A diagnosis of Parkinson’s Disease can bring about diverse reactions in patients and their families, including fear, uncertainty, and confusion. While the disease is incredibly common (the National Institute of Neurological Disorders and Stroke acknowledges that 500,000 Americans are diagnosed with Parkinson’s but estimates that as many as 1 million could actually have Parkinson’s), much of the American public is unaware of what a diagnosis of Parkinson’s disease actually means. Popular figures including Michael J. Fox and Muhammad Ali show the diversity of what living with Parkinson’s actually looks like.
“It’s important to see your medical provider for a diagnosis, as the symptoms of Parkinson’s disease can overlap with other disease processes,” says Sara Pagliaro, DO, Chief Medical Officer of Samaritan. And while patients diagnosed with Parkinson’s can typically live with the disease for 15 years and even longer, and treatment may help manage the symptoms, it is important to remember that a cure for Parkinson’s has yet to be discovered, says Stephen Goldfine, MD, DABFP, CAQGM, DABHP, Physician Executive of Samaritan.
“Often the family and patients don’t realize that it’s really a terminal disease,” Dr. Goldfine says. “We do tend to have a long time. But our job as physicians is to prepare for the decline.”
For that reason, Pagliaro adds, “Care coordination is paramount with Parkinson’s Disease, because it’s important to set goals at each level of your illness and ensure your care team is aware of these goals.” Samaritan can help patients diagnosed with Parkinson’s Disease and their families through a continuum of care, from diagnosis to end-stage.
A progressive neurologic brain disorder, Parkinson’s Disease causes involuntary, uncontrolled movements. Patients may exhibit tremors and shaking, as well as significant stiffness in arms and legs, making movement painful. Balance and walking may become difficult for some, while others develop trouble swallowing and may struggle with smiling or making a facial expression.
Ultimately, Parkinson’s may lead to mood swings and cognitive difficulties, including confusion, difficulty sleeping and possibly hallucinations at night – but not always.
The exact cause of Parkinson’s Disease is unknown, but it occurs when neurons in the brain start to fail and stop producing dopamine. A decrease in dopamine in the brain can lead to the issues with movement that are a hallmark of Parkinson’s Disease. And while some cases of Parkinson’s may progress slowly, “if we don’t prepare for the decline, then we miss the opportunity to have the patient involved in their decision-making,” says Dr. Goldfine. That’s why Samaritan care providers will always stress the importance of communication throughout every stage of care coordination, beginning with its HomeVisit Physicians program.
In the comfort of their own home, patients can receive an evaluation and treatment from HomeVisit Physicians, Samaritan’s specialty physician house-call practice. Patients will first receive a visit from a member of the Samaritan clinical staff – a physician, nurse practitioner or physician assistant – for a comprehensive evaluation.
The HomeVisit Physicians program treats patients with Parkinson’s disease via a multi-pronged approach, focusing on education, medical management, and communication. Initial visits with the HVP focus on educating every patient, their caregivers and family members about the illness, the illness trajectory, complications which could develop, and their overall prognosis. Follow-ups visits may include coordinating with specialists, such as a neurologist, and reviewing medication and previous treatments to develop a thoughtful plan for managing the disease.
Throughout it all, HomeVisit Physicians act as the “quarterback” of care for the patient, weaving in the all-important communication between patient, family, other physicians and specialists, and other members of the Samaritan care team.
Samaritan physicians who are established with a Parkinson’s patient early in the diagnosis are perfectly situated to know how the patient is doing and when to incorporate palliative care. “I would actually like to see patients with Parkinson’s disease have palliative care services very early on in their disease process,” Dr. Pagliaro says. The benefits of palliative care early in the process for patients with Parkinson’s are numerous and help address a patient’s emotional, physical, and spiritual needs. Medication management in particular can help alleviate the painful symptoms of Parkinson’s and address movement issues.
“When a patient is not able to do the things that they had once done functionally, such as walking or other daily chores, or they are facing memory issues related to doing things like paying bills, it means this is a time where we should look at the next steps in the disease process and start asking, ‘What are my goals?’” says Dr. Pagliaro. The Samaritan palliative care can help facilitate these goal-oriented discussions.
“What do I want and not want done for my body? Do I want to have conversations about artificial means, about feeding tubes, about needing full care in a care setting, and think about advance care planning?” Dr. Pagliaro asks. “If I do have dementia with Parkinson’s disease and I can’t speak for myself whatsoever, what kind of decisions do I want my loved ones to make for me on my behalf?” Patients and their families need to consider tough questions, including who will be in charge of long-term care needs, and if a patient is comfortable with the idea of feeding tubes and artificial nutrition. Having discussions and agreeing on an advanced care plan at this stage helps empower the patient – and their family – to seek the kind of care they want.”
And furthermore, being prepared and having these conversations can bring peace of mind, says Dr. Pagliaro. “When patients are faced with a very life-limiting, serious illness, they feel like they might be losing control. It’s important to give back control and provide them with that dignity.”
When Parkinson’s Disease progresses to end-stage status, many patients may elect to take a more conservative approach and focus on quality of life and staying home instead of pursuing aggressive treatment. In that case, Samaritan would make a referral to hospice, and continue the thread of coordinated care that began with Home Visit Physicians and continued through palliative care.
“As Parkinson’s Disease progresses, there may be swelling issues and patients may develop aspiration pneumonia, where food enters into the lungs,” says Dr. Goldfine. “They may have increased pain, increased anxiety, and some patients lose that ability to interact with their family.” Muscles and appendages sometimes become stiff to the point of pain – so Samaritan’s hospice program works to ease pain and bring comfort, including massage therapy, and even pet therapy.
“When the [pet therapy] dogs come in, you see our patients light up,” says Dr. Goldfine. “It’s about love and laughter and comfort for those patients, and the dogs help, especially in hospice – they’ll climb on the bed so patients can give them big hugs and kisses.
“Hospice allows patients to be more comfortable in their own home environment,” he continues. “That’s where patients want to be. They don’t want to go back and forth to the hospital. We focus on making sure a patient has the right amount of care, the right amount of medication, and the supportive team that helps with the caregiving for that patient.”
At every stage of Parkinson’s Disease, the Samaritan care team makes it a priority to listen to the patient’s wishes, and to provide them with thoughtful, dignified care coordination. “As you move through the common stages of Parkinson’s disease, your care needs become more complicated. Tough decisions need to be discussed,” says Dr. Pagliaro. “As such, having a care team that puts your patient-centered goals first, like Samaritan, is very important.”