This thesis aimed to find opportunities to improve proactivity and patient-centredness in palliative care, focussing on education and care outcomes. The 2009 national blueprint on medical education... Show moreThis thesis aimed to find opportunities to improve proactivity and patient-centredness in palliative care, focussing on education and care outcomes. The 2009 national blueprint on medical education and the Dutch medical curricula did not comprise all essential elements about end-of-life care. Factors associated with approaching death in patients with advanced cancer visiting the LUMC’s Emergency Department (ED) in the last three months of life were lung cancer, neurologic deterioration, dyspnoea, hypercalcemia and jaundice. Patients with haematological malignancies received more potentially inappropriate care than advanced cancer patients. They rarely had limitations on life-sustaining treatments, although they often died of disease progression or treatment toxicity. The surprise question (SQ) is a simple tool to identify patients with palliative care needs . Adding poor performance status to the SQ improved the predictive value for one-year mortality in advanced cancer patients visiting the LUMC’s ED. The Leiden Guide on Palliative Care (LGP) was developed by the Centre of Expertise in Palliative Care to assess symptom burden and information needs. Patients and family wanted information about current problems and about their worries. Patients, family and clinicians found the LGP helpful. Using their input, the LGP was improved for use by generalist palliative care clinicians. Show less
Yilmaz, D.; Egorova, A.D.; Schalij, M.J.; Erven, L. van 2022
Background and objective: Balance between benefit and burden of implantable cardioverter-defibrillator (ICD) therapy is more debatable in older patients, compared to younger patients. Of around... Show moreBackground and objective: Balance between benefit and burden of implantable cardioverter-defibrillator (ICD) therapy is more debatable in older patients, compared to younger patients. Of around 6000 yearly implanted ICDs in the Netherlands, 1:4 is received by patients >= 75 years. We aimed to evaluate the current clinical practice in the Netherlands for ICD implants and generator replacements, with a special focus on the older ICD patients. Research design and methods: Cardiologists from all Dutch ICD implanting centres (n = 28) were interviewed. Questions aimed to evaluate outpatient care, pre-operative patient assessment, end-of-life-care counselling, evaluation of social and cognitive wellbeing, clinical evaluation of all patients prior to ICD replacement, and the consideration of the option to downgrade or not replace a device. Results: Implanting cardiologists from all 28 implanting centres were approached for an interview. Response rate was 86%. Management appeared diverse. An age >= 80 years was consistently reported as incentive for more extensive patient evaluation. Patients were invited for counselling prior to device replacements in only the minority (46%) of hospitals. Downgrade or non-replacement was performed in rare cases. End-of-life care discussions were not standard procedure in 67% of the hospitals. Evaluation of social and cognitive wellbeing of patients was based solely on the general clinical impression of the physician in 83%, or not at all assessed in 8% of the centres. Discussion and implication: A structured framework for care and evaluation of cognitive and/or physical limitations is currently absent in most hospitals. At time of ICD (re-)evaluation, several factors may be considered before deciding on (continuation of) ICD therapy: patient preferences and comorbidity, the need for pacemaker therapy, primary vs. secondary prevention, procedural risks, and patient preferences. Show less
Klapwijk, M.S.; Dekker, N.L.; Caljouw, M.A.A.; Achterberg, W.P.; Steen, J.T. van der 2020
BackgroundThe Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent... Show moreBackgroundThe Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes.MethodsA mixed-methods approach was used, consisting of a survey followed by interviews. A link to a 9-item online survey with closed and open-ended questions was emailed to all physicians and nurse practitioners of 33 care organisations with nursing homes in three regions of the Netherlands (North, West and South). In addition, 10 respondents with particularly positive or negative experiences were selected for semi-structured interviews.ResultsThe survey was completed by 159 physicians and nurse practitioners. The respondents were very positive on the content and less positive on the use of the LCP, although they reported difficulties identifying the right time to start the LCP, especially in case of dementia. Also using the LCP was more complicated after the implementation of the electronic health record. The LCP was judged to be a marker of quality for the assessment of symptoms in the dying phase and communication with relatives.ConclusionAn instrument that prompts regular assessment of a dying person was perceived by those responsible for (medical) care to contribute to good care. As such, the LCP was valued, but there was a clear need to start it earlier than in the last days or hours of life, a need for a shorter version, and for integration of the LCP in the electronic health record. Regular assessments with an instrument that focusses on quality of care and good symptom control can improve palliative care for nursing home residents with and without dementia. Show less
Honinx, E.; Dop, N. van; Smets, T.; Deliens, L.; Noortgate, N. van den; Froggatt, K.; ... ; PACE 2019
Objective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and... Show moreObjective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. Method Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches. Result Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.Significance of results. Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps. Show less
Bruin, J. de; Verhoef, M.J.; Slaets, J.P.J.; Bodegom, D. van 2018
