The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We (...) analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted. (shrink)

Das Sterben wird längst nicht mehr verdrängt und verschwiegen, es gehört vielmehr zu den ausgiebig erörterten Themen unserer Zeit. Viele Debatten ranken sich um Sterbehilfe und um die Frage, was einen guten Tod ausmacht. Dabei scheinen wir uns bemerkenswert einig zu sein, dass gut stirbt, wer bis zuletzt er oder sie selbst bleibt. Wir wünschen uns, so die These dieses Buches, unseren 'eigenen Tod': ein Lebensende, wie es uns entspricht, ein authentisches Sterben. Dieses Ideal leitet in unterschiedlicher Weise die Palliativversorgung (...) und die Sterbehilfebewegung an. Doch Nina Streeck zeigt, dass sich das, was so erstrebenswert klingt, als anspruchsvoll entpuppt. Die Idee des 'eigenen Todes' droht sich in ihr Gegenteil zu verkehren: in einen Zwang zum authentischen Sterben."--Page 4 of cover. (shrink)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other (...) means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (shrink)

ZusammenfassungDer Artikel wirft einen kritischen Blick auf die gegenwärtige Theorie und Praxis palliativer Versorgung, auf ihren Umgang mit dem Sterben und mit Sterbenden und auf die zugrundeliegende Leitvorstellung von einem guten Sterben. Dabei wird Foucaults Begriff der Biomacht als Beschreibungs- und Deutungskategorie zu Rate gezogen. Weil mit Palliative Care das Anliegen verfolgt wird, ein gutes Sterben zu ermöglichen, sind vielfältige Kriterienkataloge und Messinstrumente entstanden, um die Behandlungen nach wissenschaftlichen Maßstäben zu planen und ihren Erfolg zu bestimmen. Im Lichte des Begriffs (...) der Biomacht zeigen sich potenziell problematische Aspekte dieser Entwicklung, die im bioethischen Diskurs üblicherweise verborgen bleiben. Indem die Lebensqualität von Sterbenden verbessert und zu diesem Zweck nicht allein körperliche Beschwerden, sondern auch psychisches, soziales und spirituelles Leiden gelindert werden soll, verschreibt sich die Palliative Care-Bewegung in einer Weise der Steigerung des Lebens, die den Einzelnen überfordern kann und seinen eigentlichen Bedürfnissen womöglich nicht gerecht wird. (shrink)