Despite the universality of dying, research has not focused on developing conceptual models and m... more Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care.
A reliable and valid measure of the quality of the dying experience would help clinicians and res... more 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. 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. Nonenrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths ( n ϭ 45) and decedents under age 18 ( n ϭ 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 Ͻ 0.01), death in the location the patient desired ( P Ͻ 0.01), lower symptom burden ( P Ͻ 0.001), and better ratings of symptom treatment ( P Ͻ 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 Ͻ 0.01), compliance with treatment preferences ( P Ͻ 0.001), and family satisfaction regarding communication with the health care team ( P Ͻ 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score ( P Ͻ 0.001). The QODD total score demonstrated good cross-sectional validity.
American journal of orthopedics (Belle Mead, N.J.)
This study sought to determine whether a grand rounds presentation could change resident practice... more This study sought to determine whether a grand rounds presentation could change resident practice. A 6-month review of all hip fracture patients 65 years and older at a single academic medical center was performed. The rate of addressing advanced directives and code status as documented in the medical record was noted. A grand rounds presentation was then given to the orthopedic department, and the medical records of hip fracture patients for the 12 months following the grand rounds were reviewed. In the 6 months prior to the grand rounds, orthopedic residents did not document code status or advanced directives in any of their admission or consultation notes. Following the grand rounds, orthopedic residents addressed advanced directives, code status, and contact person in 76% of their admission notes. There was a marked difference in the rate of documentation among residents who attended the grand rounds (88%), compared with residents who did not attend grand rounds (20%). Based on the results of this study, specifically whether residents attended grand rounds, this form of teaching can lead to changes in resident behavior.
Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The ... more Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The Missoula-VITAS Quality of Life index (MVQOLI) has been developed to provide a measure of quality of life that is meaningful to both clinicians and patients. Unique features of the instrument include its focus on the terminal phase of life, the item structure and a scoring system that allows the weighting of each dimension of QOL by the respondent, and the subjective wording of the items that allows respondents to interpret the measured elements according to their own experience. The validity and reliability of the patient-reported survey instrument were tested by administering the 25-item questionnaire to 257 patients in 10 community-based hospices. Participants were incurably ill with predicted survival of six months or less. Exclusion criteria included inability to communicate, dementia, or psychological symptoms that might be intensified by completing the index. Reliability and validity of the new index were examined using standard statistical and psychometrical analyses. The MVQOLI demonstrated internal consistency (Cronbach's alpha = 0.77). MVQOLI total scores were correlated with scores on the Multidimensional Quality of Life Scale--Cancer 2 and with patient-reported global QOL ratings. MVQOLI scores did not correlate with observer-rated functional status scores indicating divergent validity. The MVQOLI could be completed by patients of varied educational level, age, functional status, and length of time with a terminal illness. The instrument is designed to contribute to the task of planning care by evaluating patient-identified sources of distress, strength and satisfaction, including issues of life closure. This information contributes to crafting highly specific interventions. Further studies are necessary to determine the usefulness of the instrument in measuring outcomes of end-of-life care in nonhospice settings, and for racial and diagnostic groups under-represented in this sample.
Objective: There is a paucity of randomized controlled trials (RCTs) to evaluate models of pallia... more Objective: There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Objective: Patients approaching the end of life not only face challenges to physical well-being b... more 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.
index that weights each of five QOL dimensions (symptoms, function, interpersonal, wellbeing, tra... more 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.
Background: Significant palliative care intervention has focused on physical pain and symptom con... more 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 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.
Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundatio... more 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. 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. 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. 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. 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. 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.
Alleviation of symptoms associated with advanced illness and dying is a fundamental goal and core... more Alleviation of symptoms associated with advanced illness and dying is a fundamental goal and core principle of palliative care. Little research exists regarding hospice programs' practices for prescribing, dispensing, and utilizing medication kits in the home for management of uncontrolled symptoms. We conducted a telephone survey of all 22 agencies in New Hampshire providing home hospice care. The survey inquired about the timing of medication kit ordering and availability, characteristics of prescribers and pharmacies, kit contents, costs, frequency of use, and perceived impact of kits. All programs' kits contained medications to treat pain and dyspnea, 81% for nausea and vomiting, and 76% for seizures. Eighty-six percent of agencies (18/21) reported that a medication within the kits was used in more than 50% of cases. Eighty-six percent reported the kits often averted hospital or emergency department visits. Oral, sublingual, and rectal routes of administration were common as was topical preparations of combination medications. Three programs included parenteral morphine in kits. Kits cost less than $50 for the majority of programs. Hospice programs commonly utilize kits containing prescription medications for the purpose of managing uncontrolled symptoms in the home. There is considerable variation in kit contents and practice. Programs believe that kits diminish emergency department visits and hospitalizations. Research is needed to more fully describe and study the outcomes of these practices.
Despite the universality of dying, research has not focused on developing conceptual models and m... more Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care.
A reliable and valid measure of the quality of the dying experience would help clinicians and res... more 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. 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. Nonenrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths ( n ϭ 45) and decedents under age 18 ( n ϭ 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 Ͻ 0.01), death in the location the patient desired ( P Ͻ 0.01), lower symptom burden ( P Ͻ 0.001), and better ratings of symptom treatment ( P Ͻ 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 Ͻ 0.01), compliance with treatment preferences ( P Ͻ 0.001), and family satisfaction regarding communication with the health care team ( P Ͻ 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score ( P Ͻ 0.001). The QODD total score demonstrated good cross-sectional validity.
American journal of orthopedics (Belle Mead, N.J.)
This study sought to determine whether a grand rounds presentation could change resident practice... more This study sought to determine whether a grand rounds presentation could change resident practice. A 6-month review of all hip fracture patients 65 years and older at a single academic medical center was performed. The rate of addressing advanced directives and code status as documented in the medical record was noted. A grand rounds presentation was then given to the orthopedic department, and the medical records of hip fracture patients for the 12 months following the grand rounds were reviewed. In the 6 months prior to the grand rounds, orthopedic residents did not document code status or advanced directives in any of their admission or consultation notes. Following the grand rounds, orthopedic residents addressed advanced directives, code status, and contact person in 76% of their admission notes. There was a marked difference in the rate of documentation among residents who attended the grand rounds (88%), compared with residents who did not attend grand rounds (20%). Based on the results of this study, specifically whether residents attended grand rounds, this form of teaching can lead to changes in resident behavior.
Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The ... more Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The Missoula-VITAS Quality of Life index (MVQOLI) has been developed to provide a measure of quality of life that is meaningful to both clinicians and patients. Unique features of the instrument include its focus on the terminal phase of life, the item structure and a scoring system that allows the weighting of each dimension of QOL by the respondent, and the subjective wording of the items that allows respondents to interpret the measured elements according to their own experience. The validity and reliability of the patient-reported survey instrument were tested by administering the 25-item questionnaire to 257 patients in 10 community-based hospices. Participants were incurably ill with predicted survival of six months or less. Exclusion criteria included inability to communicate, dementia, or psychological symptoms that might be intensified by completing the index. Reliability and validity of the new index were examined using standard statistical and psychometrical analyses. The MVQOLI demonstrated internal consistency (Cronbach's alpha = 0.77). MVQOLI total scores were correlated with scores on the Multidimensional Quality of Life Scale--Cancer 2 and with patient-reported global QOL ratings. MVQOLI scores did not correlate with observer-rated functional status scores indicating divergent validity. The MVQOLI could be completed by patients of varied educational level, age, functional status, and length of time with a terminal illness. The instrument is designed to contribute to the task of planning care by evaluating patient-identified sources of distress, strength and satisfaction, including issues of life closure. This information contributes to crafting highly specific interventions. Further studies are necessary to determine the usefulness of the instrument in measuring outcomes of end-of-life care in nonhospice settings, and for racial and diagnostic groups under-represented in this sample.
Objective: There is a paucity of randomized controlled trials (RCTs) to evaluate models of pallia... more Objective: There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Objective: Patients approaching the end of life not only face challenges to physical well-being b... more 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.
index that weights each of five QOL dimensions (symptoms, function, interpersonal, wellbeing, tra... more 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.
Background: Significant palliative care intervention has focused on physical pain and symptom con... more 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 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.
Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundatio... more 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. 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. 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. 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. 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. 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.
Alleviation of symptoms associated with advanced illness and dying is a fundamental goal and core... more Alleviation of symptoms associated with advanced illness and dying is a fundamental goal and core principle of palliative care. Little research exists regarding hospice programs' practices for prescribing, dispensing, and utilizing medication kits in the home for management of uncontrolled symptoms. We conducted a telephone survey of all 22 agencies in New Hampshire providing home hospice care. The survey inquired about the timing of medication kit ordering and availability, characteristics of prescribers and pharmacies, kit contents, costs, frequency of use, and perceived impact of kits. All programs' kits contained medications to treat pain and dyspnea, 81% for nausea and vomiting, and 76% for seizures. Eighty-six percent of agencies (18/21) reported that a medication within the kits was used in more than 50% of cases. Eighty-six percent reported the kits often averted hospital or emergency department visits. Oral, sublingual, and rectal routes of administration were common as was topical preparations of combination medications. Three programs included parenteral morphine in kits. Kits cost less than $50 for the majority of programs. Hospice programs commonly utilize kits containing prescription medications for the purpose of managing uncontrolled symptoms in the home. There is considerable variation in kit contents and practice. Programs believe that kits diminish emergency department visits and hospitalizations. Research is needed to more fully describe and study the outcomes of these practices.
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Papers by Ira Byock