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.
Research aimsThe motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.Study population62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).Study design and methodsQualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.ResultsIn addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.InterpretationWTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients’ WTD, and the underlying motivations and protective factors.
Palliative care (PC) 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 (PAS), 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 provider's' 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.
Background The spiritual aspect of care is an often neglected resource in pain therapies. The aim of this study is to identify commonalities and differences in chronic pain patients’ (CPP) and health care professionals’ (HCP) perceptions on the integration of spiritual care into multimodal pain therapy. Methods We conducted a qualitative exploratory study with 42 CPPs and 34 HCPs who were interviewed in 12 separate groups in five study centres specialising in chronic pain within German-speaking Switzerland. The interviews were transcribed and subjected to a qualitative content analysis. Findings were generated by juxtaposing and analysing the statements of (a) HCP about HCP, (b) HCP about CPP, (c) CPP about HCP, and (d) CPP about CPP. Results Views on spiritual concerns and needs in chronic pain care can be described in three distinct dimensions: function (evaluating the need / request to discuss spiritual issues), structure (evaluating when / how to discuss spiritual issues) and context (evaluating why / under which circumstances to discuss spiritual issues). CPPs stress the importance of HCPs recognizing their overall human integrity, including the spiritual dimension, and would like to grant spiritual concerns greater significance in their therapy. HCPs express difficulties in addressing and discussing spiritual concerns and needs with chronic pain patients. Both parties want clarification of the context in which the spiritual dimension could be integrated into treatment. They see a need for greater awareness and training of HCPs in how the spiritual dimension in therapeutic interactions might be addressed. Conclusions Although there are similarities in the perspectives of HCPs and CPPs regarding spiritual concerns and needs in chronic pain care, there are relevant differences between the two groups. This might contribute to the neglect of the spiritual dimension in the treatment of chronic pain. Trial registration This study was part of a larger research project, registered in a primary (clinicaltrial.gov: NCT03679871) and local (kofam.ch: SNCTP000003086) clinical trial registry.
Die Frage nach dem guten Tod wird heute angeregt debattiert. Dabei ist jedoch nicht immer klar, wonach gefragt ist: Nach dem guten Tod oder dem guten Sterben? Der Beitrag entfaltet die These, dass für den gegenwärtigen Umgang mit dem Lebensende charakteristisch ist, sich für das Sterben zu interessieren und dieses zum Gegenstand von Optimierungsbestrebungen zu machen. Häufig orientiert sich die Optimierung des Sterbens an den einflussreichen Leitbildern der Palliative Care und der Sterbehilfebewegung. An ihnen lässt sich ablesen, wie sich die Sterbeoptimierung heute konkret verwirklicht. Wer Antworten auf die Frage sucht, was ein guter Tod sei, wird leicht fündig, so angeregt wird das Thema heute öffentlich verhandelt, und das nicht allein in Kontroversen über Sterbehilfe. Eine umfangreiche Ratgeber-und Betroffenenliteratur steht zur Verfügung, Talkshows widmen sich Sterben und Tod, in unzähligen Weblogs schildern unheilbar Kranke bis unmittelbar vor ihrem Tod ihre Erfahrungen, Dokumentarfilmer begleiten Sterbende in ihrer letzten Lebensphase. Von einer "Geschwätzigkeit des Todes" (Nassehi 2004) zu sprechen, drängt sich regelrecht auf. Die stets-manchmal klar formuliert, manchmal unausgesprochen-mitschwingende Frage, wie zu sterben gut sei, könnte dabei durchaus geeignet sein, Irritationen hervorzurufen. Denn kann das Adjektiv gut jemals Sterben und Tod spezifizieren, wo doch der Tod als Feind des Lebens figuriert? Gaukelt die Rede vom guten Sterben nicht eine Harmonie von Unversöhnlichem vor, nämlich von Leben und Tod? Verbinden sich mit dem Lebensende nicht unauflöslich Kummer, Leiden und Trauer, die Sterben und Tod der Attribuierung als Gutes notwendig entziehen? Was soll es bedeuten, vom Sterben oder vom Tod auszusagen, sie seien gut? Doch liegt die Frage nach einem guten Tod auch nahe. Kommt der Tod schon, wenn auch nicht willkommen, so doch eines Tages unweigerlich, lässt sich wenigstens wünschen, das Lebensende möge, zumindest in einem bescheidenen Sinne, gut verlaufen. Tatsächlich ist die Frage nach dem guten Tod nicht neu. Ebenso wie sich Menschen seit jeher dafür interessiert haben, wie sie gut leben, stellten sie stets auch die Frage, wie sie gut sterben können. Und jederzeit kursierten Antworten, die mitunter zu gemeinschaftlich geteilten Idealen kondensierten; so auch heute. Dennoch ist nicht auf den ersten Blick klar, wonach wir eigentlich fragen, wenn wir wissen möchten, was ein gutes Lebensende ausmacht. Zur Klärung dessen trägt bei, zunächst die Frage
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