Palliative Care News

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  • Virginia Wadley, Ph.D., says until this new JAMA study, whether or not stroke survivors are at-risk over the long term was an unknown.Stroke has fallen to the fifth-leading cause of death in the United States due to decreases in people dying from it, and this increase in survivors has led to questions about their health in the years following stroke. In the United States, about 795,000 residents experience a stroke yearly, according to the American Heart Association. Over the last two decades, while accounting for age, disability rates due to stroke increased by 40 percent, according to the State of U.S. Health report. A new Journal of the American Medical Association study looked at 23,572 Reasons for Geographic and Racial Differences in Stroke (REGARDS) study participants age 45 years or older without cognitive impairment, which includes failing memory and processing thoughts more slowly. The research team, which included investigators from the University of Alabama at Birmingham, report those who experienced a stroke had an acute decline in cognitive function and also accelerated and persistent cognitive decline over six years. “Many stroke survivors are monitored for physical and cognitive effects only during the acute rehabilitation period during which the bulk of progress is expected to occur,” said senior study author Virginia Wadley, Ph.D., associate professor in the UAB Division of Gerontology, Geriatrics and Palliative Care. “Whether survivors are at risk for greater or more rapid cognitive decline over subsequent years has been difficult to answer, because there seldom have been pre-stroke cognitive data available for comparison.” Over the median follow-up of 6.1 years, 515 participants survived incident stroke and 23,057 remained stroke-free. “We looked at all REGARDS participants’ rates of cognitive change, including those who have and have not gone on to have a stroke, to detect the impact of stroke on cognition,” Wadley said. “Because we could utilize this data set, we were able to find that stroke survivors are vulnerable to a faster rate of decline in various thinking skills in the years following stroke compared to age/disease-related changes in the years prior to stroke and to changes that occur in peers who have not experienced stroke.” Wadley says this finding has important implications for clinical practice, research and potentially health policy. “Our findings highlight a need for long-term monitoring and follow-up care for stroke survivors, with a focus on the mounting potential for cognitive impairment in subsequent years. Therapies to support cognitive abilities should be a high priority. And long-term cognitive abilities could be an important domain to evaluate in relation to initial stroke treatments.” “Our findings highlight a need for long-term monitoring and follow-up care for stroke survivors, with a focus on the mounting potential for cognitive impairment in subsequent years,” Wadley said. “Therapies to support cognitive abilities should be a high priority. And long-term cognitive abilities could be an important domain to evaluate in relation to initial stroke treatments.” This study was supported by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health and REGARDS principal investigators Drs. George and Virginia Howard, both professors in the UAB School of Public Health. “The Howards’ generous collaborative spirit and enthusiasm for discovery outside the clinic-based paradigms are the reasons for the scope of knowledge being created in this ongoing research,” Wadley said. “We also are indebted to our gracious study participants who are helping us better understand risks for stroke and cognitive decline; knowledge that ultimately will contribute to reducing these adverse outcomes.”

  • Studies reporting on 207 advanced cancer patients and 122 of their caregivers who participated in a trial called ENABLE III revealed benefits to patients who received care soon after diagnosis versus 12 weeks later.

  • J. Nicholas Dionne-Odom, Ph.D., also from the University of Alabama, and colleagues examined the effect of early versus delayed initiation of a PC intervention for 122 caregivers of 207 patients with advanced cancer.

  • Early palliative care offers statistically beneficial effects on patient survival and family caregiver burden, according to articles published in the Journal of Clinical Oncology.Two papers recently published by University of Alabama at Birmingham School of Nursing researchers in the Journal of Clinical Oncology highlight the need for a “culture shift” by clinicians and the general public to engage palliative care services long before a person reaches the final stage of life. Two articles reporting on 207 advanced cancer patients and 122 of their family caregivers who participated in the ENABLE III Trial (“Early Versus Delayed Initiation of Concurrent Palliative Oncology Care” and “Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients With Advanced Cancer”) reveal that palliative care delivered soon after a diagnosis of advanced cancer had statistically beneficial effects on patient survival and family caregiver depression and burden when compared with care provided 12 weeks later. The one-year survival rate for patients was 63 percent for those who received early palliative care, compared with 48 percent in the group whose care was delayed. These results support integration of palliative care for patients and families as soon as possible after diagnosis. “Palliative care is about providing an extra layer of support so that patients can live well and families can be supported,” said principal investigator Marie Bakitas, D.N.Sc., professor and Marie L. O’Koren Endowed Chair in the School of Nursing. “These data support the importance of providing this care at the same time as medical treatments aimed at fully curing disease. Too often, that is not the case.” “If patients and clinicians wait to introduce palliative care when a person is actively dying, it limits the full range of services that patients and their families can receive,” said Nick Dionne-Odom, Ph.D., postdoctoral fellow in the School of Nursing and lead author of the family caregiver ENABLE Trial outcomes. “This means palliative care is mistakenly associated solely with end-of-life care. This is unfortunate. Our research shows that integration of palliative care earlier in the cancer trajectory benefits both patients and their family caregivers.” “These data support the importance of providing this care at the same time as medical treatments aimed at fully curing disease. Too often, that is not the case.” The investigators say that family caregivers who receive this support and education have greater capacity and skills to deliver high-quality support to patients. Likewise, providing patients with palliative care early eases the burden on families, who deliver the majority of care and psychosocial support in the home.  “Anyone who has been through cancer with a family member can attest to the physical, psychological and existential burden it places on both parties,” Dionne-Odom said. “Receiving this extra layer of support early and at the same time as curative medical treatments is vital for helping patients and their family caregivers develop the coping and other skills needed for the ups and downs of their journey.” Bakitas says two other shifts in the view of palliative care also are needed. “Reimbursement mechanisms need to incentivize this care to be offered regardless of six-month prognosis, which is the current hospice-benefit requirement,” Bakitas said. “Also, increased clinician education is needed to train both specialists and general practitioners in palliative care.” Both researchers say mechanisms still need to be identified that explain the effects of early palliative care, and they are looking at the impact of depression and biological mechanisms that might contribute to this explanation. Bakitas recently was awarded a five-year, $3.5 million National Institute of Nursing Research R01 grant to study whether palliative care provided to advanced heart-failure patients while they are well results in a better quality of life, improved mood, and less symptom distress/burden for patients and/or caregivers when compared to usual heart-failure care. It will test this similar intervention using materials and an approach adapted from the ENABLE cancer intervention.

  • National Institute of Nursing Research’s five-year grant is for ENABLE: CHF-PC study to determine whether palliative care is a best practice for heart-failure patients.University of Alabama at Birmingham School of Nursing professor and Marie L. O’Koren Endowed Chair Marie Bakitas, DNSc, has received a five-year, $3.5 million R01 grant from the National Institute of Nursing Research for a study to determine whether palliative care provided when advanced heart-failure patients are still well will result in better quality of life, improved mood, and less symptom distress/burden for patients and/or caregivers, when compared to usual heart-failure care. This National Institutes of Health randomized controlled trial, “ENABLE: CHF-PC (Educate, Nurture, Advise Before Life Ends: Comprehensive Heartcare for Patients and Caregivers),” will compare the quality of life, symptom burden and mood in 380 older adults with stage III/IV heart failure and their family caregivers. Half of the patient participants will be randomized to the intervention, and half will receive usual heart-failure care. The focus of this palliative care model is on coaching patients and their family caregivers in problem-solving, communication, symptom management and health care decision-making with a goal of empowering them to be better prepared to meet the challenges of progressive illness. “Despite treatment advances, 50 percent of heart-failure patients will die within five years,” said Bakitas, who also is associate director of the UAB Center for Palliative and Supportive Care. “Increasing age and rural environment are risk factors associated with the greatest heart-failure complications and death. And, in the year before death, research shows heart-failure patients will experience multiple hospitalizations and personal and economic costs of unrelieved physical and emotional suffering. The overall goal of this study is to test the efficacy of a heart-failure palliative care telehealth model in reducing the suffering and burden from symptoms associated with living with advanced heart failure.” Palliative care, Bakitas says, has been demonstrated in other diseases to reduce end-of-life suffering, hospital readmissions and health care costs; but only 16 percent of Alabama hospitals have palliative care programs, compared with the national average of 53 percent. Bakitas adds that, of Alabama’s 67 counties, 55 are categorized as rural, and the incidence of heart failure in these rural counties is greater than that of the state’s urban counties, making an intervention such as this a key to improving quality of life for rural Alabama residents with heart failure and their families. “There is an urgent need to increase palliative care access to older adults with advanced illness, especially in the South, which has the lowest availability to these services,” she said. “It is critical to understand how to best make this care accessible to this population.” The focus of this palliative care model is on coaching patients and their family caregivers in problem-solving, communication, symptom management and health care decision-making with a goal of empowering them to be better prepared to meet the challenges of progressive illness, Bakitas says. This is a telehealth intervention, meaning patients and their caregivers do not have to leave home to participate after a single in-person palliative care assessment. The in-person consultation is followed by a series of phone sessions for a period of 48 weeks, specifically tailored to meet the needs of a rural population. Bakitas and others have demonstrated in advanced cancer that concurrent palliative care offered from the time of advanced diagnosis achieves beneficial quality of life, symptom burden, depression and, in some cases, survival outcomes. The intervention in this study is adapted from Bakitas’ successful palliative care model for cancer (ENABLE: Educate, Nurture, Advise, Before Life Ends). Advanced heart failure affects nearly 6 million Americans, and less is known about how this illness affects the 80 percent of heart-failure patients ages 65 years and older because research tends to focus on younger patients. Currently, Bakitas says, only 19 percent of Medicare-age heart-failure patients and their family caregivers access palliative care services, compared with more than half of advanced cancer patients. “Older patients with heart failure and their family caregivers rarely have access to palliative supportive care services because the disease is unpredictable, and in the current health care system, palliative treatment may not be provided until after other medical treatments have been tried,” Bakitas said. Also important to the study is the impact that palliative care has on caregiver burden. This study will examine the impact of the intervention on caregivers’ self-reported quality of life, mood, health and caregiving burden. “This is important because caregivers can spend an average of eight hours each day assisting the patient with their care,” she said. “This takes a toll on their physical and psychological well-being. Caregivers will often ignore their own needs, and ultimately, without assistance that this coaching is designed to provide, caregiving studies have documented that they can have higher rates of illness and death.”

  • UAB neurology researcher Kristen Triebel gets substantial American Cancer Society grant to investigate the ability of patients to understand, choose and consent to treatment.Kristen TriebelA University of Alabama at Birmingham researcher has received an American Cancer Society Mentored Research Scholars grant to study long-term decision-making abilities in patients with advanced cancer. Kristen Triebel, Psy.D., assistant professor of neurology and director of the Neuropsychology Fellowship Training Program in the UAB Department of Neurology, has been awarded a five-year, $728,000 grant for her work titled “Decisional Capacity Evaluation in Metastatic Brain Cancer.” Metastasis, or the spread of a cancer from one organ or disease site to another,to the brain occurs in 25 percent of all individuals with cancer. Due to cognitive impairment, emotional distress and other changes occurring as a result of their severe illness, individuals with brain metastases frequently have reduced capacity to make well-informed decisions about their medical treatment. These decisions may include deciding among focused or whole-brain radiation, surgery, chemotherapy or palliative care, or whether to pursue experimental treatment. Surprisingly, decisional capacity is not routinely assessed in this patient population prior to patients’ consenting to treatment. The ACS grant allows Triebel to critically study patients with advanced cancer, including lung and breast cancer that has metastasized to the brain, and pancreatic cancer. She also will examine issues in these patients’ treatments, cognitive function and quality of life. “Patients with advanced cancer are seriously ill and have to make a lot of important medical decisions,” said Triebel, an associate scientist in the Cancer Control and Population Sciences program at the UAB Comprehensive Cancer Center.“We are looking to see whether our initial findings from metastatic cancer patients can generalize to other cancer populations who have comparable levels of illness — even those who don’t get tumors that spread to the brain.” According to Triebel, the goal is to be able to improve decision-making capacity. “We hope this research leads to better understanding of patients at risk, so we can advise on best practices for assessment and interventions to support patients in this capacity, ultimately improving their quality of life.” Triebel, who received a Center for Clinical and Translational Sciencegrant in 2012, leveraged that research into this five-year grant from ACS. “This award provides opportunities for me to grow a research program by fostering collaboration with other cancer investigators. And it also allows me to pursue other career-development opportunities.” At a time when funding opportunities are difficult to attain, Triebel is an example of what researchers need to do to secure additional funding that has the potential to change the future of cancer treatment and care. She emphasizes the protected time and money to conduct the research that the CCTS grant allowed, as well as “access to successful researchers who taught me how to conduct research and write grants,” she said. “That grant was great, providing two years of support that allowed me to do the research, which in turn helped me secure this larger ACS grant.” Ultimately this work comes down to the patients. “Certainly, this study will address the knowledge gap by investigating medical decision-making capacity in patients; but the great potential is to improve clinical practice and decision-making for these populations,” said Triebel.

  • Clinic will field an interdisciplinary team to help ensure access to care for city’s most vulnerable patients.Connie White Williams, left, and Maria ShireyThe University of Alabama at Birmingham School of Nursing has received a $1.5 million Nurse Education Practice Quality Retention grant from the Health Resources and Services Administration to open a new nurse-managed, population-based, transitional care clinic for heart-failure patients recently discharged from UAB Hospital. Born of the UAB Nursing academic practice partnership between the school and hospital, this innovative, replicable, collaborative-practice model clinic comprises an interprofessional team of nursing, medicine, social work, health services administration and health information technology professionals. It targets the underinsured and medically underserved. The three-day-per-week clinic and its around-the-clock transitional care support opened this month on the second floor in UAB Hospital’sRussell Ambulatory Center and fills a gap in the community. “Recent closure of the regional indigent hospital, Cooper Green Mercy Hospital, has created a critical access issue for this vulnerable population,” said the project’s director Maria Shirey, Ph.D., assistant dean for Clinical and Global Partnerships. “The school already has experience with the successful nurse-managed PATH clinic at M-POWER Ministries, which is geared to people living with diabetes. This new clinic expands our reach, serving as a hub for transitional care coordination services for heart-failure patients across the hospital, clinic, home and community.” “Imagine being discharged from the hospital knowing you suffer from heart failure and having no access to continuing outpatient care,” said UAB School of Nursing Dean Doreen Harper, Ph.D. “What do you do when you’re in trouble — go to the emergency department, get readmitted or, worse, do nothing? It’s a recipe for a vicious cycle that could have disastrous outcomes. Our partnership with the hospital and our previous success at the PATH clinic will give UAB patients the support they need to hopefully prevent this from happening.” Effective strategies needed During the past several years, UAB has been monitoring clinical outcomes in heart-failure patients, says Connie White-Williams, Ph.D., director of the Center for Nursing Excellence and Shirey’s partner in the project. Inconsistent lengths of hospital stays have been observed along with higher-than-desired readmission rates. This, she says, is in line with studies from the American Heart Association’s “Get With the Guidelines” heart-failure registry that suggest 30-day hospital-readmission rates for heart-failure patients have remained steady despite efforts aimed at decreasing them. Traditional quality efforts, she says, have only modestly improved the rates, and further development of new, more effective strategies is needed. “We believe this model, with its around-the-clock transitional care coordination across the hospital, clinic and home, will be effective in keeping patients at home and as healthy as possible,” White-Williams added. “Given the requirements of the Triple Aim and the value-based purchasing-reimbursement systems that are part of the Affordable Care Act, care-coordination improvement is needed for this patient population. And what we learn from this initiative can ultimately change the existing model of care to benefit all heart-failure patients.” Transitional care coordination begins while patients are still in the hospital, Shirey says. A clinical nurse leader will serve as a case manager to coordinate care across the health care continuum and be on call for issues that may arise after clinic hours. Nurse practitioners will see patients during clinic hours and make daily inpatient rounds on eligible heart-failure patients at UAB Hospital. Team members will evaluate patients for hospice eligibility and contact them within 48 hours of hospital discharges to ascertain their well-being and confirm scheduled follow-up clinic visits. “A nurse practitioner will make an initial home visit to assess the patient’s status and social support, as well as other issues that could impact their health, including lack of air conditioning or something as simple as not having a scale on which to weigh,” she said. Palliative care component Shirey adds that the population-based transitional care team will use the hospital’s new EMMI Solutions technology, an automated voice-response technology, to set up electronic patient calls to trigger self-reported weigh-ins and provide reminders about appointments and care recommendations. EMMI is already being used at UAB Hospital for other patient populations. A unique aspect of the clinic, Shirey says, is the incorporation of palliative care services. UAB School of Nursing Marie O’Koren Endowed Chair Marie Bakitas, D.N.Sc., has an internationally recognized, NIH-funded program of research focused on delivering targeted palliative care interventions customized for heart-failure patients and their caregivers. Bakitas will help the team to integrate palliative care principles into all aspects of care to help improve quality of life for both the patients and their families. As the clinic is part of a world-class academic medical center, it also has an educational component. Graduate nursing students and health systems administration students from the schools of Nursing and Health Professions will be involved in conducting needs-assessments, performing information flow and workflow analyses, ensuring the operability of electronic medical records, and developing and implementing a plan for smooth clinic operations. Eventually, a variety of students will be incorporated as members of the health care team. This includes bachelor’s through doctoral nursing students, bachelor’s-level social work students, and medical residents and fellows in cardiology. They will participate in morning team huddles and afternoon post-conferences and provide input on team functioning at the end of each clinic day. “As trainees, these students are our next generation of providers, and we want them to learn how to practice in interprofessional collaborative practice models as part of high-functioning teams,” Shirey said. “With faculty mentors, students will be able to work on projects that support the clinic and also allow students to fulfill interprofessional-related course requirements. Ultimately, we envision our students’ also being involved as members of interprofessional teams in the community, tackling the social determinants of health that continue to keep our patient population unhealthy, including lack of education, poor environment and poverty.” Team members for the clinic also include UAB School of Nursing Assistant Professor Shea Polancich, Ph.D., an expert on quality and safety, and UAB cardiologist Vera Bittner, M.D., the clinic’s collaborating physician.