Neurodegenerative diseases are devastating diagnoses that take an emotional toll. Discussing mobility, cognitive changes, and advance care planning can be distressing, especially for younger patients.
Working through disorders such as Parkinson’s disease, dementia, amyotrophic lateral sclerosis (ALS), muscular dystrophy, and others may require a full reevaluation of what terms such as “quality of life” and “personal wishes” mean to patients and their families. Joy, unfortunately, is often left out of the conversation.
Through the course of a chronic and progressive illness, most people can still find happiness. Omitting pleasure and comfort from the care planning discussion is a missed opportunity to achieve a higher level of satisfaction than patients might expect.
UT Southwestern launched its Neuropalliative Clinic in 2023 for this very reason. We bring together neurologists and social workers who help families navigate the murky times, prioritizing patients’ health needs in tandem with their values and preferences. Our clinic, part of the Department of Neurology, is one of just a handful in the U.S., and the only one of its kind in Texas. We served 200 patients in our first year, and we are growing.
Neurodegenerative disorders can take so much away from patients, so we try to empower them to express their wishes to live their best lives. Having conversations about morbidity and mortality in a constructive way can make the time you have together more enjoyable and peaceful.
What is neuropalliative care?
Neuropalliative care is an extra layer of support for patients with neurodegenerative diseases. Similar to palliative care support for people with cancer or in a hospice setting, neuropalliative teams provide supplemental care beyond the medical plan.
Neurodegenerative disorders are incurable and worsen over time. Any UT Southwestern neurology patient with one of these disorders is eligible for services. We customize care plans for each patient and family, approaching them from two perspectives: symptom management and decision-making.
Symptom management
Patients with neurodegenerative diseases often have several complex symptoms due to the disease or potential side effects from treatment. Common concerns include:
- Cognitive changes
- Anxiety
- Bladder dysfunction
- Depression
- Constipation
- Disrupted sleep
- Fatigue
- Musculoskeletal pain
- Speech and voice changes
Sometimes, patients feel that it’s “not worth it” to treat these symptoms or that feeling poorly every day is inevitable. Most of the time, that is not the case.
A pillar of neuropalliative care is that no disruptive symptoms should be ignored. Uncomfortable, limiting symptoms can and should be treated. Research shows that incorporating palliative care early in a neurodegenerative condition can improve symptom management and reduce unnecessary hospitalizations, interventions, and family stress.
With each patient, we discuss barriers in daily life: What causes discomfort? What stresses the family? Are they strained financially? We talk through options to address each concern and answer patients’ questions about their prognosis. Our role is to align their needs, preferences, and values, providing guidance to achieve their wishes.
Because we are a multidisciplinary health care center, we can connect people with any type of medical, mental health, or spiritual support they might need.
Related reading: A young neurologist diagnosed with ALS is inspiring a call to action
Decision-making
Conversations about morbidity and mortality can help families prepare for the many ways their lives will change with a neurodegenerative disease. For example, these disorders frequently cause reduced cognition along with physical symptoms.
Having these discussions early gives patients opportunities to voice their preferences and make more informed decisions about their care. We approach topics frankly, acknowledging that the situation is tough as we explore preferences in parallel with needs.
These are some of the topics we help families navigate.
What does ‘quality of life’ mean for me?
Often, people underestimate the quality of life of patients with chronic conditions. Patients in the early stages of illness may also not realize how gratifying their life can be after interventions begin. But almost always, preferences and priorities evolve as a neurodegenerative disorder progresses.
For example, patients may say, “I would never tolerate using a wheelchair.” Perhaps they watched a loved one struggle to adjust or become isolated due to mobility changes. But with planning and support, many people can maintain a fulfilling, enjoyable life when they get their own chair.
Neuropalliative teams encourage patients to think about their quality of life as a whole. When one aspect of life changes, even dramatically, it does not necessarily mean everything else falls apart. We explore complicated, shifting feelings and help patients frame what their decisions and future interventions might mean for their specific condition.
Related reading: How Glen’s journey to getting a power wheelchair got much smoother
Building support from within
Jenny Riecke, M.D., completed her neurology residency and fellowships in neuromuscular medicine and palliative care at UT Southwestern. Though she started out with the goal of becoming a stroke neurologist, interacting with the palliative care team during her intern year made a big impact on her approach to neurological care.
“I was very impressed with their ability to communicate with patients,” Dr. Riecke said. “When I started my neurology rotations, I saw that patients with Parkinson’s disease who were hospitalized late in the disease never really had palliative care conversations early on.”
She collaborated with Neurology Department leadership to build a neuropalliative care community at UT Southwestern, which evolved into an official clinic that opened in 2023.
What advance care plans will we create?
Advance care planning involves much more than creating an advance directive – a legal document that describes patients’ wishes for their care if they can no longer communicate.
Our goal in these discussions is to empower patients with medical decision-making skills. In these ongoing discussions, we provide information for people to explore their options and decide what works best for them.
Patients reshape what they do and don’t want as new interventions are introduced, such as feeding tubes or breathing assistance, and when unexpected needs arise. Our role is to help families understand their options and document the patient’s wishes as they shift over time.
Medical decision-making discussions also cover general health care. People who are in the early stages of a neurodegenerative disease may have questions about colonoscopies, mammograms, and other routine screenings.
Depending on your age, personal health history, risk factors, and the severity of your condition, you may need more or fewer exams over time. Neuropalliative specialists can answer your questions and coordinate with other providers to meet your needs without unnecessary tests or procedures.
Can you help my family understand my decisions?
Family members often face conflicting emotions through a loved one’s neurodegenerative disease. They grieve for how that person’s life is changing along with their own and may question or resist the patient’s care choices.
This can significantly affect a caregiver’s health. When faced with difficult treatment decisions, caregivers can develop grief, post-traumatic stress disorder, anxiety, and depression. These concerns, if left unaddressed, can lead to challenging dynamics among family members when they need one another most.
Often, family disagreements about care plans and medical decision-making are a result of incomplete communication. By exploring how each person feels and why, we can help families reach a resolution that preserves their relationships and the patient’s preferences.
Today, the UTSW neuropalliative clinic is in a growth phase. We are expanding to include services such as chaplaincy and educational opportunities for future neurologists and palliative care professionals. The goal is to add neuropalliative care providers who support patients and families from diagnosis through end-of-life care.
Living with a neurodegenerative disorder is a series of unique challenges for patients and families. Neuropalliative care provides a space for everyone to discuss what they need and want to live as well as possible at every point of the disease progression.
To talk with an expert about neuropalliative care, make an appointment by calling 214-645-8800 or request an appointment online.
