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Biomedical subjects

Ira Byock

Publications and source records attributed to Ira Byock.

At least 19 recordsLinked to original sources
PubMed2006

Promoting excellence in end-of-life care: a report on innovative models of palliative care.

BACKGROUND: Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. OBJECTIVE: To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. DESIGN: The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. SETTINGS AND SUBJECTS: The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. RESULTS: Hosting or adopting institutions sustained or expanded twenty of the 22 models, and feedback from all stakeholders was positive. Project sites developed and utilized new palliative care services and addressed quality through implementation of new standards and clinical protocols. Costs of care, where they could be assessed, were unaffected or decreased for project patients versus historical or concurrent controls. CONCLUSIONS: The 22 Promoting Excellence in End-of Life Care projects demonstrated that by individualizing patient and family assessment, effectively employing existing resources and aligning services with specific patient and family needs, it is possible to expand access to palliative services and improve quality of care in ways that are financially feasible and acceptable to patients, families, clinicians, administrators, and payers.

Feasibility Studies↗
PubMed2006

Peer-professional workgroups in palliative care: a strategy for advancing professional discourse and practice.

BACKGROUND: As part of a comprehensive national effort to improve care at the end of life, the Promoting Excellence in End-of-Life Care program of The Robert Wood Johnson Foundation convened "national peer-professional workgroups" of recognized authorities or leaders to advance palliative aspects of practice in their respective specialties or fields. OBJECTIVE: The conveners' goals were to establish research and practice agendas to integrate palliative care within selected fields and health care settings, and to expand delivery of palliative care to special patient populations that have been underserved by palliative care. We hypothesized that leading professionals within specific fields, chartered to achieve clear goals, and then provided with sufficient administrative and logistical support, could develop recommendations for expanding access to, quality of and financing for palliative care within their disciplines. DESIGN: Staff at the national program office of Promoting Excellence in End-of-Life Care convened eight disease-based, specialty-based or issue-based workgroups (the selected workgroup topics were amyotrophic lateral sclerosis, cost accounting, critical care, end-stage renal disease, human immunodeficiency virus/acquired immune deficiency syndrome [HIV/AIDS] disease, Huntington's disease, pediatric care, and surgical palliative care). The national program office implemented a small group process design in convening the groups, and provided coordination, oversight and administrative support, along with funds to support meetings (telephone and in-person). A workgroup "charter" guided groups in determining the scope of efforts and set specific, time-limited goals. From the outset, the workgroups developed plans for dissemination of workgroup recommendations to defined stakeholder audiences, including health care providers, policy-makers, payers, researchers, funders, educators, professional organizations and patient advocacy groups. SETTING AND SUBJECTS: Groups averaged 25 members and met for an average of 24 months. Promoting Excellence leadership chose workgroup topic areas that addressed patient populations underserved for palliative care, and corresponding professional specialties with demonstrated interest and readiness to improve education, evidence base, and professional expertise in palliative aspects of care. RESULTS: Each workgroup was highly productive and advanced changes in respective fields through developing and disseminating recommendations to their respective fields regarding practice, education, clinical and health service research and policy. Beyond their chartered responsibilities, workgroups also developed educational programs and curricula and a wide array of resources. The workgroups also authored articles for publication, intended to stimulate professional discourse and influence clinical norms and culture. CONCLUSIONS: The national peer-professional workgroup model exceeded original expectations and produced well-considered Recommendations to the Field as well as a body of resources for professionals in expanding access to and quality of palliative care. Results of this experimental venture in professional change suggest that the workgroup model may be a useful, cost-effective, rapid-change strategy for quality improvement in other areas of professional practice and service delivery.

Foundations↗
PubMed2006

Where do we go from here? A palliative care perspective.

Key principles of palliative care shed light on future opportunities and challenges for improving patient care and family support within critical care. Interdisciplinary team approaches to patient comfort and family support, coordination and continuity of care, communication as an ethical and therapeutic modality, assistance with emotional, social and spiritual experience, including issues of life completion, bereavement support to families and attention to staff well-being are all foci for future clinical and programmatic development and research. By collaborating to care well for the critically ill or injured patients and extend support for their families, the disciplines of critical care and palliative care can complete one another.

Bereavement↗
PubMed2006

Improving palliative care in intensive care units: identifying strategies and interventions that work.

The disciplines of critical care and palliative care may initially seem to be polar opposites, yet they share fundamental features. Both focus on the sickest patients in the healthcare system. Each discipline's primary goal-extending life for critical care and comfort and quality of life for palliative care-represents an important secondary goal for the other. A tremendous body of work in the last decade has laid the foundation for improving palliative care in intensive care units of the future. Pioneering projects have demonstrated the feasibility and acceptance of integrating palliative aspects of care within critical care settings and practice. This article introduces this special supplement of Critical Care Medicine, which describes the developments that have occurred moving us toward integration of palliative and critical care, and lays the foundation for the articles published in this supplement.

Critical Care↗
PubMed2006

Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup.

For critically ill patients and their loved ones, high-quality health care includes the provision of excellent palliative care. To achieve this goal, the healthcare system needs to identify, measure, and report specific targets for quality palliative care for critically ill or injured patients. Our objective was to use a consensus process to develop a preliminary set of quality measures to assess palliative care in the critically ill. We built on earlier and ongoing efforts of the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup to propose specific measures of the structure and process of palliative care. We used an informal iterative consensus process to identify and refine a set of candidate quality measures. These candidate measures were developed by reviewing previous literature reviews, supplementing the evidence base with recently published systematic reviews and consensus statements, identifying existing indicators and measures, and adapting indicators from related fields for our objective. Among our primary sources, we identified existing measures from the Voluntary Hospital Association's Transformation of the ICU program and a government-sponsored systematic review performed by RAND Health to identify palliative care quality measures for cancer care. Our consensus group proposes 18 quality measures to assess the quality of palliative care for the critically ill and injured. A total of 14 of the proposed measures assess processes of care at the patient level, and four measures explore structural aspects of critical care delivery. Future research is needed to assess the relationship of these measures to desired health outcomes. Subsequent measure sets should also attempt to include outcome measures, such as patient or surrogate satisfaction, as the field develops the means to rigorously measure such outcomes. The proposed measures are intended to stimulate further discussion, testing, and refinement for quality of care measurement and enhancement.

Continuity of Patient Care↗
PubMed2005

Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy.

Previously we had speculated that the patient-proxy relationship existed on a contractual to covenantal continuum. In order to assess this hypothesis, and to better understand the moral obligations of the patient-proxy relationship, we surveyed 50 patient-proxy pairs as well as 52 individuals who had acted as proxies for someone who had died. Using structured vignettes representative of three distinct disease trajectories (cancer, acute stroke, and congestive heart failure), we assessed whether respondents believed that proxies should follow explicit instructions regarding life-sustaining therapy and act contractually or whether more discretionary or covenantal judgments were ethically permissible. Additional variables included the valence of initial patient instructions--for example, "to do nothing" or "to do everything"--as well as the quality of information available to the proxy. Responses were graded on a contractual to covenantal continuum using a modified Likert scale employing a prospectively scored survey instrument. Our data indicate that the patient-proxy relationship exists on a contractual to covenantal continuum and that variables such as disease trajectory, the clarity of prognosis, instructional valence, and the quality of patient instructions result in statistically significant differences in response. The use of interpretative or covenantal judgment was desired by patients and proxies when the prognosis was grim, even if initial instructions were to pursue more aggressive care. Nonetheless, there was a valence effect: patients and proxies intended that negative instructions to be left alone be heeded. These data suggest that the delegation of patient self-determination is morally complex. Advance care planning should take into account both the exercise of autonomy and the interpretative burdens assumed by the proxy. Patients and proxies think inductively and contextually. Neither group viewed deviation from patient instructions as a violation of the principal's autonomy. Instead of adhering to narrow notions of patient self-determination, respondents made nuanced and contextually informed moral judgments. These findings have implications for patient education as well as the legal norms that guide advance care planning.

Advance Care Planning↗
PubMed2005

Promoting excellence in end-of-life care in ALS.

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.

Advance Care Planning↗
PubMed2005

Evaluation of the Missoula-VITAS Quality of Life Index--revised: research tool or clinical tool?

BACKGROUND: Quality of life (QOL) is a central outcome measure in caring for seriously ill patients. The Missoula-VITAS Quality of Life Index (MVQOLI) is a 25-item patient-centered index that weights each of five QOL dimensions (symptoms, function, interpersonal, wellbeing, transcendence) by its importance to the respondent. The measure has been used to assess QOL for hospice patients, and has been found to be somewhat complex to use and analyze. OBJECTIVE: This study aimed to simplify the measure, and evaluate the reliability and validity of a revised version as either a research or clinical tool (i.e., "psychometric" versus "clinimetric"). DESIGN: Two data collection efforts are described. The psychometric study collected QOL data from 175 patients at baseline, 3-5 days, and 21 days later. The implementation study evaluated the feasibility and utility of the MVQOLI-R during over six weeks of use. SETTING/SUBJECTS: End-stage renal patients on dialysis, hospice, or long-term care patients participated in the psychometric study. The implementation study was done in hospice, home health, and palliative care settings. MEASUREMENTS: The MVQOLI-R and the Memorial Symptom Assessment Scale. RESULTS: The psychometric and implementation studies suggest that the MVQOLI-R performs well as a clinical tool but is not powerful as an outcome research instrument. The MVQOLI-R has the heterogeneous structure of clinimetric tools, and demonstrated both relevance and responsiveness. Additionally, in a clinical setting the MVQOLI-R was useful therapeutically for stimulating communication about the psychosocial and spiritual issues important to the tasks of life completion and life closure. CONCLUSIONS: The MVQOLI-R has clinical utility as a patient QOL assessment tool and may have therapeutic utility as a tool for fostering discussion among patients and their clinicians, as well as for helping patients identify sources of suffering and opportunities during this time in their lives.

Aged↗
PubMed2003

Hospice benefits and phase I cancer trials.

Medicare denies hospice coverage to patients with terminal illnesses who enroll as participants in phase I studies, which assess the toxicity and dosing of potential treatments for incurable diseases. Federal regulations require patients to forgo curative therapies, and they interpret phase I agents as treatment for the terminal condition for which hospice care was elected. Thus, by enrolling as a participant in a phase I trial, a patient otherwise eligible for hospice is rendered ineligible. Private insurers have similar provisions for children and adults younger than 65 years of age. Such exclusions are not defensible on ethical or clinical grounds. Policymakers, insurers, and institutional review boards all have a role in resolving this problem.

Clinical Trials, Phase I as Topic↗
PubMed2002

A measure of the quality of dying and death. Initial validation using after-death interviews with family members.

A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.

Aged↗
PubMed2002

Advocacy and activism: missing pieces in the quest to improve end-of-life care.

Increasing attention has focused on end-of-life care and has identified significant deficiencies in access and quality of care. When problems with quality or access to care have been identified for other diseases or conditions, the public has often responded vigorously. This paper describes two kinds of public action that have been effective in improving health care in other areas: advocacy and activism. However, a public response to improve end-of-life care has been muted. We discuss some of the reasons for this lack of response, and propose ways in which providers and funding agencies can work with patients and their families to improve end-of-life care.

Community Participation↗