Scholars@Duke
Karen E. Steinhauser

Karen E. Steinhauser

Professor in Population Health Sciences
Population Health Sciences
karen.steinhauser@duke.edu
200 Morris Street, Durham, NC 27705
200 Morris Street, Durham, NC 27705

Selected Publications

How Does Spiritual Well-Being Change Over Time Among US Patients with Heart Failure and What Predicts Change?

Journal Article J Relig Health · August 2024 Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-be ... Full text Link to item Cite

Validating a tool to measure spiritual beliefs, needs and resources in serious illness: The I-SPIRIT.

Journal Article J Am Geriatr Soc · July 2024 BACKGROUND: Seriously ill patients rely on spiritual and existential beliefs to support coping and approach crucial treatment and healthcare decisions. Yet, we lack gold standard, validated approaches to gathering information on those spiritual beliefs. Th ... Full text Link to item Cite

Using Multiphase Optimization Strategy and Human-Centered Design to Create an Integrated Model of Palliative Care Skills in Home-Based Physical Therapy for Advanced Heart Failure.

Journal Article J Palliat Med · April 2024 Background: Many older adults with advanced heart failure receive home health rehabilitation after hospitalization. Yet, integration of palliative care skills into rehabilitation is limited. Objective: Describe using the Multiphase Optimization Strategy (M ... Full text Link to item Cite

Design and pilot test of an implicit bias mitigation curriculum for clinicians.

Journal Article Front Med (Lausanne) · 2024 INTRODUCTION: Clinician implicit racial bias (IB) may lead to lower quality care and adverse health outcomes for Black patients. Educational efforts to train clinicians to mitigate IB vary widely and have insufficient evidence of impact. We developed and p ... Full text Link to item Cite

Meaning-centered pain coping skills training for patients with metastatic cancer: Protocol for a randomized controlled efficacy trial.

Journal Article Contemp Clin Trials · December 2023 BACKGROUND: Many patients with advanced cancer describe pain as a debilitating symptom that greatly interferes with daily activities and enjoyment of life. Psychosocial interventions can improve cancer-related pain but rarely address spiritual concerns (e. ... Full text Link to item Cite

The Use of Templates for Documenting Advance Care Planning Conversations: A Descriptive Analysis.

Journal Article J Pain Symptom Manage · August 2023 CONTEXT: While professional societies and expert panels have recommended quality indicators related to advance care planning (ACP) documentation, including using structured documentation templates, it is unclear how clinicians document these conversations. ... Full text Link to item Cite

Meaning-centered pain coping skills training for patients with metastatic cancer: Results of a randomized controlled pilot trial.

Journal Article Psychooncology · July 2023 OBJECTIVE: For patients with advanced cancer, pain is a common and debilitating symptom that can negatively impact physical, emotional, and spiritual well-being. This trial examined the feasibility and initial effects of Meaning-Centered Pain Coping Skills ... Full text Link to item Cite

"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System.

Journal Article J Palliat Med · January 2023 Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performe ... Full text Link to item Cite

Simplifying therapy to assure glycemic control and engagement (STAGE) in poorly-controlled diabetes: A pilot study.

Journal Article J Diabetes Complications · January 2023 In this single-arm pilot study, we demonstrated feasibility and acceptability of an insulin simplification intervention in patients with persistent, poorly-controlled type 2 diabetes on complex insulin regimens. While not powered to assess clinical outcome ... Full text Link to item Cite

Implementation of an Intensive Telehealth Intervention for Rural Patients with Clinic-Refractory Diabetes.

Journal Article J Gen Intern Med · September 2022 BACKGROUND: Rural patients with type 2 diabetes (T2D) may experience poor glycemic control due to limited access to T2D specialty care and self-management support. Telehealth can facilitate delivery of comprehensive T2D care to rural patients, but implemen ... Full text Open Access Link to item Cite

Effect of a Comprehensive Telehealth Intervention vs Telemonitoring and Care Coordination in Patients With Persistently Poor Type 2 Diabetes Control: A Randomized Clinical Trial.

Journal Article JAMA Intern Med · September 1, 2022 IMPORTANCE: Persistently poorly controlled type 2 diabetes (PPDM) is common and causes poor outcomes. Comprehensive telehealth interventions could help address PPDM, but effectiveness is uncertain, and barriers impede use in clinical practice. OBJECTIVE: T ... Full text Open Access Link to item Cite

Evaluating a couple communication skills training (CCST) intervention for advanced cancer: study protocol for a randomized controlled trial.

Journal Article Trials · August 26, 2022 BACKGROUND: For patients and their intimate partners, advanced cancer poses significant challenges that can negatively impact both individuals and their relationship. Prior studies have found evidence that couple-based communication skills interventions ca ... Full text Link to item Cite

Spirituality in Serious Illness and Health.

Journal Article JAMA · July 12, 2022 IMPORTANCE: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. OBJECTIVE: To review evidence concerning spirituality in serious illness and health and to identify implications for patient ... Full text Link to item Cite

Needs of care partners of older Veterans with serious illness.

Journal Article J Am Geriatr Soc · June 2022 BACKGROUND: The quality of life of care partners and care recipients may be improved by programs that address unmet needs. The aim of this qualitative study was to identify care partners' social and practical needs as they care for Veterans (65 yo+) with s ... Full text Link to item Cite

Clinician End-of-Life Experiences With Pediatric Muslim Patients at a US Quaternary Care Center.

Journal Article J Pain Symptom Manage · May 2022 CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate clinician ... Full text Link to item Cite

Triadic agreement about advanced cancer treatment decisions: Perceptions among patients, families, and oncologists.

Journal Article Patient Educ Couns · April 2022 OBJECTIVES: When patients make cancer treatment decisions, they consider the needs and preferences of family caregivers and clinicians. We examined how much all three triad members agreed about goals of treatment and caregivers' influence on decision-makin ... Full text Link to item Cite

Spirituality in Patients With Heart Failure.

Journal Article JACC Heart Fail · April 2022 With advances in heart failure (HF) treatment, patients are living longer, putting further emphasis on quality of life (QOL) and the role of palliative care principles in their care. Spirituality is a core domain of palliative care, best defined as a dynam ... Full text Link to item Cite

Who Benefits Most? A Multisite Study of Coaching and Resident Well-being.

Journal Article J Gen Intern Med · February 2022 BACKGROUND: Coaching has been shown to improve resident well-being; however, not all benefit equally. OBJECTIVE: Assess predictors of changes in resident physician well-being and burnout in a multisite implementation of a Professional Development Coaching ... Full text Link to item Cite

Polypharmacy in Palliative Care for Advanced Heart Failure: The PAL-HF Experience.

Journal Article J Card Fail · February 2022 BACKGROUND: Palliative care (PC) in advanced heart failure (HF) aims to improve symptoms and quality of life (QOL), in part through medication management. The impact of PC on polypharmacy (>5 medications) remains unknown. METHODS AND RESULTS: We explored p ... Full text Link to item Cite

Coordinating assessment of spiritual needs: a cross-walk of narrative and psychometric assessment tools used in palliative care.

Journal Article J Health Care Chaplain · 2022 Addressing spiritual needs of patients in healthcare settings improves patient experiences and clinical outcomes; however, non-chaplain providers typically assess spiritual needs differently (quantitative psychometric) than healthcare chaplains (long form ... Full text Link to item Cite

Meaning-Centered Pain Coping Skills Training: A Pilot Feasibility Trial of a Psychosocial Pain Management Intervention for Patients with Advanced Cancer.

Journal Article J Palliat Med · January 2022 Background: Pain from advanced cancer can greatly reduce patients' physical, emotional, and spiritual well-being. Objective: To examine the feasibility and acceptability of a behavioral pain management intervention, Meaning-Centered Pain Coping Skills Trai ... Full text Link to item Cite

Exploring Culturally Responsive Religious and Spirituality Health Care Communications among African Americans with Advanced Heart Failure, Their Family Caregivers, and Clinicians.

Journal Article J Palliat Med · December 2021 Background: Religion and spirituality (R/S) impact how African Americans (AAs) cope with serious illness, yet are infrequently addressed in patient-clinician communication. Objectives: To explore AAs with advanced heart failure and their family caregivers' ... Full text Link to item Cite

A novel decision aid for acute myeloid leukemia: a feasibility and preliminary efficacy trial.

Journal Article Support Care Cancer · July 2021 PURPOSE: Acute myeloid leukemia (AML) is a hematologic malignancy characterized by a poor prognosis but also a paradoxical possibility of cure. This renders decision-making complex and imminent. Unfortunately, many patients with AML misestimate their progn ... Full text Link to item Cite

The Cost-Effectiveness of Palliative Care: Insights from the PAL-HF Trial.

Journal Article J Card Fail · June 2021 BACKGROUND: In a randomized control trial, Palliative Care in Heart Failure (PAL-HF) improved heart failure-related quality of life, though cost-effectiveness remains unknown. The aim of this study was to evaluate the cost-effectiveness of the PAL-HF trial ... Full text Link to item Cite

Applied Rapid Qualitative Analysis to Develop a Contextually Appropriate Intervention and Increase the Likelihood of Uptake.

Journal Article Med Care · June 1, 2021 BACKGROUND: Rapid approaches to collecting and analyzing qualitative interview data can accelerate discovery timelines and intervention development while maintaining scientific rigor. We describe the application of these methods to a program designed to im ... Full text Open Access Link to item Cite

Current measures of distress may not account for what's most important in existential care interventions: Results of the outlook trial.

Journal Article Palliat Support Care · December 2020 OBJECTIVE: Compare the efficacy of two interventions addressing emotional and existential well-being in early life-limiting illness. METHOD: Primary trial analysis (n = 135) included patients with advanced cancer, congestive heart failure, or end-stage ren ... Full text Link to item Cite

Practical telehealth to improve control and engagement for patients with clinic-refractory diabetes mellitus (PRACTICE-DM): Protocol and baseline data for a randomized trial.

Journal Article Contemp Clin Trials · November 2020 BACKGROUND: Persistent poorly-controlled type 2 diabetes mellitus (PPDM), or maintenance of a hemoglobin A1c (HbA1c) ≥8.5% despite receiving clinic-based diabetes care, contributes disproportionately to the national diabetes burden. Comprehensive telehealt ... Full text Open Access Link to item Cite

Effect of an Early Palliative Care Telehealth Intervention vs Usual Care on Patients With Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial.

Journal Article JAMA Intern Med · September 1, 2020 IMPORTANCE: National guidelines recommend early palliative care for patients with advanced heart failure, which disproportionately affects rural and minority populations. OBJECTIVE: To determine the effect of an early palliative care telehealth interventio ... Full text Link to item Cite

Enhancing meaning in the face of advanced cancer and pain: Qualitative evaluation of a meaning-centered psychosocial pain management intervention.

Journal Article Palliat Support Care · June 2020 OBJECTIVES: The objectives of this study were to obtain patient evaluations of the content, structure, and delivery modality of Meaning-Centered Pain Coping Skills Training (MCPC), a novel psychosocial intervention for patients with advanced cancer and pai ... Full text Link to item Cite

Connecting Caregivers to Support: Lessons Learned From the VA Caregiver Support Program.

Journal Article J Appl Gerontol · April 2020 Development and evaluation of supportive caregiver interventions has become a national priority. This study's aim was to evaluate how caregivers participating in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP) use and value supporti ... Full text Link to item Cite

Comparing internal and external validation in the discovery of qualitative treatment-subgroup effects using two small clinical trials.

Journal Article Contemp Clin Trials Commun · September 2019 In a two-arm randomized trial where both arms receive active treatment (i.e., treatments A and B), often the primary goal is to determine which of the treatments, on average, is more effective. A supplementary objective is to understand possible heterogene ... Full text Link to item Cite

Reducing Disparities in the Quality of Palliative Care for Older African Americans through Improved Advance Care Planning: Study Design and Protocol.

Journal Article J Palliat Med · September 2019 Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many ... Full text Link to item Cite

Identifying core curricular components for behavioral health training in internal medicine residency: Qualitative interviews with residents, faculty, and behavioral health clinicians.

Journal Article Int J Psychiatry Med · May 2019 OBJECTIVE: Behavioral health services frequently delivered by primary care providers include care for mental health and substance abuse disorders and assistance with behavioral risk factor reduction. Internal medicine residencies in the United States lack ... Full text Open Access Link to item Cite

Themes Addressed by Couples With Advanced Cancer During a Communication Skills Training Intervention.

Journal Article J Pain Symptom Manage · August 2018 CONTEXT: Couple-based communication interventions have beneficial effects for patients with cancer and their partners. However, few studies have targeted patients with advanced stages of disease, and little is known about how best to assist couples in disc ... Full text Link to item Cite

Older, Seriously Ill Veterans' Views on the Role of Religion and Spirituality in Health-Care Delivery.

Journal Article Am J Hosp Palliat Care · July 2018 OBJECTIVES: To describe older Veteran's perspectives on the current delivery of religious or spiritual (R/S) care. METHODS: Semi-structured interviews with older veterans with advanced stage cancer, heart failure, or pulmonary disease to elicit views on wh ... Full text Link to item Cite

Evaluating the Feasibility and Acceptability of a Telehealth Program in a Rural Palliative Care Population: TapCloud for Palliative Care.

Journal Article J Pain Symptom Manage · July 2018 CONTEXT: The impact of telehealth and remote patient monitoring has not been well established in palliative care populations in rural communities. OBJECTIVES: The objectives of this study were to 1) describe a telehealth palliative care program using the T ... Full text Link to item Cite

Triadic treatment decision-making in advanced cancer: a pilot study of the roles and perceptions of patients, caregivers, and oncologists.

Journal Article Support Care Cancer · April 2018 PURPOSE: The research on cancer treatment decision-making focuses on dyads; the full "triad" of patients, oncologists, and caregivers remains largely unstudied. We investigated how all members of this triad perceive and experience decisions related to trea ... Full text Link to item Cite

Family caregiver use and value of support services in the VA Program of Comprehensive Assistance for Family Caregivers

Journal Article Journal of Long-Term Care · January 1, 2018 Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs’ (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries su ... Full text Cite

Patient experiences of acute myeloid leukemia: A qualitative study about diagnosis, illness understanding, and treatment decision-making.

Conference Psychooncology · December 2017 BACKGROUND: Patients with acute myeloid leukemia (AML) face a unique, difficult situation characterized by sudden changes in health, complex information, and pressure to make quick treatment decisions amid sizeable tradeoffs. Yet, little is known about pat ... Full text Link to item Cite

Addressing Patient Emotional and Existential Needs During Serious Illness: Results of the Outlook Randomized Controlled Trial.

Journal Article J Pain Symptom Manage · December 2017 CONTEXT: Few interventions exist to address patients' existential needs. OBJECTIVES: Determine whether an intervention to address seriously ill patients' existential concerns improves preparation, completion (elements of quality of life [QOL] at end of lif ... Full text Link to item Cite

The role of a palliative care intervention in moderating the relationship between depression and survival among individuals with advanced cancer.

Journal Article Health Psychol · December 2017 OBJECTIVE: Randomized controlled trials (RCTs) of early palliative care interventions in advanced cancer have positively impacted patient survival, yet the mechanisms remain unknown. This secondary analysis of 2 RCTs assessed whether an early palliative ca ... Full text Link to item Cite

State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions.

Journal Article J Pain Symptom Manage · September 2017 The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part II of ... Full text Link to item Cite

State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes.

Journal Article J Pain Symptom Manage · September 2017 The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part I of t ... Full text Link to item Cite

Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial.

Journal Article BMC palliative care · August 2017 BackgroundEarly palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educa ... Full text Cite

Palliative Care in Heart Failure: The PAL-HF Randomized, Controlled Clinical Trial.

Journal Article J Am Coll Cardiol · July 18, 2017 BACKGROUND: Advanced heart failure (HF) is characterized by high morbidity and mortality. Conventional therapy may not sufficiently reduce patient suffering and maximize quality of life. OBJECTIVES: The authors investigated whether an interdisciplinary pal ... Full text Link to item Cite

Palliative Care in Heart Failure The PAL-HF Randomized, Controlled Clinical Trial

Journal Article JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY · July 18, 2017 Link to item Cite

Why Burnout Is So Hard to Fix.

Journal Article J Oncol Pract · June 2017 Full text Link to item Cite

"It Is Like Heart Failure. It Is Chronic … and It Will Kill You": A Qualitative Analysis of Burnout Among Hospice and Palliative Care Clinicians.

Journal Article J Pain Symptom Manage · May 2017 CONTEXT: Although prior surveys have identified rates of self-reported burnout among palliative care clinicians as high as 62%, limited data exist to elucidate the causes, ameliorators, and effects of this phenomenon. OBJECTIVES: We explored burnout among ... Full text Link to item Cite

Randomized trial of an uncertainty self-management telephone intervention for patients awaiting liver transplant.

Journal Article Patient Educ Couns · March 2017 OBJECTIVE: We tested an uncertainty self-management telephone intervention (SMI) with patients awaiting liver transplant and their caregivers. METHODS: Participants were recruited from four transplant centers and completed questionnaires at baseline, 10, a ... Full text Link to item Cite

The elephant in the room: Facilitating conversations about advanced cancer between patients and their spouses.

Conference Journal of Clinical Oncology · October 9, 2016 233 Background: Interventions to enhance couples’ communication about cancer-related issues can lead to benefits for patients, spouses, and their relationships. We recently conducted a pilot study testing a couples communication ... Full text Cite

The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study.

Journal Article Palliat Support Care · October 2016 OBJECTIVE: When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address ex ... Full text Link to item Cite

Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors.

Journal Article J Pain Symptom Manage · August 2016 For palliative care (PC) clinicians, the work of caring for patients with serious illness can put their own well-being at risk. What they often do not learn in training, because of the relative paucity of evidence-based programs, are practical ways to miti ... Full text Link to item Cite

Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being.

Journal Article Support Care Cancer · January 2016 PURPOSE: We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized cancer patients. METHODS: We recruited adult patients in oncology units and t ... Full text Link to item Cite

What constitutes quality of family experience at the end of life? Perspectives from family members of patients who died in the hospital.

Journal Article Palliat Support Care · August 2015 OBJECTIVE: Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the ... Full text Open Access Link to item Cite

Transcending differences to study the transcendent: an exploratory study of researchers' and chaplains' reflections on interdisciplinary spiritual care research collaboration.

Journal Article BMC Palliat Care · April 18, 2015 BACKGROUND: Despite recognition of the centrality of professional board-certified chaplains (BCC) in palliative care, the discipline has little research to guide its practices. To help address this limitation, HealthCare Chaplaincy Network funded six propo ... Full text Link to item Cite

Validation of a measure of family experience of patients with serious illness: the QUAL-E (Fam).

Journal Article J Pain Symptom Manage · December 2014 CONTEXT: Family members of seriously ill patients experience significant burden as they advocate with providers and participate in key decisions for loved ones. Most assessments focus on patient experience, yet family members' own quality of experience is ... Full text Open Access Link to item Cite

The palliative care in heart failure trial: rationale and design.

Journal Article Am Heart J · November 2014 BACKGROUND: The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlle ... Full text Link to item Cite

Caregiver experience during advanced chronic illness and last year of life.

Journal Article J Am Geriatr Soc · June 2014 OBJECTIVES: To compare the prevalence and predictors of caregiver esteem and burden during two different stages of care recipients' illnesses-advanced chronic illness and the last year of life. DESIGN: Longitudinal, observational cohort study. SETTING: Com ... Full text Link to item Cite

Scheduled telephone visits in the veterans health administration patient-centered medical home.

Journal Article BMC Health Serv Res · April 1, 2014 BACKGROUND: The Veterans Health Administration (VHA) patient-centered medical home model, Patient Aligned Care Teams (PACT), includes telephone visits to improve care access and efficiency. Scheduled telephone visits can replace in-person care for some foc ... Full text Link to item Cite

Nursing strategies to support family members of ICU patients at high risk of dying.

Journal Article Heart Lung · 2014 OBJECTIVES: To explore how family members of ICU patients at high risk of dying respond to nursing communication strategies. BACKGROUND: Family members of ICU patients may face difficult decisions. Nurses are in a position to provide support. Evidence of s ... Full text Link to item Cite

Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life.

Journal Article JAMA Intern Med · June 24, 2013 IMPORTANCE: Previous studies report associations between medical utilization at the end-of-life (EoL) and religious coping and spiritual support from the medical team. However, the influence of clergy and religious communities on EoL outcomes is unclear. O ... Full text Link to item Cite

Admission to the intensive care unit and well-being in patients with advanced chronic illness.

Journal Article Am J Crit Care · May 2013 PURPOSE: To describe the association of intensive care with trajectories of functional, emotional, social, and physical well-being in patients with 3 common advanced illnesses. METHODS: Cross-sectional cohort study of 42 patients admitted to the intensive ... Full text Link to item Cite

Nurse-facilitated preparation and life completion interventions are acceptable and feasible in the Australian palliative care setting: results from a phase 2 trial.

Journal Article Cancer Nurs · 2013 BACKGROUND: Existential/spiritual needs of advanced cancer patients are not always met in healthcare. Potential barriers for health professionals exploring existential concerns include lack of time, training, tools, and confidence. Yet patients with life-t ... Full text Link to item Cite

What is your understanding of your illness? A communication tool to explore patients' perspectives of living with advanced illness.

Journal Article J Gen Intern Med · November 2012 BACKGROUND: Provider communication courses and guidelines stress the use of open-ended questions, such as "what is your understanding of your illness?," to explore patients' perceptions of their illness severity, yet descriptions of patients' responses are ... Full text Link to item Cite

Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers.

Journal Article J Pain Symptom Manage · September 2012 CONTEXT: Three important causes of death in the U.S. (cancer, congestive heart failure, and chronic obstructive pulmonary disease) are preceded by long periods of declining health; often, family members provide most care for individuals who are living with ... Full text Link to item Cite

Discussions of the kidney disease trajectory by elderly patients and nephrologists: a qualitative study.

Journal Article Am J Kidney Dis · April 2012 BACKGROUND: Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to descr ... Full text Link to item Cite

End-of-life care at an academic medical center: are attending physicians, house staff, nurses, and bereaved family members equally satisfied? Implications for palliative care.

Journal Article Am J Hosp Palliat Care · February 2012 BACKGROUND: End-of-life care is deemed to be poor in the United States - particularly in large teaching hospitals. Via a brief survey, we examined satisfaction with end-of-life care for those patients who died in our academic medical center from provider a ... Full text Link to item Cite

Categorizing the effect of comorbidity: a qualitative study of individuals' experiences in a low-vision rehabilitation program.

Journal Article J Am Geriatr Soc · October 2011 OBJECTIVES: To identify generalizable ways that comorbidity affects older adults' experiences in a health service program directed toward an index condition and to develop a framework to assist clinicians in approaching comorbidity in the design, delivery, ... Full text Link to item Cite

Comparing three life-limiting diseases: does diagnosis matter or is sick, sick?

Journal Article J Pain Symptom Manage · September 2011 CONTEXT: At advanced stages, cancer, congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) produce high rates of hospitalization, disability, and annual mortality. Despite similar prognoses, patients with cancer often are treated ... Full text Link to item Cite

Clergy-laity support and patients' mood during serious illness: a cross-sectional epidemiologic study.

Journal Article Palliat Support Care · September 2011 OBJECTIVES: Religious participation is positively associated with mental health, but attendance at worship services declines during serious illness. This study assessed whether home visits by clergy or laity provide benefits to seriously ill patients who m ... Full text Link to item Cite

Discussing life story, forgiveness, heritage, and legacy with patients with life-limiting illnesses.

Journal Article Int J Palliat Nurs · September 2011 AIM: To explore the perceptions that individuals with life-limiting illnesses have about their lives, both positive and negative, and their messages to future generations. METHODS: A preparation and life completion intervention (Outlook) was assessed for a ... Full text Link to item Cite

Which domains of spirituality are associated with anxiety and depression in patients with advanced illness?

Journal Article J Gen Intern Med · July 2011 BACKGROUND: Anxiety and depression are common in seriously ill patients and may be associated with spiritual concerns. Little research has examined how concerns in different domains of spirituality are related to anxiety and depression. OBJECTIVE: To exami ... Full text Link to item Cite

Pilot study: individualized training for caregivers of hospitalized older veterans.

Journal Article Nurs Res · 2011 BACKGROUND: : The hospital-to-home transition represents a vulnerable time for older veterans who are more medically and socioeconomically challenged than the general population of older adults. OBJECTIVES: : The aim of this study was examine the feasibili ... Full text Link to item Cite

Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey.

Journal Article Fertil Steril · February 2010 OBJECTIVE: To describe fertility patients' preferences for disposition of cryopreserved embryos and determine factors important to these preferences. DESIGN: Cross-sectional survey conducted between June 2006 and July 2007. SETTING: Nine geographically div ... Full text Link to item Cite

Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life.

Journal Article Palliat Support Care · December 2009 OBJECTIVE: Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elu ... Full text Link to item Cite

Is a home-care network necessary to access the Medicare hospice benefit?

Journal Article J Palliat Med · August 2009 OBJECTIVE: To test whether the presence of an informal or formal care network in the home leads to different hospice utilization patterns near death. To examine how the informal care relationship affects hospice use patterns. DATA SOURCES: Medicare Current ... Full text Link to item Cite

Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial.

Journal Article J Palliat Med · November 2008 BACKGROUND: Significant palliative care intervention has focused on physical pain and symptom control; yet less empirical evidence supports efforts to address the psychosocial and spiritual dimensions of experience. OBJECTIVE: To evaluate the impact of an ... Full text Link to item Cite

Disparities in pain management between cognitively intact and cognitively impaired nursing home residents.

Journal Article J Pain Symptom Manage · April 2008 This study tests the association between residents' cognitive impairment and nursing homes' pain management practices. We used chart abstraction to collect data on 551 adults in six North Carolina nursing homes. From the standard data collected in the Mini ... Full text Link to item Cite

End-of-life care in nursing home settings: do race or age matter?

Journal Article Palliat Support Care · March 2008 OBJECTIVE: One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institution ... Full text Link to item Cite

Selective adherence to antihypertensive medications as a patient-driven means to preserving sexual potency.

Journal Article Patient Prefer Adherence · February 2, 2008 OBJECTIVE: To describe hypertensive patients' experiences with sexual side effects and their consequences for antihypertensive medication adherence. METHODS: Data were from a study conducted to identify facilitators of and barriers to adherence to blood pr ... Full text Link to item Cite

Characterizing hospice discharge patterns in a nationally representative sample of the elderly, 1993-2000.

Journal Article Am J Hosp Palliat Care · 2008 The aim of this study is to identify the prevalence and correlates of individuals discharged alive from hospice in the Medicare program to determine whether the current hospice benefit matches the needs of dying patients. Using a nationally representative ... Full text Link to item Cite

What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program?

Journal Article Soc Sci Med · October 2007 Hospices have been expected to reduce health expenditures since their addition to the US Medicare benefit package in the early-1980s, but the literature on their ability to do so is mixed. The contradictory findings noted in previous studies may be due to ... Full text Link to item Cite

Measuring the quality of dying in long-term care.

Journal Article J Am Geriatr Soc · September 2007 OBJECTIVES: To describe two versions of a new measure, The Quality of Dying in Long-Term Care, for postdeath administration to surrogate respondents (staff and family caregivers) of all decedents (QOD-LTC) and of cognitively intact decedents (QOD-LTC-C) wh ... Full text Link to item Cite

Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research.

Journal Article Palliat Med · December 2006 BACKGROUND: In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by dif ... Full text Link to item Cite

Factors that affect infertility patients' decisions about disposition of frozen embryos.

Journal Article Fertil Steril · June 2006 OBJECTIVE: To describe factors that affect infertility patients' decision making regarding their cryopreserved embryos. DESIGN: Forty-six semistructured in-depth interviews of individuals and couples participating in IVF programs. SETTING: Two major southe ... Full text Link to item Cite

Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities.

Journal Article J Palliat Med · February 2006 OBJECTIVE: To describe caregivers' reasons for transfer from home hospice to inpatient facilities, preferences for site of care and death, and their experiences during these transfers. DESIGN: Retrospective qualitative analysis of interviews with caregiver ... Full text Link to item Cite

"Are you at peace?": one item to probe spiritual concerns at the end of life.

Journal Article Arch Intern Med · January 9, 2006 BACKGROUND: Physicians may question their role in probing patients' spiritual distress and the practicality of addressing such issues in the time-limited clinical encounter. Yet, patients' spirituality often influences treatment choices during a course of ... Full text Link to item Cite

Measuring end-of-life care outcomes prospectively.

Journal Article J Palliat Med · 2005 This paper discusses the state of the science in prospective measurement in end-of-life research and identifies particular areas for focused attention. Topics include defining the scope of inquiry, evaluating experiences of patients too ill to communicate, ... Full text Link to item Cite

Measuring quality of life at the end of life: validation of the QUAL-E.

Journal Article Palliat Support Care · March 2004 OBJECTIVES: To validate the QUAL-E, a new measure of quality of life at the end of life. METHODS: We conducted a cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluatio ... Full text Link to item Cite

Congestive heart failure patients' perceptions of quality of life: the integration of physical and psychosocial factors.

Journal Article Aging Ment Health · January 2004 Congestive heart failure (CHF) lowers survival and worsens the quality of life (QOL) of over four million older Americans. Both clinicians and standardized instruments used to assess the QOL of patients with CHF focus primarily on physical symptoms rather ... Full text Link to item Cite

Initial assessment of a new instrument to measure quality of life at the end of life.

Journal Article J Palliat Med · December 2002 Featured Publication PURPOSE: We conducted this study to pilot a new multidimensional instrument to assess the quality of life at the end of life. METHODS: Items were derived from focus groups and a national survey identifying attributes of the quality of dying. Fifty-four ite ... Full text Link to item Cite

Evolution in measuring the quality of dying.

Journal Article J Palliat Med · June 2002 Featured Publication PURPOSE: Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients' and families' experiences. If health care systems are to provide excellent, compassion ... Full text Link to item Cite

Preparing for the end of life: preferences of patients, families, physicians, and other care providers.

Journal Article J Pain Symptom Manage · September 2001 Featured Publication To examine patients', families', and health care providers' preferences regarding preparation for the end of life, attributes of preparation were generated in qualitative focus group discussions and subsequently tested for generalizability in a quantitativ ... Full text Link to item Cite

Factors considered important at the end of life by patients, family, physicians, and other care providers.

Journal Article JAMA · November 15, 2000 Featured Publication CONTEXT: A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking. OBJ ... Full text Link to item Cite

In Search of a Good Death: Attitudes of Patients, Family Members and Health Care Professionals

Journal Article Journal of General Internal Medicine · October 2000 Full text Cite

In search of a good death: observations of patients, families, and providers.

Journal Article Ann Intern Med · May 16, 2000 Featured Publication Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients ... Full text Link to item Cite

The evolution of volunteerism and professional staff within hospice care in North Carolina.

Journal Article Hosp J · 2000 Featured Publication Although the pursuit of Medicare certification has been one of the most controversial events in hospice history no study has examined its impact using data from a defined population of hospices before, during, and after federal legislation was enacted. Thi ... Full text Link to item Cite

Dynamics of functional impairment in late adulthood.

Journal Article Soc Sci Med · April 1994 The inconclusive debate about Fries' theory of "natural death and the compression of morbidity" has diverted attention from two key issues--the modifiability and related dynamics of functional impairment in late adulthood. Evidence is presented from a larg ... Full text Link to item Cite

Race, Aging, and Functional Health

Journal Article Journal of Aging and Health · January 1, 1993 This article presents evidence of a Black/White crossover in functional health. Its existence supports the hypothesis, based on selective survival, that older members of socially disadvantaged populations are relatively more physiologically robust and thus ... Full text Cite