Living with Dignity: A Pilot Study Implementing Dignity Therapy with Allogeneic Blood or Marrow Transplant Recipients

Dignity Therapy is a relatively novel therapeutic intervention designed to address psychosocial and existential distress among those facing life threatening circumstances. This narrative psychotherapy approach invites patients to reflect and speak about issues that are most important to them and hopes to elicit feelings of purposefulness and autonomy, characteristics that are typically waning when nearing end of life. Dignity Therapy consists of a ten question semi-structured interview designed to integrate themes of accomplishments and sources of pride, things that may feel unsaid, and/or particular lessons or wisdom that the patient hopes to pass on to loved ones. The interview is transcribed, edited with the patient, and provided as a typed “generativity document” to the patient. Dignity Therapy has been empirically validated to lessen symptoms of existential distress in various terminally ill populations. In this pilot study, the dignity therapy intervention was implemented with five members of a novel patient population; those who have undergone an allogeneic blood or marrow stem cell transplant following a diagnosis of blood cancer. These participants engaged in the Dignity Therapy intervention and then filled out a brief feedback questionnaire. It is our hope that this pilot study will serve as a feasibility study to identify if this intervention will be acceptable and meaningful to this novel patient population

Stem Cell Transplantations Between Siblings as Social Phenomena

This open access book offers insights in short- and long-term experiences from families with bone marrow transplantations between minor siblings. It is based on the first extended qualitative study with 17 families about experiences with recent transplants and experiences with transplants up to 20 years in the past. It covers reflections of donors, recipients and other family members, as well as family interactions. Transplantation of bone marrow from one sibling to another who is ill with a blood cancer (such as Leukemia) is a life-saving therapy. Young children however are not in a position to give consent themselves. How should they be adequately included, depending to their age? Which ethical questions are raised for the parents both at the time of treatment and afterwards, and for the medical professionals in clinical and regulatory contexts? For an in-depth discussion of the findings the books brings together a group of leading scholars from the fields of bioethics, family sociology and philosophy of medicine

transplantation through the generations

Biologically, a child is a human being between the stages of birth and puberty. The legal definition of child generally refers to a minor, otherwise known as a person younger than the age of majority (Oxford University Press (Accessed 5th January 2013))

The Legal and Ethical Limits of Consent in High Risk Medical Interventions: An Empirical Study

That a person’s consent is required prior to any medical intervention, is now well established in law, ethics and medical practice, and is the most profound practical manifestation of respect for autonomy, or self-determination in medicine. For consent to be valid a number of conditions need to be satisfied; the person making the decision must have sufficient capacity (competence) to make the decision; they must have been provided with sufficient information about the proposed intervention and about relevant alternatives such that their decision is adequately informed; the decision must be appropriately and specifically authorized. While the person’s consent occupies the central legitimising feature of medical practice, little is known about how consent per se, or its elements, are conceptualised or actualised in high-risk medical settings. Aim The aim of this thesis was to develop a richer understanding of the process of consent to high-risk medical interventions. This issue was explored both theoretically (through the reflection on relevant literature) and empirically through study of the experience of consent in clinical practice. The exemplar of a high-risk medical treatment on which the empirical study was based, is allogeneic haematopoietic stem cell transplantation, referred to in this thesis as HSCT. Method This was a longitudinal qualitative study. Data was gathered from in-depth, semi-structured interviews with those people most intimately involved in the consent process (patients undergoing HSCT, their ‘significant others’, physicians performing HSCT, and other relevant healthcare professionals). Data was thematically analysed in terms of the elements of consent (which were explicitly explored during the interviews), and by reference to those additional concepts that emerged from the participants’ narratives. The accounts provided by the participants were contrasted against contemporary understandings of consent drawn from the relevant empirical and philosophical literature. Findings The results of this study reveal that each one of the elements required for valid consent are challenged in high-risk medical settings. Capacity is often compromised, decisions are enmeshed in social obligations, information disclosure is comprehensive but inevitably limited, understanding is rarely tested and never privileged, and all decisions are made in the shadow of disease and mortality. But the results also reveal that consent remains an important process – not simply because it validates decision-making and manifests respect, but because it increases trust, and builds alliances that maximise adherence, and ensure ‘presence’. Conclusion While consent in medical practice is legally established and morally justified, its realisation in practice is extraordinarily difficult. This is never more so than in high-risk medical settings. In these situations it is necessary to recognize that consent cannot be understood simply by reference to the role it plays in law – but also by acknowledgment of its moral justification, social and relational contexts, and clinical utility

The Legal and Ethical Limits of Consent in High Risk Medical Interventions: An Empirical Study

That a person’s consent is required prior to any medical intervention, is now well established in law, ethics and medical practice, and is the most profound practical manifestation of respect for autonomy, or self-determination in medicine. For consent to be valid a number of conditions need to be satisfied; the person making the decision must have sufficient capacity (competence) to make the decision; they must have been provided with sufficient information about the proposed intervention and about relevant alternatives such that their decision is adequately informed; the decision must be appropriately and specifically authorized. While the person’s consent occupies the central legitimising feature of medical practice, little is known about how consent per se, or its elements, are conceptualised or actualised in high-risk medical settings. Aim The aim of this thesis was to develop a richer understanding of the process of consent to high-risk medical interventions. This issue was explored both theoretically (through the reflection on relevant literature) and empirically through study of the experience of consent in clinical practice. The exemplar of a high-risk medical treatment on which the empirical study was based, is allogeneic haematopoietic stem cell transplantation, referred to in this thesis as HSCT. Method This was a longitudinal qualitative study. Data was gathered from in-depth, semi-structured interviews with those people most intimately involved in the consent process (patients undergoing HSCT, their ‘significant others’, physicians performing HSCT, and other relevant healthcare professionals). Data was thematically analysed in terms of the elements of consent (which were explicitly explored during the interviews), and by reference to those additional concepts that emerged from the participants’ narratives. The accounts provided by the participants were contrasted against contemporary understandings of consent drawn from the relevant empirical and philosophical literature. Findings The results of this study reveal that each one of the elements required for valid consent are challenged in high-risk medical settings. Capacity is often compromised, decisions are enmeshed in social obligations, information disclosure is comprehensive but inevitably limited, understanding is rarely tested and never privileged, and all decisions are made in the shadow of disease and mortality. But the results also reveal that consent remains an important process – not simply because it validates decision-making and manifests respect, but because it increases trust, and builds alliances that maximise adherence, and ensure ‘presence’. Conclusion While consent in medical practice is legally established and morally justified, its realisation in practice is extraordinarily difficult. This is never more so than in high-risk medical settings. In these situations it is necessary to recognize that consent cannot be understood simply by reference to the role it plays in law – but also by acknowledgment of its moral justification, social and relational contexts, and clinical utility

Pulmonary disease, its risk factors and necessity for long-term follow-up care in childhood cancer survivors.

Treatment for childhood cancer puts the young patients at risk to develop adverse health outcomes. These adverse health outcomes can develop acute, already during treatment, or slowly over years to decades after completion of treatment. They can be of transient nature or long-lasting and chronic. Adverse health outcomes can potentially affect every organ system, including the lung. The term late effects is used to describe this heterogeneity of adverse health outcomes. Pulmonary late effects contribute to a higher morbidity and mortality in childhood cancer survivors compared to siblings or the general population

Cancer Immunotherapy and Biological Cancer Treatments

In recent years, biological cancer therapies, including immunotherapy, have moved from the bench to mainstream medical treatments of several types of cancer. The success of these treatments relies on innovative approaches to specifically interfere with molecular targets that are involved in the growth, progression, and spread of malignant cells, or to bypass the tumor evasion of the immune system utilizing the latest advances in cancer vaccine development, formulation, and delivery. This book presents an up-to-date overview of novel cancer biological and immunotherapeutic approaches, including cancer vaccines, mimetic vaccines, monoclonal antibodies, adoptive T-cell transfer, chimeric antigen receptor T- cells, tumor infiltrating lymphocytes, dendritic cells, natural killer cells, immune checkpoint inhibitors, laser ablation, and immune stimulating interstitial laser thermotherapy

Multiple Sclerosis

Multiple sclerosis (MS) offers important challenges to understanding its complex genetics and molecular and immunological mechanisms, which eventually lead to relapsing and progressive clinical forms and a constellation of clinical manifestations. Along with the progress in knowledge, disease-modifying treatments and new therapeutic molecules have made an impact on the prognosis of the disease. Essential in the diagnostic identification process of MS is the differentiation of this major demyelinating disease with other inflammatory CNS disorders, including Neuromyelitis Optica and MOG antibody disease. MS is more prevalent in women; therefore, pregnancy and post-partum hormonal and immunological changes typically affect the clinical behavior of the disease. This Special Issue of Biomedicines addresses recent advances in the mechanistic genetic and immunological processes of MS, opening more options to future studies and to the consideration of further therapeutic possibilities. The issue discusses the application of modern therapies, including monoclonal antibodies, some still in the process of complete development, and the current strategies managing progressive MS. The aim of this issue is to stimulate basic and clinical research and promote observations on the ever-expanding and complex field of MS. Advancement in the understanding of the mechanisms and the clinical characterizations of this disease should result in improved therapeutic outcomes that reduce neurological and cognitive disability commonly associated with progressive disease