How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies 'avoid thinking about end-of-life' and its counterpart, 'planning ahead to be well-prepared,' and differentiated the latter into the patterns 'withdrawing from life and taking precautions against life-prolongation' and 'searching for a new meaning in life and preparing for life-sustaining treatment'.
View Article and Find Full Text PDFDtsch Med Wochenschr
March 2024
In everyday clinical practice relatives are often perceived as an additional burden, as a problem. Relatives appear, for example, to be overwhelmed, desperate, (co-)affected, demanding, or in some cases even (verbally) abusive. Alongside sympathetic and co-operative relatives, others are perceived as annoying and not very constructive.
View Article and Find Full Text PDFThe process recommendations of the Ethics Section of the German Interdisciplinary Association for Intensive Care and Emergency Medicine (DIVI) for ethically based decision-making in intensive care medicine are intended to create the framework for a structured procedure for seriously ill patients in intensive care. The processes require appropriate structures, e.g.
View Article and Find Full Text PDFIntroduction: At first glance, human and (companion animal) veterinary medicine share challenging processes in end-of-life (EOL) decision-making. At the same time, treatment options in both professions are substantially different. The potential of an interdisciplinary exchange between both fields has been neglected by empirical research so far.
View Article and Find Full Text PDFVeterinary and human medicine share the challenges of end-of-life decisions. While there are legal and practical differences, there might be parallels and convergences regarding decision-making criteria and reasoning patterns in the two disciplines. In this online survey, six variants of a fictitious thought experiment aimed at pointing out crucial criteria relevant for decision-making within and across both professional fields.
View Article and Find Full Text PDFAmyotrophic lateral sclerosis (ALS) leads to death on average 2-4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options? (2) What are the challenges for all involved in decision making and communication about this topic? To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS.
View Article and Find Full Text PDFMed Klin Intensivmed Notfmed
May 2022
The treatment situation in intensive care is characterised by a specific asymmetry in the relationship between patients and the team: Patients are particularly dependent on their environment and often show impaired consciousness and capacity to consent. This facilitates the use of coercion or enables and/or provokes it. The aim of this recommendation is to show ways to recognise patients with their wishes and needs and to integrate them into treatment concepts in the intensive care unit in order to reduce and avoid coercion whenever possible.
View Article and Find Full Text PDFStandard views of good death in human and veterinary medicine considerably differ from one another. Whereas the good death ideal in palliative medicine emphasizes the positive aspects of non-induced dying, veterinarians typically promote a quick and painless killing with the aim to end suffering. Recent developments suggest a convergence of both professions and professional attitudes, however.
View Article and Find Full Text PDFBMJ Support Palliat Care
September 2021
Background: Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon.
Objectives: Our aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options.
Objectives: In 2016, we invited interested citizens to participate in the "ethics university on regenerative medicine" at Hannover Medical School. The present study analyses if and how this discursive and informative event inspired participants to form their own opinion on the issues at hand and to develop their general ethics literacy.
Methods: The "ethics university" was performed twice in 2016; each run consisted of four single consecutive events.
In view of the globally evolving Coronavirus Disease (COVID-19) pandemic, German hospitals rapidly expanded their intensive care capacities. However, it is possible that even with an optimal use of the increased resources, these will not suffice for all patients in need. Therefore, recommendations for the allocation of intensive care resources in the context of the COVID-19 pandemic have been developed by a multidisciplinary authors group with support of eight scientific medical societies.
View Article and Find Full Text PDFIn view of the globally evolving coronavirus disease (COVID-19) pandemic, German hospitals rapidly expanded their intensive care capacities. However, it is possible that even with an optimal use of the increased resources, these will not suffice for all patients in need. Therefore, recommendations for the allocation of intensive care resources in the context of the COVID-19 pandemic have been developed by a multidisciplinary group of authors with the support of eight scientific medical societies.
View Article and Find Full Text PDFThe aim of this study was to develop a protocol for the authentication of truffles using inductively coupled plasma mass spectrometry. The price of the different truffle species varies significantly, and because the visual differentiation is difficult within the white truffles and within the black truffles, food fraud is likely to occur. Thus, in the context of this work, the elemental profiles of 59 truffle samples of five commercially relevant species were analyzed and the resulting element profiles were evaluated with chemometrics.
View Article and Find Full Text PDFMoral stress is a major concern in veterinary practice. Often, it is associated with the challenges in end-of-life situations. Euthanasia, however, is also meant to bring relief to animal patients and their owners.
View Article and Find Full Text PDFAnasthesiol Intensivmed Notfallmed Schmerzther
October 2019
Anasthesiol Intensivmed Notfallmed Schmerzther
July 2019
Patients' rights need to be protected, particularly if the patient is unconscious or otherwise unable to consent. According to German law, a legal proxy is mandatory. Spouses and adult children do not automatically function as legal proxies.
View Article and Find Full Text PDFAnasthesiol Intensivmed Notfallmed Schmerzther
July 2019
It is legally required to determine and respect patient preferences and wishes as much as possible under the circumstances given. This also applies to emergency medicine and intensive care, particularly if a patient is unconscious and is not able to give his consent by him-/herself. According to German law, patients' explicit written statements (advance directive, living will) are mandatory.
View Article and Find Full Text PDFBackground And Challenge: Injuries, especially traumatic brain injury, or specific illnesses and their respective sequelae can result in the demise of the patients afflicted despite all efforts of modern intensive care medicine. If in principle organ donation is an option after a patient's death, intensive therapeutic measures are regularly required in order to maintain the homeostasis of the organs. These measures, however, cannot benefit the patient afflicted anymore-which in turn might lead to an ethical conflict between dignified palliative care for him/her and expanded intensive treatment to facilitate organ donation for others, especially if the patient has opted for the limitation of life-sustaining therapies in an advance directive.
View Article and Find Full Text PDFThe Ethics Section of the German Interdisciplinary Association of Critical Care and Emergency Medicine (DIVI) recently published a documentation for decisions to withhold or withdraw life-sustaining therapies. The wish to donate organs was not considered explicitly. Therefore the Ethics Section and the Organ Donation and Transplantation Section of the DIVI together with the Ethics Section of the German Society of Medical Intensive Care Medicine and Emergency Medicine worked out a supplementary footnote for the documentation form to address the individual case of a patient's wish to donate organs.
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