Dr. Rebecca A. Aslakson is an Associate Professor at Stanford University with appointments in the Department of Primary Care & Population Health in the Palliative Care Section as well as the Department of Anesthesiology, Perioperative and Pain Medicine. With a Summa Cum Laude B.A. from Washington University in St. Louis, an MD from Harvard Medical School–MIT, and an MSci degree with Distinction from the University of Ulster in Northern Ireland, Dr. Aslakson completed anesthesia residency at Massachusetts General Hospital and surgical critical care fellowship at The Johns Hopkins Hospital, where she then was on faculty from 2008-2017. In 2013, Dr. Aslakson obtained her PhD in Clinical Investigations from The Johns Hopkins Bloomberg School of Public Health with her dissertation concerning integration of palliative care in intensive care units. Triple boarded in anesthesia, surgical critical care, and palliative medicine, Dr. Aslakson is an active researcher and clinician; her goal is to improve delivery of palliative medicine, particularly to perioperative and critically ill populations. She has published over 60 peer-reviewed papers and chapters and received research awards from multiple national funders such as AHRQ, PCORI, the Foundation for Anesthesia Education and Research, and the National Palliative Care Research Society. Dr. Aslakson serves on national committees for professional societies including the American Academy of Hospice and Palliative Medicine (AAHPM), the American Society of Anesthesiologists (ASA), and the Society of Critical Care Medicine (SCCM). Dr. Aslakson has received national awards including the 2015 AAHPM Early Career Investigator Award and the 2014 ASA Presidential Scholar Award. Dr. Aslakson clinically attends in the Stanford Medical Center Medical-Surgical Intensive Care Unit in Stanford, CA and lives in Palo Alto, CA with her husband and two young sons.
Honors & Awards
Grenvik Family Award for Ethics, Society of Critical Care Medicine (2019)
Distinguished Alumni Award, The Johns Hopkins University (2017)
Presidential Citation, The Society of Critical Care Medicine (2017)
Presidential Citation, The Society of Critical Care Medicine (2016)
"40 under 40" National Leader, The American Academy of Hospice and Palliative Medicine (2015)
Early Career Investigator Award, The American Academy of Hospice and Palliative Medicine (2015)
Presidential Scholar Award, The American Society of Anesthesiologists (2014)
Speaker Award, The American Academy of Hospice and Palliative Medicine (2014)
Clinician Scientist Award, The Johns Hopkins School of Medicine (2013)
Outstanding New Educational Program Award, Institute for Educational Excellence (2013)
"Best in Baltimore" - Palliative Medicine, Baltimore Magazine (2011)
Young Investigator Speaker, Society of Critical Care Medicine - Anesthesiology Section (2011)
Excellence in Teaching in Surgical Critical Care, The Johns Hopkins School of Medicine Surgical Critical Care Fellowship (2008)
Hospitalist Award, Newton Wellesley Hospital (2004)
Top Surgical Intern, Department of Surgery - Newton Wellesley Hospital (2004)
Goerge Mitchell Scholarship, The US-Ireland Alliance (2000)
Graduate Student, International Achievement Summit (2000)
Barry Goldwater Scholarship, US Government (1997)
Arthur Holly Compton Scholarship, Washington University in St. Louis (1994)
National Science Scholarship, US Government (1994)
Robert C. Byrd Honors Scholarship, US Government (1994)
Boards, Advisory Committees, Professional Organizations
Committee Chair, National Research Committee - American Academy of Hospice and Palliative Medicine (2018 - Present)
Committee Chair, Committee on Palliative Medicine - American Society of Anesthesiologists (2018 - Present)
Member, Scientific Review Committee - Society of Critical Care Medicine (2016 - Present)
Nationally-Elected Member of Nominations Committee, American Academy of Hospice and Palliative Medicine (2016 - 2018)
Vice Chair, Committee on Palliative Medicine - American Society of Anesthesiologists (2016 - 2018)
Member, Committee on Excellence in Research - American Society of Anesthesiologists (2014 - 2017)
Member, National Research Committee - American Academy of Hospice and Palliative Medicine (2013 - 2018)
International Expert Guidelines Update Committee - Family Centered Care in the ICU, Society of Critical Care Medicine (2013 - 2017)
Member, Society of Critical Care Anesthesiologists (2010 - Present)
Member, American Academy of Hospice and Palliative Medicine (2010 - Present)
Member, International Anesthesia Research Society (2010 - Present)
Member, Society of Critical Care Medicine (2006 - Present)
Member, American Society of Anesthesiologists (2004 - Present)
Board Certification: Hospice and Palliative Medicine, American Board of Anesthesiology (2010)
Board Certification: Critical Care Medicine, American Board of Anesthesiology (2008)
Board Certification: Anesthesia, American Board of Anesthesiology (2008)
Fellowship:The Johns Hopkins Hospital Adult Critical Care Fellowship (2008) MD
Residency:Massachusetts General Hospital Anesthesiology Residency (2007) MA
Internship:Newton-Wellesley Hospital Transitional Year (2004) MA
Medical Education:Harvard Medical School (2003) MA
PhD, The Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD, Clinical Investigations (2013)
MD, Harvard Medical School - Massachusetts Institute of Technology Health, Sciences, and Technology Program, Boston, MA, Medicine (2003)
MSci, The University of Ulster, Coleraine, Northern Ireland, Biomedical Sciences (2001)
BA, Washington University in St. Louis, St. Louis, MO, Biology (major), Mathematics (minor) (1998)
Perioperative Palliative Care Surrounding Cancer Surgery for Patients & Their Family Members
The study goal is to compare surgeon-palliative care team co-management, versus surgeon alone management, of patients and family members preparing for major upper gastrointestinal cancer surgery. The study also aims to explore, using qualitative methods, the impact of surgeon-palliative care team co-management versus surgeon alone management on the perioperative care experience for patients, family members, surgeons, and palliative care clinicians.
Integrating Advance Care Planning Videos into Surgical Oncologic Care: A Randomized Clinical Trial.
Journal of palliative medicine
BACKGROUND: Preoperative advance care planning (ACP) may benefit patients undergoing major surgery.OBJECTIVE: To evaluate feasibility, safety, and early effectiveness of video-based ACP in a surgical population.DESIGN: Randomized controlled trial with two study arms.SETTING: Single, academic, inner-city tertiary care hospital.SUBJECTS: Patients undergoing major cancer surgery were recruited from nine surgical clinics. Of 106 consecutive potential participants, 103 were eligible and 92 enrolled.INTERVENTIONS: In the intervention arm, patients viewed an ACP video developed by patients, surgeons, palliative care clinicians, and other stakeholders. In the control arm, patients viewed an informational video about the hospital's surgical program.MEASUREMENTS: Primary Outcomes-ACP content and patient-centeredness in patient-surgeon preoperative conversation. Secondary outcomes-patient Hospital Anxiety and Depression Scale (HADS) score; patient goals of care; patient and surgeon satisfaction; video helpfulness; and medical decision maker designation.RESULTS: Ninety-two patients (target enrollment: 90) were enrolled. The ACP video was successfully integrated with no harm noted. Patient-centeredness was unchanged (incidence rate ratio [IRR]=1.06, confidence interval [0.87-1.3], p=0.545), although there were more ACP discussions in the intervention arm (23% intervention vs. 10% control, p=0.18). While slightly underpowered, study results did not signal that further enrollment would have yielded statistical significance. There were no differences in secondary outcomes other than the intervention video was more helpful (p=0.007).CONCLUSIONS: The ACP video was successfully integrated into surgical care without harm and was thought to be helpful, although video content did not significantly change the ACP content or patient-surgeon communication. Future studies could increase the ACP dose through modifying video content and/or who presents ACP.TRIAL REGISTRATION: clinicaltrials.gov Identifier NCT02489799.
View details for DOI 10.1089/jpm.2018.0209
View details for PubMedID 30964385
Patient reported outcomes for cancer patients receiving immunotherapy: opportunities for palliative care - A Systematic Review.
Journal of pain and symptom management
CONTEXT: Immune checkpoint inhibitors (ICIs) are increasingly used to treat a variety of cancers, but comparatively little is known about patient-reported outcomes (PROs) and health-related quality of life (HRQoL) among patients receiving these novel therapies.OBJECTIVES: We performed a systematic review to examine PROs and HRQoL among cancer patients receiving ICIs as compared to other anticancer therapies.METHODS: We systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using search terms representing ICIs, PROs and HRQoL on August 10, 2018. Eligible articles were required to involve cancer patients treated with ICIs and to report PROs and/or HRQoL data.RESULTS: We screened 1,453 references and included 15 publications representing 15 randomized controlled trials in our analysis. Studies included several cancer types (melanoma, lung cancer, genitourinary cancer, and head/neck cancer), utilized four different ICIs (nivolumab, pembrolizumab, atezolizumab, and ipilimumab), and compared ICIs to a wide range of therapies (chemotherapy, targeted therapies, other immunotherapy strategies, and placebo). Studies utilized a total of seven different PROs to measure HRQOL, most commonly the European Organisation for the Research and Treatment of Cancer core quality of life questionnaire (EORTC QLQ-C30) (n = 12, 80%). PRO data were reported in a variety of formats and at a variety of time points throughout treatment which made direct comparison challenging. Some trials (n=11, 73%) reported PROs on specific symptoms. In general, patients receiving ICIs had similar to improved HRQoL and experiences when compared to other therapies.CONCLUSION: Despite the broad clinical trials experience of ICI therapies across cancer types, relatively few randomized studies reported patient PROs and HRQoL data. Available data suggest that ICIs are well-tolerated in terms of HRQoL compared to other anticancer therapies although the conclusions are limited by the heterogeneity of trial designs and outcomes. Currently used instruments may fail to capture important symptomatology unique to ICIs, underscoring a need for PROs designed specifically for ICIs.
View details for DOI 10.1016/j.jpainsymman.2019.03.015
View details for PubMedID 30905677
Health-Care Providers' Perspectives on Decision-Making Among Seriously Ill Patients of South Asian Origin in the United States.
Journal of palliative care
BACKGROUND:: Persons of South Asian origin (SAs) are the fastest growing minority group in the United States. Culturally competent care for patients and families of SA origin necessitates an understanding of the cultural factors that affect decision-making for palliative and end-of-life care.OBJECTIVE:: To better understand health-care providers' perspectives on decision-making among seriously ill persons of SA origin.METHOD:: Data were collected in a US Midwestern city, predominantly in 2 hospital-based health-care systems along with a few interviews of private practitioners. Researchers conducted a thematic analysis of data. Transcripts were coded individually, coding disagreements resolved through discussion and themes arrived upon by consensus.RESULTS:: Health-care providers reported that numerous factors interact to influence decision-making among SAs. Patient-based factors include education, time spent in the United States, expectations of physician-directed care, and spiritual beliefs. Family-based factors include a norm of family-based decision-making and a complex distribution of decision-making responsibilities among family members. Provider-based factors include challenges reconciling SA and American approaches to decision-making. Community-based factors include negative attitudes and a lack of education regarding palliative care and the potential role of community support in health-care decision-making.CONCLUSIONS:: A rich cultural context influences health-care decision-making among seriously ill SAs. An understanding of this context will enhance providers' cultural competence and likely improve services to this growing population.
View details for DOI 10.1177/0825859719829480
View details for PubMedID 30808268
Introduction to a new Special Series for the Journal of Pain and Symptom Management - Science in Action: Evidence and opportunities for palliative care across diverse populations and care settings.
Journal of pain and symptom management
Practices to optimize palliative care delivery and new opportunities in which to integrate palliative care vary across populations and care settings. Systematic reviews are an efficient and methodologically rigorous approach to summarize existing research to identify both evidence-based best-practices as well as new areas for future research and clinical practice. This is the introduction to a special series of articles in which members of the AAHPM Research Committee report the results of circumscribed systematic reviews which in a specific population or care setting seek to: (a) summarize existing evidence for optimal palliative care practices or (b) identify opportunities where better palliative care delivery could improve patient and/or family outcomes.
View details for DOI 10.1016/j.jpainsymman.2019.02.005
View details for PubMedID 30763601
- "No Really, Dr. Surgeon, I Am NOT Here to Kill Your Patient; Let's Collaborate!'': The Development of Surgical Oncology Education Resources for Palliative Care Providers in the Perioperative Setting ELSEVIER SCIENCE INC. 2019: 488
- Surgical and Perioperative Palliative Care: Updates from 2018 ELSEVIER SCIENCE INC. 2019: 366–67
Impact of Accuracy of Survival Predictions on Quality of End-of-Life Care Among Patients With Metastatic Cancer Who Receive Radiation Therapy.
Journal of oncology practice
PURPOSE:: For patients treated with palliative radiation, we examined the association between life expectancy predictions by radiation oncologists and aggressive end-of-life care.MATERIALS AND METHODS:: We included decedents from a study that assessed the ability of oncologists to predict survival of patients with metastatic cancer who received radiation. We identified patients who died within 12 months of study enrollment to assess accuracy of predictions. Aggressive end-of-life care was defined by the National Quality Forum, ASCO Quality Oncology Practice Initiative metrics, and advanced radiation modalities in the last month of life. Survival predictions were categorized as follows: correct (< 12 months), 12 to 18 months, 18 to 24 months, and more than 24 months. We assessed association between prediction and aggressive end-of-life care using a generalized estimation equation.RESULTS:: Of 489 decedents, we identified 467 encounters with survival estimates. Overall, 156 decedents (32%) met at least one metric of aggressive end-of-life care. Factors associated with aggressive end-of-life care included younger age, female sex, primary cancer diagnosis, no brain metastases, and private insurance. In each encounter when an oncologist predicted survival, 363 predictions (78%) were correct (< 12 months), 54 (11%) incorrectly predicted 12 to 18 months, 27 (6%) predicted 18 to 24 months, and 23 (5%) predicted more than 24 months. Compared with patients who had encounters that had correct survival predictions, patients predicted to live more than 24 months were more likely to meet at least one metric of aggressive end-of-life care (odds ratio, 2.55; 95% CI, 1.09 to 5.99; P = .03).CONCLUSION:: Inaccurate survival predictions by oncologists are associated with more aggressive end-of-life care for patients with advanced cancer.
View details for DOI 10.1200/JOP.18.00516
View details for PubMedID 30620629
- Advance care planning needs in patients with glioblastoma undergoing radiotherapy. Journal of pain and symptom management 2018
An advance care plan decision support video before major surgery: a patient- and family-centred approach.
BMJ supportive & palliative care
2018; 8 (2): 229–36
OBJECTIVE: Video-based advanc care planning (ACP) tools have been studied in varied medical contexts; however, none have been developed for patients undergoing major surgery. Using a patient- and family-centredness approach, our objective was to implement human-centred design (HCD) to develop an ACP decision support video for patients and their family members when preparing for major surgery.DESIGN AND METHODS: The study investigators partnered with surgical patients and their family members, surgeons and other health professionals to design an ACP decision support video using key HCD principles. Adapting Maguire's HCD stages from computer science to the surgical context, while also incorporating Elwyn et al's specifications for patient-oriented decision support tool development, we used a six-stage HCD process to develop the video: (1) plan HCD process; (2) specify where video will be used; (3) specify user and organisational requirements; (4) produce and test prototypes; (5) carry out user-based assessment; (6) field test with end users.RESULTS: Over 450 stakeholders were engaged in the development process contributing to setting objectives, applying for funding, providing feedback on the storyboard and iterations of the decision tool video. Throughout the HCD process, stakeholders' opinions were compiled and conflicting approaches negotiated resulting in a tool that addressed stakeholders' concerns.CONCLUSIONS: Our patient- and family-centred approach using HCD facilitated discussion and the ability to elicit and balance sometimes competing viewpoints. The early engagement of users and stakeholders throughout the development process may help to ensure tools address the stated needs of these individuals.TRIAL REGISTRATION NUMBER: NCT02489799.
View details for DOI 10.1136/bmjspcare-2017-001449
View details for PubMedID 29555812
- Advanced Practice Registered Nurse-directed Care Coordination Interventions and Outreach After Critical Illness JNP-JOURNAL FOR NURSE PRACTITIONERS 2018; 14 (6): E121–E125
A review of paper-based advance care planning aids
BMC PALLIATIVE CARE
2018; 17: 54
Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid.Paper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid.Fifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed.Most existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.
View details for DOI 10.1186/s12904-018-0298-0
View details for Web of Science ID 000428930700002
View details for PubMedID 29587711
View details for PubMedCentralID PMC5872554
Family companions' involvement during pre-surgical consent visits for major cancer surgery and its relationship to visit communication and satisfaction.
Patient education and counseling
To examine the association between family companion presence during pre-surgical visits to discuss major cancer surgery and patient-provider communication and satisfaction.Secondary analysis of 61 pre-surgical visit recordings with eight surgical oncologists at an academic tertiary care hospital using the Roter Interaction Analysis System (RIAS). Surgeons, patients, and companions completed post-visit satisfaction questionnaires. Poisson and logistic regression models assessed differences in communication and satisfaction when companions were present vs. absent.There were 46 visits (75%) in which companions were present, and 15 (25%) in which companions were absent. Companion communication was largely emotional and facilitative, as measured by RIAS. Companion presence was associated with more surgeon talk (IRR 1.29, p = 0.006), and medical information-giving (IRR 1.41, p = 0.001). Companion presence was associated with less disclosure of lifestyle/psychosocial topics by patients (IRR 0.55, p = 0.037). In adjusted analyses, companions' presence was associated with lower levels of patient-centeredness (IRR 0.77, p 0.004). There were no differences in patient or surgeon satisfaction based on companion presence.Companions' presence during pre-surgical visits was associated with patient-surgeon communication but was not associated with patient or surgeon satisfaction.Future work is needed to develop interventions to enhance patient-companion-provider interactions in this setting.
View details for DOI 10.1016/j.pec.2018.01.011
View details for PubMedID 29402574
Developing the Storyline for an Advance Care Planning Video for Surgery Patients: Patient-Centered Outcomes Research Engagement from Stakeholder Summit to State Fair
JOURNAL OF PALLIATIVE MEDICINE
2018; 21 (1): 89–94
Patient-centered outcomes research (PCOR) methods and social learning theory (SLT) require intensive interaction between researchers and stakeholders. Advance care planning (ACP) is valuable before major surgery, but a systematic review found no extant perioperative ACP tools. Consequently, PCOR methods and SLT can inform the development of an ACP educational video for patients and families preparing for major surgery.The objective is to develop and test acceptability of an ACP video storyline.The design is a stakeholder-guided development of the ACP video storyline. Design-thinking methods explored and prioritized stakeholder perspectives. Patients and family members evaluated storyboards containing the proposed storyline.The study was conducted at hospital outpatient surgical clinics, in-person stakeholder summit, and the 2014 Maryland State Fair.Measurements are done through stakeholder engagement and deidentified survey.Stakeholders evaluated and prioritized evidence from an environmental scan. A surgeon, family member, and palliative care physician team iteratively developed a script featuring 12 core themes and worked with a medical graphic designer to translate the script into storyboards. For 10 days, 359 attendees of the 2014 Maryland State Fair evaluated the storyboards and 87% noted that they would be "very comfortable" or "comfortable" seeing the storyboard before major surgery, 89% considered the storyboards "very helpful" or "helpful," and 89% would "definitely recommend" or "recommend" this story to others preparing for major surgery.Through an iterative process utilizing diverse PCOR engagement methods and informed by SLT, storyboards were developed for an ACP video. Field testing revealed the storyline to be highly meaningful for surgery patients and family members.
View details for DOI 10.1089/jpm.2017.0106
View details for Web of Science ID 000419668600016
View details for PubMedID 28817359
A patient and community-centered approach selecting endpoints for a randomized trial of a novel advance care planning tool.
Patient preference and adherence
2018; 12: 241–49
Despite a movement toward patient-centered outcomes, best practices on how to gather and refine patients' perspectives on research endpoints are limited. Advanced care planning (ACP) is inherently patient centered and would benefit from patient prioritization of endpoints for ACP-related tools and studies.This investigation sought to prioritize patient-centered endpoints for the content and evaluation of an ACP video being developed for patients undergoing major surgery. We also sought to highlight an approach using complementary engagement and research strategies to document priorities and preferences of patients and other stakeholders.Endpoints identified from a previously published environmental scan were operationalized following rating by a caregiver co-investigator, refinement by a patient co-investigator, review by a stakeholder committee, and validation by patients and family members. Finalized endpoints were taken to a state fair where members of the public who indicated that they or a loved one had undergone major surgery prioritized their most relevant endpoints and provided comments.Of the initial 50 ACP endpoints identified from the review, 12 endpoints were selected for public prioritization. At the state fair, 359 individuals prioritized the endpoints, the highest ranking of which was having a meaningful conversation with a physician before surgery (57%).Using a novel combination of engagement and research techniques provided the opportunity to understand which endpoints were most important to patients and families and fostered framework development clarifying the differential contributions of engagement and research. Results from this study ultimately changed the content and evaluation of the ACP video.
View details for DOI 10.2147/PPA.S150663
View details for PubMedID 29445267
View details for PubMedCentralID PMC5810536
- A qualitative exploration of companion involvement in the presurgical consent visit for patients undergoing major surgery for advanced cancer. AMER SOC CLINICAL ONCOLOGY. 2017
- Looking beyond the Tip of a Tusk: Balancing the Evidence in Prognosis-related Communication AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE 2017; 196 (7): 803–4
Preventing Harm in the ICU-Building a Culture of Safety and Engaging Patients and Families
CRITICAL CARE MEDICINE
2017; 45 (9): 1531–37
Preventing harm remains a persistent challenge in the ICU despite evidence-based practices known to reduce the prevalence of adverse events. This review seeks to describe the critical role of safety culture and patient and family engagement in successful quality improvement initiatives in the ICU. We review the evidence supporting the impact of safety culture and provide practical guidance for those wishing to implement initiatives aimed at improving safety culture and more effectively integrate patients and families in such efforts.Literature review using PubMed including evaluation of key studies assessing large-scale quality improvement efforts in the ICU, impact of safety culture on patient outcomes, methodologies for quality improvement commonly used in healthcare, and patient and family engagement. Print and web-based resources from leading patient safety organizations were also searched.Our group completed a review of original studies, review articles, book chapters, and recommendations from leading patient safety organizations.Our group determined by consensus which resources would best inform this review.A strong safety culture is associated with reduced adverse events, lower mortality rates, and lower costs. Quality improvement efforts have been shown to be more effective and sustainable when paired with a strong safety culture. Different methodologies exist for quality improvement in the ICU; a thoughtful approach to implementation that engages frontline providers and administrative leadership is essential for success. Efforts to substantively include patients and families in the processes of quality improvement work in the ICU should be expanded.Efforts to establish a culture of safety and meaningfully engage patients and families should form the foundation for all safety interventions in the ICU. This review describes an approach that integrates components of several proven quality improvement methodologies to enhance safety culture in the ICU and highlights opportunities to include patients and families.
View details for DOI 10.1097/CCM.0000000000002556
View details for Web of Science ID 000407843600033
View details for PubMedID 28640023
Utilising advance care planning videos to empower perioperative cancer patients and families: a study protocol of a randomised controlled trial.
2017; 7 (5): e016257
INTRODUCTION: Despite positive health outcomes associated with advance care planning (ACP), little research has investigated the impact of ACP in surgical populations. Our goal is to evaluate how an ACP intervention video impacts the patient centredness and ACP of the patient-surgeon conversation during the presurgical consent visit. We hypothesise that patients who view the intervention will engage in a more patient-centred communication with their surgeons compared with patients who view a control video.METHODS AND ANALYSIS: Randomised controlled superiority trial of an ACP video with two study arms (intervention ACP video and control video) and four visits (baseline, presurgical consent, postoperative 1week and postoperative 1month). Surgeons, patients, principal investigator and analysts are blinded to the randomisation assignment.SETTING: Single, academic, inner city and tertiary care hospital. Data collection began July 16, 2015 and continues to March 2017.PARTICIPANTS: Patients recruited from nine surgical oncology clinics who are undergoing major cancer surgery.INTERVENTIONS: In the intervention arm, patients view a patient preparedness video developed through extensive engagement with patients, surgeons and other stakeholders. Patients randomised to the control arm viewed an informational video about the hospital surgical programme.MAIN OUTCOMES AND MEASURES: Primary Outcome: Patient centredness and ACP of patient-surgeon conversations during the presurgical consent visit as measured through the Roter Interaction Analysis System.SECONDARY OUTCOMES: patient Hospital Anxiety and Depression Scale score; patient goals of care; patient, companion and surgeon satisfaction; video helpfulness; medical decision maker designation; and the frequency patients watch the video. Intent-to-treat analysis will be used to assess the impact of video assignment on outcomes. Sensitivity analyses will assess whether there are differential effects contingent on patient or surgeon characteristics.ETHICS AND DISSEMINATION: This study has been approved by the Johns Hopkins School of Medicine institutional review board and is registered on clinicaltrials.gov (NCT02489799, First received: July 1, 2015).TRIAL REGISTRATION NUMBER: clinicaltrials.gov, NCT02489799.
View details for DOI 10.1136/bmjopen-2017-016257
View details for PubMedID 28592584
Why don't end-of-life conversations go viral? A review of videos on YouTube
BMJ SUPPORTIVE & PALLIATIVE CARE
2017; 7 (2): 197–204
To identify videos on YouTube concerning advance care planning (ACP) and synthesise existing video content and style elements.Informed by stakeholder engagement, two researchers searched YouTube for ACP videos using predefined search terms and snowballing techniques. Videos identified were reviewed and deemed ineligible for analysis if they: targeted healthcare professionals; contained irrelevant content; focused on viewers under the age of 18; were longer than 7 min in duration; received fewer than 150 views; were in a language other than English; or were a duplicate version. For each video, two investigators independently extracted general information as well as video content and stylistic characteristics.The YouTube search identified 23 100 videos with 213 retrieved for assessment and 42 meeting eligibility criteria. The majority of videos had been posted to YouTube since 2010 and produced by organisations in the USA (71%). Viewership ranged from 171 to 10 642. Most videos used a documentary style and featured healthcare providers (60%) rather than patients (19%) or families (45%). A minority of videos (29%) used upbeat or hopeful music. The videos frequently focused on completing legal medical documents (86%).None of the ACP videos on YouTube went viral and a relatively small number of them contained elements endorsed by stakeholders. In emphasising the completion of legal medical documents, videos may have failed to support more meaningful ACP. Further research is needed to understand the features of videos that will engage patients and the wider community with ACP and palliative and end-of-life care conversations.
View details for DOI 10.1136/bmjspcare-2014-000805
View details for Web of Science ID 000427331600013
View details for PubMedID 26182948
Communication Challenges and Strategies of US Health Professionals Caring for Seriously Ill South Asian Patients and Their Families
JOURNAL OF PALLIATIVE MEDICINE
2017; 20 (6): 611–17
While effective communication is important in the care of seriously ill patients, little is known about communication challenges faced by healthcare providers serving U.S. patients of South Asian origin, one of the fastest growing demographic groups in the United States.Researchers sought to examine communication challenges faced by healthcare providers serving seriously ill South Asian patients and their families and present strategies recommended by providers for effective communication.Researchers conducted a thematic analysis of qualitative data obtained through focus groups and individual interviews with 57 healthcare providers, including physicians, social workers, nurses, chaplains, and others drawn from different healthcare settings in one Midwestern city.While acknowledging the considerable diversity within the U.S. South Asian community, participants discussed three types of communication challenges they often encounter when serving this population: ensuring effective interpretation, identifying a spokesperson, and challenges posed by different cultural norms. Participants shared strategies to address these challenges such as proactively inquiring about patients' and families' preferences and encouraging early appointment of a spokesperson.While providers should avoid stereotyping patients, an awareness of common challenges and adoption of recommended strategies to address these challenges may enhance the provision of culturally responsive person-centered services for seriously ill South Asian patients and their families receiving care in the United States.
View details for DOI 10.1089/jpm.2016.0167
View details for Web of Science ID 000402038700009
View details for PubMedID 28253067
- Being CAREFuL about improving end-of-life care in hospitals. Lancet (London, England) 2017
Perioperative Provider Perspectives on Advance Care Planning for Surgical Patients
LIPPINCOTT WILLIAMS & WILKINS. 2017: 960
View details for Web of Science ID 000412683000490
Integrating Palliative and Surgical Care - Perioperative Provider Insights in Overcoming Barriers
LIPPINCOTT WILLIAMS & WILKINS. 2017: 961
View details for Web of Science ID 000412683000491
Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes
JOURNAL OF PALLIATIVE MEDICINE
2017; 20 (4): 329–43
Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members.The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps.We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future.We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions.The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members.
View details for DOI 10.1089/jpm.2016.0567
View details for Web of Science ID 000398452000008
View details for PubMedID 28379812
View details for PubMedCentralID PMC5385425
Operationalizing the Measuring What Matters Spirituality Quality Metric in a Population of Hospitalized, Critically Ill Patients and Their Family Members
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
2017; 53 (3): 650–55
Measuring What Matters (MWM) quality indicators support measurement of the percentage of patients who have spiritual discussions, if desired.The objective of this study was to 1) determine the ease of, and barriers to, prospectively collecting MWM spirituality quality measure data and 2) further explore the importance of spirituality in a seriously ill, hospitalized population of critically ill patients and their family members.Electronic medical record (EMR) review and cross-sectional survey of intensive care unit (ICU) patients and their family members from October to December 2015. Participants were in four adult ICUs totaling 68 beds at a single academic, urban, tertiary care center which has ICU-assigned chaplains and an in-house, 24-hour, on-call chaplain.All patients had a "Spiritual Risk Screen" which included two questions identifying patient religion and whether a chaplain visit was desired. Approximately 2/3 of ICU patients were eligible, and there were 144 respondents (50% female; 57% patient and 43% family member), with the majority being Caucasian or African American (68% and 21%, respectively). Common religious identifications were Christian or no faith tradition (76% and 11%, respectively). Approximately half of patients had an EMR chaplain note although it did not document presence of a "spiritual discussion." No study patients received palliative care consultation. A majority (85%) noted that spirituality was "important to them" and that prevalence remained high across respondent age, race, faith tradition, or admitting ICU.Operationalizing the MWM spirituality quality indicator was challenging as elements of a "spiritual screening" or documentation of a "spiritual discussion" were not clearly documented in the EMR. The high prevalence of spirituality among respondents validates the importance of spirituality as a potential quality metric.
View details for DOI 10.1016/j.jpainsymman.2016.12.323
View details for Web of Science ID 000397122200015
View details for PubMedID 28042059
Understanding Cultural Gaps and Disparities in Advanced Illness Care
GENERATIONS-JOURNAL OF THE AMERICAN SOCIETY ON AGING
2017; 41 (1): 10–15
View details for Web of Science ID 000401718100003
- Critical Care Nurses' Perceptions of and Experiences With Chaplains Implications for Nurses' Role in Providing Spiritual Care JOURNAL OF HOSPICE & PALLIATIVE NURSING 2017; 19 (1): 41–48
Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief.
Journal of pain and symptom management
2017; 54 (6): 961–72.e16
Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level.The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation.We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain.We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools.Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.
View details for DOI 10.1016/j.jpainsymman.2017.04.022
View details for PubMedID 28818633
Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU
CRITICAL CARE MEDICINE
2017; 45 (1): 103–28
To provide clinicians with evidence-based strategies to optimize the support of the family of critically ill patients in the ICU.We used the Council of Medical Specialty Societies principles for the development of clinical guidelines as the framework for guideline development. We assembled an international multidisciplinary team of 29 members with expertise in guideline development, evidence analysis, and family-centered care to revise the 2007 Clinical Practice Guidelines for support of the family in the patient-centered ICU. We conducted a scoping review of qualitative research that explored family-centered care in the ICU. Thematic analyses were conducted to support Population, Intervention, Comparison, Outcome question development. Patients and families validated the importance of interventions and outcomes. We then conducted a systematic review using the Grading of Recommendations, Assessment, Development and Evaluations methodology to make recommendations for practice. Recommendations were subjected to electronic voting with pre-established voting thresholds. No industry funding was associated with the guideline development.The scoping review yielded 683 qualitative studies; 228 were used for thematic analysis and Population, Intervention, Comparison, Outcome question development. The systematic review search yielded 4,158 reports after deduplication and 76 additional studies were added from alerts and hand searches; 238 studies met inclusion criteria. We made 23 recommendations from moderate, low, and very low level of evidence on the topics of: communication with family members, family presence, family support, consultations and ICU team members, and operational and environmental issues. We provide recommendations for future research and work-tools to support translation of the recommendations into practice.These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care.
View details for DOI 10.1097/CCM.0000000000002169
View details for Web of Science ID 000390619000012
View details for PubMedID 27984278
Implementing Evidence-Based Palliative Care Programs and Policy for Cancer Patients: Epidemiologic and Policy Implications of the 2016 American Society of Clinical Oncology Clinical Practice Guideline Update
2017; 39 (1): 123–31
The American Society of Clinical Oncology (ASCO) recently convened an Ad Hoc Palliative Care Expert Panel to update a 2012 provisional clinical opinion by conducting a systematic review of clinical trials in palliative care in oncology. The key takeaways from the updated ASCO clinical practice guidelines (CPGs) are that more people should be referred to interdisciplinary palliative care teams and that more palliative care specialists and palliative care-trained oncologists are needed to meet this demand. The following summary statement is based on multiple randomized clinical trials: "Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs" (J Clin Oncol. 2017;35(1):96). This paper addresses potential epidemiologic and policy interpretations and implications of the ASCO CPGs. Our review of the CPGs demonstrates that to have clinicians implement these guidelines, there is a need for support from stakeholders across the health-care continuum, health system and institutional change, and changes in health-care financing. Because of rising costs and the need to improve value, the need for coordinated care, and change in end-of-life care patterns, many of these changes are already underway.
View details for DOI 10.1093/epirev/mxw002
View details for Web of Science ID 000402086100009
View details for PubMedID 28472313
- Mentoring in Palliative Nursing JOURNAL OF HOSPICE & PALLIATIVE NURSING 2016; 18 (6): 488–95
- Patient-Centered Outcomes Research-Opportunities for Novel, Innovative, and Transformative Partnerships With Patients and Their Families JAMA SURGERY 2016; 151 (10): 945–46
- Beyond "Rationing" and "Death Panels": The Potential "Escape Fire" of Palliative Care CRITICAL CARE MEDICINE 2016; 44 (8): 1605-1606
PREVALENCE OF SPIRITUAL NEEDS AMONG CRITICALLY ILL ADULTS AND THEIR FAMILY MEMBERS
LIPPINCOTT WILLIAMS & WILKINS. 2016
View details for Web of Science ID 000403582200350
Church-Based Health Promotion Focused on Advance Care Planning and End-of-Life Care at Black Baptist Churches: A Cross-Sectional Survey
JOURNAL OF PALLIATIVE MEDICINE
2016; 19 (2): 190–94
African Americans with serious illnesses receive substandard palliative care (PC) and end-of-life care (EOLC) with a disproportionate number having worse symptom-related suffering, poorer health-related communication and knowledge of advance care planning (ACP) wishes, and increased utilization of hospitals and intensive care units at EOL. Previous research emphasizes the importance of spirituality and the church in African American communities. We are pioneering an innovative partnership between two Baptist African American churches and an interdisciplinary research team with a goal of developing and implementing a community-based, church-centered ACP program. We hypothesize that a church-based approach-which embraces and celebrates religion and spirituality as a means to discuss ACP and EOLC-can improve the quality of EOLC.The aim of the study was to determine parishioner experiences and beliefs about EOLC and their potential desire for a church-based program that would address ACP and EOLC.A cross-sectional survey of parishioners at two large black Baptist churches across four weekend services in December 2014 was conducted using a five-question, Likert-scale survey completed on a note card.There were 930 responses submitted. Approximately 70% of parishioners care, or have cared, for someone with multiple medical problems and/or who is dying, and a vast majority (97%) believed that good EOLC is "important" or "very important." Only 60% of respondents noted having spoken with someone who could make decisions for them if they are unable to speak for themselves and that number decreased to 28% of respondents between the ages of 65 and 80. A majority (93%) would welcome church-provided information about EOLC.A majority of parishioners care for someone with multiple health problems and believe that good EOLC is important. However, significantly less had designated a surrogate decision maker, particularly in parishioners over the age of 65. Respondents would welcome a church-based program focused on improving EOLC.
View details for DOI 10.1089/jpm.2015.0319
View details for Web of Science ID 000375270400013
View details for PubMedID 26840855
- The Worst Possible Sorrow. and a Most Treasured Gift: Ways that Palliative Care and Palliative Care Providers Can Support Organ Donors and Their Families and Organ Transplant Candidates Awaiting Donation ELSEVIER SCIENCE INC. 2016: 400–401
- Tasking the tailor to cut the coat: How to optimize individualized ICU-based palliative care? INTENSIVE CARE MEDICINE 2016; 42 (1): 119–21
EMPOWERING THE "CHEERERS": ROLE OF SURGICAL INTENSIVE CARE UNIT NURSES IN ENHANCING FAMILY RESILIENCE
AMERICAN JOURNAL OF CRITICAL CARE
2016; 25 (1): 39–45
Supporting family resilience, the ability of families to rebound from stressful events, is a goal of family nursing. Critical care nurses act as liaisons between patients' families and other clinicians and thus are uniquely situated to promote family resilience.To explore how nurses perceive the experiences of long-stay surgical intensive care unit patients and their families in order to gain insights on how nurses could cultivate family resilience.A qualitative study including semistructured interviews (n = 13) and 4 focus groups (n = 17) with nurses in 3 surgical intensive care units in a large teaching hospital.Three themes were identified: expectations, support, and communication. Nurses noted that clinicians' and families' unrealistic expectations regarding the patient's recovery can foster false hope. Nurses recognized families as "cheerers" who provide support by being involved in patient care and observed how extensive family involvement can be beneficial to patients but overwhelming for families. Nurses noted that communication among providers, families, and patients is the cornerstone of creating meaningful relationships. Nurses stated that with many teams involved, discrepancies in information can occur and often confuse and disturb patients' families. Thus, nurses identified ways to enhance family resilience through routine and consistent communication.Nurses note unique stresses faced by families of patients in surgical intensive care units. Using the family resilience model, nurses can identify and enhance key family resilience factors.
View details for DOI 10.4037/ajcc2016926
View details for Web of Science ID 000371229200012
View details for PubMedID 26724292
- Time-Limited Trials in the ICU: Seeing the Forest Beyond the Bark and Trees CRITICAL CARE MEDICINE 2015; 43 (12): 2676–78
- Critical Care Medicine CRITICAL CARE MEDICINE 2015; 43 (3): 700–701
Systematic Review of Patient-Reported Outcome Measures in Clinical Vestibular Research
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION
2015; 96 (2): 357–65
To identify the most commonly used patient-reported outcome (PRO) measures in clinical vestibular research, and to assess their test characteristics and applicability to the study of age-related vestibular loss in clinical trials.We performed a systematic review of the PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases from 1950 to August 13, 2013.PRO measures were defined as outcomes that capture the subjective experience of the patient (eg, symptoms, functional status, health perceptions, quality of life). Two independent reviewers selected studies that used PRO measures in clinical vestibular research. Disparities were resolved with consensus between the reviewers. Of 2260 articles initially found in the literature search, 255 full-text articles were retrieved for assessment. Of these, 104 met inclusion criteria for data collection.PRO measures were identified by 2 independent reviewers. The 4 most commonly used PROs were evaluated for their applicability to the condition of age-related vestibular loss. Specifically, for these 4 PROs, data were collected pertaining to instrument test-retest reliability, item domains, and target population of the instrument.A total of 50 PRO instruments were identified. The 4 most frequently used PROs were the Dizziness Handicap Inventory, Activities-specific Balance Confidence scale, Vertigo Symptom Scale-short form, and visual analog scale. Of these 4 PROs, 3 were validated for use in patients with vestibular disease and 1 was validated in community-dwelling older individuals with balance impairments. Items across the 4 PROs were categorized into 3 domains based on the International Classification of Functioning, Disability and Health: activity, participation, and body functions and structures.None of the most commonly used PRO instruments were validated for use in community-dwelling older adults with age-related vestibular loss. Nevertheless, the 3 common domains of items identified across these 4 PRO instruments may be generalizable to older adults and provide a basis for developing a PRO instrument designed to evaluate the effectiveness of interventions targeted toward age-related vestibular loss.
View details for DOI 10.1016/j.apmr.2014.09.017
View details for Web of Science ID 000348751800024
View details for PubMedID 25305629
View details for PubMedCentralID PMC4306632
- Exploring the Comparative Effectiveness of Video and Paper Decision Support Tools for Advance Care Planning: A Multiple Criteria Decision Analysis ELSEVIER SCIENCE INC. 2015: 409–10
- "Are You My Mentor?'' A Panel Discussion Featuring an All-Star Cast of AAHPM and HPNA Mentors and Mentees ELSEVIER SCIENCE INC. 2015: 342–43
The Impact Of A Required Critical Care Clerkship On Students' End-Of-Life Education: An Interim Analysis
AMER THORACIC SOC. 2015
View details for Web of Science ID 000377582807537
Promoting perioperative advance care planning: a systematic review of advance care planning decision aids
JOURNAL OF COMPARATIVE EFFECTIVENESS RESEARCH
2015; 4 (6): 615–50
This systematic review identifies possible decision aids that promote perioperative advance care planning (ACP) and synthesizes the available evidence regarding their use. Using PubMed, EMBASE, Cochrane, SCOPUS, Web of Science, CINAHL, PsycINFO and Sociological Abstracts, researchers identified and screened articles for eligibility. Data were abstracted and risk of bias assessed for included articles. Thirty-nine of 5327 articles satisfied the eligibility criteria. Primarily completed in outpatient ambulatory populations, studies evaluated a variety of ACP decision aids. None were evaluated in a perioperative population. Fifty unique outcomes were reported with no head-to-head comparisons conducted. Findings are likely generalizable to a perioperative population and can inform development of a perioperative ACP decision aid. Future studies should compare the effectiveness of ACP decision aids.
View details for DOI 10.2217/cer.15.43
View details for Web of Science ID 000365751000008
View details for PubMedID 26346494
DESCRIPTIVE EXPERIENCES OF SURGICAL CRITICAL CARE BY PATIENTS AND CAREGIVERS FOLLOWING DISCHARGE
LIPPINCOTT WILLIAMS & WILKINS. 2014
View details for Web of Science ID 000346211800572
The Changing Role of Palliative Care in the ICU
CRITICAL CARE MEDICINE
2014; 42 (11): 2418–28
Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation.We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files.Selected studies included all English-language articles concerning adult patients using the search terms 'intensive care' or 'critical care' with 'palliative care,' 'supportive care,' 'end-of-life care,' or 'ethics.': After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus.Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and families face challenges after discharge from intensive care.Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures.
View details for DOI 10.1097/CCM.0000000000000573
View details for Web of Science ID 000343889000024
View details for PubMedID 25167087
View details for PubMedCentralID PMC4695994
- Rebecca A. Aslakson, M.D., Ph.D., Recipient of the 2014 Presidential Scholar Award ANESTHESIOLOGY 2014; 121 (4): 692-694
Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study
BMC PALLIATIVE CARE
2014; 13: 32
High-risk surgery patients may lose decision-making capacity as a result of surgical complications. Advance care planning prior to surgery may be beneficial, but remains controversial and is hindered by a lack of appropriate decision aids. This study sought to examine stakeholders' views on the appropriateness of using decision aids, in general, to support advance care planning among high-risk surgery populations and the design of such a decision aid.Key informants were recruited through purposive and snowball sampling. Semi-structured interviews were conducted by phone until data collected reached theoretical saturation. Key informants were asked to discuss their thoughts about advance care planning and interventions to support advance care planning, particularly for this population. Researchers took de-identified notes that were analyzed for emerging concordant, discordant, and recurrent themes using interpretative phenomenological analysis.Key informants described the importance of initiating advance care planning preoperatively, despite potential challenges present in surgical settings. In general, decision aids were viewed as an appropriate approach to support advance care planning for this population. A recipe emerged from the data that outlines tools, ingredients, and tips for success that are needed to design an advance care planning decision aid for high-risk surgical settings.Stakeholders supported incorporating advance care planning in high-risk surgical settings and endorsed the appropriateness of using decision aids to do so. Findings will inform the next stages of developing the first advance care planning decision aid for high-risk surgery patients.
View details for DOI 10.1186/1472-684X-13-32
View details for Web of Science ID 000339683200001
View details for PubMedID 25067908
View details for PubMedCentralID PMC4110535
An Environmental Scan of Advance Care Planning Decision Aids for Patients Undergoing Major Surgery: A Study Protocol
PATIENT-PATIENT CENTERED OUTCOMES RESEARCH
2014; 7 (2): 207–17
Patients who undergo major surgery are at risk for perioperative morbidity and mortality. It would be appropriate to initiate advance care planning with patients prior to surgery, but surgeons may experience difficulty initiating such conversations. Rather than focus on changing clinician behavior, advance care planning decision aids can be an innovative vehicle to motivate advance care planning among surgical patients and their families.The purpose of this paper is to describe a study protocol for conducting an environmental scan concerning advance care planning decision aids that may be relevant to patients undergoing high-risk surgery.This study will gather information from written or verbal data sources that incorporate professional and lay perspectives: a systematic review, a grey literature review, key informant interviews, and patient and family engagement. It is envisioned that this study will generate three outcomes: a synthesis of current evidence, a summary of gaps in knowledge, and a taxonomy of existing advance care planning decision aids.This environmental scan will demonstrate principles of patient-centered outcomes research, and it will exemplify a pioneering approach for reviewing complex interventions. Anticipated limitations are that information will be gathered from a small sample of patients and families, and that potentially relevant information could also be missing from the environmental scan due to the inclusion/exclusion criteria. Outcomes from the environmental scan will inform future patient-centered research to develop and evaluate a new decision aid.
View details for DOI 10.1007/s40271-014-0046-3
View details for Web of Science ID 000344366900009
View details for PubMedID 24469597
- Anesthesiologists and the Quality of Death ANESTHESIA AND ANALGESIA 2014; 118 (4): 695–97
Methods for Improving the Quality of Palliative Care Delivery: A Systematic Review
AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE
2014; 31 (2): 202–10
The effectiveness for improving the outcomes across palliative care domains remains unclear. We conducted a systematic review of different types of quality improvement interventions relevant to palliative care.We searched PubMed, CINAHL, PsycINFO, and Cochrane for relevant articles published between 2000 and 2011.A total of 10 randomized controlled trials and 7 nonrandomized controlled trials were included. Of the 5 studies using relay of clinical information, 1 reported significant improvement in patient quality of life. Of the 5 studies targeting education and self-management, 4 found significant improvements in quality of life or patient symptoms.A minority of quality improvement interventions have succeeded in improving the quality of palliative care delivery. More studies are needed on specific quality improvement types, including organizational change and multiple types of interventions.
View details for DOI 10.1177/1049909113482039
View details for Web of Science ID 000331373200014
View details for PubMedID 23532404
View details for PubMedCentralID PMC4696032
- Challenges and Opportunities: Improving the Perioperative Experience for Patients Receiving Palliative Care ELSEVIER SCIENCE INC. 2014: 424
Evidence-Based Palliative Care in the Intensive Care Unit: A Systematic Review of Interventions
JOURNAL OF PALLIATIVE MEDICINE
2014; 17 (2): 219–35
Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes.We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms "palliative care" and "intensive care unit" were mapped to MeSH subject headings and "exploded." We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies.Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention.Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality.
View details for DOI 10.1089/jpm.2013.0409
View details for Web of Science ID 000331230400019
View details for PubMedID 24517300
View details for PubMedCentralID PMC3924791
A Systematic Review of Health Care Interventions for Pain in Patients With Advanced Cancer
AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE
2014; 31 (1): 79–86
Poorly controlled pain is common in advanced cancer. The objective of this article was to synthesize the evidence on the effectiveness of pain-focused interventions in this population.We searched MEDLINE, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through December 2011. We included prospective, controlled health care intervention studies in advanced cancer populations, focusing on pain.Nineteen studies met the inclusion criteria; most focused on nurse-led patient-centered interventions. In all, 9 (47%) of the 19 studies found a significant effect on pain. The most common intervention type was patient/caregiver education, in 17 (89%) of 19 studies, 7 of which demonstrated a significant decrease in pain.We found moderate strength of evidence that pain in advanced cancer can be improved using health care interventions, particularly nurse-led patient-centered interventions.
View details for DOI 10.1177/1049909113476129
View details for Web of Science ID 000331201100011
View details for PubMedID 23408371
View details for PubMedCentralID PMC4711357
- The Development and Use of Advance Care Planning Aids in Clinical Practice: A Systematic Review ELSEVIER SCIENCE INC. 2014: 501
Assessing the impact of palliative care in the intensive care unit through the lens of patient-centered outcomes research
CURRENT OPINION IN CRITICAL CARE
2013; 19 (5): 504–10
Professional organizations, consensus groups, and stakeholders are calling for better palliative care in acute care settings, particularly in ICUs. Our ability to deliver that care is dependent on the outcomes associated with palliative care in the ICU. This review provides a conceptual framework for these outcomes, discusses current and future challenges for work in this field, and advocates for better use of patient-centered outcomes in future studies.Previous studies of palliative care interventions in the ICU have used heterogeneous outcomes, conceptualized as: systems-related, content-related, clinician-related, or patient/family-related. Few outcomes were used in multiple studies and many studies had insufficient power and questionable generalizability and impact. Although nearly all previous studies incorporated family-related outcomes, not one incorporated patient-centered outcomes, such as health-related quality of life, patient symptom score, or consensus between patient goals and care provided.Delivery of palliative care in the ICU will be hampered until studies incorporate outcomes that are: responsive to and reflective of variations in care, and multi-faceted (with patient-centered components) to reflect the multi-dimensional nature of palliative care and the varied needs of different stakeholders.
View details for DOI 10.1097/MCC.0b013e328364d50f
View details for Web of Science ID 000326575200019
View details for PubMedID 23995120
SPIRITUALITY AND RELIGIOSITY DURING THE PERIOPERATIVE PERIOD FOR CANCER PATIENTS AND THEIR FAMILY: A SYSTEMATIC REVIEW
LIPPINCOTT WILLIAMS & WILKINS. 2013: 203
View details for Web of Science ID 000330441700175
"[H] E'S GOING TO HAVE TO MAKE A LOT OF ADJUSTMENTS": INTENSIVIST AND SURGEON-IDENTIFIED THEMES CONCERNING LONG-STAY SURGICAL ICU PATIENTS
LIPPINCOTT WILLIAMS & WILKINS. 2013: 98
View details for Web of Science ID 000330441700088
Continuity, Coordination, and Transitions of Care for Patients with Serious and Advanced Illness: A Systematic Review of Interventions
JOURNAL OF PALLIATIVE MEDICINE
2013; 16 (4): 436–45
Continuity, coordination, and transitions of care are key to high-quality medical care for patients with serious and advanced illness. We conducted a systematic review to evaluate the impact of interventions targeting these areas in this population.We searched PubMed, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through 2011. We included prospective controlled studies targeting continuity, coordination, and transitions for patients with advanced illness that reported patient centered outcomes. Of 13,014 citations, 23 studies met inclusion criteria. Two investigators extracted and checked data on population, interventions, methods, outcomes, and methodological quality.Four of the six studies evaluating patient satisfaction (67%) and four of the six studies evaluating caregiver satisfaction (67%) showed statistically significant improvements in these outcomes in the intervention compared to the control group. Only three of the nine studies (33%) measuring quality of life and five of the 16 (31%) measuring health care utilization showed improvement. Results were similar across different types of interventions.Many studies were limited by methodologic issues such as use of measurement tools not developed for patients with advanced disease and small sample size. Interventions and outcomes were too heterogeneous for meta-analysis. We found moderate evidence that interventions targeting continuity, coordination, and transitions in patients with advanced and serious illness improve patient and caregiver satisfaction, but low evidence for other outcomes. Further research is needed on how to target these domains for outcomes such as health care utilization.
View details for DOI 10.1089/jpm.2012.0317
View details for Web of Science ID 000316857000021
View details for PubMedID 23488450
A Systematic Review of Communication Quality Improvement Interventions for Patients with Advanced and Serious Illness
JOURNAL OF GENERAL INTERNAL MEDICINE
2013; 28 (4): 570–77
Effective communication is an interaction between two or more people that produces a desired effect and is a key element of quality of care for patients with advanced and serious illness and their family members. Suboptimal provider-patient/family communication is common, with negative effects on patient/family-centered outcomes.To systematically review the evidence for effectiveness of communication-related quality improvement interventions for patients with advanced and serious illness and to explore the effectiveness of consultative and integrative interventions.MEDLINE, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through December 2011 and reference list of eligible articles and reviews.Prospective, controlled quality improvement studies in populations with life-limiting or severe life-threatening illness with a primary intervention focus of improving communication with patients and/or families.Two investigators independently screened and abstracted data on patient/family-centered outcomes.We included 20 studies; 13 (65 %) were in intensive care. We found four intervention types: (1) family meetings with the usual team (11 studies, 77 % found improvement in healthcare utilization), (2) palliative care teams (5 studies, 50 % found improvement in healthcare utilization), (3) ethics consultation (2 studies, 100 % found improvement in healthcare utilization), and (4) physician-patient communication (2 studies, no significant improvement in healthcare utilization). Among studies addressing the outcomes of patient/family satisfaction, 22 % found improvement; among studies addressing healthcare utilization (e.g., length of stay), 73 % found improvement. Results suggest that consultative interventions, as opposed to integrative ones, may be more effective, but more research is needed.Study heterogeneity did not allow quantitative synthesis.Communication in the care of patients with advanced and serious illness can be improved using quality improvement interventions, particularly for healthcare utilization as an outcome. Interventions may be more effective using a consultative approach.
View details for DOI 10.1007/s11606-012-2204-4
View details for Web of Science ID 000316398400017
View details for PubMedID 23099799
View details for PubMedCentralID PMC3599019
- Intensive Care Unit Nurses and Palliative Care: Perceptions and Recommendations ELSEVIER SCIENCE INC. 2013: 419–20
PERCEPTIONS OF HIGH AND LOW QUALITY CARE IN SURGICAL INTENSIVE CARE UNITS AMONG PATIENTS AND THEIR FAMILIES
LIPPINCOTT WILLIAMS & WILKINS. 2012: U246
View details for Web of Science ID 000312045701170
Nurse-Perceived Barriers to Effective Communication Regarding Prognosis and Optimal End-of-Life Care for Surgical ICU Patients: A Qualitative Exploration
JOURNAL OF PALLIATIVE MEDICINE
2012; 15 (8): 910–15
Integration of palliative care for intensive care unit (ICU) patients is important but often challenging, especially in surgical ICUs (SICUs), in part because many surgeons equate palliative care with terminal care and failure of restorative care. SICU nurses, who are key front-line clinicians, can provide insights into barriers for delivery of optimal palliative care in their setting.We developed a focus group guide to identify barriers to two key components of palliative care-optimal communication regarding prognosis and optimal end-of-life care-and used the tool to conduct focus groups of nurses providing bedside care in three SICUs at a tertiary care, academic, inner city hospital. Using content analysis technique, responses were organized into thematic domains that were validated by independent observers and a subset of participating nurses.Four focus groups included a total of 32 SICU nurses. They identified 34 barriers to optimal communication regarding prognosis, which were summarized into four domains: logistics, clinician discomfort with discussing prognosis, inadequate skill and training, and fear of conflict. For optimal end-of-life care, the groups identified 24 barriers in four domains: logistics, inability to acknowledge an end-of-life situation, inadequate skill and training, and cultural differences relating to end-of-life care.Nurses providing bedside care in SICUs identify barriers in several domains that may impede optimal discussions of prognoses and end-of-life care for patients with surgical critical illness. Consideration of these perceived barriers and the underlying SICU culture is relevant for designing interventions to improve palliative care in this setting.
View details for DOI 10.1089/jpm.2011.0481
View details for Web of Science ID 000307095200013
View details for PubMedID 22676315
View details for PubMedCentralID PMC3396137
Health care quality in end-of-life care: promoting palliative care in the intensive care unit.
2011; 29 (1): 111–22
Seminal articles published in the late 1990s instigated not only an intense interest in health care quality but also a new era of research into quality end-of-life care, particularly in intensive care units (ICUs). ICUs can improve health care quality at the end of life by better using palliative care services and palliative care-related principles. This article details how the interest in health care quality has spurred a similar interest in end-of-life and palliative care in ICUs, defines palliative care and describes how it improves health care quality, and highlights barriers to the incorporation of palliative care in ICUs.
View details for DOI 10.1016/j.anclin.2010.11.001
View details for PubMedID 21295756
Effect of Accounting for Multiple Concurrent Catheters on Central Line-Associated Bloodstream Infection Rates: Practical Data Supporting a Theoretical Concern
INFECTION CONTROL AND HOSPITAL EPIDEMIOLOGY
2011; 32 (2): 121–24
Central line-associated bloodstream infection (CLABSI) rates are gaining importance as they become publicly reported metrics and potential pay-for-performance indicators. However, the current conventional method by which they are calculated may be misleading and unfairly penalize high-acuity care settings, where patients often have multiple concurrent central venous catheters (CVCs).We compared the conventional method of calculating CLABSI rates, in which the number of catheter-days is used (1 patient with n catheters for 1 day has 1 catheter-day), with a new method that accounts for multiple concurrent catheters (1 patient with n catheters for 1 day has n catheter-days), to determine whether the difference appreciably changes the estimated CLABSI rate.Cross-sectional survey.Academic, tertiary care hospital.Adult patients who were consecutively admitted from June 10 through July 9, 2009, to a cardiac-surgical intensive care unit and a surgical intensive and surgical intermediate care unit.Using the conventional method, we counted 485 catheter-days throughout the study period, with a daily mean of 18.6 catheter-days (95% confidence interval, 17.2-20.0 catheter-days) in the 2 intensive care units. In contrast, the new method identified 745 catheter-days, with a daily mean of 27.5 catheter-days (95% confidence interval, 25.6-30.3) in the 2 intensive care units. The difference was statistically significant (P < .001). The new method that accounted for multiple concurrent CVCs resulted in a 53.6% increase in the number of catheter-days; this increased denominator decreases the calculated CLABSI rate by 36%.The undercounting of catheter-days for patients with multiple concurrent CVCs that occurs when the conventional method of calculating CLABSI rates is used inflates the CLABSI rate for care settings that have a high CVC burden and may not adjust for underlying medical illness. Additional research is needed to validate and generalize our findings.
View details for DOI 10.1086/657941
View details for Web of Science ID 000286457200003
View details for PubMedID 21460465
- Nurse-Perceived Barriers to Effective Communication Regarding Prognosis and Optimal End-of-Life Care for Surgical ICU Patients: A Qualitative Exploration ELSEVIER SCIENCE INC. 2011: 193
Surgical intensive care unit clinician estimates of the adequacy of communication regarding patient prognosis
2010; 14 (6): R218
Intensive care unit (ICU) patients and family members repeatedly note accurate and timely communication from health care providers to be crucial to high-quality ICU care. Practice guidelines recommend improving communication. However, few data, particularly in surgical ICUs, exist on health care provider opinions regarding whether communication is effective.To evaluate ICU clinician perceptions regarding adequacy of communication regarding prognosis, we developed a survey and administered it to a cross section of surgical ICU nurses, surgical ICU physicians, nurse practitioners (NPs), and surgeons.Surgeons had a high satisfaction with communication regarding prognosis for themselves (90%), ICU nurses (85%), and ICU physicians and NPs (85%). ICU nurses noted high satisfaction with personal (82%) and ICU physician and NP (71%) communication, but low (2%) satisfaction with that provided by surgeons. ICU physicians and NPs noted high satisfaction with personal (74%) and ICU nurse (88%) communication, but lower (23%) satisfaction with that provided by surgeons. ICU nurses were the most likely (75%) to report speaking to patients and patient families regarding prognosis, followed by surgeons (40%), and then ICU physicians and NPs (33%). Surgeons noted many opportunities to speak to ICU nurses and ICU physicians and NPs about patient prognosis and noted that comments were often valued. ICU physicians and NPs and ICU nurses noted many opportunities to speak to each other but fewer opportunities to communicate with surgeons. ICU physicians and NPs thought that their comments were valued by ICU nurses but less valued by surgeons. ICU nurses thought that their comments were less valued by ICU physicians and NPs and surgeons.ICU nurses, surgeons, and ICU intensivists and NPs varied widely in their satisfaction with communication relating to prognosis. Clinician groups also varied in whether they thought that they had opportunities to communicate prognosis and whether their concerns were valued by other provider groups. These results hint at the nuanced and complicated relationships present in surgical ICUs. Further validation studies and further evaluations of patient and family member perspectives are needed.
View details for DOI 10.1186/cc9346
View details for Web of Science ID 000287516100024
View details for PubMedID 21114837
View details for PubMedCentralID PMC3220002