Tracking the Evolution of HPM Science
BY LARRY BERESFORD
One of the most important developments in the growth and maturation of the field of hospice and palliative medicine (HPM) as a recognized medical subspecialty has been the emergence of a research base documenting the outcomes that result from palliative care and the effectiveness of various treatments for the symptoms of serious illness. And for the past 15 years, one of the key forums for sharing that emerging scientific body of knowledge with rank-and-file providers has been the State of the Science plenary session presented at the Annual Assembly of Hospice and Palliative Care.
Each year, this presentation by academic leaders in the field highlights eight significant recent research studies in HPM. The presenters explain how the research was done, what the researchers found, and what practice-changing insights the findings offer frontline providers.
"The field is growing in part because of the increasing quality and quantity of supporting research and scholars whose careers are centered on advancing the science as well as the practice," said Julie Bruno, MSW LCSW, AAHPM's chief learning officer. "What the State of the Science has done is translate the complexities of scientific research into usable pearls for frontline clinicians. It's been very popular for our members, who have realized that this information could actually help them in their practice."
HOW DID STATE OF THE SCIENCE START?
Daniel Fischberg, MD PhD FAAHPM, chief of palliative medicine for the John A. Burns School of Medicine and the Queen's Medical Center, Honolulu, HI, presented the State of the Science session at the Annual Assembly for its first 5 years starting in 2004, the first 2 years by himself and then for the next 3 years, in partnership with Nathan Goldstein, MD FAAHPM, professor of geriatrics and palliative medicine at Icahn School of Medicine at Mount Sinai (ISMMS) in New York. But according to Fischberg, the real mastermind for the presentation was R. Sean Morrison, MD FAAHPM, system chair for geriatrics and palliative medicine at ISMMS.
"The State of the Science session would not have come to be without (Morrison), who proposed the idea and recruited me to give the first presentation. It was his idea to highlight research in the field in a plenary session at the Assembly," Fischberg said. "I chose the articles to present but when I met with (Morrison), he set the tone, asking key questions, which helped tremendously."
Morrison has been a champion of evidencebased medicine in palliative care and author of some of the field's most landmark research, including some studies highlighted at State of the Science sessions. He is director of the Lilian and Benjamin Hertzberg Palliative Care Institute and of the National Palliative Care Research Center, and received AAHPM's Excellence in Scientific Research Award in 2013.
For Fischberg, the State of the Science offered an opportunity to celebrate the diversity of the HPM field, the spectrum of hospice and palliative care, and the diversity of the Academy's membership—along with its colleagues from the Hospice and Palliative Nurses Association. "I aspired to make it celebrate the field in general, not just the research. I didn't want it to just be of academic interest but to highlight things that clinicians could do something about when they got home from the conference," he explained.
"Only a small percentage of our community produces published research. We wanted to share the research and bring it to the patient's bedside by making it understandable to frontline clinicians, demonstrating immediate applicability of the chosen studies to their practice," Fischberg said. "I think it is considered by attendees one of the high points of the Assembly. It's a core value of hospice and palliative care professionals that we want to get better, and the research (shared) can help clinicians make their practice better tomorrow than it is today."
"In the beginning, our field was not as evidence based as we are now," said Goldstein, who has presented the State of the Science a whopping six times. "The State of the Science was designed to highlight the latest science of palliative medicine, but over the years, it has changed as the quality of the science has improved. Now it's all about the evidence: How do we build it? How do we critique it?
"We identify new things that people could apply to their patients, and we try to make it funny," he added. "That's where the use of cartoons came about. What we've found is that if we have fun presenting it, the audience will have fun, too. My goal is that if I can boil it down to a few simple questions—such as, ‘What is the research question being asked?' and, ‘Are the results valid?'—and I can make them laugh, then I've done my job.
"I'm still proud of the presentation I made highlighting Dr. Jennifer Temel's important 2010 study showing the benefits of early palliative care for patients with metastatic non-small-cell cancer.1 That was the year singer Lady Gaga wore a dress made of meat. I said the only thing that got more attention last year than Dr. Temel's research was Lady Gaga's dress," Goldstein said.
"We try to break down the science, not to dumb it down but to make it more accessible. We have explained multivariate analysis, propensity scores, and other complex statistical concepts in a way that nonresearchers could understand and then talk to their colleagues about. And we always had fun doing it," Goldstein added. "For me it was also a great way to make sure I had my finger on the pulse of the current science."
HOW IS IT DONE?
With the body of HPM research and the number of new studies growing year by year, State of the Science presenters use a careful, thorough process to identify, evaluate, and cull published studies down to a manageable number. Articles are then chosen based on the quality of the science, their value to frontline clinicians, and their potential impact on practice.
The process starts with a review of all the articles in the past year reporting original research relevant to the clinical practice of HPM. Some of these are found in the journals specific to the field of HPM, including the Journal of Pain and Symptom Management, AAHPM's official journal; the Journal of Palliative Medicine, the official journal of the Center to Advance Palliative Care; The Journal of Palliative Care; the internationally focused journal
Palliative Medicine; and Pain, the journal of the International Association for the Study of Pain.
In addition, HPM-oriented research increasingly is found in high-impact general medical journals such as JAMA, the New England Journal of Medicine, BMJ, and The Lancet. The review of research article titles and abstracts also has incorporated specialized journals in internal medicine, oncology, pediatrics, geriatrics, nursing, and social work. Examples of topics that have made the short list of studies highlighted at State of the Science include dignity therapy, feeding tubes, acupuncture in chronic obstructive pulmonary disease, palliative care in heart failure, communication skills for medical residents, care interventions for patients with advanced dementia, continuous care in hospice, advance care planning, and goals-of-care conversations.
Other studies have explored the herb and laxative senna in preventing problematic constipation and the role of physical touch in cancer care. Research calling into question the efficacy of standard statin therapy in advanced illness, haloperidol for managing delirium at the end of life, and the use of feeding tubes has garnered a lot of interest.
The plenary presentation includes a summary list of recommendations, noted Nick Dionne-Odom, PhD RN, assistant professor in the School of Nursing at the University of Alabama at Birmingham, and State of the Science presenter from 2015 through 2017. "I tried to avoid ‘do-and-don't' language, which may be a little too forceful in (that) context," he explained. Instead, recommendations typically used the word "consider." "We're very careful about what's on this list and our real takehome messages," he added. "We need the best science undergirding our recommendations. We always need evidence."
A LOT OF WORK
Organizing the State of the Science requires a lot of work, Goldstein said. "We review literally thousands of abstracts and article titles." The current year's presenters are helped in this review process by the prior year's presenters and other mentors in the field. They rate articles based on quality of the science, potential for impact, and appeal to the broadest audience in HPM.
This review and rating process leads to a list of 30 highest-rated abstracts. The articles are then read in their entirety. From these 30 research articles, the eight highest rated and most inclusive of disciplines, practice locations, focus areas, and methodology are chosen for presentation at the Assembly. Then they must be boiled down to a PowerPoint presentation that highlights essential take-home messages— all within 60 minutes.
"It is a lot of work," confirmed Cardinale Smith, MD PhD, associate professor of geriatrics and palliative medicine at ISMMS, who was recruited to co-present the plenary in 2015. "They told me it would be a lot of work, but it pretty much took my entire month of January. But it's fun, exciting, and energizing. For people like me, it rejuvenates and revitalizes our commitment to the work and shows us how others do their work and what we can incorporate into our own practice. Was all that effort worth it? Absolutely.
"We need to bring out the quality of the science, the potential for impact, the appeal to a breadth of interests," Smith said. "We have tried to be specific, to make sure nursing science is recognized, and pediatrics is represented, and there's something from integrative medicine. Then we practice the presentation to where we can do it without looking at the slides—making it as polished as we can."
A lot of slides are shown, and they need to be as precise and pristine as possible, Dionne- Odom added. "We hold multiple meetings to go through them. You may only have one sentence for each slide. Then there's a lot of practice, timing the presentation, editing the slides up to the very last minute." Asked why they put so much work into practicing it, he replied, "We want this presentation to be the highest quality it can be because it reflects the quality of our profession and the respect we think our specialty deserves."
"I was lucky enough to be invited to be one of the presenters in 2017," said Laura Gelfman, MD, assistant professor at ISMMS. "It is a tremendous honor to be asked and a tremendous opportunity. The process of going through and identifying articles is a big education in itself. There is a lot of work in a very iterative process of boiling the long list down to eight."
Gelfman and her co-presenter Heather Coats, PhD MS APRN-BC, palliative care nurse practitioner and assistant professor at the University of Colorado College of Nursing, spoke to each other about planning their presentation every other week for 6 months. "There are multiple layers to the conversation and to the process," Gelfman said. "We are mindful of honoring the diversity of groups represented at the Assembly. I feel like I was asked to join a special club—a supportive network of people who have gone before and who want to see the younger generation excel. I am grateful for that."
Coats completed her PhD in nursing from the University of Arizona and did a postdoctoral fellowship at the University of Washington. "I was being groomed for research, with an opportunity to talk across the interprofessional field of palliative care." She was invited to do the State of the Science plenary starting in 2017. "This opportunity is typically given to relatively junior faculty who are launching their career trajectory. From a practical standpoint, they are more likely to have the time required for developing the presentation than more established faculty," she said.
"(Gelfman) and I reach out to our mentors and other leaders to make sure that the research we are highlighting represents the state of the science. I try at every step to keep the interprofessional focus front and center," Coats said. "Last year, as I walked offstage, a nurse came up to me and said, ‘I'm going to take all of your presentation back to my own clinical practice. Thank you for presenting it in a way I could understand.'"
THE NEXT STEP IN PALLIATIVE SCIENCE
But 1 hour is no longer enough to represent the state of the burgeoning science of HPM, Goldstein said: "How exciting that is. It would have been inconceivable a decade ago." A 1-hour State of the Science plenary by Coats and Gelfman was held at the 2019 Annual Assembly in Orlando, but AAHPM's commitment to highlighting the growing body of HPM research and the success of the annual State of the Science plenary have driven the planning of a new meeting solely devoted to research, scheduled for March 20–22, 2020, coinciding with the Annual Assembly in San Diego.
This 2-day research symposium's Steering Committee is co-chaired by Morrison and Jean Kutner, MD MSPH FAAHPM, chief medical officer at the University of Colorado Hospital and co-director of the Palliative Care Research Cooperative. Dionne-Odom and Abby Rosenberg, MD, a pediatric oncologist at Seattle Children's Hospital, are co-chairing the symposium's Program Committee. "Much of what we have tried to do in the State of the Science will infuse the full conference," Dionne-Odom said.
Dionne-Odom recalls his first Assembly in 2011. "I thought the State of the Science was one of the coolest sessions I'd ever seen. A few years later, in 2015, Jay Horton asked me if I'd ever consider doing it. I had just finished my PhD, so the timing was perfect. Only after I got involved did I come to appreciate how critical this function is to identify articles representing the breadth and scope of where we are scientifically," he explained.
"We will want hardcore researchers on stage at the research symposium," Bruno said. "More importantly, we want to create an environment where researchers can network and make connections, get excited, and further their projects. The majority of HPM science has been presented at our conferences in posters and 15-minute sessions. We are now trying to put rocket boosters on to advance the field's science."
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–small cell lung cancer. New Engl J Med. 2010;363(8):733–742.