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    • Home
    • What is Hospice
      • Eligibility & Criteria
      • Alzheimer's Disease
      • Congestive Heart Failure
      • End-Stage Renal Disease
      • Parkinson's Disease
      • Cerebrovascular Accident
      • Other Hospice Diagnoses
    • Services
      • Levels of Care
      • Skilled Nursing Care
      • Hospice Aide Services
      • Durable Medical Equipment
      • Supplies
    • About Us
      • Mission
      • Meet Our Team
      • Contact Us
    • Tiếng Việt
      • Tiếng Việt
      • Dịch vụ
      • Nhóm làm việc

  • Home
  • What is Hospice
    • Eligibility & Criteria
    • Alzheimer's Disease
    • Congestive Heart Failure
    • End-Stage Renal Disease
    • Parkinson's Disease
    • Cerebrovascular Accident
    • Other Hospice Diagnoses
  • Services
    • Levels of Care
    • Skilled Nursing Care
    • Hospice Aide Services
    • Durable Medical Equipment
    • Supplies
  • About Us
    • Mission
    • Meet Our Team
    • Contact Us
  • Tiếng Việt
    • Tiếng Việt
    • Dịch vụ
    • Nhóm làm việc

Parkinson's Disease

Parkinson's Disease and Hospice

 

Understanding Parkinson's Disease


Parkinson's Disease (PD) is a progressive neurodegenerative disorder that primarily affects dopamine-producing neurons in a specific area of the brain called the substantia nigra. The loss of these neurons leads to a decrease in dopamine, a chemical messenger vital for controlling movement, coordination, and mood.

  • What it is: PD is a chronic, progressive condition, meaning symptoms worsen over time. While it's known for affecting movement, it also causes a range of non-motor symptoms.
  • How it affects the brain: The hallmark of PD is the degeneration of dopamine-producing neurons and the presence of abnormal protein clumps called Lewy bodies within brain cells. This loss of dopamine leads to impaired communication between the brain and muscles, causing the characteristic motor symptoms.
  • Progression and Symptoms: PD progresses in stages, and the rate of progression varies greatly among individuals. 
    • Motor Symptoms (often the first noticed): 
      • Tremor: Involuntary shaking, often starting in a limb, especially at rest.
      • Bradykinesia: Slowness of movement, making simple tasks difficult and time-consuming.
      • Rigidity: Stiffness of the limbs and trunk, leading to limited range of motion and pain.
      • Postural Instability: Impaired balance and coordination, leading to falls.
      • Other Motor Symptoms: Shuffling gait, masked facial expression, reduced blinking, difficulty swallowing (dysphagia), speech changes (dysarthria), drooling.
    • Non-Motor Symptoms (can be present years before motor symptoms and become more prominent in later stages): 
      • Cognitive Impairment/Dementia: Problems with memory, attention, planning, and eventually, full-blown dementia in advanced stages.
      • Mood Disorders: Depression, anxiety, apathy.
      • Sleep Disorders: Insomnia, REM sleep behavior disorder (acting out dreams).
      • Autonomic Dysfunction: Constipation, urinary problems, orthostatic hypotension (drop in blood pressure upon standing), sexual dysfunction.
      • Pain and Sensory Issues.
      • Loss of Smell (Anosmia).


In the advanced stages of PD, motor symptoms become very severe, leading to profound immobility, frequent falls, and significant difficulty with all activities of daily living. Non-motor symptoms, especially dementia, swallowing difficulties, and autonomic issues, become predominant and significantly impact quality of life and prognosis.


Hospice Criteria for Parkinson's Disease


Hospice care for Parkinson's disease is generally considered when the disease has reached its advanced or end stage, and the patient's condition is severely debilitating, leading to a prognosis of six months or less if the disease runs its expected course. This often occurs when complications of the disease become life-threatening.

Specific indicators for hospice eligibility for individuals with Parkinson's disease, especially in its progressive forms, include:

  • Severe Functional Decline (Hoehn and Yahr Stage 5): Patients are typically in Hoehn and Yahr Stage 5, meaning they are:
    • Confined to a bed or wheelchair unless assisted.
    • Completely dependent on others for all activities of daily living (ADLs) such as eating, bathing, dressing, and toileting.
    • Often experience severe postural instability and frequent falls.
  • Significant Nutritional Impairment:
    • Severe dysphagia (difficulty swallowing) leading to recurrent aspiration pneumonia (pneumonia caused by food/liquid entering the lungs).
    • Weight loss of 10% or more in the past 6 months, or albumin level ≤2.5 g/dL, despite nutritional interventions.
    • May require feeding tube placement, or have chosen to decline it.
  • Recurrent Complications/Hospitalizations: The presence of one or more serious medical complications related to the advanced Parkinson's disease within the past 12 months, which, in combination with the overall decline, supports the 6-month prognosis. These often include:
    • Recurrent aspiration pneumonia: The most common cause of death in advanced PD.
    • Recurrent urinary tract infections (UTIs): Often due to immobility and bladder dysfunction.
    • Sepsis/bacteremia: Severe infections.
    • Multiple Stage 3 or 4 pressure ulcers (bedsores): Due to immobility and poor nutrition.
    • Recurrent fevers: Of infectious origin.
  • Cognitive Impairment/Dementia: Significant cognitive impairment or Parkinson's disease dementia that severely impacts judgment, safety, and communication. This often contributes to difficulty with self-care and understanding instructions.


Comorbidities: The presence of other life-limiting conditions (e.g., severe heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, advanced cancer) that, when combined with severe Parkinson's, contribute to the limited prognosis.


How Hospice Manages Parkinson's Disease

Hospice care for Parkinson's disease patients is focused entirely on palliative care, aiming to provide comfort, manage distressing symptoms, and support the patient and their family through the advanced stages of the disease. The interdisciplinary hospice team works to address the complex physical, emotional, and spiritual needs.


Here's how hospice manages Parkinson's Disease:

  • Symptom Control (Primary Focus): Hospice teams are skilled at managing the diverse and often challenging symptoms of advanced PD: 
    • Motor Symptoms (Tremor, Rigidity, Bradykinesia): While these can't be reversed, medications used for PD (e.g., levodopa) are continued and adjusted for optimal comfort and function, balancing benefits against side effects. The goal is to minimize stiffness and pain. Physical therapy (gentle range of motion exercises) helps prevent contractures.
    • Dysphagia (Difficulty Swallowing): This is critical. Hospice provides strategies to ensure safe and comfortable eating, such as thickened liquids, pureed foods, and feeding assistance. The team works to prevent aspiration pneumonia through positioning and careful feeding techniques. Decisions about feeding tubes are made with a focus on patient comfort and goals of care.
    • Pain: Pain (from rigidity, dystonia, immobility, or other causes) is actively managed with appropriate analgesics, positioning, massage, and other comfort measures.
    • Dyspnea (Shortness of Breath): May be due to aspiration, pneumonia, or weakened respiratory muscles. Oxygen therapy and medications like opioids can alleviate breathlessness.
    • Constipation and Bladder Dysfunction: Managed with appropriate medications, dietary adjustments, and scheduled toileting to enhance comfort and prevent complications.
    • Dementia/Cognitive Impairment: The team uses strategies to minimize confusion and agitation, such as maintaining a calm and consistent environment, using familiar routines, and providing gentle reorientation. Medications may be used cautiously for severe behavioral disturbances that cause distress to the patient.
  • Medication Management: Hospice nurses manage all medications, ensuring they are optimized for comfort and symptom control. They adjust dosages as needed, monitor for side effects, and provide a "comfort kit" of emergency medications for acute symptom management at home.
  • Activities of Daily Living (ADLs) Support: Hospice aides provide hands-on assistance with personal care such as bathing, dressing, oral hygiene, and toileting, maintaining the patient's dignity and comfort as their mobility declines.
  • Skin Care: Meticulous skin care is crucial to prevent pressure ulcers due to immobility and poor nutrition. Regular repositioning, special mattresses, and wound care are provided.
  • Caregiver Education and Support: 
    • Training: Hospice staff educate family caregivers on safe transfer techniques, symptom recognition, medication administration, and strategies for managing challenging behaviors or swallowing difficulties.
    • Respite Care: Short-term inpatient stays or in-home aide support provide caregivers with much-needed breaks from the intense demands of caring for an advanced PD patient.
    • Emotional and Spiritual Support: Social workers, counselors, and chaplains offer support to both the patient and family, addressing the emotional burden, anticipatory grief, and existential concerns associated with the progressive nature of PD.
  • Medical Equipment and Supplies: Hospice provides necessary medical equipment (e.g., hospital beds, wheelchairs, commodes, specialized seating) and supplies (e.g., incontinence products, wound care dressings) to ensure comfort and safety in the patient's home.
  • 24/7 Availability: Hospice teams typically provide on-call support 24/7, meaning a nurse is always available by phone to answer questions or make a home visit if symptoms worsen, helping to prevent unnecessary emergency room visits and hospitalizations.


Through this comprehensive, patient-centered, and comfort-focused approach, hospice care helps individuals with end-stage Parkinson's disease live their final months with dignity, peace, and as much comfort as possible, while providing vital support to their families.

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