End-of-life management in patients with amyotrophic lateral sclerosis

doi:10.1016/S1474-4422(14)70221-2

The Lancet Neurology

Volume 14, Issue 4, April 2015, Pages 435-442

https://doi.org/10.1016/S1474-4422(14)70221-2 Get rights and content

Summary

Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear. Patients' perspectives regarding end-of-life interventions and use of technologies might differ from those of the health professionals involved in their care, and health-care professionals should recognise this and respect the patient's autonomy. Advance care directives can preserve autonomy, but their legal validity and use varies between countries. Clinical management of the end of life should aim to maximise quality of life of both the patient and caregiver and, when possible, incorporate appropriate palliation of distressing physical, psychosocial, and existential distress. Training of health-care professionals should include the development of communication skills that help to sensitively manage the inevitability of death. The emotional burden for health-care professionals caring for people with terminal neurological disease should be recognised, with structures and procedures developed to address compassion, fatigue, and the moral and ethical challenges related to providing end-of-life care.

Introduction

Amyotrophic lateral sclerosis (ALS) is a degenerative disorder characterised mainly by involvement of upper and lower motor neurons,¹ although more extensive extra-motor involvement including cognitive and behavioural changes is also recognised as a feature of the disorder. Although the pathogenesis and course of the disease are heterogeneous, the disorder is invariably and inexorably progressive, and up to 70% of those affected die within 3 years from symptom onset.² In view of the incurable nature of the disorder, a palliative approach, focused on symptom management and preservation of quality of life is recommended from the time of diagnosis by consensus opinion in the specialties of both ALS and palliative care.³ As the disorder progresses, open communication and clear identification of important issues relating to end-of-life decision making are needed. We aim to identify and review the most important topics in the scientific literature in the context of management of end of life in ALS and related neurodegenerative disorders such as frontotemporal dementia.

Section snippets

Best practice at the end of life

In view of the absence of effective treatment options for patients with ALS, the aim of care is to maximise quality of life from the time of diagnosis through to the end of life. In this context, a palliative approach considers the physical, psychological, social, and spiritual aspects of having the illness, viewed holistically and with involvement of a multidisciplinary team. Optimum palliative management needs a strategy that incorporates hospital-based multidisciplinary care with

End-of-life discussions and decision making

Discussions and decision making about end of life generally cover preferences for symptom management, and in the late stages, nutritional and respiratory support, including gastrostomy insertion, non-invasive ventilation, and invasive mechanical ventilation.¹⁷ Such practices are often delayed¹⁸ or triggered in a crisis situation by the occurrence of life-threatening complications. A US-based ALS peer workgroup identified several triggers for discussion of end-of-life issues including the

Interventions and technologies

Although riluzole provides a survival benefit of roughly 3 months in ALS,⁴⁷ non-pharmacological interventions including ventilation and gastrostomy can improve both survival and quality of life, respectively.48, 49 Many findings support the use of non-invasive ventilation in the management of respiratory disturbances in ALS,50, 51 with established guidelines for timing of initiation.⁵² Commencement of non-invasive ventilation presents an opportunity to broach end-of-life decision making.53, 54

Dying and death from ALS

Most people with ALS die from respiratory failure within 3 to 5 years of symptom onset.² Other causes of death include cardiac arrest, coronary disease, asphyxia, and pulmonary embolism.77, 78 Several indicators of the end-of-life phase in patients with neurological disorders have been identified including rapid physical decline, infection in combination with cognitive impairment, and risk of aspiration.⁷⁹ Psychosocial distress is common and emotional symptoms might include depressed mood,

Assisted death in ALS

Life-limiting options considered by some patients include the voluntary cessation of food and water, physician-assisted suicide, and euthanasia. Several factors are associated with assisted death, including patient autonomy and control,21, 86 religious beliefs,86, 87, 88 the perception of being a burden,⁸⁷ feelings of hopelessness,86, 87, 88, 89, 90 and depression.⁸⁷ Patients to whom religion and spiritual belief is important are less likely to choose euthanasia or physician-assisted suicide.⁸⁷

Conclusions

Medical education generally focuses on the preservation of life and defying death. Health-care professionals who care for patients with ALS need to recognise the inevitability of death, while ensuring that their patients are appropriately prepared and supported, that patient autonomy is respected, and that the symptoms are adequately managed. To achieve this ideal, a shift is underway in medical training, with greater emphasis on both communication skills and palliative approaches. At

Search strategy and selection criteria

We identified topics specific to end-of-life care through an initial extensive literature search, and through discussions with health professionals in the specialties of neurology and palliative care in the Irish National Centre for ALS, who provide end-of-life care to patients with amyotrophic lateral sclerosis. We searched Medline and PubMed from Jan 1, 1980, to May 31, 2014, with the following keywords: “motor neuron disease”, “amyotrophic lateral sclerosis”, “end of life”, “dying”, “death”,

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Palliative Care in Amyotrophic Lateral Sclerosis
2023, Journal of Pain and Symptom Management
Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease of the motor neurons. Given the evolutive characteristics of this disease, palliative care principles should be a foundation of ALS care. A multidisciplinary medical intervention is of paramount importance in the different phases of disease. The involvement of the palliative care team improves quality of life and symptoms, and prognosis. Early initiation is of paramount importance to ensuring patient-centered care, when the patient has still the capability to communicate effectively and participate in his medical care. Advance care planning supports patients and family members in understanding and sharing their preferences according to their personal values and life goals regarding future medical treatment. The principal problems which require intensive supportive care include cognitive disturbances, psychological distress, pain, sialorrhrea, nutrition, and ventilatory support. Communication skills of health-care professionals are mandatory to manage the inevitability of death. Palliative sedation has peculiar aspects in this population, particularly with the decision of withdrawing ventilatory support.
Frequency of euthanasia, factors associated with end-of-life practices, and quality of end-of-life care in patients with amyotrophic lateral sclerosis in the Netherlands: a population-based cohort study
2023, The Lancet Neurology
Amyotrophic lateral sclerosis is a progressive and lethal neurodegenerative disease that is at the forefront of debates on regulation of assisted dying. Since 2002, when euthanasia was legally regulated in the Netherlands, the frequency of this end-of-life practice has increased substantially from 1·7% of all deaths in 1990 and 2005 to 4·5% in 2015. We aimed to investigate whether the frequency of euthanasia in patients with amyotrophic lateral sclerosis had similarly increased since 2002, and to assess the factors associated with end-of-life practices and the quality of end-of-life care in patients with this disease.
Using data from the Netherlands ALS registry, we did a population-based cohort study of clinicians and informal caregivers of patients with amyotrophic lateral sclerosis to assess factors associated with end-of-life decision making and the quality of end-of-life care. We included individuals who were diagnosed with amyotrophic lateral sclerosis according to the revised El-Escorial criteria, and who died between Jan 1, 2014, and Dec 31, 2016. We calculated the frequency of euthanasia in patients with amyotrophic lateral sclerosis from reports made to euthanasia review committees (ERCs) between 2012 and 2020. Results were compared with clinic-based survey studies conducted in 1994–2005. End-of-life practices were end-of-life decisions by a clinician when hastening of death was considered as the potential, probable, or definite effect comprising euthanasia, physician-assisted suicide, ending of life without explicit request, forgoing life-prolonging treatment, and intensified alleviation of symptoms.
Between Jan 1, 2012, and Dec 31, 2020, 4130 reports of death from amyotrophic lateral sclerosis were made to ERCs, of which 1014 were from euthanasia or physician-assisted suicide (mean frequency 25% [SD 3] per year). Sex and gender data were unavailable from the ERC registry. Of 884 patients with amyotrophic lateral sclerosis who died between Jan 1, 2014, and Dec 31, 2016, their treating clinician was identified for 731 and a caregiver was identified for 741, of whom 356 (49%) and 450 (61%), respectively, agreed to participate in the population-based survey study. According to clinicians, end-of-life practices were chosen by 280 (79%) of 356 patients with amyotrophic lateral sclerosis who died. The frequency of euthanasia in patients with amyotrophic lateral sclerosis in 2014–16 (141 [40%] of 356 deaths in patients with amyotrophic lateral sclerosis) was higher than in 1994–98 (35 [17%] of 203) and 2000–05 (33 [16%] of 209). Median survival of patients with amyotrophic lateral sclerosis from diagnosis was 15·9 months (95% CI 12·6–17·6) for those who chose euthanasia and 16·1 months (13·4–19·1) for those who did not choose euthanasia (hazard ratio 1·07, 95% CI 0·85–1·34; p=0·58). According to caregivers, compared with other end-of-life practices, patients with amyotrophic lateral sclerosis choosing euthanasia commonly reported reasons to hasten death as no chance of improvement (53 [56%] of 94 patients who chose euthanasia vs 28 [39%] of 72 patients who chose other end-of-life practices), loss of dignity (47 [50%] vs 15 [21%]), dependency (34 [36%] vs five [7%]), and fatigue or extreme weakness (41 [44%] vs 14 [20%]). According to caregivers, people with amyotrophic lateral sclerosis—whether they chose euthanasia or did not—were satisfied with the general quality (83 [93%] of 89 patients who chose euthanasia vs 73 [86%] of 85 patients who did not) and availability (85 [97%] of 88 vs 81 [91%] of 90) of end-of-life care.
The proportion of patients with amyotrophic lateral sclerosis who chose euthanasia in the Netherlands has increased since 2002. The choice of euthanasia was not associated with disease or patient characteristics, depression or hopelessness, or the availability or quality of end-of-life care. The choice of euthanasia had no effect on overall survival. Future studies could focus on the effect of discussing end-of-life options on quality of life as part of multidisciplinary care throughout the course of the disease, to reduce feelings of loss of autonomy and dignity in patients living with amyotrophic lateral sclerosis.
Netherlands ALS Foundation.
Palliative care principles in ALS
2023, Handbook of Clinical Neurology
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease associated with progressive dysphagia, dysarthria, extremity weakness, and dyspnea. Although there are some disease-modifying pharmacological treatments available which can modestly slow disease progression, the disease is relentlessly progressive and is ultimately fatal. Patients living with ALS should be supported using the principles of palliative care, and in particular, the use of a holistic approach to support the patients and their families. Evidence would support management of patients living with ALS by a multidisciplinary ALS specialty clinic. These multidisciplinary clinics will help support the multitude of symptoms a patient living with ALS can experience, including dysphagia, communication impairments, dexterity impairments, mobility deficits, and respiratory insufficiency. Formal involvement of specialist-trained palliative practitioners can occur throughout the course of the illness, or when the patient is open to their involvement. There are several models of palliative care that can be followed, including integration of palliative care into the multidisciplinary ALS clinic, separate involvement of a palliative care specialty team, home-based palliative care, telemedicine supported care, and hospice care. Key components of palliative care in ALS are goals-of-care discussions advance directive planning, symptoms management, and end-of-life support.
Do patients diagnosed with a neurological disease present increased risk of suicide?
2023, Neurologia
Las enfermedades neurológicas representan la principal causa de discapacidad y la segunda causa de muerte a nivel mundial. El dolor físico y psicológico, la desesperanza y la desconexión con el medio están presentes tras el diagnóstico de numerosos procesos neurológicos y especialmente de las enfermedades neurodegenerativas.
Existe un mayor riesgo de suicidio en pacientes con enfermedades neurológicas comunes como la epilepsia, la migraña y la esclerosis múltiple, así como en quienes padecen trastornos degenerativos como la enfermedad de Alzheimer, la enfermedad de Huntington, la esclerosis lateral amiotrófica o la enfermedad de Parkinson. En la mayoría de los casos, la ideación suicida aparece en la etapa próxima al diagnóstico, ante sintomatología invalidante, y/o en pacientes que presentan comorbilidad psiquiátrica (a menudo asociada con dichas dolencias neurológicas).
Para una prevención efectiva del suicidio en este grupo de la población debe evaluarse el riesgo principalmente en pacientes recién diagnosticados, ante la expresión de marcada desesperanza, ante sintomatología invalidante y en pacientes que presentan comorbilidad psiquiátrica (especialmente síntomas depresivos). La formación de los especialistas para detectar signos de alerta es fundamental tanto para que puedan hacer un correcto abordaje como para que sean capaces de determinar cuándo es necesaria la valoración de un especialista en psiquiatría.
Neurological diseases are the leading cause of disability and the second leading cause of death worldwide. Physical and psychological pain, despair, and disconnection with the environment are observed after the diagnosis of numerous neurological processes, particularly neurodegenerative diseases.
A higher risk of suicide is observed in patients with such common neurological diseases as epilepsy, migraine, and multiple sclerosis, as well as in those with such degenerative disorders as Alzheimer disease, Huntington disease, amyotrophic lateral sclerosis, and Parkinson's disease. In most cases, suicidal ideation appears in the early stages after diagnosis, in the presence of disabling symptoms, and/or in patients with psychiatric comorbidities (often associated with these neurological diseases).
Effective suicide prevention in this population group requires assessment of the risk of suicide mainly in newly diagnosed patients, in patients showing unmistakable despair or disabling symptoms, and in patients presenting psychiatric comorbidities (especially depressive symptoms). It is essential to train specialists to detect warning signs in order that they may adopt a suitable approach and determine when psychiatric assessment is required.
Biotechnology applications in neurodegenerative diseases
2022, Biotechnology in Healthcare, Volume 2: Applications and Initiatives
Neurodegenerative diseases are persistent and contiguous nervous system disorders characterized by neuronal degradation or apoptosis. Current strategies of management of neurodisorders are emerging with novel biotechnological approaches of cell therapy, utilizing mesenchymal stem cells (MSCs). MSCs are pluripotent in nature and can follow process of self-renewal and multidirectional differentiation. Stem cells may act as a well-founded source of neuronal cells for promising cell replacement therapy or regenerative medicine approach. Stem cell research along with gene therapy research are being considered globally as the most recent modern methods holding great potential to treat devastating diseases with great fidelity. Gene therapy is meant for curing or preventing disorders by altering gene expression pattern. Stem cells may give rise to types of mature cells starting cell lineages due to cell renewal potential. Pluripotent embryonic stem cells extract from inner cell mass can make up more than 200 different types of cells and convert into three germinal layer cells. Due to the ultimate proliferation potential and pluripotent nature of stem cells, these may serve as an important tool for the treatments in regenerative medicine. The approaches by promising herbs to assist revival may help to overcome the survival potential.
The neuropalliative multidisciplinary team—Members and their roles
2022, Handbook of Clinical Neurology
Citation Excerpt :
Additionally, when recommending placement of a PEG or RIG tube, a discussion about future discontinuation of feeding should also occur. Advice should be sought from other members of the MDT, e.g., speech pathology and dietetics, the Neurologist and Palliative care team, to help guide the patient and family toward oral intake that is as safe as possible (Leigh et al., 2003; Connolly et al., 2015; Brown et al., 2020). Respiratory compromise is similarly a common element in the more advanced stages of many neurodegenerative disorders, as a result of recurrent lower respiratory tract infections, aspiration, weakening of the respiratory musculature, or neurally mediated central hypopnea.
Neurodegenerative conditions are prominent contributors to both morbidity and mortality worldwide. They pose a significant challenge to health professionals, health systems, and the often unpaid, untrained family members and carers. The many and varied challenges encountered are best managed by a multidisciplinary neuropalliative team, as it is impossible for a single clinician to possess and deliver the wide range of skills and services required to optimally care for these patients. This chapter discusses the assembly, maintenance, and care of such a team, as well as potential difficulties and solutions in domains such as funding, training, geographical remoteness, as well as the potential lack of awareness and acceptance by colleagues. A comprehensive description of the role of all possible team members is discussed.
The chapter outlines the concept, content, and potential benefits of a multidisciplinary team in neuropalliative care. Its thesis is twofold: that multidisciplinary care is vital and, second, that the sum of the whole of a team can be greater than the individual parts with respect to organization, planning, experience, and creativity of approach.
With all these factors considered, and implemented wherever possible, we may all move closer to optimizing the comfort and care of our shared neuropalliative patients.

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ReviewEnd-of-life management in patients with amyotrophic lateral sclerosis

Summary

Introduction

Section snippets

Best practice at the end of life

End-of-life discussions and decision making

Interventions and technologies

Dying and death from ALS

Assisted death in ALS

Conclusions

Search strategy and selection criteria

J Pain Symptom Manage

Patient Educ Couns

Patient Educ Couns

Patient Educ Couns

Eur J Oncol Nurs

J Pain Symptom Manage

Lancet Neurol

Handb Clin Neurol

Lancet Neurol

J Neurol Sci

Neurol Clin

J Neurol Sci

J Neurol Sci

Soc Sci Med

J Pain Symptom Manage

Neurol Clin

J Pain Symptom Manage

Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death

Neurologist

Survival analysis of irish amyotrophic lateral sclerosis patients diagnosed from 1995-2010

PLoS One

The development of a consensus paper on palliative care in neurology: the implications for ALS care

Amyotroph Lateral Scler Frontotemporal Degener

Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives

J Neurol Neurosurg Psychiatry

EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS): revised report of an EFNS task force

Eur J Neurol

Palliative care for people with neurodegenerative conditions

Palliative care and neurology: time for a paradigm shift

Neurology

Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers

Palliat Med

The final month of life in patients with ALS

Neurology

Promoting excellence in end-of-life care in ALS

Amyotroph Lateral Scler Other Motor Neuron Disord

A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS

BMJ

Quality of life of patients with amyotrophic lateral sclerosis

Psychol Health Med

Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin

Palliat Support Care

The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations

Amyotroph Lateral Scler

Meaning in life in patients with amyotrophic lateral sclerosis

Amyotroph Lateral Scler

End-of-life care and decision making in ALS/MND: A cross-cultural study

Amyotroph Lateral Scler

End-of-life decision making in 42 patients with amyotrophic lateral sclerosis

Respir Care

Empowering the individual with ALS at the end-of-life: disease-specific advance care planning

Muscle Nerve

Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group

Swiss Med Wkly

Some difficult decisions in ALS/MND

Amyotroph Lateral Scler

Respice…prospice: philosophy, ethics and medical care- past, present, and future

Philos Ethics Humanit Med

Palliative care education in Swiss undergraduate medical curricula: a case of too little, too early

Palliat Med

Teaching and training in breaking bad news at the Dutch medical schools: a comparison

Med Teach

A competency-based longitudinal core curriculum in medical neuroscience

Neurology

Doctors' stress responses and poor communication performance in simulated bad-news consultations

Acad Med

A framework for understanding moral distress among palliative care clinicians

J Palliat Med

Addressing moral distress: application of a framework to palliative care practice

Review
End-of-life management in patients with amyotrophic lateral sclerosis