Category Archives: Palliative care
Chris Feudtner, MD, PhD, MPH, is a pediatrician, epidemiologist, historian, and ethicist at The Children’s Hospital of Philadelphia (CHOP) and professor of pediatrics at the University of Pennsylvania. He is an alumnus of the Robert Wood Johnson Foundation Clinical Scholars program.
Living in a situation beyond almost-unbearable imagination: This is the reality that children with life-threatening conditions and their parents confront, and that the rapidly emerging field of pediatric palliative care seeks to address with compassionate and specialized medical and psychosocial expertise.1
A bit of background: just over half of the 45,000 children who die in the United States each year are infants, who often die within hours of their birth. Others die after traumatic injuries, usually quite suddenly. And a substantial proportion of the children die after a prolonged illness trajectory, due to a wide range of chronic conditions, ranging from cancer to congenital anomalies to neurodegenerative diseases. Most of these children spend days or weeks in hospitals, with frequent hospitalizations, and with the likelihood of hospitalization going up as the condition worsens.
To meet the needs of these patients and their families, many children’s hospitals in the United States have created dedicated pediatric palliative care teams. These interdisciplinary teams—composed of physicians, nurses, social workers, child life and art therapists, chaplains, and other specialists—pursue three core tasks on behalf of these patients. First, they manage pain and other symptoms, using both pharmacologic and complementary methods. Second, they support patients and parents in the often overwhelming process of receiving medical information and making treatment decisions. Third, they help coordinate care both across specialty disciplines within the health system, and across different sites of care, from the hospital setting to home or other residential sites, often in partnership with hospice or home nursing. All of this is done in coordination with the patient’s primary medical or surgical team2—palliative care adds and never subtracts.
Adopting best practices from home-based hospice care in the inpatient environment can reduce suffering at the end of life, according to a study published in the Journal of General Internal Medicine. Researchers at the Birmingham Veterans Affairs Medical Center and the University of Alabama at Birmingham said the study is the first to show that palliative care techniques usually used in home settings can have an impact on those who die in hospitals.
The Best Practices for End-of-Life Care for Our Nation’s Veterans (BEACON) trial was conducted at six Veterans Affairs Medical Centers from 2005 to 2011 and involved training more than 1,620 staff members in aspects of care for more than 6,000 dying patients. Although focused on veterans, the study can have a wider impact, researchers said, because most Americans will die in the inpatient setting of a hospital or nursing home.
“We only die once, and therefore there is only one opportunity to provide excellent care to a patient in the last days of life,” wrote lead author F. Amos Bailey, MD, director of the Safe Harbor Palliative Care Program at the Birmingham Veterans Affairs Medical Center, professor in the Division of Gerontology, Geriatrics and Palliative Care at the University of Alabama at Birmingham School of Medicine, and a 2000 Robert Wood Johnson Foundation Community Health Leader. “The keys to excellent end-of-life care are recognizing the imminently dying patient, communicating the prognosis, identifying goals of care, and anticipating and palliating symptoms. Since it is not possible to predict with certainty which symptoms will arise, it is prudent to have a flexible plan ready.”
Human Capital News Roundup: The cost of disposable diapers, toxins in fish, fast food calories, and more.
Around the country, print, broadcast, and online media outlets are covering the groundbreaking work of Robert Wood Johnson Foundation (RWJF) leaders, scholars, fellows, alumni, and grantees. Some recent examples:
WNYC in New York City broadcast an interview with RWJF Community Health Leader Joanne Goldblum about families reusing disposable diapers due to economic hardship. Goldblum, who is founder and executive director of the National Diaper Bank Network, conducted a study that shows how the practice leads to a range of problems for families living in poverty.
When it comes to digital health and new ways to deliver care, the focus should be on the consumer and improving outcomes, not on the technology, according to experts at a recent Connected Health Symposium in Boston, Massachusetts. Mobile Health News reports that Propeller Health (formerly Asthmapolis) CEO David Van Sickle, PhD, MA, an RWJF Health & Society Scholars alumnus, pressed for greater emphasis on outcomes. Read more about Van Sickle’s work here and here.
An American Thoracic Society panel of experts, including RWJF Interdisciplinary Nursing Quality Research Initiative (INQRI) grantee Richard Mularski, MD, is calling for better care for those who suffer severe shortness of breath due to advanced lung and heart disease. The Annals of the American Thoracic Society reports that the panel recommends patients and providers develop individualized actions plans to keep episodes from becoming emergencies, Medical Xpress reports.
Martin Schiavenato, PhD, RN, is an assistant professor at the University of Miami School of Nursing and Health Studies, and a Robert Wood Johnson Foundation Nurse Faculty Scholar. This is part of a series of posts looking at diversity in the health care workforce.
It is human nature. The old adage “opposites attract” is a myth; in fact, the contrary is true. We feel more comfortable with and welcome those who share in our definition of “us” than not. Accordingly, this also forms the basis to how we define “them.” It is intuitive that we feel connected to and prefer those who share in what we believe to be our experience, and that we are suspicious and even spurn those who we feel do not. This phenomenon is referred to by psychologists as “in-group bias.”
"When it comes to providing best clinical care, race and culture matter."
In my field of pain research, there is ample documentation of how clinician preferences impact the care of patients. Clinicians better address pain management in patients who “match” their reference group or their preferences more closely. For example, better pain care is given to patients who speak the same language, are of similar socioeconomic status, or even those considered more attractive to the clinician. Subtle cues from the patient—their physical appearance, the circumstances that brought them to seek care, their behaviors and expressions—all will have a consequence on the nature of the care that they will receive. Thus, the race and culture of the clinician have the potential to be significant contributors in the quality of care that a patient will receive. This inherent tension between “us” and “them” may be particularly relevant in a country with a history of institutionalized racism.
It’s made of glass, and it glows and changes colors—but it’s not a crystal ball. It’s an “orb” and it’s poised to revolutionize the way providers assess and treat pain in premature infants.
Martin Schiavenato, PhD, RN, a Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholar, has invented a revolutionary tool to assess pain in premature infants and potentially protect them from its negative developmental effects.
The glass orb translates behavioral and physiological signs of pain in infants—such as body gestures and physiological signals like heart rate metrics—into a “real time” visual display of pain levels. It changes color depending on the subject’s pain levels, giving clinicians readouts on infant pain.
The Robert Wood Johnson Foundation (RWJF) Interdisciplinary Nursing Quality Research Initiative (INQRI) will host a webinar on January 31, 2013 as part of a series featuring all of the INQRI's grantee teams focused on translating research into practice. The webinar will feature INQRI Investigators Susan Beck, PhD, APRN, FAAN, and Nancy Dunton, PhD, FAAN, discussing their research on dissemination and implementation of evidence-based methods to measure and improve pain outcomes.
The webinar will be held from 2-3 p.m. EST.
By Sally Welsh, MSN, RN, NEA-BC, Chief Executive Officer, The Alliance for Excellence in Hospice and Palliative Nursing
On July 15, 2012, the Palliative Nursing Leadership Institute became a reality.
The institute was a joint project supported by the Hospice and Palliative Nursing Association (HPNA) and the Hospice and Palliative Nursing Foundation (HPNF). Leadership development is a cornerstone of HPNA’s mission statement, which is: “Leading the way to promote excellence in the provision of palliative nursing care through leadership development, education, and the support of research in the field.”
The guiding vision for the Palliative Nursing Leadership Institute is “a national health care system in which every patient has access to quality palliative nursing care.” The mission of the institute is to “develop leaders who will embrace, utilize, and integrate palliative nursing concepts into professional nursing practices throughout the health care system, as achieved through a model of education and mentoring.”
Have you signed up to receive Sharing Nursing’s Knowledge? The monthly Robert Wood Johnson Foundation (RWJF) e-newsletter will keep you up to date on the latest nursing news, research and trends. Here are descriptions of some of the stories in the September issue:
Advocates Call on Nurses to Take Leading Role in Palliative Care
The United States is facing a growing need for palliative care, which focuses on symptom relief and optimizing quality of life at all stages of serious illness—but the country has a serious shortage of palliative care providers. Experts say nurses can help fill the void. Advanced practice registered nurses can provide high quality palliative care, and nurse leadership can help reshape and build the field.
Study: Nurse-Led Intervention Can Dramatically Reduce Deadly, Costly Infections
A study funded by the RWJF Interdisciplinary Nursing Quality Research Initiative (INQRI) reveals that combining several tested and proven practices for preventing central line associated bloodstream infections with a program to improve safety, teamwork and communication can dramatically reduce infection rates. While health care teams using the bundles were interdisciplinary, in each unit, nurses were responsible for ensuring adherence to the intervention.
Nurse’s Mobile App Idea Helps New Parents
Anna Wroble, a nurse and a mother of four in Nevada, recently won a contest sponsored by Dignity Health, a national hospital chain, for her idea for a mobile application that would enable parents to track their babies’ growth during the first year of their lives. The NICU Baby Growth Tracker app—one of three projects that received funding through the contest—became available for free download in August.
2012 RWJF Nurse Faculty Scholars: The Next Generation of Leaders in Academic Nursing
Twelve talented and diverse junior nurse faculty from across the country have been chosen as the fifth cohort of RWJF Nurse Faculty Scholars. The award is given to junior faculty who show outstanding promise as future leaders in academic nursing. It is designed to promote their academic careers, support their research, and reduce the severe nurse faculty shortage that is facing the nation. Each scholar receives a three-year $350,000 grant to pursue research, leadership training in all aspects of the faculty role, and mentoring from senior faculty at his or her institution.
By RWJF Executive Nurse Fellows alumna Keela Herr, PhD, RN, FAAN, Professor and Associate Dean for Faculty, The University of Iowa College of Nursing, Co-Director, Iowa John A. Hartford Center of Geriatric Nursing Excellence
A recent article in the New York Times highlighted an important study by Tim Platts-Mills, MD, and his colleagues that examined pain treatment of older adults in emergency departments across the country. They found that people over age 75 are about 20 percent less likely to have their pain treated than are middle-aged patients. More importantly, the researchers found that in the over-75 group, only 53 percent of those who reported pain received an analgesic or a prescription for one. In patients with severe pain, only 65 percent received an analgesic.
These findings indicate that we still have a lot of work to do to address the under-treatment of pain in older people. The findings contribute to data collected in other care settings (such as hospitals, nursing homes and hospices) that also show inadequate treatment of pain in older people.
Attention was first drawn to the problem in the early 1990s, and researchers and clinicians have since contributed knowledge to guide provider practices to improve pain care. Yet, here we are 20 years later, and the picture hasn’t improved much.
Many organizations and groups (such as the International Association for the Study of Pain, the American Pain Society, the American Society for Pain Management Nursing, the American Geriatric Society, and the American Pain Foundation) are committed to quality pain care for all people. These groups work to raise awareness, provide education and resources, develop clinical practice guidelines and advocate for research and policies that support good care.