What value structure underlies shared decision making? A qualitative synthesis of models of shared decision making.

OBJECTIVE: To construct the underlying value structure of shared decision making (SDM) models. METHOD: We included previously identified SDM models (n = 40) and 15 additional ones. Using a thematic analysis, we coded the data using Schwartz's value theory to define values in SDM and to investigate value relations. RESULTS: We identified and defined eight values and developed three themes based on their relations: shared control, a safe and supportive environment, and decisions tailored to patients. We constructed a value structure based on the value relations and themes: the interplay of healthcare professionals' (HCPs) and patients' skills [Achievement], support for a patient [Benevolence], and a good relationship between HCP and patient [Security] all facilitate patients' autonomy [Self-Direction]. These values enable a more balanced relationship between HCP and patient and tailored decision making [Universalism]. CONCLUSION: SDM can be realized by an interplay of values. The values Benevolence and Security deserve more explicit attention, and may especially increase vulnerable patients' Self-Direction. PRACTICE IMPLICATIONS: This value structure enables a comparison of values underlying SDM with those of specific populations, facilitating the incorporation of patients' values into treatment decision making. It may also inform the development of SDM measures, interventions, education programs, and HCPs when practicing.

EOLinPLACE: an international research project to reform the way dying places are classified and understood.

Background: Whenever possible, a person should die where they feel it is the right place to be. There is substantial global variation in home death percentages but it is unclear whether these differences reflect preferences, and there are major limitations in how the place of death is classified and compared across countries. Objectives: EOLinPLACE is an international interdisciplinary research project funded by the European Research Council aiming to create a solid base for a ground-breaking international classification tool that will enable the mapping of preferred and actual places towards death. Design: Mixed-methods observational research. Methods and analysis: We combine classic methods of developing health classifications with a bottom-up participatory research approach, working with international organizations representing patients and informal carers [International Alliance of Patients' Organizations (IAPO) and Eurocarers]. First, we will conduct an international comparative analysis of existing classification systems and routinely collected death certificate data on place of death. Secondly, we will conduct a mixed-methods study (ethnography followed by longitudinal quantitative study) in four countries (the Netherlands, Portugal, Uganda and the United States), to compare the preferences and experiences of patients with life-threatening conditions and their families. Thirdly, based on the generated evidence, we will build a contemporary classification of dying places; assess its content validity through focus groups with patients, carers and other stakeholders; and evaluate it in a psychometric study to examine construct validity, reliability, responsiveness, data quality and interpretability. Ethics: Approved by the ethics committee of the University of Coimbra, Faculty of Medicine (CE-068-2022) and committees in each of the participating countries. Discussion: The findings will provide a deeper understanding of the diversity in individual end-of-life pathways. They will enable key developments such as measurement of progress towards achievement of preferences when care can be planned. The project will open new directions in how to care for the dying. Trial registration: Research Registry UIN 9213.

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.

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.

The value of metaphorical reasoning in bioethics: An empirical-ethical study.

BACKGROUND:: Metaphors are often used within the context of ethics and healthcare but have hardly been explored in relation to moral reasoning. OBJECTIVE:: To describe a central set of metaphors in one case and to explore their contribution to moral reasoning. METHOD:: Semi-structured interviews were conducted with 16 parents of a child suffering from the neurodegenerative disease CLN3. The interviews were recorded, transcribed, and metaphors were analyzed. The researchers wrote memos and discussed about their analyses until they reached consensus. ETHICAL CONSIDERATIONS:: Participants gave oral and written consent and their confidentiality and anonymity were respected. FINDINGS:: A central set of metaphors referred to the semantic field of the hands and arms and consisted of two central metaphors that existed in a dialectical relationship: grasping versus letting go. Participants used these metaphors to describe their child's experiences, who had to "let go" of abilities, while "clinging" to structures and the relationship with their parent(s). They also used it to describe their own experiences: participants tried to "grab" the good moments with their child and had to "let go" of their child when (s)he approached death. Participants, in addition, "held" onto caring for their child while being confronted with the necessity to "let go" of this care, leaving it to professional caregivers. DISCUSSION:: The ethical analysis of the findings shows that thinking in terms of the dialectical relationship between "grasping" and "letting go" helps professional caregivers to critically think about images of good care for children with CLN3. It also helps them to bear witness to the vulnerable, dependent, and embodied nature of the moral self of children with CLN3 and their parents. CONCLUSION:: Metaphorical reasoning may support the inclusion of marginalized perspectives in moral reasoning. Future studies should further explore the contribution of metaphorical reasoning to moral reasoning in other cases.

Medical and moral considerations regarding complex medical decisions in older patients with multimorbidity: a compact deliberation framework.

In health care for older adults, patients with multimorbidity usually receive the same interventions as those patients without multimorbidity. However, standard curative or life-sustaining treatment options have to be considered carefully in view of the maximally attainable result in older and frail patients. To guide such complex medical decisions, we present a compact deliberation framework that could assist physician(s) in charge of the medical treatment of a specific elderly patient to systematize his own thinking about treatment and decisional responsibilities, in case of an intercurrent disease.The framework includes four questions to be addressed when deciding on a single urgent standard curative or life-sustaining intervention in acute medical problems of an elderly patient with multimorbidity: 1) What is known about the patient's aims and preferences? 2) Will the intervention be effective? 3) Will the intervention support the aims and preferences of the patient? 4) In view of the aims and preferences, will the risks and benefits be in balance?If all four considerations are answered favorably, the intervention will fit patient-centered and appropriate care for frail older patients with multimorbidity.Application to a patient case illustrates how our framework can improve the quality of the shared decision-making process in care for older people and helps clarify medical and moral considerations regarding how to appropriately treat the individual patient.

Problems experienced by informal caregivers with older care recipients with and without cognitive impairment.

The care of older persons can have negative impact on the caregiver. The objective of this population-based observational study is to identify problems experienced by informal caregivers, and the extent of related difficulties, in their care of older care-dependent recipients with and without cognitive impairment. Caregivers (n = 2,704) caring for a home-dwelling person aged ≥ 75 years responded to a questionnaire with 23 questions on problems and related difficulties by mail. Prevalence of self-reported problems and related difficulties was calculated. The impact of the problem was estimated by weighing the percentage of problems reported as being difficult against the prevalence of problems. The median number of problems was 12 (range 0-23), with 5 (range 0-23) reported as difficult. Informal caregivers experience a variety of problems, with the impossibility to engage in joint social activities having the highest impact. The impact of problems increased when the care recipient had a cognitive problem.

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.

Egg cell preservation and the right to die in the Netherlands: citizens' choices and the limits of medicine.

It is a funny thing with the Dutch. On one hand, they seem preoccupied with death and adamant that patients be allowed to decide for themselves in what way they want to die. On the other, contrary to popular belief, the Dutch physician is allotted a very influential role in treatment decisions, far more prominent than in many other Western countries. From an American perspective Dutch professional ethics may seem quite paternalistic: a patient's freedom to decide to have a particular medical treatment is limited by the physician's professional assessment of the medical need of this treatment. The question arises: What is the relationship between the professional responsibility of Dutch physicians and the right of Dutch patients to decide for themselves? This question is illustrated by the ongoing national debate in The Netherlands on euthanasia and the growing demand for a further reaching right to self-determination concerning ending one's life. However, contrary to popular belief, not all Dutch ethical debate concerns end-of-life questions.