Interdisciplinary Clinic Meets Distinctive Care Needs of Those With Advanced Parkinson’s Disease

Specialists in movement disorders, palliative care and social work join together to improve quality of life

In August 2020, Cleveland Clinic launched the Comprehensive Assessment and Treatment Program for Parkinson’s Disease (CARE-PD), one of only a handful of clinics of its kind across the U.S.

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“Our interdisciplinary clinic is for people with Parkinson’s disease and palliative care needs,” explains Adam Margolius, MD, a movement disorders neurologist in Cleveland Clinic’s Center for Neurological Restoration. “Our focus is on improving the quality of life for patients by providing relief from the most distressing symptoms of advanced Parkinson’s disease.”

Complementary skills fit like a puzzle

The CARE-PD clinic — a collaboration between the Center for Neurological Restoration and the Department of Palliative and Supportive Care in Cleveland Clinic Cancer Center — is held two half-days per month. During the team-based appointments, patients and their caregivers see Dr. Margolius along with palliative care specialist Renato Samala, MD, and a social worker.

Since opening, the CARE-PD clinic has cared for approximately 30 patients. “A small number of patients are at the end of life, either due to Parkinson’s or another medical problem,” Dr. Margolius says. “But most of our patients are struggling with the non-motor symptoms of Parkinson’s. That means we spend a bit more time talking about pain, constipation, confusion, depression and anxiety, whereas a traditional Parkinson’s disease physician tends to focus on tremor, slowness and stiffness.”

The interdisciplinary approach is key. “Our personalities and roles fit perfectly, like three pieces of a puzzle,” says Dr. Samala.

Dr. Margolius leads the encounter, discussing the patient’s symptoms and medications. Dr. Samala uses the Edmonton Symptom Assessment Scale for Parkinson’s Disease (ESAS-PD) to help identify, assess and manage late-stage Parkinson’s symptoms. He also discusses advance care planning with patients, asking about advance directives (i.e., living will and healthcare power of attorney) and code status.

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The social worker — a role that Dr. Samala calls “a pillar of palliative care” — helps patients navigate medical and social systems. In addition to providing resources for home care and equipment and facilitating communication among patient, family and healthcare team, the social worker assists with long-term care planning and addresses issues such as grief and psychosocial concerns.

Support for caregivers is essential

Another distinctive aspect of the clinic is its focus on the patient’s caregiver(s) as well as the patient. “We know the strain on the caregiver can be significant with advanced Parkinson’s,” Dr. Margolius notes. “The patient can only do as well as their caregiver is doing, so we have to make sure the mental and physical health of the caregiver is OK.”

The team administers the Zarit Burden Interview, a 22-item instrument to measure caregiver strain, and then reviews items that the caregiver scored high on. Based on responses, the team can offer emotional support and resources to alleviate the caregiver’s stress.

“The CARE-PD clinic tries to make all phases of care a little more seamless,” says Dr. Margolius. “Seeing the three of us together makes the day more manageable for patients and their families than separate appointments. They don’t have to repeat themselves. Everybody is on the same page, and we develop the plan of care together.”

Neurologists need to embrace palliative care

Drs. Margolius and Samala encourage neurologists to watch out for signs that might prompt referral to the CARE-PD clinic or other palliative care programs. These include:

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  • An increase in symptom burden, particularly non-motor symptoms
  • A decrease in quality of life
  • Caregiver burden, fatigue or burnout
  • The need for extra help at home or admittance to a long-term care facility

The CARE-PD clinic can be a difference maker for patients and their families. One of the program’s first patients was a man in his 70s diagnosed with Parkinson’s several years previously who was referred to the clinic because of cognitive impairment and caregiver burden. The team set up extra help around his house, encouraged the family to take advantage of community resources, helped the patient complete advance care planning documents and provided extra support when the patient’s wife required surgery.

“With additional support that we helped set up, the patient and his wife were able to continue living at home, which was one of their main goals,” says Dr. Margolius.

He would like to see more neurologists integrate palliative care into their practices. “When palliative needs are high, a lot of people living with Parkinson’s reach out to their primary care doctor or try to find a specialist on their own,” says Dr. Margolius. “Neurologists can and should be playing a major role in palliative care.”