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Steinhauser, Karen E.

Overview:

Dr. Steinhauser's primary interests are end-of-life care, medical sociology and patient-provider relationships. Specifically, she investigates the composition and measurement of the quality of life for patients and their families at the end of life. Dr. Steinhauser is a Health Scientist with the Center for Health Services Research in Primary Care, VA Medical Center, Durham, Assistant Research Professor, Department of Medicine, Senior Fellow with the Duke University Center for Aging, Associate Faculty Scholar with the Duke Institute on Care at the End of Life, and Associate Director of the Program on the Medical Encounter and Palliative Care, Duke and VA Medical Centers. Dr. Steinhauser received her doctoral training in sociology at Duke where she specialized in the study of medical sociology and aging. Her dissertation examined the organizational evolution of hospice care. Particular attention centered on the influence of public funding, via Medicare, on a private sector volunteer organization. Following her graduate training, she completed post-doctoral research in Health Services Research and Development at the Durham VA Medical Center. Her post-doctoral research focused on identifying what patients, families and health care providers value at the end of life. The qualitative and quantitative results of that study served as the foundation in the design of a clinical instrument to assess the quality of dying (the QUAL-E). Dr. Steinhauser is the Principal Investigator of the study to longitudinally validate that instrument. She is also Principal Investigator of a study to develop a twenty-year longitudinal database of hospice care in North Carolina.

Positions:

Associate Professor in Medicine

Medicine, General Internal Medicine
School of Medicine

Member of the Duke Cancer Institute

Duke Cancer Institute
School of Medicine

Education:

Ph.D. 1996

Ph.D. — Duke University

Grants:

TRIADIC EXPECTATIONS: DECISION-MAKING IN ADVANCED CANCER

Administered By
Medicine, General Internal Medicine
AwardedBy
National Palliative Care Research Center
Role
Significant Contributor
Start Date
July 01, 2014
End Date
June 30, 2017

Toward Policies that Accommodate the Concerns of African Americans' in Resolving Disputes about the Use of Life Sustaini

Administered By
Center for the Study of Aging and Human Development
AwardedBy
Greenwall Foundation
Role
Co Investigator
Start Date
March 01, 2015
End Date
February 28, 2017

Palliative Care in Heart Failure (PAL-HF)

Administered By
Duke Clinical Research Institute
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
September 27, 2011
End Date
July 31, 2016

VA IPA for Margaret Falkovic

Administered By
Medicine, General Internal Medicine
AwardedBy
Durham Veterans Affairs Medical Center
Role
Principal Investigator
Start Date
June 01, 2013
End Date
May 31, 2015

Increasing Access to Hospice Care for Older African Americans: A National Study

Administered By
Center for the Study of Aging and Human Development
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
June 01, 2012
End Date
May 31, 2015

Developing Interventions to Improve Function in Seniors with Comorbid Conditions

Administered By
Center for the Study of Aging and Human Development
AwardedBy
National Institutes of Health
Role
Collaborator
Start Date
September 01, 2008
End Date
July 31, 2013

Measuring/Improving Quality of Life in Acute Lung Injury

Administered By
Medicine, Pulmonary, Allergy, and Critical Care Medicine
AwardedBy
National Institutes of Health
Role
Advisor
Start Date
August 10, 2005
End Date
July 31, 2010

Trajectories of Serious Illness: Patients and Caregivers

Administered By
Medicine, General Internal Medicine
AwardedBy
National Institutes of Health
Role
Co Investigator
Start Date
August 01, 2003
End Date
April 30, 2010
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Publications:

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

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, and 12 weeks from baseline (generally two and four weeks after intervention delivery, respectively). Dyads were randomized to either SMI (n=56) or liver disease education (LDE; n=59), both of which involved six weekly telephone sessions. SMI participants were taught coping skills and uncertainty management strategies while LDE participants learned about liver function and how to stay healthy. Outcomes included illness uncertainty, uncertainty management, depression, anxiety, self-efficacy, and quality of life. General linear models were used to test for group differences. RESULTS: No differences were found between the SMI and LDE groups for study outcomes. CONCLUSION: This trial offers insight regarding design for future interventions that may allow greater flexibility in length of delivery beyond our study's 12-week timeframe. PRACTICE IMPLICATIONS: Our study was designed for the time constraints of today's clinical practice setting. This trial is a beginning point to address the unmet needs of these patients and their caregivers as they wait for transplants that could save their lives.

Authors
Bailey, DE; Hendrix, CC; Steinhauser, KE; Stechuchak, KM; Porter, LS; Hudson, J; Olsen, MK; Muir, A; Lowman, S; DiMartini, A; Salonen, LW; Tulsky, JA
MLA Citation
Bailey, DE, Hendrix, CC, Steinhauser, KE, Stechuchak, KM, Porter, LS, Hudson, J, Olsen, MK, Muir, A, Lowman, S, DiMartini, A, Salonen, LW, and Tulsky, JA. "Randomized trial of an uncertainty self-management telephone intervention for patients awaiting liver transplant." Patient Educ Couns 100.3 (March 2017): 509-517.
PMID
28277289
Source
pubmed
Published In
Patient Education and Counseling
Volume
100
Issue
3
Publish Date
2017
Start Page
509
End Page
517
DOI
10.1016/j.pec.2016.10.017

"It's like heart failure. It's chronic…and it will kill you": A qualitative analysis of burnout among hospice and palliative care clinicians.

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.We explored burnout among palliative care clinicians, specifically their experiences with burnout, their perceived sources of burnout, and potential individual, interpersonal, organizational, and policy-level solutions to address burnout.During the 2014 AAHPM/HPNA Annual Assembly, we conducted 3 focus groups to examine: personal narratives of burnout; how burnout differs within hospice and palliative care; and, strategies to mitigate burnout. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative analytic technique.We interviewed 20 palliative care clinicians (14 physicians, 4 advanced practice providers, 2 social workers). Common sources of burnout included: increasing workload, tensions between non-specialists and palliative care specialists, and regulatory issues. We heard grave concerns about the stability of the palliative care workforce, and concerns of providing, high-quality palliative care in light of a distressed, overburdened discipline. Participants proposed anti-burnout solutions including: promoting the provision of generalist palliative care, frequent rotations on-and-off service, and organizational support for self-care. We observed variability in sources of burnout between clinician type and by practice setting, such as role monotony among full-time clinicians.Our results reinforce and expand upon the severity and potential ramifications of burnout on the palliative care workforce. Future research is needed to confirm our findings and to investigate interventions to address or prevent burnout.

Authors
Kavalieratos, D; Siconolfi, DE; Steinhauser, KE; Bull, J; Arnold, RM; Swetz, KM; Kamal, AH
MLA Citation
Kavalieratos, D, Siconolfi, DE, Steinhauser, KE, Bull, J, Arnold, RM, Swetz, KM, and Kamal, AH. ""It's like heart failure. It's chronic…and it will kill you": A qualitative analysis of burnout among hospice and palliative care clinicians." Journal of pain and symptom management (January 4, 2017).
PMID
28063867
Source
epmc
Published In
Journal of Pain and Symptom Management
Publish Date
2017
DOI
10.1016/j.jpainsymman.2016.12.337

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

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 existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness.We conducted a single-arm pre-post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief.The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention.The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

Authors
Steinhauser, KE; Olsen, A; Johnson, KS; Sanders, LL; Olsen, M; Ammarell, N; Grossoehme, D
MLA Citation
Steinhauser, KE, Olsen, A, Johnson, KS, Sanders, LL, Olsen, M, Ammarell, N, and Grossoehme, D. "The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study." Palliative & supportive care 14.5 (October 2016): 456-467.
PMID
26513022
Source
epmc
Published In
Palliative & Supportive Care
Volume
14
Issue
5
Publish Date
2016
Start Page
456
End Page
467
DOI
10.1017/s1478951515001248

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

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 mitigate this risk. Because a new study indicates that burnout in PC clinicians is increasing, we sought to design an acceptable, scalable, and testable intervention tailored to the needs of PC clinicians. In this article, we describe our paradigm for approaching clinician resilience, our conceptual model, and curriculum for a workplace resilience intervention for hospital-based PC teams. Our paradigm for approaching resilience is based on upstream, early intervention. Our conceptual model posits that clinician well-being is influenced by personal resources and work demands. Our curriculum for increasing clinician resilience is based on training in eight resilience skills that are useful for common challenges faced by clinicians. To address workplace issues, our intervention also includes material for the team leader and a clinician perception survey of work demands and workplace engagement factors. The intervention will focus on individual skill building and will be evaluated with measures of resilience, coping, and affect. For PC clinicians, resilience skills are likely as important as communication skills and symptom management as foundations of expertise. Future work to strengthen clinician resilience will likely need to address system issues more directly.

Authors
Back, AL; Steinhauser, KE; Kamal, AH; Jackson, VA
MLA Citation
Back, AL, Steinhauser, KE, Kamal, AH, and Jackson, VA. "Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors." Journal of pain and symptom management 52.2 (August 2016): 284-291.
PMID
26921494
Source
epmc
Published In
Journal of Pain and Symptom Management
Volume
52
Issue
2
Publish Date
2016
Start Page
284
End Page
291
DOI
10.1016/j.jpainsymman.2016.02.002

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

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.We recruited adult patients in oncology units and their informal caregivers. We utilized a two-armed, randomized controlled trial design with data collected at baseline, post-training, and at 2 and 4 weeks after hospital discharge. Primary outcomes were self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving. Secondary outcomes were caregiver depression, anxiety, and burden. The education comparison (EDUC) group received information about community resources. We used general linear models to test for differences in the Enhanced-CT relative to the EDUC group.We consented and randomized 138 dyads: Enhanced-CT = 68 and EDUC = 70. The Enhanced-CT group had a greater increase in caregiver self-efficacy for cancer symptom management and stress management and preparation for caregiving at the post-training assessment compared to the EDUC group but not at 2- and 4-week post-discharge assessments. There were no intervention group differences in depression, anxiety, and burden.An Enhanced-CT protocol resulted in short-term improvements in self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving but not in caregivers' psychological well-being. The lack of sustained effects may be related to the single-dose nature of our intervention and the changing needs of informal caregivers after hospital discharge.

Authors
Hendrix, CC; Bailey, DE; Steinhauser, KE; Olsen, MK; Stechuchak, KM; Lowman, SG; Schwartz, AJ; Riedel, RF; Keefe, FJ; Porter, LS; Tulsky, JA
MLA Citation
Hendrix, CC, Bailey, DE, Steinhauser, KE, Olsen, MK, Stechuchak, KM, Lowman, SG, Schwartz, AJ, Riedel, RF, Keefe, FJ, Porter, LS, and Tulsky, JA. "Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being." Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 24.1 (January 2016): 327-336.
PMID
26062925
Source
epmc
Published In
Supportive Care in Cancer
Volume
24
Issue
1
Publish Date
2016
Start Page
327
End Page
336
DOI
10.1007/s00520-015-2797-3

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

Authors
Powell, RA; Emanuel, L; Handzo, G; Lantos, J; Dunn, LB; Idler, EL; Wilkie, DJ; Massey, K; Summerfelt, WT; Barnes, MJD; Quest, TE; Kestenbaum, A; Steinhauser, K; Fitchett, G; Zollfrank, A; Olsen, AK; Balboni, TA; Sommer, D
MLA Citation
Powell, RA, Emanuel, L, Handzo, G, Lantos, J, Dunn, LB, Idler, EL, Wilkie, DJ, Massey, K, Summerfelt, WT, Barnes, MJD, Quest, TE, Kestenbaum, A, Steinhauser, K, Fitchett, G, Zollfrank, A, Olsen, AK, Balboni, TA, and Sommer, D. "Transcending differences to study the transcendent: an exploratory study of researchers’ and chaplains’ reflections on interdisciplinary spiritual care research collaboration." BMC Palliative Care 14.1 (December 2015).
Source
crossref
Published In
BMC Palliative Care
Volume
14
Issue
1
Publish Date
2015
DOI
10.1186/s12904-015-0004-4

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

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 needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients.We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings.Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services.Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.

Authors
Steinhauser, KE; Voils, CI; Bosworth, H; Tulsky, JA
MLA Citation
Steinhauser, KE, Voils, CI, Bosworth, H, and Tulsky, JA. "What constitutes quality of family experience at the end of life? Perspectives from family members of patients who died in the hospital." Palliative & supportive care 13.4 (August 2015): 945-952.
PMID
25003541
Source
epmc
Published In
Palliative & Supportive Care
Volume
13
Issue
4
Publish Date
2015
Start Page
945
End Page
952
DOI
10.1017/s1478951514000807

Prognostic Disclosure in Acute Myeloid Leukemia (AML): A Qualitative Study of Patient Preferences and Physician Practices

Authors
LeBlanc, TW; Bloom, CT; Davis, DM; Locke, SC; Steinhauser, KE; Ubel, PA; Tulsky, JA; Abernethy, AP
MLA Citation
LeBlanc, TW, Bloom, CT, Davis, DM, Locke, SC, Steinhauser, KE, Ubel, PA, Tulsky, JA, and Abernethy, AP. "Prognostic Disclosure in Acute Myeloid Leukemia (AML): A Qualitative Study of Patient Preferences and Physician Practices." BLOOD 124.21 (December 6, 2014).
Source
wos-lite
Published In
Blood
Volume
124
Issue
21
Publish Date
2014

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

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 central to comprehensive care.This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care.We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability.The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Further analyses produced a final brief scale comprising 17 items, demonstrating appropriate convergent and divergent validity. Test-retest reliability demonstrated expected levels of stability in a highly changeable population. The scale provides an assessment of family experience and includes subscales assessing relationship with health care provider and completion. Additional scale items assess symptom experience and issues of preparation.The QUAL-E (Fam) is a companion instrument to the patient QUAL-E measure of quality of life at the end of life and is part of a package of assessment tools that can help evaluate the entire patient experience and contribute to quality care.

Authors
Steinhauser, KE; Voils, CI; Bosworth, HB; Tulsky, JA
MLA Citation
Steinhauser, KE, Voils, CI, Bosworth, HB, and Tulsky, JA. "Validation of a measure of family experience of patients with serious illness: the QUAL-E (Fam)." Journal of pain and symptom management 48.6 (December 2014): 1168-1181.
PMID
24858740
Source
epmc
Published In
Journal of Pain and Symptom Management
Volume
48
Issue
6
Publish Date
2014
Start Page
1168
End Page
1181
DOI
10.1016/j.jpainsymman.2014.04.006

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

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, controlled trials supporting the use of interdisciplinary palliative care in HF.PAL-HF is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or rehospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. The primary end point is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary end points include changes in anxiety/depression, spiritual well-being, caregiver satisfaction, cost and resource utilization, and a composite of death, HF hospitalization, and quality of life.PAL-HF is a randomized, controlled clinical trial that will help evaluate the efficacy and cost effectiveness of palliative care in advanced HF using a patient-centered outcome as well as clinical and economic end points.

Authors
Mentz, RJ; Tulsky, JA; Granger, BB; Anstrom, KJ; Adams, PA; Dodson, GC; Fiuzat, M; Johnson, KS; Patel, CB; Steinhauser, KE; Taylor, DH; O'Connor, CM; Rogers, JG
MLA Citation
Mentz, RJ, Tulsky, JA, Granger, BB, Anstrom, KJ, Adams, PA, Dodson, GC, Fiuzat, M, Johnson, KS, Patel, CB, Steinhauser, KE, Taylor, DH, O'Connor, CM, and Rogers, JG. "The palliative care in heart failure trial: rationale and design." American heart journal 168.5 (November 2014): 645-651.e1.
PMID
25440791
Source
epmc
Published In
American Heart Journal
Volume
168
Issue
5
Publish Date
2014
Start Page
645
End Page
651.e1
DOI
10.1016/j.ahj.2014.07.018

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

To explore how family members of ICU patients at high risk of dying respond to nursing communication strategies.Family members of ICU patients may face difficult decisions. Nurses are in a position to provide support. Evidence of specific strategies that nurses use to support decision-making and how family members respond to these strategies is lacking.This is a prospective, qualitative descriptive study involving the family members of ICU patients identified as being at high risk of dying.Family members described five nursing approaches: Demonstrating concern, building rapport, demonstrating professionalism, providing factual information, and supporting decision-making. This study provides evidence that when using these approaches, nurses helped family members to cope; to have hope, confidence, and trust; to prepare for and accept impending death; and to make decisions.Knowledge lays a foundation for interventions targeting the areas important to family members and most likely to improve their ability to make decisions and their well-being.

Authors
Adams, JA; Anderson, RA; Docherty, SL; Tulsky, JA; Steinhauser, KE; Bailey, DE
MLA Citation
Adams, JA, Anderson, RA, Docherty, SL, Tulsky, JA, Steinhauser, KE, and Bailey, DE. "Nursing strategies to support family members of ICU patients at high risk of dying." Heart & lung : the journal of critical care 43.5 (September 2014): 406-415.
PMID
24655938
Source
epmc
Published In
Heart & Lung - The Journal of Acute and Critical Care
Volume
43
Issue
5
Publish Date
2014
Start Page
406
End Page
415
DOI
10.1016/j.hrtlng.2014.02.001

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

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.Longitudinal, observational cohort study.Community sample recruited from outpatient clinics at Duke University and Durham Veterans Affairs Medical Centers.Individuals with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n = 62) or end-of-life (EOL; n = 62) care recipient-caregiver dyads.Caregiver experience was measured monthly using the Caregiver Reaction Assessment, which includes caregiver esteem and four domains of burden: schedule, health, family, and finances.During chronic illness and at the end of life, high caregiver esteem was almost universal (95%); more than 25% of the sample reported health, family, and financial burden. Schedule burden was the most prevalent form of burden; EOL caregivers (58%) experienced it more frequently than chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over 1 year. Few factors were associated with burden.Caregiver experience is relatively stable over 1 year and similar in caregivers of individuals in the last year of life and those earlier in the course of chronic illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness.

Authors
Sautter, JM; Tulsky, JA; Johnson, KS; Olsen, MK; Burton-Chase, AM; Lindquist, JH; Zimmerman, S; Steinhauser, KE
MLA Citation
Sautter, JM, Tulsky, JA, Johnson, KS, Olsen, MK, Burton-Chase, AM, Lindquist, JH, Zimmerman, S, and Steinhauser, KE. "Caregiver experience during advanced chronic illness and last year of life." Journal of the American Geriatrics Society 62.6 (June 2014): 1082-1090.
PMID
24803020
Source
epmc
Published In
Journal of American Geriatrics Society
Volume
62
Issue
6
Publish Date
2014
Start Page
1082
End Page
1090
DOI
10.1111/jgs.12841

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

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 specific strategies that nurses use to support decision-making and how family members respond to these strategies is lacking. Methods: This is a prospective, qualitative descriptive study involving the family members of ICU patients identified as being at high risk of dying. Results: Family members described five nursing approaches: Demonstrating concern, building rapport, demonstrating professionalism, providing factual information, and supporting decision-making. This study provides evidence that when using these approaches, nurses helped family members to cope; to have hope, confidence, and trust; to prepare for and accept impending death; and to make decisions. Conclusion: Knowledge lays a foundation for interventions targeting the areas important to family members and most likely to improve their ability to make decisions and their well-being. © 2014 Elsevier Inc.

Authors
Adams, JA; Anderson, RA; Docherty, SL; Tulsky, JA; Steinhauser, KE; Bailey, DE
MLA Citation
Adams, JA, Anderson, RA, Docherty, SL, Tulsky, JA, Steinhauser, KE, and Bailey, DE. "Nursing strategies to support family members of ICU patients at high risk of dying." Heart and Lung: Journal of Acute and Critical Care 43.5 (January 1, 2014): 406-415.
Source
scopus
Published In
Heart & Lung - The Journal of Acute and Critical Care
Volume
43
Issue
5
Publish Date
2014
Start Page
406
End Page
415
DOI
10.1016/j.hrtlng.2014.02.001

The palliative care in heart failure trial: Rationale and design

© 2014 Elsevier Inc. All rights reserved.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, controlled trials supporting the use of interdisciplinary palliative care in HF.Methods: PAL-HF is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or rehospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. The primary end point is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary end points include changes in anxiety/depression, spiritual well-being, caregiver satisfaction, cost and resource utilization, and a composite of death, HF hospitalization, and quality of life.Conclusions: PAL-HF is a randomized, controlled clinical trial that will help evaluate the efficacy and cost effectiveness of palliative care in advanced HF using a patient-centered outcome as well as clinical and economic end points.

Authors
Mentz, RJ; Tulsky, JA; Granger, BB; Anstrom, KJ; Adams, PA; Dodson, GC; Fiuzat, M; Johnson, KS; Patel, CB; Steinhauser, KE; Taylor, DH; O'Connor, CM; Rogers, JG
MLA Citation
Mentz, RJ, Tulsky, JA, Granger, BB, Anstrom, KJ, Adams, PA, Dodson, GC, Fiuzat, M, Johnson, KS, Patel, CB, Steinhauser, KE, Taylor, DH, O'Connor, CM, and Rogers, JG. "The palliative care in heart failure trial: Rationale and design." American Heart Journal 168.5 (January 1, 2014): 645-651.e1.
Source
scopus
Published In
American Heart Journal
Volume
168
Issue
5
Publish Date
2014
Start Page
645
End Page
651.e1
DOI
10.1016/j.ahj.2014.07.018

Validation of a measure of family experience of patients with serious illness: The QUAL-E (fam)

© 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.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 central to comprehensive care. Objectives This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care. Methods We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability. Results The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Further analyses produced a final brief scale comprising 17 items, demonstrating appropriate convergent and divergent validity. Test-retest reliability demonstrated expected levels of stability in a highly changeable population. The scale provides an assessment of family experience and includes subscales assessing relationship with health care provider and completion. Additional scale items assess symptom experience and issues of preparation. Conclusion The QUAL-E (Fam) is a companion instrument to the patient QUAL-E measure of quality of life at the end of life and is part of a package of assessment tools that can help evaluate the entire patient experience and contribute to quality care.

Authors
Steinhauser, KE; Voils, CI; Bosworth, HB; Tulsky, JA
MLA Citation
Steinhauser, KE, Voils, CI, Bosworth, HB, and Tulsky, JA. "Validation of a measure of family experience of patients with serious illness: The QUAL-E (fam)." Journal of Pain and Symptom Management 48.6 (January 1, 2014): 1168-1181.
Source
scopus
Published In
Journal of Pain and Symptom Management
Volume
48
Issue
6
Publish Date
2014
Start Page
1168
End Page
1181
DOI
10.1016/j.jpainsymman.2014.04.006

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

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 focused issues, and more information is needed to understand how this mode can best work for primary care. We conducted a study at the beginning of PACT implementation to elicit stakeholder views on this mode of healthcare delivery, including potential facilitators and barriers. METHODS: We conducted focus groups with primary care patients (n  = 3 groups), providers (n = 2 groups) and staff (n = 2 groups). Questions were informed by Donabedian's framework to evaluate and improve healthcare quality. Content analysis and theme matrix techniques were used to explore themes. Content was assigned a positive or negative valuation to indicate whether it was a facilitator or barrier. PACT principles were used as an organizing framework to present stakeholder responses within the context of the VHA patient-centered medical home program. RESULTS: Scheduled telephone visits could potentially improve care quality and efficiency, but stakeholders were cautious. Themes were identified relating to the following PACT principles: comprehensiveness, patient-centeredness, and continuity of care. In sum, scheduled telephone visits were viewed as potentially beneficial for routine care not requiring physical examination, and patients and providers suggested using them to evaluate need for in-person care; however, visits would need to be individualized, with patients able to discontinue if not satisfied. Patients and staff asserted that providers would need to be kept in the loop for continuity of care. Additionally, providers and staff emphasized needing protected time for these calls. CONCLUSION: These findings inform development of scheduled telephone visits as part of patient-centered medical homes by providing evidence about areas that may be leveraged to most effectively implement this mode of care. Presenting this service as enhanced care, with ability to triage need for in-person clinic visits and consequently provide more frequent contact, may most adequately meet different stakeholder expectations. In this way, scheduled telephone visits may serve as both a substitute for in-person care for certain situations and a supplement to in-person interaction.

Authors
Sperber, NR; King, HA; Steinhauser, K; Ammarell, N; Danus, S; Powers, BJ
MLA Citation
Sperber, NR, King, HA, Steinhauser, K, Ammarell, N, Danus, S, and Powers, BJ. "Scheduled telephone visits in the veterans health administration patient-centered medical home." BMC health services research 14 (January 2014): 145-.
PMID
24690086
Source
epmc
Published In
BMC Health Services Research
Volume
14
Publish Date
2014
Start Page
145
DOI
10.1186/1472-6963-14-145

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

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-threatening illnesses require holistic care, and interest in their existential/spiritual needs is growing. Preparation and life completion interventions have shown positive results in the existential/spiritual care of hospice-eligible patients in the United States. Nurses are in the ideal position to deliver such interventions, but have not been previously evaluated in this context. OBJECTIVE: The objective of this study was to explore the acceptability and feasibility of a nurse-facilitated preparation and life completion intervention (Outlook) in an Australian palliative care patient population. METHODS: Patients discussed their life story, forgiveness, and heritage and legacy over 3 audiotaped sessions. Preintervention/postintervention outcome measures included the Memorial Symptom Assessment Scale, Functional Assessment of Cancer Therapy-Spirituality Well-being, Profile of Mood States, Quality of Life at End of Life Scale, and Center for Epidemiological Depression Scale. Participant feedback was subjected to thematic analysis to understand the patient experience of receiving the intervention. RESULTS: Ten palliative care patients with advanced cancer completed the study. Patients reported the intervention and assessments to be acceptable and feasible and to be overall positively received although with nonsignificant improvements in measures of "meaning and peace" and "preparation for end of life." CONCLUSION: A nurse-facilitated preparation and life completion intervention is acceptable and feasible for palliative care patients with advanced cancer in Australia. IMPLICATIONS FOR PRACTICE: Outlook is a novel, portable, and feasible tool for use by nurses when addressing existential and spiritual domains of care with patients with advanced cancer.

Authors
Keall, RM; Butow, PN; Steinhauser, KE; Clayton, JM
MLA Citation
Keall, RM, Butow, PN, Steinhauser, KE, and Clayton, JM. "Nurse-facilitated preparation and life completion interventions are acceptable and feasible in the Australian palliative care setting: results from a phase 2 trial." Cancer Nurs 36.3 (May 2013): E39-E46.
PMID
23047796
Source
pubmed
Published In
Cancer Nursing
Volume
36
Issue
3
Publish Date
2013
Start Page
E39
End Page
E46
DOI
10.1097/NCC.0b013e3182664c7a

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

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 care unit selected from 210 patients with stage IV breast, prostate, or colon cancer or stage IIIb or IV lung cancer; New York Heart Association class III or IV congestive heart failure; and chronic obstructive pulmonary disease with hypercapnea (Pco2 > 46 mm Hg). Scores on subscales of the Functional Assessment of Chronic Illness Therapy-General survey were measured monthly for 6 months before and after admission to the intensive care unit and were analyzed by using the unit admission date as a point of discontinuous change to illustrate trajectories before and after the admission. RESULTS: Overall, trajectories of well-being declined sharply after admission to the intensive care unit. Declines in physical, functional, and emotional well-being were statistically significant. During the 6 months after admission, physical, functional, and emotional well-being scores trended back up to baseline while social well-being scores continued to decline. CONCLUSIONS: Well-being trajectories declined sharply after admission to the intensive care unit, with recovery in the subsequent 6 months, and may be characterized by common patterns. These results help to better describe intensive care as a marker for advancing illness in patients with advanced chronic illness.

Authors
Chiarchiaro, J; Olsen, MK; Steinhauser, KE; Tulsky, JA
MLA Citation
Chiarchiaro, J, Olsen, MK, Steinhauser, KE, and Tulsky, JA. "Admission to the intensive care unit and well-being in patients with advanced chronic illness." Am J Crit Care 22.3 (May 2013): 223-231.
PMID
23635931
Source
pubmed
Published In
American journal of critical care : an official publication, American Association of Critical-Care Nurses
Volume
22
Issue
3
Publish Date
2013
Start Page
223
End Page
231
DOI
10.4037/ajcc2013346

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

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-threatening illnesses require holistic care, and interest in their existential/spiritual needs is growing. Preparation and life completion interventions have shown positive results in the existential/spiritual care of hospice-eligible patients in the United States. Nurses are in the ideal position to deliver such interventions, but have not been previously evaluated in this context. Objective: The objective of this study was to explore the acceptability and feasibility of a nurse-facilitated preparation and life completion intervention (Outlook) in an Australian palliative care patient population. METHODS: Patients discussed their life story, forgiveness, and heritage and legacy over 3 audiotaped sessions. Preintervention/postintervention outcome measures included the Memorial Symptom Assessment Scale, Functional Assessment of Cancer Therapy-Spirituality Well-being, Profile of Mood States, Quality of Life at End of Life Scale, and Center for Epidemiological Depression Scale. Participant feedback was subjected to thematic analysis to understand the patient experience of receiving the intervention. RESULTS: Ten palliative care patients with advanced cancer completed the study. Patients reported the intervention and assessments to be acceptable and feasible and to be overall positively received although with nonsignificant improvements in measures of "meaning and peace" and "preparation for end of life." CONCLUSION: A nurse-facilitated preparation and life completion intervention is acceptable and feasible for palliative care patients with advanced cancer in Australia. IMPLICATIONS FOR PRACTICE: Outlook is a novel, portable, and feasible tool for use by nurses when addressing existential and spiritual domains of care with patients with advanced cancer.Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

Authors
Keall, RM; Butow, PN; Steinhauser, KE; Clayton, JM
MLA Citation
Keall, RM, Butow, PN, Steinhauser, KE, and Clayton, JM. "Nurse-facilitated preparation and life completion interventions are acceptable and feasible in the australian palliative care setting: Results from a phase 2 trial." Cancer Nursing 36.3 (2013): E39-E46.
Source
scival
Published In
Cancer Nursing
Volume
36
Issue
3
Publish Date
2013
Start Page
E39
End Page
E46
DOI
10.1097/NCC.0b013e3182664c7a

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

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. Objective: To determine whether spiritual support from religious communities influences terminally ill patients' medical care and quality of life (QoL) near death. Design, Setting, and Participants: A US-based, multisite cohort study of 343 patients with advanced cancer enrolled from September 2002 through August 2008 and followed up (median duration, 116 days) until death. Baseline interviews assessed support of patients' spiritual needs by religious communities. End-of-life medical care in the final week included the following: hospice, aggressive EoL measures (care in an intensive care unit [ICU], resuscitation, or ventilation), and ICU death. Main Outcomes and Measures: End-of-life QoL was assessed by caregiver ratings of patient QoL in the last week of life. Multivariable regression analyses were performed on EoL care outcomes in relation to religious community spiritual support, controlling for confounding variables, and were repeated among high religious coping and racial/ethnic minority patients. Results: Patients reporting high spiritual support from religious communities (43%) were less likely to receive hospice (adjusted odds ratio [AOR], 0.37; 95% CI, 0.20-0.70 [P=.002]), more likely to receive aggressive EoL measures (AOR, 2.62; 95% CI, 1.14-6.06 [P=.02]), and more likely to die in an ICU (AOR, 5.22; 95% CI, 1.71-15.60 [P=.004]). Risks of receiving aggressive EoL interventions and ICU deaths were greater among high religious coping (AOR, 11.02; 95% CI, 2.83-42.89 [P<.001]; and AOR, 22.02; 95% CI, 3.24-149.58 [P=.002]; respectively) and racial/ethnic minority patients (AOR, 8.03; 95% CI, 2.04-31.55 [P=.003]; and AOR, 11.21; 95% CI, 2.29-54.88 [P=.003]; respectively). Among patients well-supported by religious communities, receiving spiritual support from the medical team was associated with higher rates of hospice use (AOR, 2.37; 95% CI, 1.03-5.44 [P=.04]), fewer aggressive interventions (AOR, 0.23; 95% CI, 0.06-0.79 [P=.02]) and fewer ICU deaths (AOR, 0.19; 95% CI, 0.05-0.80 [P=.02]); and EoL discussions were associated with fewer aggressive interventions (AOR, 0.12; 95% CI, 0.02-0.63 [P=.01]). Conclusions and Relevance: Terminally ill patients who are well supported by religious communities access hospice care less and aggressive medical interventions more near death. Spiritual care and EoL discussions by the medical team may reduce aggressive treatment, highlighting spiritual care as a key component of EoL medical care guidelines. ©2013 American Medical Association. All rights reserved.

Authors
Balboni, TA; Balboni, M; Enzinger, AC; Gallivan, K; Paulk, ME; Wright, A; Steinhauser, K; VanderWeele, TJ; Prigerson, HG
MLA Citation
Balboni, TA, Balboni, M, Enzinger, AC, Gallivan, K, Paulk, ME, Wright, A, Steinhauser, K, VanderWeele, TJ, and Prigerson, HG. "Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life." JAMA Internal Medicine 173.12 (2013): 1109-1117.
PMID
23649656
Source
scival
Published In
JAMA Internal Medicine
Volume
173
Issue
12
Publish Date
2013
Start Page
1109
End Page
1117
DOI
10.1001/jamainternmed.2013.903

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

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 largely absent from the current literature. These questions are most often used by clinicians as they deliver bad news to cancer patients or address code status at the end of life, but have not been well studied in other diseases or earlier in the disease course. OBJECTIVES: To explore the responses of patients living with serious illness to the question "what is your understanding of your illness?" and to identify similarities and differences in themes and language used by cancer and non-cancer patients to discuss their illness. DESIGN: We conducted a qualitative analysis of patients' responses to "what is your understanding of your illness?" PARTICIPANTS: Two hundred nine subjects, 69 with cancer, 70 CHF, and 70 COPD, who had an estimated 50 % 2-year survival. Mean age was 66 years. APPROACH: Responses were recorded at the baseline interview of a larger, longitudinal study of patients with advanced life-limiting illness (cancer, CHF, or COPD). After thematic content analysis using open coding, investigators conducted pattern analysis to examine variation associated with diagnosis. RESULTS: We identified five major themes: naming the diagnosis or describing the pathophysiology, illness history, prognosis, symptoms, and causality. Responses varied by diagnosis. Cancer patients' responses more often included specific diagnostic details and prognosis, while non-cancer patients referenced symptoms and causality. CONCLUSIONS: Patients' responses to the open-ended question "what is your understanding of your illness?" can provide the clinician with important information and insight on how they view their illness in a non-acute setting. The identified themes can serve as a foundation for patient-centered communication strategies as we strive to build a mutual understanding of illness with patients.

Authors
Morris, DA; Johnson, KS; Ammarell, N; Arnold, RM; Tulsky, JA; Steinhauser, KE
MLA Citation
Morris, DA, Johnson, KS, Ammarell, N, Arnold, RM, Tulsky, JA, and Steinhauser, KE. "What is your understanding of your illness? A communication tool to explore patients' perspectives of living with advanced illness." J Gen Intern Med 27.11 (November 2012): 1460-1466.
PMID
22638605
Source
pubmed
Published In
Journal of General Internal Medicine
Volume
27
Issue
11
Publish Date
2012
Start Page
1460
End Page
1466
DOI
10.1007/s11606-012-2109-2

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

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 serious illnesses and are at risk for impaired well-being. OBJECTIVES: To expand understanding of caregiver burden and psychosocial-spiritual outcomes among understudied groups of caregivers-cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers-by including differences by disease in a diverse population. METHODS: The present study included 139 caregiver/patient dyads. Independent variables included patient diagnosis and function; and caregiver demographics, and social and coping resources. Cross-sectional analyses examined distributions of these independent variables between diagnoses, and logistic regression examined correlates of caregiver burden, anxiety, depressive symptoms, and spiritual well-being. RESULTS: There were significant differences in patient functioning and caregiver demographics and socioeconomic status between diagnosis groups but few differences in caregiver burden or psychosocial-spiritual outcomes by diagnosis. The most robust social resources indicator of caregiver burden was desire for more help from friends and family. Anxious preoccupation coping style was robustly associated with caregiver psychosocial-spiritual outcomes. CONCLUSION: Caregiver resources, not patient diagnosis or illness severity, are the primary correlates associated with caregiver burden. Additionally, caregiver burden is not disease specific to those examined here, but it is rather a relatively universal experience that may be buffered by social resources and successful coping styles.

Authors
Burton, AM; Sautter, JM; Tulsky, JA; Lindquist, JH; Hays, JC; Olsen, MK; Zimmerman, SI; Steinhauser, KE
MLA Citation
Burton, AM, Sautter, JM, Tulsky, JA, Lindquist, JH, Hays, JC, Olsen, MK, Zimmerman, SI, and Steinhauser, KE. "Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers." J Pain Symptom Manage 44.3 (September 2012): 410-420.
PMID
22727950
Source
pubmed
Published In
Journal of Pain and Symptom Management
Volume
44
Issue
3
Publish Date
2012
Start Page
410
End Page
420
DOI
10.1016/j.jpainsymman.2011.09.018

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

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 describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy. METHODS: We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question. RESULTS: We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations. CONCLUSIONS: Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

Authors
Schell, JO; Patel, UD; Steinhauser, KE; Ammarell, N; Tulsky, JA
MLA Citation
Schell, JO, Patel, UD, Steinhauser, KE, Ammarell, N, and Tulsky, JA. "Discussions of the kidney disease trajectory by elderly patients and nephrologists: a qualitative study." Am J Kidney Dis 59.4 (April 2012): 495-503.
PMID
22221483
Source
pubmed
Published In
American Journal of Kidney Diseases
Volume
59
Issue
4
Publish Date
2012
Start Page
495
End Page
503
DOI
10.1053/j.ajkd.2011.11.023

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.

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 and family perspectives. METHODS: To assess the correlation between overall satisfaction between providers (attending, housestaff, and nurses) as well as family members for decedents who died in our hospital, we conducted a satisfaction survey regarding care in the last three days of life. The nine item survey was administered within 1 week of the patient s death to care providers and approximately 8 to 12 weeks to next of kin. RESULTS: There were 166 deaths examined over the four month study period. Overall satisfaction with care was 3.02 out of 4.0, and differed by respondent group (p= 0.035). Correlation between respondents was very low (range 0.02 to 0.51). The least discordance was between residents and interns (0.5), who had the lowest level of satisfaction (2.72). Housestaff and attendings had the lowest overall correlation in mean satisfaction scores (0.05). Most providers knew their patients for 24 hours or less. CONCLUSIONS: Overall satisfaction was high, but there was discordance among different providers. Continuity of care was limited. Age and location of death alone did not significantly affect satisfaction with end-of-life care. Implications of this type of research for improving end of life care at academic centers are discussed.

Authors
Galanos, AN; Morris, DA; Pieper, CF; Poppe-Ries, AM; Steinhauser, KE
MLA Citation
Galanos, AN, Morris, DA, Pieper, CF, Poppe-Ries, AM, and Steinhauser, KE. "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." Am J Hosp Palliat Care 29.1 (February 2012): 47-52.
PMID
21546403
Source
pubmed
Published In
American Journal of Hospice & Palliative Medicine
Volume
29
Issue
1
Publish Date
2012
Start Page
47
End Page
52
DOI
10.1177/1049909111407176

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

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 feasibility of delivering an individualized caregiver training program before hospital discharge of older veterans. As an exploratory aim, the impact of this training on caregiver self-efficacy and preparedness was determined. METHODS: : The sample consisted 50 caregiver-patient dyads. Training included medication management, identification of medical red flags, identification of Veterans Affairs community-based resources, and specific caregiver concerns about home care. Program feasibility was determined by whether caregivers could be recruited and could complete the training before patients were discharged from the hospital. Caregiver self-efficacy (using modified Lorig's self-efficacy scale) and preparedness (using Preparedness in Caregiving Scale) were assessed before the training (T1), immediately after the training (T2), and 1 week (T3) and 4 weeks (T4) after hospital discharge. RESULTS: : One thousand six hundred ninety inpatients were screened, 252 of whom (15%) met study eligibility criteria. Of these, 112 were approached, and 50 dyads (44.6%) agreed to participate. Of the 50 consented dyads, 40 caregivers (80%) received the training. The mean self-efficacy among caregivers improved at T2, and the improvement was sustained at T3 and T4 (T1, 783.86; T2, 903.64; T3, 867.85; T4, 877.02). The same trend was observed in caregiving preparedness (T1, 26. 95; T2, 30.55; T3, 28.88; T4, 28.91). DISCUSSION: : Providing an individualized training program to informal caregivers of hospitalized older veterans was not only feasible but was also associated with increased self-efficacy and caregiving preparedness. This study has the potential to assist caregivers in their home care of older veterans after hospital discharge.

Authors
Hendrix, CC; Hastings, SN; Van Houtven, C; Steinhauser, K; Chapman, J; Ervin, T; Sanders, L; Weinberger, M
MLA Citation
Hendrix, CC, Hastings, SN, Van Houtven, C, Steinhauser, K, Chapman, J, Ervin, T, Sanders, L, and Weinberger, M. "Pilot study: individualized training for caregivers of hospitalized older veterans." Nurs Res 60.6 (November 2011): 436-441.
PMID
22067595
Source
pubmed
Published In
Nursing Research
Volume
60
Issue
6
Publish Date
2011
Start Page
436
End Page
441
DOI
10.1097/NNR.0b013e31823583c7

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

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, and evaluation of such interventions. DESIGN: A qualitative data content analysis of interview transcripts to identify themes related to comorbidity. SETTING: An outpatient low-vision rehabilitation program for macular disease. PARTICIPANTS: In 2007/08, 98 individuals undergoing low-vision rehabilitation and their companions provided 624 semistructured interviews that elicited perceptions about barriers and facilitators of successful program participation. RESULTS: The interviews revealed five broad themes about comorbidity: (i) "good days, bad days," reflecting participants' fluctuating health status during the program because of concurrent medical problems; (ii) "communication barriers." which were sometimes due to participant impairments and sometimes situational; (iii) "overwhelmed," which encompassed pragmatic and emotional concerns of participants and caregivers; (iv) "delays," which referred to the tendency of comorbidities to delay progress in the program and to confer added inconvenience during lengthy appointments; and (v) value of companion involvement in overcoming some barriers imposed by comorbid conditions. CONCLUSION: This study provides a taxonomy and conceptual framework for understanding consequences of comorbidity in the experience of individuals receiving a health service. If confirmed in individuals receiving interventions for other index diseases, the framework suggests actionable items to improve care and facilitate research involving older adults.

Authors
Whitson, HE; Steinhauser, K; Ammarell, N; Whitaker, D; Cousins, SW; Ansah, D; Sanders, LL; Cohen, HJ
MLA Citation
Whitson, HE, Steinhauser, K, Ammarell, N, Whitaker, D, Cousins, SW, Ansah, D, Sanders, LL, and Cohen, HJ. "Categorizing the effect of comorbidity: a qualitative study of individuals' experiences in a low-vision rehabilitation program." J Am Geriatr Soc 59.10 (October 2011): 1802-1809.
PMID
22091493
Source
pubmed
Published In
Journal of American Geriatrics Society
Volume
59
Issue
10
Publish Date
2011
Start Page
1802
End Page
1809
DOI
10.1111/j.1532-5415.2011.03602.x

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

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 differently than those with other illnesses, the former being seen as terminal vs. chronic. OBJECTIVES: The purpose of this study was to compare the functional capacity, emotional well-being, and quality of life of patients in three disease groups to assess whether diagnosis distinguishes differences in patient experience, and compare patients with cancer and noncancer diagnoses. METHODS: Baseline data from a cohort study of 210 patients who had an estimated 50% two-year mortality were analyzed. The patients had Stage IV breast, prostate, or colon cancer; Stage IIIb or IV lung cancer; New York Heart Association Stage III or IV CHF with a left ventricular ejection fraction of <40%; or COPD with hypercapnea (pC02>46) and at least one hospitalization or Emergency Department visit during the past year. Measures included the Rosow-Breslau Activities of Daily Living/Instrumental Activities of Daily Living tool, Profile of Mood States anxiety subscale, brief Centers for Epidemiologic Studies Depression Scale, and the Functional Assessment of Cancer Therapy-General quality-of-life instrument. Analyses included descriptive statistics, analysis of variance, and adjusted linear regression models. RESULTS: A majority of illness outcomes did not differ by diagnostic category. Functional status was associated with diagnosis, with CHF and COPD patients faring worse than those with cancer. Overall, illness experience was most significantly related to disease severity, demographics, and emotional and social well-being. CONCLUSION: Comparing patients with advanced cancer, CHF, and COPD, illness experience was more similar than different. Patients living with life-limiting illnesses other than cancer may benefit from whole-person services often extended to cancer patients.

Authors
Steinhauser, KE; Arnold, RM; Olsen, MK; Lindquist, J; Hays, J; Wood, LL; Burton, AM; Tulsky, JA
MLA Citation
Steinhauser, KE, Arnold, RM, Olsen, MK, Lindquist, J, Hays, J, Wood, LL, Burton, AM, and Tulsky, JA. "Comparing three life-limiting diseases: does diagnosis matter or is sick, sick?." J Pain Symptom Manage 42.3 (September 2011): 331-341.
PMID
21276704
Source
pubmed
Published In
Journal of Pain and Symptom Management
Volume
42
Issue
3
Publish Date
2011
Start Page
331
End Page
341
DOI
10.1016/j.jpainsymman.2010.11.006

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

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 may have difficulty attending religious services. METHOD: A cross-sectional study design nested in an observational epidemiologic cohort study was used. The regionally representative sample of patients had metastatic lung, colorectal, breast, and prostate cancer (n = 70); Class III and IV congestive heart failure (n = 70); or chronic obstructive pulmonary disease with hypercapnea (n = 70) and were observed regarding clergy-laity support in their natural environments. DEPENDENT VARIABLE: 10-item Center for Epidemiologic Studies - Depression Scale. INDEPENDENT VARIABLE: A one-item question measuring how much helpful support patients received from clergy or other persons from church, temple, synagogue, or mosque. Covariates: demographic, health, social support, religiousness. RESULTS: Depressed mood was negatively associated with clergy-laity support in a non-linear pattern. Depressed mood was also positively associated with functional deficits and a lifetime history of difficulties related to religious involvement. SIGNIFICANCE OF RESULTS: In lieu of worship attendance when people are sick, home visits by members of a patient's religious community may bolster mood by providing continuity of instrumental, emotional, and spiritual support.

Authors
Hays, JC; Wood, L; Steinhauser, K; Olson, MK; Lindquist, JH; Tulsky, JA
MLA Citation
Hays, JC, Wood, L, Steinhauser, K, Olson, MK, Lindquist, JH, and Tulsky, JA. "Clergy-laity support and patients' mood during serious illness: a cross-sectional epidemiologic study." Palliat Support Care 9.3 (September 2011): 273-280.
PMID
21838948
Source
pubmed
Published In
Palliative & Supportive Care
Volume
9
Issue
3
Publish Date
2011
Start Page
273
End Page
280
DOI
10.1017/S1478951511000228

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

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 acceptability and feasibility in an Australian palliative care setting. This paper reports a qualitative analysis of the participants' responses to the intervention. The intervention sessions were audiotaped, transcribed, and analysed using interpretative phenomenological analysis. RESULTS: Eleven participants were recruited from inpatient and outpatient hospital and hospice settings. Three overarching themes were identified: life review, current situation, and legacy/principles. CONCLUSIONS: The intervention provided insights into individual palliative care patients' sense of self, views of their current situation, hopes, and how they would like to be remembered.

Authors
Keall, RM; Butow, PN; Steinhauser, KE; Clayton, JM
MLA Citation
Keall, RM, Butow, PN, Steinhauser, KE, and Clayton, JM. "Discussing life story, forgiveness, heritage, and legacy with patients with life-limiting illnesses." Int J Palliat Nurs 17.9 (September 2011): 454-460.
PMID
22067737
Source
pubmed
Published In
International Journal of Palliative Nursing
Volume
17
Issue
9
Publish Date
2011
Start Page
454
End Page
460
DOI
10.12968/ijpn.2011.17.9.454

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

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 examine the association of spiritual history and current spiritual well-being with symptoms of anxiety and depression in patients with advanced illness. DESIGN: Cross-sectional cohort study PARTICIPANTS: Two hundred and ten patients with advanced illness, of whom 1/3 were diagnosed with cancer, 1/3 COPD, and 1/3 CHF. The mean age of the sample was 66 years, and 91% were Christian. MEASUREMENTS: Outcome measures were the Profile of Mood States' Anxiety Subscale (POMS) and 10-item Center for Epidemiologic Studies Depression Scale (CESD). Predictors were three subscales of the Spiritual History Scale measuring past religious help-seeking and support, past religious participation, and past negative religious experiences and two subscales of the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale measuring the role of faith in illness and meaning, peace, and purpose in life. We conducted multiple regression analyses, controlling for demographics, disease type and severity, self-rated religiousness/spirituality, and frequency of religious attendance and devotion. RESULTS: In adjusted analyses, greater spiritual well-being, including both beliefs about the role of faith in illness and meaning, peace, and purpose in life were associated with fewer symptoms of anxiety (P ≤ 0.001) and depression (P < 0.001). Greater past negative religious experiences were associated with more symptoms of anxiety (P = 0.04) and depression (P = 0.004). No other measures of spiritual history were associated with the outcomes. CONCLUSIONS: In this diverse sample of seriously ill patients, current spiritual well-being and past negative religious experiences were associated with symptoms of anxiety and depression. Healthcare providers should consider asking about current spiritual well-being and past negative religious experiences in their assessment of seriously ill patients with symptoms of anxiety and depression.

Authors
Johnson, KS; Tulsky, JA; Hays, JC; Arnold, RM; Olsen, MK; Lindquist, JH; Steinhauser, KE
MLA Citation
Johnson, KS, Tulsky, JA, Hays, JC, Arnold, RM, Olsen, MK, Lindquist, JH, and Steinhauser, KE. "Which domains of spirituality are associated with anxiety and depression in patients with advanced illness?." J Gen Intern Med 26.7 (July 2011): 751-758.
PMID
21336669
Source
pubmed
Published In
Journal of General Internal Medicine
Volume
26
Issue
7
Publish Date
2011
Start Page
751
End Page
758
DOI
10.1007/s11606-011-1656-2

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

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 diverse U.S. fertility clinics. PATIENT(S): 1020 fertility patients with cryopreserved embryos. INTERVENTION(S): Self-administered questionnaire. MAIN OUTCOME MEASURE(S): Likelihood of selecting each of five conventional embryo disposition options: store for reproduction, thaw and discard, donate to another couple, freeze indefinitely, and donate for research; likelihood of selecting each of two alternative options identified in previous research: placement of embryos in the woman's body at an infertile time, or a disposal ceremony; importance of each of 26 considerations to disposition decisions; and views on the embryo's moral status. RESULT(S): We found that 54% of respondents with cryopreserved embryos were very likely to use them for reproduction, 21% were very likely to donate for research, 7% or fewer were very likely to choose any other option. Respondents who ascribed high importance to concerns about the health or well-being of the embryo, fetus, or future child were more likely to thaw and discard embryos or freeze them indefinitely. CONCLUSION(S): Fertility patients frequently prefer disposition options that are not available to them or find the available options unacceptable. Restructuring and standardizing the informed consent process and ensuring availability of all disposition options may benefit patients, facilitate disposition decisions, and address problems of long-term storage.

Authors
Lyerly, AD; Steinhauser, K; Voils, C; Namey, E; Alexander, C; Bankowski, B; Cook-Deegan, R; Dodson, WC; Gates, E; Jungheim, ES; McGovern, PG; Myers, ER; Osborn, B; Schlaff, W; Sugarman, J; Tulsky, JA; Walmer, D; Faden, RR; Wallach, E
MLA Citation
Lyerly, AD, Steinhauser, K, Voils, C, Namey, E, Alexander, C, Bankowski, B, Cook-Deegan, R, Dodson, WC, Gates, E, Jungheim, ES, McGovern, PG, Myers, ER, Osborn, B, Schlaff, W, Sugarman, J, Tulsky, JA, Walmer, D, Faden, RR, and Wallach, E. "Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey." Fertil Steril 93.2 (February 2010): 499-509.
PMID
19061998
Source
pubmed
Published In
Fertility and Sterility
Volume
93
Issue
2
Publish Date
2010
Start Page
499
End Page
509
DOI
10.1016/j.fertnstert.2008.10.015

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

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 elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses. METHOD: We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the intervention arm met with a facilitator three times. Session 1 focused on life story, Session 2 on forgiveness, and Session 3, on heritage and legacy. RESULTS: Eighteen subjects participated in the pilot intervention interviews. Subjects from a range of socioeconomic backgrounds completed the intervention with equal facility. Results from Session 1 demonstrate narrative responses participants gave as they reconnected with previous life roles, values, and accomplishments. The second session illustrated reflections of choices one might have made differently and exploration of forgiveness offered and sought. Content from the first and second sessions laid the foundation for discussing Session 3's lessons learned and heritage and legacy. Responses are summarized to assist clinicians in anticipating life review content that may improve overall quality of life at the end of life. SIGNIFICANCE OF RESULTS: Discussions of life completion may improve important health outcomes for patients at the end of life. This intervention may provide a brief, standardized, and transportable means for improving the quality of life of patients with advanced serious illness.

Authors
Steinhauser, KE; Alexander, SC; Byock, IR; George, LK; Tulsky, JA
MLA Citation
Steinhauser, KE, Alexander, SC, Byock, IR, George, LK, and Tulsky, JA. "Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life." Palliat Support Care 7.4 (December 2009): 393-404.
PMID
19939302
Source
pubmed
Published In
Palliative & Supportive Care
Volume
7
Issue
4
Publish Date
2009
Start Page
393
End Page
404
DOI
10.1017/S147895150999040X

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

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 Beneficiary Survey (MCBS), 1997-2001. STUDY DESIGN: Using logistic regression and ordinary least squares, we examine the association between a person's in-home network of care and the use of Medicare hospice services in the last year of life. We also examine whether the care-dyad relationship is associated with different hospice use patterns. DATA EXTRACTION: All individuals in the MCBS who lived at home at the time of the interview and who died between 1998 and 2001, 1404 persons. PRINCIPAL FINDINGS: People receiving formal home care had a much higher chance of enrolling in hospice prior to death. Informal care did not influence the likelihood of hospice but was associated with longer use among hospice users. Daughter caregivers increased the likelihood and duration of hospice use whereas sons significantly decreased the likelihood. CONCLUSIONS: Because formal care is associated with increased use of hospice, future work should examine whether patients without an in-home network faced access barriers. Caregiver relationships had large effects on length of hospice stays, yet we do not know whether changes moved a patient closer to or further away from their optimum use of the benefit.

Authors
Van Houtven, CH; Taylor, DH; Steinhauser, K; Tulsky, JA
MLA Citation
Van Houtven, CH, Taylor, DH, Steinhauser, K, and Tulsky, JA. "Is a home-care network necessary to access the Medicare hospice benefit?." J Palliat Med 12.8 (August 2009): 687-694.
PMID
19591625
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
12
Issue
8
Publish Date
2009
Start Page
687
End Page
694
DOI
10.1089/jpm.2008.0255

Using qualitative methods to explore key questions in palliative care.

Authors
Steinhauser, KE; Barroso, J
MLA Citation
Steinhauser, KE, and Barroso, J. "Using qualitative methods to explore key questions in palliative care." J Palliat Med 12.8 (August 2009): 725-730.
PMID
19663573
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
12
Issue
8
Publish Date
2009
Start Page
725
End Page
730
DOI
10.1089/jpm.2009.9580

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

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 intervention (Outlook) that promotes discussions of end-of-life preparation and completion on health outcomes in dying persons, including pain and symptoms, physical function, emotional function (anxiety and depression), spiritual well-being, and quality of life at the end of life. DESIGN: A three-arm pilot randomized control trial. Subjects were recruited from inpatient and outpatient hospital, palliative care, and hospice settings. Intervention subjects met with a facilitator three times and discussed issues related to life review, forgiveness, and heritage and legacy. Attention control subjects met with a facilitator three times and listened to a nonguided relaxation CD. True control subjects received no intervention. MEASUREMENTS: Preoutcomes and postoutcomes included the Memorial Symptom Assessment Scale, QUAL-E, Rosow-Breslau ADL Scale, Profile of Mood States anxiety sub-scale, the CESD short version, and the Daily Spiritual Experience Scale. RESULTS: Eighty-two hospice eligible patients enrolled in the study; 38 were women, 35 were African American. Participants' primary diagnoses included cancer (48), heart disease (5) lung disease (10), and other (19) Ages ranged from 28-96. Participants in the active discussion intervention showed improvements in functional status, anxiety, depression, and preparation for end of life. CONCLUSIONS: The Outlook intervention was acceptable to patients from a variety of educational and ethnic backgrounds and offers a brief, manualized, intervention for emotional and spiritual concerns.

Authors
Steinhauser, KE; Alexander, SC; Byock, IR; George, LK; Olsen, MK; Tulsky, JA
MLA Citation
Steinhauser, KE, Alexander, SC, Byock, IR, George, LK, Olsen, MK, and Tulsky, JA. "Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial." J Palliat Med 11.9 (November 2008): 1234-1240.
PMID
19021487
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
11
Issue
9
Publish Date
2008
Start Page
1234
End Page
1240
DOI
10.1089/jpm.2008.0078

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

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 Minimum Data Set, 24% of residents experienced pain in the preceding week. Reports of pain decreased as cognitive abilities declined: nurses completing the Minimum Data Set reported pain prevalence of 34%, 31%, 24%, and 10%, respectively, for residents with no, mild, moderate, and severe cognitive impairment (P<0.001), demonstrating a "dose-response"-type result. Eighty percent of cognitively intact residents received pain medications, compared to 56% of residents with severe impairment (P<0.001). Cognitively impaired residents had fewer orders for scheduled pain medications than did their less cognitively impaired peers. Yet the presence of diagnoses likely to cause pain did not vary based on residents' cognitive status. We conclude that pain is underrecognized in nursing home residents with cognitive impairment and that cognitively impaired residents often have orders for "as needed" analgesics when scheduled medications would be more appropriate.

Authors
Reynolds, KS; Hanson, LC; DeVellis, RF; Henderson, M; Steinhauser, KE
MLA Citation
Reynolds, KS, Hanson, LC, DeVellis, RF, Henderson, M, and Steinhauser, KE. "Disparities in pain management between cognitively intact and cognitively impaired nursing home residents." J Pain Symptom Manage 35.4 (April 2008): 388-396.
PMID
18280101
Source
pubmed
Published In
Journal of Pain and Symptom Management
Volume
35
Issue
4
Publish Date
2008
Start Page
388
End Page
396
DOI
10.1016/j.jpainsymman.2008.01.001

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

Authors
Reynolds, KS; Hanson, LC; DeVellis, RF; Henderson, M; Steinhauser, KE
MLA Citation
Reynolds, KS, Hanson, LC, DeVellis, RF, Henderson, M, and Steinhauser, KE. "Disparities in pain management between cognitively intact and cognitively impaired nursing home residents." JOURNAL OF PAIN AND SYMPTOM MANAGEMENT 35.4 (April 2008): 388-396.
Source
wos-lite
Published In
Journal of Pain and Symptom Management
Volume
35
Issue
4
Publish Date
2008
Start Page
388
End Page
396
DOI
10.1016/j.painsymman.2008.01.001

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

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 institutional settings. METHODS: We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care--advance care planning and pain management--and on residents' demographic and health status variables. Analyses tested for differences by race and age. RESULTS: White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race. SIGNIFICANCE OF RESULTS: To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

Authors
Reynolds, KS; Hanson, LC; Henderson, M; Steinhauser, KE
MLA Citation
Reynolds, KS, Hanson, LC, Henderson, M, and Steinhauser, KE. "End-of-life care in nursing home settings: do race or age matter?." Palliat Support Care 6.1 (March 2008): 21-27.
PMID
18282341
Source
pubmed
Published In
Palliative & Supportive Care
Volume
6
Issue
1
Publish Date
2008
Start Page
21
End Page
27
DOI
10.1017/S1478951508000047

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

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 pressure-lowering regimens. Participants were 38 married and unmarried veterans with a diagnosis of hypertension and 13 female spouses. Eight patient and four spouse focus groups were conducted. A directed approach to content analysis was used to determine the facilitators of and barriers to adherence. For this report, all discussion concerning the topic of sexual relations was extracted. RESULTS: Male patients viewed sexual intercourse as a high priority and felt that a lack of sexual intercourse was unnatural. They pursued strategies to preserve their potency, including discontinuing or selectively adhering to their medications and obtaining treatments for impotence. In contrast, spouses felt that sexual intercourse was a low priority and that a lack of sexual intercourse was natural. They discouraged their husbands from seeking treatments for impotence. CONCLUSION: Although the primary study was not designed to explore issues of sexual function, the issue emerged spontaneously in the majority of discussions, indicating that sexuality is important in this context for both male patients and their spouses. Physicians should address sexual side effects of antihypertensive medications with patients, ideally involving spouses.

Authors
Voils, CI; Sandelowski, M; Dahm, P; Blouin, R; Bosworth, HB; Oddone, EZ; Steinhauser, KE
MLA Citation
Voils, CI, Sandelowski, M, Dahm, P, Blouin, R, Bosworth, HB, Oddone, EZ, and Steinhauser, KE. "Selective adherence to antihypertensive medications as a patient-driven means to preserving sexual potency. (Published online)" Patient Prefer Adherence 2 (February 2, 2008): 201-206.
PMID
19920964
Source
pubmed
Published In
Patient Preference and Adherence
Volume
2
Publish Date
2008
Start Page
201
End Page
206

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

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 sample of age-eligible Medicare beneficiaries who died from 1993 to 2000, the use of hospice and other Medicare-financed care was analyzed during the last year of life for different groups of hospice users. It was found that 84.5% (n = 1029) of hospice users initiate and use it continuously until death; 15.5% of hospice users are discharged alive, with some later reinitiating hospice. The main difference between continuous hospice users and those discharged alive is the time survived after initial hospice use (those discharged alive live longer). After controlling for survival time, costs per day survived are similar for all groups. This study suggests several motivations for being discharged alive that are worthy of more research.

Authors
Taylor, DH; Steinhauser, K; Tulsky, JA; Rattliff, J; Van Houtven, CH
MLA Citation
Taylor, DH, Steinhauser, K, Tulsky, JA, Rattliff, J, and Van Houtven, CH. "Characterizing hospice discharge patterns in a nationally representative sample of the elderly, 1993-2000." Am J Hosp Palliat Care 25.1 (February 2008): 9-15.
PMID
18198361
Source
pubmed
Published In
American Journal of Hospice & Palliative Medicine
Volume
25
Issue
1
Publish Date
2008
Start Page
9
End Page
15
DOI
10.1177/1049909107310136

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

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 selection bias and the period of cost comparison used. Accounting for these, this study focuses on the length of hospice use that maximizes reductions in medical expenditures near death. We used a retrospective, case/control study of Medicare decedents (1993-2003, National Long Term Care Survey screening sample) to compare 1819 hospice decedents, with 3638 controls matched via their predicted likelihood of dying while using a hospice. Variables used to create matches were demographic, primary medical condition, cost of Medicare financed care prior to the last year of life, nursing home residence and Medicaid eligibility. Hospice use reduced Medicare program expenditures during the last year of life by an average of $2309 per hospice user; expenditures after initiation of hospice were $7318 for hospice users compared to $9627 for controls (P<0.001). On average, hospice use reduced Medicare expenditures during all but 2 of hospice users' last 72 days of life; about $10 on the 72nd day prior to death, with savings increasing to more than $750 on the day of death. Maximum cumulative expenditure reductions differed by primary condition. The maximum reduction in Medicare expenditures per user was about $7000, which occurred when a decedent had a primary condition of cancer and used a hospice for their last 58-103 days of life. For other primary conditions, the maximum savings of around $3500 occurred when a hospice was used for the last 50-108 days of life. Given the length of hospice use observed in the Medicare program, increasing the length of hospice use for 7 in 10 Medicare hospice users would increase savings.

Authors
Taylor, DH; Ostermann, J; Van Houtven, CH; Tulsky, JA; Steinhauser, K
MLA Citation
Taylor, DH, Ostermann, J, Van Houtven, CH, Tulsky, JA, and Steinhauser, K. "What length of hospice use maximizes reduction in medical expenditures near death in the US Medicare program?." Soc Sci Med 65.7 (October 2007): 1466-1478.
PMID
17600605
Source
pubmed
Published In
Social Science & Medicine
Volume
65
Issue
7
Publish Date
2007
Start Page
1466
End Page
1478
DOI
10.1016/j.socscimed.2007.05.028

Measuring the quality of dying in long-term care.

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) who die in nursing homes (NHs) and residential care or assisted living (RC/AL) facilities. DESIGN: Using two levels of exploratory factor analysis, 15 candidate items for the QOD-LTC and 36 candidate items for the QOD-LTC-C were tested using multiple criteria to determine factor structure and interpretability of the quality of dying in long-term care (LTC). SETTING: One hundred seventeen RC/AL facilities and 31 NHs in FL, MD, NC, and NJ. PARTICIPANTS: Family (n=439) and staff (n=332) caregivers of 633 decedents from a stratified random sample from RC/AL facilities and NHs in four states. MEASUREMENTS: Trained interviewers asked respondents to rate statements describing potentially important aspects of the quality of dying using a 5-point Likert scale. The scale items were analyzed using exploratory factor analysis with communalities set to unity using a Promax rotation. RESULTS: The 11-item QOD-LTC (alpha=0.66), appropriate for surrogate respondents for all decedents, consists of three domains (personhood, closure, preparatory tasks). The 23-item instrument for surrogate respondents of cognitively intact decedents, the QOD-LTC-C (alpha=0.85), consists of five domains (sense of purpose, closure, control, social connection, preparatory tasks). CONCLUSION: The QOD-LTC and QOD-LTC-C are psychometrically acceptable measures of the quality of the dying experience, developed for and tested in LTC settings. Use of these measures can increase understanding of the dying experience in LTC.

Authors
Munn, JC; Zimmerman, S; Hanson, LC; Williams, CS; Sloane, PD; Clipp, EC; Tulsky, JA; Steinhauser, KE
MLA Citation
Munn, JC, Zimmerman, S, Hanson, LC, Williams, CS, Sloane, PD, Clipp, EC, Tulsky, JA, and Steinhauser, KE. "Measuring the quality of dying in long-term care." J Am Geriatr Soc 55.9 (September 2007): 1371-1379.
PMID
17915342
Source
pubmed
Published In
Journal of American Geriatrics Society
Volume
55
Issue
9
Publish Date
2007
Start Page
1371
End Page
1379

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

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 difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions. OBJECTIVES: To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers. DESIGN: A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure (CHF) LVEFB < 40 or advanced chronic obstructive pulmonary disease (COPD) pCO(2) > 46, and their caregivers, interviewed monthly for up to two years. Patients were identified using clinical and administrative databases from one geographic region. RESULTS: Representative and successful ascertainment was associated with use of clinical criteria and medical record review versus physician or other provider prognostication, use of recruitment letters from personal physician, recruitment letter content, brochure content, small monetary incentives, refined phone scripts, use of matched ethnicity interviewers, in-home and phone interview strategies, measure selection, patient and caregiver rapport, and on-going staff support (including grief and bereavement). CONCLUSIONS: Recruitment to prospective longitudinal studies at the end of life is difficult, but possible. The lessons learned from this study are applicable to future investigators conducting prospective research.

Authors
Steinhauser, KE; Clipp, EC; Hays, JC; Olsen, M; Arnold, R; Christakis, NA; Lindquist, JH; Tulsky, JA
MLA Citation
Steinhauser, KE, Clipp, EC, Hays, JC, Olsen, M, Arnold, R, Christakis, NA, Lindquist, JH, and Tulsky, JA. "Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research." Palliat Med 20.8 (December 2006): 745-754. (Review)
PMID
17148529
Source
pubmed
Published In
Palliative Medicine
Volume
20
Issue
8
Publish Date
2006
Start Page
745
End Page
754
DOI
10.1177/0269216306073112

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

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 southeastern academic medical centers. PATIENT(S): Fifty-three individuals, including 31 women, 8 men, and 7 couples. MAIN OUTCOME MEASURE(S): Qualitative analysis of interview transcripts. INTERVENTION (S): None. RESULT(S): Seven broad themes informed participants' decisions about embryo disposition: family and personal issues, trust, definition of the embryo, prospective responsibility to the embryo, responsibility to society, adequacy of information, and lack of acceptable disposition options. Many wished for alternative options, such as a ceremony at the time of disposal or placement of embryos in the woman's body when pregnancy was unlikely. CONCLUSION(S): Recent debates regarding embryo disposition do not reflect the range of values that infertility patients consider when deciding about frozen embryos. In addition to questions about the embryo's moral status, decision making about embryos is informed by a range of factors in the lives of individuals who created them. These perspectives may have important implications for the content and timing of informed consent, facilitating embryo disposition, and advancing policy debates about the ethics of frozen embryo use.

Authors
Lyerly, AD; Steinhauser, K; Namey, E; Tulsky, JA; Cook-Deegan, R; Sugarman, J; Walmer, D; Faden, R; Wallach, E
MLA Citation
Lyerly, AD, Steinhauser, K, Namey, E, Tulsky, JA, Cook-Deegan, R, Sugarman, J, Walmer, D, Faden, R, and Wallach, E. "Factors that affect infertility patients' decisions about disposition of frozen embryos." Fertil Steril 85.6 (June 2006): 1623-1630.
PMID
16678178
Source
pubmed
Published In
Fertility and Sterility
Volume
85
Issue
6
Publish Date
2006
Start Page
1623
End Page
1630
DOI
10.1016/j.fertnstert.2005.11.056

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

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 caregivers of deceased hospice patients who had undergone transfer. SETTING: A university-affiliated community hospice provider. SUBJECTS: Caregivers of deceased hospice patients who transferred to an acute care hospital, a freestanding inpatient hospice facility, or a nursing home while enrolled in hospice and died between January 2003 and February 2004. MEASUREMENTS: A semistructured interview protocol was developed and used for all interviews. Interviews were coded for reasons for transfer, preferences for site of care and death, and experience upon transfer using a grounded theory approach. RESULTS: Patients transferred because of an acute medical event, an uncontrolled symptom, imminent death, or inability to provide needed care safely at home. Although all caregivers expressed a strong preference for care at home, other concerns such as pain and symptom control, safety, and quality and quantity of life became more important with time. We found significant variation in specific preferences regarding care and site of death. Satisfaction with care at the transfer facilities was determined by clarifying goals of care, following treatment preferences, providing personalized care, and the patient's environment. CONCLUSIONS: Hospice patients usually transfer to facilities to accomplish goals consistent with good end-of-life care. We can improve their experience by treating patients and their caregivers as unique individuals, exploring and respecting treatment preferences, and creating a pleasant physical environment.

Authors
Evans, WG; Cutson, TM; Steinhauser, KE; Tulsky, JA
MLA Citation
Evans, WG, Cutson, TM, Steinhauser, KE, and Tulsky, JA. "Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities." J Palliat Med 9.1 (February 2006): 100-110.
PMID
16430350
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
9
Issue
1
Publish Date
2006
Start Page
100
End Page
110
DOI
10.1089/jpm.2006.9.100

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

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 serious illness. A practical, evidence-based approach to discussing spiritual concerns in a scope suitable to a physician-patient relationship may improve the quality of the clinical encounter. METHODS: Analysis of the construct of being "at peace" using a sample of patients with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease. Descriptive statistics were used to compare response distributions among patient subgroups. Construct validity of the concept of being "at peace" was evaluated by examining Spearman rank correlations between the item and existing spirituality and quality-of-life subscales. RESULTS: Variation in patient responses was not explained by demographic categories or diagnosis, indicating broad applicability across patients. Construct validity showed that feeling at peace was strongly correlated with emotional and spiritual well-being. It was equally correlated with faith and purpose subscales, indicating applicability to traditional and nontraditional definitions of spirituality. CONCLUSIONS: Asking patients about the extent to which they are at peace offers a brief gateway to assessing spiritual concerns. Although these issues may be heightened at the end of life, research suggests they influence medical decision making throughout a lifetime of care.

Authors
Steinhauser, KE; Voils, CI; Clipp, EC; Bosworth, HB; Christakis, NA; Tulsky, JA
MLA Citation
Steinhauser, KE, Voils, CI, Clipp, EC, Bosworth, HB, Christakis, NA, and Tulsky, JA. ""Are you at peace?": one item to probe spiritual concerns at the end of life." Arch Intern Med 166.1 (January 9, 2006): 101-105.
PMID
16401817
Source
pubmed
Published In
Archives of internal medicine
Volume
166
Issue
1
Publish Date
2006
Start Page
101
End Page
105
DOI
10.1001/archinte.166.1.101

Measuring end-of-life care outcomes prospectively

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, the role of proxy and family response, measurement sensitivity to change, the role of theory in guiding measurement efforts, evaluating relationships between domains of end-of-life experience, and measurement of cultural comprehensiveness. The state of the sciences calls for future research to (1) conduct longitudinal studies to capture transitions in end-of-life trajectories; (2) evaluate the quality of proxy reporting as it varies by rater relationship, domain, and over time; (3) use state-of-the art psychometric and longitudinal techniques to validate measures and to assess sensitivity to change; (4) develop further and test conceptual models of the experience of dying; (5) study the inter-relatedness of multiple dimensions of end-of-life trajectories; (6) compile updated information evaluating available measurement tools; and (7) conduct population-based research with attention to ethnic and age diversity. © Mary Ann Liebert, Inc.

Authors
Steinhauser, KE
MLA Citation
Steinhauser, KE. "Measuring end-of-life care outcomes prospectively." December 1, 2005.
Source
scopus
Published In
Journal of Palliative Medicine
Volume
8
Issue
SUPPL. 1
Publish Date
2005

Measuring end-of-life care outcomes prospectively.

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, the role of proxy and family response, measurement sensitivity to change, the role of theory in guiding measurement efforts, evaluating relationships between domains of end-of-life experience, and measurement of cultural comprehensiveness. The state of the sciences calls for future research to (1) conduct longitudinal studies to capture transitions in end-of-life trajectories; (2) evaluate the quality of proxy reporting as it varies by rater relationship, domain, and over time; (3) use state-of-the art psychometric and longitudinal techniques to validate measures and to assess sensitivity to change; (4) develop further and test conceptual models of the experience of dying; (5) study the inter-relatedness of multiple dimensions of end-of-life trajectories; (6) compile updated information evaluating available measurement tools; and (7) conduct population- based research with attention to ethnic and age diversity.

Authors
Steinhauser, KE
MLA Citation
Steinhauser, KE. "Measuring end-of-life care outcomes prospectively." J Palliat Med 8 Suppl 1 (2005): S30-S41. (Review)
PMID
16499466
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
8 Suppl 1
Publish Date
2005
Start Page
S30
End Page
S41
DOI
10.1089/jpm.2005.8.s-30

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

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, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction < or = 20%, chronic obstructive pulmonary disease with FEV1 < or = 1.0 1, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales. RESULTS: QUAL-E analyses confirmed a four-domain structure (25 items): life completion (alpha = 0.80), symptoms impact (alpha = 0.87), relationship with health care provider (alpha = 0.71), and preparation for end of life (alpha = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test-retest reliability assessment showed stable scores over a 1-week period. SIGNIFICANCE OF RESULTS: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.

Authors
Steinhauser, KE; Clipp, EC; Bosworth, HB; McNeilly, M; Christakis, NA; Voils, CI; Tulsky, JA
MLA Citation
Steinhauser, KE, Clipp, EC, Bosworth, HB, McNeilly, M, Christakis, NA, Voils, CI, and Tulsky, JA. "Measuring quality of life at the end of life: validation of the QUAL-E." Palliat Support Care 2.1 (March 2004): 3-14.
PMID
16594230
Source
pubmed
Published In
Palliative & Supportive Care
Volume
2
Issue
1
Publish Date
2004
Start Page
3
End Page
14

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

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 than capturing the full range of psychosocial concerns. The purpose of this study was to gather descriptions of the components of QOL as understood by patients living with CHF. Focus groups were conducted with patients with known CHF, New York Heart Association (NYHA) class I-IV, and left ventricular fraction of <40%. Focus groups were audiotaped, transcribed, and reviewed for common and recurrent themes using the methods of constant comparisons. We conducted three focus groups (n = 15) stratified by NYHA stage with male patients ranging in age from 47-82 years of age. Five patients were classified with NYHA stage III/IV and ten with NYHA stage I/II. Thirty attributes of QOL were identified which fell into five broad domains: symptoms, role loss, affective response, coping, and social support. Expectedly, patients reported the importance of physical symptoms; however, participants also identified concern for family, the uncertainty of prognosis, and cognitive function as dimensions of QOL. Changes in patients' lives attributed to CHF were not always considered deficiencies; rather, methods of coping with CHF were identified as important attributes representing possible opportunities for personal growth. Clinicians must understand the full range of concerns affecting the QOL of their older patients with CHF. The findings suggest that psychosocial aspects and patient uncertainty about their prognosis are important components of QOL among CHF patients.

Authors
Bosworth, HB; Steinhauser, KE; Orr, M; Lindquist, JH; Grambow, SC; Oddone, EZ
MLA Citation
Bosworth, HB, Steinhauser, KE, Orr, M, Lindquist, JH, Grambow, SC, and Oddone, EZ. "Congestive heart failure patients' perceptions of quality of life: the integration of physical and psychosocial factors." Aging Ment Health 8.1 (January 2004): 83-91.
PMID
14690872
Source
pubmed
Published In
Aging & Mental Health
Volume
8
Issue
1
Publish Date
2004
Start Page
83
End Page
91
DOI
10.1080/13607860310001613374

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

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 items measured on a five-point Likert scale covered six domains. We administered the instrument to equal numbers of Veteran's Administration (VA) and university medical center outpatients with advanced serious illness. We assessed psychometric properties using factor analysis. RESULTS: Two hundred patients completed the instrument (response rate, 85%). Diagnoses included cancer (64%), congenital heart failure (CHF) (19.5%), end-stage renal disease (ESRD) (10%) and chronic obstructive pulmonary disease (COPD) (6.5%). Seventy-four percent were male, 64% were caucasian, and 34% African American. Item reduction and factor analysis yielded a final instrument with 24 items in 5 distinct domains (overall Cronbach a = 0.83). The first factor (6 items; a = 0.84) measured a sense of completion, particularly through contributions to others. The second factor (7 items; alpha = 0.77) measured relations with the health care system. The third factor (6 items; alpha = 0.77) measured preparation. The fourth factor (4 items; alpha = 0.77) measured symptom severity, and the final factor (2 items; alpha = 0.60) measured affective social support. CONCLUSIONS: We have developed a new instrument to measure the quality of life at the end of life that assesses empirically derived domains that are of demonstrated importance to dying patients, is acceptable to a seriously ill population, and exhibits excellent psychometric properties. Some items related to completion and preparation represent particularly new contributions to quality-of-life measurement.

Authors
Steinhauser, KE; Bosworth, HB; Clipp, EC; McNeilly, M; Christakis, NA; Parker, J; Tulsky, JA
MLA Citation
Steinhauser, KE, Bosworth, HB, Clipp, EC, McNeilly, M, Christakis, NA, Parker, J, and Tulsky, JA. "Initial assessment of a new instrument to measure quality of life at the end of life." J Palliat Med 5.6 (December 2002): 829-841.
PMID
12685529
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
5
Issue
6
Publish Date
2002
Start Page
829
End Page
841
DOI
10.1089/10966210260499014

Evolution in measuring the quality of dying.

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, compassionate care to dying patients and their families, there must be a valid means of assessing the quality of those experiences and interventions to improve care. The purpose of this paper is to evaluate quality-of-life instruments currently used to assess the experiences of dying patients, and to offer a design for a next generation instrument to measure quality at the end of life. DESIGN: Sources were attained through a review of the quality of life, quality of dying, and end-of-life care literatures. The terms quality of life, quality of care, terminal care, hospice, assessment, and measurement were used singly and in combination in the MEDLINE database from 1966 to 2001. DISCUSSION: An appropriate clinical quality of dying instrument must be derived from the perspectives of end-of-life care participants and include the multiple domains of experience important to patients and families. Because dying patients are often too ill to communicate, nonresponse bias is a major problem in this population. Researchers must identify additional objective and subjective measures that clearly reflect, correspond well (or predictably) with, and serve as alternatives to patients' self-ratings. Additionally, an appropriate assessment tool must accommodate individual definitions of the quality of dying and demonstrate sensitivity to change over time.

Authors
Steinhauser, KE; Clipp, EC; Tulsky, JA
MLA Citation
Steinhauser, KE, Clipp, EC, and Tulsky, JA. "Evolution in measuring the quality of dying." J Palliat Med 5.3 (June 2002): 407-414. (Review)
PMID
12133245
Source
pubmed
Published In
Journal of Palliative Medicine
Volume
5
Issue
3
Publish Date
2002
Start Page
407
End Page
414
DOI
10.1089/109662102320135298

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

Authors
Steinhauser, KE; Christakis, NA; Clipp, EC; McNeilly, M; Grambow, S; Parker, J; Tulsky, JA
MLA Citation
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, Grambow, S, Parker, J, and Tulsky, JA. "Preparing for the end of life: Preferences of patients, families, physicians, and other care providers." GERONTOLOGIST 41 (October 2001): 299-300.
Source
wos-lite
Published In
The Gerontologist
Volume
41
Publish Date
2001
Start Page
299
End Page
300

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

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 quantitative national survey. Respondents from all groups showed consensus on the importance of naming someone to make decisions, knowing what to expect about one's physical condition, having financial affairs in order, having treatment preferences in writing, and knowing that one's physician is comfortable talking about death and dying. Patients were more likely than physicians to want to plan funerals and know the timing of death and less likely than all other groups to want to discuss personal fears. Participants in care of dying patients agree overwhelmingly with the importance of preparation. However, significant barriers to preparation impede it from being a common part of clinical encounters. Further research and training are needed to ensure that the desire for greater preparation is translated into improved action toward preparation in medical practice.

Authors
Steinhauser, KE; Christakis, NA; Clipp, EC; McNeilly, M; Grambow, S; Parker, J; Tulsky, JA
MLA Citation
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, Grambow, S, Parker, J, and Tulsky, JA. "Preparing for the end of life: preferences of patients, families, physicians, and other care providers." J Pain Symptom Manage 22.3 (September 2001): 727-737.
PMID
11532586
Source
pubmed
Published In
Journal of Pain and Symptom Management
Volume
22
Issue
3
Publish Date
2001
Start Page
727
End Page
737

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

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. OBJECTIVE: To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. DESIGN AND SETTING: Cross-sectional, stratified random national survey conducted in March-August 1999. PARTICIPANTS: Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429). MAIN OUTCOME MEASURES: Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. RESULTS: Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. CONCLUSIONS: Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. JAMA. 2000;284:2476-2482.

Authors
Steinhauser, KE; Christakis, NA; Clipp, EC; McNeilly, M; McIntyre, L; Tulsky, JA
MLA Citation
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, McIntyre, L, and Tulsky, JA. "Factors considered important at the end of life by patients, family, physicians, and other care providers." JAMA 284.19 (November 15, 2000): 2476-2482.
PMID
11074777
Source
pubmed
Published In
JAMA : the journal of the American Medical Association
Volume
284
Issue
19
Publish Date
2000
Start Page
2476
End Page
2482

In search of a good death: Attitudes of patients, family members and health care professionals.

Authors
Steinhauser, KE; Clipp, EC; Christakis, N; McNeilly, M; McIntyre, L; Tulsky, JA
MLA Citation
Steinhauser, KE, Clipp, EC, Christakis, N, McNeilly, M, McIntyre, L, and Tulsky, JA. "In search of a good death: Attitudes of patients, family members and health care professionals." JOURNAL OF GENERAL INTERNAL MEDICINE 15 (October 2000): 5-5.
Source
wos-lite
Published In
Journal of General Internal Medicine
Volume
15
Publish Date
2000
Start Page
5
End Page
5
DOI
10.1046/j.1525-1497.2000.15200-19.x

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

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, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.

Authors
Steinhauser, KE; Clipp, EC; McNeilly, M; Christakis, NA; McIntyre, LM; Tulsky, JA
MLA Citation
Steinhauser, KE, Clipp, EC, McNeilly, M, Christakis, NA, McIntyre, LM, and Tulsky, JA. "In search of a good death: observations of patients, families, and providers." Ann Intern Med 132.10 (May 16, 2000): 825-832.
PMID
10819707
Source
pubmed
Published In
Annals of internal medicine
Volume
132
Issue
10
Publish Date
2000
Start Page
825
End Page
832

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

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. This paper revisits the debate over the changing role of volunteers using such a longitudinal data source. Over time, as the patient population grew, aggregate levels of volunteers and professional staff increased. However, the ratios of professional staff and volunteers to patients reveal that regardless of certification status, hospices retained more professional staff per patient and fewer volunteers per patient over time. These data suggest hospices, particularly certified organizations, have transitioned from voluntary organizations to professionally staffed organizations with a strong volunteer component. The most important issue for future research is whether the observed changes have affected the quality of hospice care.

Authors
Steinhauser, KE; Maddox, GL; Person, JL; Tulsky, JA
MLA Citation
Steinhauser, KE, Maddox, GL, Person, JL, and Tulsky, JA. "The evolution of volunteerism and professional staff within hospice care in North Carolina." Hosp J 15.1 (2000): 35-51.
PMID
11033658
Source
pubmed
Published In
Journal of Pain and Palliative Care Pharmacotherapy
Volume
15
Issue
1
Publish Date
2000
Start Page
35
End Page
51

Dynamics of functional impairment in late adulthood

The inconclusive debate about Fries' theory of "natural death and the compression of morbidity" has diverted attention from two keys issues-the modifiability and related dynamics of functional impairment in late adulthood. Evidence is presented from a large (N = 11,000) panel of adults aged initially 58-63 over the period of a decade which documents substantial modification of functional status. Further, patterned changes in functional status are related to the dynamics of income, historically a major determinant of functional status, and independently to educational attainment. The dynamics of functional status, of income, and of their relationship are explored using discrete time hazard models in an event history analysis incorporating time-varying income and functional status indicators. The importance of income and of education as positive, independent predictors of functional status and patterned changes of functional status is confirmed. The implications of this finding for differentiating distal (e.g. education) and proximate (e.g. income) measures of socioeconomic status and for assessing competing theories of social causation and social selection are discussed. © 1994.

Authors
Maddox, GL; Clark, DO; Steinhauser, K
MLA Citation
Maddox, GL, Clark, DO, and Steinhauser, K. "Dynamics of functional impairment in late adulthood." Social Science and Medicine 38.7 (1994): 925-936.
PMID
8202741
Source
scival
Published In
Social Science & Medicine
Volume
38
Issue
7
Publish Date
1994
Start Page
925
End Page
936
DOI
10.1016/0277-9536(94)90425-1

Race, aging, and functional health

Authors
Clark, DO; Maddox, GL; Steinhauser, K
MLA Citation
Clark, DO, Maddox, GL, and Steinhauser, K. "Race, aging, and functional health." Journal of Aging and Health 5.4 (1993): 536-553.
Source
scival
Published In
Journal of Aging and Health
Volume
5
Issue
4
Publish Date
1993
Start Page
536
End Page
553
DOI
10.1177/089826439300500407
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