PubMed Health⌕ Search

Biomedical subjects

Joan Teno

Publications and source records attributed to Joan Teno.

12 recordsLinked to original sources
PubMed2006

How should nations measure the quality of end-of-life care for older adults? Recommendations for an international minimum data set.

Nations face numerous challenges in providing high-quality end-of-life care for their citizens, and an aging population that has a prolonged trajectory of decline and substantial needs for care magnifies these challenges. As nations begin to address these challenges, it will be essential to determine whether their responses are effective, but current national data collection efforts are sporadic, and data are often collected only for patients who receive care through certain funding programs or provider organizations or in selected sites of care. Therefore, governments do not know whether their citizens are receiving adequate care, whether current programs are improving care, or how their outcomes compare with those of other countries. This article describes the importance of developing national minimum data sets that can be used to assess the quality of end-of-life care that older adults receive and recommends key variables that these data sets should include.

Aged↗
PubMed2005

Family evaluation of hospice care: results from voluntary submission of data via website.

The Family Evaluation of Hospice Care (FEHC) survey is a 61-item questionnaire that surveys family members about care provided to the decedent by the hospice. Hospices submit their data to the National Hospice and Palliative Care Organization (NHPCO), where results are tabulated. For the first two quarters of 2004, a total of 29,292 surveys were tabulated. On average, respondents rated their overall satisfaction with care as 47.1 on a 50-point composite scale of five measures of satisfaction. Opportunities for improvement were identified for attending to family needs for support (18.2% of those surveyed reported at least one unmet need), attending to family needs for communication (10-29%), and coordination of care (22.1%). Surrogate reporting of unmet needs for pain, dyspnea, or emotional support ranged from 5.3% to 9.8%. The FEHC is a useful tool for measuring hospice performance and identifies a number of opportunities for improvement.

Consumer Behavior↗
PubMed2005

Family perspectives on end-of-life care experiences in nursing homes.

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.

Aged↗
PubMed2005

Making difficult decisions about hospice enrollment: what do patients and families want to know?

OBJECTIVES: To define patients' and families' priorities for information about hospice. DESIGN: Cross-sectional interview. SETTING: Urban, not-for-profit, Medicare-certified hospice. PARTICIPANTS: Patients and families recruited from consecutive hospice information visits. MEASUREMENTS: Understanding of hospice, assessment of the relative importance of eight categories of information (by direct rating and ranking tasks), and nurse observation of shared decision making between patient and family (5-point scale). RESULTS: Interviews were conducted with 237 patients and families at a hospice information visit. Forty percent (n=94) said that they knew anything about hospice. Most often, family members made the enrollment decision (n=132, 57%). Of the eight categories of information, patients and families placed the greatest importance on visit frequency (n=143, 60%), payment for hospice (n=140, 59%), and the practical help that hospice provides (n=123, 52%). Principal component factor analysis reduced the categories to three distinct factors reflecting concerns related to impending death, practical support, and changes from established patterns of care. CONCLUSION: Most patients and families who are referred for a hospice information visit know little about hospice and have substantial information needs. Referring physicians and hospice teams may be able to better support hospice enrollment decisions by anticipating common priorities for information.

Adult↗
PubMed2005

Physicians "missing in action": family perspectives on physician and staffing problems in end-of-life care in the nursing home.

OBJECTIVES: To understand the roles of physicians and staff in nursing homes in relation to end-of-life care through narrative interviews with family members close to a decedent. DESIGN: Qualitative follow-up interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. SETTING: Brown University interviewers conducted telephone interviews with participants throughout the United States. PARTICIPANTS: The 54 participants agreed to a follow-up qualitative interview and were family members or close to the decedent. MEASUREMENTS: A five-member, multidisciplinary team to identify overarching themes taped, transcribed, and then coded interviews. RESULTS: Respondents report that healthcare professionals often insufficiently address the needs of dying patients in nursing homes and that "missing in action" physicians and insufficient staffing create extra burdens on dying nursing home residents and their families. CONCLUSION: Sustained efforts to increase the presence of physicians and improve staffing in nursing homes are suggested to improve end-of-life care for dying residents in nursing homes.

Aged↗
PubMed2004

Consensus statement: Palliative and supportive care in advanced heart failure.

BACKGROUND: A consensus conference was convened to define the current state and important gaps in knowledge and needed research on "Palliative and Supportive Care in Advanced Heart Failure." EVIDENCE: Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews. CONCLUSIONS: The conference identified gaps in current knowledge, practice, and research relating to prognostication, symptom management, and supportive care for advanced heart failure (HF). Specific conclusions include: (1) although supportive care should be integrated throughout treatment of patients with advanced HF, data are needed to understand how to best decrease physical and psychosocial burdens of advanced HF and to meet patient and family needs; (2) prognostication in advanced HF is difficult and data are needed to understand which patients will benefit from which interventions and how best to counsel patients with advanced HF; (3) research is needed to identify which interventions improve quality of life and best achieve the outcomes desired by patients and family members; (4) care should be coordinated between sites of care, and barriers to evidence-based practice must be addressed programmatically; and (5) more research is needed to identify the content and technique of communicating prognosis and treatment options with patients with advanced HF; physicians caring for patients with advanced HF must develop skills to better integrate the patient's preferences into the goals of care.

Counseling↗
PubMed2004

Measuring hospice care: the National Hospice and Palliative Care Organization National Hospice Data Set.

Hospice has seen rapid growth in recent years, but there is a lack of consistency among hospices when it comes to compliance with standards of care. Consequently, hospices vary in performance and in services they provide. With state hospice organizations, the NHPCO developed a National Data Set (NDS) intended to understand demographics, practices, and outcomes; illustrate industry effectiveness; facilitate communication of industry legislative needs; and to support agency performance and improvement. Our paper describes development of the NDS and data that are being collected, and summarizes key findings from the 2000, 2001, and 2002 NDS. The data collection process, which began in 1999, has evolved substantially over a 4-year period to the point that we believe the 2002 NDS represents a well-designed core that will receive only minor modifications annually. This database will be invaluable for comparative audit, clinical practice and managing services because only that which is measured can be improved.

Data Collection↗
PubMed2003

Hospice enrollment and pain assessment and management in nursing homes.

This study compared pain assessment and management in the last 48 hours of life for hospice and nonhospice nursing home residents. Included were 209 hospice and 172 nonhospice residents in 28 nursing homes in six geographic areas. Hospice patients were considered short-stay (seven days or less) (n=51), or longer-stay (over seven days) (n=158). Of residents not in a hospital or a coma (n=265), 33% of nonhospice residents, 6% of short-stay and 7% of longer-stay hospice residents had no documented pain assessment (P<0.05). For those with pain documented (n=93), longer-stay hospice residents, compared to nonhospice residents, had a significantly greater likelihood of having received an opioid (adjusted odds ratio [AOR] 5.4; 95% CI 1.3, 21.7), and an opioid at least twice a day (AOR 2.7; 95% CI 0.9, 7.7; P=0.07). Study results suggest that hospice enrollment improves pain assessment and management for nursing home residents; they also document the need for continued improvement of pain management in nursing homes.

Aged↗
PubMed2002

Cost effectiveness of aggressive care for patients with nontraumatic coma.

OBJECTIVE: To estimate the cost effectiveness of aggressive care for patients with nontraumatic coma. DESIGN: Cost-effectiveness analysis. SETTING: Five academic medical centers. PATIENTS: Patients with nontraumatic coma enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). Patients with reversible metabolic causes of coma such as diabetic ketoacidosis or uremia were excluded. MEASUREMENTS: We calculated the incremental cost effectiveness of continuing aggressive care vs. withholding cardiopulmonary resuscitation and ventilatory support after day 3 of coma. We estimated life expectancy based on up to 4.6 yrs of follow-up. Utilities (quality-of-life weights) were estimated using time-tradeoff questions. Costs were based on hospital fiscal data and Medicare data. Separate analyses were conducted for two prognostic groups based on five risk factors assessed on day 3 of coma: age > or = 70 yrs, abnormal brainstem response, absent verbal response, absent withdrawal to pain, and serum creatinine > or = 132.6 micromol/L (1.5 mg/dL). RESULTS: For the 596 patients studied, the median (25th, 75th percentile) age was 67 yrs (range, 55-77), and 52% were female. By 2 months after enrollment, 69% had died, 19% were severely disabled, 7% had survived without severe disability, and 4% had survived with unknown functional status. The incremental cost effectiveness of the more aggressive care strategy was $140,000 (1998 dollars) per quality-adjusted life year (QALY) for high-risk patients (3-5 risk factors, 93% 2-month mortality) and $87,000/QALY for low-risk patients (0-2 risk factors, 49% mortality). In sensitivity analyses, the incremental cost per QALY did not fall below $50,000/QALY, even with wide variation in our baseline estimates. CONCLUSIONS: Continuing aggressive care after day 3 of nontraumatic coma is associated with a high cost per QALY gained, especially for patients at high risk for poor outcomes. Earlier decisions to withhold life-sustaining treatments for patients with very poor prognoses may yield considerable cost savings.

Activities of Daily Living↗
PubMedDate not supplied

The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia.

The lack of valid and reliable instruments designed to measure the experiences of older persons with advanced dementia and those of their health care proxies has limited palliative care research for this condition. This study evaluated the reliability and validity of 3 End-of-Life in Dementia (EOLD) scales that measure the following outcomes: (1) satisfaction with the terminal care (SWC-EOLD), (2) symptom management (SM-EOLD), and (3) comfort during the last 7 days of life (CAD-EOLD). Data were derived from interviews with the health care proxies (SWC-EOLD) and primary care nurses (SM-EOLD, CAD-EOLD) for 189 nursing home residents with advanced dementia living in 15 Boston-area facilities. The scales demonstrated satisfactory to good reliability: SM-EOLD (alpha=0.68), SWC-EOLD (alpha=0.83), and CAD-EOLD (alpha=0.82). The convergent validity of these scales, as measured against other established instruments assessing similar constructs, was good (correlation coefficients ranged from 0.50 to 0.81). The results of this study demonstrate that the 3 EOLD scales demonstrate "internal consistency" reliability and demonstrate convergent validity, and further establish their utility in palliative care dementia research.

Adult↗
PubMedDate not supplied

Preferences for cardiopulmonary resuscitation among patients 80 years or older: the views of patients and their physicians.

OBJECTIVE: To describe the cardiopulmonary resuscitation (CPR) preferences of hospitalized patients aged 80 and older. To examine physicians' perceptions of their patients' preferences and agreement between patients' and physicians' preferences, estimation of prognosis, and assessment of quality of life. DESIGN: Prospective cohort study. SETTING: Four academic hospitals. PARTICIPANTS: Patients 80 years or older hospitalized between January 1993 and November 1994. MEASUREMENTS: Detailed clinical data were collected by chart review and interview. Patients and physicians were interviewed to determine their preferences for cardiopulmonary resuscitation (CPR). Agreement between patients and physicians was assessed using the kappa statistic, which measures agreement beyond chance. RESULTS: Of the 1266 patients studied, their median age was 85 years, and 61% were female. The majority (55%) of the 1010 patients with CPR preference information available desired CPR. Compared with patients, fewer physicians wanted CPR (36%) if they were in their patients' condition. Agreement between patients' preferences and physicians' perceptions of these preferences was low (absolute agreement 63%, kappa = 0.21). Agreement was better between physicians' perceptions of patients' preferences and physicians' desire for themselves if they were in their patients' condition (66%, kappa = 0.36). Agreement between patients' and physicians' estimates of survival was only slight (46%, kappa = 0.10). The majority of the disagreement occurred when the physician's prognostic estimate was worse than the patient's. CONCLUSIONS: The majority of hospitalized patients 80 years older wanted CPR. When asked to imagine themselves in the same clinical situation as their patients, physicians were much less likely to want CPR and viewed CPR as undesirable for most patients. Physicians' estimates of patients' prognoses were less optimistic than patients' estimates, raising the possibility that physicians' knowledge of older patients' poor outcomes from CPR explains their lack of enthusiasm about CPR for most patients 80 years and older.

Academic Medical Centers↗