Annales Franc¸aises d’Anesthe´sie et de Re´animation 33 (2014) 102–109

Anarlf meeting

Severe stroke: Which medicine for which results?§,§§ Quelle me´decine pour quels re´sultats en pathologie vasculaire ce´re´brale ? F. Woimant a,*,b, Y. Biteye b, P. Chaine a, S. Crozier c a b c

Service de neurologie, hoˆpital Lariboisie`re, AP–HP, 2, rue Ambroise-Pare´, 75010 Paris, France Agence re´gionale de sante´ Iˆle-de-France, 35, rue de la Gare, 75019 Paris, France Service des urgences ce´re´brovasculaires, groupe hospitalier Pitie´-Salpeˆtrie`re, AP–HP, 47-83, boulevard de l’Hoˆpital, 75013 Paris, France

A R T I C L E I N F O

A B S T R A C T

Keywords: Stroke Resuscitation Mechanical ventilation Neurologic prognosis Care limitation

In face of any severe stroke, the questions for health professionals in charge of the patient are: will the handicap be acceptable for the patient? But can we predict an acceptable handicap for the patient? For his family? When we know that the cognitive disorders, consequences of severe stroke often modify, in a major way, the behaviour of these patients? Given these difficulties for estimate vital and functional prognosis and even more the quality of life of patients with severe stroke, collective reflexions between physicians and nurses are essential, reflexions taking into account preferences and values of patients. Use of resuscitation resources for severe stroke patients implies to offer then the best rehabilitation. So, questions about health pathways for severe stroke are essential: which structures for these patients, which technologies, which medical, medico-social and social supports, which human accompaniment the society can propose to the patients and to their family, so that they have an acceptable quality of life. ß 2013 Socie´te´ franc¸aise d’anesthe´sie et de re´animation (Sfar). Published by Elsevier Masson SAS. All rights reserved. R E´ S U M E´

Mots cle´s : AVC Re´animation Ventilation me´canique Pronostic neurologique Limitation des the´rapeutiques

Devant tout accident vasculaire ce´re´bral (AVC) se´ve`re, les professionnels de sante´ en charge du patient se posent la question : le handicap sera-t-il acceptable pour le patient ? Mais peut-on pre´dire un handicap acceptable pour le patient ? Pour sa famille et son entourage ? Quand on sait que les troubles cognitifs conse´quences de l’AVC se´ve`re modifient souvent de fac¸on majeure le comportement de ces patients ? Vu les difficulte´s pour e´valuer le pronostic vital et fonctionnel du patient et plus encore sa qualite´ de vie, les re´flexions colle´giales entre spe´cialistes et soignants sont indispensables, en tenant compte des pre´fe´rences et des valeurs des patients. Se donner les moyens de re´animer un patient victime d’AVC se´ve`re doit impliquer les moyens d’assurer ensuite la re´cupe´ration maximum possible. S’en suivent donc des questions sur le parcours de sante´ de ces patients : quelles structures, quelles technologies, quels accompagnements sanitaires, me´dico-sociaux, sociaux, humains, la socie´te´ peut proposer aux patients et a` leur entourage pour qu’ils aient une qualite´ de vie acceptable ? ß 2013 Socie´te´ franc¸aise d’anesthe´sie et de re´animation (Sfar). Publie´ par Elsevier Masson SAS. Tous droits re´serve´s.

1. Introduction

§ French NeuroAnesthesia and Intensive Care society Meeting, Paris, November 2013, 21st and 22nd: ‘‘The acutely brain-injured patient: consciousness and neuroethic’’. §§ This article is published under the responsibility of the Scientific Committee of the ‘‘35e Journe´e de l’Association des neuro-anesthe´sistes re´animateurs de langue franc¸aises’’ de la SFAR. The editorial board of the Annales franc¸aises d’anesthe´sie et de re´animation was not involved in the conception and validation of its content. * Corresponding author. E-mail address: [email protected] (F. Woimant).

Because of their frequency, their severity and their cost, strokes have been acknowledged, in France, as a health priority; a national action plan has been designed to improve stroke services. Indeed, stroke is the third cause of mortality for men, first for female and in 2010, cerebrovascular diseases were responsible for 32,500 death in France [1]. The ‘‘Disabilities and Health’’ surveys conducted in France in 2008–2009 have estimated at around 771,000 the number of people with a stroke history on the national territory, including 505,000 with sequelae; among them, nearly half had strong difficulties in activity of daily living (ADL) or were unable to

0750-7658/$ – see front matter ß 2013 Socie´te´ franc¸aise d’anesthe´sie et de re´animation (Sfar). Published by Elsevier Masson SAS. All rights reserved. http://dx.doi.org/10.1016/j.annfar.2013.12.002

F. Woimant et al. / Annales Franc¸aises d’Anesthe´sie et de Re´animation 33 (2014) 102–109

walk 500 meters, and 45.3% reported problems for at least one ADL. These patients lived mostly at home, 11.1% were in long-term care facilities [2]. The overall cost of care for stroke patients is considerable, estimated in 2007 at 5.3 billion Euros and we can assure that the care consumption will go on increasing because of the population aging [3]. A high proportion of in-hospital stroke related deaths are due to a limitation of treatments. Decisions to not start treatments, or to restrict, or even withdraw treatments considered as futile are discussed when the prognosis is very serious and the disability is considered unacceptable. These decisions are particularly complex. Stroke is a sharp break with the past life and confronts the patient and his family with severe risk of death and disability. The disorders of consciousness or cognitive impairments affecting communication or awareness of the deficit (anosognosia) are responsible for difficulties or an inability for the patient to participate in decisions concerning his own case. For the family, it is difficult from such a brutal event to appreciate the seriousness of the situation and to plan for the future by participating in a decision, which engages the patient, and also commit the family itself because of sequelae. Moreover, these decisions are based on a prediction of quality of life highly subjective and very difficult to determine for others. Furthermore, these decisions raise many ethical issues both at individual and collective level, such as the decision to introduce or continue intensive care for an organ donation. Another point is the place of disability in our society, what structures, what supports and what accompaniments may be available for severe stroke patients to improve their quality of life and that of their entourage. 2. What is a severe stroke? In the literature, severe stroke is most often defined as stroke admitted to intensive care unit (ICU) or for whom ICU admission is discussed. For the Stroke unit trialists’ collaboration, stroke is considered severe if the patient has impaired consciousness or if the Barthel’s index is less than or equal to 20 [4]. We can see that this definition does not involve comorbidities that may modify the prognosis of stroke or transient ischemic attack. Information acquired by clinical examination should be integrated with the results of further tests that will determine the volume of the cerebral lesion, the cause and mechanism of the stroke; for example, the risk of early death is higher in infarcts by occlusion of a large artery than in lacunar infarction associated with small artery disease. 3. What is a poor prognosis for the physician, for the patient, for the entourage? The definition of poor prognosis varies depending on the study. The Rankin scale reflecting mainly autonomy is widely used. This ordinal scale has seven levels, from no symptom scored at 0 to the death at 6, suggesting that the death (score 6) is worse than severe disability confining the patient to bed (score 5), whereas many might argue the opposite [5]. In a survey conducted with people at high risk of stroke, 45% of respondents considered that severe disability was worse than death [6]. While, in most studies on stroke, a score of less than or equal to 3 on the Rankin scale is considered a good outcome (patient walking without assistance, but needing help with some activities of daily living), many professionals believe than a score lower or equal to 2 (autonomous patient with activities of daily living but unable to carry all previous activities) corresponds better to the definition of a good prognosis. Conversely, in a meta-analysis of clinical trials on decompressive hemicraniectomy after cerebral infarction, the authors considered a Rankin score equal to 4 as acceptable (score 4 corresponds to a patient who cannot walk alone and who need

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assistance for activities of daily living) [7]. In a population-based epidemiological study, the scenario of decompressive hemicraniectomy was explained to 312 adults; only 16% of respondents would have opted for this surgery thinking that living with a Rankin score equal to 4 was inacceptable [8]. This raises the whole issue of acceptable disability for the patient and his family. More than disability, it is the quality of life of the patient and of his entourage that needs focus. Tengs’ literature review showed that the correlation between disability and quality of life (QOL) is low and QOL may be better in the case of a severe stroke than in a mild stroke [9]. Two years after a stroke, factors influencing independently the quality of life of patients are not only related to the physical disability, but also due to the psychological state of the patient, such as depression or to the social and family isolation and to the institutionalization [10]. Cognitive disorders are also an important factor [11]. The perceived quality of life for the patients is often better than that described by outsiders. The difference between perceived disability and experienced handicap, defined as ‘disability paradox’, highlights both the adaptation capacity of these patients to even severe handicaps but also the difficulty in representing the quality of life of others [12]. The survey of 168 patients with ‘‘locked-in syndrome’’ (LIS) is instructive in this aspect. Of 65 patients, 47 (72%) patients reported being happy, 82% had an enjoyable social life and 21% had daily-sustained activities. Forty-two percent of respondents wanted to be resuscitated in case of cardiac arrest [13]. This survey has bias, particularly the low response rate and it is possible that respondents are those with the best quality of life. However, this study shows that one can be satisfied with his quality of life even with such a severe disability like LIS. In a survey conducted in 2006 by S. Crozier on the basilar artery occlusions that may lead to a ‘‘locked-in syndrome’’, 72% of French vascular neurologists considered the LIS as a state worse than death [14]. The quality of life for the family and the entourage is another subject. Relatives’ reactions about the disability are extremely variable. Some people will quickly accept disabilities, others will never accept them, even going as far as to let psychologically ‘‘die’’ the ones close to them. More than the physical disability, cognitive disorders, mood disorders, behavior and personality disorders are generally acceptable with the most difficulty. 4. Can we establish a prognosis in acute stroke? In terms of mortality? In terms of disability? Prognosis evaluation of a stroke patient concerns not only the short-term risk of death but also the long-term risk of handicap. In the acute phase, this assessment is often difficult to achieve and yet is indispensable to better inform patients and their families. It is also a determining element decision for implementing or withdrawing treatment. Among these treatments, mechanical ventilation, artificial nutrition and decompressive surgery for cerebral infarcts and hemorrhages reduce the risk of death but increase the risk of disability. Stroke prognosis is highly variable and mainly related to the severity of the initial neurological deficit, the age, the associated comorbidities. The vital prognosis of intracerebral hemorrhage (ICH) is much more severe than that of cerebral infarction (CI). Mortality at one month of ICH and CI is respectively estimated at 37.5% and 11.3% [15]. The risk of death of cerebral infarctions is mainly due to the location and volume of the lesion. Mortality of malignant middle cerebral artery infarction, in the absence of surgical treatment, varies according to the studies from 50% to 80% [16]. In the absence of thrombolysis or mechanical revascularization procedures, basilar artery occlusion’s mortality is greater than 80% [17]. Main predictors of mortality and disability after cerebral infarction

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include age and NIHSS score. Three quarters of patients with NIHSS score greater than 17 are dead or very disabled at 3 months (not walking), while for a score under 17 they are only a third [18]. Models using age and NIHSS score [19] or NIHSS score and initial volume of stroke using MRI have also been proposed [20]. In malignant middle cerebral artery infarction, the decompressive hemicraniectomy has been studied in people under 65. A meta-analysis of 3 European randomized trials showed that hemicraniectomy reduced over 50% mortality rate. It allowed over 22% of patients to stay alive with a minor residual disability or a moderate one (Rankin 2 or 3) and 29% more survive with a severe disability (Rankin 4) [7]. Thus, the probability of surviving in conditions requiring the assistance of others for walking and realizing acts of daily life is multiplied by 10 (Rankin score 4) and the probability of survival with a score lower than or equal to 3 is doubled (handicap to walk without assistance, but need help with activities of daily living). So, the decision to make a hemicraniectomy should be discussed on case by case with the family explaining the reduction in mortality and the risk of dependency. Studies on quality of life after hemicraniectomy included small numbers of patients and are frequently realized by physicians treating patients, which may represent an important source of methodological bias [21]. The mortality rate of patients suffering from thrombosis of the basilar artery treated with intravenous thrombolysis, intra-arterial and/or mechanical revascularization procedures varies among studies between 40% to 50%; 20–30% of patients had a good recovery with a Rankin score between 0 and 2 [22,23]. The use of these treatments requires a multidisciplinary consultation in each case, to assess the risk/benefit of the act according to the severity of the neurological condition, to the predictable prognosis and to the complexity of the act. Regarding brain hemorrhage, main predictors of early mortality include a score of Glasgow under 8, the presence of intraventricular hemorrhage or hydrocephalus, occurrence of neurological deterioration, age greater than 80 years [16]. The ICH score is probably the most used currently. It is based on the score of Glasgow, the volume of the ICH, the presence of intraventricular hemorrhage, the infratentorial location of the ICH and the age; ICH score of 6 would be expected to be associated with a very high risk of mortality [24]. On functional outcome, Weimar et al. showed that the NIHSS score and age were independent predictors of prognosis in 100 days, prognosis defined by a Barthel Index greater than or equal to 95 at 3 months, (corresponding to autonomy for all activities of daily living) [25]. Importantly, the authors showed that this model is better than the physicians’ subjective prediction, being exact only in 31% of cases and probably reflecting a medical pessimism with the cerebral hemorrhage. Studies on the use of mechanical ventilation (MV) in stroke are often retrospective. Assessment criteria differ depending on the study, poor prognosis can be defined by death or by combined criteria, death and disability of varying severity. The prognosis of mechanically ventilated patients is generally poor. Approximately 60% of them died during the first month, 70% during the first year and 25 to 100% of survivors keep a very severe disability at one year [26]. The prognosis depends on the reasons of mechanical ventilation, it is better in the case of pulmonary ventilation or status epilepticus where ventilation can help to get over a difficult stage than when intubation is performed due to early neurological deterioration. Thus, altered consciousness or coma, absence of corneal reflexes before intubation and the presence of ischemic heart disease were independent predictor factors of death [27]. 5. Prognosis and level of therapeutic engagement None of the models developed to assess the prognosis of stroke in the acute phase takes into account the intentions of physicians,

whether they intend to treat ‘‘intensively’’ or to limit care. However, studies showed that the prognostic variable that best predicts patient outcome is the level of therapeutic engagement. Becker et al. showed that, in 2001, in a single-center study of 87 patients with intracerebral hemorrhage (ICH) [28]. Then, a study of 1421 patients with ICH confirmed that limitation or withdrawal of life-sustaining interventions was the most common cause of death (68%) followed by brain death (28%) [29]. In 2007, Zahanurec et al. showed in a cohort of 270 patients that early care limitations were independently associated with both short- and long-term all-cause mortality after intracerebral hemorrhage despite adjustment for expected predictors of ICH mortality [30]. The same team studied the validity of three mortality predictive models (ICH Score, ‘‘Cincinnati model’’ and ‘‘ICH grading scale’’) in 487 ICH patients with and without early do-not-resuscitate orders (DNR). Models correctly predicted mortality at 1 month of the entire cohort (42.7%). But for patients with DNR, 30-day mortality was 83.5%, while the models predicted mortality ranging from 57 to 78%. For patients treated more intensively, mortality was 20.8%, scores predicting mortality ranging from 26 to 41%. These predictive models were therefore found to be inaccurate for the two groups of patients, predicting a lower mortality in the group with limitations of care and higher mortality in the group of patients treated more intensively [31]. This shows that it is difficult to use at the individual level these predictive scores that were derived from cohorts of patients and that had not always taken into account the existence of therapeutic limitations. Studies on the DNR orders and other decisions to limit or withdraw care in severe stroke are rare and mainly from North America. Between 21 and 34% of hospitalized stroke patients have DNR orders [32–34]. It is interesting to note that 64% of these decisions are made within the first 48 hours suggesting a very early prognostic evaluation [33]. Large variations have been described for the use of the DNR order, reflecting these highly complex processes. The main factors associated with DNR orders include patient’s advanced directives when they exist, clinical condition before the stroke, comorbidities, stroke severity, occurrence of severe complications, perceived futility about the act of resuscitation, patients or family values and beliefs, and physician practices [33,35]. But other elements act as the practices and usage of the hospital. In a study conducted in California with more than 8000 patients suffering from a brain hemorrhage, mortality was directly related to the rate at which treating hospital use DNR orders, itself inversely proportional to the ability to perform invasive procedures such as hemicraniectomy or ventricular derivation [36]. DNR orders concern only the absence of resuscitation in case of cardiac arrest. However, in practice, this point is often the first step in limiting treatments. The study of Mohammed et al. became interested in the process of care for stroke patients according to the presence or not of DNR orders. In this study of 702 patients, 328 had DNR order. The 30-day mortality of patients with DNR orders was 67% versus 10% for others; of course, DNR patients were significantly more severe than others: mean age 81 years versus 75 years, 36% normal consciousness versus 79%, able to walk 1% versus 21% and no arm deficit 5% versus 24%. But, DNR patients were more likely to receive the majority of their stroke care in a stroke/rehabilitation unit, or be cared for on a stroke unit or by a stroke team or be given aspirin in case of infarcts [34]. In the United States, terminal extubations were performed in 5 to 10% of mechanical ventilated cerebral infarcts and 25–30% of cerebral hemorrhages. The decisions to continue or withdraw respiratory support are most often the result of a shared decision-making, based on prognosis, benefits and burden of treatment choices, and patient values and wishes [26]. A discussion with the entourage is essential to determine the level of therapeutic engagement. It aims to give the clearest information on the neurological outcome and

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Table 1 Acute hospitalization in intensive care unit after a recent stroke in ‘‘Iˆle-de-France’’ region during the first half of 2011. Stroke

All establishments

Establishments with stroke units a

Number Sex (% of men) Age (year) Mean/median Min–max Type of stroke (%) CHb/CIc/undetermined Length of stay (d) Mean/median Min–max Deceased (%) a b c

Establishments without stroke units a

Without ICU

With ICU

Without ICUa

With ICUa

6658 51.5

3902 55

255 60

1847 44

654 48

71/75 1–107

69/72 1–107

63/64 14–94

77/81 1–104

73/76 1–101

19/72/9

15/80/5

66/38/8

18/65/17

27/57/16

12.5/9 1–639 10

12.5/9 1–150 7

21/14 1–183 47

12/9 1–639 11

12/8 1–187 22

Intensive care unit. Cerebral hemorrhage. Cerebral infraction.

the study. Only the first admission of the year with a main diagnosis of stroke was retained for of each patient (6658 patients). The patients included and not deceased were then sought out in the all 2011 PA regional database. Only those whose admission for post acute hospitalization began during the same month or the month following discharge from acute care were considered as compatible with post acute stroke care and were included (1910 patients). The variables studied are, for the acute care: presence or not of a stroke unit in the hospital, admission or not in an ICU, use or not of mechanical ventilation (GLLD001 2, 4, 7, 8, 12, 13, 15). For the few patients who had a stay in intensive care and in stroke units (SU), only the ICU stay was retained. For the post acute hospitalization, we studied two types of structures: rehabilitation structures for neurological disorders and rehabilitation structures for polypathological elderly patients. The transfer through different rehabilitation structures being rare, it was only the first structure where the patient was admitted that was taken into account to characterize the rehabilitation structure. Tables 1–3 summarize the main results for the acute care. During the first half of 2011, 6658 people (mean age: 70 years) had been victim of a stroke. It was a cerebral infarction in 72% of cases, a cerebral hemorrhage in 19% of cases, and the stroke type was not specified for 9% of cases. Sixty-two percent of patients were admitted to an establishment with a stroke unit. The age of patients is higher in establishments without stroke unit (77 years) than in establishment with stroke unit (69 years). Fourteen percent of all patients (909) were admitted to an ICU; among

allows to acknowledge the values and preferences of any patient in such situation. The concept of futility has been developed to decide upon an inappropriate treatment under a very severe situation and the given goal of preserving patient’s dignity. This issue of proportionality of care requires, of course, to take into account the patient’s preferences, or his family or surrogate’s wishes. In those situations where the prognosis is catastrophic, decisions to limit care may be the only alternative to excessive therapeutic obstinacy. 6. What medicine for which results tomorrow? 6.1. The hospital pathway of severe stroke in the region ‘‘Iˆle-de-France’’ To try to answer this question ‘‘What medicine for which results tomorrow?’’, we sought to describe actual hospital care for severe stroke in a French region. Data were obtained from the ‘‘Iˆle-de-France’’ hospital discharge diagnosis databases: PMSI for acute care (AC) and PMSI for post acute hospitalization (PA). Work methodology was based on de Peretti’s study [37]. Patients with a main diagnosis of stroke were first selected in the 2011 AC database They were then linked in the PA databases, through the common anonymous patient number used in every hospitalization database. All admissions between January 1st and June 30th, recorded with a main diagnosis of stroke (I61, I63 and I64) were selected in the AC database. Transient ischemic attacks (TIA) and subarachnoid hemorrhage were excluded from

Table 2 Acute hospitalization with mechanical ventilation after a recent stroke in ‘‘Iˆle-de-France’’ region during the first half of 2011. Mechanical ventilation Stroke

All establishments

Establishments with stroke unit a

Number Sex (% men) Age (year) Mean/median Min–max Type of stroke (%) CHb/CIc/undetermined Length of stay (d) Mean/median Min–max Deceased (%) a b c

Intensive care unit. Cerebral hemorrhage. Cerebral infraction.

346 62

Establishments without stroke unit

Without ICU

With ICU

Without ICU

With ICUa

– –

207 (81%) 62

– –

139 (21%) 65

57/58 22–90

–

70/69 12–91

64/67 12–91

a

58/39/3

–

58/42/0

–

57/35/8

21/9 1–187 59

–

22/14 1–183 56

–

18/6 1–187 64

–

–

F. Woimant et al. / Annales Franc¸aises d’Anesthe´sie et de Re´animation 33 (2014) 102–109

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Table 3 Stroke patients admitted in a rehabilitation structure according to their initial management. Acute care hospitalization

Patients in rehabilitation structures (n) Patients ventilated during acute care (%) Age (year) Mean/median Min–max Sex (men %) Rehabilitation structure (%) Neurologic Geriatric Length of stay In rehabilitation structures (d) Mean/median Min–max a

All establishments

Establishments with stroke unit

Establishments without stroke unit

Without ICUa

With ICUa

Without ICUa

With ICUa

1910 4

1138 0

68 82

531 0

173 15

74/77 5–105 46

72/76 19–105 51

61/62 24–94 59

79/83 5–100 38

73/78 6–99 38

31 31

39 26

71 12

14 42

21 33

58/43 1–360

58/45 1–290

105/81 4–360

51/37 1–279

60/47 4–307

Intensive care unit.

them 255 (28%) were in an establishment with a stroke unit (mean age: 63 years) and 654 (72%) in an establishment without stroke unit (mean age: 73 years). Five percent of all patients were mechanically ventilated; it concerned 81% of patients admitted to ICUs in establishment with stroke unit and 21% of patients admitted to ICUs in establishment without stroke unit. The inhospital death rate of cerebral infarcts, intracerebral haemorrhage and mechanically ventilated stroke patients were respectively 7.5%, 25% and 59%. Among stroke patients hospitalized for acute care during the first half of 2011, 29% were admitted in a rehabilitation structure. Of these 1910 patients, 63% had been hospitalized for the initial phase in an establishment with a stroke unit, 13% had stayed in ICU and 4% were mechanically ventilated (Table 3). Ventilated patients in the acute phase in an establishment with a stroke unit had a particular profile characterized by a lower age (mean age: 61 years), a high proportion of men (59%), more frequent admission in neurological rehabilitation structure (71%) and a long length of stay in rehabilitation structure (105 days). These results call for some comments. Any stroke, regardless of age, should be admitted in stroke unit. But the capacity of stroke unit makes it currently not possible to treat all strokes in these specialized structures. Also, arise the question of the admission decisions in stroke unit. The recommendations of The French National Authority for Health (Haute Autorite´ de sante´, or HAS) provide that any act of medical regulation for a patient with suspected stroke or transient ischemic attacks comprise calling the nearest stroke unit neurologist, the orientation being determined jointly between the regulator and the stroke unit physicians [38]. Are stroke unit physicians contacted for all patients with suspected stroke or is it to be feared that the decision not to offer the optimum patient care may be based on prognostic assessment made by only one doctor? How are taken admission decisions for ICU and mechanical ventilation? As seen in this study, the patients who are admitted in an ICU, depending on whether or not the institution has within it a stroke unit, are not the same. It is likely that a number of patients admitted to intensive care in the structures without stroke unit would be monitored in intensive stroke care in establishments with stroke unit. There also arises the question of collegiality and expertise decisions of ICU admission or limitation of treatment in institutions that do not have neurologists, stroke unit nor neurology department. Following the acute phase, 26% of patients whom had an ICU stay are admitted in rehabilitation structures. Care in specialized neurological or geriatric rehabilitation structures is more common when the patient was initially managed in an establishment with a stroke unit (81%) than in a non-stroke unit establishment (54%).

6.2. What medicine for which results tomorrow? These results rise the importance of identifying health pathways for severe stroke. Neuro-vascular disease is both urgent and chronic affection. It is all the processes from the acute phase to the return home that must be thought. The main questions that concern both the initial phase and the subsequent steps are: how to avoid aggressive treatment, how to avoid unjustified limitation of treatment, how to improve the outcome of the survivors and the quality of life of relatives? This is an important responsibility for the physician to predict and make those decisions, even though he has doubts and difficulties in communicating with a patient with a fluctuating level of consciousness or with cognitive impairment and when the family or surrogates are often destabilized. Seen the difficulties to evaluate the functional and vital prognosis of the patient and even more the quality of life of the patient and his entourage, collegial discussions between specialists and nurses seem indispensable. It is also essential to limit the weight of sequelae and complications by appropriated management of patients in establishments with trained and specialized personnel. 6.2.1. The multidisciplinary and professional expertise During all phases of stroke care, exchanges of points of view are essential to avoid decisions based on personal beliefs which can lead to self-fulfilling prophecies. Analysis of complex situations involves not only prognostic assessments from scientific studies, but also, and especially in the case of a stroke, practical knowledge from experience. One of the first issues is the admission or not into stroke unit. Few structures have been as evaluated as, as compared as, as metaanalyzed as the stroke units. Their effectiveness has been demonstrated and it should be noted how original is the approach to show the benefit of an organization of care, according to the model of the randomized clinical drug trial. The meta-analysis from the Cochrane Collaboration focused on 31 randomized trials and 6936 patients and compared an organized care (Stroke Unit) to conventional care system [4]. The three endpoints studied were death, dependency and institutionalization at the end of the follow-up period (median 1 year). Regardless of the chosen criteria, the results are in favor of stroke units and are very robust statistically: significant reduction in the risk of death by 18%, death or institutionalization by 19% and death or dependency by 21%. The number of deaths is reduced without increasing the number of dependent patients. It is important to note that most studies included in this meta-analysis were performed before the thrombolysis era. These data were since confirmed in the general population, outside of randomized trials [39].

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For the region ‘Iˆle-de-France’, in 2011, only 62% of stroke patients were admitted to an institution with stroke unit. This compares to an insufficient number of beds in the stroke units. Also, in order to make the often difficult decision of the admission or not in the stroke unit during the acute phase, an immediate dialogue between the pre-hospital actors, the emergency physicians, and the neurologists of stroke unit is essential. To facilitate these discussions are implemented telemedicine solutions between emergency services and stroke units enabling visioconsultations associated with images transfer. In this context of urgency, it is also legitimate to question about severe stroke ICU admission. It does not exist to date specific criteria for ICU admission, but recommendations formalized by experts have recently been proposed [40]. They point out that the decision to resuscitate depends on prognosis neurological indicators, on associated organ failures, on the previous state but also on the wishes of the patient or his family and his way of life (entourage and relatives). These recommendations lead to distinguish ressuscitation decisions taken in emergency situations from anticipated decisions (resuscitation in case of deterioration). Indeed, in the context of the emergency, the uncertainty of neurological diagnosis and prognosis in acute phase can justify resuscitation in the patient’s interest when all the elements necessary for taking decision are not documented. For patients already hospitalized for a stroke, the possibility of resuscitation in case of worsening should be an anticipated decision, concerted and argued, among intensivists and neurologists. Should also be involved in these decisions, physical and rehabilitation medicine (PRM) physicians and geriatricians who will have to accompany the surviving patients. Indeed, the experience of physicians who follow these patients for long term is essential. Hospital intensivists and neurologists have little knowledge about the outcome of patients with loss of autonomy that does not always return visit in hospitals. They are not always familiar with the techniques that can be deployed at home or institutions (home automation, etc.). Thus, with regard to the assisted communication, equipment will be available for a patient in a locked-in syndrome, but will very rarely be for an aphasic patient. Similarly, can we judge at the initial phase of the future quality of life of a patient if we never pushed the door of an institution for severely brain-injured patients? Participation in meetings with stroke patients association is particularly instructive to better understand the post stroke life. We can see then that the physical disability is not the most problematic, but the cognitive impairment and the behavior changes of the patient are the most difficult to accept by the entourage. However, if the physical disability is difficult to predict, the cognitive sequelae and behavioral changes are all the more. The essential factors of quality of life are probably psychic integrity and social life. While stroke is a very severe pathology, there is little literature on palliative care for this disease. The management of a patient who quickly goes from a curative to a palliative stage can be very destabilizing for medical team, nurses and family. There again, collegiality sets the questioning and support the professionals in difficult choices. 6.2.2. Patient and entourage information The care plan should be centered on the patient, whose wishes and values are asked for, looking for any advance directives and gathering testimonies of relatives and/or involving the trusted person [41]. But if the prognosis in acute phase is too vague to make medical decisions or too complex for professionals, how can the families understand the stakes? Klein’s survey performed on an adult German population showed a significant proportion of people with no cognitive or intellectual impairment but without medical culture had difficulty understanding complex medical

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situations, such as the decompressive hemicraniectomy of cerebral infarction [8]. This may lead the physician to influence the family to finalize extremely important decisions for which specialists may have different opinions. Collegial consultation is particularly important in this context of very acute disease, when the prognosis is uncertain for the physicians and when communication can be difficult. 6.2.3. Severe stroke pathways from acute care to home health services or institutionalization This essential multidisciplinary management of severe stroke requires the care to be integrated into existing stroke pathways as defined by ministry circulars. These stroke pathways has two main objectives:  to plan a nationwide coverage by organized networks, around the stroke units, in collaboration with the neurosurgery and neuro-interventional radiology departments, to ensure that anyone with stroke access this care complying to emergency standards of quality and safety;  to integrate all stakeholders to ensure continuity of health care management, whether carried out by hospital staff or liberal, social and medico-social actors to prevent or reduce the sequelae of the disease. Intensive care units and particularly those located away from establishments with stroke units must be integrated into these stroke networks, as will soon be emergency services. The use of telemedicine (video-consultation and transfer of neuro-imaging), should improve communication between distant health professionals and therefore the reliability of shared diagnoses and therapeutic decisions. Particular attention should be given to various ethical issues including health professionals about the limitations and withdrawals of active treatment, in accordance with the Leonetti law. Therefore, palliative care teams must be integrated into these stroke networks, as well as hospital coordination of organ donation. The issue of organ donation in stroke serious situations is particularly complex and the resulting medical decisions deserve a lot of caution. There are two main situations: first where the stroke is straight away massive and requires the initiation of mechanical ventilation (e.g. certain cerebral hemorrhage) and a second where the patient will get worse quickly, sometimes in a few hours or days, and the issue of transfer to ICU and mechanical ventilation will arise, not so much for the patient than for its organs, when the situation is considered catastrophic and the risk of progression to brain death is very likely. If in the first situation medical decisions and notification of relatives are relatively simple (even if they remain of course difficult), they are much more complex in the second case, where the treatment intensification is not in the patient’s interest but in the community’s. Organ donation requires, in this particular context, a concerted reflection between physicians and especially an announcement adapted and very cautious to the patient’s relatives, ideally with the help of organ donation coordinators. Finally, the principle of organ donation after cardiac arrest following a decision to stop active treatment (defined as M3 according to the classification of Maastricht) is also possible. Permitted in some countries such as USA, Canada, UK, the Netherlands and Belgium, this is currently under discussion in France. This practice in patients with severe stroke nevertheless raises many ethical questions, because it questions the reasons for stopping treatment, particularly neurological prognosis and future quality of life, sometimes described as ‘‘unbearable’’. The functional benefit of units for the rehabilitation of stroke patients has been shown in France [42]. Care pathways in

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rehabilitation of stroke patients have already been defined by physical and rehabilitation medicine (PRM) societies taking into account the severity of impairments, functional prognosis and needs of patients [43]. These networks will also integrate post intensive care rehabilitation structures ICU, still underdeveloped in France, but that avoid aggravation of disability during the phases of awakening and to preserve the patients functional chances for example by using treatments with botulinum toxin associated with reeducation to avoid deformations as a result of significant spasticity. Home return and home-based care of these severely disabled patients are often complicated. It requires to seek out for different organizations to assist in funding for improving the home environment and purchasing of special equipment. But the major difficulty at home is to ensure the continuity of human help. The role of the family and of the caregivers is essential but often difficult because of the changes that occur within the family, either in the respective roles of each and every one or in the emotional relationships [44]. The burden of care for people with palsy and cognitive disorders is often significant and the impact of these components on the quality of life of the informal caregiver is very important, hence the necessity of support services as home health services and medico-social and social structures. It is also essential to allow the caregiver time away from the patient’s home by providing the patient with adult day centers and respite care services [45]. Regular multidisciplinary assessments of patients who survive severe stroke and of caregivers are needed. They can be organized either within the hospital sector or by mobile teams at home. When returning home is not possible, the patient is oriented in an institution according to the patient’s age. These structures for severely brain-injured young patients are too few, and must be developed in France. For elderly and dependent stroke patients, some institutions should be tailored to the severity of the care required for these patients. 7. Conclusion Use of resuscitation resources for severe stroke patients requires to provide the means allowing then the best rehabilitation and the best quality of life. The organization of care for severe stroke should be structured in France under the national stroke plan 2010–2014. It is a health pathway that we must build from the acute phase to return home, incorporating tough decisions to notresuscitate, limitation or withdrawal of treatment throughout the course and trying the best to define in each case the notion of acceptability of disability regarding the patient, family, relatives, caregivers, institutions and society. Disclosure of interest The authors declare that they have no conflicts of interest concerning this article. Acknowledgements The authors would like to thank Jean-Baptiste Gardette for his help. References [1] Aouba A, Eb M, Rey G, Pavillon G, Jougla E. Donne´es sur la mortalite´ en France : principales causes de de´ce`s en 2008 et e´volutions depuis 2000. BEH 2011;22: 249–55. [2] de Peretti C, Grimaud O, Tuppin P, Chin F, Woimant F. Pre´valence des accidents vasculaires ce´re´braux et de leurs se´quelles et impact sur les activite´s de la vie quotidienne : apports des enqueˆtes de´claratives Handicap sante´ me´nages et Handicap sante´ institution, 2008–2009. BEH 2012;1:1–6.

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