Autonomy in an ascribed relationship: the case of adult children and elderly parents

Abstract Demographic and cultural changes have given rise to the question of whether adult children will continue to provide support to their elderly parents. In a qualitative study among selected respondents from a large representative sample, we investigated the motivations of adult children to provide support to their elderly parents. Five major themes emerged: Individual choice, obligation, reciprocity, quality of the relationship and genetic relatedness. Respondents rejected general norms of filial obligations, were reluctant to impose behavioral rules on others, but nevertheless expressed strong personal obligations to care. Individualization is often equated with withdrawing from providing care. Our findings suggest otherwise. Filial obligations tend to be strong, but personalized. Social prescriptions have given way to personal motives to provide care

Medical decision making in scarcity situations

The issue of the allocation of resources in health care is here to stay. The goal of this study was to explore the views of physicians on several topics that have arisen in the debate on the allocation of scarce resources and to compare these with the views of policy makers. We asked physicians (oncologists, cardiologists, and nursing home physicians) and policy makers to participate in an interview about their practices and opinions concerning factors playing a role in decision making for patients in different age groups. Both physicians and policy makers recognised allocation decisions as part of their reality. One of the strong general opinions of both physicians and policy makers was the rejection of age discrimination. Making allocation decisions as such seemed to be regarded as a foreign entity to the practice of medicine. In spite of the reluctance to make allocation decisions, physicians sometimes do. This would seem to be only acceptable if it is justified in terms of the best interests of the patient from whom treatment is withheld

Pediatric oncology as a Learning Health System: Ethical implications for best available treatment protocols

Introduction Pediatric oncology is often considered as a field in which research and care are highly integrated. We believe that this integration can be seen as a so‐called Learning Health System, a system in which research is considered an important means to continuously improve the practice of care. In order to substantiate our assumption of pediatric oncology as an LHS, we will analyze so‐called “best available treatment protocols.” These protocols always contain research elements, even if themain goal of these protocols is to treat children diagnosed with cancer. Methods We will analyze the implications for ethical review and informed consent if these protocols had to function as exponents of pediatric oncology an LHS. Results An analysis of best available treatment protocols teaches us how these protocols integrate care and research and how these protocols can be seen as exponents of a system where care and research need no longer be sharply distinct practices. Discussion Further intervention in the field of pediatric oncology is essential to also meet the requirements for an ethically responsible LHS. Conclusion Best available treatment protocols, which combine research and care, can be seen as examples of pediatric oncology as an LHS. However, in order to prevent that research elements in these protocols will be overlooked, we will have to find new ways to accommodate for the oversight of these protocols, such as multifaceted review and risk‐adapted approaches. Moreover, informed consent process must be changed in order for patients to understand how care and research are integrated in these protocols

Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child’s future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents n

Developments in euthanasia practice in the Netherlands: Balancing professional responsibility and the patient’s autonomy

In 2015, euthanasia accounted for 4.5% of deaths in the Netherlands, of which 93% were performed by a GP. Historically, a conflict of physician’s duties—to alleviate unbearable suffering and at the same time preserve the patient’s life—is central to the justification of euthanasia practice in the Netherlands. However, there seems to be a shift towards a greater emphasis on the patient’s autonomous wish as the primary basis for euthanasia. This shift has consequences for the role and interpretation of the physician’s duties in end-of-life care. This paper aims to describe these developments in euthanasia practice and end-of-life decision-making. We describe important relevant developments and look into the role and the meaning of two dimensions of the concept of ‘patient autonomy’ regarding end-of-life decisions, in particular, the euthanasi

Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning

Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment

Physicians' experiences with euthanasia: a cross-sectional survey amongst a random sample of Dutch physicians to explore their concerns, feelings and pressure

BACKGROUND: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide. METHODS: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide. RESULTS: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especial

Public and physicians' support for euthanasia in people suffering from psychiatric disorders: a cross-sectional survey study

BACKGROUND: Although euthanasia and assisted suicide (EAS) in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. METHODS: A survey was distributed amongst a random sample of Dutch 2641 citizens (response 75%) and 3000 physicians (response 52%). Acceptance and conceivability of performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed. RESULTS: Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority (> 65%) of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient's suffering is unbearable and without prospect and whether the request is well-considered. CONCLUSION: The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians' support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria

Use and the Users of a Patient Portal: Cross-Sectional Study

Background: Patient portals offer patients access to their medical information and tools to communicate with health care providers. It has been shown that patient portals have the potential to positively impact health outcomes and efficiency of health care. It is therefore important that health care organizations identify the patients who use or do not use the patient portal and explore the reasons in either case. The Unified Theory of Acceptance and Use of Technology (UTAUT) is a frequently used theory for explaining the use of information technology. It consists of the following constructs: performance expectancy, effort expectancy, social influence, facilitating conditions, and behavioral intention to use. Objective: This study aimed to explore the prevalence of patient portal use and the characteristics of patients who use or do not use a patient portal. The main constructs of UTAUT, together with demographics and disease- and care-related characteristics, have been measured to explore the predictive factors of portal use. Methods: A cross-sectional study was conducted in the outpatient departments for adult patients of a university hospital in the Netherlands. Following outcomes were included: self-reported portal use, characteristics of users such as demographics, diseaseand care-related data, eHealth literacy (modified score), and scores of UTAUT constructs. Descriptive analyses and univariate and multivariate logistic regression were also conducted. Results: In the analysis, 439 adult patients were included. Furthermore, 32.1% (141/439) identified as being a user of the patient portal; 31.2% (137/439) indicated as nonusers, but being aware of the existence of the portal; and 36.6% (161/439) as being nonusers not aware of the existence of the portal. In the entire study population, the factors of being chronically ill (odds ratio, OR 1.62, 95% CI 1.04-2.52) and eHealth literacy (modified score; OR 1.12, 95% CI 1.07-1.18) best predicted portal use. In users and nonusers who were aware of the portal, UTAUT constructs were added to the multivariate logistic regression, with chronically ill and modified eHealth literacy sum score. Effort expectancy (OR 13.02, 95% CI 5.68-29.87) and performance expectancy (OR 2.84, 95% CI 1.65-4.90) are shown to significantly influence portal use in this group. Conclusions: Approximately one-third of the patients of a university hospital self-reported using the patient portal; most expressed satisfaction. At first sight, being chronically ill and higher scores on the modified eHealth literacy scale explained portal use. Adding UTAUT constructs to the model revealed that effort expectancy (ease of use and knowledge and skills related to portal use) and performance expectancy (perceived usefulness) influenced portal use. Interventions to improve awareness of the portal and eHealth literacy skills of patients and further integration of the patient portal in usual face-to-face care are needed to increase use and potential subsequent patient benefits