Autonomy In Health Care Research Articles

Population-Based Study on the Maternal-Newborn-Child Health Continuum of Care: Evidence From Lower-Middle-Income Countries in Southeast Asia.

This article aimed to assess the relationships within the continuum of care for maternal, neonatal, and child health (MNCH) at four service levels, the utilization distribution, and its contributing factors in six lower-middle-income countries in Southeast Asia. It was based on data from the Demographic and Health Survey, a nationally representative and repeated cross-sectional survey, on 50 619 ever-married women aged 15-49 years. Only 21.9% of women (n = 10 252) obtained all four levels of continuing MNCH services. Women and husbands' education and employment, parity, mass media consumption, and wealth quintiles were the strongest determinants for the continuation of care, apart from access to health care, decision-making autonomy in health care, and women's age. Identifying populations that experience health inequalities, prominent policy intervention, and better health promotion and advocacy systems regarding pregnancy, delivery, and postnatal and immunization care might help to enhance maternal and child health and equity outcomes.

Awareness and attitudes towards advance care planning in primary care: role of demographic, socioeconomic and religiosity factors in a cross-sectional Lebanese study

ObjectiveTo assess awareness and attitudes towards engaging in advance care planning (ACP) and their relationship with demographic, socioeconomic and religiosity factors among Lebanese middle-aged to older-aged adults in primary care.DesignA...

The Women Who Don’t Get Counted

The Women Who Don’t Get Counted

Spatial clusters distribution and modelling of health care autonomy among reproductive\u2010age women in Ethiopia: spatial and mixed\u2010effect logistic regression analysis

BackgroundWhile millions of women in many African countries have little autonomy in health care decision-making, in most low and middle-income countries, including Ethiopia, it has been poorly studied. Hence, it is important to have evidence on the factors associated with women’s health care decision making autonomy and the spatial distribution across the country. Therefore, this study aimed to investigate the spatial clusters distribution and modelling of health care autonomy among reproductive-age women in Ethiopia.MethodsWe used the 2016 Ethiopian Demographic and Health Survey (EDHS) data for this study. The data were weighted for design and representativeness using strata, weighting variable, and primary sampling unit to get a reliable estimate. A total weighted sample of 10,223 married reproductive-age women were included in this study. For the spatial analysis, Arc-GIS version 10.6 was used to explore the spatial distribution of women health care decision making and spatial scan statistical analysis to identify hotspot areas. Considering the hierarchical nature of EDHS data, a generalized linear mixed-effect model (mixed-effect logistic regression) was fitted to identify significant determinants of women’s health care decision making autonomy. The Intra-Class Correlation (ICC) were estimated in the null model to estimate the clustering effect. For model comparison, deviance (-2LLR), Akakie Information Criteria (AIC), and Bayesian Information Criteria (BIC) parameters were used to choose the best-fitted model. Variables with a p-value < 0.2 in the bivariable analysis were considered for the multivariable analysis. In the multivariable mixed-effect logistic regression analysis, the Adjusted Odds Ratio (AOR) with 95% Confidence Interval (CI) were reported to declare the strength and significance of the association between women’s decision-making autonomy and independent variables.ResultsIn this study, about 81.6% (95% CI: 80.6%, 82.2%) of women have autonomy in making health care decisions. The spatial distribution of women’s autonomy in making health decisions in Ethiopia was non-random (global Moran’s I = 0.0675, p < 0.001). The significant hotspot areas of poor women’s autonomy in making health care decisions were found in north Somali, Afar, south Oromia, southwest Somali, Harari, and east Southern Nations Nationalities and Peoples (SNNP) regions. In the mixed-effect logistic regression analysis; being urban (AOR = 1.59, 95% CI: 1.04, 2.45), having secondary education (AOR = 1.60, 95% CI: 1.06, 2.41), having an occupation (AOR = 1.19, 95% CI: 1.01, 1.40) and being from the richest household (AOR = 2.14, 95% CI: 1.45, 3.14) were significantly associated with women autonomy in deciding for health care.ConclusionsThe spatial distribution of women’s autonomy in making the decision for health care was non-random in Ethiopia. Maternal education, residence, household wealth status, region, and maternal occupation were found to influence women’s autonomy. Public health interventions targeting the hotspot areas of poor women autonomy through enhancing maternal occupation and employment is needed to improve women empowerment in making decisions for health care.

Reflections on elderly autonomy and its meaning for the practice of nursing care.

To reflect on autonomy in health care, its perspective on the lives of the elderly, and its meaning for the practice of nursing care. Theoretical essay on the practice of nursing care to promote autonomy and self-care for the elderly. It is necessary to qualify the practice of nursing care to consider the aging process and maintain the autonomy of the elderly. Three parts emerged: "The autonomy of the elderly and the care plan", "Nursing in the self-care process", and "Challenges to the practice of caring for the elderly in nursing". There is still a deficiency in promoting autonomy for the elderly due to the need for a review of the practice of nursing care, which, considering aging in Brazil, needs to undertake new actions in order to encourage self-care and autonomy in this population.

Completion and Factors Associated with Maternity Continuum of Care among Mothers Who Gave Birth in the Last One Year in Enemay District, Northwest Ethiopia.

Background Ethiopia still suffers high levels of neonatal and maternal mortality, so the maternity continuum of care is a continuous framework for the delivery of maternal care from pregnancy to the postnatal period. Skilled care during pregnancy, childbirth, and the postpartum period is an important intervention in reducing maternal and neonatal morbidity and mortality. But in Ethiopia, there are limited studies on the completion of the maternity continuum of care, so this study will help to suggest interventions in order to reduce the dropout of the maternity continuum of care. Objective To assess the completion of the maternity continuum of care and factors associated with it among mothers who gave birth in the last one year in Enemay District, Northwest Ethiopia. Method and Materials. A community-based cross-sectional study was conducted from February 25 to March 10, 2019, on 651 women who gave birth in the last one year. The data were collected by a face-to-face interview through pretested and structured questionnaires. Binary logistic regression was used to identify predictors of the completion of the maternity continuum of care. Variables with a P value < 0.05 in multivariable analysis were declared as statistically significant associated factors. Results This study revealed that about 45% (95% CI: 40.9%, 48.8%) of respondents completed the continuum of care. Women with secondary education (AOR = 6, 95% CI: 2.26, 16.6), women whose occupation is farming (AOR = 0.18, 95%, CI: 0.1, 0.32), women who have autonomy in health care decision (AOR = 4, 95% CI: 2.26, 7.2), women who have exposure to media (AOR = 1.97, 95% CI: 1.2, 3.27), women with wanted pregnancies (AOR = 3.33, 95% CI: 1.87, 5.9), para five and above women (AOR = 2.85, 95% CI: 1.28, 6.3), and women whose husbands are employed (AOR = 4.97, 95% CI: 1.16, 21.2) were significantly associated with the completion of the maternity continuum of care. Conclusions and Recommendation. This study showed that less than half of the participants had achieved the continuum of care and education level, and both respondents and their husband's occupation, parity, autonomy in health care decision, exposure to the mass media, and wantedness of pregnancy were associated with the completion of the maternity continuum of care; therefore, working on enhancing the capacity of women's autonomy in health care and decision-making and preventing unintended pregnancy helps to improve the completion of the maternity continuum of care.

Clinical Ethics of Dementia Care: Respecting the Dignity of Vulnerable and Frail Individuals

The New Clinical Ethics of Dementia Care is dedicated to the dignity of physically frail and cognitively vulnerable individuals. To deliberate on the dignity of a person with dementia, it is important to focus on their autonomy in health care and daily life.

'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care.

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.

Barriers to Care in ACHD: A Study of Young Adults in Saskatchewan

BackgroundAdults with congenital heart disease (CHD) are living longer with more complex disease. Maintaining lifelong care prevents morbidity and mortality, but many patients remain lost to follow-up or experience care gaps. We sought to assess barriers to care for patients with adult CHD (ACHD) in Saskatchewan, a Canadian province with no local congenital cardiac surgical support and no clear framework for ACHD care. MethodsWe performed a telephone survey of patients with CHD transferred from pediatric to adult cardiology from 2007 to 2014. Our primary outcome was loss to follow-up > 2 years from last recommended cardiology appointment and/or multiple missed cardiology appointments. Secondary outcomes were guideline-based care (specialist training, adherence to appropriate endocarditis prophylaxis, pre-pregnancy counselling for women), presence or absence of previously described barriers to care in ACHD, and health care autonomy using the Krantz Health Opinion Survey. ResultsWe interviewed 32 patients (30% response rate). One-quarter met the primary outcome: lost to follow-up > 2 years from last recommended cardiology appointment and/or self-report of missed cardiology appointments. Only 69% of young adults in Saskatchewan were receiving guideline-based care for their CHD (appropriate level of specialist expertise and frequency of follow-up). Only 72% of patients were adhering to endocarditis prophylaxis recommendations and 61% of women surveyed received counselling regarding pregnancy. Patients indicated a low preference for participating in decision making regarding their care on the Krantz Health Opinion Survey. ConclusionsWith our survey, we have created a novel snapshot of CHD care in Saskatchewan and have identified significant deficits.

Mothers' Healthcare Autonomy, Maternal-Health Utilization and Healthcare for Children under-3 Years: Analysis of the Nigeria DHS Data (2008-2018).

This study was designed to simultaneously examine if mothers’ personal healthcare autonomy within the household, and the level of their maternal-healthcare utilization, translates into better preventive (complete immunization) and curative (treatments for diarrhoea, fever and acute respiratory infection) efforts on morbidities in child healthcare. We analysed data pooled from three consecutive waves of the Nigeria Demographic and Health Survey: the surveys of 2008, 2013 and 2018. Using a multilevel logistic regression, we estimated the odds ratio for each of the outcome variables while adjusting for covariates. Findings revealed that mothers’ health autonomy is positively associated with child immunization and treatment of morbidities (except diarrhoea), a relationship moderated by the frequency of mothers’ exposure to media. Additionally, mothers’ healthcare utilization is positively associated with complete immunization, and all forms of morbidity treatment (except diarrhoea). Although the relationship between mothers’ healthcare-utilization and child immunization is not dependent on family wealth, however, the relationship between mothers’ healthcare utilization and treatment of morbidity is dependent. Policy effort should be geared towards stimulating mothers to seek appropriate and timely child healthcare and future studies could consider looking into the mediating role of paternal support in this relationship.

Women's decision-making autonomy and its relationship with child feeding practices and postnatal growth.

Childhood stunting remains a global public health concern. Little has been documented on the effect of women's decision-making autonomy on child growth in settings where decision-making at the household and community levels is largely dominated by men. To assess the relationship between maternal autonomy and child growth, we analysed data from a cross-sectional study of 422 mothers and their youngest child aged 6-24 months in the Bawku West District of Ghana. The dimensions of women's autonomy measured were decision-making power, freedom of mobility and financial autonomy. We then compared how each dimension was associated with the likelihood of stunting and wasting. The important predictors of child growth and dietary intake as measured by the mean length-for-age Z-score (LAZ) and minimum acceptable (MAD) diet, respectively, were determined using multivariable regression models. The overall composite index of women autonomy (CIWA) showed that 52⋅8 % of women were of high autonomy and half of them had higher autonomy regarding their own and their children's health. After adjusting (multiple regression analysis) for potential confounders, the mean LAZ of children born to women of high autonomy was significantly higher than LAZ of children born to women of low autonomy (β = 0⋅132; 95 % CI 0⋅19, 0⋅95; P = 0⋅004). Similarly, high women's autonomy was a significant independent predictor of meeting MAD (AOR = 1⋅59; CI 1⋅09, 2⋅34). Of all, the dimensions of women's autonomy measured in this study, health care autonomy better predicted child growth and dietary intake. Based on the findings, nutrition policies and interventions that enhance women's decision-making autonomy could have a positive impact on child growth outcomes.

Health services and intersections of care: promises and pitfalls experienced by LGBTQ + Latino/a emerging adults

LGBTQ + young people of color manage societal marginalization related to their LGBTQ + and racial/ethnic identities, which can shape health challenges. Despite their elevated need for responsive health services, cultural competence among service providers has largely focused on race/ethnicity, rather than LGBTQ + status, resulting in a lack of inclusive care. To understand how to better serve marginalized young adults through elevating their diverse voices, we employ an intersectional lens of emerging adulthood to qualitatively explore the health service experience narratives of 41 LGBTQ + Latino/a emerging adults between 18 and 25. First, most participants stressed that being perceived as young constrained their patient-provider interactions and limited their health care autonomy. Secondly, participants encountered a continuum of service providers that ranged across prejudice, ignorance, and acceptance tied to the young person’s LGBTQ + and intersecting identities. Finally, participants outlined what they preferred when it came to health care services. This study has important implications for how health service providers may establish inclusive health care that promotes marginalized emerging adults’ autonomy and wellbeing.

Correlates of mistimed and unwanted pregnancy among women in the Democratic Republic of Congo

Unwanted and mistimed pregnancies impose threats on the health and well-being of the mother and child and limit the acquisition of optimal sexual and reproductive health services, especially in resource-constrained settings like the Democratic Republic of Congo (DRC). This study aimed to determine the prevalence and correlates of mistimed and unwanted pregnancies among women in the DRC. Data were drawn from the 2013-14 DRC Demographic Health Survey (EDS-RDC II). Bivariate and multivariate logistic regression analysis was performed to identify correlates of mistimed and unwanted pregnancies. Sequential logistic regression modelling including distal (place of residence), intermediate (socio-demographic and socioeconomic factors) and proximal (reproductive health and family planning) factors was performed using multivariate analysis. More than a quarter (28%) of pregnancies were reported as unintended (23% mistimed and 5% unwanted). Women who wanted no more children (aOR 1.21; CI: 1.01, 1.44) had less than 24 months of birth spacing (aOR 2.14; CI: 1.80, 2.54) and those who intended to use a family planning method (aOR 1.24; CI: 1.01, 1.52) reported more often that their last pregnancy was mistimed. Women with five or more children (aOR 2.13; CI: 1.30, 3.49), those wanting no more children (aOR 13.07; CI: 9.59, 17.81) and those with more than 48 months of birth spacing (aOR 2.31; CI: 1.26, 4.23) were more likely to report their last pregnancy as unwanted. The high rate of unintended pregnancies in the DRC shows the urgency to act on the fertility behaviour of women. The associated intermediate factors for mistimed and unwanted pregnancy indicate the need to accelerate family planning programmes, particularly for women of high parity and those who want no more children. Likewise, health promotion measures at the grassroots level to ensure women's empowerment and increase women's autonomy in health care are necessary to address the social factors associated with mistimed pregnancy.

Patients' autonomy as a negotiated order: an ethnographic perspective on the clinical management of childhood obesity.

The principle of patients' autonomy has assumed a central place in healthcare. Patients are encouraged to play an active role in the management of their health, especially when they are affected by chronic illnesses that require long-term follow-up. In this article, we analyse patients' and professionals' conceptions of patients' autonomy in the context of childhood obesity management. Based on the results of an ethnographic study that we conducted within a paediatric hospital in French-speaking Switzerland, we put into perspective the discourses that professionals, parents and children construct around their experiences of the therapy. Our study reveals that the conceptions that these three different actors have of patients' autonomy converge on several points, but they also diverge on many others. While the rise of autonomy in healthcare has mostly been analysed as a form of empowerment of patients, our results show that this principle also introduces new forms of social control over patients' lives, and it creates new tensions for patients who are unable to match with the normative expectations of professionals in terms of self-management and self-care.

The policy discourses of patient autonomy in home care and the re-shaping of nurses’ professional work and identities

Introduction: Over the last decade, new health care policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. The aim was to explore how nurses in home care deal with the transformation to fostering patient autonomy. The research questions included: How do community nurses perceive the required changes in professional knowledge, skills and attitudes in promoting self-management of patients and their families? What challenges or dilemmas do they encounter and how do they cope with these? Answering these questions provides insight into the changes in professional work practices and professional identities and the ways practitioners cope with these changes, learn from and develop their own practices. Methods: A qualitative case study was conducted in community care Yin, 2013. The ‘case’ was a professional development project for community nurses, funded by ZonMW, aiming to increase nurses’ professional knowledge, skills and attitude to support autonomy of clients and their social system. Data were collected by the researcher as participant observer of the four meetings of one professional development group. Reflective notes of the observations were taken before, during and after learning circle meetings. A narrative analysis Riessman, 2008 was conducted on these data and three main themes constructed. Theory: The theoretical notion of ‘relational agency’ Edwards, 2010 and the moral concept of ‘practices of responsibility’ Walker, 2007 were used to conduct a narrative analysis on the nurses’ stories about patient autonomy. Findings: Three main themes expressed the moral demands experienced and negotiated by the nurses: adapting to the person; activating patients’ strengths; and collaboration with patients and informal caregivers. The overarching challenge the nurses face, is creating an equal partnership with clients and family members. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on health care budget savings. This is mirrored in the nurses’ ‘stories of ambiguity’: the turn towards autonomy in healthcare raises moral questions about responsibilities for care. Conclusion: Each of these tasks has troublesome elements and presents challenges and ethical dilemmas for the nurses, resulting in shifts in professional identity and practice. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. Lessons learned: The ‘relational turn in expertise’ Edwards, 2010 requires long-term coaching of individual practitioners as well as teams, and a culture change in healthcare practice. Co-education of nurses, patients and informal caregivers is needed to achieve this goal of promoting patient autonomy. Limitations and suggestions for future research: additional in-depth interviews could have added to the insight into dilemmas and tensions in practice and in nurses’ coping strategies. More research is needed into the conversations and co-actions within patient-family-practitioner partnerships: the relational dynamics of making decisions, establishing connections and breaking them, negotiating responsibility and creating trust or mistrust.

Factors associated with insecticide-treated net usage among women of childbearing age in Malawi: a multilevel analysis

BackgroundThis study aimed to identify factors at individual and community level influencing insecticide-treated net (ITN) usage among groups of women of childbearing age (WOCBA) in Malawi.MethodsFactors influencing ITN usage in Malawi were assessed through interviews with 16,130 WOCBA (15–49 years) across 850 communities who participated in the 2015–2016 Malawi Demographic Health Survey. Multilevel logistic regression analysis was used.ResultsITN use was similar between pregnant women and non-pregnant women with children under 5 years (45.9% and 46.9%, respectively), but slightly lower among non-pregnant women without children under 5 years (39.1%). Both individual and community characteristics were associated with ITN use among WOCBA and varied significantly across subgroups. Specifically, non-pregnant women with children under 5 years living in communities where women had high autonomy in health care decisions had an 18% greater odds of using an ITN compared with those from communities where women had low health care autonomy (adjusted odds ratio [aOR] = 1.18; 95% confidence interval [CI] 1.00–1.38). Distance to health care facility influenced ITN usage among pregnant women; those who did not regard distance as a problem had a 44% greater odds of using an ITN than those for whom distance was seen as a problem (aOR = 1.44; 95% CI 1.09–1.89). Number of household members, region, urbanization, and community ITN coverage influenced ITN usage across all WOCBA groups.ConclusionThe findings confirmed the importance of assessing various factors affecting ITN usage among groups of WOCBA. Both individual- and community-level factors should be considered when designing and implementing ITN programmes in Malawi.

Autonomy-Centered Healthcare.

In this paper, I aim to demonstrate that the consequences of the current United States health insurance scheme on both physician and patient autonomy is dire. So dire, in fact, that the only moral solution is something other than what we have now. The United States healthcare system faces much criticism at present. But my focus is particular: I am interested in the ways in which insurance interferes with physician and patient autonomy. (I do not consider The Affordable Care Act much of a change in this aspect of the system, for it still relies heavily on private insurance, albeit often subsidized.) I will argue in favor of an expansion of the traditional conception of what I call "medical autonomy" or "healthcare autonomy" and the usual role it plays in bioethical discussions. More generally, I show that in morally designing or evaluating any healthcare system, serious attention should be paid to how this system helps foster what I call active autonomy.

Patient autonomy in home care: Nurses' relational practices of responsibility.

Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. A case study was conducted in a professional development course ('learning circle') for home care nurses, including participant observations and focus groups. The theoretical notion of 'relational agency' and the moral concept of 'practices of responsibility' were used to conduct a narrative analysis on the nurses' stories about autonomy. Eight nurses, two coaches and two university lecturers who participated in the learning circle. Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients' strengths and collaboration with patients and informal caregivers. On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together.

Actions for health advocacy and user empowerment by nurses of the Family Health Strategy.

To understand the actions for health advocacy and user empowerment developed by nurses of the Family Health Strategy in Brazil. A qualitative study carried out with nurses working in the Family Health Strategy in a city in the South of Brazil. Participants were selected by non-probabilistic, snowball sampling. Data was collected from a semi-structured interview guide, recorded, transcribed and analyzed through discursive textual analysis. Fifteen (15) nurses participated in the study. Three categories emerged: user participation; health environments; health advocacy actions related to the multiprofessional team. The closer relationship that the Family Health Strategy enables between the multiprofessional team, users and the community promotes health advocacy practices, while user empowerment favors autonomy in health care, encouraging a healthier life and enabling them to intervene in the health decisions of the local community.

Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians' perspectives.

Patients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy. The objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care. Qualitative semi-structured interviews were conducted with consultant oncologists (n=11) and palliative medicine doctors (n=7) working in oncology centres and palliative care units across Australia. We found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions. The ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care. Medical norms and professional boundaries surrounding 'good deaths' have a greater influence on care than patient preference. ACP programs, therefore, may be rejected by healthcare professionals as irrelevant to care or may have the unintended consequence of limiting patient autonomy when used as a professional tool to encourage a 'right' way to die. A singular focus on bureaucratic ACP programs, which reduce patient autonomy to a 'tick box' exercise, may fail to enhance EOL care in any meaningful way.