I first heard Marianne present her research in 2024, and I was struck by several powerful insights.
In this blog post, she explores how healthcare teams can overcome the challenge of understanding patients who have little or no ability to communicate verbally.
Enjoy Marianne’s research, writing and recommendations.
Kath
Marianne Sofronas, RN, PhD
Assistant Professor/Faculty of Health Sciences
School of Nursing /University of Ottawa
and
Director of Research
Canadian Palliative Care Nursing Association
https://cpcna.ca
As a researcher, my research has focused on people with neurologic diseases. I define neurologic diseases as: any structural disorder affecting the brain, spinal cord, or cranial and peripheral nerves. People living with neurologic disease face stigma, discrimination, and health inequities due to changes in function, chronic pain and other symptoms that can be difficult to treat and manage. Neurologic disorders also share the common feature of being largely incurable and progressive; they reduce life expectancy and often have long periods of dependence on others. This makes palliative care an important component of care provision and planning.
While researching people who are dying from neurologic disease, I witnessed an incident that highlighted how we respond to voices that are difficult to understand. Changes in function, cognition, and communication often accompany advancing neurologic disease. These changes also challenge our care practices, especially in palliative care where so much of our work relies on verbal communication. How then can we deliver excellent, compassionate care when verbal exchange, when communicating by “talking” is not a guaranteed possibility?
When Suffering Is Overlooked
One day on the ward, I heard a person with neurologic disease wailing in pain as staff provided care. A nurse, in a voice that could be heard throughout the unit, told them, “You need to use your words, I can’t help you if you are screaming!” The problem: was that this person struggled with word finding at baseline. Asking them to communicate with words while in distress was not a fair expectation. The nurse’s demand showed they didn’t acknowledge the person’s suffering; the nurse also didn’t recognize their responsibility to alleviate this suffering. It was a humiliating moment for the person –chipping away at their dignity and personhood and diminishing trust in the care team.
Beyond Words: Listening Differently
The problem with this person’s wails wasn’t that they wouldn’t use words. Wails and cries were the only way they had left to communicate distress. The true problem was that those who could help were simply not listening.
Voices vary with our ability to hear them.
Bridging the Gap in Verbal Communication
Researchers working with vulnerable populations caution us against assuming that verbal communication is the only way we can access the experiences of others. Scholars studying dementia, homelessness, and severe mental illness have noted that several aspects of typical communication, such as narrating a story with a logical structure, drawing meaning, and reflecting on impact, are often missing from accounts of people in highly vulnerable circumstances. With advancing neurologic disease, communication challenges tend to get worse, not better. It’s therefore the responsibility of clinicians and caregivers to bridge the gap between what people in their care are trying to communicate, and what ends up being expressed.
What Makes a “Good Death”
Studies on people’s perceptions of a “good death” identify relief from pain and distressing symptoms as paramount. Beyond that, dying people prioritize relationships with loved ones, the ability to talk freely about death, and reflecting on life to find meaning in both life and death. So many of these crucial elements become out of reach for people who communicate differently. This makes planning and orchestrating a “good death” even more complex and uncertain.
Remaining Attuned to Voices that are Difficult to Hear
As one nurse colleague reflected, caring for people with neurologic disease who have lost the ability to communicate, is “like a guessing game: you need to figure out the person’s needs through their behaviours. When families can tell you what their personality was like before their diagnosis, you can make connections with what is happening now. You need to be a detective.”
As healthcare workers caring for people with neurologic disease, we must actively seek other ways to listen, to see and know the people in our care, and to reaffirm their personhood. Some families develop ingenious nonverbal communication methods, while others need support to get there. The most important element is remaining attuned to voices that are difficult to hear.
photo is from: vistacreate
