End-Stage Parkinson's and Signs of Increased Risk of Death

There are signs in people with Parkinson's disease that may indicate that the person is at increased risk of dying. These include increased difficulty swallowing, becoming confined to a wheelchair or bed, malnutrition, or complications like aspiration pneumonia or pressure ulcers.

At this stage, patients become candidates for hospice care, a service that focuses on easing symptoms and improving a person's comfort at the end of life.

This article will address signs of end-stage Parkinson's disease, signs that someone is at increased risk of dying, as well as options for hospice care and hospice eligibility.

Signs of End-Stage Parkinson's Disease

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

In the early stages of Parkinson's, symptoms include mild shaking and stiffness. As the disease advances, loss of balance and slow movement (bradykinesia) begin to impair daily function.

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.
  

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.
  

End-Stage Parkinson's and Increased Risk of Dying

Parkinson's disease in itself is not a fatal illness. However, the symptoms of the disease create the conditions that ultimately lead to someone's death. They include:

• Aspiration pneumonia: Aspiration pneumonia accounts for 70% of all deaths from Parkinson's disease. When someone has difficulty swallowing, the risk of inhaling fluid or food to the lower respiratory tract can lead to aspiration pneumonia.
• Falls: Balance problems can cause someone with Parkinson's disease to fall and become injured. When someone hits their head and sustains a head injury or even breaks a bone, the risk of dying increases.
• Pressure ulcers: When someone stays in the same position for a long time, pressure on the tissues can lead to pressure ulcers, which can lead to more widespread infection, even sepsis.
• Infection: When someone has advanced Parkinson's disease, common infections like urinary tract infections (UTIs) have the potential to become much more serious.

Hospice Care for Advanced Parkinson's

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.

Eligibility for Hospice Care with Parkinson's Disease

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

Breathing Problems

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.

Rapid Disease Progression

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:

• Recurrent aspiration pneumonia
• Stage 3 or 4 pressure ulcers
  

Summary

Symptoms of end-stage Parkinson's disease include very limited mobility, extremely slow movements, and cognitive and psychotic problems.

Some symptoms can lead to life-threatening complications. For instance, swallowing problems can lead to aspiration pneumonia, balance problems can lead to falls, pressure ulcers can introduce infection, and general frailty can cause common infections to become more widespread and possibly life-threatening.

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.