Lessons from the Literature

Volume 23, Number 5: May 2022

Media Watch: Areas Ripe for Research

The articles below are selected from issues of Barry R. Ashpole’s Media Watch.

Community-Based Participatory Research and Public Health Palliative Care

Progress in Palliative Care | Online – 12 February 2022 – While much has been developed and refined in terms of theoretical basis and practice methods, there is an increasing need to consider the research agenda and methods employed to evaluate outcomes and strengthen the evidence base for public health approaches to palliative and end-of-life care. In particular, promoting the participation of underserved and vulnerable populations and understanding the influence of power structures on their representation in research is imperative. There is scope to complement traditional research methodologies with new public health approaches that are participatory and directly informed by communities’ lived experience, expressed needs, and aspirations for care.

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Family Carers Research: What progress has been made?

Palliative Medicine | Online – 17 February 2022 – The provision of end-of-life care in the home continues to be a priority and is where the majority of family caregiving takes place. This may become even more important in a post-pandemic environment, where shifts in place of death may be influenced by restrictions on visiting or limited resources in institutional settings such as hospitals and hospices. The increase in digital health interventions may offer new forms of support for carers or, alternatively, may exacerbate their feelings of isolation; we do not yet know. Whilst the increase in research activity is encouraging; unless gaps in diversity and rigorous intervention and implementation research are addressed, there is a significant risk needs of numerous carers will not be adequately met.

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Improving Care of People with Serious Medical Illness—An economic research agenda for palliative care

JAMA Health Forum | Online – 28 January 2022 – Policymakers and the U.S. public are largely aligned on the need to improve care for patients with serious illness while curtailing wasteful spending and easing burdens on family caregivers. By one estimate, the value of unpaid U.S. family caregiving for people with serious illness exceeds $300 billion annually. Studies to date suggest that palliative care (PC) could help increase the value, defined as some combination of better quality and lower costs, of U.S. healthcare spending. PC…improves care quality. However, without robust economic evidence to calculate the value equation, including costs and benefits, the current paradigm of high costs, poor outcomes, and growing inequities will persist for people with serious illnesses.

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Also of interest: The promise of big data for palliative and end-of-life care research

Editor’s note #1: In an opinion piece published in Ehospice on April 24, Dr. Julian Abel outlines “four major blind spots of palliative care.” The fourth is research. He writes, “The narrow professional paradigm of palliative care is equally pervasive in research. Research is dominated by using single outcomes, proving the link between cause and result. This is a very limited perspective on assessing what matters most to people and what makes the biggest difference.”

Editor’s note #2: Barry Ashpole recently announced the end of Media Watch in a thought-provoking letter, attached below, that readers and researchers may be interested in.

Fifteen years and 750-plus weekly issues later, it's time to "close the books" on Media Watch. .

As I approach my 80th year, I must admit to running out of steam. The very difficult decision to cease publication has not been taken lightly. A multitude of factors have influenced this decision, not the least of which is the disturbing repetition of subject matter when comparing the content of Media Watch in the early years of publication with the content of the past two or three years. This begs the observation: “What real progress—particularly at the bedside, and from the perspective of those living with a terminal illness—has been made in effecting change in the terminal illness experience?”

I anticipate some harsh criticism of this observation, but maybe a few voices of shared concern. Please bear in mind that I have been monitoring the literature and the news media on an almost daily basis for much longer than most clinicians and researchers currently active or with an expressed interest in improving the quality of end-of-life care. This gives me a fairly unique perspective. Add to this my professional experience as a communications consultant and educator, which dates from 1985.

Any future efforts will focus on underserved and vulnerable populations. How that might manifest is still under consideration.

My heartfelt thanks to those who have, over the years, expressed appreciation for my efforts.

—Barry Ashpole, April 28, 2022

Media Watch is international in scope and distribution; view current and back issues here.

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