Episode 58: End of Life Care and the SLP with Amanda Stead, PhD, CCC-SLP
Dr. Amanda Stead introduces issues related to end-of-life care for the SLP in this episode. Dr. Stead talks about heavy topics with a mixture of frankness, authenticity, honesty, and passion. Which is exactly how each of us need to approach this conversation with patients and caregivers. Amanda points out that this can be an uncomfortable experience for SLPs, but the more we engage in this space, the better value we can bring to these patients and their loved ones. As SLPs, we have a significant role to play as the patient can be experiencing issues related to all three key areas that we address: feeding/swallowing, communication, and cognition. Let’s get comfortable with uncomfortable spaces and improve our ability to connect with and deliver exceptional care.
topics covered:
The role of the SLP in developing strategies for family and team across cognition, communication, and feeding/swallowing.
Foundational knowledge and skills for SLPs involved in end of life care.
Typical settings, diagnoses, patient populations.
Having critical conversations with patient and caregivers.
Goals of care for the dying patient.
Key professionals involved in end-of-life care.
This podcast is accompanied by an audio course offered for ASHA CEU credit by SpeechTherapyPD.com
Resources mentioned in the episode for you to dig deeper:
Books:
Being Mortal: Medicine and What Matters in the End by Atul Gawande. In his bestselling book, Atul Gawande, a practicing surgeon, examines limitations and failures – in his own practices as well as others’ – as life draws to a close. And he discovers how we can do better. He follows a hospice nurse on her rounds, a geriatrician in his clinic, and reformers turning nursing homes upside down. He finds people who show us how to have the hard conversations and how to ensure we never sacrifice what people really care about. Riveting, honest, and humane, Being Mortal shows that the ultimate goal is not a good death but a good life – all the way to the very end.
On Living by Kerry Egan. “As a hospice chaplain, Kerry Egan didn’t offer sermons or prayers, unless they were requested; in fact, she found, the dying rarely want to talk about God, at least not overtly. Instead, she discovered she’d been granted a powerful chance to witness firsthand what she calls the “spiritual work of dying”—the work of finding or making meaning of one’s life, the experiences it’s contained and the people who have touched it, the betrayals, wounds, unfinished business, and unrealized dreams. Instead of talking, she mainly listened: to stories of hope and regret, shame and pride, mystery and revelation and secrets held too long. Most of all, though, she listened as her patients talked about love—love for their children and partners and friends; love they didn’t know how to offer; love they gave unconditionally; love they, sometimes belatedly, learned to grant themselves.”
A brief NY Times article review of Kerry Egan’s book. A 36 minute interview on NPR’s “Fresh Air” show.
Documentaries:
A Good Death (Amazon): What do you do when you're told you're going to die? In this heart-rending documentary four Australians face this very question, as they search for that elusive good death.
Extremis (Netflix): Witness the heavy emotions that come with end-of-life decisions as doctors, patients and families in a hospital intensive care unit face harrowing choices.
End Game (Netflix): End Game weaves together three stories of visionary medical providers who practice on the cutting edge of life and death, helping to change the way we think about both: the palliative care team at UCSF Medical Center, the most sophisticated acute care hospital in Northern California; Zen Hospice Project, a Buddhist-inspired end-of-life residence in a classic San Francisco Victorian; and B.J. Miller, M.D., a physician who understands suffering first-hand (he lost three limbs in an accident when he was 19) and who has worked with both UCSF and Zen Hospice. For most people, the very words “hospice” and “palliative care” are nonstarters—code words for giving up. This core group of caregivers in San Francisco sees it differently. They are dedicated to relieving suffering, and to changing the way we think about—and make choices about—how we live our lives as we near life’s end. Their commitment is vividly embodied in their interactions with their terminally ill patients. These intimate and often highly charged emotional moments—with caregivers, patients, and patients’ families and loved ones—are at the heart of End Game.
Journal Articles and more:
Discussing End of Life Care: An Opportunity by Amanda Stead and Caitlin McDonnell
End-of-Life Issues in Speech-Language Pathology: TONs of resources on ASHA’s webpage, check it out!
End of Life Resources and References: straight up list of websites, journal articles, books, etc. on ASHA.org.
Swallowing Management in Palliative Care: In a recent live chat, ASHA online dysphagia conference presenters Brenda Arend and Kate Krival talked about dysphagia in palliative care.
*hitting a paywall? Can’t access the research? Try Google Scholar. Click the link in the right hand column for access to the full article, if available.
Dying patient’s Bill of Rights
The Dying Person has the right to: • Be treated as a living human being until death • Maintain a sense of hopefulness, however changing its focus may be • Be cared for by those who can maintain a sense of hopefulness, however changing this might be • Express feelings and emotions about approaching death in their own way • Participate in decisions concerning their care • Expect continuing medical and nursing attention even though “cure goals” must be changed to “comfort goals” • Not die alone • Be free of pain • Have their questions answered honestly • Not be deceived • Have help from and for their family in accepting death • Die in peace and dignity • Retain their individuality and not be judged for their decisions, which may be contrary to the beliefs of others • Discuss and enlarge their religious or spiritual experiences, regardless of what they may mean to others • Expect that the sanctity of the human body will be respected after death • Be cared for by caring, sensitive, knowledgeable people who will attempt to understand their needs and will be able to gain some satisfaction in helping them face death (Matzo & Sherman, 2001)
Matzo, ML, Sherman, DW. (2001). Palliative care nursing: ensuring competent care at the end of life. Geriatric Nursing, 22(6), 288-293.
Amanda Stead, Ph.D., CCC-SLP is an associate professor at Pacific University in Forest Grove, Oregon. Her research is in the area of language change in healthy aging and dementia and evidence based education is the area of geriatrics, End of life care, and professional issues.
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