Karl A. Lorenz

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups

Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. Design A national consultation and prioritising exercise using a modified form of the nominal group technique. Participants Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Setting Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. Results 74% of those invited (210/285) participated. The stage of life to which “end of life care” referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Conclusions Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.

Associations of Symptoms and Health-Related Quality of Life: Findings from a National Study of Persons with HIV Infection

A symptom indicates disorder or disease and has been defined as a patients perception of an abnormal physical, emotional, or cognitive state (1). Symptom assessment is a central task of the physician during the physicianpatient encounter because symptoms compel patients to seek health care and identify possibilities for specific diagnostic and therapeutic interventions. Health-related quality of life, in contrast, refers to general function and well-being but is less familiar to clinicians and is not assessed in routine patient care. This is interesting when we consider that symptoms have also been described as a change from normal function, sensation, or appearance (2) and that health-related quality of life is also used to measure change in function or well-being. Health-related quality-of-life measures designed for research purposes often include symptoms. For example, the widely used Short Form-36 Health Survey (3) includes items assessing pain, fatigue, and depressive symptoms. The Quality of Well-Being Scale includes symptomproblem complexes as one of its four domains, and symptoms contribute substantially to the derivation of the 0 to 1 preference score (4). For example, a burning or itching rash decreases the preference score by 0.240 compared with the 0.106 decrement associated with the inability to perform self-care activities. Disease-targeted measures often ask about many symptoms. For example, the Kidney Disease Quality of Life instrument includes 34 symptomproblem questions (5). Several studies suggest that symptoms and measures of functioning and well-being are empirically correlated (6). A recent analysis of a national sample of patients receiving care for HIV infection revealed a strong monotonic association between HIV-related symptoms and impaired functioning and well-being (7). Each additional symptom was associated with a mean (SD) decrease of approximately 1.5 10 points in physical and mental health-related quality-of-life summary scores. However, this previous study did not investigate whether some symptoms are more strongly associated with physical and mental health than other symptoms. Methods Study Design We evaluated a national probability sample of adults with known HIV infection who made at least one visit to a nonmilitary, nonprison medical provider other than an emergency department in early 1996. From all patients receiving care from 145 HIV providers in 28 metropolitan areas and 51 providers in 25 rural areas throughout the United States, a random sample was selected for face-to-face interviews. Of 4042 eligible participants sampled, 2864 (71%) were interviewed during the baseline study. Two follow-up surveys were conducted, the second between August 1997 and January 1998. Our study evaluated the 2267 patients who responded to both the baseline and second follow-up surveys. Deaths were confirmed by interviews with patient proxies or the patients physician or were documented through the National Death Index. Further details of the study design were reported elsewhere (8, 9). Measures Symptoms Symptoms were selected for inclusion after review of previous research and symptom screens used in HIV clinical trials and incorporating expert judgments of HIV clinicians and community representatives. We constructed an index by summation across 13 symptoms in men and 14 symptoms in women. Symptoms assessed in both men and women included headache; fever, sweats, or chills; pain in the mouth, lips, or gums; white patches in the mouth; dry mouth; genital rashes or sores; nausea or loss of appetite; trouble with eyes; sinus infection, pain, or discharge; pain, numbness, or tingling of hands or feet; persistent cough, difficulty breathing, or difficulty catching ones breath for more than 1 week; diarrhea or loose or watery stools; and weight loss. Women were also asked about the presence of vaginal discharge. All patients were asked about the presence of symptoms since their previous follow-up interviews, an interval that averaged approximately 6 months. Total symptom scores in men and women were standardized by sex to a possible range of 0 to 14. Health-Related Quality of Life and Disability Days We evaluated two single global items assessing major components of health-related quality of life. We selected these measures to avoid the problem of direct inclusion of symptom items, which characterizes many health-related quality-of-life instruments. The questions were as follows: 1) Overall, how would you rate your current health? 2) Overall, how would you rate your quality of life? Both of these items used a response scale of 0 to 10, where 0 represents the worst possible score, 5 is halfway between worst and best, and 10 represents the best possible score. The response scale was adapted from the global ratings items included in the Consumer Assessment of Health Plans Study (10), and all responses were transformed to a scale of 0 to 100. We also assessed disability days, defined as a day in which at least half of the patients time was spent in bed because of poor health. Each of these three items was administered by using a 4-week reporting period. Statistical Analyses The probability of selecting a respondent is a function of the likelihood of selecting a patient from a particular geographic area cared for by a particular HIV provider from among the total population of persons eligible for inclusion in the study. Analysis weights adjust for these sampling factors as well as for attrition due to nonresponse for causes other than death. Although it does not account for persons in the cohort who died during the follow-up interval, statistical weighting ensures that the cohort analyzed in our study represents as much as possible the larger population of HIV-infected patients in the United States (11). We adjusted standard errors for the differential weighting and complex sample design using linearization methods (12). We used randomly drawn donor responses within strata of respondents (hot deck imputation) to fill in the less than 5% of essential missing values (13). We used multiple linear regression to evaluate the independent associations of each symptom with perceived health, perceived quality of life, and disability days. All models were adjusted for the presence of other symptoms and sociodemographic characteristics, including age, sex, ethnicity, education, marital status, income, employment status, health insurance, risk group, stage of illness, region of the United States, and lowest reported CD4 lymphocyte count. Model fitting included the evaluation of all possible interactions; only interactions with a P value less than 0.05 were retained. We report significance tests of both linear terms with their corresponding interaction terms. All analyses were conducted by using Stata 5.0 software (Stata Corp., College Station, Texas). Role of the Funding Sources The funding sources had no role in the collection, analysis, or interpretation of the data or in the decision to submit the manuscript for publication. Results Of the 4042 eligible persons sampled, 2864 (71%) completed the baseline survey. Of those participating in the baseline survey, 2466 (86%) completed the first follow-up survey and 2267 (79%) completed the second follow-up survey. The characteristics of the 2267 persons interviewed for our study are described in Table 1. The 238 persons lost to follow-up because of confirmed death had poorer baseline health than survivors. Table 1. Characteristics of the Analytic Sample The associations of each of the 14 symptoms with perceived health, perceived quality of life, and disability days at second follow-up are shown in Table 2. Regression coefficients and 95% CIs are provided. Eight symptoms (headache; pain in mouth, lips, or gums; white patches in the mouth; dry mouth; nausea or loss of appetite; sinus infection, pain, or discharge; persistent cough, difficulty breathing, or difficulty catching ones breath; and weight loss > 2.25 kg) were associated with worse perceived health scores. Eight symptoms (pain in mouth, lips, or gums; white patches in the mouth; nausea or loss of appetite; trouble with eyes; pain, numbness, or tingling of hands or feet; persistent cough, difficulty breathing, or difficulty catching ones breath; diarrhea or loose or watery stools; and weight loss > 2.25 kg) were associated with worse perceived quality of life. Six symptoms (headache; fever, sweats, or chills; white patches in the mouth; nausea or loss of appetite; persistent cough, difficulty breathing, or difficulty catching ones breath; and weight loss of >2.25 kg) were associated with more disability days. On average, patients with sinus infection, pain, or discharge had higher perceived quality of life, although this was a suppression effect (the correlation was negative but the -coefficient was positive). At the second follow-up, an asymptomatic patient experienced an average quality-of-life score of 93, an average perceived health score of 82, and 0.33 disability day. Compared with the average asymptomatic respondent, among symptomatic patients white patches in the mouth were associated with 4% lower perceived health scores, 6% lower perceived quality-of-life scores, and 1.02 additional disability days. Nausea was associated with 5% lower perceived health scores, 8% lower perceived quality-of-life scores, and 1.03 additional disability days. Dyspnea was associated with 7% lower perceived health scores and 8% lower perceived quality-of-life scores. Weight loss was associated with 3% lower perceived health scores and 4% lower perceived quality-of-life scores. Both dyspnea and weight loss were associated with additional disability days. Table 2. Multivariable Associations of Symptoms with Perceived Health, Perceived Quality of Life, and Disability Days We tested for the presence of statistically significant interactions to assess the possibility that symptoms may be associated differently with healt

The Quality of Care Provided to Hospitalized Patients at the End of Life

BACKGROUND Patients in American hospitals receive intensive medical treatments. However, when lifesaving treatments are unsuccessful, patients often die in the hospital with distressing symptoms while receiving burdensome care. Systematic measurement of the quality of care planning and symptom palliation is needed. METHODS Medical records were abstracted using 16 Assessing Care of Vulnerable Elders quality indicators within the domains of end-of-life care and pain management designed to measure the quality of the dying experience for adult decedents (n = 496) hospitalized for at least 3 days between April 2005 and April 2006 at a university medical center recognized for providing intensive care for the seriously ill. RESULTS Over half of the patients (mean age, 62 years; 47% were women) were admitted to the hospital with end-stage disease, and 28% were 75 years or older. One-third of the patients required extubation from mechanical ventilation prior to death, and 15% died while receiving cardiopulmonary resuscitation. Overall, patients received recommended care for 70% of applicable indicators (range, 25%-100%). Goals of care were addressed in a timely fashion for patients admitted to the intensive care unit approximately half of the time, whereas pain assessments (94%) and treatments for pain (95%) and dyspnea (87%) were performed with fidelity. Follow-up for distressing symptoms was performed less well than initial assessment, and 29% of patients extubated in anticipation of death had documented dyspnea assessments. CONCLUSION A practical, medical chart-based assessment identified discrete deficiencies in care planning and symptom palliation that can be targeted to improve care for patients dying in the hospital.

Quality Indicators for Palliative and End-of-Life Care in Vulnerable Elders

The literature summaries that support each indicator judged valid by the expert panel are described.

Changes in symptoms and health-related quality of life in a nationally representative sample of adults in treatment for HIV

Patient-centered measures of functioning and well-being are needed to monitor and improve health for HIV-infected persons. We estimated the associations between HRQOL and symptoms over time in HIV-infected persons, adjusting for demographic and clinical characteristics using a longitudinal study of a nationally representative cohort of 2267 patients in care for HIV infection surveyed in 1996 and again in 1998. We used two global measures of HRQOL (overall health and overall quality of life) scored to have a mean of 50 and standard deviation of 10 in the sample. The total number of symptoms decreased (−1.29, p<0.001 for the difference), and overall health (1.09, p<0.001 for the difference) and overall quality of life (1.31, p<0.001 for the difference) improved over the period. Controlling for baseline symptoms and HRQOL, each additional symptom at follow-up (B=−1.14, p<0.001) was associated with worsened overall health and worsened overall quality of life (B=−0.95, p<0.001). The association of two additional symptoms with lower global HRQOL was similar in magnitude to the effect of having significant depressive symptoms or the diagnosis of AIDS. In conclusion, among HIV-infected patients, symptoms are significantly related to HRQOL over time. The functioning and well-being of patients with HIV is inextricably linked to the symptoms they experience.

How Reliable is Pain as the Fifth Vital Sign

Background: Although many health care organizations require routine pain screening (eg, “5th vital sign”) with the 0 to 10 numeric rating scale (NRS), its accuracy has been questioned; here we evaluated its accuracy and potential causes for error. Methods: We randomly surveyed veterans and reviewed their charts after outpatient encounters at 2 hospitals and 6 affiliated community sites. Using correlation and receiver operating characteristic analysis, we compared the routinely measured “5th vital sign” (nurse-recorded NRS) with a research-administered NRS (research-recorded NRS) and the Brief Pain Inventory (BPI). Results: During 528 encounters, nurse-recorded NRS and research-recorded NRS correlated moderately (r = 0.627), as did nurse-recorded NRS and BPI severity scales (r = 0.613 for pain during the last 24 hours and r = 0.588 for pain during the past week). Correlation with BPI interference was lower (r = 0.409). However, the research-recorded NRS correlated substantially with the BPI severity during the past 24 hours (r = 0.870) and BPI severity during the last week (r = 0.840). Receiver operating characteristic analysis showed similar results. Of the 98% of cases where a numeric score was recorded, 51% of patients reported their pain was rated qualitatively, rather than with a 0 to 10 scale, a practice associated with pain underestimation (χ2 = 64.04, P < .001). Conclusion: Though moderately accurate, the outpatient “5th vital sign” is less accurate than under ideal circumstances. Personalizing assessment is a common clinical practice but may affect the performance of research tools such as the NRS adopted for routine use.

30-Day Readmissions among Seriously Ill Older Adults

BACKGROUND Inpatient palliative consultation are generally provided to seriously ill hospitalized patients with the intent to alleviate pain and suffering and develop a plan of care for the patient. Although numerous benefits of this service have been documented, little is known about hospital readmission rates and factors associated with these readmissions. OBJECTIVE Our aim was to investigate factors associated with 30-day hospital readmission among patients receiving a consultation from an inpatient palliative care (ICP) team. DESIGN We conducted a retrospective cohort study. SETTING/SUBJECTS Data from 408 managed care patients 65 years old and older were collected in 2007-2009 following an IPC consultation and subsequent hospital discharge. MEASUREMENTS IPC and medical service use records were utilized. RESULTS Among IPC patients, 10% of those discharged from the hospital were readmitted within 30 days. Factors associated with hospital readmission included being discharged from the hospital with no care in the home or to a nursing facility. Receipt of hospice or home-based palliative care post-discharge was associated with significantly lower odds of hospital readmission. CONCLUSIONS This study found that receipt of palliative care following hospital discharge was an important factor in reducing 30-day hospital readmissions. Further study is needed to evaluate the effectiveness of longitudinal palliative care models in reducing 30-day hospital readmissions among seriously ill patients.

Hospice admission practices: Where does hospice fit in the continuum of care?

Objectives: To evaluate selected hospice admission practices that could represent barriers to hospice use and the association between these admission practices and organizational characteristics.

Hospice Use and High-Intensity Care in Men Dying of Prostate Cancer

BACKGROUND Hospice programs improve the quality of life and quality of death for men dying of cancer. We sought to characterize hospice use by men dying of prostate cancer and to compare the use of high-intensity care between those who did or did not enroll in hospice. METHODS We used linked Surveillance, Epidemiology, and End Results-Medicare data to identify a cohort of Medicare beneficiaries who died of prostate cancer between 1992 and 2005. We created 2 multivariable logistic regression models, one to identify factors associated with hospice use and one to determine the association of hospice use with the receipt of diagnostic and interventional procedures and physician visits at the end of life. RESULTS Of 14,521 men dying of prostate cancer, 7646 (53%) used hospice for a median of 24 days. Multivariable modeling demonstrated that African American ethnicity (odds ratio [OR], 0.78; 95% confidence interval [CI], 0.68-0.88) and higher Charlson comorbidity index (OR, 0.49; 95% CI, 0.44-0.55) were associated with lower odds of hospice use, while having a partner (OR, 1.23; 95% CI, 1.14-1.32) and more recent year of death (OR, 1.12; 95% CI, 1.11-1.14) were associated with higher odds of hospice use. Men dying of prostate cancer who enrolled in hospice were less likely (OR, 0.82; 95% CI, 0.74-0.91) to receive high-intensity care, including intensive care unit admissions, inpatient stays, and multiple emergency department visits. CONCLUSIONS The proportion of individuals using hospice is increasing, but the timing of hospice referral remains poor. Those who enroll in hospice are less likely to receive high-intensity end-of-life care.

Cancer quality-ASSIST supportive oncology quality indicator set feasibility, reliability, and validity testing

Although measuring the quality of symptom management and end‐of‐life care could help provide a basis for improving supportive care for advanced cancer, few quality indicators in this area have been rigorously developed or evaluated.