Evert van Leeuwen

Existential Loneliness and end-of-life care: A Systematic Review

Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life.

Reflective Equilibrium and Empirical Data: Third Person Moral Experiences in Empirical Medical Ethics

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached.

Decision making on organ donation: the dilemmas of relatives of potential brain dead donors

BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments (lack of time, information etc.). Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants (most non-donor families) stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation.

How Outpatient Palliative Care Teleconsultation Facilitates Empathic Patient-Professional Relationships: A Qualitative Study

Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists. Methods This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Results The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients’ daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief. Conclusions Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice.

Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions

BackgroundAudio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking.This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies.MethodsA semi-structured expert meeting and qualitative, open interviews were deployed to explore professionals’ assumptions and wishes, which are considered to contain latent presumptions about the practice’s physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach.ResultsRespondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as “real contact” with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional “gray” network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists.ConclusionsProfessionals assume teleconsultation co-defines a new patient–professional relationship by extending hospital-based caregivers’ perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities.

Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives

BackgroundIn the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.MethodsA content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.ResultsRelatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.ConclusionHealthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

Telemedicine’s Potential to Support Good Dying in Nigeria: A Qualitative Study

Objectives This qualitative study explores Nigerian health care professionals’ concepts of good dying/a good death and how telemedicine technologies and services would fit the current Nigerian palliative care practice. Materials and Methods Supported by the Centre for Palliative Care Nigeria (CPCN) and the University College Hospital (UCH) in Ibadan, Nigeria, the authors organized three focus groups with Nigerian health care professionals interested in palliative care, unstructured interviews with key role players for palliative care and representatives of telecom companies, and field visits to primary, secondary and tertiary healthcare clinics that provided palliative care. Data analysis consisted of open coding, constant comparison, diagramming of categorizations and relations, and extensive member checks. Results The focus group participants classified good dying into 2 domains: a feeling of completion of the individual life and dying within the community. Reported barriers to palliative care provision were socio-economic consequences of being seriously ill, taboos on dying and being ill, restricted access to adequate medical–technical care, equation of religion with medicine, and the faulty implementation of palliative care policy by government. The addition of telemedicine to Nigeria’s palliative care practice appears problematic, due to irregular bandwidth, poor network coverage, and unstable power supply obstructing interactivity and access to information. However, a tele-education ‘lite’ scenario seemed viable in Nigeria, wherein low-tech educational networks are central that build on non-synchronous online communication. Discussion Nigerian health care professionals’ concepts on good dying/a good death and barriers and opportunities for palliative care provision were, for the greater part, similar to prior findings from other studies in Africa. Information for and education of patient, family, and community are essential to further improve palliative care in Africa. Telemedicine can only help if low-tech solutions are applied that work around network coverage problems by focusing on non-synchronous online communication.

Hype and expectations in tissue engineering

Scientific progress and the development of new technologies often incite enthusiasm, both in scientists and the public at large, and this is especially apparent in discussions of emerging medical technologies, such as tissue engineering (TE). Future-oriented narratives typically discuss potential applications with much hype and expectations. In this article, we analyze the discourse on TE, its history and the promises present in the discourse surrounding it. Subsequently, we regard discussions about implantable bioartificial kidneys, and consider the concepts of hype and expectations in TE in general. Finally, we discuss what ethically responsible choices should be made in discussing TE to adequately deal with the scientific reality and public expectations surrounding this technology.

Philosophy of Medical Practice: A Discursive Approach

In spite of the seminal work A Philosophical Basis of Medical Practice, the debate on the task and goals of philosophy of medicine still continues. From an European perspective it is argued that the main topics dealt with by Pellegrino and Thomasma are still particularly relevant to medical practice as a healing practice, while expressing the need for a philosophy of medicine. Medical practice is a discursive practice which is highly influenced by other discursive practices like science, law and economics. Philosophical analysis of those influences is needed to discern their effect on the goals of medicine and on the ways in which the self-image of man may be changed. The nature of medical practice and discourse itself makes it necessary to include different philosophical disciplines, like philosophy of science, of law, ethics, and epistemology. Possible scenarios of euthanasia and the human genome project in the USA and Europe are used to exemplify how philosopy of medicine can contribute to a realistic understanding of the problems which are related to the goals of medicine and health care.

Teleconsultation for integrated palliative care at home: A qualitative study

Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. Aim: This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. Design: This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. Setting/participants: A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24–85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Results: Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Conclusion: Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were less common but stimulated patient-centered care dialogues.