Neuro-Palliative Care: A Vital Layer of Support for People Living with ALS

Heather E. Leeper, MD, MS, Assistant Professor, The University of Chicago Biological Sciences Division, Department of Medicine, Section of Geriatrics and Palliative Medicine

Neuro-palliative care is specialized medical care for people living with serious neurologic illnesses, such as ALS. Its goal is to help individuals live as well as they can for as long as they can. Neuro-palliative care is appropriate at any point after diagnosis and can begin as early as the time of diagnosis.

This compassionate, person-centered approach focuses on maximizing quality of life and reducing suffering. It recognizes that individuals living with serious neurologic illness may experience not only physical distress but also psychological, social, existential, and spiritual distress.

Neuro-palliative care clinicians—such as neurologists and advanced practice nurse providers—are experts in communication, listening, and providing an extra layer of support to individuals and their caregivers by:

• Managing symptoms so people feel better and function as best they can
• Helping people understand their diagnosis, what is happening now, and what to expect in the future
• Exploring ways to cope with change and the stress of being ill, including the impact of not feeling or functioning as before
• Supporting emotional well-being, including processing difficult emotions like grief and anger, and offering coping strategies for individuals and caregivers
• Addressing what is most important, concerning, or worrying to the person living with the illness and their caregivers
• Helping ensure that healthcare aligns with a person’s goals, values, and priorities
• Identifying ways to leverage family, friend networks, and community resources to support needs
• Coordinating care with other healthcare teams and specialties

People living with ALS often experience a wide range of symptoms beyond weakness, such as muscle stiffness, cramping, fatigue, constipation, shortness of breath, difficulty managing saliva, pain, anxiety, depression, involuntary emotional expression (e.g., laughing or crying), and trouble sleeping. As such, many individuals with ALS require intensive symptom management best provided by an interdisciplinary team. This team may include a neuromuscular neurologist, pulmonologist, palliative medicine physician, speech pathologist, physical and occupational therapists, social worker, and/or chaplain.

Neuro-palliative care helps people living with ALS identify what matters most to them and what concerns they have as they navigate decisions around feeding tubes, breathing devices, communication tools, and more—while also addressing emotional and psychological needs. These clinicians support individuals and their caregivers in processing the complex emotions that arise while living with ALS. They also help explain medical issues, terminology, and treatment options to ensure that patients are empowered to make informed decisions that align with their wishes.

Neuro-palliative care emphasizes autonomy and supports individuals in making decisions that they believe are best for them.

The best way for people with ALS to maintain control over their care, regardless of what happens, includes two key steps:

Designate a Healthcare Power of Attorney (POA):

Identify and document who should make medical decisions on your behalf if you become unable to do so. In Illinois, if someone is legally married—even if estranged or not living with their spouse—the spouse is automatically considered the surrogate decision-maker unless a legal guardian is appointed or someone else has been designated as the healthcare POA. If there is no legal spouse, guardian, or designated POA, Illinois state surrogacy law establishes the following order of decision-makers:

• Any adult children of the patient
• Either parent of the patient
• Any adult sibling of the patient
• Any adult grandchild of the patient
• A close friend of the patient
• The patient’s guardian of estate

Communicate Your Wishes:

Clearly express to your designated healthcare POA what is most important to you (e.g., being able to communicate, staying at home, being comfortable), what you would consider acceptable or unacceptable (e.g., being on mechanical ventilation, living in a long-term care facility), and what you would want to happen if your heart and breathing were to stop. Would you want your death to be honored peacefully, or would you prefer that 911 be called and emergency measures such as CPR and intubation be performed in an attempt to resuscitate you?

Hospice is a separate healthcare service from palliative care. It is specialized medical care for individuals diagnosed with a terminal condition and a life expectancy of six months or less if the illness runs its natural course. Hospice focuses on symptom management and quality of life during the final stages of life.

Hospice is a service—not a place—and it comes to wherever the patient resides. It does not typically cover room and board unless the patient requires constant hospice nursing care due to at least one uncontrolled symptom. A standard hospice team includes a hospice nurse, home health aide, hospice physician, social worker, and chaplain. Together, they collaborate to manage symptoms, reduce distress, and provide compassionate end-of-life care and support.