The Center to Advance Palliative Care (CAPC) estimates that approximately 6 million Americans require palliative care services, of nearly 90 million Americans who currently live with serious illness, with this latter number expected to more than double in the next two decades (CAPC, 2014). This projected increase is related to the rapid aging of our nation's population, with the 2010 census reporting more Americans being older than 65 years than any previous recorded census (U.S. Census Bureau, 2011). With the many advances in modern medicine, adults and children with complex, life-limiting conditions are living longer. This raises an important issue about whether this success at improving quantity of life is complemented by a parallel improvement in the quality of life (QoL) and dignity of patients and families, when facing serious illness. Palliative care is holistic, interdisciplinary care for persons with serious illness, with its goals to manage symptoms, mitigate undue suffering, enhance comfort, and improve QoL for patients and their families (Institute of Medicine, 2015).
Ira Byock, a leading palliative care physician in the United States, in his best-selling book, The Best Care Possible, discussed that most Americans fear death and have an aversion to discussing dying and the end of life (EoL) to such an extent that “we make dying a lot harder than it has to be” (Byock, 2012, p. 1). This issue of Topics in Language Disorders is about the important role speech–language pathologists (SLPs) have in providing palliative care services as members of interdisciplinary teams, the need to better prepare SLPs to provide palliative care services, and to consider patients' rights to access palliative care services as well as disparities in such access.
The issue consists of five articles, with authors of the first two articles focusing on the knowledge, perceptions, and training of speech–language pathology graduate students about end-of-life care (EoLC) and palliative care. The third article sheds light on a human rights perspective on understanding access to palliative care, including the importance of examining disparities in access to and utilization of palliative care for culturally diverse groups. The last two articles focus on an SLP's precise role in providing direct palliative care services to persons with communication disorders and on supporting communication between a client, their family, and their health care team.
In the first article of the issue, Stead et al. (2020) provide readers a thoughtful review of the history and practices of palliative care education across health care disciplines. This is followed by their presentation of a 4-week pilot curricular module on EoLC nested within a course on communication and aging. They designed and implemented this module while tracking the self-reported learning outcomes of SLP graduate students. Following their EoLC module, graduate students in their sample reported being significantly more familiar with EoL issues and with the SLP scope of practice related to EoLC, while reporting significantly greater comfort in discussing EoLC issues.
The second article by Mahendra and Alonso (2020) is a report of SLP students' knowledge and familiarity with palliative care and related concepts of hospice, advance directives (ADs), advance care planning, and QoL. These authors drew inspiration from a learner-centered education framework (Weimer, 2013) that emphasizes actively engaging learners in the hard work of learning and on having students reflect about what they know and do not know. Results of this study revealed that 55% of SLP students had an accurate and complete understanding of the concept of QoL. However, the majority of students had many misconceptions about palliative care and the majority did not accurately understand palliative care (64%), ADs (66%), or hospice (59%).
In the third article, Mukherjea et al. (2020) introduce a social justice perspective on the universal right to health care and, by extension, the right to palliative care. They present basic principles of a human rights framework with implications of these principles for palliative care service delivery and for considering gaps in the literature for understanding how diverse groups may access and utilize palliative care. As an example, they present results of a literature review on how Asian American communities access and utilize palliative care. Their findings reveal scant research on culturally responsive palliative care for Asian American communities, inequities in access to palliative care, and considerable variability in awareness and utilization of palliative care. The authors point out the need to consider a collectivist orientation to health care and EoL decision-making when working with Asian American clients.
Pollens (2020) provides a robust discussion of the rationale, clear advantages, and specific case vignettes of an SLP's involvement in providing skilled palliative EoLC services. She anchors her discussion in the four key components of quality palliative care proposed by the World Health Organization. These four components include providing relief from symptoms, providing communication or other supports for clients, integrating psychological and spiritual elements of care, and providing supports to facilitate coping by family members.
Finally, Mahendra and Tadokoro (2020) detail the longitudinal progression of a woman with the nonfluent variant of primary progressive aphasia (nfvPPA). They present the nature and outcomes of individual and group interventions for communication and life participation that were offered to this client and her family over a 3-year period. The authors also address the value of 10 guiding principles of palliative care for informing the plan of care and the selection of interventions for this person with nfvPPA. They demonstrate the value of SLP-led interventions to help maintain and support everyday communication, decrease social isolation, and support the emotional well-being of persons with primary progressive aphasia and their families.
Taken together, this collection of articles on palliative care draws attention to the growing need to provide robust training in palliative care to SLPs, as well as to the impactful roles SLPs can play on palliative care teams. Speech–language pathologists actively support client communication and life participation, ensure skilled and sensitive communication about difficult choices, protect autonomy and dignity, provide safety and comfort, and can optimize QoL for persons with serious health conditions. Indeed, the very goal of palliative care is not merely about a good death but rather as good and meaningful a life as is possible until the very end.
—Nidhi Mahendra, PhD, CCC-SLP
Byock I. (2012). The best care possible: A physician's quest to transform care through the end of life. Penguin Group Inc.
Institute of Medicine Committee on Approaching Death: Addressing Key End-of-Life Issues. (2015). Dying in America: Improving quality and honoring individual preferences near the end of life. The National Academies Press.
Mahendra N., Alonso M. (2020). Knowledge of palliative care and advance directives among speech–language pathology students. Topics in Language Disorders, 40(3), 248–263.
Mahendra N., Tadokoro A. (2020). Nonfluent primary progressive aphasia: Implications of palliative care principles for informing service delivery. Topics in Language Disorders, 40(3), E7–E24.
Mukherjea A., Ali S., Smith J. A. (2020). A human rights perspective on palliative care: Unraveling disparities and determinants among Asian American populations. Topics in Language Disorders, 40(3), 278–296.
Pollens R. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders, 40(3), 264–277.
Stead A., Dirks K., Fryer M., Wong S. (2020). Training future SLPs for work in end of life & palliative care. Topics in Language Disorders, 40(3), 233–247.
U.S. Census Bureau (2011). The older population: 2010 census briefs. http://www.census.gov/prod/cen2010/briefs/c2010br-09.pdf
Weimer M. (2013). Learner-centered teaching: Five key changes to practice (2nd ed.). Jossey-Bass.