Palliative care is undergoing a revolution as doctors explore innovative ways to treat patients with terminal diseases. These advancements are focused on improving quality of life from the moment of diagnosis. Cancer care has set the standard for integrating palliative care, but in recent years, the Peter O’Donnell Jr. Brain Institute at UT Southwestern Medical Center has recognized the opportunity to apply these best practices in treating progressive neurological diseases, including Parkinson’s disease and related disorders, memory disorders, and amyotrophic lateral sclerosis (ALS). These conditions, which are marked by progressive decline and complex symptoms, demand a holistic treatment approach that addresses not only the physical effects, but also the emotional and psychological impacts on patients and their families. With the July 2023 creation of the Neurology Palliative Care Clinic – one of the only clinics of its kind – UT Southwestern sought to bridge this gap while honoring the O’Donnell Brain Institute’s mission to provide the best possible care today while creating a future of better treatment and prevention.
Jenny Riecke, M.D., Assistant Professor of Neurology and Internal Medicine
The Genesis of the Neurology Palliative Care Clinic
During her neurology residency at UT Southwestern, Jenny Riecke, M.D., Assistant Professor of Neurology and Internal Medicine, found herself deeply inspired by the palliative care team's approach to treating patients. "I had interacted with our palliative care group as a resident and really admired how they treat the whole patient," she recalls. This holistic approach, often more associated with cancer care, has informed her vision for treating neurological patients. Upon expressing her interest in palliative care to the leadership, she was met with unwavering support. "They told me we could do it, and the rest is history," Dr. Riecke shares. This encouragement and empowerment – which she’d felt since her first days on the UT Southwestern campus – inspired her to pursue specialized training in neuromuscular medicine and a fellowship in palliative care, ultimately leading to the establishment of the Neurology Palliative Care Clinic.
Addressing Unique Challenges in Neurology
Neurological diseases present unique challenges that extend beyond the physical manifestations. Dr. Riecke highlights that patients often face symptoms that are not only physically debilitating, but also emotionally distressing. "In patients with cancer, there’s typically more information regarding prognosis and how to treat their symptoms. Our patients have very challenging symptoms – some of them having more chronic emotional distress related to loss of identity and physical and cognitive function, or symptoms like cramps that we just don’t have good treatments for.” It’s themes like this – a lack of medication options to relieve extreme cramps – that the team works to uncover as it delves into what is still a new field for neurology. Identifying these challenges prompts the research and the steps necessary to find solutions and be flexible for patients in critical need.
A Multidisciplinary Approach
One of the innovative aspects of the Neurology Palliative Care Clinic is its integration of social work support. Recognizing that neurological diseases often involve a slow and chronic loss of ability, the clinic provides comprehensive care that includes support for both patients and their caregivers. "UT Southwestern has integrated more social work support into our clinic because one of the challenges that neurology patients face is our diseases are more chronic in their timeline, and they have a slow loss of ability to care for oneself," Dr. Riecke notes. This integration helps develop and enhance community resources and care partner support – areas where traditional insurance and Medicare fall short.
Understanding the Whole Patient
A key component of the clinic’s approach is understanding the patient beyond their disease, which greatly improves their long-term care. This involves in-depth discussions about their daily struggles, their values, and what brings them joy. Dr. Riecke emphasizes the importance of these conversations: "It's surprising how much patients open up with you and how much they appreciate that, and for us, getting to know them more fully helps us make better care recommendations." It’s become abundantly clear that by focusing on the patient's overall well-being, the clinic can better tailor its interventions and support.
Early Palliative Care: A Paradigm Shift
Dr. Riecke advocates for the early integration of palliative care in the treatment of neurological diseases. "For neurological diseases, it’s never too early for palliative care. Finding out who the patient is, what kind of struggles they're facing, as well as what is important to them, is key," she asserts. Early palliative care allows for proactive management of symptoms such as pain and mobility issues, as well as crucial conversations about long-term decision-making. "The most important thing to me is, do you have a surrogate decision maker if you can't talk to your doctor?" Dr. Riecke adds.
Intentional Caregiver Focus
The clinic has also stepped up to serve not just patients, but the families. There's a lot of caregiver burden in neurologic diseases, partially because of their chronicity and also because of the change to everyone’s identities and roles. Dr. Riecke and her team work closely with the medical family therapy group, which is integrated in the O’Donnell Brain Institute’s ALS clinic. If the Neurology Palliative Care Clinic feels that patients or families need extra support, that’s another resource available to them while the dedicated social worker stays on top of concerns. And if caregiver burnout is apparent, the team will intervene with extra support and resources to manage through things.
The Road Ahead
As a new type of center leading the way, the Neurology Palliative Care Clinic has a significant impact. By learning from patients and developing better treatments for their symptoms, the clinic aims to extend its benefits beyond its immediate patient base. Sharing successful interventions with primary neurologists can help more patients receive better care early on. Moreover, interdisciplinary collaboration and ongoing research are backed by UT Southwestern and becoming increasingly vital in advancing the field.
Dr. Riecke and the entire team at the clinic provide exceptional care that transcends traditional medical treatment. By treating the whole patient and addressing both physical and emotional needs, the Neurology Palliative Care Clinic at UT Southwestern is setting a new standard in the care of patients with serious neurological diseases, and building the most prestigious team of medical professionals to take it even further.