Autonomy In Health Care Research Articles

Attitudes Toward Advance Directives Among Patients and Their Family Members in China

ObjectivesChinese people are generally unfamiliar with the concept of advance care planning or advance directives (ACP/ADs), which raises dilemmas in life-support choice and can even affect clinical decision making. To understand and address the issues involved better, we investigated the awareness of ACP/ADs in China, as well as people's attitudes toward medical autonomy and end-of-life care. DesignA multicenter cross-sectional survey, conducted from August 1 to December 31, 2016. SettingTwenty-five hospitals located in 15 different provinces throughout mainland China. ParticipantsPairs of adult patients without dementia or malignancies, and a family member. MeasurementsParticipants self-filled anonymous questionnaires, and the data collected were analyzed to relate patients' sociodemographic characteristics to their awareness of ACP/ADs and attitudes to health care autonomy and end-of-life care. ResultsAmong 1084 patients who completed the questionnaire, 415 (38.3%) had heard about ACP/ADs. Having been informed about ACP/ADs, 995 (91.8%) were willing to find out their true health status and decide for themselves; 549 (50.6%) wanted to institute ACP/ADs. Regarding end-of-life care, 473 (43.6%) chose Do Not Resuscitate, and 435 (40.1%) wished to forgo life-support treatment if irreversibly moribund. Patients predominantly (481, 44.4%) chose general hospital as their preferred place to spend their last days of life; only 114 (10.5%) favored a special hospice facility. Patients' main concerns during end-of-life care were symptom control (35.1%), followed by functional maintenance and quality of life (29.8%), and prolonging life (18.9%). More highly educated patients had significantly greater awareness of ACP/ADs than less well educated ones (χ2 = 59.22, P < .001) and were more willing to find out the truth for themselves (χ2 = 58.30, P ≤ .001) and make medical decisions in advance (χ2 = 55.92, P < .001). Younger patients were also more willing than older ones to know the truth (χ2 = 38.23, P = .001) and make medical decisions in advance (χ2 = 18.42, P = .018), and were also more likely to wish to die at home (χ2 = 96.25, P < .001). Only 212 patients’ family members (19.6%) wanted life-support treatment for themselves if irreversibly moribund, whereas 592 (54.6%) would want their relative to receive such procedures in the same circumstances; a similar discrepancy was evident for end-of-life invasive treatment (18.3% vs 42.7%). ConclusionsAwareness about ACP/ADs in China is still low. Providing culturally sensitive knowledge, education, and communication regarding ACP/ADs is a feasible first step to promoting this sociomedical practice.

‘We can only request what's in our protocol’: technology and work autonomy in healthcare

This article explores the tension between standardization and autonomy raised by the implementation of new technology in healthcare organizations. The theoretical frame of this study is grounded in the impact of new technologies on work organization, routinization and autonomy across settings. Empirically it presents evidence from twoNHSTrusts in England that implemented a national Electronic Patient Record (EPR). The paper aims to reinvigorate the debate on the tension between standardization and autonomy in professional workplaces such as healthcare. It argues that the implication of technology in professional work conditions processes of task routinization that constrain autonomy, and enables reallocation of discretion between professional groups. We argue that routinization is not restricted to low‐skill work but may travel across contexts and be evidenced in high‐skill work environments. The interplay between routinization and autonomy is also useful in drawing insights concerning the dynamics of change that occur in professional work.

Toward an Account of Relational Autonomy in Healthcare and Treatment Settings

Currently held conceptions of autonomy that inform biomedicine are inadequate and oppressive. Liberal notions of individualism are anti-humanist and constitute pernicious socialization, which leads to internalized oppression and dehumanization, especially among already oppressed groups. Women in recovery from addiction and other mental illnesses are especially affected by anti-humanist conceptions of autonomy. I argue that these women need to receive treatment that supports autonomy through supplementing psychiatric and rehabilitative therapy with humanistic education and group therapy. Treatment must encourage the construction of healthy social interaction that augments a sense of supported autonomy.

Historical analysis of personal autonomy for prospective healthcare

Background: Today most healthcare providers have embraced the principle of personal autonomy as central to their strategic aims and objectives. However, amongst healthcare providers there exist many different views on what personal autonomy is and how it should be facilitated. Objectives: This study aims to explore how personal autonomy and related concepts such as individual liberty and individualism have been interpreted over theages, what this means for our current understanding of personal autonomy in healthcare and how this may aid current policy discussions.Methods: Qualitative investigation of historical views related to this topic. Results: Three major traditions can be identified, each of which defines preconditions for autonomous behavior. These preconditions are: (1) rationality and rational faculties, (2) individual rights and legislation and (3) free property rights, free market and free trade. It was found that the three historical traditions still play a key role in current discussions on personal autonomy in healthcare. Conclusions: A thorough understanding of these traditions may be quite helpful for health stakeholders in planning health services and policies.

Individual and community levels of maternal autonomy and child undernutrition in India.

Investigate the relationship between maternal autonomy at multiple levels and the risk of child stunting, underweight, and wasting in India. Data were from a 2005-2006 nationally representative, cross-sectional sample of 51,555 children under 5years from 29 states in India. Multilevel, multivariable, logistic regression analyses were used to estimate the odds of child stunting, underweight, and wasting in relation to maternal autonomy in healthcare, movement, and money at the individual level and community level, while adjusting for several child, maternal, and household factors. When only adjusting for child age and sex, children in communities with a high proportion of women with autonomy in healthcare, or movement, or money, separately, had a lower risk of being stunted, underweight, or wasted, separately. However, adjusting for other explanatory factors attenuated these relationships and made them statistically insignificant. Individual maternal autonomy in any of the three domains was not associated with any of the outcomes. The results suggest that caution should be taken when interpreting the direct relevance of maternal autonomy at both individual and community levels to measures of child undernutrition.

Policy and Ethical Obligation for Postpartum Sterilization

Underserved women face many barriers in their attempt to access postpartum tubal ligation as a means of contraception. The Federal policy regarding Medicaid sterilization funding hinders these women from exercising the same degree of reproductive healthcare autonomy as their more socio-economically advantaged counterparts. The two main barriers are 1) The Medicaid form must be signed 30-180 days prior to the procedure and brought to the hospital on the procedure day and 2) The reading level and design of the consent form is not appropriate for the patient population. In addition to the consent form that needs to be signed and verified before the procedure, other barriers include the age of the woman, in which some hospitals restrict sterilization procedures to woman who are more than 30 years of age, even though Medicaid funds sterilization for woman over 21 years of age. Additional restrictions arise when obstetric care is provided by Catholic affiliated hospitals where sterilization is not permitted, and any health care institution reporting a shortage of operating room facilities or resources. We suggest there is urgent need to revise Federal sterilization regulations in support of clinical and legal practice that adheres to ethical standards of medical practice.

Adolescent autonomy revisited: clinicians need clearer guidance

In 1996, Brazier and Bridge raised the question ‘is adolescent autonomy truly dead and buried’ following judicial decisions which had seemed to reverse the Gillick-inspired trend for greater child autonomy...

Women's Autonomy and Skilled Attendance During Pregnancy and Delivery in Nepal.

Objectives This study aims to explore the association between women's autonomy and skilled attendance during pregnancy and delivery in Nepal. Methods We adopt data from the Nepal Demographic and Health Survey(NDHS,2011). We include only married women who gave birth in the 5years preceding the survey (N=4148). Women's autonomy was assessed on the basis of four indicators of decision making: healthcare, visiting friends or relatives, household purchases and spending earned money. Each indicator was dichotomized (yes/no) and then summarized into a single variable to measure overall autonomy. Next, we measured health attendance (skilled vs. unskilled) during antenatal and delivery care. The association between women's autonomy and skilled attendance was analysed using a logistic regression model. Results Most women had a medium (40%) and high (35%) level of overall autonomy. The proportion of women accessing skilled providers during antenatal and delivery care was 51 and 36%. Women with autonomy in healthcare, visiting friends or relatives, making household purchases and spending money earned were associated with a higher likelihood of receiving care from skilled providers during antenatal care and delivery. An elevated probability of access to skilled attendance during antenatal (aOR 1.33; 95% CI 1.10-1.59) and delivery care (aOR 1.38; 95% CI 1.12-1.70) was reported among women with higher levels of overall autonomy. Conclusion Women's autonomy was significantly associated with the maternal health care utilization by skilled attendants. This study will provide insights for policy makers to develop strategies in improving maternal health.

Enhancing Self-Determination in Health: Results of an RCT of the Ask Project, a School-Based Intervention for Adolescents with Intellectual Disability.

Adolescents with intellectual disability have high levels of unrecognized disease and inadequate health screening/promotion which might be addressed by improving health advocacy skills. A parallel-group cluster randomized controlled trial was conducted to investigate whether a health intervention package, consisting of classroom-based health education, a hand-held health record and a health check, increased carer-reported health advocacy in adolescents with intellectual disabilities. Carers of 388 adolescents responded. Adolescents allocated to receive the health intervention package were significantly more likely to go to the doctor on their own, ask questions and explain their health problems to the doctor without help. Carers reported their adolescent had benefited, gaining increased knowledge and responsibility for their own health. They themselves reported an increase in knowledge and better ability to support the young person. An educational initiative based on the Ask Health Diary led to improved healthcare autonomy for adolescents with intellectual disabilities.

Politically Correct Eugenics

Eugenics is a loaded word bringing to mind the horrors of Nazi Germany and here in the United States, our history of forced sterilizations. In Buck v. Bell, Justice Holmes upheld a sterilization law declaring that “three generations of imbeciles are enough.” Although eugenics has a negative connotation, family balancing (the term of art coined to refer to those who use preimplantation genetic diagnosis to pick an embryo of a certain gender) does not. In fact, it sounds empowering to be able to have a say in the gender of one’s baby. This Article explores new innovations in life sciences that make eugenics inevitable — for a certain class of people — those who can afford to pay for it. The designer baby thought experiment has been around for several decades, but until very recently the idea of actually being able to enhance an embryo was still very much science fiction. Enter CRISPR CAS 9, a new technology for editing genes in a cell’s DNA- which was heralded in late 2015 by the Journal Science as the “Breakthrough of the Year.” Although gene editing has been around since the 1970’s, until the advent of CRISPR CAS 9 , it was very difficult and had low success rates. CRISPR CAS 9 has the potential to make gene editing much simpler and eventually cheaper. In the next few decades, we can expect this technology to be used in conjunction with in vitro fertilization to help ensure that a fetus be free of certain diseases, have certain physical characteristics, and possibly even more. Due to commercial pressures (often driven by consumer-patients, who want autonomy in health care, but particularly in the realm of baby-making), we are unlikely to see legal roadblocks to designer babies in the United States. In this Article, I will lay out why I believe that the wild west of assisted reproduction will lead to the acceptance of gene editing. I explore the legal and ethical issues related to this, such as limits on the use of gene editing. I focus on how this development is likely to affect minorities and the poor, who will not be able to afford this technology. Finally, I will consider whether there is a way for this technology to proceed without having negative consequences on those who choose not to use this technology.

Obstacles Underserved Women Face to Access Postpartum Sterilization: Ethical Obligation for Modification

Postpartum tubal ligation is an effective, safe method of sterilization. Underserved women face many barriers in their attempt to access this time sensitive postpartum contraception. A major barrier for many of these women who are without the means of availing themselves of this procedure is the Federal policy regarding Medicaid sterilization funding. The two main barriers are a) The Medicaid form must be signed 30-180 days prior to the procedure and brought to the hospital on the procedure day and b) The reading level and design of the consent form is not patient friendly. Barriers enacted by Federal regulations may prevent disenfranchised women from exercising the same degree of reproductive healthcare autonomy as their more socio-economically advantaged counterparts. In addition to the consent form that needs to be signed and verified before the procedure, other barriers include the age of the woman, in which some hospitals restrict sterilization procedures on woman younger than 30, even though Medicaid funds sterilization for woman over 21, restrictions from Catholic affiliated hospitals where sterilization is not permitted, and the shortage of operating rooms and resources. We suggest change in clinical and legal practice fostered by revised Federal regulations is urgently needed to adhere to ethical standards of medical practice.

The Moral Meanings of Miscarriage

The Moral Meanings of Miscarriage

33. Let's Get Motivated!: Identifying What Facilitates Youth's Motivation for Learning About Health Self-Management

In this study we focused on youth's perceptions of healthcare providers as potential motivational supports in learning how to self-manage their health and healthcare needs. As youth transition to adulthood, they need to know how to communicate with healthcare providers, who to call when sick, and when it is necessary to call a healthcare provider. In this study we tested the universality of basic psychological needs in facilitating motivation for learning about health management among youth with varying degrees of mobility limitations (ML). That is, we wanted to determine whether autonomy, relatedness, and or competence, would be more or less important for one group of youth, than for others. Data come from the MyPath project, a longitudinal study that investigates the transition from pediatric to adult centered healthcare for youth with and without ML. The community-based sample from the Midwest includes 352 young people with severe (n=67), moderate (n=84), and little to no (n=201) mobility limitations (ML) between the ages of 16 and 24. Participants completed an online survey at baseline and at 18 months following enrollment. Predictor variables were measured at baseline and include healthcare autonomy (4-items, α= .81), health competence (6-items, α= .85), and relatedness (4-items, α= .82). The dependent variable, motivation for learning about self-management (5-items, α= .87), was measured at 18 months. Covariates included age, sex, geographic location, maternal education level, and assistive equipment use. We employed a multigroup path analysis comparing three groups of youth: no ML, moderate ML and severe ML. Results from the multigroup path analysis revealed that the model was invariant between the three groups. The path coefficients from autonomy to motivation and relatedness to motivation were only significant for youth with severe ML. Results indicate the invariance constraints on autonomy to motivation were significant X2(2) = 17.750, p = .001, as were relatedness to motivation, X2(2) = 8.265, p=.016. Although path coefficients were different for competence, the path was not significantly different. Results from our study show that for youth with severe ML, autonomy matters, as does relatedness. For youth with severe ML, their sense of control in their interactions in the healthcare environment and sense of freedom of health-related choice facilitates their motivation to learn about health self-management. Additionally, relatedness had a surprisingly negative effect on motivation for youth with severe ML—it impeded youth's motivation for learning about health self-management. The more belonging or affiliated youth felt to healthcare providers, the less motivated they were in learning how to manage their healthcare. Motivation for learning about health self-management is critical as youth are expected to manage their health and healthcare needs in adulthood; and knowing what facilitates or impedes this motivation can help providers in developing effective interventions. As we develop programs that teach youth about the healthcare transition and engage them in transition related conversations we need also to be examining their motivation to learn such information.

Attitudes towards Advance Care Planning and Healthcare Autonomy among Community-Dwelling Older Adults in Beijing, China.

Objectives. To investigate the preferences of ACP and healthcare autonomy in community-dwelling older Chinese adults. Methods. A community-based cross-sectional study was conducted with older adults living in the residential estate of Chaoyang District, Beijing. Results. 900 residents were enrolled. 80.9% of them wanted to hear the truth regarding their own condition from the physician; 52.4% preferred to make their own healthcare decisions. Only 8.9% of them preferred to endure life-prolonging interventions when faced with irreversible conditions. 78.3% of the respondents had not heard of an ACP; only 39.4% preferred to document in an ACP. Respondents with higher education had significantly higher proportion of having heard of an ACP, as well as preferring to document in an ACP, compared to those with lower education. Those aged <70 years had higher proportion of having heard of an ACP, as well as refusing life-prolonging interventions when faced with irreversible conditions, compared to those aged ≥70 years. Conclusions. Although the majority of community-dwelling older Chinese adults appeared to have healthcare autonomy and refuse life-prolonging interventions in terms of end-of-life care, a low level of “Planning ahead” awareness and preference was apparent. Age and education level may be the influential factors.

Ageism and Autonomy in Health Care: Explorations Through a Relational Lens.

Ageism within the context of care has attracted increasing attention in recent years. Similarly, autonomy has developed into a prominent concept within health care law and ethics. This paper explores the way that ageism, understood as a set of negative attitudes about old age or older people, may impact on an older person's ability to make maximally autonomous decisions within health care. In particular, by appealing to feminist constructions of autonomy as relational, I will argue that the key to establishing this link is the concept of self-relations such as self-trust, self-worth and self-esteem. This paper aims to demonstrate how these may be impacted by the internalisation of negative attitudes associated with old age and care. In light of this, any legal or policy response must be sensitive to and flexible enough to deal with the way in which ageism impacts autonomy.

Clinical protocol for the nursing care of mastectomized women: an exploratory descriptive study

Aims: To describe the nursing care provided to women undergoing mastectomy; to discuss the results in terms of ethical and aesthetic health care and to prepare a supportive clinical protocol aimed at subject autonomy in health care. Method: This is a descriptive and exploratory study, in which a qualitative approach is used. The techniques for data collection will be semi-structured interviews and field observation. Subject: the nursing staff of a female surgical clinic. The scenario will be a ward of the Female Surgical Clinic (FSC) of a university hospital in the federal public educational system in Niterói. The type of analysis will be thematic content. Expected results: This study is a relevant contribution to humane and effective care practice and to the development of knowledge in the area of women's health in oncological nursing. We also expect to contribute to education, research and innovation in care.

Sobre las voluntades anticipadas: aspectos bioéticos, jurídicos y sociales

From an interdisciplinary perspective, the article analyzes the bioethical, legal and social aspects of advance directives, tools that grant autonomy in health care with legal recognition. The authors systematize the legal framework of advance directives while characterizing their features and possible contents and highlighting the practical issues. As a complement to that analysis, the article emphasizes the importance of disclosing the nature of advance directives and addresses an asymmetric situation: legal recognition for these documents does not contribute to a social debate about the autonomy in health care, despite it being particularly needed. Summarizing, this article deals with one of the hot topics in bioethics: the right to make anticipated autonomous and informed decisions about the end of life in the health care context.

Who attends antenatal care and expanded programme on immunization services in Chad, Mali and Niger? the implications for insecticide-treated net delivery

BackgroundMalaria remains one of the largest public health problems facing the developing world. Insecticide-treated nets (ITNs) are an effective intervention against malaria. ITN delivery through routine health services, such as antenatal care (ANC) and childhood vaccination (EPI), is a promising channel of delivery to reach individuals with the highest risk (pregnant women and children under five years old). Decisions on whether to deliver ITNs through both channels depends upon the reach of each of these systems, whether these are independent and the effectiveness and cost effectiveness of each. Predictors of women attending ANC and EPI separately have been studied, but the predictors of those who attend neither service have not been identified.MethodsData from Chad, Mali and Niger demographic and health surveys (DHS) were analyzed to determine risk factors for attending neither service. A conceptual framework for preventative health care-seeking behaviour was created to illustrate the hierarchical relationships between the potential risk factors. The independence of attending both ANC and EPI was investigated. A multivariate model of predictors for non-attendance was developed using logistic regression.ResultsANC and EPI attendance were found to be strongly associated in all three countries. However, 47% of mothers in Chad, 12% in Mali and 36% in Niger did not attend either ANC or EPI. Region, mother's education and partner's education were predictors of non-attendance in all three countries. Wealth index, ethnicity, and occupation were associated with non-attendance in Mali and Niger. Other predictors included religion, healthcare autonomy, household size and number of children under five.ConclusionsAttendance of ANC and EPI are not independent and therefore the majority of pregnant women in these countries will have the opportunity to receive ITNs through both services. Although attendance at ANC and EPI are not independent, delivery through both systems may still add incrementally to delivery through one alone. Therefore, there is potential to increase the proportion of women and children receiving ITNs by delivering through both of these channels. However, modelling is required to determine the level of attendance and incremental potential at which it's cost effective to deliver through both services.

Patient autonomy and choice in healthcare: self-testing devices as a case in point

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility.

A relational perspective on autonomy for older adults residing in nursing homes

To review critically the traditional concept of autonomy, propose an alternative relational interpretation of autonomy, and discuss how this would operate in identifying and addressing ethical issues that arise in the context of nursing home care for older adults. Respect for patient autonomy has been the cornerstone of clinical bioethics for several decades. Important though this principle is, there is debate on how to interpret the core concept of autonomy. We review the appeal of the traditional approach to autonomy in health care and then identify some of the difficulties with this conception. We use philosophical methods to explain and discuss the traditional and relational conceptions of autonomy and we illuminate our discussion with examples of various contextual applications. We support the relational conception of autonomy as offering a richer, more contextualized understanding of autonomy which attends to the social, political and economic conditions that serve as background to an agent's deliberations. To illuminate these ideas, we discuss the situation of frail older adults who frequently find their autonomy limited not only by their medical conditions but also by cultural prejudices against the aged and by the conditions commonly found within the nursing homes in which many reside. We propose ways of improving the relational autonomy of this population.