Chapter 10 - Palliative treatment of chronic neurologic disorders

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Abstract

Patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Therefore, symptom management and palliative care approaches should be included from the beginning of the illness. Palliative care aims at improving a patient’s quality of life by alleviating suffering due to physical, psychosocial, and spiritual factors. Since no curative and only limited life-prolonging treatment options are available for most chronic neurologic disorders, a palliative care approach can help to create a treatment plan that considers all aspects of the disease. We have provided palliative care approaches for the most common neurodegenerative disorders like dementia, multiple sclerosis, Parkinson’s disease, and amyotrophic lateral sclerosis. A palliative approach to neurologic disorders does not simply mean limiting treatment and focusing on pain. Instead, the whole unit of care, consisting of the patient, relatives, and caregivers, should be perceived with all their needs.

Introduction

Whereas a palliative care approach is commonly accepted for neurologic patients with a glioblastoma or brain metastases, a palliative approach to management currently is not followed in many other neurologic disorders. Yet, decades ago, in her visionary concept of palliative care, Cicely Saunders included patients with amyotrophic lateral sclerosis (ALS) and other motor neurone diseases (MND). We embrace her “total symptom” multiprofessional approach, in which early palliative care is integrated into the care of patients suffering from chronic neurologic disorders.

Section snippets

Parkinson's disease and related conditions

Parkinson’s disease (PD) and Parkinson-related conditions, such as progressive supranuclear palsy (PSP), multiple system atrophy (MSA), and corticobasal degeneration (CBD), are more common than ALS and usually have a longer course of disease. No disease-modifying or effective neuroprotective agents are currently effective for any of these diseases. Disease trajectory is frequently divided into the supportive phase, the phase of transition, and the terminal phase (Bunting-Perry, 2006).

Patients

Dementia

Because of the worldwide increase in life expectancy, an increase in dying persons with dementia is expected. The number of patients suffering from dementia currently is estimated at 35.6 million. Presumably, this number will double by 2030 and triple by 2050 (World Health Organization, 2012). Therefore, an increasing number of people die with dementia. A population-based study conducted in Britain found that 6% of individuals aged 65–69 and 60% of those aged 95 suffered from dementia at the

Multiple sclerosis

Multiple sclerosis (MS) is a chronic, relapsing, progressive inflammatory autoimmune disorder of the brain, spinal cord, and optic nerves that affects 2.5 million people worldwide and in some countries constitutes the most common cause of neurologic disability among young adults. In recent years, a number of immunomodulatory therapies have been developed that can modify disease activity (Miller and Rhoades, 2012). However, the effect of these therapies on the natural history of the disease

Amyotrophic lateral sclerosis

The diagnosis of ALS is a devastating event for the patient and family. The lack of curative therapeutic options, the limited benefit of existing life-prolonging treatments, and the often rapid progression make a palliative approach to treatment indispensable. The multitude of symptoms producing suffering and the usually unforeseeable onset of symptoms require a flexible and efficient multiprofessional care plan. For neurologists, the main task after confirming the diagnosis is to identify and

References (36)

  • P. Edmonds et al.

    Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service

    Mult Scler

    (2010)
  • European Code of Good Practice. Available online at:...
  • D.C. Ewbank

    Deaths attributable to Alzheimer’s disease in the United States

    Am J Public Health

    (1999)
  • H. Förstl et al.

    Dying demented

    Fortschr Neurol Psychiatr

    (2010)
  • H. Golla et al.

    Unmet needs of severely affected multiple sclerosis patients: the health professionals' view

    Palliat Med

    (2012)
  • D.A. Gruenewald et al.

    Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review

    Mult Scler

    (2004)
  • I.J. Higginson et al.

    Symptom prevalence and severity in people severely affected by multiple sclerosis

    J Palliat Care

    (2006)
  • R.T. Koopmans et al.

    Palliative care in patients with severe dementia

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