INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
Background: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC).
Methods: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher’s exact tests, likelihood ratios and the Kruskal–Wallis test were used to assess differences between the two cohorts.
Results: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p = 0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p = 1).
Conclusions: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.
In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.
Early in the COVID-19 pandemic, I got a call from an internal medicine resident for a new palliative care consult. The resident was at a loss; she did not know how to advise the patient's family about her prognosis. Should she place a feeding tube in this patient who, recovering from COVID-19, now could not wake up?
OBJECTIVES: To determine the frequency of advance directives or directives disclosed by healthcare agents and their influence on decisions to withdraw/withhold life-sustaining care in neurocritically ill adults.
DATA SOURCES: PubMed, Embase, and Cochrane databases.
STUDY SELECTION: Screening was performed using predefined search terms to identify studies describing directives of neurocritically ill patients from 2000 to 2019. The review was registered prior to the screening process (International Prospective Register of Systematic Reviews [PROSPERO]-Identification number 149185).
DATA EXTRACTION: Data were collected using standardized forms. Primary outcomes were the frequency of directives and associated withholding/withdrawal of life-sustaining care.
DATA SYNTHESIS: Out of 721 articles, 25 studies were included representing 35,717 patients. The number of studies and cohort sizes increased over time. A median of 39% (interquartile range, 14-72%) of patients had directives and/or healthcare agents. The presence of directives was described in patients with stroke, status epilepticus, neurodegenerative disorders, neurotrauma, and neoplasms, with stroke patients representing the largest subgroup. Directives were more frequent among patients with neurodegenerative disorders compared with patients with other illnesses (p = 0.043). In reference to directives, care was adapted in 71% of European, 50% of Asian, and 42% of American studies, and was withheld or withdrawn more frequently over time with a median of 58% (interquartile range, 39-89%). Physicians withheld resuscitation in reference to directives in a median of 24% (interquartile range, 22-70%).
CONCLUSIONS: Studies regarding the use and translation of directives in neurocritically ill patients are increasing. In reference to directives, care was adapted in up to 71%, withheld or withdrawn in 58%, and resuscitation was withheld in every fourth patient, but the quality of evidence regarding their effects on critical care remains weak and the risk of bias high. The limited number of patients having directives is worrisome and studies aiming to increase the use and translation of directives are scarce. Efforts need to be made to increase the perception, use, and translation of directives of the neurocritically ill.
Purpose: Scarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.
Materials and methods: A prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.
Results: 8 (25%) physicians and 24 (75%) nurses participated in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.
Conclusions: Our findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals.
Background: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire).
Methods: Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members.
Results: The final version of the scale contains a total of 28 questions divided into six domains (end-of-life control, keeping patients alive, trust in doctors/treatment, trust in social support, sense of suffering, and dependence/loss of control) and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire.
Conclusions: The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.
Prognosis after severe brain injury is highly uncertain, and decisions to withhold or withdraw life-sustaining treatment are often made prematurely. These decisions are often driven by a desire to avoid a situation where the patient becomes 'trapped' in a condition they would find unacceptable. However, this means that a proportion of patients who would have gone on to make a good recovery, are allowed to die. I propose a shift in practice towards the routine provision of aggressive care, even in cases where the probability of survival and acceptable recovery is thought to be low. In conjunction with this shift, I argue in favour of a presumption towards withdrawing life-sustaining treatment, including artificial nutrition and hydration, when it becomes clear that a patient will not recover to a level that would be acceptable to them. I then respond to three potential objections to this proposal.
BACKGROUND AND PURPOSE: Critically ill patients require a careful approach for prognosis and decision-making. The German health legislation aims to strengthen the role of advance directives (ADs) and health-care proxies (HCPs). Their impact within a dedicated neurocritical care setting is unknown. This study aimed to assess the practice of withdrawal or withholding of life-sustaining therapy (WOLST) in a German neurointensive care unit (NICU) focusing on whether AD or HCP is associated with timing and treatment intensity.
METHODS: Data on patients who died after WOLST at a dedicated NICU of a German university hospital, from 2010 to 2013, were retrospectively analyzed.
RESULTS: Of 400 deceased patients, 310 (77.5%) died after initiation of WOLST. Among them, 68 (21.9%) were identified to have AD or HCP or both (AD + HCP). WOLST patients with AD, HCP, or AD + HCP were older than those without (median age: 77 vs 72 years, P < .001) but did not show any other distinct baseline features. There was no difference in the specific neurocritical care measures between the groups. Poisson regression analysis showed no significant difference in the probability of time-dependent WOLST initiation between those with and without AD/HCP, after adjusting for age and sex (adjusted incidence rate ratio, 1.10; 95% confidence interval, 0.94-1.28; P = .244).
CONCLUSIONS: In this single-center study of mainly cerebrovascular NICU patients, AD or HCP was neither associated with an earlier WOLST nor associated with a difference in treatment intensity before WOLST. Further prospective studies should assess the emerging concept of advance care planning in neurocritical care.
Evaluating a patient with brain injury (traumatic or not traumatic) is challenging. Potential outcomes are often unclear as the manifestations of brain injuries evolve over time and can result in dynamic changes in conciousness. This can create confusion for prognostication and clinnical decision making. Appropriate classification of disorders of conciousness (DOC) involves a careful assessment of neurological function at the bedside and an understanding of the expected time frame during which neurological function can evolve. Although neurological assessment and diagnosis is the role of a neurologist, it is important for palliative care clinicians to understand the diagnosis so they can appropriately educate and counsel families. This Fast Fact aims to help clinicians understand the terminology around DOC. Prognosis in DOC will be discussed in a future Fast Fact.
Background: Given a slow course of disease, end-of-life issues are understudied in neuroendocrine tumors (NETs). To date, there are no data regarding symptoms at the end of life. This study examined symptom trajectories and factors associated with high symptom burden in NETs at the end of life.
Methods: We conducted a retrospective cohort study of NET patients diagnosed from 2004 to 2015 and who died between 2007 and 2016, in Ontario, Canada. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to administrative healthcare datasets. Moderate-to-severe symptom scores (= 4 out of 10) in the 6 months before death were analyzed, with multivariable modified Poisson regression identifying factors associated with moderate-to-severe symptoms scores.
Results: Among 677 NET decedents, 2579 symptom assessments were recorded. Overall, moderate-to-severe scores were most common for tiredness (86%), wellbeing (81%), lack of appetite (75%), and drowsiness (68%), with these proportions increasing as death approached. For symptoms of lack of appetite, drowsiness, and shortness of breath, the increase was steepest in the 8 weeks before death. On multivariable analyses, the risk of moderate-to-severe symptoms was significantly higher in the last 2 months before death and for patients with shorter survival (< 6 months). Women had higher risks of anxiety, nausea, and pain.
Conclusion: A high prevalence of moderate-to-severe symptoms was observed for NETs at the end of life, not previously described. The proportion of moderate-to-severe symptoms increases steeply as death nears, highlighting an opportunity for improved management. Combined with identified factors associated with moderate-to-severe symptoms, this information is important to improve patient-centred and personalized supportive care for NETs at the end of life.
In 2010, the American Academy of Neurology (AAN) published updated official guidelines for specific practices involved in the determination of death by neurologic criteria for adult patients, otherwise known as brain death. Most states, however, do not have laws mandating the standard adoption of the AAN guidelines. The responsibilities for creating and implementing brain death determination policies thus falls on individual hospitals. As a result, significant variability in practice exists between hospitals and even between providers. This review highlights the ways in which and the extent to which adult brain death determination varies across the US, while also making the case that such persistent levels of heterogeneity call for improvements in standardizing training in brain death determination.
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
BACKGROUND: Futile care in the neuroscience intensive care unit (NSICU) can create moral distress for clinicians who may differ in their interpretation of the value of such care. We sought to compare the perception of provision of futile care in the NSICU among physicians, advanced practice providers, and intensive care unit registered nurses (ICURNs).
METHODS: This is a cross-sectional study of 77 patients. A standardized questionnaire was used to ask clinicians whether care being provided to NSICU patients admitted for more than 48 hours was futile and whether they would want that treatment for their loved one. Demographics, diagnosis, and reason for treatment futility were collected. Futility was analyzed independently and in an aggregate manner (yes/probable combined and no/probable combined).
RESULTS: The sample median age was 61 (SD, 17.179) years, men comprised 53% of the sample, and 68% were white. Collectively, there were 77 futile responses (33%), 136 nonfutile (59%), and 18 probable futile (8%). Physicians and nurse practitioners deemed futility in 36% of patients; ICURNs, in 27% (P < .05). Age, race, or diagnosis did not impact futility perception. The treatment was acceptable for a loved one in 53% of cases for physicians, 43% for advanced practice providers, and 48% for ICURNs (P < .05). Interobserver agreement for futility was 0.469 (CK), and pairwise agreement was 71%. Interobserver agreement for treatment acceptable for a loved one was 0.568 (CK), and pairwise agreement was 78%.
CONCLUSIONS: Clinicians consider NSICU care futile in one-third of patients, but correlation among them is moderate; no specific variable is associated with such perception.
From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the general skepticism regarding these reports, assuming that the family was in denial and was misinterpreting spinal myoclonus (a rapid, involuntary twitch generated by the spinal cord) as volitional. The family had noticed that when Jahi's heart rate was above eighty beats per minute, she was more likely to respond, as though the heart rate reflected some sort of inner level of arousal. So they began to make video recordings. I have been privileged to be entrusted with copies of these recordings, forty-eight of which proved suitable for assessing alleged responsiveness. All have been certified by a forensic video expert as unaltered. The first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus. In fact, they did not resemble any type of spontaneous, involuntary movement described in patients paralyzed from high spinal cord lesions.
Background: Older patients with traumatic brain injury (TBI) have higher mortality and morbidity than their younger counterparts. Palliative care (PC) is recommended for all patients with a serious or life-limiting illness. However, its adoption for trauma patients has been variable across the nation. The goal of this study was to assess PC utilization and intensity of care in older patients with severe TBI. We hypothesized that PC is underutilized despite its positive effects.
Materials and methods: The National Inpatient Sample database (2009-2013) was queried for patients aged =55 y with International Classification of Diseases, Ninth Revision codes for TBI with loss of consciousness =24 h. Outcome measures included PC rate, in-hospital mortality, discharge disposition, length of stay (LOS), and intensity of care represented by craniotomy and or craniectomy, ventilator use, tracheostomy, and percutaneous endoscopic gastrostomy.
Results: Of 5733 patients, 78% died in hospital with a median LOS of 1 d, and 85% of the survivors were discharged to facilities. The overall PC rate was 35%. Almost 40% of deaths received PC, with nearly half within 48 h of admission. PC was used in 26% who had neurosurgical procedures, compared with 35% who were nonoperatively managed (P = 0.003). PC was associated with less intensity of care in the entire population. For survivors, those with PC had significantly shorter LOS, compared with those without PC.
Conclusions: Despite high mortality, only one-third of older patients with severe TBI received PC. PC was associated with decreased use of life support and lower intensity of care. Significant efforts need to be made to bridge this quality gap and improve PC in this high-risk population.
Patients with primary brain tumors may present with neuropsychiatric symptoms such as behavioral and personality changes at any point during the disease course. Symptoms may be due to tumor treatment, the disease itself, or due to therapy for symptoms such as seizures. Levetiracetam is an attractive choice of antiepileptic medication because of relatively fewer drug interactions and may be administered through the subcutaneous route. Aggressive behavior in advanced brain tumors can have a profound negative impact on patients and their families and carers, particularly when deteriorating toward death. We report a case of neuropsychiatric symptoms in progressive glioblastoma multiforme while on stable levetiracetam doses, which improved with reduction and cessation of the drug. We review the existing literature on seizures in primary brain tumors, their antiepileptic drug management, and the risk of consequent neuropsychiatric adverse events.
BACKGROUND: Multilevel uncertainty exists in the treatment of devastating brain injury and variation in end-of-life decision-making is a concern. Cognitive and emotional doubt linked to making challenging decisions have not received much attention. The aim of this study was to explore physicians´ doubt related to decisions to withhold or withdraw life-sustaining treatment within the first 72h after devastating brain injury and to identify the strategies used to address doubt.
METHOD: Semi-structured interviews were conducted with 18 neurocritical care physicians in a Norwegian trauma centre (neurosurgeons, intensivists and rehabilitation specialists) followed by a qualitative thematic analysis.
RESULT: All physicians described feelings of doubt. The degree of doubt and how they dealt with it varied. Institutional culture, ethics climate and individual physicians´ values, experiences and emotions seemed to impact judgements and decisions. Common strategies applied by physicians across specialities when dealing with uncertainty and doubt were: 1. Provision of treatment trials 2. Using time as a coping strategy 3. Collegial counselling and interdisciplinary consensus seeking 4. Framing decisions as purely medical.
CONCLUSION: Decisions regarding life-sustaining treatment after devastating brain injury are crafted in a stepwise manner. Feelings of doubt are frequent and seem to be linked to the recognition of fallibility. Doubt can be seen as positive and can foster open-mindedness towards the view of others, which is one of the prerequisites for a good ethical climate. Doubt in this context tends to be mitigated by open interdisciplinary discussions acknowledging doubt as rational and a normal feature of complex decision-making.
INTRODUCTION: The proportion of hospitals with specialist palliative care services in the USA has increased substantially over the past decade. Severe acute brain injury presents with unique challenges, especially regarding quality of life. The growth and increased recognition of neurocritical care as a subspecialty has not been paralleled by studies regarding how best to integrate palliative care for this unique patient population. Thus, we surveyed members of the Neurocritical Care Society (NCS) to explore current practice patterns, perceptions, and preferences regarding integration of palliative care in the neurological intensive care unit (Neuro-ICU).
METHODS: We created a 19-item survey using SurveyMonkey to assess practice patterns, perceptions, and preferences of neurointensivists regarding integration of palliative care in the Neuro-ICU. The survey, approved by the NCS research committee, was distributed to all active members of the NCS.
RESULTS: A total of 424 NCS members representing 19% of the 2200 list serve members completed the survey. The majority (58%) of respondents were attending physicians, who worked primarily in a dedicated Neuro-ICU (67%), at university affiliated academic medical centers (65%). Palliative care consultations are utilized infrequently (< 11%) by the majority of the respondents (59%). The most common indication for a palliative consultation was to discuss goals of care and make treatment decisions (73%). A large majority (77%) either agreed or strongly agreed that palliative care services were utilized in the management of difficult cases apart from discussions regarding withdrawal of life sustaining therapy. Palliative care needs of Neuro-ICU patients were considered different from patients in other ICUs by the majority of respondents (66%).
CONCLUSION: Our study provides insights into the current perceptions, practice patterns, and preferences of neurointensivists as it relates to palliative care consultation in the Neuro-ICU.