As more organizations begin to adopt palliative care practices for patients with Parkinson disease, some may turn to the implemented plans of Cleveland Clinic as an example to follow.
Adam Margolius, MD
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Palliative care is an interdisciplinary approach that addresses physical, spiritual, emotional, and functional sources of distress. For patients with Parkinson disease (PD), the integration of this type of care can be used to help treat nonmotor symptoms such as pain, fatigue, and depression.
Despite its effectiveness, there are only a handful of institutions that provide this unique care, one of which is located at Cleveland Clinic. The Care-PD Clinic, headed by Adam Margolius, MD, is revolutionizing the way clinicians can treat patients with PD, and aims to set the standard for what a specialized clinic such as this could look like going forward.
In November 2019, Margolius and colleague Renato Samala, MD, traveled to Alberta, Canada, to meet with neurologist and palliative care expert Janis Miyasaki, MD, FRCPC, FAAN. Miyasaki, codirector of the Neuropalliative and Advanced Symptom Management Clinic at the University of Alberta, served as a main role model for the creation of the clinic. After observing how she ran her clinic for only a day, the duo was motivated to build something similar.
"The most striking thing we found was that every time they saw a patient, it was a group effort. It wasn’t that Dr. Miyasaki first saw the patient for neurology and then the palliative care specialist saw the patient next and then their social worker saw the patient after that. All 3 saw patients together. That’s what we did, and what we’ve been doing," Samala said. He works as a palliative care specialist at Cleveland Clinic Main Campus. While palliative care has slowly made its way within the PD field, the treatment approach has been utilized for several decades for various serious illnesses, such as cancer, heart failure and chronic lung disease.
Renato Samala, MD
Since its inauguration in August 2020, the clinic has cared for 19 patients with PD who have a mean age of 73 years. The team is relatively small, with Samala, Margolius, and a social worker operating as the mainstays for patients and their caregivers. Behind the scenes, there is a nurse coordinator that assists with forwarding patients that may be eligible for this upgraded type of care.
"We’ve been very fortunate at Cleveland Clinic to have these kinds of resources available,” Margolius said. "When we were designing the clinic, we were able to get basically everything we asked for. Those resources behind the scenes are just as critical as the caregivers who help run the clinic."
Margolius has been a movement disorders specialist at the Center for Neuro-Restoration at Cleveland Clinic since 2020 after finishing up his fellowship. He echoed some of Samala’s thoughts, noting that the ability to have all 3 specialists in the room at once allows for seamless communication. One of the unique aspects of the clinic is that caregivers are present in the room while the interdisciplinary team is curating the appropriate plan for the patient.
"With palliative care, there are 2 pieces to it," Samala said. "There’s primary palliative care, which is basic symptom management that every doctor should be able to do, and then there’s specialist palliative care, which is trained personnel like myself. When patients experience worsening visual hallucinations, frequent falls and progressive functional decline, they may need to consider transitioning to a long-term care facility and/or getting involved in a palliative care program.”
Palliative care offers several advantages to patients with PD, as the disease is characterized by a mountain of debilitating symptoms. A study published in 2020 by investigators, including Miyasaki, found that outpatient palliative care was associated with greater benefits on sveral aspects of disease compared with standard of care alone, including nonmotor symptom, burden, motor symptom severity, completion of advance directives, and quality of life.1
The study, which supported efforts to integrate palliative care into PD care, also showed significant differences favoring the intervention on caregiver anxiety and caregiver burden. A secondary analysis from that study also suggested that these benefits are even greater for those with a higher level of needs.
Using Quality of Life in Alzheimer Disease scale, compared with participants receiving standard care alone at 6 months, those on palliative care intervention had better quality of life (mean improvement, 0.66 [standard deviation (SD), 5.5] vs 0.84 worsening [SD, 4.2]; treatment-effect estimate, 1.87 [95% CI, 0.47-3.27]; P = .009). No significant difference was observed in caregiver burden (mean improvement, 2.3 [SD, 5.0] vs 1.2 improvement [SD, 5.6] in the standard care group; treatment effect estimate, −1.62; 95% CI, −3.32 to 0.09; P = .06).
Managing caregiver burden in PD is also significant because informal caregivers can make a substantial contribution to the well-being of patients with PD, incurring financial, social and personal losses.2 "In addition to assessing the patient, we also assess the caregiver, usually the patient’s spouse or another family member, in terms of the burden or strain they’re under," Margolius said.
"It’s not just the patient that’s involved in the patient’s health. They can only be doing as well as their caregiver is, really," Margolius continued. "We look to see how much stress they’re capable of [dealing with] and how close are they to that capacity. Then we provide resources or set them up with things that we can help them with, whether that be support groups or additional help around the house, things of that nature. That’s a big piece of the palliative care mindset that we don’t see in normal clinic visits."
In addition to easing some of the physical symptoms of PD such as pain, constipation, and fatigue, palliative care can help manage psychological challenges including grief and worry.3 Patients may also gain spiritual support and a greater education about diagnosis, progression, and their disease. While generally more advanced staged patients receive palliative care, there is no incorrect time for treatment.
The team at Cleveland Clinic also helps assist with advance care planning, which helps clarify what quality of life means now and how it may look in the future. They align personal goals patients may have with their current and future medical care.
"I’ve seen [our social worker] give information [to families] on when it’s time to transition to a long-term care facility," Samala said. "She spends a lot of time just being with the caregiver, offering support, and giving them a venue to vent and talk. I’ve also seen her offer information on getting resources in terms of durable medical equipment, as well as information on social opportunities or activities for patients and caregivers. It’s like we’re pieces of a puzzle."
While palliative care has become an arising phenomenon within the PD space, there are still questions that surround it, according to Margolius. Optimizing this type of care has been a challenge, especially with a limited research bank to draw from. “Right now, we don’t know a lot about what interventions are best in terms of timing, or what specific type for this population. Any data we can collect is good research in this area. What we’re doing at our clinic is basically characterizing the patients we see, obtaining data about what their symptoms and quality of life are like at the initial visit, and then following that over time,” he explained.
Margolius and his colleagues have yet to review those data. When evaluating palliative care, there are still questions regarding how the care is delivered.
"We don’t know yet how its best delivered, in terms of should it be virtual through the computer or in-person? What specific caregivers should play a role? Are we missing anyone? How do we handle those transitions from the hospital to the home? What is the right time to involve palliative care in Parkinson disease? There’s a lot of unanswered questions right now and we’re all as a community, figuring it out. There’s a lot of research going on now," Margolius said.
Going forward, palliative care should continue to play a major role in the management of patients with PD, especially those in later stages of life. Margolius noted that their center at Cleveland Clinic, as well as others like it, can help fill in the final pieces of the comprehensive care model, noting that without these palliative care practices, the model of care for patients can become haphazard and segmented.
"There’s been a big push to include palliative care in the care of neurological patients," Samala noted. "This is now the new frontier. The biggest challenge is getting people to realize that we play a huge role in the care for these patients. In the coming years, I don’t doubt that we will have a much bigger presence in neurology. It’s just starting to pick up."