“Stage 4. Aggressive. 12–15 months.”
These were the first few words my client shared with me at our initial evaluation. Though he was experiencing word finding issues due to aphasia — an acquired language disorder due to illness or injury to the brain — his message was clear: he was dealing with a life-limiting diagnosis. At that moment, our plan to evaluate his speech and language skills pivoted to a more essential conversation: Was he ready to talk about the care he wanted through the end of his life? If so, how could we support his communication abilities in order to share what matters most in his health care journey?
April 16 is National Healthcare Decisions Day, an initiative designed to empower people to start or continue conversations about their wishes for care through the end of life. For those living with communication disorders, conveying specific and clear decisions about concepts like what matters most is uniquely challenging. This is where Speech-Language Pathologists (SLPs) can play a critical role in offering the right support.
Medical SLPs specialize in helping people regain speech, language, swallowing, and cognitive-communication skills following an injury or illness. But their expertise extends beyond rehabilitation. SLPs serve vital roles on interdisciplinary palliative and hospice care teams, where they support patients and families in maintaining meaningful communication and quality of life. Their skill in providing clear, approachable education about disease processes and treatments help people make informed decisions, benefitting the individual, their care partners, and the medical team. SLPs practice a person-centered approach with the active listening skills necessary to facilitate health care decision-making based on personal values.
Working as a Team
Everyone deserves a say in their own care. For those living with cognitive-communication impairments, or progressive neurological conditions like dementia, conversations about health care wishes or advanced directives may not be possible in certain stages or situations. Individuals may struggle to understand complex medical terminology or to express abstract ideas like values or priorities. Too often, their communication challenges may be interpreted as a reason not to have the conversation at all. [Editor’s note: If you are a caregiver for a person who cannot express their wishes, there are suggestions for how to think about what your person would want on page 9 of the of the Conversation Starter Guide for Caregivers of People with Alzheimer’s or Other Forms of Dementia.]
SLPs are uniquely trained to bridge this gap. Through careful assessment and collaboration with patients, families, and health care teams, they can identify an individual’s strengths and needs, and then tailor communication support accordingly. This might involve creating personalized visual aids — such as picture-based decision-making tools or simplified written documents — that help the person understand their options. It may mean coaching family members or medical providers in supportive communication strategies, like writing key words and using yes/no questions to confirm understanding. It often takes a creative, flexible approach, using a variety of communication modalities, including pointing, gesture, drawing, or high- or low-tech augmentative communication systems.
The goal is always the same: to honor the person’s right to be an active participant in their own care.
Effective advanced care planning for people with communication challenges requires a team effort. SLPs work closely with physicians, nurses, social workers, chaplains, and families to ensure that communication access is not an afterthought but a priority of care. This collaboration can start early — ideally before a medical crisis — and continue as a person’s needs evolve. SLP interventions can feel empowering for the person with a communication disorder, and can also relieve some of the stress on family members who may otherwise feel unsure about how to navigate the choices in front of them.
Adapting to Changing Goals
As patients near the end of life, the goals of care often shift — from restoring function to preserving dignity, comfort, and connection. Here, too, SLPs have a role to play. They help families and caregivers understand how to interpret a loved one’s nonverbal signals or maintain communication as language abilities decline. They facilitate opportunities for individuals to share final messages, make legacy notes or recordings, or participate in spiritual or life review conversations. They guide the team in important decisions about eating and drinking, centering the choices of the individual and their preferences for pleasure feedings (enjoying the experience of eating, even if it’s not possible or needed to eat large amounts of food). These moments can bring comfort and closure — not only for the person dying, but also for those who love them.
Fortunately, my client was ready to engage in conversation and, though we had only met once before, he trusted me. We scheduled our therapy sessions during the morning hours, so we could talk before his fatigue impacted his word finding abilities.
I placed the Conversation Starter Guide where we could each view it, allowing him to both read and listen to the prompts. When discussing his wishes for how much information he would want to know about his treatment, we identified specific ways for him to advocate for his communication needs with his medical team. As he listed what a good day looks like to him, we developed a plan to make a photo-based communication book to share his favorite reading and music choices so that future care partners can ensure these are available even if he can’t request them verbally.
Planning for care through the end of life is about values, choices, and voice. For individuals with communication disorders, having a voice may require creativity, patience, and support. By bringing their expertise in communication to these intimate and important conversations, SLPs help ensure that no one is excluded from the right to participate in health care decisions.
Lauren Schwabish M.S., CCC-SLP is the owner of Neuro Speech Services, a private practice based in Northern Virginia, specializing in person-centered assessment and treatment of cognitive-communicative disorders related to stroke, acquired brain injury, mild cognitive impairment, ADHD, and other neurologic and neurodegenerative conditions. She has over 25 years of experience working in hospitals and acute rehabilitation centers and is passionate about providing meaningful and accessible health education about the brain to patients, families, and health care professionals. Lauren is committed to empowering communities with evidence-based information and best practices in brain health behaviors.