Purpose: Prolonged living with chronic illness and disability expands the discussion of end-of-life conversation because of the complex role of intercommunication among patient, family, and healthcare staff. Little is known about such interaction from participants’ different perspectives. This qualitative case study examined end-of-life conversation among patient, family, and staff during long-term hospitalization in a neurological rehabilitation department.
Methods: After the patient’s death, 18 participants responded to in-depth semi-structured interviews: 16 healthcare staff and two family members (the patient’s wife and brother). In addition, we used the wife’s autoethnographic documentation of her experiences during end-of-life conversation.
Results: Thematic analysis produced three themes: (1) The Rehabilitation Department’s Mission – Toward Life or Death? (2) The Staff’s Perception of the Patient; (3) Containing Death: End-of-life Conversation from Both Sides of the Bed. These themes represented participants’ different perspectives in the intercommunication in overt and covert dialogues, which changed over time. Death’s presence–absence was expressed by movement between clinging to life and anticipating death.
Conclusion: The study findings emphasize the importance of practitioners’ training to accept and openly discuss death as an inseparable part of life-long disability, and the implementation of this stance during end-of-life care via sensitive conversations with patients and their families.
IMPLICATIONS FOR REHABILITATION It is vital for rehabilitation professionals to be trained to process and accept end-of-life issues as a natural and inseparable part of the life discourse among people with disabilities and their families. Rehabilitation professionals need to acquire tools to grasp the spoken and unspoken issues related to life and death, and to communicate their impressions and understandings with people with disabilities and their families. Rehabilitation professionals need to encourage an open dialogue when communicating with people with disabilities and their families on processes related to parting and death.
Background: The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.
Methods: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.
Results: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.
Conclusions: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.
PURPOSE OF REVIEW: The purpose of this review is to describe ethical and legal issues that arise in the management of patients with disorders of consciousness ranging from the minimally conscious state to the coma state, as well as brain death.
RECENT FINDINGS: The recent literature highlights dilemmas created by diagnostic and prognostic uncertainties in patients with disorders of consciousness. The discussion also reveals the challenges experienced by the disability community, which includes individuals with severe brain injury who are classified as having a disorder of consciousness. We review current guidelines for management of patients with disorders of consciousness including discussions around diagnosis, prognosis, consideration of neuropalliation, and decisions around life sustaining medical treatment.
SUMMARY: In the setting of uncertainty, this review describes the utility of applying a disability rights perspective and shared decision-making process to approach medical decision-making for patients with disorders of consciousness. We outline approaches to identifying surrogate decision makers, standards for decision-making and decision-making processes, specifically addressing the concept of futility as a less useful framework for making decisions. We also highlight special considerations for research, innovative and controversial care, brain death, organ donation, and child abuse and neglect.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Importance: Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking.
Objective: To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs.
Design, Setting, and Participants: Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019.
Interventions: Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174).
Main Outcomes and Measures: Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat.
Results: A total of 350 patients (mean [SD] age 67  years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers.
Conclusions and Relevance: In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted.
The benefits of a palliative care approach to patients with chronic and progressive neurologic conditions has garnered increasing interest over recent years. In the article by Gao et al, the authors describe their work investigating the effectiveness of a short term integrated palliative care (SIPC) intervention for patients with advanced neurologic disease. Patients with Parkinson disease, multiple sclerosis, multiple system atrophy, progressive supranuclear palsy, and amyotrophic lateral sclerosis were recruited along with their caregivers to participate in a study across 7 hospitals in the United Kingdom. Patients were randomized to receive SIPC vs standard care for 12 weeks followed by the standard care model. A diverse set of outcome measures was studied including changes in physical symptoms as measured by the Integrated Palliative Care Outcome Scale for neurologic conditions (IPOS Neuro-S8), psychological stress, caregiver burden, costs, and quality of life.
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The number of countries and states that have legalized assistance in dying under various names (Medical Assistance in Dying, Death with Dignity, etc.) has continued to grow in recent years, allowing this option for more patients. Most of these laws include restrictions for eligibility based on a terminal diagnosis and estimated prognosis, as well as asking certifying providers to attest to the cognitive and psychiatric competence and capacity of patients requesting access. Some laws also require that patients must be able to 'self-administer' the regimen, though details vary. Such determinations can be vague and difficult to clearly apply to patients with neurologic conditions and primary or metastatic brain tumors. There is currently a lack of rigorous studies guiding providers on how to apply these important legal criteria to this special and common patient population. As access to legal assistance in dying expands, more research is needed on how to ethically apply the laws and guide patients, families and providers through the process.
Bereavement is associated with many negative behavioural, psychological and physiological consequences and leads to an increased risk of mortality and morbidity. However, studies specifically examining neuroendocrine mechanisms of grief and bereavement have yet to be reviewed. This systematic review is a synthesis of the latest evidence in this field and aims to draw conclusions about the implications of neurobiological findings on the development of new interventions. PRISMA guidelines for systematic reviews were used to search for articles assessing neuroendocrine correlates of grief. Findings were qualitatively summarised. The National Heart, Lung, and Blood Institute Study Assessment Tool was used to assess the quality of the included studies. Out of 460 papers, 20 met the inclusion criteria. However, most were of fair quality only. As a neuroendocrine marker, the majority of the studies reported cortisol as the outcome measure and found elevated mean cortisol levels, flattened diurnal cortisol slopes and higher morning cortisol in bereaved subjects. Cortisol alterations were moderated by individual differences such as emotional reaction to grief, depressive symptoms, grief severity, closeness to the deceased and age or gender. Research on neuroendocrine mechanisms of grief is still in its early stages regarding grief measures and the use and timing of neuroendocrine assessments. Most of the studies focus on cortisol as outcome, and only limited data exist on other biomarkers such as oxytocin. Future research might consider assessing a broader range of neuroendocrine markers and use longitudinal designs with a focus on the psychobiological reactions to loss. Based on this, individually tailored psychosocial interventions, possibly in the palliative care context, might be developed to prevent prolonged grief disorder.
BACKGROUND: People living with long-term neurological conditions (LTNC) often require palliative care. Rehabilitation medicine specialists often coordinate the long-term care of these patients.
OBJECTIVE: The aim of the present review was to undertake systematic literature searches to identify the evidence on palliative care for people with LTNC to guide rehabilitation medicine specialists caring for these patients in the UK.
METHODS: We searched for evidence for (1) discussion of end of life, (2) planning for end-of-life care, (3) brief specialist palliative care interventions, (4) support for family and carers, (5) training of rehabilitation medicine specialists in palliative care, and (6) commissioning of services. The databases searched were MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, NHS Economic Evaluation Database and Health Technology Assessment Database. Evidence was assimilated using a simplified version of the Grading of Recommendations Assessment, Development and Evaluation method.
RESULTS: We identified 2961 records through database searching for neurological conditions and 1261 additional records through database searches for specific symptoms. We removed duplicate records and conference presentations. We screened 3234 titles and identified 330 potentially relevant abstracts. After reading the abstracts we selected 34 studies for inclusion in the evidence synthesis.
CONCLUSIONS: From the evidence reviewed we would like to recommend that we move forward by establishing a closer working relationship with specialists in palliative care and rehabilitation medicine and explore the implications for cross-specialty training.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Palliative care (PC) supports patient with serious illnesses and can help patients with meningioma through the phases of their clinical trajectory, from initial diagnosis through the last hours of life. The PC team implements a multimodal transdisciplinary approach to address physical, psychosocial, and spiritual suffering with patients and their families, while also fostering constructive communication with the many health care providers involved. To achieve these goals the PC core team is comprised of physicians, nurse practitioners, physician assistants, nurses, social workers, and spiritual care providers who are trained to take care of patients with serious illnesses and to provide support to their families. The PC intervention can be instituted concurrently with all other treatments including those with a curative intent, and symptom management can be implemented while at the same time addressing reversible causes of distress. PC is practiced in acute care centers and long-term care facilities, usually by a consulting team, but other settings include outpatient clinics and home. When patients experience recurrence of their tumor and their life expectancy is shortened to 6 months or less, a hospice can provide the same transdisciplinary support by focusing on quality of life and symptom management for the patient while assisting the family through the clinical course and providing professional bereavement services after the patient's death.
BACKGROUND: Do-not-resuscitate (DNR) orders are commonly used after intracerebral hemorrhage (ICH) and have been shown to be a predictor of mortality independent of disease severity. We determined the frequency of early DNR orders in ICH patients and whether a previously reported association with increased mortality still exists.
METHODS: We performed a retrospective analysis of patients discharged from non-federal California hospitals with a primary diagnosis of ICH from January 2013 through December 2014. Characteristics included hospital ICH volume and type and whether DNR order was placed within 24 h of admission (early DNR order). The risk of in-hospital mortality was evaluated both on the individual and hospital level using multivariable analyses. A case mix-adjusted hospital DNR index was calculated for each hospital by comparing the actual number of DNR cases with the expected number of DNR cases from a multivariate model.
RESULTS: A total of 9,958 patients were treated in 180 hospitals. Early DNR orders were placed in 20.1% of patients and 54.2% of these patients died during their hospitalization compared to 16.0% of patients without an early DNR order. For every 10% increase in a hospital's utilization of early DNR orders, there was a corresponding 26% increase in the likelihood of in-hospital mortality. Patients treated in hospitals within the highest quartile of adjusted DNR use had a higher relative risk of death compared to the lowest quartile (RR 3.9 vs 5.2) though the trend across quartiles was not statistically significant.
CONCLUSIONS: The use of early DNR orders for ICH continues to be a strong predictor of in-hospital mortality. However, patients treated at hospitals with an overall high or low use of early DNR had similar relative risks of death whether or not there was an early DNR order, suggesting that such orders may not be a proxy for less aggressive care as seen previously.
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.