Susan E. Hickman
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Professor Susan Hickman (Professor, School of Nursing, Community & Health Systems) is committed to optimizing the quality of life for older adults in life’s final chapter through informed, values-based decision-making and effective communication about their treatment preferences. A primary focus of her research is the Physician Orders for Life-Sustaining Treatment (POLST) program, which improves the continuity of care by communicating patients’ treatment preferences as actionable medical orders. Findings from her research have been widely disseminated and are used across the country to support programs based on the POLST model.
Hickman co-founded the Indiana Patient Preferences Coalition, a group of individuals and organizational representatives from law, medicine, nursing, senior care, and ethics. The coalition created the Indiana POST (Physician Orders for Scope of Treatment), which is based on the national POLST model. Dr. Hickman provides education and facilitation skills-training for POST to health care providers around the state. The National Institutes of Health recently awarded her a second grant to study the quality of POLST decisions. She also serves as the Palliative Care Core lead on a Centers for Medicare and Medicaid Services innovations grant where POLST is used to reduce avoidable hospitalizations and improve care in 19 Indianapolis area nursing facilities. Her collaboration with colleagues at IU Health resulted in the launch of the Encompass Initiative, which will provide education to improve primary palliative care throughout the academic health system.
Professor Hickman’s work to improve the quality of life for older adults in life’s final chapter is another example of how IUPUI faculty are TRANSLATING RESEARCH INTO PRACTICE.
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Item Physicians' and nurses' perspectives on increased family reports of pain in dying hospitalized patients(2000) Hickman, Susan E.; Tolle, Susan W.; Tilden, Virginia P.Many indicators suggest that care of the dying in Oregon has been improving over the past decade. However, results from a recent study suggest that one aspect of care of the dying, pain management, may be worsening. In late 1997, family reports of moderate and severe pain in dying hospitalized patients increased from 33% to 57%. This occurred during a volatile time in the Oregon political climate associated with events surrounding a second vote on physician-assisted suicide. In order to better understand the observed increase better, a statewide sample of physicians and nurses was surveyed to obtain their opinions about factors that may have contributed to the increased family reports of moderate and severe pain in dying hospitalized patients. Seventy-nine percent of respondents endorsed two or more factors as partial explanations. These factors include an increase in family expectations about pain management (endorsed by 96%), decreased physician prescribing (endorsed by 66%), and reduced nurse administration of pain medication (endorsed by 59%). Physicians who thought reduced physician prescribing was a partial factor rated fears of the Board of Medical Examiners and the Drug Enforcement Administration as the most likely explanations for decreased prescribing. More research is needed to better understand family expectations for end-of-life care, fears of investigation, and pain medication practices.Item Trends in opioid use over time: 1997 to 1999(2004-02) Tolle, Susan W.; Hickman, Susan E.; Tilden, Virginia P.; Bubalo, Joseph S.; Fromme, Erik K.Substantial resources have been spent to improve pain control for dying patients, and increased opioid administration has been presumed. Oregon has been a consistent leading state in per capita use for morphine for the past 10 years, as recorded by the Automation of Reports and Consolidated Orders System (ARCOS). Health policy experts, extrapolating from World Health Organization methods, have suggested these data are indicative of the quality of end-of-life care in Oregon. To determine whether trends in opioid prescription at the state and national levels reflect increased opioid use for inpatients during the final week of life, chart reviews were conducted to record all opioid medications administered in the last week of life to 877 adult inpatients who died from natural causes between January 1, 1997 and December 31, 1999. Inpatient morphine use did not increase significantly for dying patients from 1997 to 1999. However, overall morphine use for both Oregon and the United States as measured by ARCOS data increased significantly. Comparisons revealed no significant difference between linear trends for Oregon and U.S. morphine use, but both were significantly greater than the dying inpatients. This pattern was also found for all other opioids. These findings suggest that ARCOS data do not necessarily provide information about opioid use for specific subpopulations of patients and raise questions about the meaning of observed increases in ARCOS data.Item Administrators' perspectives on ethical issues in long-term care research(2008) Hickman, Susan E.; Cartwright, Juliana C.; Young, Heather M.ETHICAL ISSUES ARE A SIGNIFICANT potential barrier to much-needed research in long-term care settings. LTC stakeholder perspectives are largely absent from the development of regulation and guidelines. Fifteen long-term care administrators were interviewed as part of a study of ethical issues in community-based, long-term care research. Established qualitative procedures for conducting content analysis were used to organize the data. Findings suggest that existing mechanisms to protect human subjects do not take into account important differences between academic and long-term care settings. The full potential of LTC research will not be realized until supportive processes to enhance human subjects protections are developed in a way that is reflective of the LTC environment.Item Use of the Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program in the Hospice Setting(2009-02) Hickman, Susan E.; Nelson, Christine A.; Moss, Alvin H.; Hammes, Bernard J.; Terwilliger, Allison; Jackson, Ann; Tolle, Susan W.Background The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program was designed to ensure the full range of patient treatment preferences are honored throughout the health care system. Data are lacking about the use of POLST in the hospice setting. Objective To assess use of the POLST by hospice programs, attitudes of hospice personnel toward POLST, the effect of POLST on the use of life-sustaining treatments, and the types of treatments options selected by hospice patients. Design A telephone survey was conducted of all hospice programs in three states (Oregon, Wisconsin, and West Virginia) to assess POLST use. Staff at hospices reporting POLST use (n = 71) were asked additional questions about their attitudes toward the POLST. Chart reviews were conducted at a subsample of POLST-using programs in Oregon (n = 8), West Virginia (n = 5), and Wisconsin (n = 2). Results The POLST is used widely in hospices in Oregon (100%) and West Virginia (85%) but only regionally in Wisconsin (6%). A majority of hospice staff interviewed believe the POLST is useful at preventing unwanted resuscitation (97%) and at initiating conversations about treatment preferences (96%). Preferences for treatment limitations were respected in 98% of cases and no one received unwanted cardiopulmonary resuscitation (CPR), intubation, intensive care, or feeding tubes. A majority of hospice patients (78%) with do-not-resuscitate (DNR) orders wanted more than the lowest level of treatment in at least one other category such as antibiotics or hospitalization. Conclusions The POLST is viewed by hospice personnel as useful, helpful, and reliable. It is effective at ensuring preferences for limitations are honored. When given a choice, most hospice patients want the option for more aggressive treatments in selected situations.Item A Comparison of Methods to Communicate Treatment Preferences in Nursing Facilities: Traditional Practices versus the Physician Orders for Life-Sustaining Treatment (POLST) Program(2010) Hickman, Susan E.; Nelson, Christine A.; Perrin, Nancy A.; Moss, Alvin H.; Hammes, Bernard J.; Tolle, Susan W.Background Traditional methods to communicate life-sustaining treatment preferences are largely ineffective. The Physician Orders for Life-Sustaining Treatment (POLST) Program offers an alternative approach, but comparative data are lacking. Objectives To evaluate the relationship between communication methods (POLST versus traditional practices) and documentation of life-sustaining treatment orders, symptom assessment and management, and use of life-sustaining treatments. Design Retrospective observational cohort study conducted between June 2006 and April 2007. Setting A stratified, random sample of 90 Medicaid-eligible nursing facilities in Oregon, Wisconsin, and West Virginia. Subjects 1711 living and deceased nursing facility residents aged 65 and older with a minimum 60-day stay. Measurements Life-sustaining treatment orders; pain, shortness of breath, and related treatments over a 7-day period; and use of life-sustaining treatments over a 60-day period. Results POLST users were more likely to have orders about life-sustaining treatment preferences beyond CPR than non-POLST users (98.0% vs. 16.1%, P<.001). There were no differences between POLST users and non-users in symptom assessment or management. POLST users with orders for Comfort Measures Only were less likely to receive medical interventions (e.g., hospitalization) than residents with POLST Full Treatment orders (P=.004), residents with Traditional DNR orders (P<.001), or residents with Traditional Full Code orders (P<.001). Conclusion POLST users were more likely to have treatment preferences documented as medical orders than non-POLST users but there were no differences in symptom management or assessment. POLST orders restricting medical interventions were associated with the lower use of life-sustaining treatments. Findings suggest the POLST program offers significant advantages over traditional methods to communicate preferences about life-sustaining treatments.Item Impact of Ambient Bright Light on Agitation in Dementia(2010) Barrick, Ann Louise; Sloane, Philip D.; Williams, Christianna S.; Mitchell, C. Madeline; Connell, Bettye Rose; Wood, Wendy; Hickman, Susan E.; Preisser, John S.; Zimmerman, SherylObjective To evaluate the effect of ambient bright light therapy on agitation among institutionalized persons with dementia. Methods High intensity, low glare ambient lighting was installed in activity and dining areas of a state psychiatric hospital unit in North Carolina and a dementia-specific residential care facility in Oregon. The study employed a cluster-unit crossover design involving four ambient lighting conditions: AM bright light, PM bright light, All Day bright light, and Standard light. Sixty-six older persons with dementia participated. Outcome measures included direct observation by research personnel and completion by staff caregivers of the 14-item, short form of the Cohen-Mansfield Agitation Inventory (CMAI). Results Analyses of observational data revealed that for participants with mild/moderate dementia, agitation was higher under AM light (p=0.003), PM light (p<0.001), and All Day light (p=0.001) than Standard light. There also was a trend toward severely demented participants being more agitated during AM light than Standard light (p=0.053). Analysis of CMAI data identified differing responses by site: the North Carolina site significantly increased agitation under AM light (p=0.002) and PM light (p=0.013) compared with All Day light while in Oregon, agitation was higher for All Day light compared to AM light (p=0.030). In no comparison was agitation significantly lower under any therapeutic condition, in comparison to Standard lighting. Conclusions Ambient bright light is not effective in reducing agitation in dementia and may exacerbate this behavioral symptom.Item “The RESPECT (Research in Palliative and End-of-Life Communication and Training) Center”(Office of the Vice Chancellor for Research, 2011-04-08) Hickman, Susan E.; Sachs, Greg A.; Haase, Joan E.; Stickler, Molly DonovanCommunication is crucial to decision-making and high-quality care for patients with serious illness, but there are significant gaps in communication among patients, families, and clinicians. The Research in Palliative and End-of-Life Communication and Training (RESPECT) Center was funded in July 2010 under the IUPUI Signature Center Initiative to advance the science of palliative and end-of-life communication. The mission of the RESPECT Center is to build a collaborative, interdisciplinary scientific community of researchers and clinicians to work together to advance the science of communication in palliative and end-of-life care across the lifespan. The Center capitalizes on the complementary and expanding expertise at IU to support the advancement of research on communication in populations with serious illness that is lifethreatening, debilitating, or terminal. The Center is working to achieve its mission through three primary activities. First, the Center convenes researchers with shared expertise to utilize the collective wisdom of the interdisciplinary group in grant development and submission. The RESPECT Center uses a peer review meeting model to provide a forum for students, trainees, and faculty to develop and refine their grant writing activities focused on palliative and end-of-life care from idea development to grant revision. Second, research development is augmented by funding opportunities for peerreviewed pilot studies. Pilot funding is designed to attract new researchers to this area of study and to facilitate the generation of pilot data for more experienced researchers who are carving a new path in the field. Finally, several outreach activities are being undertaken with the goal of fostering new partnerships for translational science. The RESPECT Visiting Scholar series brings in external experts to present as part of a conference series and to meet with research faculty, clinicians, and administration to discuss issues related to advancing palliative and endof-life care research at IU. Additionally, a city-wide conference will be convened in year 3 to bring together members of the health care professional community with an interest in evidencebased practice in palliative and end-of-life care. The long-term goal of the RESPECT Center is to secure funding to permit the continued operation and expansion of Center activities.Item Practical Strategies and Advice for Managing Ethical Concerns in End-of-Life Research(Office of the Vice Chancellor for Research, 2011-04-08) Hickman, Susan; Cartwright, Juliana; Nelson, Christine; Knafl, Kathryn; Bankowski, SusanProblem/Issue Statement A growing national interest in improving end-of-life care has increased the amount of research involving dying patients and their families. However, questions about how to best balance the pressing need for research with protecting participants trouble both investigators and institutional review boards (IRBs). Furthermore, ethical concerns were identified as a potential barrier to advancing end-of-life science at the 2004 NIH State of the Science Consensus Conference. This NIH-funded study describes ethical concerns and practical strategies for managing ethical challenges in the conduct of end-of-life research. Description of Research Methods: A qualitative, exploratory case study design followed the development of end-of-life research from proposal generation through the review process. Inclusion criteria mirrored those used in the NIH State of the Science Report. Cases were identified through a search of active studies in the NIH RePORT database and an internet search of active research funded by private foundations and institutions. Data were collected from a purposive sample of 34 principal investigators who participated by phone in semistructured interviews and provided document data regarding their experiences with the grant and IRB review processes. Interviews were recorded and transcribed with identifying information removed to protect confidentiality. Relevant document data were extracted and de-identified. Data were analyzed using exploratory qualitative case study methods. Results: The most common ethical concerns about research with end-of-life populations were recruitment strategies, the burden of study procedures, and population vulnerability. Strategies to address these concerns included gathering data about the benefits of research participation, consulting with the IRB and with more experienced researchers, using non-threatening language in the consent and other materials, being flexible in data collection protocols to accommodate participant limitations, creating back-up plans in the event of crisis, partnering with clinicians to ensure prompt attention to symptom reports, and addressing the training and emotional needs of research staff . PIs advise IRBs to seek out expert consultants for end-of-life studies, work collaboratively with investigators, simplify the consent process, and be open to the benefits of research participation for dying patients and their families rather than assuming harm will occur. Conclusion: Investigators use a variety of strategies to manage ethical issues in the conduct of end-oflife research. They advise IRBs to seek out expertise, enhance knowledge of the population, and work collaboratively with investigators. Future research will focus on gathering systematic data regarding the experiences of dying patients and their families with end-of-life research.Item Advance directives in home health and hospice agencies: United States, 2007(2011-11) Resnick, Helaine E.; Hickman, Susan E.; Foster, Gregory L.This report provides nationally representative data on policies, storage, and implementation of advance directives (ADs) in home health and hospice (HHH) agencies in the United States using the National Home and Hospice Care Survey. Federally mandated ADs policies were followed in >93% of all agencies. Nearly all agencies stored ADs in a file at the agency, but only half stored them at the patient's residence. Nearly all agencies informed staff about the AD, but only 77% and 72% of home health agencies informed the attending physician and next-of-kin, respectively. Home health and hospice agencies are nearly universally compliant with ADs policies that are required in order to receive Medicare and Medicaid payments, but have much lower rates of adoption of ADs policies beyond federally mandated minimums.Item Compassion and Vigilance: Investigators' Strategies To Manage Ethical Concerns in Palliative and End-of-Life Research(2012) Hickman, Susan E.; Cartwright, Juliana C.; Nelson, Christine A.; Knafl, KathleenBackground Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. Methods A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns. Findings Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes of compassion, as evidenced by a heightened sensitivity to the needs of the population, coupled with vigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff. Conclusions Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.