Neurological diseases and conditions such as Amyotrophic Lateral Sclerosis (ALS), Huntington's chorea, and Parkinson's disease can lead to severe neurological symptoms, impacting quality of life and requiring specialized care. Let's review the common neurological diseases encountered in hospice and discuss evidence-based treatment options and therapeutic approaches to mitigate the symptoms associated with these conditions. At Knights of Comfort, we individualize every person's program, so this is a simple introduction to some understanding of these diseases and providing comprehensive end-of-life care.
NEUROLOGICAL DISEASES
Neurological diseases are a group of disorders affecting the nervous system, often resulting in progressive deterioration of motor function, cognition, and overall well-being. Hospice care aims to provide compassionate and holistic support to individuals nearing the end of life, emphasizing comfort and quality of life. We will discuss the disease characteristics for three neurological diseases: ALS, Huntington's chorea, and Parkinson's disease, symptom management, and therapeutic approaches based on current evidence.
Amyotrophic Lateral Sclerosis (ALS)
ALS, also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder affecting motor neurons. Symptoms include muscle weakness, spasticity, dysphagia, and respiratory compromise. Respiratory failure is the primary cause of mortality in ALS patients.
Treatment Approaches:
Pharmacological interventions: Riluzole and Edaravone are FDA-approved medications shown to slow disease progression and extend survival.
Symptom management: Multidisciplinary care teams can address symptoms such as pain, dyspnea, dysphagia, and pseudobulbar affect through comprehensive palliative care.
Assistive devices: Mobility aids, communication devices, and ventilatory support may improve functional independence and quality of life.
When To Consider Hospice?
- When respiratory function significantly declines, and the patient requires continuous ventilatory support.
- When dysphagia and weight loss become severe, leading to malnutrition and aspiration pneumonia.
- When the patient experiences significant pain, discomfort, or distress that cannot be adequately managed.
- When the patient's overall functional status declines to the point where they require substantial assistance with activities of daily living.
Huntington's Chorea
Huntington's chorea is an autosomal dominant genetic disorder characterized by motor abnormalities, cognitive decline, and psychiatric symptoms. Choreiform movements, cognitive impairment, and behavioral disturbances are common manifestations.
Treatment Approaches:
Pharmacotherapy: Medications such as tetrabenazine, antipsychotics, and selective serotonin reuptake inhibitors (SSRIs) can help manage chorea, psychosis, and depression.
Psychosocial support: Counseling, support groups, and caregiver education are crucial in addressing the emotional and psychological challenges faced by patients and families.
Symptom management: Physical therapy can improve mobility and reduce the risk of falls. Occupational therapy helps maintain independence in daily activities.
When To Consider Hospice?
- When the disease progresses to a stage where the patient's motor abilities are significantly impaired, impacting independence and quality of life.
- When cognitive decline becomes severe, leading to significant impairment in decision-making, memory, and daily functioning.
- When psychiatric symptoms, such as psychosis or severe depression, are present and significantly affect the patient's well-being.
- When the patient and their family express a desire for palliative care and support to manage the challenges associated with the disease.
Parkinson's Disease
Parkinson's disease is a progressive neurodegenerative disorder characterized by bradykinesia, rigidity, tremors, and postural instability. Non-motor symptoms such as cognitive impairment, depression, and autonomic dysfunction are also prevalent.
Treatment Approaches:
Medications: Levodopa, dopamine agonists, and other medications help manage motor symptoms. Medication adjustments may be necessary to balance benefits and side effects.
Deep Brain Stimulation (DBS): In advanced cases, DBS can alleviate motor symptoms, although this intervention may not be suitable for all patients.
Rehabilitation therapies: Physical therapy, occupational therapy, and speech therapy can help improve functional abilities, maintain mobility, and address communication difficulties.
When To Consider Hospice?
- When motor symptoms, such as bradykinesia and postural instability, progress to a stage where the patient experiences frequent falls and has significant difficulty with mobility and self-care.
- When non-motor symptoms, such as dementia, psychosis, or severe depression, significantly impact the patient's quality of life and cannot be adequately managed.
- When the patient experiences significant fluctuations in medication response, leading to unpredictable and uncontrollable motor fluctuations.
- When the patient and their healthcare team determine that the burdens associated with ongoing disease management outweigh the potential benefits of further interventions.
