There is a lot of misunderstanding about Parkinson’s disease. Many assume that it is immediately debilitating. Yet on average, this slowly progressive disease can take six to 22 years to run its course.
Parkinson’s causes nerve cell damage in an area of the brain that produces dopamine. As dopamine levels drop, it can lead to tremors, slow movement, stiffness and loss of balance. The disease has five stages, and when a patient reaches the fifth stage, they require round-the-clock help from a caregiver. Families should consider if hospice care should be part of their care plan. But there are indications in stages 3 and 4 that could lead to families getting the help they need earlier from a hospice provider.
One warning sign is recurrent infections that lead to “the cycle.” This goes from an emergency room visit, to hospitalization and then back home before the next incident. With Parkinson’s patients, we often see aspiration pneumonia as the start of this cycle. The progress of the disease causes them to lose their ability to swallow, which can lead to fluids or food in their lungs.
Another indicator is significant weight loss. The inability to swallow makes people eat less. Additionally, having pureed food makes eating less enjoyable, leading to more weight loss.
We also track ADL, which is medical talk for Activities of Daily Living. This includes the ability to eat on your own, walk without assistance and dress and bathe yourself. Losing the independence of self-care can soon lead to stage 5, which is when a patient goes from needing some assistance to requiring help with all their activities.
Roughly 40 to 50 percent of Parkinson’s patients will suffer from dementia. That can add to the decline of their ADL and can contribute to a physician’s decision to refer a patient to hospice care.
Reviewing these and other factors, a physician can then determine whether a patient should be referred to hospice care by helping them answer this question: Would they be surprised if the patient were to die in the next six months? If the answer is no, then the patient and the family should consider seeking hospice care.
The key is not to wait. Hospice offers various levels of care for patients to manage their pain and symptoms with comfort and dignity to help the patient and their family fully live the highest quality of life possible.