Volume 23, Number 6: June 2022

An interview with Media Watch’s Barry Ashpole, to mark the end of what began as a teaching aid for his university students. Drs. Lukas Radbruch and Eduardo Bruera were invited to comment. Their thoughts appear at the end of this story.

Palliative Care Research and Practical Application: Have they stalled?

By Alison Ramsey
IAHPC Newsletter Editor

When Barry Ashpole sent a letter to Media Watch users in April, signalling its end after 15 years, he broke his rule against expressing personal opinions by noting the “disturbing repetition of subject matter” and asked “What real progress has been made at the bedside?”

“The quality of research has deteriorated significantly,” he noted in our interview.

Palliative care, he added, has not been well served despite a flourishing number of journals specific to the topic, because too many fail to ensure that the research is rigorous. “Predatory journals that get paid to publish is a huge issue.” Research is too often based on too few participants, and it can be repetitive because authors have failed to do a comprehensive search before embarking, he said.

Who will spread the news?

Even when important findings are published, Ashpole said, there is no mechanism to ensure that they are disseminated widely or championed in ways that could lead to their being adopted in day-to-day practice. And some show up “in the oddest places,” where palliative care advocates, associations, governments, and future researchers may never find them.

These drawbacks are hugely frustrating to communication experts like Ashpole.

“What happens to the articles? To my mind, getting the information out is the responsibility of the [palliative care] associations. And while many have websites, several don’t add fresh information.

“When a really important study is published, the people who see it are the converted. How do we reach the unconverted?”

Who is doing the work?

An equally critical problem hampering change is the fact that palliative care advocacy relies heavily on individuals, many of whom already have full-time jobs in the field.

“Our Achilles heel, as it is for a lot of organizations, is how to sustain communication and education initiatives. Leadership in palliative care is often left to individuals. We have broad consensus on improving end-of-life care and awareness, but efforts are still very fragmented.”

As an example of fragmentation: “Canadian Virtual Hospice is an incredible initiative that is not widely promoted, even by the national association.” And of reliance on individuals in the medical profession: “They get attention for a while, then it fades.”

Ashpole also gave an example of one person’s impact in Canada, where he lives: “Gifford Jones, who is very outspoken on cancer pain, ran ads in the Globe & Mail [a national newspaper] criticizing palliative care methods [including the lack of opioids—specifically, heroin]. He was bold and heavily criticized, but he woke people up. He got the federal government to create a committee.” That committee investigated assisted suicide and came down against it, but heavily endorsed palliative care, said Ashpole, an endorsement that has been repeated by more than 10 similar reports since. Action, however, is lagging.

Time to pounce!

There’s one specific issue that Ashpole would love to see addressed: the quality of long-term, institutionalized care.

“It’s a huge issue…that has been pushed aside. I could walk in somewhere and know immediately if it is a place I’d like to be (with beautiful surroundings, caring staff, and happy residents), or would not like to be. We’ve known what to do for a long time. It’s another issue that palliative care should really pounce on.”

Perhaps he will tackle the topic in his future endeavors. He may be 79 years old, but Ashpole isn’t ready to retire. Instead, he wants to sharpen his focus.

“I haven’t thought this through but, if anything, I want to focus attention on underserved and vulnerable populations.”

Limitations of Controlled Trials Severely Curtail Research

By Lukas Radbruch, MD
IAHPC Chair of the Board

For a really long time, Barry Ashpole has provided an insight on palliative care research with Media Watch, compiling articles that raise curiosity, that palliative care professionals should know about, and that may challenge one's attitudes and beliefs. I am very sorry it has ended!

Barry expresses concern about small study populations, repetitive studies not providing new input, and a general deterioration of the quality of palliative care research. This raises an interesting point: the discrepancy between quality and quantity of palliative care research. We are seeing a huge increase in the number of palliative care research papers: probably most of us can’t even read all of the new articles that we find interesting. At the same time, the number of clinical trials is not increasing, and I can't even remember the last time I found a new controlled trial for a pharmacological intervention in palliative care.

However, I don’t believe that this is only due to predatory journals soliciting articles in order to increase profits. Drug trial regulations have become very complex in recent years in many countries. When I began palliative care research years ago, we could simply draft a study plan based on our clinical practice, get approval by the institutional review board, then begin. Today, the process to start a new study takes months and a small fortune: without funding, we cannot run clinical trials. Small study populations may be a problem, but the quest for larger recruitments has led to some palliative care research being outsourced to oncology settings. I am afraid that palliative care research today risks neglecting the most vulnerable, the severely ill, and those close to needing treatment in palliative care units or other specialized palliative care settings. For these patients, adaptations of the study methodology are needed, such as enriched enrolment studies or N-of-1 trials. These settings may also require proxy assessments for outcome measurement, as patients often have severe physical and cognitive impairment. However, review boards would often refuse this methodology, and thus would not include such research studies in their evaluations.

Though my reasoning is different, I agree completely with Barry that we have more research publications, but less relevant results. We urgently need to discuss how to overcome this, as research should benefit patients, not just the authors or publishers. Thanks to Barry for starting this discussion!

‘Person-centered care is losing badly to disease-centered care’

By Eduardo Bruera, MD
Former IAHPC Chair of the Board

Barry Ashpole has made a gigantic contribution to palliative care, both in Canada as well as globally. His regular contributions of new research findings were read and regularly shared by thousands, especially those with limited access to medical libraries and online publications. Media Watch was a regular feature for palliative care connoisseurs, and a wonderful way to introduce our field to newcomers. I particularly enjoyed his Canadian fairness and civility in the dissemination of information.

His comments emphasize a sad truth: person-centered care is losing badly to disease-centered care, and suffering is not a priority for major hospitals, universities, and granting agencies. As a result, there is very limited research and few new developments for clinical care of suffering. Instead, there is a trend to move suffering, dying persons to lower levels of care or assisted death.

I am personally grateful for Mr. Ashpole’s great contribution, and also to IAHPC and all those who will continue to advocate for a better balance between disease and person-oriented research and education.

Editor’s note: Barry Ashpole contributed a section on “Communications with the public, politicians, and the news media” in the 5th edition of the Oxford Textbook of Palliative Care. He also coauthored “A Journalist’s Guide to Writing Health Stories.”

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