Home-Based Telemental Health: A Proposed Privacy and Safety Protocol and Tool.

Objectives: To describe the development of a protocol and practical tool for the safe delivery of telemental health (TMH) services to the home. The COVID-19 pandemic forced providers to rapidly transition their outpatient practices to home-based TMH (HB-TMH) without existing protocols or tools to guide them. This experience underscored the need for a standardized privacy and safety tool as HB-TMH is expected to continue as a resource during future crises as well as to become a component of the routine mental health care landscape. Methods: The authors represent a subset of the Child and Adolescent Psychiatry Telemental Health Consortium. They met weekly through videoconferencing to review published safety standards of care, existing TMH guidelines for clinic-based and home-based services, and their own institutional protocols. They agreed on three domains foundational to the delivery of HB-TMH: environmental safety, clinical safety, and disposition planning. Through multiple iterations, they agreed upon a final Privacy and Safety Protocol for HB-TMH. The protocol was then operationalized into the Privacy and Safety Assessment Tool (PSA Tool) based on two keystone medical safety constructs: the World Health Organization (WHO) Surgical Safety Checklist/Time-Out and the Checklist Manifesto.Results: The PSA Tool comprised four modules: (1) Screening for Safety for HB-TMH; (2) Assessment for Safety During the HB-TMH Initial Visit; (3) End of the Initial Visit and Disposition Planning; and (4) the TMH Time-Out and Reassessment during subsequent visits. A sample workflow guides implementation. Conclusions: The Privacy and Safety Protocol and PSA Tool aim to prepare providers for the private and safe delivery of HB-TMH. Its modular format can be adapted to each site's resources. Going forward, the PSA Tool should help to facilitate the integration of HB-TMH into the routine mental health care landscape.

Ethical sensitivity and perceptiveness in palliative home care through co-creation.

BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient's quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients' and their relatives' needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. AIM: The aim of this study was to explore nurses' experiences of caring encounters and co-creation in palliative home care from an ethical perspective. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. FINDINGS: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient's wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. DISCUSSION: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses' ethical competence. CONCLUSION: Patients' dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients' perspectives should be the focus of future research.

Ethical issues related to the use of gerontechnology in older people care: A scoping review.

BACKGROUND: Demographic trends indicate growth of population aged 65 and older in Western countries. One of the greatest challenges is to provide high-quality care for all. Technological solutions designed for older people, gerontechnology, can somewhat balance the gap between resources and the increasing demand of healthcare services. However, there are also ethical issues in the use of gerontechnology that need to be pointed out. PURPOSE: To describe what ethical issues are related to the use of gerontechnology in the care of community-dwelling older people. METHODS: A scoping review was performed to identify and analyse studies concerning ethical issues when using gerontechnology in the home care of older people. The literature search was limited to studies published after 1990 and addressed to the electronic databases CINAHL, PubMed, Cochrane, Medic, IEEE Explore and Web of Science. The search was performed in July-August 2018. Data from empirical studies were analysed using thematic analysis. ETHICAL CONSIDERATIONS: This scoping review was conducted in accordance with good scientific practice. The work of other researchers was respected and cited appropriately. RESULTS: A total of 17 studies were identified. Two main themes were found. 'Balancing between the benefits of using gerontechnology and the basic rights of older people', consisted of the subthemes safety, privacy and autonomy. The other main theme, 'Gerontechnology as a risk of insecurity for older people', included the subthemes fear of losing human contact and concern and fear. Surveillance and monitoring technologies were mainly studied. CONCLUSION: These results suggest that there may be ethical issues related to the use of gerontechnology and they must therefore be taken into consideration when implementing technology in the care of community-dwelling older people.

A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare.

Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients' drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses' profession in the palliative field and help them implement palliative care philosophy in practice.

A feminist phenomenology on the emotional labor and morality of live-in migrant care workers caring for older people in the community.

BACKGROUND: Global societal changes, such as increasing longevity and a shortage of family caregivers, have given rise to a popular worldwide trend of employing live-in migrant care workers (MCWs) to provide homecare for older people. However, the emotional labor and morality inherent in their interactions with older people are largely unknown. The aim of the present study is to understand the corporeal experiences of live-in migrant care workers in the delivery of emotional labor as seen in their interactions with older people by: (1) describing the ways by which they manage emotional displays with older people; and (2) exploring their morality as enacted through emotional labor. METHODS: We performed a secondary analysis drawing on feminist phenomenology to thematically analyze data from interviews with 11 female MCWs. Follow-up interviews were conducted with 10 participants. The participants had two to 15 years of experience in caring for older people in their homes in Hong Kong. RESULTS: Performing emotional labor by suppressing and inducing emotions is morally demanding for live-in MCWs, who experience socio-culturally oppressive relationships. However, developing genuine emotions in their relationships with older people prompted the MCWs to protect the interests of older people. Through demonstrating both fake and genuine emotions, emotional labor was a tactic that live-in MCWs demonstrated to interact morally with older people. CONCLUSIONS: Emotional labor allowed live-in MCWs to avoid conflict with older people, and to further protect their own welfare and that of others. This study highlights the significance of empowering live-in MCWs by training them in ways that will help them to adapt to working conditions where they will encounter diverse customs and older people who will develop an increasing dependence on them. Thus, there is a need to develop culturally appropriate interventions to empower live-in MCWs to deliver emotional labor in a moral manner.

Meeting in a 'free-zone': Clinical ethical support in integrated heart-failure and palliative care.

BACKGROUND: Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams. OBJECTIVE: Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare. METHOD: The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis. RESULTS: The CES was found to offer possibilities for meeting in an ethical 'free-zone' where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints. CONCLUSION: Participating in CES was experienced as meeting in an ethical 'free-zone' and seemed to be a means of facilitating integration of palliative and heart-failure care.

[Withdrawal of chronic mechanical ventilation at home: coordination, organisation and implementation]. / Beëindiging van chronische beademing in de thuissituatie.

In the Netherlands, an increasing number of patients are dependent on domiciliary ventilation. General practitioners and elderly care physicians caring for these patients are increasingly confronted with problems related to chronic ventilation. Most patients die due to progression of respiratory failure, however, patients may ask their physician to electively withdraw their assisted ventilation. According to the Dutch Medical Treatment Contracts Act, withdrawal of domiciliary ventilation at the request of a patient constitutes normal medical care and concerns neither the assessment of, nor the compliance with, a request for euthanasia. Currently, there is no Dutch guidance or guideline containing practical advice regarding the medical, ethical, organisational and supportive aspects of withdrawal of domiciliary ventilation. This paper addresses the planning necessary for the patient and between treating professionals, for the organisation and implementation of withdrawal of domiciliary ventilation at the patient's home, a nursing home or hospice.

Home Extubation in a Neonate.

End-of-life care for many infants involves the withdrawal of mechanical ventilation. Usually this takes place in the hospital environment, but sometimes parents request that their infant dies at home. Facilitating this has significant practical and resource implications and raises both logistical and ethical questions. In this article, we report a neonatal case involving home extubation, explaining the processes involved as well as providing an ethical context.

Maintaining Professional Nursing Boundaries in the Pediatric Home Care Setting.

Pediatric home care nurses often become a valuable part of the family unit, and this can blur the professional boundary between nurse and patient. Home care professionals must educate themselves as well as patients and family members about the integrity of their professional relationship, and prevent boundary crossing before it occurs. This article highlights four case studies that describe situations of boundary crossing that could have been managed differently. Strategies for maintaining professional boundaries with patients and their families are provided.

ETHICS OF SMART HOUSE WELFARE TECHNOLOGY FOR OLDER ADULTS: A SYSTEMATIC LITERATURE REVIEW.

BACKGROUND: The University College of Southeast Norway has an on-going project to develop a smart house welfare system to allow older adults and people with disabilities to remain in their homes for as long as they wish in safe, dignified, living conditions. OBJECTIVES: This article reviews reported ethical challenges to implementing smart houses for older adults. METHODS: A systematic literature review identified twenty-four articles in English, French, Spanish, and Norwegian, which were analyzed and synthesized using Hofmann's question list to investigate the reported ethical challenges. RESULTS: Smart houses offer a promising way to improve access to home care for older adults and people with disabilities. However, important ethical challenges arise when implementing smart houses, including cost-effectiveness, privacy, autonomy, informed consent, dignity, safety, and trust. CONCLUSIONS: The identified ethical challenges are important to consider when developing smart house systems. Due to the limitations of smart house technology, designers and users should be mindful that smart houses can achieve a safer and more dignified life-style but cannot solve all the challenges related to ageing, disabilities, and disease. At some point, smart houses can no longer help persons as they develop needs that smart houses cannot meet.

AN INTEGRATED PERSPECTIVE ON THE ASSESSMENT OF TECHNOLOGIES: INTEGRATE-HTA.

OBJECTIVES: Current health technology assessment (HTA) is not well equipped to assess complex technologies as insufficient attention is being paid to the diversity in patient characteristics and preferences, context, and implementation. Strategies to integrate these and several other aspects, such as ethical considerations, in a comprehensive assessment are missing. The aim of the European research project INTEGRATE-HTA was to develop a model for an integrated HTA of complex technologies. METHODS: A multi-method, four-stage approach guided the development of the INTEGRATE-HTA Model: (i) definition of the different dimensions of information to be integrated, (ii) literature review of existing methods for integration, (iii) adjustment of concepts and methods for assessing distinct aspects of complex technologies in the frame of an integrated process, and (iv) application of the model in a case study and subsequent revisions. RESULTS: The INTEGRATE-HTA Model consists of five steps, each involving stakeholders: (i) definition of the technology and the objective of the HTA; (ii) development of a logic model to provide a structured overview of the technology and the system in which it is embedded; (iii) evidence assessment on effectiveness, economic, ethical, legal, and socio-cultural aspects, taking variability of participants, context, implementation issues, and their interactions into account; (iv) populating the logic model with the data generated in step 3; (v) structured process of decision-making. CONCLUSIONS: The INTEGRATE-HTA Model provides a structured process for integrated HTAs of complex technologies. Stakeholder involvement in all steps is essential as a means of ensuring relevance and meaningful interpretation of the evidence.

Smart homes, private homes? An empirical study of technology researchers' perceptions of ethical issues in developing smart-home health technologies.

BACKGROUND: Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology's potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought to contribute to dialogue between ethics and the engineering community. METHODS: Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants' consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. RESULTS: Two overarching themes emerged: in 'Privacy', researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In 'Choice', researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. CONCLUSIONS: The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of (bio)ethics as a critical partner to smart-home engineering.

Evaluación del grado de información de los pacientes al ser incluidos en el programa de cuidados paliativos domiciliarios / Evaluation of the degree of patient information to be included in the home-based palliative care program

El hecho de comunicar a un paciente su diagnóstico cuando éste es desfavorable, se convierte en un asunto sumamente humano. La bioética y la legislación protege de este derecho a la información. El objetivo del estudio es evaluar el grado de información de los pacientes al ser incluidos en el programa de cuidados paliativos domiciliarios. Se ha realizado un estudio cuantitativo, descriptivo, retrospectivo, transversal. Año de estudio 2012 en pacientes diagnosticados de procesos de enfermedad avanzada terminal valorados por el Equipo de Soporte de Atención Paliativa Domiciliaria, de la Dirección Asistencial Norte de la Comunidad de Madrid. La muestra fue de 184 pacientes. Analizando la relación entre el grado de información y la edad categorizada, existiendo diferencias estadísticamente significativas (p<0,01) siendo el grupo de edad en el que hay más pacientes correctamente informados el de ≤65 años con un porcentaje del 95,3%. Estaban más informados los pacientes con un Pfeiffer <4 en el 89,3% de los casos (p< 0,01). Más de la mitad de los pacientes habían recibido información acerca de su enfermedad y en mayor proporción completa. Con más frecuencia fueron varones con edad comprendida entre 76 y 85 años, con patología oncológica, presentando mal estado funcional pero no presentaron deterioro cognitivo. La información de la familia era mayor que la del propio paciente y en mayor grado era completa. Los factores relacionados con un mejor nivel de información fueron la edad ≤65años y la ausencia de deterioro cognitivo. El lugar predominante de fallecimiento en el seguimiento fue el domicilio

The fact of communicating to a patient his or her diagnosis when it is unfavourable, this becomes a really human issue. The bioethics and the legislation protect this right of information. The aim of this study is to evaluate the degree of information of patients when they are included in the home palliative care program. This is a quantitative, descriptive, retrospective and transversal study. The year of the study is 2012 in patients diagnosed with advanced terminal illnesses processes valued by the Team of Home Palliative Attention Support, of the North Welfare Direction of the Community of Madrid. The sample size was 184 patients. Analysing the relationship between the degree of information and the age, existing differences statistically significant (p<0,01) being the group in which there are more patients correctly informed the one were the age is ≤65 years old with a percentage of 95,3%. The patients with a Pfeiffer <4 in the 89,3% of the cases (p<0,01) were more informed. More than half the patients had received some information about their illness and within that half there is higher proportion of people who received complete information. The more frequent were male patients with age between 76 and 85 with oncologic pathology, showing a bad functional condition but didn’t present cognitive deterioration. The information received by the family was more complete that the one the own patient knew. The factors related with a better degree of information were being younger than 65 and a lack of cognitive deterioration. The predominant place of the decease in the monitoring of the patient was the their home

[Neonatal palliative care at home: Contribution of the regional pediatric palliative care team]. / Soins palliatifs néonatals à domicile : apport des équipes régionales de soins palliatifs pédiatriques.

The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.