"Suffering" in Palliative Sedation: Conceptual Analysis and Implications for Decision Making in Clinical Practice.

Palliative sedation is an increasingly used and, simultaneously, challenging practice at the end of life. Many controversies associated with this therapy are rooted in implicit differences regarding the understanding of "suffering" as a prerequisite for palliative sedation. The aim of this study is to inform the current debates by a conceptual analysis of two different philosophical accounts of suffering-1) the subjective and holistic concept and 2) the objective and gradual concept-and by a clinical-ethical analysis of the implications of each account for decisions about palliative sedation. We will show that although the subjective and holistic account of suffering fits well with the holistic approach of palliative care, there are considerable challenges to justify limits to requests for palliative sedation. By contrast, the objective and gradual account fits well with the need for an objective basis for clinical decisions in the context of palliative sedation but runs the risk of falling short when considering the individual and subjective experience of suffering at the end of life. We will conclude with a plea for the necessity of further combined conceptual and empirical research to develop a sound and feasible understanding of suffering, which can contribute to consistent decision making about palliative sedation.

[Austrian guideline for palliative sedation therapy (long version) : Results of a Delphi process of the Austrian Palliative Society (OPG)]. / Leitlinie zur Palliativen Sedierungstherapie (Langversion) : Ergebnisse eines Delphiprozesses der Österreichischen Palliativgesellschaft (OPG).

BACKGROUND: Palliative sedation therapy (PST) is an important and ethically accepted therapy in the care of selected palliative care patients with otherwise unbearable suffering from refractory distress. PST is increasingly used in end-of-life care. Austria does not have a standardized ethical guideline for this exceptional practice near end of life, but there is evidence that practice varies throughout the country. OBJECTIVE: The Austrian Palliative Society (OPG) nominated a multidisciplinary working group of 16 palliative care experts and ethicists who established the national guideline on the basis of recent review work with the aim to adhere to the Europeans Association of Palliative Care's (EAPC) framework on palliative sedation therapy respecting Austrians legal, structural and cultural background. METHODS: Consensus was achieved by a four-step sequential Delphi process. The Delphi-process was strictly orientated to the recently published EUROIMPACT-sedation-study-checklist and to the AGREE-2-tool. Additionally national stakeholders participated in the reflection of the results. RESULTS: As a result of a rigorous consensus process the long version of the Austrian National Palliative Sedation Guideline contains 112 statements within eleven domains and is supplemented by a philosophers excursus on suffering. CONCLUSIONS: By establishing a national guideline for palliative sedation therapy using the Delphi technique for consensus and stakeholder involvement the Austrian Palliative Society aims to ensure nationwide good practice of palliative sedation therapy. Screening for the practicability and efficacy of this guideline will be a future task.

["Good dying"--definition and current state of research]. / Was ist "gutes Sterben"? Begriffsklärung und Stand der Forschung.

The advances of modern medicine did not only result in prolongation of life expectancy, but also led to a shift from dying at home to dying in public institutions. In western countries most people die at advanced age in medical facilities. Hence, the question regarding the conditions, which should be provided by society and especially medicine, to allow terminally ill people to experience "good dying" is substantial. For this purpose, an examination of patients', family members' and health care providers' understanding of the term " good dying" is required. The present paper aims at shedding light on the term "good dying" and to summarize the current state of research. Therefore, the attributes of "good dying" will be described from the perspectives of patients, family members and health care providers, which are discussed and examined in current medical-sociological research. These attributes can be illustrated on three dimensions: Quality of life at the end of life (e. g. pain relief, mental well-being), quality of dying (e. g. avoiding prolonged dying, autonomy, presence of relatives) and quality of health care at the end of life (e. g. patient-oriented health care, positive communication between health care providers and patients, availability of guidelines). Although the attributes of "good dying" are described in detail in the existing literature, further studies have to clarify the relevance and impact of these attributes as predictors of "good dying".