End-Stage Parkinson’s: What to Expect

Parkinson’s disease is a progressive neurodegenerative disorder that causes dopamine levels to drop. When most people think about the symptoms of Parkinson’s disease, they picture tremors, muscle stiffness, slow movement, and loss of balance. These symptoms are present in the early stages of Parkinson’s disease.

Parkinson’s disease affects each individual differently. Some people are diagnosed with Parkinson’s disease early in life and remain in the early stages for many years. Others will skip stages or rapidly progress to end-stage Parkinson’s disease.

What is End-Stage Parkinson’s Disease? 

Regardless of how long it takes to get there, when patients reach stage four of Parkinson’s disease, their symptoms become debilitating. Patients with stage four Parkinson’s disease have visible bradykinesia and rigidity. In most cases, stage four patients need assistance to walk, stand, and move.

When patients reach stage five – the final stage of Parkinson’s disease – they will have severe posture issues in their back, neck, and hips. They will require a wheelchair and may be bedridden.

In end-stage of Parkinson’s disease, patients will also often experience non-motor symptoms. These can include incontinence, insomnia, and dementia. Some medications used to treat Parkinson’s disease can cause hallucinations. This is seen more frequently if the patient also has dementia.

Hospice Eligibility for Parkinson’s Disease 

Due to the progressive nature of Parkinson’s disease, it can be challenging for families to know when their loved one is eligible for the support of hospice care. If a loved one has been diagnosed with six months or less to live or if they have experienced a decline in their ability to move, speak, or participate in the activities of daily living without caregiver assistance, it is time to speak with a hospice professional about next steps. 

Some of the things that that determine hospice eligibility for Parkinson’s disease include: 

• Difficulty breathing including dyspnea at rest or the need for supplemental oxygen at rest
• Rapid progression to wheelchair or bed bound
• Unintelligible speech
• Inability to perform Activities of Daily Living (ADLs) without assistance
• Inability to eat or drink sufficiently
• Complications including pneumonia, sepsis, pyelonephritis, decubitus ulcers
• Additional comorbidities

Hospice care is covered by Medicare, Medicaid, and most traditional insurance plans at no cost to the family. All medications, medical equipment, and medical supplies related to the patient’s terminal illness will be provided at no cost. In addition, Crossroads Hospice & Palliative Care will coordinate a plan of care with the patient’s physician and family to ensure all of their physical, emotional, and spiritual needs are met.

If an individual with end-stage Parkinson’s disease is not yet eligible for hospice care, they may benefit from Crossroads’ palliative care program which partners with the patient’s physician to provide home visits from a nurse practitioner and social worker. These visits can be especially helpful if the patient is no longer able to walk on their own, making visits to the doctor’s office more challenging.

Plan Ahead

It can be empowering for patients who have been diagnosed with Parkinson’s disease to make their end-of-life wishes known early in the disease progression by creating an advance directive and establishing a durable power of attorney to ensure their healthcare wishes are followed.

Hospice care can provide invaluable support to families as their loved one’s condition declines. To learn more about the care we offer to patients with Parkinson’s disease, please call 855-327-4677.

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