Decisions Around Dementia and Surgery (DecADES)

Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers: A Mixed Methods Study

NIH # R01AG067507

Surgery often has benefits, such as reducing symptoms or extending life, but it is not without risk. Patients vary both in their tolerance of symptoms and of surgical risk. Surgical decision-making for persons living with dementia (PLWD) is challenging for numerous reasons, including limited longitudinal data on outcomes, an inability of the patient to fully participate in the discussion, and vague advance directives with multiple caregivers.  In the absence of evidence-based guidelines, clinicians struggle with recommendations, and patients and caregivers face uncertainty about the consequences of surgery.

Decisions Around Dementia and Surgery (DecADES) is designed to address these gaps by:

  • Examining the experiences and outcomes of PLWD who face surgery,
  • Understanding the patient, caregiver, and provider practices and challenges of surgical decision-making in clinical settings,
  • Improving decision-making about surgery and enhancing recovery when surgery is chosen.

Performance Period: 2020-2025

CONTACT INFORMATION:

Principal Investigator: Joel Weissman (jweissman@partners.org)

Project Director: Rachel Adler (radler1@bwh.harvard.edu)


Principal Investigator: Joel Weissman, PhD

Co-Investigators:

  • Harvard/MGB: Zara Cooper, MD; Stuart Lipsitz, PhD; John Hsu, MD; Lara Traeger, PhD; Karen Sepucha, PhD
  • UFl: Samir Shah, MD
  • UCSF: Emily Finlayson, MD
  • HSL:  Susan Mitchell, MD;  Dae Kim, MD
  • WakeForest:  Clancy Clarke, MD

Harvard/MGB Staff: 

  • Rachel Adler, ScD, RD, Project Director & Research Scientist
  • Lingwei Xiang, MPH, Biostatistical Analyst
  • Christina Sheu, Research Assistant

Research Overview

Surgery often has benefits, such as reducing symptoms or extending life, but it is not without risk. Patients vary both in their tolerance of symptoms and of surgical risk.  The concept of shared, patient preference-concordant surgical decision making potentially helps patients achieve their goals.

Surgical decision-making for persons living with dementia (PLWD) is challenging for numerous reasons, including limited longitudinal data on outcomes, an inability of the patient to fully participate in the discussion, and vague advance directives with multiple caregivers(surrogates).  In the absence of evidence-based guidelines, clinicians struggle with recommendations and patients and caregivers face uncertainty about the consequences of surgery.

Research on dementia and surgery is limited.  However, our pilot work has found that among common vascular procedures, PLWD had poorer surgical outcomes compared with persons w/o dementia. In other pilot work exploring the use of Advance Care Planning among PLWD facing surgery, we are finding that surgeons do not routinely consider dementia as an independent risk factor.  A stronger evidence base has the potential to facilitate surgical decision-making.

The proposed mixed methods study is designed to understand the epidemiology of surgery for PLWD, as well as patient, caregiver, and provider practices and challenges of surgical decision-making in clinical settings.  We focus on surgery because it is common among elderly PLWD, it often represents a critical inflection point in quality of life, and therefore is a fraught process for all involved.  The goal of the study is to improve decision-making and enhance recovery when surgery is chosen.

  • Aim 1) Develop the evidence base to understand the case mix and comparative outcomes of surgery provided to PLWDs.  We will use large databases to describe the epidemiology of inpatient surgery for PLWD from several perspectives intended to inform expectations and decision-making.  Case identification of dementia will take advantage of state-of-the-art methods from an ongoing R01.
  • Aim 2) Characterize surgical decision-making for PLWD in practice settings, as perceived by PLWD and their family caregivers, and providers/clinicians. Using case studies of a multi-regional selection of 12 health systems, we will explore in-depth: 1) Approaches to surgical decision-making for PLWDs; 2) Priorities and unmet needs of patients, families, and surgeons around surgical decision-making; 3) Facilitators and barriers to making patient preference-concordant care decisions.
  • Aim 3) Develop recommendations around surgical decision-making processes.  We will conduct a modified Delphi panel with national experts and stakeholders to develop recommendations about surgical and non-surgical options that mitigate the unique vulnerabilities of PLWD.

Team Bios

Joel Weissman, PhD

Joel S. Weissman, PhD, is deputy director and chief scientific officer of the Center for Surgery and Public Health at Brigham and Women’s Hospital, and professor of surgery in health policy at Harvard Medical SchoolIn addition to surgical health services, his research interests lie in the areas of patient-centered quality and safety, payment reform, disparities/vulnerable populations, uncompensated care, drug policy, comparative effectiveness research policy, and academic-industry relationships.

Clancy Clark, MD

Dr. Clark is Associate Professor of Surgery and Associate Program Director of the General Surgery training program. His practices include the treatment of pancreatic and liver cancers, and surgery for both benign and malignant disorders of the liver, bile duct, and pancreas. Additionally, Clancy’s interests incorporate the surgical management of acute and chronic pancreatitis.  Be it via research, seminars or surgeries, Clancy’s utmost goal is to improve patient quality of life during the continuum of a pancreatic or liver cancer diagnosis. Encouraged by the ever-evolving availability of therapies, treatments and resources, he’s dedicated to furthering GI-focused education, empowering patients and their families with available information, and impacting the health care industry at large.

Samir Shah, MD, MPH

Samir K Shah, MD, MPH is an assistant professor in the division of vascular surgery and endovascular therapy. Dr. Shah graduated from the University of Illinois at Chicago with highest distinction with both a bachelor of science in biochemistry and a bachelor of arts in philosophy. Upon graduation, he attended medical school at the Baylor College of Medicine, where he graduated with high honors and was inducted into the Alpha Omega Alpha honor society. He then pursued general surgery residency at the Cleveland Clinic in Cleveland, Ohio, where he performed with distinction and received several awards, including the Steiger Research Award and selection as an administrative chief resident. Dr. Shah then moved to Boston to complete a vascular surgery fellowship at Harvard’s Brigham and Women’s Hospital. He subsequently became an attending vascular surgeon at Brigham and Women’s Hospital and the Veterans Affairs Hospital and served as an instructor of surgery at Harvard Medical School.

Josh Lin, MD, MPH, ScD

Dr. Lin is a Pharmacoepidemiologist in the Division of Pharmacoepidemiology and Pharmacoeconomics at the Brigham and Women’s Hospital and a practicing hospitalist at the Massachusetts General Hospital. He is an Assistant Professor at Harvard Medical school and the Executive Director of the Mass General Brigham (MGB) Center for Integrated Healthcare Data Research. In this role, he has built a highly valuable research database, linking multiple health insurance claims data with a variety of clinical data from electronic health records of the MGB institutions. Leading a team of investigators, research scientists, and administrators, he has built an efficient infrastructure that makes these rich data sources readily available for researchers at Harvard Medical School to facilitate scientific discovery. As Principal Investigator of three NIH-funded R01 research projects (1R01LM012594, 1RF1AG063381 [1R01AG063381], and 1R01LM013204), his research has focused on optimal prescribing in vulnerable populations using large routine-care databases and to establish a rigorous and generalizable framework to optimize validity and precision of comparative effectiveness research with detailed evaluation of treatment effect heterogeneity using electronic health records and insurance claims data.

John Hsu, MD, MBA

John Hsu, MD, MBA, is the director of the Program for Clinical Economics and Policy Analysis within the Mongan Institute for Health Policy, which he joined in January 2010. He studies innovations in health care financing and delivery, and their effects on medical quality and efficiency. With a background in internal medicine, health services research and clinical epidemiology, and health care finance and management, Dr. Hsu brings clinical, population, and business perspectives to these studies. In his work, he primarily uses large automated and electronic health record data sets, often exploiting natural experiments from both clinical and behavioral economics perspectives. Dr. Hsu’s current work focuses on the interplay between benefit design and delivery system integration. He has collaborated closely with policy-makers and organizational decision-makers to help implement changes based on his research findings.

In 1999, after completing his medical and post-graduate training at the University of Pennsylvania, Dr. Hsu took a position at Kaiser Permanente in Oakland, CA, where most recently he served as director of the Center for Health Policy Studies in the Division of Research, Kaiser Permanente Medical Care Program. Since 2001, he has been continually funded by multiple R01 grants (including from the Agency for Healthcare Research and Quality [AHRQ], the National Institute on Aging, and National Institute of General Medical Sciences), and grants supported by the Centers for Disease Control and Prevention, The Commonwealth Fund, and the Medicare Payment Advisory Commission (MedPAC), among other sources. His AHRQ grant R01 HS013902, “Prescription Drug Cost-sharing: Effects on Affordability and Patient Safety,” was the best scored project at AHRQ in 2003. One article from this drug cost-sharing study received Article of the- ear awards from both AcademyHealth and the International Society of Pharmacoeconomics and Outcomes Research in 2007. Dr. Hsu has given numerous invited research and other presentations at national and international meetings, and to public and private health care stakeholders.

Susan Mitchell, MD, MPH

Susan L. Mitchell, MD, MPH, a geriatrician and health services researcher, is a Professor of Medicine at Harvard Medical School and Senior Scientist at Hebrew Senior Life Institute for Aging Research in Boston. She graduated from the University of Ottawa Medical School, has a Master’s degree in Public Health from Harvard University. Her research focuses on decision-making, outcomes and resource utilization in advanced dementia. She has been the Principal Investigator on many NIH funded grants that aim to improve the cared provided to older patients with advanced illness and their families.

Dae Kim, MD, MPH, ScD

Dr. Kim is a geriatrician and epidemiologist at the Hinda and Arthur Marcus Institute for Aging Research, Hebrew SeniorLife and Associate Professor of Medicine at Harvard Medical School.  He is also appointed at the Division of Gerontology, Department of Medicine, Beth Israel Deaconess Medical Center and the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women’s Hospital.

Dr. Kim’s long-term goal is to improve decisions about use of drug therapy and surgical procedures in older adults by incorporating frailty.  The main areas of my research include frailty, geriatric pharmacoepidemiology, and preoperative geriatric assessment.  My research has been supported by grants from the National Institute on Aging, Harvard Catalyst/Clinical and Translational Science Center, Medical Foundation, and John A. Hartford Foundation.

Emily Finlayson, MD, MS

Emily Finlayson, M.D., M.S., FACS,  Professor of Surgery and Health Policy, Vice Chair of Faculty Affairs and Development and Director of the UCSF Center for Surgery in Older Adults (CSOA). Her clinical areas of expertise include colon and rectal cancer, ulcerative colitis and Crohn’s disease, with a focus on minimally invasive surgical techniques.

Dr. Finlayson’s research focuses on using administrative data to examine ‘real world’ surgical outcomes in the elderly. For example, in an analysis of operative mortality in 1.2 million Medicare beneficiaries age 65 and older undergoing elective diagnostic high-risk surgery, she found that the risk of death increased dramatically with age. Her work examining the impact of age and comorbidity on operative mortality and survival among octogenarians undergoing cancer surgery demonstrated population-based mortality rates in octogenarians that were considerably higher than those reported in published reports from case series or trials. To better understand surgical risks in elders, she has explored the role of institutional factors in surgical outcomes. As is now widely recognized, her work demonstrated that provider procedure volume is inversely related to operative mortality for many high-risk operations and that this association was greatest in elder surgical patients.

In Dr. Finlayson’s most recent work, she uses a national nursing home registry to evaluate outcomes after surgery in long stay nursing home residents. She found that nursing home residents experienced high operative mortality for ‘low risk’ procedures. After operations to remove the gallbladder or appendix, more that 1 out of 10 nursing home residents died after surgery. She has also used this data to evaluate survival and functional status after colon cancer surgery and found that nursing home residents experience substantial and sustained functional decline after surgery. One-year survival was less than 50%.

The findings in her epidemiology research inspired the creation of the UCSF Center for Surgery in Older Adults. Under her leadership, the interdisciplinary team of stakeholders from surgery, anesthesia, rehabilitation services, geriatrics, palliative care, nursing, education, and health policy with expertise in quantitative research, qualitative research, and implementation science are working together to develop, implement, evaluate best practices in geriatric surgery through the development of a geriatric surgery registry. Our overarching goal is to discover best practices in geriatric surgery through patient-centered outcomes assessment, comparative effectiveness analyses, and interventional trials. In addition, we identify and explore barriers to delivery of optimal care with the aim to improve implementation of interdisciplinary patient-centered surgical care for older adults at UCSF and beyond.

Zara Cooper, MD, MSc

Zara Cooper, MD, MSc, FACS, is an acute care surgeon, trauma surgeon and surgical intensivist at Brigham and Women’s Hospital (BWH) where she serves as Kessler Director for the Center for Surgery and Public Health (CSPH). Dr. Cooper is an associate professor of surgery at Harvard Medical School, associate faculty at Ariadne Labs, and adjunct faculty at the Marcus Institute for Aging research, all in in Boston, MA. A graduate of the Mount Sinai School of Medicine, Dr. Cooper completed her General Surgery Residency and Critical Care Fellowship at BWH; a Trauma Fellowship at Harborview Medical Center and the University of Washington in Seattle; and training in hospice and palliative medicine at Dana-Farber Cancer Institute and BWH.

Her research aims to improve palliative and geriatric care for older seriously ill surgical patients. A national leader in surgical palliative care and geriatric trauma, she has authored over 150 peer-reviewed manuscripts, chapters, and abstracts and lectures nationally about surgical care in complex older patients.  She has mentored over 25 trainees and junior faculty in health services research.

Dr. Cooper is currently funded through the National Institutes of Aging Paul B. Beeson Leadership in Aging Award, The American Federation for Aging Research, and the National Palliative Care Research Center, the Department of Defense and the Defense Health Agency. She serves on numerous editorial boards, and committees for professional societies, MassGeneralBrigham Healthcare System, and the Board of Trustees of Brigham and Women’s Hospital.

Lara Traeger, PhD

Dr. Lara Traeger is a psychologist in the Cancer Center and the Behavioral Medicine Service at the Massachusetts General Hospital, and an Assistant Professor of Psychology in the Department of Psychiatry at Harvard Medical School. She is the Associate Director of the Qualitative & Mixed Methods Research Unit for the Mass General Division of Clinical Research. She received her Ph.D. in clinical psychology from the University of Miami, and completed her pre-doctoral and post-doctoral fellowships at the Massachusetts General Hospital.

Dr. Traeger’s clinical practice focuses on optimizing health and quality of life for adults with chronic medical conditions. Her research focus is on behavioral strategies to reduce disease- and treatment-related complications in patients with cancer. Dr. Traeger has over 90 published works, including peer-reviewed publications and book chapters. She has been the principal investigator of funded grants from the NIH/National Cancer Institute and the American Cancer Society, and serves on the editorial boards for peer-reviewed journals including  Health Psychology, Journal of Psychosocial Oncology, and Psycho-Oncology. Dr. Traeger supervises and mentors trainees in the Behavioral Medicine Service and the Cancer Outcomes Research and Education Program.

Karen Sepucha, PhD

Dr. Sepucha is the director of the Health Decision Sciences Center in the General Medicine Division at Massachusetts General Hospital and an associate professor in Medicine at Harvard Medical School. Her research and clinical interests involve developing and implementing tools and methods to improve the quality of significant medical decisions made by patients and clinicians. Dr. Sepucha was the medical editor for a series of five breast cancer patient decision aids (PtDAs) developed by the not-for-profit Foundation for Informed Medical Decision Making. The PtDAs have won seven media awards, and Dr. Sepucha has led the dissemination of these programs to dozens of academic and community cancer centers across the country. She is also responsible for efforts to implement shared decision making tools into primary and specialty care at Mass General. Her recent research has focused on the development of instruments to measure the quality of decisions. The decision quality instruments have been used in a national survey of medical decisions, and a subset of the items is being evaluated for use in CAHPS as part of the primary care medical home certification. Dr. Sepucha has been active in local, national and international efforts to improve decision quality, including the International Patient Decision Aids Standards collaboration. She has her PhD in Engineering-Economic Systems and Operations Research at Stanford University, with a focus in decision sciences.

Stuart Lipsitz, ScD

Stuart Lipsitz, ScD, is the director of biostatistics at CSPH. In this role, Stu supports the data requirements for the various programs at CSPH. He is also a biostatistician at Ariadne Labs as well as a collaborative statistician in the Division of General Internal medicine at Brigham and Women’s Hospital. He is a full professor at Brigham and Women’s Hospital and Harvard Medical School and dedicates his efforts to biostatistical methods and collaborative research. To date, he has served as co-author on over 300 publications and has more than 100 publications in top statistical journals. In the past, Lipsitz has held faculty appointments at the Harvard School of Public Health, the Dana-Farber Cancer Institute, and the Medical University of South Carolina. He received his B.A. from Mathematics University of South Carolina and his M.S. in Biostatistics from the University of North Carolina, Chapel Hill. Stu attained his Sc.D. in Biostatistics at Harvard University. He completed post-doctoral fellowships at Harvard School of Public Health and Dana-Farber Cancer Institute.