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Background: Assessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied., Aim: To explore the perspectives of parents on the assessment of QoL of their children., Methods: We conducted a qualitative study, forming three focus groups with 22 parents of children with PIMD to explore their views on what is necessary to assess QoL of their children and subsequently, who is best suited to assess QoL., Results: Parents describe a long-term relationship of the assessor with family (child and parents), with trust as an important aspect, as a requirement to assess QoL. Parents consider family members, preferably the parents themselves as the best assessors of QoL, followed by siblings. Professional caregivers, mostly mentioned by name, are considered the next alternative. Most parents thought that physicians do not know the child well enough to assess their QoL., Conclusions: In conclusion, the parents of children with PIMD in our study consider trust and a long-term relationship essential for assessing QoL., Competing Interests: Disclosure statement The authors declare that they have no conflicts of interests., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Palliative needs in older patients are often not timely identified. The Surprise Question (SQ) 'would I be surprised if this patient died in the next year?' is a well-researched tool that could aid in this effort. Most studies thus far involved physicians or specialist nurses, however the predictive value of the SQ when used by general nurses caring for hospitalized older patients is unknown., Objectives: To assess the predictive value of the SQ when used by general nurses and student nurses, in determining one year mortality in acutely hospitalized older patients., Design: Observational cohort study with an one year follow-up., Setting: One academic and one regional hospital in the Netherlands., Participants: Patients ≥70 years acutely hospitalized for at least 48 hours., Methods: Registered nurses and student nurses answered the SQ with 'No' (a positive SQ), 'Yes' or 'Don't know'. Data on student nurses was analysed separately. The sensitivity, specificity, negative- and positive predictive values were calculated. Furthermore, logistic regression was performed to determine the odds of death., Results: 66 registered nurses answered the SQ for 252 patients of whom 77 (30.6%) died in the year after inclusion. Respectively, 44%, 14% and 22% died within the 'No', 'Yes' and 'Don't know' group. 85% of patients who died during admission or in the first three months post-discharge were identified. The sensitivity and specificity were 76.7% and 56.6%. The positive and negative predictive values were 43.7% and 84.6 %. Compared to persons in whom the SQ was answered with yes, a no answer was associated with an 4.7 times increased odds of dying in the next 12 months (odds ratio 4.71, 95% CI 2.43-9.12, p<0.001). Additionally, 20 student nurses answered the SQ about 73 patients; sensitivity and specificity were 46.7% and 72.1%, with a positive and negative predictive value of 53.8% and 66.0% respectively., Conclusion: The usability of the Surprise Question in predicting 12-month mortality in older acutely admitted patients is limited, due to the high false positive rate. The SQ when used by non-specialized nurses identifies vulnerable patients with an increased mortality risk and can be used as a first step in assessing a patients' palliative needs, but has limited use as a single criterion for referral to specialist palliative care., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown., Aims: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands., Methods: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years., Results: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS., Conclusions: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Background: End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions., Aims: The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD., Methods: In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years., Results: A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept., Conclusion: The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Background and Aims: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions., Methods and Procedures: We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made., Outcomes and Results: We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive., Conclusions and Implications: Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Background: Loss of personal dignity in patients with a serious and progressive disease is associated with psychological suffering and loss of the will to live. Preservation of a sense of dignity in the seriously ill should therefore be a primary concern throughout the illness trajectory from diagnosis onward. However, there is currently limited insight into the dynamics of patients' sense of dignity during the progression of illness., Aim: This longitudinal qualitative study investigates patients' experiences with dignity over time in a diverse patient population (cancer, early-stage dementia and severe chronic illnesses)., Method: Nineteen patients were interviewed annually (max. 4 years), resulting in a data base of 56 interviews in total. Data were analyzed making use of thematic analysis., Results: Three different trajectories over time could be distinguished: (a) a Dynamic Equilibrium in which the individual's sense of dignity was temporarily diminished followed by a return to previous levels; (b) a Downward Trend in which the sense of dignity was diminished with progression of the disease without a return to previous levels; and (c) Stability in which the sense of dignity remained unaltered despite changes in circumstances., Conclusion: While there is a small group of patients for whom dignity remains unaffected by their disease experiences, most patients go through difficult times during which they struggle to maintain or regain their sense of dignity in the face of progressive loss. This longitudinal study offers insight into the dynamics behind this and enhances our understanding of why some patients manage to maintain their sense of dignity while others suffer from a diminished sense of dignity., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Background: While knowledge on factors affecting personal dignity of patients nearing death is quite substantial, far less is known about how patients living with a serious disease understand dignity., Objective: To develop a conceptual model of dignity that illuminates the process by which serious illness can undermine patients' dignity, and that is applicable to a wide patient population., Design: Qualitative interview study., Participants: 34 patients with either cancer, early stage dementia, or a severe chronic illness were selected from an extensive cohort study into advance directives., Method: In-depth interviews were carried out exploring the experiences of seriously ill patients with regard to their personal dignity. The interview transcripts were analyzed using thematic analysis and a conceptual model was constructed based on the resulting themes., Results: We developed a two-step dignity model of illness. According to this model, illness related conditions do not affect patients' dignity directly but indirectly by affecting the way patients perceive themselves. We identified three components shaping self-perception: (a) the individual self: the subjective experiences and internally held qualities of the patient; (b) the relational self: the self within reciprocal interaction with others; and, (c) the societal self: the self as a social object in the eyes of others., Conclusions: The merits of the model are two-folded. First, it offers an organizing framework for further research into patients' dignity. Secondly, the model can serve to facilitate care for seriously ill patients in practice by providing insight into illness and dignity at the level of the individual patient where intervention can be effectively targeted., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: Moral distress is associated with job dissatisfaction, turnover and early retirement. Because of these negative consequences moral distress should be reduced. Little research has been done on what job factors contribute to whether or not a situation causes moral distress., Objective: To identify individual and job characteristics associated with moral distress in nursing staff., Design: This is a cross sectional correlational study. Nursing staff members completed two survey questionnaires with a time-interval of 3 months. In the first survey questions were asked about job characteristics and job satisfaction. Three months afterwards the respondents answered questions on moral distress., Participants: 365 nursing staff members employed in nursing homes, homes for the elderly, home care and acute care hospitals completed both questionnaires., Results: High moral distress levels were related to lower job satisfaction. Moral distress is higher when nurses perceive less time available to give care to patients. If satisfaction with the consultation possibilities within the team is low and when an instrumental leadership style exists, nursing staff members are also more likely to experience moral distress. Nursing staff members working 30-40h per week experience less moral distress than colleagues working fewer hours per week. Multivariate analyses showed no relations with other individual characteristics measured., Conclusion: Job characteristics that contribute to moral distress should be an issue for managers because it is related to job satisfaction. Interventions to reduce moral distress should target at organisational issues. The way a team is supported can raise or decrease moral distress levels., (Copyright © 2012 Elsevier Ltd. All rights reserved.)