Ethical considerations for the utilization of tele-health technologies in home and hospice care by the nursing profession

Home care, including hospice care, is a growing component of the current healthcare system and pertains to care services that are provided to individuals, their family members, and caregivers in their own residence. Both domains face funding limitations as life expectancy and the segment of the population older than 65 years increase. Tele-health, defined as the use of advanced telecommunication technologies to enable communication between patients and healthcare providers separated by geographic distance, is perceived as a concept that can enhance both home and hospice care and address some of the current challenges. This article discusses ethical challenges associated with the utilization of tele-health technologies by the nursing profession in the home setting. These factors form a framework for the ethical considerations that result from the introduction of these technologies in nursing practice. Specifically, the article discusses the issue of privacy and confidentiality of patient data, informed consent, equity of access, promoting dependency versus independence, the lack of human touch and the impact of technology on the nurse-patient relationship, and the medicalization of the home environment. These issues constitute a road map both for nursing practitioners who are aiming to provide an efficient delivery of services in the home and for nursing administrators who are asked to make judgments about the use of tele-health technology as a supplement to traditional care and as a cost-saving tool.     

The importance of ethical aspects when implementing eHealth services in healthcare: A discussion paper

Aim

The aim of this paper was to discuss the importance of ethical aspects when implementing eHealth services in health care.

Background

Challenges in healthcare today include a growing older population and, as a consequence, an increased need for healthcare services. One possible solution is the use of eHealth services.

Design

Discussion paper.

Data sources

Research literature published from 2000–2017 in CINAHL, PubMed and Scopus.

Implications for nursing

Implementing eHealth services in health care involves ethical challenges where different technologies can solve different problems in different ways. eHealth services should therefore be developed and implemented based on the patient's specific needs and conditions for use and in accordance with the healthcare professionals' presumption to provide high‐quality care.

Conclusion

To preserve patients' integrity, dignity and autonomy, healthcare professionals must include ethical aspects when implementing and using eHealth services in health care. Healthcare professionals have to take responsibility for the eHealth services introduced, explaining why and how they are implemented based on a person‐centred approach. More knowledge is needed about ethical aspects when implementing eHealth services to improve the quality of care.     

Outcomes of care from the professional's perspective.

Patient satisfaction is considered an important indicator of the quality of care provided by a home healthcare agency. Increased emphasis is now placed on patient outcomes of care by certification and accreditation standards. This detailed analysis of the outcomes of care by the patient, the family, and the professionals through the use of unsolicited patient letters of commendation and the clinical record did not reveal any specific pattern. The visiting nurse association's home care services are available on a nondiscriminatory basis. This fact is noted in the agency's literature and policy manual. The data analysis for this project supports this policy statement. Patients, family members, and a physician wrote letters of commendation regardless of the LOS, payer source, total charges, time spent with the patient, and personnel who provided the care.     

AIDS and Confidentiality

AIDS has created many challenges for those who provide care for AIDS patients. One major challenge has been the request of many public officials for healthcare professionals to abandon the traditional view of confidentiality and to reveal AIDS patients' names. This ethical dilemma is explored and some ethical theories are presented as possible resolutions. The conclusion presented is that healthcare professionals must recognize that the power of the healthcare system over an AIDS patient is immense. Therefore, healthcare professionals must make a commitment to protect the patient's right to privacy by preventing any unauthorized disclosure at all costs.     

Interprofessional collaboration in a community virtual ward: A focus group study

Background

The problem of a lack of nurses is expected to worsen in the future. With an ever-increasing number of elderly patients with multimorbidity and a shortage of healthcare professionals, primary care must innovatively organise their services to offer more sustainable healthcare services. Organising healthcare services in a community virtual ward has been found to improve the quality of life for vulnerable elderly populations.

Aim

The aim of the study was to explore healthcare professionals' experiences of interprofessional collaboration in care for patients with multimorbidity in a community virtual ward in the Norwegian context.

Methods

Focus group interviews were conducted in this qualitative exploratory study. A purposive sample of 17 healthcare professionals working in a community virtual ward in Norway was interviewed. Data were analysed using thematic analysis.

Results

The study results show that healthcare professionals recognise a need for patient involvement in the community virtual ward to offer more sustainable healthcare services at home. Furthermore, the results show how healthcare professionals experience the use of assessment tools and whiteboard meetings as useful tools for facilitating interprofessional collaboration. The study results also describe how interprofessional and holistic follow-up with patients with multimorbidity contributes to increased focus on health promotion in the community virtual ward.

Conclusion

We found that interprofessional collaboration in community virtual wards may be a sustainable way of organising healthcare services for patients with multimorbidity living at home. Interprofessional collaboration with a patient-centred and health promotion approach, seems to increase the quality of the follow-up for patients with multimorbidity living at home. Additionally, mutual interprofessional trust and respect seems to be essential for making use of the unique expertise of different professions in the follow-up for patients with multimorbidity. In the future, both the patient's voice and opinion of their next of kin should be considered in the development of more sustainable homecare services.     

Users' views on palliative care services: ethical implications

This article is based on the findings of a study that elicited the views of terminally ill patients (n = 15), their carers (n = 10) and bereaved carers (n = 19) on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field.     

Planning for successful home mechanical ventilation

Home mechanical ventilation has evolved to permit discharge of patients on portable negative or positive pressure mechanical ventilators. Assessment of the patient for home discharge is initiated by a multidisciplinary team. The nurse, physician, social worker, respiratory therapist, speech therapist, occupational therapist, home health nursing agency, durable medical equipment supplier, and caregivers constitute the team. The crucial links to a successful patient discharge are an involved family and a well-developed plan of care, although patient finances also are important. The nurse develops, coordinates, and implements the teaching plan over a period of 2 or more weeks. The home caregivers provide total care for the patient several days before discharge. The home health agency and the durable medical equipment supplier provide services which ease the transition of care from hospital to home. One alternative to home discharge is placement in an extended care facility.     

Withdrawal of mechanical ventilation in the home: a case report and review of the literature

Once it has been determined that aggressive medical treatment can no longer meet the goals of care for a ventilated patient, the process of withdrawing mechanical ventilation begins. This is a challenging clinical situation, drawing on the treating physician's skills including clinical decision making with consideration of the ethical and legal domains of practice, high level communication skills, intensive symptom control for the dying patient, and support for families throughout the episode, including bereavement. Central to the success of this process is recognition and respect for the needs and wishes of the patient and family. This case reports on the withdrawal of mechanical ventilation from a conscious patient in their own home, leading to death, following a prolonged hospital admission.     

Missing the point: Quality-driven healthcare institutions may mistakenly disregard their role in nursing and medical education

Aligned with international standards, the UAE Government and many other developing countries in the region (GCC and MENA) have started to implement strict quality improvement initiatives to develop their healthcare systems. Most of these initiatives are geared toward meeting patient satisfaction and avoiding circumstances or events that would dissatisfy patients. It is also used to measure healthcare institution performance, assess efficiency and determine their funding and reimbursement. With this emphasis on quality, it is also important for healthcare organizations to fulfill their other functions. Among the most important is performing their teaching role to prepare future healthcare professionals, and attracting and retaining healthcare professionals. These roles are also a paramount for a quality, sustained healthcare system. However, clinical educators and managers reflect on how these roles seem to be frequently missed or at least compromised while applying the quality assurance measures in the region developing countries. This reflective paper discusses this concern and suggests possible strategies that may help overcome this challenge and thus contributing to the achievement of the quality goal of the service in a more comprehensive and sustainable manner. The similarities between the UAE healthcare system and neighboring Gulf Cooperation Council and the Middle East/North African countries mean these challenges and solutions may resonate with these countries and support the implementation of effective health services in these countries as well.     

Influencing factors of place of death among home care patients with cancer in Taiwan

Multiple factors, including personal and cultural values, physical and medical factors, and various healthcare systems' forces, influence the place of death of patients with cancer. The purpose of this retrospective chart audit study was to examine the influence of sociodemographic factors, family support, patient functioning, and care needs on the place of death for patients with cancer served by a home care program in Taiwan.Among the 264 study patients, 182 (69%) died at home and 82 (31%) died in the hospital. Significant differences were found between patients dying at home or in a hospital predominantly in the categories of patient functioning and care needs. From the multivariate logistic regression model, home care patients with cancer who were never rehospitalized, who received more home care visits, and who were referred to home care services at the greatest functionally dependent status and with pain were more likely to die at home. Overall, this model could accurately classify 78% of the place of death, which is higher than other published studies. Understanding factors that influence place of death of terminally ill patients with cancer allow healthcare professionals to modify healthcare systems and tailor effective interventions to help patients die at the place they prefer.     

The decision-making process of transferring patients home to die from an intensive care unit in mainland China: A qualitative study of family members’ experiences

ObjectivesTo map the decision-making process of family members involved in transferring a critically ill patient home to die from an intensive care unit in mainland China and to explore the experiences of those family members.DesignA constructivist qualitative study.SettingOne hospitals intensive care unit in Southeast China.MethodsThirteen adult family members (of ten patients) who participated in decision-making related to transferring a relative home to die from the intensive care unit were purposively selected. Data were collected via interviews and analysed applying thematic analysis.FindingsA two-stage decision-making process was identified. Family decision-making was mediated by factors including: accepting the impending death and hope that the patient would not die; time pressures in which decisions had to be made, and the challenges of meeting cultural expectations of a home death. Transfer home was a family-centred decision constrained by a gender-based hierarchy restricting the involvement of different family members.ConclusionThe stages and key factors in the decision-making process of family members when involved in transferring a patient home to die from an intensive care unit in China are rooted and informed by cultural expectations and limits in the current healthcare system regarding end-of-life care options. Understanding the climate in which family members must make decisions will facilitate supportive interventions to be implemented by healthcare professionals. Further empirical research is needed to explore family members’ needs when the patient has been transferred and dies at home in mainland China.Implications for Clinical PracticeHealthcare professionals need to understand the challenges family members face when deciding to transfer a relative home to die from an intensive care unit. For example time pressures can limit the choices of family members so that to provide them with timely, ongoing, realistic updates for a greater involvement of family members in generating end of life care plans could be beneficial.¹     

Home mechanical ventilation

Recently, interest in the use of mechanical ventilation outside the hospital setting has been increasing. Patients with various types of chronic respiratory failure may benefit from this approach. Evaluation for long-term mechanical ventilation necessitates assessment of the underlying disease process, the goals of the medical team, and the needs of the patient and family. Externally applied negative-pressure devices can provide adequate ventilation for many patients, particularly those with neuromuscular diseases. Positive-pressure ventilation by means of a tracheostomy provides greater control of the airway, allows adjustment of tidal volume and minute ventilation, and may be delivered by portable equipment. Ongoing care and support services in the home must be provided. A variety of mechanical devices and new techniques of ventilator support have made home mechanical ventilation a realistic option for long-term care.     

Terminal weaning from mechanical ventilation: ethical and practical considerations for patient management.

Decisions to withdraw life-sustaining therapy are being made more often as patients and healthcare providers increase their awareness of patient rights. The process of withdrawal of mechanical ventilation must be conducted in a humane fashion. An understanding of the ethical, legal and practical considerations for patient management during this type of intervention will enhance the ability of the healthcare provider to participate.     

An Interdisciplinary Home Healthcare Program for Patients with Parkinson's Disease

The long-term treatment of Parkinson's disease presents a special challenge in the home healthcare setting. This article describes a successful interdisciplinary home healthcare program that addresses the special needs of patients with Parkinson's disease and associated disorders. The program, which combines skilled assessment, professional healthcare services, patient and family education, and case management to optimize patient outcomes, has become a national model for agencies hoping to start or expand Parkinson's disease programs.     

Ethical issues in practice: A survey of home‐visiting nurses in Japan

Aim: The purposes of this study were to identify specific components and frequencies of ethical issues that home‐visiting nurses encountered in their practice, relationships between ethical issues and demographic data, and experience of ethics education and workplace environment. Methods: A self‐administered questionnaire was distributed to home‐visiting nurses in Japan. Usable data (1961) were analyzed. Results: Item and exploratory factor analysis for the frequency of encountering ethical issues revealed: (i) concern about respecting client or relationships with relevant professionals; (ii) differences in treatment or care‐taking views among home‐visiting nurse and client and family, or relevant professionals; and (iii) discrepancy of intention between family and client or home‐visiting nurse. All factors were significantly positively related to the current position, duration of working experience as a home‐visiting nurse, and type of nursing education; age was significantly negatively related. Home‐visiting nurses noted that programmed continuing education systems and staff‐training programs were not sufficiently available. Conclusion: The findings of this study indicated the characteristics of ethical issues that home‐visiting nurses encountered in their practice and insufficient continuing education system including ethics education. Ethics education programs tailored to home‐visiting nurses ethical concerns and traits and continuing education systems are needed.     

The San Diego County wildfires: perspectives of healthcare providers [corrected].

The wildfires of October 2003 burned a total of 10% of the county of San Diego, California. Poor air quality contributed to an increased number of patients seeking emergency services, including healthcare providers affected by smoke and ash in hospital ventilation systems. Two large hospitals with special patient populations were threatened by rapidly approaching fires and had to plan for total evacuations in a very short time frame. A number of medical professionals were forced to prioritize responding to the hospital's call for increased staff during the disaster and the need to evacuate their own homes.     

BOOK REVIEWS

Psychiatric home healthcare nurses (PHHNs) work directly with clients and their families in the community and serve as consultants to other home health nurses when concerns of mental health arise. They must be able to identify areas of possible or actual family violence or abuse and intervene appropriately. They must be cognizant of the laws regarding abuse reporting in their states. Decisions to report abuse are practical and moral and, when combined with legal imperatives, create ethical dilemmas for healthcare professionals. Guidelines are presented to help PHHNs understand the complex issues associated with mandatory reporting of abuse.     

Mandatory reporting of abuse: practical, moral, and legal issues for psychiatric home healthcare nurses

Psychiatric home healthcare nurses (PHHNs) work directly with clients and their families in the community and serve as consultants to other home health nurses when concerns of mental health arise. They must be able to identify areas of possible or actual family violence or abuse and intervene appropriately. They must be cognizant of the laws regarding abuse reporting in their states. Decisions to report abuse are practical and moral and, when combined with legal imperatives, create ethical dilemmas for healthcare professionals. Guidelines are presented to help PHHNs understand the complex issues associated with mandatory reporting of abuse.     

Tracheotomy and children with spinal muscular atrophy type 1: ethical considerations in the French context

Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child's life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. When professionals assess the resulting life for the child and family, they sometimes fear it will result in unreasonably excessive care. The aim of this article is to present an analysis of ethical arguments that could support or oppose the provision of invasive ventilation in this population. This examination is particularly relevant as France is one of the few countries performing tracheotomies and mechanical ventilation for this condition.