From Sustaining Life to Honoring It: Redefining the SLP’s Role in End-of-Life Care

Written after taking a new course by Caitlin Saxtein MS, CCC-SLP, BCS-S, CBIS

Have you ever walked into a patient’s room knowing that everything you were trained to do (restore, recover, and maximize independence) no longer applies?

Imagine a patient like Tom, an 82-year-old gentleman admitted for the third time this year due to advanced, aggressive lung cancer. His health is rapidly declining, and his doctor has initiated a hospice consultation. Tom is now easily fatigued, his appetite has vanished, and he's experiencing dysphagia with liquids, leading to an obvious wet vocal quality and cough. His daughter is distressed, pleading, "Please, just tell me what diet is safe so he doesn't starve. Do we need to get him a feeding tube? What should we do?"

More than anything else, caring for a patient at the end of life is a shift in perspective…

As SLPs, our traditional rehabilitation model often focuses on recovery and rehabilitation. The patient is ill or weak, and it’s our job to help them get better and stronger. That’s the formula and it works phenomenally well… for the most part. But when the focus shifts from food to sustain life to food to honor life, our goals must change too. 

What’s the goal? 

Asking the patient and/or family what the goal is during the initial assessment is… everything. Without a goal, we’re literally lost. We can be extremely efficient and move as quickly as possible: conducting exercises, educating patients on strategies, performing instrumental swallowing evaluations, and utilizing the most innovative technologies to guide the patient in a specific direction. But if that direction isn’t toward their goal, what are we doing? We’re just moving really fast in the wrong direction. And that’s not helpful for anyone. 

Goals change over time. This shouldn’t surprise anyone. Are your goals today the same as your goals were when you were 18 years old? Hopefully not. When people change and their circumstances change, their wants and needs change accordingly. This could not be truer for people suffering from terminal illness. 

The delicate, compassionate work we perform in end-of-life (EOL) care

What’s the Difference Between Hospice, Palliative Care, and Rehab? If we aren't focused on recovery, what are we doing? And how does our intervention fit into the broader care plan? Questions like this get to the core of what we are trying to do for our patients in EOL care. 

It’s common for families—and even some clinicians—to confuse the different EOL care models. So let’s clear some of this up…

Palliative Care is care provided at any stage of a serious illness and focuses on relieving suffering and managing symptoms (physical, emotional, spiritual, and social) rather than pursuing a cure.

Hospice Care is a specific type of palliative care. To qualify, a patient must be documented as having an anticipated prognosis of generally six months or less. The entire focus is on comfort and maintaining dignity.

A common myth is that therapy services are not covered in hospice. In reality, therapy is a crucial component in maximizing comfort at the end of life. Our role is to join the interdisciplinary team, which may include physicians, social workers, and chaplains, to provide whatever support the patient needs to reach their goals. Even if this is as simple as comfortably sipping a warm soup a couple of times a day. We’re there for the patient, to assess and develop strategies that might make this a possibility for them.

If our patients aren't recovering, are we really making a difference? 

Many people think that because we are rehabilitation specialists and the patient no longer requires rehabilitation, we can’t really make a difference in their lives, and so we’re rarely needed, if ever. But this couldn’t be further from the truth. Research shows that swallowing problems are frequently observed in patients at the end of life, with incidences as high as 79% in the last 72 hours before death.

These difficulties cause more than just physical discomfort. They lead to emotional distress, frustration, and isolation for the patient, and they increase anxiety for caregivers. Food is deeply ingrained in our culture as a symbol of acceptance, friendship, and community. When the ability to share a meal is lost, the psychosocial costs are high.

In EOL care, our attention shifts from restoring what was lost to supporting what remains. When we conduct a clinical swallow evaluation (CSE) through a palliative lens, our primary goal is to understand, not fix. We clarify what matters most to the patient—be it the pleasure of eating, comfort, or simply reducing distress. Finding solutions to these types of problems can be incredibly rewarding, as they provide a bit of joy to our patients, possibly in the few remaining days or weeks they have left.

The Hard Truth: Is a Feeding Tube Always the Answer? 

When a concerned family member, such as Tom’s daughter, asks for a feeding tube, how should we respond?

It is vital to help families understand the physiological reality of the body as it nears the end of life. As the body slows down, it naturally loses the ability to process food and fluids efficiently. Patients often experience a natural decline in appetite and thirst because their body's need for nutrition and hydration decreases. Reduced eating and drinking at the end of life isn't suffering; it is a natural and expected part of the body's transition. In fact, it can bring certain benefits, such as less swelling, easier breathing, and the release of natural endorphins that create a sense of calm. Our bodies are amazing and full of surprises, and their incredible feats don’t stop just because the person is nearing the end of their life. Listening to the patient and understanding their wants and needs can provide a window into what’s best for that patient, their body, and that particular point in their life.

Don’t believe me? Let’s bring out the research…

A study by McCann et al. found that 63% of patients reported no feelings of hunger or thirst at the end of life, and most thirst symptoms were relieved with minimal oral intake and oral care.

Furthermore, research shows that artificial nutrition and hydration do not improve survival, prevent aspiration, or reduce risks like pressure sores in patients with late-stage dementia. 

Excessive hydration, in particular, can lead to complications such as fluid overload, potentially worsening pulmonary edema, or terminal restlessness.

Medically provided nutrition and hydration via a tube is fundamentally different from the social and relational benefits of traditional eating. Our role is to focus on comfort, dignity, and making care decisions guided by evidence and the patient's wishes. Not to endorse an artificial feeding pump to provide calories when those calories cause more harm than good. 

Choice and control are the keys to a dignified end 

How can we help patients and families navigate this complex shift away from aggressive intervention? The answer lies in open discussion about what the patient values.

Dr. Atul Gawande critiques American medicine for prioritizing aggressive interventions without considering the emotional and physical toll, often neglecting the value of life. His work suggests that less aggressive interventions can both enhance comfort and possibly extend life.

The most powerful tool we have is the tool of conversation. We need to help families ask the fundamental questions: "What level of life is tolerable to you?" and "What matters most to you in your final days?" Dr. Gawande, in his book Being Mortal (a wonderfully enlightening read), tells the story of a man who was asked these fundamental questions. The answer surprised his daughter: “If I can eat chocolate ice cream and watch football on TV, then I'm willing to stay alive.” The most remarkable aspect of this information was that it could serve as a critical guide for all his future medical decisions. “If we do this procedure, what is the likelihood that he will still be able to eat ice cream and watch television?” she could ask his doctor. The answer was often straightforward and could give her peace when making some really tough decisions.

Our role is to facilitate this shared decision-making, ensuring that treatment selection aligns with the patient's goals.

What might this look like for Tom? You sat down with Tom and his daughter. You explained the physiological reality—that his body’s reduced appetite was natural and he was not starving. You clarified that a feeding tube would likely not improve his survival or prevent aspiration, and could potentially increase discomfort.

You helped Tom articulate his own goals, and he echoed a desire for small amounts of food for simple pleasure. You were then able to develop a comprehensive plan focused on comfort and pleasure:

• You maintained strict oral hygiene.

• You taught his daughter how to safely offer tiny sips of his favorite iced tea (using a compensatory strategy) and small spoonfuls of his cherished chocolate pudding, limiting intake to two small pleasure feeds per day.

• You ensured he was positioned comfortably during these social moments, fostering connection.

By focusing on optimizing his swallow function to the best of his ability and identifying his favorite foods, you allowed Tom to find joy and dignity in his final days. His daughter was relieved, understanding that comfort and quality of life were the true priorities, which ultimately led to a more compassionate and fulfilling end-of-life experience for her and her father. We transition the focus from prolonging death to providing a gentle, dignified end.

All concepts and research for this article were taken from the incredible short course by Caitlin Saxtein, MS, CCC-SLP, BCS-S, CBIS. If you’re interested in learning more about this topic, check out the course here.

What have you found most helpful at the end of life? Comment below!