In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we present a new weekly series where practitioners and researchers will share their experiences in supporting people affected by neurological disease.
Today’s Guest Writer is Barry R Ashpole, a Communications Consultant, Educator and Media Specialist from Ontario, Canada, who contributes a bi-annual post for the blog. This contribution focuses on the evolving specialty that is neuropalliative care with summaries of a representative sample of journal articles on the subject published during the past year or so. Included are articles on Parkinson’s disease, Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Motor Neurone disease, Huntington’s disease, Dementia, Epilepsy and Neuro-ICU (neurosciences intensive care unit). There is a short selection of articles on neuropalliative care in the context of the COVID-19 pandemic, from the family caregivers’ perspective, and advance care planning (including advance directives and goals-of-care).
New hope for advancing neuropalliative care
THE LANCET, 2021;20(6):49. People with neurological disorders can have substantial palliative care (PC) needs, which differ from those of patients with other life-threatening conditions but are often overlooked. The International Neuropalliative Care Society (INPCS) has been launched to promote the integration of PC within neurological services. A growing body of evidence support these views. INPCS plans to build an interdisciplinary professional network, develop educational tools, help disseminate good practices, and galvanise research to fill knowledge gaps. By working in partnership with other organisations with long expertise in improving practices, such as European Academy of Neurology,1 INPCS has the opportunity to help spur a rapid change. Full text.
- ‘Access and attitudes toward palliative care among movement disorders clinicians,’ Movement Disorders, published online 25 August 2021. Abstract.
Neuropalliative care in the inpatient setting
SEMINARS IN NEUROLOGY | Online – 7 October 2021 – The palliative care (PC) needs of inpatients with neurologic illness are varied, depending on diagnosis, acuity of illness, available treatment options, prognosis, and goals-of-care (GoC). In the acute setting, PC should be integrated with lifesaving treatments using a framework of determining GoC, thoughtfully prognosticating, and engaging in shared decision-making. Because prognostic uncertainty characterizes much of neurology, inpatient neurologists must develop communication strategies that account for uncertainty while supporting shared decision-making and allowing patients and families to preserve hope. In this article, the authors illustrate the approach to PC in inpatient neurology. Abstract.
Next steps in palliative care education for neurology residents
NEUROLOGY | Online – 5 October 2021 – Growing recommendations in the field recommend neurologists have primary skills in palliative medicine that will allow them to manage symptoms and discuss end-of-life (EoL) decisions with patients and families. Formal palliative care training in neurology residencies is very limited. The authors describe a national survey of neurology residents where they assess both the quantity and quality of the teaching they receive in EoL care as compared to a common and an uncommon neurologic condition. Based on the gaps identified, as well as previous studies and recommendations in neuropalliative care, the authors provide nine recommendations to help neurology residency programs improve their teaching of primary neuropalliative care skills. Abstract.
Integration of palliative care in Parkinson’s disease management
CURRENT MEDICAL RESEARCH & OPINION | Online – 30 July 2021 –Analysis of various existing literature has demonstrated promise in timely palliative care (PC) integration for patients with Parkinson’s disease (PD), which has shown improvement in the quality of life of PD patients. Understanding the connections between the themes surrounding PC is crucial for successful integration in PD management. It is determined that integration of PC in patients with PD helps to not only improve patients’ experiences but also their caregiver’s experiences throughout the disease trajectory. Further research should be conducted to address how PC will focus on alleviating caregiver burden and establish specific prognostication tools for PD patients. Abstract.
‘Education on palliative care for Parkinson patients: Development of the “Best care for people with late-stage Parkinson’s disease” curriculum toolkit’, BMC Medical Education, published online 25 October 2021 Full text.
‘End of life neuropsychological impairments and psychological care of persons with advanced Parkinsonism’, American Journal of Hospice & Palliative Medicine, published online 4 October 2021. Abstract (with references).
‘Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: A systematic review,’ Journal of Neurology, Neurosurgery & Psychiatry, 2021;92(6):629-636. Full text.
Amyotrophic lateral sclerosis
Communication about end of life for patients living with amyotrophic lateral sclerosis: A scoping review of the empirical evidence
FRONTIERS IN NEUROLOGY | Online – 24 August 2021 – This review demonstrates a small increase in empirical articles discussing end-of-life (EoL) communication with people living with amyotrophic lateral sclerosis (ALS). Communication about the EoL remains a peripheral part of more broadly focused investigations. Generic communication skills, such as expressing empathy, were important; however, information substance and sufficiency was central to high quality, effective health communication. Recommendations for clinical communication focused on communication processes, style, and content, but lacked systematic guidance. Practice recommendations for the management of ALS encourage clinicians to discuss life-sustaining therapies and EoL with ALS patients. Full text.
‘The role of specialty palliative care for amyotrophic lateral sclerosis,’ American Journal of Hospice & Palliative Medicine, published online 28 September 2021. Abstract (with references).
‘Top ten tips palliative care clinicians should know about amyotrophic lateral sclerosis,’ Journal of Palliative Medicine, 2020;23(6):842-847. Abstract.
European Academy of Neurology guideline on palliative care of people with severe, progressive multiple sclerosis
EUROPEAN JOURNAL OF NEUROLOGY, 2020;27(8):1510-1529. Recognizing significant variation in the palliative care (PC) of patients with severe multiple sclerosis (MS) across Europe, the Academy assembled a task force to summarize the existing evidence and develop a clinical practice guideline. The provision of home-based PC (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of PC and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs. Full text.
Motor neurone disease
Why and how the work of motor neurone disease associations matters before and during bereavement: A consumer perspective
PALLIATIVE CARE & SOCIAL PRACTICE, 2021;15(1). Motor neurone disease associations have great potential to play a more effective role as an enabler in the public health approach to end-of-life (EoL) model of care and to be more relevant to the communities they serve at the national and international levels. Currently, this potential is not achieved in Australia because of the lack of consistency of training and delivery of services, primarily due to a lack of research investment in health and social care and service improvement, as distinct from basic science and clinical research. A national approach is needed encompassing uniformity, continuum of care incorporating EoL care and bereavement support, consumer feedback/representation in designing services. Full text.
‘Integrated home-based palliative care in motor neuron disease: A case report from low- middle-income country,’ Journal of Social Work in End-of-Life & Palliative Care, published online, 21 June 2021. Abstract.
An Australian neuro-palliative perspective on Huntington’s disease: A case report
BMC PALLIATIVE CARE | Online – 1 April 2021 – To the authors’ knowledge, they are the only dedicated Neuro-Palliative Care Service in Australia. Patients with Huntington’s disease (HD) are reluctant to be admitted to palliative care (PC) services. Similarly, PC services, including community-based and inpatient consultation and hospice services, are reluctant to admit them. Patient reluctance can stem from beliefs that PC is focused solely on death and dying and the age discrepancy between HD patients, who are generally much younger, and the majority of other patients referred to PC. Service reluctance is often due to perceptions, by staff of people with HD, as challenging patients, with difficult to manage behaviours, high psychiatric comorbidity, and prolonged lengths of admission. Full text.
‘Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: A qualitative study,’ BMC Palliative Care, published online 12 January 2021. Full text.
Palliative care interventions in advanced dementia
COCHRANE DATABASE OF SYSTEMATIC REVIEWS | Online – 28 September 2021 – The evidence on palliative care interventions in advanced dementia is limited in quantity and certainty. When compared to usual care, changes to the organisation and delivery of care for people with advanced dementia may lead to improvements in comfort in dying, but the evidence for this was of very low certainty. Advance care planning interventions, compared to usual care, probably increase the documentation of advance directives and the occurrence of discussions about goals-of-care (GoC), and may also increase concordance with GoC. The uncertainty in the evidence across all outcomes in both comparisons is mainly driven by imprecision of effect estimates and risk of bias in the included studies. Abstract.
Defining end of life in dementia: A systematic review
PALLIATIVE MEDICINE | Online – 17 June 2021 – A definition for end of life (EoL) in dementia remains poorly defined, and unrepresentative of the general population with dementia. Research investigating palliative care that only includes cognitive or functional decline, may fail to recognise other significant signs and unmet needs relevant to dementia and EoL. The authors suggest researchers and healthcare professionals in dementia care accept the complex nature of EoL in dementia between and within individuals. They advocate for a transition beyond defining EoL by disease-stage and to consider signs beyond cognitive and functional decline. Identifying the appropriate signs and needs of individuals at the EoL with dementia will require further research. Abstract (with references).
‘Exploring costs, cost components, and associated factors among people with dementia approaching the end of life: A systematic review,’ Alzheimer’s & Dementia: Translational Research & Clinical Interventions, published online 14 September 2021. Full text.
‘Quality indicators for dementia and older people nearing the end of life: A systematic review,’ Journal of the American Geriatrics Society, published online 31 July 2021. Full text.
‘Palliative care in advanced dementia: Comparison of strategies in three countries,’ Geriatrics, 2021;6(2):44. Full text.
‘Palliative and end-of-life care for people living with dementia in rural areas: A scoping review,’ Plos One, published online 14 January 2021. Full text.
In Long-Term Care, Nursing Homes, Residential Care:
‘“A good death but there was all this tension around”: Perspectives of residential managers on the experience of delivering end-of-life care for people living with dementia,’ BMC Geriatrics, published online 12 May 2021. Full text.
‘End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes,’ BMC Nursing, published online 20 March 2021. Full text.
Would people living with epilepsy benefit from palliative care?
EPILEPSY & BEHAVIOUR, 2021;114:107618. There has been scant attention paid to the relevance of palliative care (PC) principles in epilepsy or the potential for PC approaches to improve outcomes for persons living with epilepsy and their families. PC may provide a useful framework for addressing the many sources of suffering, facing persons living with epilepsy, for engaging patients and families in challenging conversations, and to focus efforts to improve models of care for this population. The authors review areas of significant unmet needs where a PC approach may improve patient and family-centered outcomes, including complex symptom management, goals-of-care, advance care planning, psychosocial support for patient and family and spiritual well-being. Abstract (with references).
Palliative care services in the Neuro-ICU: Opportunities and persisting barriers
AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 11 January 2021 – This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed Neuro-ICU at a large academic medical center. Across services, 146 expired patients were never referred to palliative care (PC) or hospice services. Despite benefits of PC and an in-hospital hospice opportunity, the authors identified lack of referral, and particularly delays in referral to services as significant barriers. Their findings highlight these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for end-of-life services in this setting. Abstract (with references).
Top ten tips palliative care clinicians should know about strokes
JOURNAL OF PALLIATIVE MEDICINE | Online – 26 October 2021 – Stroke is a common cause of long-term disability and death, which leaves many patients with significant and unique palliative care (PC) needs. Shared decision-making for patients with stroke poses distinct challenges due to the sudden nature of stroke, the uncertainty inherent in prognostication around recovery, and the common necessity of relying on surrogates for decision-making. Patients with stroke suffer from frequently underrecognized symptoms, which PC clinicians should feel comfortable identifying and treating. This article provides 10 tips for palliative clinicians to increase their knowledge and comfort in caring for this important population. Abstract.
Additional Reading Specific to the COVID-19 Pandemic:
‘Experience of community neurologists providing care for patients with neurodegenerative illness during the COVID-19 pandemic,’ Neurology, 2021;97(10):e988-e995. Abstract.
‘Improving end-of-life care for people with dementia in long-term care homes during the COVID-19 pandemic and beyond,’ Canadian Geriatrics Journal, published online 1 September 2021. Full text.
‘Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives,’ Palliative Medicine, published online 1 July 2021. Full text.
‘The impact of COVID-19 on palliative care for people with Parkinson’s and response to future pandemics,’ Expert Review of Neurotherapeutics, 2021;21(6):615-623. Introduction.
From the Family Caregiver Perspectives
‘“Walking a tightrope”: A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis,’ Health & Social Care in the Community, published online 31 October 2021. Full text.
‘Bereavement and support experiences of informal caregivers of persons with amyotrophic lateral sclerosis: A qualitative study,’ Journal of Social Work in End-of-Life & Palliative Care, published online 3 October 2021. Abstract.
‘“No one can tell me how Parkinson’s disease will unfold”: A mixed methods case study on palliative care for people with Parkinson’s disease and their family caregivers,’ Journal of Parkinson’s Disease, published online 15 September 2021. Abstract.
‘Traumatised, angry, abandoned, but some empowered: A national survey of experiences of family caregivers bereaved by motor neurone disease,’ Palliative Care & Social Practice, published online 30 August 2021. Full text.
‘Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers,’ Patient Education & Counseling, published online 23 July 2021. Full text.
‘Evaluation of the caring ahead: Preparing for end of life with dementia questionnaire,’ Journal of Post-Acute & Long-term Care Medicine, published online 21 July 2021. Abstract (with references).
‘A decision aid to support family carers of people living with dementia towards the end-of-life: Co-production process, outcome and reflections,’ Health Expectations, published online 19 July 2021. Full text.
Advance Care Planning, Advance Directives, Goals-of-Care
‘Advance care plans and the potentially conflicting interests of bedside patient agents: A thematic analysis,’ Journal of Multidisciplinary Healthcare, 2021;14:2087-2100. Full text.
‘“Imagine you have ALS”: Death education to prepare for advance treatment directives,’ Behavioural Sciences, 2021;11(1):6. Full text.
‘Advance care planning interventions for older people with early-stage dementia: A scoping review,’ Nordic Journal of Nursing Research, 2021;9(5):608. Full text.
Links and resources
- Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of articles and reports in the fields of health care, social services, and ethics and law focused on end-of-life care. You can access Media Watch on the International Palliative Care Resources Center website.
- Follow Barry on Twitter @Barry R Ashpole
- EAPC Neurology Reference Group (includes links to several useful publications and projects).
- EAPC Neurology Reference Group Webinar – date to be announced soon. Follow us @EAPCvzw and the blog for latest information.
- Follow the Palliative Care and Neurology series on the EAPC blog. Next week’s guest writer will be Dr Simone Veronese, a palliative care physician from Italy who has a deep interest in neurology.