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14 pages, 475 KiB

Open AccessArticle

Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions

by Vivek C. Velaga, Angus Cook, Kirsten Auret, Tom Jenkins, Geoff Thomas and Samar M. Aoun

Brain Sci. 2023, 13(6), 920; https://doi.org/10.3390/brainsci13060920 - 7 Jun 2023

Cited by 2 | Viewed by 2372

Abstract

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service [...] Read more.

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the “Compassionate Communities Connectors” model of care. Further considerations include advocacy for policy changes, fostering partnerships and developing indicators for evaluating the impact of the proposed models of care. The end result is not only better care but substantial savings for the health system. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

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11 pages, 807 KiB

Open AccessArticle

Burdens and Resources of Staff of a Specialized Ward for Neuropalliative Care: A Cross-Sectional Survey

by Sarah Herwest, Stella Linnea Kuhlmann, Anna-Christin Willert, Christoph Johannes Ploner and Alexander Bernhard Kowski

Brain Sci. 2022, 12(12), 1697; https://doi.org/10.3390/brainsci12121697 - 10 Dec 2022

Viewed by 1713

Abstract

Palliative care adds significant burdens to healthcare workers. In neuropalliative care (NPC), additional challenges include patient symptom burdens, such as impairments in mobility, cognition, and communication. After one year of operating the first NPC ward in Germany, we assessed burdens, resources, and the [...] Read more.

Palliative care adds significant burdens to healthcare workers. In neuropalliative care (NPC), additional challenges include patient symptom burdens, such as impairments in mobility, cognition, and communication. After one year of operating the first NPC ward in Germany, we assessed burdens, resources, and the number of deaths perceived as stressful. NPC physicians and nursing staff were compared with the team of other neurological wards, including a stroke unit. The assessment took place between March 2022 and May 2022. All 64 team members were contacted; the responder rate was 81%. The perceived burden was high but did not differ between groups. There were no differences between the NPC- and the neurological wards in the number of deaths perceived as stressful. However, rather than the number of deaths, the circumstances of dying influence the perceived distress. The resources mentioned were similar between groups, with the team and private life being most important. Communication difficulties were frequently cited as stressful, whereas successful communication was identified as a resource. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

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14 pages, 625 KiB

Open AccessArticle

Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis

by Sara Alquati, Luca Ghirotto, Ludovica De Panfilis, Cristina Autelitano, Elisabetta Bertocchi, Giovanna Artioli, Francesca Sireci, Silvia Tanzi and Simona Sacchi

Brain Sci. 2022, 12(12), 1623; https://doi.org/10.3390/brainsci12121623 - 26 Nov 2022

Cited by 3 | Viewed by 1997

Abstract

A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. [...] Read more.

A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. We designed the study according to the constructivist Grounded Theory method, collecting data through open-ended, semi-structured interviews, employing theoretical sampling and constant comparison, and performing conceptual coding as data analysis. By naming the core category “off-beat interfacing”, we were able to show how the demands of the professionals concerned did not correspond to the ability of people with ALS and their proxies to process information, deal with requests, and be at ease in making decisions at the beginning of the shared care pathway. Three categories were generated: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. The network of services must be organized according to guidelines, but must also contemplate a patient-family-centered approach that permits more personalized assistance. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

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9 pages, 233 KiB

Open AccessArticle

‘We Have Guidelines, but We Can Also Be Artists’: Neurologists Discuss Prognostic Uncertainty, Cognitive Biases, and Scoring Tools

by Luca Tolsa, Laura Jones, Patrik Michel, Gian Domenico Borasio, Ralf J. Jox and Rachel Rutz Voumard

Brain Sci. 2022, 12(11), 1591; https://doi.org/10.3390/brainsci12111591 - 21 Nov 2022

Cited by 4 | Viewed by 1860

Abstract

Introduction: Ischemic stroke is a leading cause of disability and mortality worldwide. As acute stroke patients often lose decision-making capacity, acute management is fraught with complicated decisions regarding life-sustaining treatment (LST). We aimed to explore (1) the perspectives and experiences of clinicians regarding [...] Read more.

Introduction: Ischemic stroke is a leading cause of disability and mortality worldwide. As acute stroke patients often lose decision-making capacity, acute management is fraught with complicated decisions regarding life-sustaining treatment (LST). We aimed to explore (1) the perspectives and experiences of clinicians regarding the use of predictive scores for LST decision making in severe acute stroke, and (2) clinicians’ awareness of their own cognitive biases in this context. Methods: Four focus groups (FGs) were conducted with 21 physicians (13 residents and 8 attending physicians); two FGs in a university hospital and two in a regional hospital in French-speaking Switzerland. Discussions were audio-recorded and transcribed verbatim. Transcripts were analyzed thematically. Two of the four transcripts were double coded to establish coding framework consistency. Results: Participants reported that predictive tools were not routinely used after severe stroke, although most knew about such scores. Scores were reported as being useful in quantifying prognosis, advancing scientific evidence, and minimizing potential biases in decisions. Their use is, however, limited by the following barriers: perception of inaccuracy, general disbelief in scoring, fear of self-fulfilling prophecy, and preference for clinical judgement. Emotional and cognitive biases were common. Emotional biases distort clinicians’ knowledge and are notably: bias of personal values, negative experience, and cultural bias. Cognitive biases, such as availability, confirmation, and anchoring biases, that produce systematic deviations from rational thinking, were also identified. Conclusions: The results highlight opportunities to improve decision making in severe stroke through the promotion of predictive tools, strategies for communicating prognostic uncertainty, and minimizing cognitive biases among clinicians, in order to promote goal-concordant care. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

6 pages, 234 KiB

Open AccessCommunication

The First Neuropalliative Care Unit in Germany—Characteristics of Patients

by Anna-Christin Willert, Johanna Meyerling, Christoph J. Ploner and Alexander B. Kowski

Brain Sci. 2022, 12(11), 1498; https://doi.org/10.3390/brainsci12111498 - 4 Nov 2022

Cited by 2 | Viewed by 1508

Abstract

A unique structure of care for neurological inpatients with significant palliative care (PC) needs was established in the Department of Neurology at the Charité—Universitätsmedizin Berlin in 2021: a specialized neuropalliative care (NPC) unit. After one year, we provide an overview of the concept [...] Read more.

A unique structure of care for neurological inpatients with significant palliative care (PC) needs was established in the Department of Neurology at the Charité—Universitätsmedizin Berlin in 2021: a specialized neuropalliative care (NPC) unit. After one year, we provide an overview of the concept and the patients’ characteristics. Methods: We retrospectively analyzed the characteristics of patients treated in our NPC unit between February 2021–February 2022. Data were extracted from medical records and PC assessment including diagnosis, mode of admission and discharge, length of stay, and palliative symptoms. Data are presented as averages with a 95% confidence interval [lower limit; upper limit] or percentage (absolute number). Results: We included 143 patients (52% (75) female, 67.9 years [65.6; 70.2]). Patients were admitted from general wards (48%; 68), their homes (22%; 32), intensive care units (16%; 23) or emergency departments (14%; 20). The main diagnoses were tumors of the nervous system (39%; 56), neurodegenerative diseases (30%; 43), neurologic complications (13%; 19) and cerebrovascular diseases (12%; 17). Complaints most frequently rated as severely to overwhelmingly burdensome were motor- or fatigue-associated problems, problems communicating, dysphagia and pain. The average length of stay was 13.7 days [12.2; 15.2]. Forty-five percent (64) of patients were discharged without further PC, 17% (24) were referred to a hospice and 13% (18) were discharged with outpatient PC. Five percent (7) were referred to neurorehabilitation and 21% (30) of patients died. Conclusions: Our NPC unit is a new model of care for neurological patients with substantial PC needs especially within the structures of a highly specialized and individualized medicine. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

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7 pages, 216 KiB

Open AccessOpinion

A Narrative Review of Problems in Learning and Practicing Palliative Care in Neurology Clinics in Japan and Proposed Solutions

by Takeshi Oki

Brain Sci. 2022, 12(12), 1707; https://doi.org/10.3390/brainsci12121707 - 12 Dec 2022

Viewed by 1178

Abstract

As the understanding of the role of palliative care in neurology increases, there is the need to ensure that these developments include not only care at home and in hospitals but also in clinics. There are no reports on palliative care from neurology [...] Read more.

As the understanding of the role of palliative care in neurology increases, there is the need to ensure that these developments include not only care at home and in hospitals but also in clinics. There are no reports on palliative care from neurology clinics in Japan, and this paper considers the problems and proposed solutions for improving palliative care provided at neurology clinics in Japan. In Japan, physicians in neurology clinics are extremely busy both during and after office hours with medical treatment and the preparation of various documents and are unable to conduct case conferences. Moreover, the education system for palliative care, especially for lifelong education, is not sufficient, and multidisciplinary cooperation is difficult due to the lack of specialists and their scattered locations. To improve the care provided for patients and their families, general palliative care should be included in the health insurance system with incentives and recognition, and mandatory lifelong education should be established so that all neurologists can provide palliative care. These proposals may be appropriate for other countries as palliative care in neurology is established. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

15 pages, 1346 KiB

Open AccessSystematic Review

The Use of Mechanical Ventilation Support at the End of Life in Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A Scoping Review

by Eleanor Wilson, Jeong-Su Lee, David Wenzel and Christina Faull

Brain Sci. 2022, 12(9), 1162; https://doi.org/10.3390/brainsci12091162 - 30 Aug 2022

Cited by 6 | Viewed by 3198

Abstract

There has been an increase in the use of mechanical ventilation (MV) in motor neurone disease (MND) to alleviate symptoms related to hypoventilation. Little is known about its use at the end of life, and the withdrawal of MV is a challenging topic. [...] Read more.

There has been an increase in the use of mechanical ventilation (MV) in motor neurone disease (MND) to alleviate symptoms related to hypoventilation. Little is known about its use at the end of life, and the withdrawal of MV is a challenging topic. A scoping review was conducted to map the existing evidence of ventilation use at the end of life in MND. The Joanna Briggs Institute methodological framework was used, and a total of 31 documents were included in the data extraction. Boarder themes around place, planning, cause and comments on death were identified. Our findings show that the focus of the literature has been on the process of the withdrawal of ventilation, creating the subthemes of timing and reason for withdrawal, along with ethical, emotional, and practical issues, medications used and the time until death. There is a foundation of evidence to guide the process and discuss the ethical and emotional issues of withdrawing ventilation. However, there remains limited evidence from patient and family member perspectives. Importantly, there is almost no evidence exploring dying with ventilation in place, the active or passive decisions around this process, how the interface might impact the dying process, or what families think about this. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

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12 pages, 1069 KiB

Open AccessStudy Protocol

Pharmacological Treatment of Pain and Agitation in Severe Dementia and Responsiveness to Change of the Italian Mobilization–Observation–Behavior–Intensity–Dementia (I-MOBID2) Pain Scale: Study Protocol

by Damiana Scuteri, Marianna Contrada, Teresa Loria, Paolo Tonin, Giorgio Sandrini, Stefano Tamburin, Pierluigi Nicotera, Giacinto Bagetta and Maria Tiziana Corasaniti

Brain Sci. 2022, 12(5), 573; https://doi.org/10.3390/brainsci12050573 - 29 Apr 2022

Cited by 5 | Viewed by 2894

Abstract

Up to 80% of Alzheimer’s disease (AD) patients in nursing homes experiences chronic pain and 97% develops fluctuant neuropsychiatric symptoms (NPS). Agitation, associated with unrelieved pain, is managed through antipsychotics and may increase the risk of death. Evidence is accumulating in favor of [...] Read more.

Up to 80% of Alzheimer’s disease (AD) patients in nursing homes experiences chronic pain and 97% develops fluctuant neuropsychiatric symptoms (NPS). Agitation, associated with unrelieved pain, is managed through antipsychotics and may increase the risk of death. Evidence is accumulating in favor of analgesia for a safer, effective therapy of agitation. The Italian version of Mobilization–Observation–Behavior–Intensity–Dementia, I-MOBID2, recently validated in the Italian setting, shows: good scale content validity index (0.89), high construct validity (Spearman rank-order correlation Rho = 0.748), reliable internal consistency (Cronbach’s α coefficient = 0.751), good-excellent inter-rater (intraclass correlation coefficient, ICC = 0.778) and test-retest (ICC = 0.902) reliability, and good inter-rater and test-retest agreement (Cohen’s K = 0.744) with 5.8 min completion time. This study intends to identify the responsiveness of the I-MOBID2 based on COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) recommendations, assessing the a priori hypotheses of (1) the efficacy of painkillers administered to severe AD patients after proper pain assessment and (2) the effect of reduction of the Cohen-Mansfield Agitation Inventory (CMAI) score and of agitation rescue medications. This protocol is approved by Calabria Region Ethics Committee protocol No. 31/2017 and follows the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) guidelines. Full article

(This article belongs to the Special Issue Developments in Palliative Care in Neurology)

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