Addressing Disparities in Palliative Care
Racial Inequities in End-of-Life Healthcare: How Perceived Discrimination Affects Communication and Decision-Making During Serious Illness
Principal Investigator: Crystal Brown, MD, MA
Funder and Mechanism: K23- NIH/National Institute on Minority Health and Health Disparities
Racial and ethnic minorities are more likely to experience high intensity, non-beneficial, burdensome and expensive care at end-of-life despite the fact that the majority of these patients prefer to die at home. The roles of perceived discrimination and lack of trust and how these factors affect communication and decision- making around the care received at the end of life are not understood. In this study, Dr. Brown uses mixed-methods (electronic health record, self-reported questionnaires, interviews) with a prospective cohort of patients (n=400) to examine the relationship between perceived discrimination, mistrust, communication and healthcare outcomes. She is also piloting an intervention (n= 60) to improve resilience and facilitate goal-making and communication skills in patients who have experienced healthcare discrimination.
Understanding and Improving Inequities in Palliative Care for Older Adults with Advanced Dementia and Limited-English Proficiency: A Mixed-Methods Evaluation
Principal Investigator: Rashmi K. Sharma, MD, MHS
Funder and Mechanism: R01- NIH/National Institute on Aging
This study uses a mixed-methods approach to: detect disparities in the quality of care for older adults with Alzheimer’s Disease and Related Dementias (ADRD) and limited-English proficiency (LEP) across palliative care domains using EHR data; advances our understanding of important and modifiable patient/family, provider, and system level factors driving these disparities using interviews with key stakeholders; and assesses community-level resources, capacity, and needs to support high quality palliative care for three diverse LEP communities (Latinx, Chinese, and Vietnamese). This contribution is expected to be significant because it will identify targets for the development of effective multi-level, culturally and linguistically-appropriate interventions to reduce inequities in palliative care for this vulnerable population.
Resilience and Coping for Patients with Serious Illness
The Promoting Resilience in Stress Management (PRISM) Intervention: A Multi-Site Randomized Controlled Trial for Adolescents and Young Adults with Advanced Cancer
Principal Investigator: Abby R. Rosenberg, MD, MS, MA, FAAP
Funder and Mechanism: R01-NIH/National Cancer Institute
Despite growing recognition of the disparate needs and outcomes of adolescents and young adults (AYAs) with cancer, few age-specific or developmentally-appropriate palliative care interventions have been described. In this randomized controlled trial (intervention vs. usual care) of AYAs with cancer (n=144), patients participate in a brief intervention that is delivered in 4, 30-60 minute, one-on-one sessions, followed by a family meeting. It targets skills in stress-management and mindfulness, goal-setting, positive reframing, and meaning-making. All of these skills have been associated with improved patient well-being in other populations, as well as with AYAs with newly diagnosed cancer. The study will test the hypothesis that AYAs who receive the PRISM intervention and their parents will report higher quality of life, lower anxiety/depression, and higher activation when compared to those who receive usual care.
Assessing and Promoting Resilience in Adults with Congenital Heart Disease
Principal Investigator: Jill Steiner, MD, MS
Funder and Mechanism: K23- NIH/National Heart, Lung, and Blood Institute
Patients with adult congenital heart disease are at risk for poor health-related quality of life, impaired psychosocial well-being, and early mortality. Enhanced resilience has the potential to improve patients’ experiences, yet the optimal ways of addressing the palliative care needs of this population are largely unknown. This study evaluates the relationship between resilience and patient-centered psychosocial outcomes using self-reported outcomes in a prospective cohort sample (n =150). Dr. Steiner is also conducting semi-structured interviews to explore patients’ experiences of resilience and coping (n= 25). Using these quantitative and qualitative findings, she will conduct a pilot trial of an adapted resilience intervention, assessing its feasibility and effectiveness to improve these outcomes. .
Navigating Patients and Families through the Neuro-ICU
Principal Investigator: Claire Creutzfeldt, MD
Funder and Mechanism: K23-NIH/National Institute of Neurological Disorders and Stroke
Although severe acute brain injury (SABI) is common, disabling, and often deadly, there is a paucity of research specific to the palliative care needs and interventions that may be needed for patients who have suffered SABI and their families. The goals of this project are to:
- Better understand palliative care needs and associated outcomes for patients in the neurological intensive care unit;
- Evaluate a palliative care intervention designed to improve patients’ care and quality of life; and
- Reduce psychological distress for patients’ family members.
Dr. Creutzfeldt is conducting a prospective cohort study employing an established palliative care needs checklist that is in daily use in the neurological intensive care unit at UW Medicine. In order to design a responsive and effective intervention, she is interviewing families and piloting it for feasibility and effectiveness in meeting the palliative care needs of this unique patient population and their families.
Interprofessional Communication and Collaboration
Improving Clinical Outcomes after ICU Transfer for Acute Respiratory Failure
Principal Investigator: Ann Long Jennerich, MD
Funder and Mechanism: K23- NIH/NHLBI
Patients transferred from acute care to the intensive care unit (ICU) for acute respiratory failure represent a population at high risk for poor clinical outcomes. These patients and their family members are likely to benefit from high-quality palliative care tailored to their needs. The primary objective of this K23 is to develop an understanding of the transfer process from a patient- and family-centered perspective to facilitate implementation of an intervention to improve palliative care for patients and their family members after patient transfer from acute care to the ICU for acute respiratory failure. This study includes:
- A prospective cohort study to identify elements of the transfer process associated with family member symptoms of depression, anxiety, and posttraumatic stress;
- Qualitative interviews of patients, family members, and clinicians to define the palliative care needs of patients and family members; and
- A pilot randomized trial to test the feasibility and preliminary efficacy of an intervention to improve palliative care for patients and their family after patient transfer from acute care to the ICU.
Randomized Trials of Communication Interventions
Using the Electronic Health Record to Identify and Promote Goals-of-Care Communication for Older Patients with Serious Illness
Principal Investigators: J. Randall Curtis, MD, MPH and Ruth A. Engelberg, PhD
Funder and Mechanism: R01 – NIH/National Institute of Aging
This R01 funds two linked randomized trials of a program to promote goals-of-care discussions for seriously ill, hospitalized older adults. One trial is a large, pragmatic trial embedded within the UW Medicine healthcare system and the second is a comparative effectiveness trial comparing two forms of the Jumpstart intervention to promote goals-of-care discussions.
Evaluating Effectiveness of a Communication Facilitator to Reduce Distress and Improve Goal Concordant Care for Critically Ill Patients and Their Families: A Randomized Trial
Principal Investigators: J. Randall Curtis, MD, MPH and Ruth A. Engelberg, PhD
Funder and Mechanism: R01- NIH/National Institute of Nursing Research
This randomized trial evaluates a novel model of care using a nurse “communication facilitator” trained to enhance communication for patients and their families through transitions in care with the goal of defining, communicating and delivering care that is consistent with the goals of informed patients and their families. This represents the next step in evaluating and disseminating an ICU communication facilitator model of care.
Disparities and Palliative Care
Sharma RK, Kim H, Gozalo PL, Sullivan DR, Bunker J, Teno JM. The Black and White of Invasive Mechanical Ventilation in Advanced Dementia. J Am Geriatr Soc. 2020 Sep;68(9):2106-2111.
Sprung CL, Jennerich AL, Joynt GM, Michalsen A, Curtis JR, Efferen LS, Leonard S, Metnitz B, Mikstacki A, Patil N, McDermid RC, Metnitz P, Mularski RA, Bulpa P, Avidan A. The Influence of Geography, Religion, Religiosity and Institutional Factors on Worldwide End-of-Life Care for the Critically Ill: The WELPICUS Study. J Palliat Care. 2021
Goals of Care/Advance Care Planning
Bernacki GM, Engelberg RA, Curtis JR, et al. Cardiopulmonary resuscitation preferences of people receiving dialysis. JAMA Netw Open. 2020;3(8):e2010398.
Khandelwal N, Long AC, Lee RY, McDermott CL, Engelberg RA, Curtis JR. Methods to avoid ICU admission when it does not align with patient and family preferences: a pragmatic review. Lancet Respir Med. 2019 May 17; S2213-2600(19)30170-5. PMID: 31122895.
Lee RY, Brumback LC, Sathitratanacheewin S, Lober WB, Modes ME, Lynch YT, Ambrose CI, Sibley J, Vranas KC, Sullivan DR, Engelberg RA, Curtis JR, Kross EK. Association of physician orders for life sustaining treatment with ICU admission among patients hospitalized near the end of life. JAMA. 2020;323(10):950-960. PMID: 32062674.
Modes ME, Engelberg RA, Downey L, Nielsen EL, Curtis JR, Kross EK. Did a goals-of-care discussion happen? Differences in the occurrence of goals-of-care discussions as reported by patients, clinicians, and in the electronic health record. J Pain Symptom Manage. 2019 Feb;57(2):251-259. PMID: 30391656; PMCID:PMC6348015.
Modes ME, Heckbert SR, Engelberg RA, Nielsen EL, Curtis JR, Kross EK. Patient-reported receipt of goal-concordant care among seriously ill outpatients-prevalence and associated factors. J Pain Symptom Manage. 2020 Oct;60(4):765-773. PMID: 32389606; PMCID: PMC7508896.
McDermott CL, Engelberg RA, Sibley J, Sorror M, Curtis JR. The association between chronic conditions, end-of-life healthcare use and documentation of advance care planning among patients with cancer. J Pall Med. 2020 Oct; 23(10): 1335-1341. PMID: 32181689.
Steiner JM, Dhami A, Brown CE, Stout KK, Curtis JR, Engelberg RA, Kirkpatrick JN. Barriers and facilitators of palliative care and advance care planning in adults with congenital heart disease. Am J Cardiol , 2020 135:128-134. PMID: 32866444; PMCID: PMC7606779.
Steiner JM, Stout K, Soine L, Kirkpatrick JN, Curtis JR. Perspectives on advance care planning and palliative care among adults with congenital heart disease. Congenit Heart Dis. 2019 May;14(3):403-409. PMCID: PMC6561330.
Sharma RK, Cameron KA, Zech JM, Jones SF, Curtis JR, Engelberg RA. Goals of care decisions by hospitalized patients with advanced cancer: Missed clinician opportunities for facilitating shared decision making. J Pain Symptom Manage. 2019 Aug;58(2):216- 223.
Resilience and Coping/Pediatric
Bogetz JF, Revette A, Rosenberg AR, DeCourcey D. “I could never prepare for something like the death of my own child”: Parent perspectives on preparedness at end of life for children with complex chronic conditions. J Pain Symptom Management, 2020.
Fladeboe KM, Scott S, Bradford MC, Ketterl TG, Yi-Frazier JP, Rosenberg AR. Sexual activity and substance use among adolescents and young adults receiving cancer treatment: a report from the PRISM randomized controlled trial. J Adolesc Young Adult Oncol. 2020 Oct;9(5):594-600. doi: 10.1089/jayao.2020.0001. Epub 2020 Apr 21. PMID: 32316824; PMCID: PMC7578176.
Lau N, Bradford MC, Steineck A, Junkins CC, Yi-Frazier JP, McCauley E, Rosenberg AR. Exploratory analysis of treatment response trajectories in the PRISM trial: Models of psychosocial care. Psychooncology. 2019 Jul;28(7):1470-1476. PMCID: PMC7307312.
Rosenberg AR, Steiner J, Lau N, Fladeboe K, Toprak D, Gmuca S, O'Donnell MB,Smith K, Brown CE, Yi-Frazier JP. From theory to patient care: a model for the development, adaptation, and testing of psychosocial interventions for patients with serious illness. J Pain Symptom Manage. 2021 Mar 5:S0885-3924(21)00225-6.doi: 10.1016/j.jpainsymman.2021.02.036. Epub ahead of print. PMID: 33677072.
Steineck A, Bradford MC, Lau N, Scott S, Yi-Frazier JP, Rosenberg AR. A psychosocial intervention's impact on quality of life in AYAs with cancer: a post hoc analysis from the Promoting Resilience in Stress Management (PRISM) randomized controlled trial. Children (Basel). 2019 Nov 2;6(11):124. PMCID: PMC6915541.
Taylor MR, Barton KS, Kingsley JM, Heunis J, Rosenberg AR. Defining a "good death" in pediatric oncology: a mixed methods study of healthcare providers. Children (Basel). 2020 Jul 31;7(8):86. PMCID: PMC7465817.
Taylor MR, Scott SR, Steineck A, Rosenberg AR. Objectifying the subjective: the use of heart rate variability as a psychosocial symptom biomarker in hospice and palliative care research. J Pain Symptom Manage. 2021 Apr 29:S0885-3924(21)
Creutzfeldt CJ, Schutz REC, Zahuranec DB, Lutz BJ, Curtis JR, Engelberg RA. Family presence for patients with severe acute brain injury and the influence of the COVID-19 pandemic. J Palliat Med. 2021 May;24(5):743-746.PMID: 33210984; PMCID: PMC8064964.
Rutz Voumard R, Kiker WA, Dugger KM, Engelberg RA, Borasio GD, Curtis JR, Jox RJ, Creutzfeldt CJ. Adapting to a new normal after severe acute brain injury: an observational cohort using a sequential explanatory design. Crit Care Med. 2021 Mar 17. doi: 10.1097/CCM.0000000000004947. Epub ahead of print. PMID: 33730742.
Advanced Kidney Disease and Palliative Care
O'Hare AM, Kurella Tamura M, Lavallee DC, et al. Assessment of self-reported prognostic expectations of people undergoing dialysis: United States Renal Data System Study of Treatment Preferences (USTATE). JAMA Intern Med. 2019.
Wong SPY, Boyapati S, Engelberg RA, Thorsteinsdottir B, Taylor JS, O'Hare AM. Experiences of US nephrologists in the delivery of conservative care to patients with advanced kidney disease: a national qualitative study. Am J Kidney Dis. 2020 Feb;75(2):167-176. doi: 10.1053/j.ajkd.2019.07.006. Epub 2019 Sep 27. PMID: 31570175; PMCID: PMC7012760.
Oestreich T, Sayre G, O'Hare AM, Curtis JR, Wong SPY. Perspectives on conservative care in advanced kidney disease: a qualitative study of US patients and family members. Am J Kidney Dis. 2021 Mar;77(3):355-364.e1. doi: 10.1053/j.ajkd.2020.07.026. Epub 2020 Sep 30. PMID: 33010356; PMCID: PMC8148987.
Interprofessional Communication and Collaboration
Abu-Rish Blakeney E, Ali, HN, Summerside, N, Lavallee, DC, Kragen, B, Willgerodt, MA, Weiner, BJ, Spacciante, L, & Zierler, BK. (2020). Sustaining improvements in relational coordination following team training and practice change: A longitudinal analysis. Health Care Management Review. https://doi.org/10.1097/HMR.0000000000000288
Jennerich AL, Hobler MR, Sharma RK, Engelberg RA, Curtis JR. Unplanned admission to the ICU: a qualitative study examining family member experiences. Chest. 2020 Oct;158(4):1482-1489. doi: 10.1016/j.chest.2020.05.554. Epub 2020Jun 2. PMID: 32502593; PMCID: PMC7545482.
Lavallee, DC, Abu-Rish Blakeney, E, Yu Y, Johnson R, Liner DA, Murphy NL, Pambianco, SB, Paquet R, Spacciante L, Woodard NY, Zierler BK. (2019). Engaging patients and families to transform heart failure care. Journal of Interprofessional Care. doi: 10.1080/13561820.2019.1696286
Novel and Innovative EHR Applications
Lee RY, Brumback LC, Lober WB, Sibley J, Nielsen EL, Treece PD, Kross EK, Loggers ET, Fausto JA, Lindvall C, Engelberg RA, Curtis JR. Identifying goals of care conversations in the electronic health record, using natural language processing and machine learning. Journal of Pain and Symptom Manage. 2021;61(1):136-142. PMID: 32858164.
McDermott CL, Engelberg RA, Woo C, Li L, Fedorenko C, Ramsey SD, Curtis JR. Novel data linkages to characterize palliative and end-of-life care: challenges and considerations. J Pain Symptom Manage. 2019 Nov; 58(5): 851-856. PMID: 31349037.
Steiner JM, Morse C, Lee RY, Curtis JR, Engelberg RA. Sensitivity and specificity of a machine learning algorithm to identify goals-of-care documentation for adults with congenital heart disease at the end of life. Journal of Pain and Symptom Manage. 2020;60(3):e33-e36. PMID: 32599151.
Cost of Care/Financial Stress
McDermott CL, Curtis JR, Sun Q, Fedorenko C, Kreizenbeck K, Ramsey SD. Polypharmacy, chemotherapy receipt, and medication-related out-of-pocket costs at end of life among commercially insured adults with advanced cancer. J Oncol Pharm Pract 2021; (Online ahead of print):10781552211006180. PMID: 33823685.
Khandelwal N, May P, Curtis JR. Financial stress after critical illness: an unintended consequence of high-intensity care. Intensive care medicine. 2020;46(1):107-109. PMCID: PMC7035881.
Khandelwal N, White L, et al. Health insurance and out-of-pocket costs in the last year of life among decedents utilizing the ICU. Critical care medicine. 2019;47(6):749-756. PMCID: PMC6522316.
Butler CR, Wong SPY, Vig EK, Neely CS, O'Hare AM. Professional roles and relationships during the COVID-19 pandemic: a qualitative study among US clinicians. BMJ Open. 2021 Mar 25;11(3):e047782. doi: 10.1136/bmjopen-2020-047782. PMID: 33766845; PMCID: PMC7995668.
Butler CR, Wong SPY, Wightman AG, O'Hare AM. US Clinicians' experiences and perspectives on resource limitation and patient care during the COVID-19 pandemic. JAMA Netw Open. 2020 Nov 2;3(11):e2027315. doi: 10.1001/jamanetworkopen.2020.27315. PMID: 33156349; PMCID: PMC7648254
Rosenberg AR. Cultivating deliberate resilience during the coronavirus disease 2019 pandemic. JAMA Pediatrics, 2020.
Rosenberg AR, Weaver MS, Fry A, Wiener L. Exploring the impact of the coronavirus pandemic on pediatric palliative care clinician personal and professional well-being: a qualitative analysis of US survey data. J Pain Symptom Manage, 2020.