Table of ContentsView AllTable of ContentsSigns of End-Stage DiseaseIncreased Risk of DyingHospice CareHospice Eligibility
Table of ContentsView All
View All
Table of Contents
Signs of End-Stage Disease
Increased Risk of Dying
Hospice Care
Hospice Eligibility
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.
Verywell / Jessica Olah
What Are the Stages of Parkinson’s Disease?
Signs of End-Stage Parkinson’s Disease
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.
What Is Parkinson’s Disease?
Motor (movement-related) symptoms that accompany end-stage PD include:
Very Limited MobilityIn 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.
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:
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:
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. WithMedicareinsurance coverage, two doctors are needed to certify a six-month-or-lessprognosis.
Most insurance plans, including Medicare, Medicaid, and private health insurance, cover hospice care services.
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.
Keep in MindMost 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).
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).
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:
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 withactivities 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:
Life-threatening complications that may occur in end-stage PD include:
Palliative Care for Parkinson’s DiseaseIf your loved one is not eligible for hospice, the good news is that they can still receivepalliative 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.
Palliative Care for Parkinson’s Disease
If your loved one is not eligible for hospice, the good news is that they can still receivepalliative 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, 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.
8 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Luquin M-R, Kulisevsky J, Martinez-Martin P, Mir P, Tolosa ES.Consensus on the definition of advanced Parkinson’s disease: A neurologists-based Delphi study (CEPA Study).Parkinsons Dis.2017; 2017: 4047392. doi:10.1155/2017/4047392Schapira AHV, Chaudhuri KR, Jenner P.Non-motor features of Parkinson disease.Nat Rev Neurosci. 2017;18(8):509. doi:10.1038/nrn.2017.62Won JH, Byun SJ, Oh BM, Park SJ, Seo HG.Risk and mortality of aspiration pneumonia in Parkinson’s disease: A nationwide database study.Scientific Reports. 2021;11. doi:10.1038/s41598-021-86011-wAmerican Parkinson’s Disease Association.End-stage Parkinson’s disease and risk of death.Lum HD, Kluger BM.Palliative care for Parkinson disease.Clin Geriatr Med.2020 Feb; 36(1): 149–157. doi:10.1016/j.cger.2019.09.013Akbar U, McQueen RB, Bemski J et al.Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: A systematic review.J Neurol Neurosurg Psychiatry.2021;92(6):629-636. doi:10.1136/jnnp-2020-323939Ryu DW, Han K, Cho AH.Mortality and causes of death in patients with Parkinson’s disease: A nationwide population-based cohort study.Front Neurol. 2023;14:1236296. doi:10.3389/fneur.2023.1236296National Institute on Aging.What are palliative care and hospice care?
8 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Luquin M-R, Kulisevsky J, Martinez-Martin P, Mir P, Tolosa ES.Consensus on the definition of advanced Parkinson’s disease: A neurologists-based Delphi study (CEPA Study).Parkinsons Dis.2017; 2017: 4047392. doi:10.1155/2017/4047392Schapira AHV, Chaudhuri KR, Jenner P.Non-motor features of Parkinson disease.Nat Rev Neurosci. 2017;18(8):509. doi:10.1038/nrn.2017.62Won JH, Byun SJ, Oh BM, Park SJ, Seo HG.Risk and mortality of aspiration pneumonia in Parkinson’s disease: A nationwide database study.Scientific Reports. 2021;11. doi:10.1038/s41598-021-86011-wAmerican Parkinson’s Disease Association.End-stage Parkinson’s disease and risk of death.Lum HD, Kluger BM.Palliative care for Parkinson disease.Clin Geriatr Med.2020 Feb; 36(1): 149–157. doi:10.1016/j.cger.2019.09.013Akbar U, McQueen RB, Bemski J et al.Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: A systematic review.J Neurol Neurosurg Psychiatry.2021;92(6):629-636. doi:10.1136/jnnp-2020-323939Ryu DW, Han K, Cho AH.Mortality and causes of death in patients with Parkinson’s disease: A nationwide population-based cohort study.Front Neurol. 2023;14:1236296. doi:10.3389/fneur.2023.1236296National Institute on Aging.What are palliative care and hospice care?
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Luquin M-R, Kulisevsky J, Martinez-Martin P, Mir P, Tolosa ES.Consensus on the definition of advanced Parkinson’s disease: A neurologists-based Delphi study (CEPA Study).Parkinsons Dis.2017; 2017: 4047392. doi:10.1155/2017/4047392Schapira AHV, Chaudhuri KR, Jenner P.Non-motor features of Parkinson disease.Nat Rev Neurosci. 2017;18(8):509. doi:10.1038/nrn.2017.62Won JH, Byun SJ, Oh BM, Park SJ, Seo HG.Risk and mortality of aspiration pneumonia in Parkinson’s disease: A nationwide database study.Scientific Reports. 2021;11. doi:10.1038/s41598-021-86011-wAmerican Parkinson’s Disease Association.End-stage Parkinson’s disease and risk of death.Lum HD, Kluger BM.Palliative care for Parkinson disease.Clin Geriatr Med.2020 Feb; 36(1): 149–157. doi:10.1016/j.cger.2019.09.013Akbar U, McQueen RB, Bemski J et al.Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: A systematic review.J Neurol Neurosurg Psychiatry.2021;92(6):629-636. doi:10.1136/jnnp-2020-323939Ryu DW, Han K, Cho AH.Mortality and causes of death in patients with Parkinson’s disease: A nationwide population-based cohort study.Front Neurol. 2023;14:1236296. doi:10.3389/fneur.2023.1236296National Institute on Aging.What are palliative care and hospice care?
Luquin M-R, Kulisevsky J, Martinez-Martin P, Mir P, Tolosa ES.Consensus on the definition of advanced Parkinson’s disease: A neurologists-based Delphi study (CEPA Study).Parkinsons Dis.2017; 2017: 4047392. doi:10.1155/2017/4047392
Schapira AHV, Chaudhuri KR, Jenner P.Non-motor features of Parkinson disease.Nat Rev Neurosci. 2017;18(8):509. doi:10.1038/nrn.2017.62
Won JH, Byun SJ, Oh BM, Park SJ, Seo HG.Risk and mortality of aspiration pneumonia in Parkinson’s disease: A nationwide database study.Scientific Reports. 2021;11. doi:10.1038/s41598-021-86011-w
American Parkinson’s Disease Association.End-stage Parkinson’s disease and risk of death.
Lum HD, Kluger BM.Palliative care for Parkinson disease.Clin Geriatr Med.2020 Feb; 36(1): 149–157. doi:10.1016/j.cger.2019.09.013
Akbar U, McQueen RB, Bemski J et al.Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: A systematic review.J Neurol Neurosurg Psychiatry.2021;92(6):629-636. doi:10.1136/jnnp-2020-323939
Ryu DW, Han K, Cho AH.Mortality and causes of death in patients with Parkinson’s disease: A nationwide population-based cohort study.Front Neurol. 2023;14:1236296. doi:10.3389/fneur.2023.1236296
National Institute on Aging.What are palliative care and hospice care?
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