Voor een ander : beslissingsverantwoordelijkheden in de verpleeghuisgeneeskunde

What is the right thing to be done for this patient? This question is the central point in medicine. Usually physician and patient discuss what is needed and what is wanted. When the patient suffers from dementia or is otherwise not capable of deciding for herself, a third party enters the scene: a representative or proxy decision maker. Most of the time this is a family member of the patient. He or she has the task to decide on behalf of the patient. But even when you know each other well and have known each other for a long time, to decide for some one else is a difficult matter. And what, for example, is the significance of former preferences by the patient, and his of her actual expressions of will? In this thesis the theme of family involvement in the decision making for elderly nursing home patients is thought through, based on extensive patient histories gathered from qualitative research in nursing homes (using the method of participant observation). Central question is the relation between the responsibility of the physician versus the ideas of family members about what is the right thing to do for the patient.UBL - phd migration 201

Advance care planning in the Netherlands

The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches. Public Health and primary careGeriatrics in primary car

Voor een ander : beslissingsverantwoordelijkheden in de verpleeghuisgeneeskunde

What is the right thing to be done for this patient? This question is the central point in medicine. Usually physician and patient discuss what is needed and what is wanted. When the patient suffers from dementia or is otherwise not capable of deciding for herself, a third party enters the scene: a representative or proxy decision maker. Most of the time this is a family member of the patient. He or she has the task to decide on behalf of the patient. But even when you know each other well and have known each other for a long time, to decide for some one else is a difficult matter. And what, for example, is the significance of former preferences by the patient, and his of her actual expressions of will? In this thesis the theme of family involvement in the decision making for elderly nursing home patients is thought through, based on extensive patient histories gathered from qualitative research in nursing homes (using the method of participant observation). Central question is the relation between the responsibility of the physician versus the ideas of family members about what is the right thing to do for the patient

Those famous red pills-Deliberations and hesitations. Ethics of placebo use in therapeutic and research settings

Ethiek en Rech

Deliberating Clinical Research with Cognitively Impaired Older People and Their Relatives: An ethical add-on study to the protocol "Effects of Temporary Discontinuation of Antihypertensive Treatment in the Elderly (DANTE) with Cognitive Impairment"

OBJECTIVES To explore the decision-making process involving elderly subjects with mild cognitive impairment and a relative when asked to participate in a clinical trial. DESIGN, SETTING, AND PARTICIPANTS In this qualitative study, we investigated the decision-making process during the informed consent conversations between the researchers of a clinical trial and 18 persons aged 75 years and older, with a Mini-Mental State Examination score ≥21 and ≤27. This assessment was performed by both observation and a standardized interview with the older person and a close relative who could act as a proxy (surrogate) decision maker, if necessary. The informed consent conversation and procedure took place at the home of the potential participants. MEASUREMENTS Videotapes or audiotapes were transcribed and analyzed by using coding schemes. RESULTS The participants were able to formulate substantial reasons why they would want to participate in the clinical trial. Willingness to help others and contribute to medical knowledge, combined with the absence of substantial risks, were predominant reasons for participation. Most older subjects did consult their relatives, who generally considered them capable of deciding for themselves. CONCLUSIONS Notwithstanding their (mild) cognitive impairment, these older subjects were able to formulate substantiated reasons for participation in a clinical trial. Thus, it is plausible that they were capable of making this decision themselves, which was affirmed by their relatives. Recognition of the desire to contribute unselfishly to research that might benefit others has important implications for future clinical research conducted in older people with mild cognitive impairment.Geriatrics in primary car

Towards Culturally Sensitive Shared Decision-Making in Oncology A Study Protocol Integrating Bioethical Qualitative Research on Shared Decision-Making Among Ethnic Minorities With Ethical Reflection

Background Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz's value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.Analysis and support of clinical decision makin

Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

Importance and objective Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia. Design For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308). Setting and participants Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations. Main outcomes Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas. Results Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context. Conclusions Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.Geriatrics in primary carePublic Health and primary car