Aim: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic.
Design and Setting: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic.
Methods: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals).
Results: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study—the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services.
Conclusion: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.
Comment associer ces entités, maladie neurologique, polyhandicap et soins palliatifs pédiatriques, faire coexister ces réalités marquées par l’hypothétique, la rupture ? Comment faire lorsque c’est un réel écrasant qui vient faire irruption ? Lorsque la temporalité se fige, lorsqu’un décalage s’opère entre désirs et potentialités, lorsque la symbolisation fait défaut ? Ces questions et leurs soubassements n’appellent évidemment pas de réponse univoque ; de multiples champs de réflexion et de pensée – philosophique, éthique, social, etc. – leur sont rattachés qui ne pourront malheureusement pas être déployés ici. Dans cet article, l’auteur prend plutôt le chemin de traverse de sa pratique clinique pour tenter d’illustrer comment, au-delà des soins palliatifs, ce dont il est question, ce qui est sur le devant de la scène, c’est la maladie et ses effets dévastateurs potentiels sur le lien et la rencontre avec l’enfant.
L'ouvrage évoque l'accompagnement des personnes atteintes de la maladie d'Alzheimer. A partir de son expérience d'infirmière, l'auteure partage les témoignages des familles venues dans le centre d'accueil de jour qu'elle a ouvert. Des points de vue de neurologues et de neuropsychologues sont également présentés.
Whole brain failure constitutes the diagnostic criterion for death determination in most clinical settings across the globe. Yet the conceptual foundation for its adoption was slow to emerge, has evoked extensive scientific debate since inception, underwent policy revision, and remains contentious in praxis even today. Complications result from the need to relate a unitary construal of the death event with an adequate account of organismal integration and that of the human organism in particular. Advances in the neuroscience of higher human faculties, such as the self, personal identity, and consciousness, and dynamical philosophy of science accounts, however, are yielding a portrait of higher order global integration shared between body and brain. Such conceptual models of integration challenge a praxis relying exclusively on a neurological criterion for death.
Palliative care services are beneficial for pediatric neurology patients with chronic, life-limiting illnesses. However, timely referral to palliative care may be impeded due to an inability to identify appropriate patients. The aim of this pilot case-control study was to test a quantitative measure for identifying patients with unmet palliative care needs to facilitate appropriate referrals. First, a random subset of pediatric neurology patients were screened for number of hospital admissions, emergency center visits, and problems on the problem list. Screening results led to the hypothesis that having six or more hospital admissions in one year indicated unmet palliative care needs. Next, hospital admissions in the past year were counted for all patients admitted to the neurology service during a six-month period. Patients with six or more admissions as well as age- and gender-matched controls were assessed for unmet palliative care needs. In hospitalized pediatric neurology patients, having six or more admissions in the preceding year did not predict unmet palliative care needs. While this pilot study did not find a quantitative measure that identifies patients needing a palliative care consultation, the negative finding highlights an important distinction between unmet social needs that interfere with care and unmet palliative care needs. Further, the method of screening patients used in this study was simple to implement and provides a framework for future studies.
Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.
Background: Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. Methods: We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. Results: A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions.
Conclusion: In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.
Neurosurgical interventions frequently occur in an emergency setting. In this setting, patients often have impaired consciousness and are unable to directly express their values and wishes regarding their treatment. The limited time available for clinical decision making has great ethical implications, as the informed consent procedure may become compromised. The ethical situation may be further challenged by different views between the patient, family members, and the neurosurgeon; the presence of advance directives; the use of an innovative procedure; or if the procedure is part of a research project. This moral opinion piece presents the implications of time constraints and a lack of patient capacity for autonomous decision making in emergency neurosurgical situations. Potential solutions to these challenges are presented that may help to improve ethical patient management in emergency settings. Emergency neurosurgery challenges the respect of autonomy of the patient. The outcome in most scenarios will rely on the neurosurgeon acting in a professional way to manage each unique situation in an ethically sound manner.
INTRODUCTION: Acute neurological illness often results in severe disability. Five-year life expectancy is around 40%; half the survivors become completely dependent on outside help.
OBJECTIVE: Evaluate the symptoms of patients admitted to a Hospital ward with a diagnosis of stroke, subarachnoid hemorrhage or subdural hematoma, and analyze the role of an In-Hospital Palliative Care Support Team.
MATERIAL AND METHODS: Retrospective, observational study with a sample consisting of all patients admitted with acute neurological illness and with a guidance request made to the In-Hospital Palliative Care Support Team of a tertiary Hospital, over 5 years (2012-2016).
RESULTS: A total of 66 patients were evaluated, with an age median of 83 years old. Amongst them, there were 41 ischaemic strokes, 12 intracranial bleedings, 12 subdural hematomas, and 5 subarachnoid hemorrhages. The median of delay between admission and guidance request was 14 days. On the first evaluation by the team, the GCS score median was 6/15 and the Palliative Performance Scale (PPS) median 10%. Dysphagia (96.8%) and bronchorrhea (48.4%) were the most prevalent symptoms. A total of 56 patients had a feeding tube (84.8%), 33 had vital sign monitoring (50.0%), 24 were hypocoagulated (36.3%), 25 lacked opioid or anti-muscarinic therapy for symptom control (37,9%); 6 patients retained orotracheal intubation, which was removed. In-hospital mortality was 72.7% (n=48).
DISCUSSION AND CONCLUSION: Patients were severely debilitated, in many cases futile interventions persisted, yet several were under-medicated for symptom control. The delay between admission and collaboration request was high. Due to the high morbidity associated with acute neurological illness, palliative care should always be timely provided.
Background: Outcome predictions in patients with acute severe neurologic disorders are difficult and influenced by multiple factors. Since the decision for and the extent of life-sustaining therapies are based on the estimated prognosis, it is vital to understand which factors influence such estimates. This study examined whether previous professional experience with rehabilitation medicine influences physician decision-making.
Methods: A case vignette presenting a typical patient with an extensive brain stem infarction was developed and distributed online to clinical neurologists. Questions focused on prognosis, interpretation of an advanced directive, whether to withdraw life-sustaining treatments and information on prior rehabilitation experience from the survey respondent.
Results: Of the participating neurologists, 77% opted for the withdrawal of life-sustaining therapies (n = 70; response rate: 14.8%). This decision was not affected by age, gender, or length of clinical experience. Neurologists with experience in rehabilitation medicine tended to estimate a more positive prognosis than neurologists without, but this result was not significant (p = .13). There was an association between the intervention chosen and previous experience in rehabilitation; neurologists with experience in rehabilitation medicine opted significantly more often (31.8%) for continuing life-sustaining treatments than neurologists without such experience (8.7%, p = .04).
Conclusion: Our results indicate that there are subjective factors influencing decisions to limit life-sustaining treatments that are based on previous professional experience. This finding emphasizes the variability and cognitive bias of such decision processes and should be integrated into future guidelines for specialist training on end-of-life decision-making.
Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care.
Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimer’s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patient’s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patient’s cognitive impairments and lay out dementia-specific scenarios.
Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP.
BACKGROUND: Involvement of the palliative care service has potential for patient and family benefit in critically ill patients, regardless of etiology. Anecdotally, there is a lack of involvement of the palliative care (PC) service in the neuro-intensive care unit (neuro-ICU), and its impact has not been rigorously investigated in this setting.
OBJECTIVE: This study aims at assessing the effect of early involvement of the PC service on end-of-life care in the neuro-ICU.
DESIGN: Demographic variables and elements pertaining to the end-of-life care were obtained retrospectively via the electronic medical record from patients receiving their care at the University of Alabama at Birmingham Hospital neuro-ICU. The patient population was divided into two cohorts: patients who received PC services and patients who did not. Contingency analysis was performed to assess for associations with PC service involvement.
RESULTS: A total of 149 patients were included in the study. PC services were included in 56.4% of the cases. Involvement of the PC service led to more code status changes to comfort care–do-not-resuscitate p = 0.0021. This was more often a decremental change to less invasive measures rather than a direct change from full code to comfort care measures (p = 0.026). When PC specialists were involved, medications to treat anxiety/agitation, dyspnea/pain, and respiratory secretions were utilized more frequently (p < 0.001) and fewer procedures were performed on these critically ill patients within 48 hours of death (p < 0.001).
CONCLUSION: Early involvement of the PC service has an impact on adjusting the treatment paradigm for patients suffering from devastating neurologic injuries. We recommend the creation of a standardized protocol to ensure early PC consultation in the neuro-ICU based on initial patient presentation parameters, imaging characteristics, and prognosis.
The recent supreme court of India judgment on autonomy makes it necessary for all practicing neurologists to appraise themselves of the changing legal framework for End-of-Life decision-making in India. A pathway has been prescribed for advance care planning and medical futility decision-making. This is an evolving landscape and in a diverse country may vary substantially by geography. Living wills and advance medical directives can be prepared by our patients, and we will be required to honor these instruments. Catastrophic brain injury and life-limiting neurologic illness both require us to maintain our commitment to care when cure is no longer possible.
BACKGROUND: The development of palliative care in Peru remains limited, particularly for nononcological services, such as neurology. The goal of this study was to explore attitudes toward and knowledge about palliative and end-of-life care among patients, families, nurses, and doctors in a specialized neurological institute in Lima, Peru.
MATERIALS AND METHODS: We used a mixed methods approach consisting of 78 surveys and 21 qualitative, semistructured interviews that were recorded, transcribed, and analyzed using thematic analysis.
RESULTS: Surveys identified a substantial need for palliative care in the neurological institute (63% of doctors and 77% of nurses reported palliative care needs in >30% of their patients), and for training (82% of doctors and 69% of nurses reported inadequate palliative care education). The key themes emerging from qualitative interviews concerned transparency of communication about prognosis and end-of-life choices in neurological disease. Familiarity with advance directives was limited among both clinicians and families, and participants were divided about whether or not patients should be informed of serious diagnoses and prognoses, and who should inform them. Barriers to transparency in patient-physician communication included (1) expectation of cure; (2) physician's lack of training in communication and end-of-life care; (3) a paternalistic culture; and (4) the nature of neurological diseases.
CONCLUSIONS: Our study highlights opportunities to enhance palliative care and communication education for neurology providers and the public in Peru, a country that currently has no palliative care training program and no legal basis for advance directives.
The goal of shared decision making in the neurocritical care setting is to form plans of care that are consistent with best medical practice and are respectful of the patient's values. Close cooperation and meaningful interaction must be achieved with family members so that the patient's "person can emerge" through discussions. This article highlights several caveats that can subvert this complex process, including the cognitive biases that affect both clinicians and surrogates. Impact, optimism, and gain-framing biases may be particularly relevant when considering patients who are receiving neurocritical care. Practitioners need to be cognizant of the distorting influences of these biases and make attempts to neutralize them. Quality of survival and the nature and degree of deficits are often the dominant concerns after patients experience acute severe brain injuries. Care should be taken to avoid conflating medical facts and value judgments when discussing prognoses.
OBJECTIVE: This study identifies health care providers' perspectives on palliative care at end of life (EOL) in a neuromedicine-intensive care unit (Neuro-ICU) and barriers to providing palliative care.
BACKGROUND: Provider's EOL expertise is crucial in making timely referrals to palliative care as expectation of patient death can be high. Barriers to referral need to be clearly identified so as to engage quality initiatives that improve EOL care delivery.
DESIGN AND PARTICIPANTS: The study is a survey design using a mixed-methods approach. Providers at a large academic medical center, including doctors, nurses, and social workers, completed a quality improvement survey.
MEASUREMENTS: Forty-one providers responded to Likert-type scales assessing their perspectives on palliative care. Their EOL expertise was independently assessed. In addition, barriers to palliative care referral were collected using a checklist and open-ended responses. The latter were reliably content analyzed through a card-sort technique.
RESULTS: Three palliative care perspectives were identified: foundational perspective, comfort-care perspective, and holistic perspective. Regression analysis shows that providers' perspectives are differentially related to their EOL expertise. Frequencies of provider-reported barriers to referring patients to palliative care (e.g., lack of care coordination) were determined.
CONCLUSIONS: Health care providers hold multiple perspectives on what they consider palliative care. Their perspectives are related systematically to different aspects of their EOL expertise. In-house training and quality initiatives could focus on unifying providers' perspectives to create a common language for understanding palliative care. Eliminating individual, intergroup, and organizational barriers is necessary for creating an optimal environment for patients and their families who find themselves, often suddenly, in a Neuro-ICU.
There are unmet palliative care (PC) needs for psychosocial and spiritual distress of neurology patients such as bad stroke as well as in chronic neurodegenerative diseases. As such, psychosocial support to both patients and their caregivers should be enhanced in order to provide comprehensive neuro-PC. The first step in developing this type of support/program was to recognize the main psychosocial care needs of the population. Once these were determined, a program was specifically devised to meet those needs as efficiently and effectively as possible. Several studies have shown the importance and value of psychosocial support for terminally ill patients. Generally, the psychosocial aspects of PC generally receive little or no attention in such studies due to financial limitations and, perhaps more importantly, because PC remains an evolving concept. Recent studies of psychological therapies have yielded relevant results in terms of effectiveness and have shown improvement regarding life meaning and well-being in end-of-life patients. However, there are still gaps in providing psychosocial support to the advanced neurology patients opted for PC.
In neurology, many diseases are still incurable and have a fatal outcome. Palliative care (PC) definitely has a role in neurology. We discuss the screening criteria for PC referral, known as 'triggers' in different neurological diseases. Different clinical settings including in-patient and out-patient are covered. We hope this review can remind clinicians to involve PC in the appropriate patient group. Further clinical studies are expected to validate the triggers and trajectories of various neurological diseases.
Contexte/Introduction: En France, la loi définit et interdit «l'obstination déraisonnable » et encadre la décision qui en découle de limiter, voire d’arrêter les thérapeutiques. Elle accorde aussi au patient le droit de désigner une personne de confiance et de formuler des directives anticipées à cet égard. Peu d’études ont été réalisées sur les décisions de limitation thérapeutique chez les traumatisés crâniens sévères, et encore moins concernant le rôle et l’implication des neurochirurgiens.
Objectifs: Le premier objectif de cette étude était d’évaluer l’observance de la loi n° 2005-370 du 22 avril 2005 relative aux droits des malades et à la fin de vie, qui encadre ces décisions. Le second objectif était d’estimer la fréquence des critères pronostiques et décisionnels utilisés par les neurochirurgiens.
Matériel et méthode : Une enquête de pratique par questionnaire envoyé par courriel aux neurochirurgiens membres de la Société française de neurochirurgie a été menée en France d’avril à juin 2016.
Résultats: Sur 197 neurochirurgiens contactés, 62 ont complété le questionnaire. Les discussions de limitation thérapeutique respectaient le principe de collégialité requis par la loi et incluaient le neurochirurgien référent du patient dans 100 % des cas. La personne de confiance et/ou la famille étaient toujours consultées, mais leur avis était pris en compte de façon variable. Les directives anticipées étaient le plus souvent inexistantes (68 %) [56 % ; 80 %] (27 %) ou inappropriées (27 %) [16 ; 38]. Les paramètres d’évaluation pronostique les plus utilisés étaient les paramètres cliniques, la pression intra-crânienne, la pression de perfusion cérébrale et l’imagerie cérébrale, avec toutefois une grande variabilité interindividuelle dans leur utilisation. Les critères décisionnels principaux étaient la qualité de vie et le handicap prévisibles, puis l’âge.
Conclusions: On observe globalement une bonne observance de la loi par les neurochirurgiens, sauf concernant l’appel au consultant externe. Cette étude confirme l’hétérogénéité dans l’utilisation des critères d’évaluation pronostique et la nécessité de poursuivre la recherche clinique pour parvenir à des pratiques standardisées permettant de limiter au maximum la part de subjectivité dans le processus décisionnel.