Understanding End-Stage Parkinson's Hospice Criteria

Parkinson’s disease is a progressive neurodegenerative disorder, meaning that over time it slowly gets worse, leading to worsening symptoms and complications. Those living with Parkinson’s may have questions about what to expect during end-stage Parkinson’s and how to plan for end-of-life-care as the disease progresses. Understanding end-stage Parkinson’s hospice criteria can help you or a loved one feel less overwhelmed when making healthcare decisions at the end of life. 

Understanding the Stages of Parkinson’s

More than 1 million people in the United States are living with Parkinson’s disease, and it is the second most common neurodegenerative condition after Alzheimer’s disease. ¹ There is no cure for Parkinson’s, and this condition has five stages that progress over time. It is more common after the age of 65, with research showing a decreased lifespan following diagnosis. ² 

Stage 1

In the first stage of Parkinson’s, symptoms are mild and appear on one side of the body. These can include motor (movement) symptoms like tremors, stiffness (rigidity) and slowed movements (bradykinesia). The Parkinson’s disease symptoms can impact walking, facial expressions and posture, but don’t interfere with daily tasks. 

Stage 2

Worsening symptoms begin to affect both sides of the body. Motor symptoms interfere with posture and balance more than they did in Stage 1, but the person can still complete daily tasks without assistance. Walking and other activities may be slower. 

Stage 3

Also called mid-stage Parkinson’s, in Stage 3, Parkinson’s motor symptoms and balance issues worsen further. Falls are more common, and some daily tasks may be restricted. The person can continue to function independently for most activities. 

Stage 4

At this stage, patients experience severe disability and cannot perform daily tasks without assistance. Although mobility is very limited, they can still stand and walk with support from a cane or walker. 

Stage 5

In this advanced stage of Parkinson’s, the symptoms have progressed to the level that walking and standing is impossible. The person is wheelchair or bed-bound and needs total, comprehensive care. In this stage, complications can lead to serious illness and/or loss of life. 

Symptoms of End-Stage Parkinson’s Disease

Those with Parkinson’s that has progressed to either Stage 4 or Stage 5 are considered to be in end-stage or advanced Parkinson’s disease. There are both motor and non-motor Parkinson’s disease symptoms that develop in these stages that require additional care. Both patients and caregivers may have questions about the best treatment options and when to consider hospice care as more complications develop. 

Motor Symptoms of End-Stage Parkinson’s

In end-stage Parkinson’s, motor symptoms are more pronounced. These can affect balance and walking as bradykinesia worsens, resulting in frequent falls. It can also cause speech and swallowing problems.  

Non-Motor Symptoms of End-Stage Parkinson’s

While motor symptoms get much of the attention in Parkinson’s, non-motor symptoms can significantly impact quality of life. ³ Like motor symptoms, non-motor symptoms worsen in end-stage Parkinson’s. These symptoms include Parkinson’s dementia, psychosis (including hallucinations), sleep disorders, constipation, urinary frequency and urinary incontinence. 

Common Complications of End-Stage Parkinson’s

The motor and non-motor symptoms of end-stage Parkinson’s can cause complications and lead to frequent trips to the hospital. Increased, serious complications can be a sign that death is near in end-stage Parkinson’s. These can include: 

Falls

As many as 60% of people living with Parkinson’s fall each year. ⁴ In the last stages of Parkinson’s, this risk is elevated and can lead to injuries like broken bones and head trauma.  

Aspiration Pneumonia 

Swallowing difficulty in end-stage Parkinson’s can lead to aspiration, where food or fluids accidentally enter the lungs. This can lead to aspiration pneumonia, which is responsible for as many as 70% of deaths in Parkinson’s disease. ⁵ 

Pressure Ulcers 

Limited mobility can mean extended time in bed or a wheelchair, leading to increased risk of skin breakdown, pressure ulcers and infection. 

Dementia 

Parkinson’s dementia is more common in older individuals who have had Parkinson’s for more than five years. ⁶ Dementia has a negative impact on quality of life and those with dementia need special care at the end of life. 

Parkinson’s Hospice Criteria

If you or a loved one have been told a Parkinson’s diagnosis is now end-stage, it can be hard to know when it’s time for hospice care. There are some Parkinson’s hospice criteria to look for: 

• Your doctor certifies that you have six months or left to live if your health condition runs its normal course 

• You have chosen to focus only on treatments that improve comfort and quality of life and to forego curative treatment 

• For Medicare/Medicaid to cover hospice care, the provider must be certified by Medicare or Medicaid 

If these conditions are met, choosing hospice can mean more time spent at home, less time at the hospital and improved quality of life throughout a person’s final days. It’s also important to know that you can change your mind at any time about hospice care.  

Even if you decide it’s not the right time for hospice care, palliative care for Parkinson’s disease can help you at any stage of the diagnosis. ⁷ This type of care can help you navigate the challenges of managing Parkinson’s symptoms as well as planning for end-of-life care in the final stages when appropriate. 

Are you interested in hospice support for end-stage Parkinson’s but still have questions? Our hospice specialists can help guide you through the process. Contact a care center near you today or fill out the form below and we’ll get in touch. 

Deb Gallaher, MBA, MSN, RN, NE-BC, CHPN, is a Senior Hospice Clinical Education Specialist for Amedisys. She has 10 years of experience in hospice and is passionate about sharing her insights on high-quality care.