Treatment delay within the patient journey of people with Korsakoff's syndrome: A retrospective qualitative multiple-case study in the Netherlands.

Treatment delay is the best explanation for the development of Korsakoff's syndrome. This study aimed to improve the patient pathway to reduce treatment delay and/or increase proper care on time for people with Korsakoff's syndrome by generating knowledge about the patient journey from the first moment that professional care was deemed necessary until the time of admission into a specialised residential facility for long-term care and treatment. This retrospective exploratory multiple-case study used an individual semi-structured interview approach in 14 cases, with a total of 56 respondents. Process mapping was used to understand the chronological patient journey and the multiple-case description was analysed by using the same question as used by the individual case studies: 'What risk factors do the respondents discuss that can explain treatment delay?'. The exploration of the data revealed three reoccurring cross-case risk factors to explain treatment delay or delay in receiving proper care on time. Our respondents discussed: the lack of knowledge of KS, the fragmentation of care/waiting lists and the lack of specialistic home care. We recommend the development of knowledge programmes about Korsakoff's syndrome for family carers, GP's, healthcare professionals in general hospitals and home care workers, which could play an essential role in reducing treatment delays for patients with KS. There is also a need to find ways to organise coordinated care for patients with KS. Further research into the role of Korsakoff case managers is recommended.

Healthcare professionals under pressure in involuntary admission processes.

The main objective of this paper is to describe how quality of care may be improved during an involuntary admission process of patients suffering from Korsakoff's syndrome. It presents an empirically grounded analysis with different perspectives on 'doing good' during this process. Family carers', healthcare professionals' and legal professionals' ways of understanding and ordering this problematic situation appear very different. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life below the minimum acceptable. All this possibly lead to immoral dehumanizing situations. Firstly, the background of our empirical study is sketched. Secondly, the different perspectives on 'doing good' are summarized and compared. Thirdly, the tensions arising from the different conceptualizations of autonomy and different types of responsibilities of the actors are clarified. A common 'doing good' during involuntary admission necessitates removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. With this in mind, we propose a renewed time/action table for involuntary admission, which tends to address all patients' needs at the right time. The solution presented might help healthcare professionals, who are squeezed in between patients, family carers, legal professionals and overall rules, to create practices in which patients suffering from Korsakoff's syndrome can maintain their dignity and receive the care they need. Earlier interventions, timely and adequate diagnosis, and diminishment of tensions between the different actors by fine-tuning their paradigmatic frameworks are suggested to be part of a solution.

Ethical considerations on the value of patient knowledge in long-term care: a qualitative study of patients suffering from Korsakoff 's syndrome.

AIM: This study explores experiences of patients suffering from Korsakoff's syndrome. It contributes to improved reflection on the value of patient knowledge. BACKGROUND: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients' individual needs necessary to provide good care. The information given by patients suffering from Korsakoff's syndrome might be mistaken, invented and even not true. The value of these patients' experiences and knowledge had not been researched to date. METHOD: Data from six in-depth interviews were analysed concurrently through the constant comparative method. ETHICAL CONSIDERATIONS: The principles of voluntariness, confidentiality and anonymity were respected during the research process. FINDINGS: Four important themes within patients' knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective. CONCLUSION: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients' unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the - unintended - effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff's syndrome.

Healthcare professionals' dilemmas: judging patient's decision making competence in day-to-day care of patients suffering from Korsakoff's syndrome.

Patient's decision making competence (PDMC) is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff's syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals' duty to take care of their patient's best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas.

How to increase quality of care during coercive admission? A review of literature.

BACKGROUND: Involuntary admission is still raising in numbers and as a procedure a widely discussed subject from ethical point of view. A common dilemma is the tension between individual freedom and the need to protect the patient. Patients who are coerced during the admission process often report negative feelings or trauma. Finding out quality issues remains a challenge for providing good care during coercive admission. AIM: This study aims to explore themes from patients' and professionals' perspectives within scientific literature on involuntary admission. METHODS: A literature review of English articles using Academic Search Elite, Cinahl, Medline, PubMed and Social Science Journals for the period 1995-2012 was conducted. Additional studies were identified using the National Centre for Biotechnology Information (NCBI). Search terms included involuntary, hospitalisation, ethical, admission, nursing home, coercion and factor. Finally, twenty-two articles were included and analysed out of 1216. RESULTS AND CONCLUSION: Articles were divided between those describing themes from patients' perspective and articles describing themes from professionals' perspective. Findings show that most experiences of patients can be traced back to one core experience: not being listened to or listened to. When patients experience being listened to genuinely, they feel more respected as a human being. The challenge for the professional carer seems to explicitly pay attention and stay in touch with the patients' emotional struggles while making the necessarily decision to admit the patient to prevent harm. Quality of care during coercive admission improves when professionals are able to do justice to both inside and outside perspectives simultaneously.