The patient's experience of temporary paralysis from spinal anaesthesia, a part of total knee replacement.

AIMS AND OBJECTIVES: The aim of this study was to describe the meaning of being temporary paralysed from spinal anaesthesia when undergoing total knee replacement. BACKGROUND: Total knee arthroplasty is a common procedure, and regional anaesthesia is used as a method for anaesthetising the patient. The experience is highly individual in substance and duration, and it can extend far beyond care settings as intraoperative care and the postanaesthesia care unit that have been investigated so far. DESIGN: A qualitative phenomenological hermeneutic design was chosen to gain a deeper understanding of the experience of spinal anaesthesia, as a part of having a total knee replacement. METHODS: Twelve patients were interviewed in March 2014 after undergoing an elective total knee arthroplasty under spinal anaesthesia. The interviews were analysed with a Ricoeur-inspired interpretation method. RESULTS: Three themes were derived from the interviews: 'anaesthesia--an unavoidable necessity', 'an unrecognisable and incomprehensible body' and 'the body returns--joy and agony'. CONCLUSION: The results reveal that trust in the health care personnel and knowledge of the course of events play a key role in the experience. The trust can be breached by unforeseen events, or if the patient's experiences were not taken into account. The ability of the health care personnel to be in contact, share relevant knowledge with- and compensate for the patient is crucial in the prevention of negative experiences. RELEVANCE TO CLINICAL PRACTICE: The results of this study contribute to insights and deeper knowledge that can enhance staff's ability to provide care for patients undergoing total knee arthroplasty in spinal anaesthesia. The results provide perspectives that argue for care in accordance to individual needs.

Withdrawal of invasive home mechanical ventilation in patients with advanced amyotrophic lateral sclerosis: ten years of Danish experience.

BACKGROUND: Due to the growing use of home mechanical ventilation in amyotrophic lateral sclerosis (ALS), physicians are increasingly confronted with patients seeking discontinuation of therapy. Yet there are few systematic investigations of the withdrawal of invasive home mechanical ventilation (IHMV). This article aims to describe the medical and patient-related aspects of terminating IHMV in patients with advanced stage ALS. METHODS: A retrospective, descriptive study was made of all ALS patients cared for at our center from 2002 to 2009 who decided to withdraw their consent for IHMV. RESULTS: All 12 ALS patients (4 females) received continuous IHMV. They had a median age of 61 years (range, 39-69 years). In all cases advance directives for end of life care, particularly concerning withdrawal of treatment, were discussed before the initiation of IHMV. The median time from initiation of IHMV to the decision to terminate treatment was 22 months (range, 1-35 months). The reasons for requests were for all patients a general loss of "meaning in life." Deep sedation was achieved with high dose morphine and diazepam before disconnecting the ventilator. CONCLUSION: Patients' requests for the withdrawal of IHMV in advanced stage ALS was related to a perceived "loss of meaning in life." Termination of treatment was performed under deep sedation as a medically, legally, and ethically justified procedure.

Life with home mechanical ventilation for young men with Duchenne muscular dystrophy.

AIM: This paper is a report of a study from a patient perspective of the life experiences with home mechanical ventilation among young men with Duchenne muscular dystrophy. BACKGROUND: People with chronic respiratory failure due to neuromuscular diseases have been offered life-long ventilator support at home for more than a decade. People having this treatment are positive about it and agree on having made the right choice about receiving it. METHOD: Nineteen people with Duchenne muscular dystrophy and invasive home mechanical ventilation were interviewed in 2007. The interviews were tape-recorded, transcribed verbatim and analysed according to a method inspired by Ricoeur's theory of interpretation, which consists of: a naive reading, a structural analysis, and a critical analysis and discussion. FINDINGS: The participants described how the ventilators had saved their lives and were the best thing that had happened to them, but they had had difficulty making the decision of when to start invasive ventilation. Invasive ventilation was preferred to non-invasive ventilation by those who had experienced both. The participants wanted individualized care tailored to their needs in the home setting. Problems were described as being due to both human and technical factors, and sometimes resulted in inadequate ventilation. CONCLUSION: Society needs to discuss if it is a basic human right to be able to breathe, and whether people with Duchenne muscular dystrophy therefore have the right to invasive home mechanical ventilation. Healthcare professionals need to guide ventilator-users in decision-making about when to receive invasive home mechanical ventilation.

Distanciation in Ricoeur's theory of interpretation: narrations in a study of life experiences of living with chronic illness and home mechanical ventilation.

Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the text. Ricoeur's 'Hermeneutical function of distanciation' will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular kind of mediation in the interpretation. That narration represents an interpreted understanding of the whole, which facilitates an appropriate and evocative presentation of the interpreted data. This way of objectifying the text through narration can contribute yet another perspective to Ricoeur's rich and varied theory of interpretation.