Eligibility for End-Stage Parkinson's Disease Hospice Care

Hospice worker comforting client

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Parkinson's disease (PD) is caused by the loss of functional dopamine-producing nerve cells deep within the brain. The loss of dopamine in the brain causes symptoms like stiffness, slow movements, balance problems, and depression.

As a progressive disease, PD's symptoms slowly worsen over time. While the disease affects people in unique ways, there are typical patterns of progression, defined by five stages.

In stage 1 and stage 2 of Parkinson's, patients may experience mild shaking and stiffness. As the disease advances into stages 3 and 4, loss of balance and slowness of movement (bradykinesia) begin to impair daily functioning.

Stage 5 is the final, most debilitating stage of PD. In this stage, patients are wheelchair- or bedbound and require 24-hour nursing care. Eventually, patients become candidates for hospice care, a service that focuses on easing symptoms and improving patient comfort at the end of life.

This article reviews what is needed for a hospice care referral. You'll also learn about the symptoms of end-stage Parkinson's disease.

Symptoms of End-Stage Parkinson's

Patients are said to have end-stage Parkinson's disease at stages 4 and 5 of the disease.

At these stages, symptoms are so severe that medication stops working well, and patients require full-time caregiver assistance.

Motor (movement-related) symptoms that accompany end-stage PD include:

  • Advanced bradykinesia: Movements are extremely slow, and patients have frequent freezing episodes (when they are suddenly unable to move).
  • Significant speech changes: Patients may have a very soft voice and experience speech freezing (when they cannot get their words out).
  • Increased fall risk: Patients are at an increased risk of falling from a combination of poor balance, severe stiffness, and orthostatic hypotension (low blood pressure when changing positions).
  • Severe dysphagia: Difficulty swallowing can lead to weight loss, malnutrition, dehydration, and a lung infection called aspiration pneumonia.

Very Limited Mobility

In stage 4 of Parkinson's, patients may be able to stand on their own, but they cannot move without assistance or a wheelchair. In stage 5, patients cannot stand or move on their own and require a wheelchair all the time or are bedridden.

Non-motor symptoms, which are symptoms not related to movement, may also be present in end-stage PD. Among them are:

  • Parkinson's dementia: A significant, permanent decline in attention, memory, and problem-solving may be present.
  • Psychosis: Hallucinations (seeing or hearing things that aren't there) or delusions (firmly believing something that is clearly not true) may occur.
  • Severe constipation: Slowed gut motility from PD, immobility, and dehydration all contribute to constipation.
  • Urinary problems: Patients often have to urinate frequently and may experience incontinence (uncontrollable loss of urine).
  • Sleep disorders: Insomnia or other sleep disorders may develop or worsen.

Hospice Eligibility

The goal of hospice care is to optimize comfort and ease physical, emotional, and mental suffering during the dying process.

Members of a hospice care team include a doctor, nurse, social worker, and home health aide. A spiritual counselor and rehabilitation therapists like a speech therapist or physical therapist may also be part of the team.

In the United States, hospice care is available to patients who are expected to live six months or less. With Medicare insurance coverage, two doctors are needed to certify a six-month-or-less prognosis.

There are no formal PD eligibility guidelines for determining when a hospice referral should be made.

Instead, doctors and hospice agencies usually consider factors relevant to PD like a patient's history of falls, hospitalizations, withdrawal from activities, inability to perform self-care, and/or lack of benefit from medication.

They may also use general guidelines intended to cover an array of neurological disorders.

For instance, the Medicare hospice guidelines for neurological illnesses state that patients must meet one of the following two criteria to be eligible for hospice:

  1. Critically impaired breathing, including shortness of breath at rest, vital capacity less than 30%, oxygen need at rest, and refusal of a ventilator (a breathing machine)
  2. Rapid disease progression with either a critical nutrition impairment in the prior year or life-threatening complications in the prior year

It's important to note that the first criterion—critically impaired breathing—is unlikely to be applicable in Parkinson's disease.

Primary respiratory problems are not typical in advanced PD. That said, breathing problems may occur in patients with PD who develop severe aspiration pneumonia as a result of an impaired swallowing ability.

The second criterion—evidence of rapid disease progression in the prior year—tends to be more useful for patients with end-stage PD.

To clarify, rapid disease progression means that patients are bedridden, have unintelligible speech, require a pureed diet, and/or need major assistance with activities of daily living (ADLs). All of these symptoms or circumstances are common in end-stage PD.

According to the second criterion, along with rapid disease progression, patients must have a critical nutrition impairment or a life-threatening complication in the prior year.

A critical nutrition impairment is common in end-stage PD and means that patients are:

  • Unable to maintain sufficient fluid/calorie intake
  • Continue to lose weight
  • Experience dehydration
  • Refuse artificial feeding methods

Life-threatening complications that may occur in end-stage PD include:

Keep in Mind

Most patients with PD die from the same diseases—heart disease, stroke, and cancer—that others do. As such, hospice care may be considered even before a patient with PD reaches the end stages of their disease (as long as their life expectancy prognosis is six months or less).

Palliative Care as an Option

If your loved one is not eligible for hospice, the good news is that they can still receive palliative care. This type of care focuses on alleviating symptoms, discomfort, and stress associated with any illness, including PD.

The main difference between palliative care and hospice is that palliative care can be given along with standard treatments, including therapies intended to prolong life.

Summary

Symptoms of end-stage Parkinson's disease include very limited mobility, extremely slow movements, falls, and cognitive and psychotic problems. Hospice care may be considered when patients have a life expectancy of six months or less. If not eligible for hospice, patients can obtain similar symptom-easing benefits from palliative care services.

A Word From Verywell

Deciding when it is time to enter hospice care can be a difficult decision for a person and their loved ones. However, being admitted to hospice level of care can ensure a person and their caregivers have access to a variety of services they need at this stage.

While the criteria say a person should be predicted to be in their last six months of life to begin hospice care, rest assured there is no time limit placed on hospice services.

Frequently Asked Questions

Frequently Asked Questions

  • How long does the final stage of Parkinson's last?

    There is no definite timeline when it comes to the final stage of Parkinson's disease. Hospice care is available when a patient has a life expectancy of six months or less.

  • What are the first steps toward getting hospice care?

    First, discuss hospice care with the person with PD and include their family members/caregivers. Next, set up a meeting with the patient's primary care doctor or neurologist to review goals of care and hospice eligibility and services.


  • Does insurance cover hospice care?

    Most insurance plans, including Medicare, Medicaid, and private health insurance, cover hospice care services.

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7 Sources
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