For the month of December 2020, we have focused the wAGING change blog on dying with dignity, considering the topic primarily from the perspective of people who are thinking about their own dying process or that of a loved one. We occupy an especially poignant context for this conversation, however, and one that presses us to hear and understand other voices as well. As this post enters the online world, the number of deaths linked to the COVID-19 pandemic has topped 335,000 in the U.S. alone, and worldwide the death toll is approaching 2 million.
These are, it feels safe to say, not dying processes that were envisioned a year ago, nor ones that could be carefully planned and discussed with loved ones and trusted healthcare providers. Death from the Sars-COV-2 virus and its complications have forced the dying into spaces where the opportunity to state desires around the end of life, or the chance to impart a final important message, have been compromised by physical distance as well as repercussions of the virus. On social media platforms, stories abound of health care providers – nurses, respiratory therapists, social workers, doctors and others – acting as surrogate family and/or connecting the dying to loved ones remotely through various electronic means of communication.
Communication and dying with dignity….what is the connection?
Researchers, thought leaders, and practitioners in palliative care (see suggested reading below) concur that effective communication is key to affording and preserving the dignity of dying persons and their care partners. Some even argue that communication – not procedures or technique or expertise – is the foundation of caring in the context of dying. What does this look like in practice? Consistently mentioned in both research findings and best practice recommendations are several key components:
- Listening, to the point that the dying person feels heard
- Information exchange that is driven by the dying person, in the amount and at the time desired
- Communication that foregrounds the essence of the dying person as presented by them and/or the care partners
- Support for decision making driven by the dying person
- Clinicians with a high level of self-efficacy in centering communication on the dying person
Combining these principles with the advice shared in our earlier post this month featuring older adults’ voices on end-of-life topics, there is a clarion call for effective communication around death and dying. As we begin a new year when so many cannot, let it be a reminder to us all not to shy away from this subject, but to communicate…early, often, and authentically.
Cu Rejnö, Å., & Berg, L. K. (2019). Communication, the Key in Creating Dignified Encounters in Unexpected Sudden Death – With Stroke as Example. Indian journal of palliative care, 25(1), 9–17. https://doi.org/10.4103/IJPC.IJPC_117_18
Justin J. Sanders, Joanna Paladino, Erica Reaves, Hannah Luetke-Stahlman, Rebecca Anhang Price, Karl Lorenz, Laura C. Hanson, J. Randall Curtis, Diane E. Meier, Erik K. Fromme, and Susan D. Block. Quality Measurement of Serious Illness Communication: Recommendations for health systems based on findings from a symposium of national experts. Journal of Palliative Medicine Jan 2020.13-21. http://doi.org.libproxy.lib.unc.edu/10.1089/jpm.2019.0335
Kennedy G. (2016). The Importance of Patient Dignity in Care at the End of Life. The Ulster medical journal, 85(1), 45–48. PMCID: PMC4847835 PMID: 27158166
PLEASE NOTE: wAGING CHANGE will be on hiatus until January 18, 2021 due to website upgrades