Jan Lavrijsen

Background
The vegetative state, also known as the unresponsive wakefulness syndrome, is one of the worst possible outcomes of acquired brain injury and confronts rehabilitation specialists with various challenges. Emergence to (minimal) consciousness is classically considered unlikely beyond 3–6 months after non-traumatic or 12 months after traumatic etiologies. A growing body of evidence suggests that these timeframes are too narrow, but evidence regarding chances of recovery is still… Show more

Background
The vegetative state, also known as the unresponsive wakefulness syndrome, is one of the worst possible outcomes of acquired brain injury and confronts rehabilitation specialists with various challenges. Emergence to (minimal) consciousness is classically considered unlikely beyond 3–6 months after non-traumatic or 12 months after traumatic etiologies. A growing body of evidence suggests that these timeframes are too narrow, but evidence regarding chances of recovery is still limited.

Objective
To identify the moment of recovery of consciousness in documented cases of late emergence from a vegetative state.

Methods
Four cases of apparent late recovery of consciousness, identified within a prospective cohort study, were studied in-depth by analyzing medical, paramedical and nursing files and interviewing the patients’ families about their account of the process of recovery.

Results
All patients were found to have shown signs of consciousness well within the expected time frame (5 weeks–2 months post-ictus). These behaviors, however, went unnoticed or were misinterpreted, leading to a diagnostic delay of several months to over 5 years. Absence of appropriate diagnostics, the use of erroneous terminology, sedative medication but also patient-related factors such as hydrocephalus, language barriers and performance fluctuations are hypothesized to have contributed to the delay.

Conclusions
Delayed recognition of signs of consciousness in patients in a vegetative state may not only lead to suboptimal clinical care, but also to distorted prognostic figures. Discriminating late recovery from the delayed discovery of consciousness, therefore, is vital to both clinical practice and science. Show less

Aim
Establishing the prevalence of neuropsychiatric symptoms (NPS), quality of life and psychotropic drug use in people aged ≤65 years with acquired brain injury in nursing homes.

Design
Cross‐sectional, observational study among patients aged 18–≤65 years with acquired brain injury admitted to special care units in Dutch nursing homes.

Methods
According to the Committee on Research Involving Human Subjects in January 2017 this study did not require ethics approval… Show more

Aim
Establishing the prevalence of neuropsychiatric symptoms (NPS), quality of life and psychotropic drug use in people aged ≤65 years with acquired brain injury in nursing homes.

Design
Cross‐sectional, observational study among patients aged 18–≤65 years with acquired brain injury admitted to special care units in Dutch nursing homes.

Methods
According to the Committee on Research Involving Human Subjects in January 2017 this study did not require ethics approval. Nursing homes will be recruited through the national acquired brain injury expertise network for patients with severe brain injury, the regional brain injury teams and by searching the internet. Patient characteristics will be collected through digital questionnaires. Neuropsychiatric symptoms will be assessed with the NeuroPsychiatric Inventory‐Nursing Home version, the Cohen–Mansfield Agitation Inventory and the St. Andrews Sexual Behaviour Assessment; cognition with the Mini‐Mental State Examination, quality of life with the Quality of Life after Brain Injury Overall Scale and activities of daily living with the Disability Rating Scale. Medication will be retrieved from the electronic prescription system. Data collection commenced in 2017 and will be followed by data analysis in 2019. Reporting will be completed in 2020.

Discussion
Little is known about NPS among patients with acquired brain injury in nursing homes. In patients up to the age of 65 years, only six studies were found on prevalence rates of NPS.

Impact
Patients with severe acquired brain injury experience lifelong consequences, that have a high impact on them and their environment. Although there is increasing attention for the survival of this vulnerable group of patients, it is also important to enlarge awareness on long‐term consequences, specifically the NPS, quality of life and psychotropic drug use in acquired brain injury. Insight into the magnitude of these issues is necessary to achieve appropriate care for these patients.
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Na een lange historie en een recent rapport over passende zorg, ziet het zorgtraject voor mensen met een langdurige bewustzijnsstoornis er vanaf 2019 anders uit. Zo vervalt de leeftijdsgrens van 25 jaar voor Vroege Intensieve Neurorevalidatie en is vanuit verpleeghuizen een zorgprogramma ontwikkeld voor de Langdurige Intensieve Neurorevalidatie die daarop volgt. Dat alles is ingebed in een expertisenetwerk dat praktijk, onderzoek en onderwijs met elkaar verbindt. Vanuit hun betrokkenheid bij… Show more

Na een lange historie en een recent rapport over passende zorg, ziet het zorgtraject voor mensen met een langdurige bewustzijnsstoornis er vanaf 2019 anders uit. Zo vervalt de leeftijdsgrens van 25 jaar voor Vroege Intensieve Neurorevalidatie en is vanuit verpleeghuizen een zorgprogramma ontwikkeld voor de Langdurige Intensieve Neurorevalidatie die daarop volgt. Dat alles is ingebed in een expertisenetwerk dat praktijk, onderzoek en onderwijs met elkaar verbindt. Vanuit hun betrokkenheid bij deze ontwikkelingen presenteren de auteurs de weg naar een sluitende zorgketen, met tips voor de praktijk. De laatste actualiteiten beschrijven zij in Actueel Show less

Visual pursuit (VP) and visual fixation (VF) have been recognized as the first signs of emerging consciousness and, there-fore, are considered indicative of the minimally conscious state (MCS). However, debate exists about their status as they are considered either conscious reactions or reflexes. The aim of this study is to review the evidence of the definition, operation-alization, and assessment of VP and VF in unconscious patients. PubMed and EMBASE were searched for relevant papers between… Show more

Visual pursuit (VP) and visual fixation (VF) have been recognized as the first signs of emerging consciousness and, there-fore, are considered indicative of the minimally conscious state (MCS). However, debate exists about their status as they are considered either conscious reactions or reflexes. The aim of this study is to review the evidence of the definition, operation-alization, and assessment of VP and VF in unconscious patients. PubMed and EMBASE were searched for relevant papers between May 26, 1994 and October 1, 2016. In addition, an internet search was done to identify other relevant papers, reports and manuals of assessment methods. Papers were included if the definition, operationalization, or assessment method of VP and VF was discussed in patients with disorders of consciousness. We identified 2364 articles, of which 38 were included. No uniform definitions of VP and VF were found. VP and VF were operationalized differently, depending on which scale was used. The Coma Recovery Scale-revised and the Sensory Tool to Assess Responsiveness were the only diagnostic scales found; the other scales were developed to monitor DOC patients. The use of a mirror was the most sensitive method for detecting VP and VF. The literature about the importance VP and VF in relation with consciousness is controversial. This integrative review shows a lack of consensus regarding the definition, operationalization, and assessment of VP and VF. International consensus development about the definition, operationalization, and assessment of VP and VF is recommended. Show less

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional… Show more

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term care of patients in VS/UWS.

Methods

A qualitative study of transcripts on 2 Moral Deliberations (MD’s) in 2 cases of patients in VS/UWS in long-term care facilities.

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Specialisten ouderengeneeskunde krijgen met steeds meer categorieën patiënten te maken. Koopmans e.a. beschrijven de actuele stand van zaken in de zorg voor vier van deze categorieën: jonge patiënten met niet-aangeboren hersenletsel (NAH), jonge patiënten met dementie, patiënten met Parkinson en gerontopsychiatrie

Samenvatting
Langdurige bewustzijnsstoornissen, zoals de vegetatieve toestand of het niet-responsief waak- syndroom en de minimaal bewuste toestand, behoren tot de slechtst mogelijke uitkomsten van niet- aangeboren hersenletsel. Dit artikel geeft een overzicht van de diagnostiek, prognose en behandelings- mogelijkheden voor patiënten met deze complexe klinische beelden met een aanbeveling voor meer samenwerking tussen eerste- en tweedelijnsspecialisten.
(Tijdschr Neurol Neurochir… Show more

Samenvatting
Langdurige bewustzijnsstoornissen, zoals de vegetatieve toestand of het niet-responsief waak- syndroom en de minimaal bewuste toestand, behoren tot de slechtst mogelijke uitkomsten van niet- aangeboren hersenletsel. Dit artikel geeft een overzicht van de diagnostiek, prognose en behandelings- mogelijkheden voor patiënten met deze complexe klinische beelden met een aanbeveling voor meer samenwerking tussen eerste- en tweedelijnsspecialisten.
(Tijdschr Neurol Neurochir 2016;117(3):97-102)

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Abstract

Objective: To explore the long-term outcome of young patients with disorders of consciousness who had received intensive neurorehabilitation.

Methods: A cross-sectional cohort study, in which the survival, level of consciousness, functional independence, mobility, communication and living situation were determined by means of a structured questionnaire. The cohort consisted of 44 children and young adults, originally either in a prolonged Vegetative State/Unresponsive… Show more

Abstract

Objective: To explore the long-term outcome of young patients with disorders of consciousness who had received intensive neurorehabilitation.

Methods: A cross-sectional cohort study, in which the survival, level of consciousness, functional independence, mobility, communication and living situation were determined by means of a structured questionnaire. The cohort consisted of 44 children and young adults, originally either in a prolonged Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS, n = 33) or a Minimally Conscious State (MCS, n = 11) who had received a specialized neurorehabilitation programme 10–12 years earlier.

Results: Response rate was 72% (34/44). Eleven patients were deceased, 10 of whom were in VS/UWS or MCS at discharge from the programme. Of the remaining 23 patients, 19 were conscious. Twelve lived independently, of whom six required some household support. One conscious patient lived permanently in a long-term care facility. All other patients lived either independently or with their parents. None of the VS/UWS or MCS patients showed any functional recovery.

Conclusion: Two main long-term outcome scenarios can be recognized. Two-thirds of the participating patients who were conscious at programme discharge were able to live independently, whereas almost two-thirds of the participating patients who were in VS/UWS or MCS at discharge subsequently died. Show less

Background

The aim of prescribing medication in palliative end-of-life care should be symptom control. Data are lacking regarding the prescription of medication at the end of life.

Aim

To investigate the prescription of medication in patients at the end of life in palliative care facilities.

Design, setting, and participants

An observational multicenter study in 7 inpatient palliative care facilities. Participants were adults with an estimated life expectancy… Show more

Background

The aim of prescribing medication in palliative end-of-life care should be symptom control. Data are lacking regarding the prescription of medication at the end of life.

Aim

To investigate the prescription of medication in patients at the end of life in palliative care facilities.

Design, setting, and participants

An observational multicenter study in 7 inpatient palliative care facilities. Participants were adults with an estimated life expectancy of less than 3 months. The study was conducted from February 1, 2012, to January 1, 2013.

Results

A total of 155 patients were enrolled. On average, patients were prescribed 6.1 drugs at the moment of admission and 4.6 drugs on the day of death. The prescription of analgesics, psycholeptics, and drugs for functional gastrointestinal disorders increased from admission until death. In general, these are drug classes prescribed for symptom control. All other drug classes decreased between admission and the day of death, including different drug classes for the treatment of comorbid disease, such as anticoagulants, beta-blocking agents, drugs used in diabetes, and lipid-modifying agents.

Conclusions and relevance

A reduction in the total amount of medication is seen between admission and death in the palliative care facilities. Although there is an increase in prescribed symptom-specific medication and a reduction in medication prescribed for comorbid disease, there are still patients dying with medication not used for symptom control. This increases pill burden and indicates that physicians need to develop guidelines and educational programs for decreasing medication for comorbidities at the end of life.
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The minimally conscious state is a disorder of consciousness distinct from coma and the vegetative state/unresponsive wakefulness syndrome, because patients show partial preservation of conscious awareness. Deep brain stimulation is seen as a potential treatment to improve consciousness. In patients in a minimally conscious state, the technique of deep brain stimulation is used to electrically stimulate the nuclei of the thalamus, the part of the brain that plays an important role in regulating… Show more

The minimally conscious state is a disorder of consciousness distinct from coma and the vegetative state/unresponsive wakefulness syndrome, because patients show partial preservation of conscious awareness. Deep brain stimulation is seen as a potential treatment to improve consciousness. In patients in a minimally conscious state, the technique of deep brain stimulation is used to electrically stimulate the nuclei of the thalamus, the part of the brain that plays an important role in regulating consciousness. Most early deep brain stimulation-studies have been performed on patiënts with severe brain damage and severe disorders of consciousness and are characterized by methodological challenges and disappointing results. Recent casuistic research has suggested a possible role for deep brain stimulation in improving consciousness in patiënts with a chronic minimally conscious state. However, caution is required as class I and II evidence is absent and the effects of stimulation have still to be assessed in further, larger studies. Show less

Vanuit onderzoek naar de langetermijnzorg voor patiënten in een vegetatieve toetstand/niet-responsief waaksyndroom worden in dit artikel enkele lessen beschreven met betrekking tot medisch handelen en besluitvorming op de grens van leven en dood. De kernpunten zijn: het belang van een adequate diagnose - met name in relatie tot patiënten in een laagbewuste toestand - een proactieve benadering door artsen en het werken met scenario’s, inclusief regelmatige evaluaties van behandeldoelen en… Show more

Vanuit onderzoek naar de langetermijnzorg voor patiënten in een vegetatieve toetstand/niet-responsief waaksyndroom worden in dit artikel enkele lessen beschreven met betrekking tot medisch handelen en besluitvorming op de grens van leven en dood. De kernpunten zijn: het belang van een adequate diagnose - met name in relatie tot patiënten in een laagbewuste toestand - een proactieve benadering door artsen en het werken met scenario’s, inclusief regelmatige evaluaties van behandeldoelen en intensieve begeleiding van families naar beslismomenten. Tot slot worden enkele aanbevelingen gedaan voor de praktijk, onderwijs en onderzoek. Show less

One of the worst outcomes of acquired brain injury is the vegetative state, recently renamed 'unresponsive wakefulness syndrome' (VS/UWS). A patient in VS/UWS shows reflexive behaviour such as spontaneous eye opening and breathing, but no signs of awareness of the self or the environment. We performed a systematic review of VS/UWS prevalence studies and assessed their reliability. Medline, Embase, the Cochrane Library, CINAHL and PsycINFO were searched in April 2013 for cross-sectional point or… Show more

One of the worst outcomes of acquired brain injury is the vegetative state, recently renamed 'unresponsive wakefulness syndrome' (VS/UWS). A patient in VS/UWS shows reflexive behaviour such as spontaneous eye opening and breathing, but no signs of awareness of the self or the environment. We performed a systematic review of VS/UWS prevalence studies and assessed their reliability. Medline, Embase, the Cochrane Library, CINAHL and PsycINFO were searched in April 2013 for cross-sectional point or period prevalence studies explicitly stating the prevalence of VS/UWS due to acute causes within the general population. We additionally checked bibliographies and consulted experts in the field to obtain 'grey data' like government reports. Relevant publications underwent quality assessment and data-extraction. We retrieved 1032 papers out of which 14 met the inclusion criteria. Prevalence figures varied from 0.2 to 6.1 VS/UWS patients per 100 000 members of the population. However, the publications' methodological quality differed substantially, in particular with regards to inclusion criteria and diagnosis verification. The reliability of VS/UWS prevalence figures is poor. Methodological flaws in available prevalence studies, the fact that 5/14 of the studies predate the identification of the minimally conscious state (MCS) as a distinct entity in 2002, and insufficient verification of included cases may lead to both overestimation and underestimation of the actual number of patients in VS/UWS. Show less

This paper aimed to review the literature regarding decision making about medication for comorbid disease at the end of life, defined as a life expectancy < 3 months, and to formulate preliminary recommendations based on the existing literature

In vakblad specialisme ouderengeneeskunde gepubliceerd verslag van presentaties en werkbezoek aan Torun, Polen van 11-14 september 2013. In kader internationaal congres 'There is a life in coma'. Inclusief werkbezoek aan een bijzonder verpleeghuis.

To establish the point prevalence and characteristics of patients with locked-in syndrome (LIS), particularly of the classic type, residing in Dutch nursing homes, a cross-sectional survey of Dutch nursing homes was conducted. The classic form of LIS was defined according to the criteria of the American Congress of Rehabilitation Medicine (1995). All Dutch long-term care organisations (n = 187) were asked if they had any patients with classic LIS as of December 5, 2011. The treating Elderly… Show more

To establish the point prevalence and characteristics of patients with locked-in syndrome (LIS), particularly of the classic type, residing in Dutch nursing homes, a cross-sectional survey of Dutch nursing homes was conducted. The classic form of LIS was defined according to the criteria of the American Congress of Rehabilitation Medicine (1995). All Dutch long-term care organisations (n = 187) were asked if they had any patients with classic LIS as of December 5, 2011. The treating Elderly Care Physicians were then contacted to provide patient characteristics. Of all organisations, 91.4 % responded, and 11 organisations reported a total of 12 patients. After analysing the questionnaires, it was determined that ten patients had LIS, and two patients were characterised with vegetative state. Only two patients met the criteria for classic LIS, while six patients showed partial LIS. One of these patients was admitted to the nursing home after December 5, 2011, and was therefore, excluded. LIS without accompanying pontine lesion was observed in the remaining two patients. For the first time, the prevalence of classic LIS has been established at 0.7/10,000 somatic nursing home beds in all Dutch long-term care organisations. Possible explanations for this low prevalence could be the Dutch provision of home care or the influence of end-of-life decisions, such as euthanasia and withholding or withdrawing all medical treatment, including artificial nutrition and hydration. These alternate outcomes should be explored in further studies.
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For the first time prevalence measurement of neuropathic pain in (Dutch) nursing homes

Uitleg waarom volgens de laatste stand van de wetenschap speciale waakzaamheid nodig is voor diagnosticeren van het niet-responsief waaksyndroom.

Bijdrage venster in de Canon Ouderengeneeskunde ter ere van het 40-jarig jubileum van de beroepsvereniging. Maakt duidelijk waarom ook jongeren behoren tot de doelgroep van specialisten ouderengeneeskunde, ondanks de nieuwe naam voor het specialisme.

Verslag van presentaties tijdens congres in Havana Cuba over bewustzijnsstoornissen en Nederlands onderzoek, inclusief ervaringen met ethische dilemma's in de langetermijnzorg.

Editorial

Introductie van nieuwe naam Niet-responsief Waaksyndroom (NWS) voor vegetatieve toestand in Nederland

Beschrijving beloop en onderscheid tussen twee verpleeghuispatienten zonder tekenen van bewustzijn (vegetatieve toestand) en met minimale tekenen van bewustzijn (Minimally Conscious State)

In name of the European Task Force on Disorders of Consciousness we introduce a new name for Vegetative State. Since after 35 years the medical community has been unsuccessful in changing the pejorative image associated with the words vegetative state, we think it would be better to change the term itself. We here offer physicians the possibility to refer to this condition as unresponsive wakefulness syndrome or UWS. As this neutral descriptive term indicates, it refers to patients showing a… Show more

In name of the European Task Force on Disorders of Consciousness we introduce a new name for Vegetative State. Since after 35 years the medical community has been unsuccessful in changing the pejorative image associated with the words vegetative state, we think it would be better to change the term itself. We here offer physicians the possibility to refer to this condition as unresponsive wakefulness syndrome or UWS. As this neutral descriptive term indicates, it refers to patients showing a number of clinical signs (hence syndrome) of unresponsiveness (that is, without response to commands) in the presence of wakefulness (that is, eye opening). Show less

Opiniestuk naar aanleiding van overlijden Italiaanse patiente in vegetatieve toestand na staken van kunstmatige toediening van voeding en vocht

Opiniestuk naar aanleiding van melding pyamadagen in verpleeghuizen tegelijk met de Miljonairsbeurs

Beschrijving van de dynamische veranderingen van het nog jonge specialisme aan de hand van de coupletten van dit beroemde lied van Bob Dylan

hoofdstuk in een boek over palliatieve zorg

naar aanleiding van de maatschappelijke discussie over 'versterven'

Ingezonden reactie justitie naar aanleiding van casus

Reactie op commentaar

Eerste casus over het staken van de medische behandeling, inclusief kunstmatige toediening van voeding en vocht, bij een patient in een langdurig vegetatieve toestand

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