning ahead for their future legal, financial, health, and personal interests. Preventive Law Theory encourages an ongoing, collaborative relationship between lawyers and their clients, or healthcare providers and their patients, while Therapeutic Jurisprudence ensures an ethical approach to advance personal planning that accounts for all aspects of the individual’s well-being, including consideration of vulnerability, autonomy, and empowerment. (shrink)

Herbert, Dilinie As part of the Inquiry into End of Life Choices, commissioned by the Victorian State Government on 7 May 2015, members of the community were invited to share their attitudes towards assisted dying by written submissions. The Inquiry also hosted a panel discussion with a few selected respondents. The final report prepared by the Inquiry is a comprehensive document that identified common themes relating to the benefits and concerns about a possible assisted dying framework. Some respondents used the (...) opportunity to advocate in favour of palliative care services and advance care planning. There were other respondents that were apprehensive about possible changes to the law and wary that it could incite permissible practices of assisted death in Victoria which are in contradiction to existing ethical beliefs, values and norms. Their anxiety was in relation to a potential slippery slope effect of these laws in the future. In this article I will explore how the slippery slope effect has been used to criticise euthanasia legislation, using data from the Netherlands. Although there are indications that the slippery slope is apparent in the Netherlands, there are also contrary indications that are otherwise open for interpretation. I propose that the Inquiry was a valuable opportunity to reflect on community attitudes towards assisted death and that the recommendations to better resource palliative care services, is a positive outcome. (shrink)

Recently implemented Chinese health insurance schemes have failed to achieve a Chinese health care system that is family-oriented, family-based, family-friendly, or even financially sustainable. With this diagnosis in hand, the authors argue that a financially and morally sustainable Chinese health care system should have as its core family health savings accounts supplemented by appropriate health insurance plans. This essay’s arguments are set in the context of Confucian moral commitments that still shape the background culture of contemporary China.

In 2017, Americans spent over $3.4 trillion-nearly 18% of gross domestic poduct-on health care. This spending is unevenly distributed: Almost a quarter is spent on the costliest 1% of patients, and almost half on the costliest 5%. Most of these patients soon return to a lower percentile, but many continue to incur health care costs in the top percentiles year after year. This Article focuses on the challenges that persistently expensive patients present for health law and policy, and (...) how fairly dividing their medical costs among payers illuminates fundamental normative choices about the design and reform of health insurance. In doing so, this Article draws on bioethical and health policy analyses of the fair distribution of medical costs, and examines how legal doctrine shapes health systems' options for responding to expensive patients. Part I of this Article discusses two real-world examples of expensive patients and the debate surrounding them, including the case of an Iowa teenager with hemophilia whose treatments cost more than $10 million per year. Part II then examines the normative question of how the costs of treating expensive patients' medical conditions should be shared and identifies three different dimensions of sharing: (1) scope, from narrow (plan members only) to broad (all of society); (2) boundedness, whether there are limits on the costs others can be asked to bear; and (3) progressivity, whether wealthier individuals are asked to bear more costs (similar to progressivity in tax). Part III then considers how health care reform choices could advance or hamper the adoption of broad, bounded, progressive sharing, with a focus on recent state-level reinsurance programs that legal scholarship has not yet analyzed in depth. -/- This Article contributes to the literature on health care reform in three interlocking ways. First, it develops a novel proposal for fairly sharing the cost of expensive patients' care that could usefully inform state- and federal-level policy discussions. Second, it provides a normative, rather than purely political or economic, analysis of existing and proposed options for sharing expensive patients' costs. Third, it bridges the disconnected literature on reinsurance, limit setting, and health care financing, identifying how proposals in these different areas intersect. (shrink)

The Australian state of Victoria introduced new legislation regulating medical treatment and associated decision-making in March 2018. In this article we provide an overview of the new Medical Treatment Planning and Decisions Act 2016 and compare it to the former Medical Treatment Act 1988. Most substantially, the new Act provides for persons with relevant decision-making capacity to make decisions in advance regarding their potential future medical care, to take effect in the event they themselves do not have (...) decision-making capacity. Prima facie, the new Act enshrines autonomy as the pre-eminent value underlying the state’s approach to medical treatment decision-making and associated surrogate decision-making. However, we contend that the intention of the Act may not accord with implementation of the Act to date if members of the community are not aware of the Act’s provisions or are not engaged in advance care planning. There is a need for further research, robust community advocacy, and wider engagement for the intention of the Act—the promotion of “precedent autonomy” in respect to surrogate medical treatment decision-making—to be fully realized. (shrink)

This book examines the relevance of modern medicine and healthcare in shaping the lives of elderly persons and ageing societies. Combining individual and social dimensions, Planning Later Life discusses the ethical, social, and political consequences of increasing life expectancies and demographic change in the context of biomedicine and public health. By focusing on the field of biomedicine and healthcare, the authors engage readers in a dialogue on the ethical and social implications of recent trends in dementia research and (...) class='Hi'>care, advance healthcare planning, or the rise of anti-ageing medicine and prevention. Bringing together the largely separated debates of individualist bioethics on the one hand, and public health ethics on the other, the volume deliberately considers the entanglements of envisioning, evaluating, and controlling individual and societal futures. The process of devising and exploring the various positive and negative visions and strategies related to later life is rarely reflected systematically from a philosophical, sociological, and ethical point of view. As such, this book will be crucial to those working and studying in the life sciences, the humanities, and the social sciences, particularly in the areas of bioethics, social work, gerontology and aging studies, healthcare and social service, sociology, social policy, and geography and population studies. (shrink)

The article analyzes the project of scientific justification of language Reforms, realized by the Soviet regime in 20s and 30s, elaborated by Russian and Soviet linguist Evgenij Polivanov (1891-1938). Polivanov claims that a Soviet linguist should not limit his interests to the “general linguistics" and become an active “language builder" and “language politician". The reforms should be carefully planned by the experts in language sciences who master as well the methodology of dialectical materialism. In the polemics against Nikolai Marr's Japhetidology (...) Polivanov argued that linguistics is a strict science and its deductions are not contradictory to Marxism, as the latter is primarily a materialist philosophy. His minimal program consisted in explaining his views on the evolution of language in the Marxist terms. The evolution of language is explained by the influence of internal and external factors. The socio-economical factors are not influencing the language in a direct manner, but their analysis allows to change the channel of language evolution. According to Polivanov, the introduction of Marxism into linguistics will make possible to explain the relationship between intralinguistic and extralinguistic factors and will transform the sciences of language into “social engineering of the future". (shrink)

BackgroundThe global interest in developing therapies for Ebola infection management and its prevention is laudable. However the plan to conduct an emergency immunization program specifically for healthcare workers using experimental vaccines raises some ethical concerns. This paper shares perspectives on these concerns and suggests how some of them may best be addressed.DiscussionThe recruitment of healthcare workers for Ebola vaccine research has challenges. It could result in coercion of initially dissenting healthcare workers to assist in the management of EVD infected persons (...) due to mistaken beliefs that the vaccine offers protection. It could also affect equity and justice. For example, where people who are not skilled health care professionals but who provide care to patients infected with Ebola are not prioritized for vaccination. The possibility of study participants contracting Ebola infection despite the use of experimental vaccine, and the standard of care they would receive, needs to be addressed clearly, transparently and formalized as part of the ethics review process. Future access to study products in view of current status of the TRIPS agreement needs to be addressed. Finally, broad stakeholder engagement at local, regional and international levels needs to be promoted using available communication channels to engage local, regional and international support. These same concerns are applicable for current and future epidemics.SummarySuccessful Ebola vaccine development research requires concerted efforts at public dialogue to address misconceptions, equity and justice in participant selection, and honest discussions about risks, benefits and future access. Public dialogue about Ebola vaccine research plans is crucial and should be conducted by trusted locals and negotiated between communities, researchers and ethics committees in research study sites. (shrink)

There have always been medical standards of care in the American health-care sector. However, never before have they been so deeply incorporated in the delivery of health care as they are today. With the increased delivery of care through integrated delivery systems, as well as the development of the computerized patient record, medical standards of care are now used in innovative ways by providers and health plans in delivering health care to individual patients. There (...) is great potential for even more innovative uses of medical standards of care in the future.This article first presents a taxonomy of the medical standards of care that are involved in health-care delivery today Next, the article traces the historical evolution of medical standards of care since the early 1980s. Included in this discussion are the origins of the standard-setting movement as well as the developments that led to the way standards of care are currently used by large institutional providers and managed care plans to improve the quality of their health-care services. The article concludes with a brief analysis of the key legal issues that affect how standards of care can be used to improve the health care of patients. (shrink)

Theory of health care ethics -- Principles of health care ethics -- The moral status of gametes and embryos : storage and surrogacy -- The ethical challenges of the new reproductive technology -- Ethics and aging in America -- -- Healthcare ethics committees : roles, memberships, structure, and difficulties -- Ethics in the management of health information systems -- Technological advances in health care : blessing or ethics nightmare? -- Ethics and safe patient handling and mobility -- (...) Spirituality and healthcare organizations -- A new era of health care : the ethics of healthcare reform -- Health inequalities and health inequities -- The ethics of epidemics -- Ethics of disasters : planning and response -- Domestic violence : changing theory, changing practice -- Looking toward the future. (shrink)

Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, (...) little is known about what affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia. (shrink)

Should you care less about your distant future? What about events in your life that have already happened? How should the passage of time affect your planning and assessment of your life? Most of us think it is irrational to ignore the future but harmless to dismiss the past. But this book argues that rationality requires temporal neutrality.

There have always been medical standards of care in the American health-care sector. However, never before have they been so deeply incorporated in the delivery of health care as they are today. With the increased delivery of care through integrated delivery systems, as well as the development of the computerized patient record, medical standards of care are now used in innovative ways by providers and health plans in delivering health care to individual patients. There (...) is great potential for even more innovative uses of medical standards of care in the future.This article first presents a taxonomy of the medical standards of care that are involved in health-care delivery today Next, the article traces the historical evolution of medical standards of care since the early 1980s. Included in this discussion are the origins of the standard-setting movement as well as the developments that led to the way standards of care are currently used by large institutional providers and managed care plans to improve the quality of their health-care services. The article concludes with a brief analysis of the key legal issues that affect how standards of care can be used to improve the health care of patients. (shrink)

The commentaries in response to our feature paper1 are indicative of the varied perspectives that can be taken towards artificial amnion and placenta technology (AAPT) and more specifically its relationship with pregnancy (loss). Kennedy rightly argues that empirical research is essential for understanding the experiences of pregnancy loss and AAPT2 and our own advocacy of empirical research is evident in previous work.3–5 Kennedy also acknowledges the current impossibility of researching AAPT experiences since it has not yet been applied in clinical (...) settings. It is precisely for this reason that we draw on the reported experiences of neonatal intensive care (NICU) parents since they present the closest analogy which can be drawn with the technology.1 What we reject in Kennedy’s response, however, is the claim that the experiences of NICU parents have been ‘exploited’ by us.2 Studies documenting the experiences of NICU parents were drawn on to indicate that our considerations are more than mere speculation. As stated, the experiences of NICU parents, particularly the pregnant individual who experiences pregnancy loss, are the closest indication we have of how AAPT and what it entails may be experienced. To claim that this data is being exploited by us is to undermine the very purpose that such research is undertaken—to indicate how future care may be improved. It would be much more harmful to not use this information. While we believe that experiences of …. (shrink)

ABSTRACT To bring attention to medical ethics and to enhance the quality of health care in Iran, the Ministry of Health and Medical Education has introduced a strategic plan for medical ethics at a national level. This plan was developed through the organization and running of workshops in which experts addressed important areas related to medical ethics. They analysed strengths and weaknesses, opportunities and threats, and outlined a vision, a mission and specific goals and essential activities surrounding medical ethics. (...) The current strategic plan has six main goals that will be reviewed in this paper. Some major activities that were carried out in recent years, and some future plans, will be also reviewed. (shrink)

Humanity has reached a critical moment. Our world is unsettled and rapidly changing, and we face existential risks over the next century. Various outcomes--good and bad--are possible. Yet our approach to the future is characterized by short-term thinking, polarizing debates, alarmist rhetoric, and pessimism. In this short, exhilarating book, renowned scientist and bestselling author Martin Rees argues that humanity's prospects depend on our taking a very different approach to planning for tomorrow. The future of humanity is bound (...) to the future of science and hinges on how successfully we harness technological advances to address our challenges. If we are to use science to solve our problems while avoiding its dystopian risks, we must think rationally, globally, collectively, and optimistically about the long term. Advances in biotechnology, cybertechnology, robotics, and artificial intelligence--if pursued and applied wisely--could empower us to boost the developing and developed world and overcome the threats humanity faces on Earth, from climate change to nuclear war. At the same time, further advances in space science will allow humans to explore the solar system and beyond with robots and AI. But there is no "Plan B" for Earth--no viable alternative within reach if we do not care for our home planet. Rich with fascinating insights into cutting-edge science and technology, this accessible book will captivate anyone who wants to understand the critical issues that will define the future of humanity on Earth and beyond."-- Provided by publisher. (shrink)

Health care institutions, including Roman Catholic institutions, are in a time of crisis. This crisis may provide an important opportunity to reinvigorate Roman Catholic health care. The current health care crisis offers Roman Catholic health care institutions a special opportunity to rethink their fundamental commitments and to plan for the future. The author argues that what Catholic health care institutions must first do is articulate the nature of their identity and their commitments. By a (...) renewed commitment to the praxis of health care on their own distinctive terms, Roman Catholic health care institutions may reestablish a vision of human nature and human service in an increasingly secular society. Health care could then reclaim its place as a powerful setting for the expression of Roman Catholic faith, life and witness. (shrink)

Alasdair MacIntyre and Richard Rorty, in their different ways, have represented the tension between acculturation and individuation, truth and freedom, as central to modern education systems, a tension which, both agree, they have failed to resolve. The paper argues that an additional complication is that in the contemporary postmodern landscape, which prioritises the notion of lifelong learning in its policy discourse, the very notion of education is threatened, and asks whether we should care. It considers MacIntyre’s suggestion that the (...) notion of the educated public can solve the former tension and concurrently re-launch the notion of education in the postmodern world—central to MacIntyre’s plan is the reform of the university. And against it Rorty’s suggestion that acculturation and individuation be regarded as different but connected processes, with individuation conceived as self-creation and located in the non-vocational university. (shrink)

In the majority of academic institutions nursing and medical students receive a traditional education, the content of which tends to be specific to their future roles as health care professionals. In essence, each curriculum design is independent of each course. Over the last decade, however, interest has been accumulating in relation to interprofessional and multiprofessional learning at student level. With the view that learning together during their student training would not only encourage and strengthen future collaboration in (...) practice settings but also enhance patient care, the University of Dundee decided to run a pilot study to explore shared teaching in ethics between medical and nursing students. This article presents a report on the reasons for selecting health care ethics as a precursor for shared teaching, the educational tool used for the sessions, and the results of student and facilitator evaluation of the short course. Overall, despite problems such as poor attendance by some students, and facilitation and timetable difficulties, most of the feedback from students and facilitators has been positive. In essence the ‘idea’ has gone from strength to strength and there are now three levels of shared teaching in ethics between nursing and medical students, with plans to include further sessions with students from other disciplines. Within the text, ‘health care ethics’ will be referred to as ‘ethics’; nursing students/nurses encompasses midwifery students/midwives. (shrink)

In the face of mounting criticism against advance directives, we describe how a novel, computer-based decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future , translates an individual's values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by (1) educating users about advance care planning; (2) helping individuals (...) identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; (3) explaining common end-of-life medical conditions and life-sustaining treatment; (4) helping users articulate a coherent set of wishes with regard to advance care planning—in the form of an advance directive readily interpretable by physicians; and (5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and health care providers in discussions about advance care planning. (shrink)

This paper discusses Foucault’s analyses of the rise of the entrepreneur in the second half of the 20th century. Whereas Foucault based his conclusions on readings of economic theory, we propose here to look at “practical texts,” i.e. entrepreneurship guidebooks, in the way Foucault himself did in his research on antiquity. We also mobilize Foucauldian concepts from his lectures on the “Care of the Self” and the “Hermeneutics of the Subject” to account for our empirical observations. By comparing two (...) series of entrepreneurship guidebooks issued by the US government in the mid-1940s and the late 1950s-1975, we argue that a major shift occurred between these two periods. In the 1940s, the future was supposed to be meditated upon: entrepreneurs were incited to mentally consider the dangers of running a business, and they were given mental techniques, along with basic paper technologies (e.g. checklists), in order to do so. A bit more than a decade later and for the decades to follow, entrepreneurs were told to plan their new businesses thoroughly, and thus to devise their future; they were provided with more advanced paper technologies (accounting technologies and business plan templates). The future was no more an object of meditation: it had become a methodical project. (shrink)

In an analysis of artificially intelligent systems for medical diagnostics and treatment planning we argue that patients should be able to exercise a right to withdraw from AI diagnostics and treatment planning for reasons related to (1) the physician’s role in the patients’ formation of and acting on personal preferences and values, (2) the bias and opacity problem of AI systems, and (3) rational concerns about the future societal effects of introducing AI systems in the health (...) class='Hi'>care sector. (shrink)

Debates over health care have focused for so long on economics that the proper goals for medicine seem to be taken for granted; yet problems in health care stem as much from a lack of agreement about the goals and priorities of medicine as from the way systems function. This book asks basic questions about the purposes and ends of medicine and shows that the answers have practical implications for future health care delivery, medical research, and (...) the education of medical students. The Hastings Center coordinated teams of physicians, nurses, public health experts, philosophers, theologians, politicians, health care administrators, social workers, and lawyers in fourteen countries to explore these issues. In this volume, they articulate four basic goals of medicine — prevention of disease, relief of suffering, care of the ill, and avoidance of premature death — and examine them in light of the cultural, political, and economic pressures under which medicine functions. In reporting these findings, the contributors touch on a wide range of diverse issues such as genetic technology, Chinese medicine, care of the elderly, and prevention and public health. The Goals of Medicine clearly demonstrates the importance of clarifying the purposes of medicine before attempting to change the economic and organizational systems. It warns that without such examination, any reform efforts may be fruitless. (shrink)

Background Forward-looking, democratically oriented governance is needed to ensure that human genome editing serves rather than undercuts public values. Scientific, policy, and ethics communities have recognized this necessity but have demonstrated limited understanding of how to fulfill it. The field of bioethics has long attempted to grapple with the unintended consequences of emerging technologies, but too often such foresight has lacked adequate scientific grounding, overemphasized regulation to the exclusion of examining underlying values, and failed to adequately engage the public. Methods (...) This research investigates the application of scenario planning, a tool developed in the high-stakes, uncertainty-ridden world of corporate strategy, for the equally high-stakes and uncertain world of the governance of emerging technologies. The scenario planning methodology is non-predictive, looking instead at a spread of plausible futures which diverge in their implications for different communities’ needs, cares, and desires. Results In this article we share how the scenario development process can further understandings of the complex and dynamic systems which generate and shape new biomedical technologies and provide opportunities to re-examine and re-think questions of governance, ethics and values. We detail the results of a year-long scenario planning study that engaged experts from the biological sciences, bioethics, social sciences, law, policy, private industry, and civic organizations to articulate alternative futures of human genome editing. Conclusions Through sharing and critiquing our methodological approach and results of this study, we advance understandings of anticipatory methods deployed in bioethics, demonstrating how this approach provides unique insights and helps to derive better research questions and policy strategies. (shrink)