The Association between Treatment Preferences and Trajectories of Care at the End-of-Life

Background Honoring patients’ treatment preferences is a key component of high-quality end-of-life care. Objective To determine the association of preferences with end-of-life care. Design Observational cohort study. Participants 118 community-dwelling persons age ≥65 years with advanced disease who died in a study which prospectively assessed treatment preferences. Measurements End-of-life care was categorized according to four pathways: (1) relief of symptoms only, (2) limited attempt to reverse acute process with rapid change to symptomatic relief, (3) more intensive attempt to reverse acute process with eventual change to symptomatic relief, and (4) highly intensive attempt to reverse acute process with no change in goal. Results Adjusting for diagnosis, those with greater willingness to undergo intensive treatment (defined as a desire for invasive therapies despite ≥50% chance of death) were significantly more likely to receive care with an initial goal of life prolongation (pathways 2–4) [odds ratio 4.73 (95% confidence interval 1.39–16.08)] than those with lower willingness. Nonetheless, mismatches between preferences and pathways were frequent. Only 1 of 27 participants (4%) with lower willingness to undergo intensive treatment received highly intensive intervention (pathway 4); 53 of 91 participants (58%) with greater willingness to undergo intensive treatment received symptom control only (pathway 1). Conclusions The association between preferences and trajectories of end-of-life care suggests that preferences are used to guide treatment decision-making. In contrast to concerns that patients are receiving unwanted aggressive care, mismatches between preferences and trajectories were more frequently in the direction of patients receiving less aggressive care than they are willing to undergo. Supported by grant PCC-98-070-1 from VA HSR&D, R01 AG19769 from the National Institute on Aging, P30 AG21342 from the Claude D. Pepper Older Americans Independence Center at Yale, and a Paul Beeson Physician Faculty Scholars Award. Dr. Pisani is supported by K23 AG23023 from the National Institute on Aging. Dr. Fried is supported by K02 AG20113 from the National Institute on Aging. Dr. Bradley is supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation Investigator Award (Grant #02-102).     

Impact of Patient Race on Patient Experiences of Access and Communication in HIV Care

BACKGROUND  Patient-centered care—including the domains of access and communication—is an important determinant of positive clinical outcomes. OBJECTIVE  To explore associations between race and HIV-infected patients’ experiences of access and communication. DESIGN  This was a cross-sectional survey. PARTICIPANTS  Nine hundred and fifteen HIV-infected adults receiving care at 14 U.S. HIV clinics. MEASUREMENTS  Dependent variables included patients’ reports of travel time to their HIV care site and waiting time to see their HIV provider (access) and ratings of their HIV providers on always listening, explaining, showing respect, and spending enough time with them (communication). We used multivariate logistic regression to estimate associations between patient race and dependent variables, and random effects models to estimate site-level contributions. RESULTS  Patients traveled a median 30 minutes (range 1–180) and waited a median 20 minutes (range 0–210) to see their provider. On average, blacks and Hispanics reported longer travel and wait times compared with whites. Adjusting for HIV care site attenuated this association. HIV care sites that provide services to a greater proportion of blacks and Hispanics may be more difficult to access for all patients. The majority of patients rated provider communication favorably. Compared to whites, blacks reported more positive experiences with provider communication. CONCLUSIONS  We observed racial disparities in patients’ experience of access to care but not in patient–provider communication. Disparities were explained by poor access at minority-serving clinics. Efforts to make care more patient-centered for minority HIV-infected patients should focus more on improving access to HIV care in minority communities than on improving cross-cultural patient–provider interactions.     

Primary Care Physicians’ Use of an Electronic Medical Record System: A Cognitive Task Analysis

OBJECTIVE  To describe physicians’ patterns of using an Electronic Medical Record (EMR) system; to reveal the underlying cognitive elements involved in EMR use, possible resulting errors, and influences on patient–doctor communication; to gain insight into the role of expertise in incorporating EMRs into clinical practice in general and communicative behavior in particular. DESIGN  Cognitive task analysis using semi-structured interviews and field observations. PARTICIPANTS  Twenty-five primary care physicians from the northern district of the largest health maintenance organization (HMO) in Israel. RESULTS  The comprehensiveness, organization, and readability of data in the EMR system reduced physicians’ need to recall information from memory and the difficulty of reading handwriting. Physicians perceived EMR use as reducing the cognitive load associated with clinical tasks. Automaticity of EMR use contributed to efficiency, but sometimes resulted in errors, such as the selection of incorrect medication or the input of data into the wrong patient’s chart. EMR use interfered with patient–doctor communication. The main strategy for overcoming this problem involved separating EMR use from time spent communicating with patients. Computer mastery and enhanced physicians’ communication skills also helped. CONCLUSIONS  There is a fine balance between the benefits and risks of EMR use. Automaticity, especially in combination with interruptions, emerged as the main cognitive factor contributing to errors. EMR use had a negative influence on communication, a problem that can be partially addressed by improving the spatial organization of physicians’ offices and by enhancing physicians’ computer and communication skills.     

Differences in the Quality of the Patient–Physician Relationship Among Terminally Ill African-American and White Patients: Impact on Advance Care Planning and Treatment Preferences

BACKGROUND Little is known about the quality of the patient–physician relationship for terminally ill African Americans. OBJECTIVE To compare the quality of the patient–physician relationship between African-American and white patients and examine the extent to which relationship quality contributes to differences in advance care planning (ACP) and preferences for intensive life-sustaining treatment (LST). DESIGN Cross sectional survey of 803 terminally ill African-American and white patients. MEASUREMENTS Patient-reported quality of the patient–physician relationship (degree of trust, perceived respect, and joint decision making; skill in breaking bad news and listening; help in navigating the medical system), ACP, preferences for LST (cardiopulmonary resuscitation, major surgery, mechanical ventilation, and dialysis). RESULTS The quality of the patient–physician relationship was worse for African Americans than for white patients by all measures except trust. African Americans were less likely to have an ACP (adjusted relative risk [aRR] = 0.66, 95%CI = 0.52–0.84), and were more likely to have a preference for cardiopulmonary resuscitation and dialysis (aRR = 1.28, 95%CI = 1.03–1.58; aRR = 1.25, 95%CI = 1.07–1.47, respectively). Additional adjustment for the quality of the patient–physician relationship had no impact on the differences in ACP and treatment preferences. CONCLUSIONS Lower reported patient–physician relationship quality for African-American patients does not explain the observed differences between African Americans and whites in ACP and preferences for LST.     

Paid and unpaid support received by co-resident informal caregivers attending to community-dwelling older adults in Spain

In this study from Spain, support received from outside the household by informal caregivers of people older than 64 years is analysed. The Spanish Time Use Survey (2002–2003) is used to examine: (1) the proportion of co-resident informal caregivers receiving paid and unpaid support by persons from outside the home; (2) the main factors associated with receipt of external paid and unpaid support; and, (3) factors linked to the amount of support received in terms of time. The study sample included 404 caregivers who cohabited with the person receiving care. We used a modified Andersen Behavioural Model as the analytic framework. Significant differences are observed in receipt of support according to predisposing, enabling and need factors. Overall, support (paid and unpaid) is significantly lower among households with women caregivers. In comparison with the least educated caregivers, higher levels of paid support are observed among those with secondary school or higher education, even when income, household size and receiver’s age are included in the model. After controlling for care receivers’ disability level and age, unpaid support is significantly higher among employed caregivers, spouses and caregivers living in medium-sized cities, versus unemployed caregivers, other relatives and caregivers living in large cities, respectively. These data highlight the inequalities of resources in terms of caregiver gender, socio-economic status and population size. The findings underscore the need to extend analysis not only to primary caregivers, but to caregiving networks and other types of caregiver support as well.     

Giving up on the objective of providing goal-concordant care: Advance care planning for improving caregiver outcomes

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.     

Expanding Clinical Empathy: An Activist Perspective

ABTRACT BACKGROUND  Discussions of empathy in health care offer important ways of enabling communication and interpersonal connection that are therapeutic for the patient and satisfying for the physician. While the best of these discussions offer valuable insights into the patient-physician relationship, many of them lack an action component for alleviating the patient’s suffering and emphasize the physician’s experience of empathy rather than the patient’s experience of illness. METHODS  By examining educational methods, such as reflective writing exercises and the study of literary texts, and by analyzing theoretical approaches to empathy and suggestions for clinical practice, this article considers how to mindfully keep the focus on what the patient is going through. CONCLUSION  Clinical empathy can be improved by strategies that address (1) the patient’s authority in providing first-person accounts of illness and disability, (2) expanding the concept of empathy to include an action component geared toward relieving patients’ suffering, and (3) the potential value of extending empathy to include the social context of illness. Clinical Empathy: Uncovering Assumptions and Acting for the Patient in Social Context     

Key Elements of High-Quality Primary Care for Vulnerable Elders

With the impending surge in the number of older adults, primary care clinicians will increasingly need to manage the care of vulnerable elders. Caring for vulnerable elders is complex because of their wide range of health goals and the interdependence of medical care and community supports needed to achieve those goals. In this article, we identify ways a primary care practice can reorganize to improve the care of vulnerable elders. We begin by identifying important outcomes for vulnerable elders and three key processes of care (communication, developing a personal care plan for each patient, and care coordination) needed to achieve these outcomes. We then describe two delivery models of primary care for vulnerable elders – co-management, and augmented primary care. Finally, we discuss how the physical plant, people, workflow management, and community linkages in a primary care practice can be restructured to better serve these patients. Support: David Ganz was supported by the UCLA Claude Pepper Older Americans Independence Center funded by the National Institute on Aging (5P30AG028748) and the Veterans Affairs Health Services Research and Development Service (VA CD2 08–012–1). Shinyi Wu is supported by the Roybal Center for Health Policy Simulation funded by the National Institute on Aging (5P30AG024968–02). The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or Zynx Health Incorporated.     

Advance care planning in COPD

The review aims to discuss current concepts in advance care planning (ACP) for patients with COPD, and to provide a narrative review of recent trends in ACP and end-of-life care for patients with COPD. ACP, which involves patient-clinician communication about end-of-life care, can improve outcomes for patients and their families, and may be especially relevant for patients with COPD. Effective patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis and what dying might be like. It is important for clinicians to understand patients' values and preferences for life-sustaining treatments as well for their site of terminal care. Unfortunately, discussions about ACP and end-of-life care in current practice are scarce, and their quality is often poor. ACP can improve outcomes for patients and their relatives. The challenge remains in the practical implementation of ACP in the clinical setting, especially for patients with COPD. ACP should be implemented alongside curative-restorative care for patients with advanced COPD. The disease course of COPD is such that there will rarely be a clear transition point predicting the timing of the need for initiation of end-of-life care. Future studies should focus on interventions that facilitate concurrent ACP and prepare patients for making in-the-moment decisions, with the goal of improving the quality of end-of-life care.     

Can Primary Care Visits Reduce Hospital Utilization Among Medicare Beneficiaries at the End of Life?

Background  Medical care at the end of life is often expensive and ineffective. Objective  To explore associations between primary care and hospital utilization at the end of life. Design  Retrospective analysis of Medicare data. We measured hospital utilization during the final 6 months of life and the number of primary care physician visits in the 12 preceding months. Multivariate cluster analysis adjusted for the effects of demographics, comorbidities, and geography in end-of-life healthcare utilization. Subjects  National random sample of 78,356 Medicare beneficiaries aged 66+ who died in 2001. Non-whites were over-sampled. All subjects with complete Medicare data for 18 months prior to death were retained, except for those in the End Stage Renal Disease program. Measurements  Hospital days, costs, in-hospital death, and presence of two types of preventable hospital admissions (Ambulatory Care Sensitive Conditions) during the final 6 months of life. Results  Sample characteristics: 38% had 0 primary care visits; 22%, 1–2; 19%, 3–5; 10%, 6–8; and 11%, 9+ visits. More primary care visits in the preceding year were associated with fewer hospital days at end of life (15.3 days for those with no primary care visits vs. 13.4 for those with ≥9 visits, P < 0.001), lower costs ($24,400 vs. $23,400, P < 0.05), less in-hospital death (44% vs. 40%, P < 0.01), and fewer preventable hospitalizations for those with congestive heart failure (adjusted odds ratio, aOR = 0.82, P < 0.001) and chronic obstructive pulmonary disease (aOR = 0.81, P = 0.02). Conclusions  Primary care visits in the preceding year are associated with less, and less costly, end-of-life hospital utilization. Increased primary care access for Medicare beneficiaries may decrease costs and improve quality at the end of life.     

End-of-life decision making

OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals. DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective. SETTING: A senior center and a multilevel retirement community in Los Angeles. PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making. MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a “full life.” Decisionmaking authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient’s interests), and shifted from physician to family as the patient’s prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions. CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients’ end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients’ and families’ goals for care. This research was partially funded by the Robert Wood Johnson Clinical Scholars Program. The views expressed above are those of the authors and do not necessarily reflect those of the Robert Wood Johnson Foundation.     

Family Caregivers,Patients and Physicians: Ethical Guidance to Optimize Relationships

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient–physician–caregiver relationships.     

Posttraumatic Stress and Complicated Grief in Family Members of Patients in the Intensive Care Unit

Background  Family members of patients in intensive care units (ICUs) are at risk for mental health morbidity both during and after a patient’s ICU stay. Objectives  To determine prevalences of and factors associated with anxiety, depression, posttraumatic stress and complicated grief in family members of ICU patients. Design  Prospective, longitudinal cohort study. Participants  Fifty family members of patients in ICUs at a large university hospital participated. Measurements  We used the Control Preferences Scale to determine participants’ role preferences for surrogate decision-making. We used the Hospital Anxiety and Depression Scale, Impact of Event Scale, and Inventory of Complicated Grief to measure anxiety and depression (at enrollment, 1 month, 6 months), posttraumatic stress (6 months), and complicated grief (6 months). Results  We interviewed all 50 participants at enrollment, 39 (78%) at 1 month, and 34 (68%) at 6 months. At the three time points, anxiety was present in 42% (95% CI, 29–56%), 21% (95% CI, 10–35%), and 15% (95% CI, 6–29%) of participants. Depression was present in 16% (95% CI, 8–28%), 8% (95% CI, 2–19%), and 6% (95% CI, 1–18%). At 6 months, 35% (95% CI, 21–52%) of participants had posttraumatic stress. Of the 38% who were bereaved, 46% (95% CI, 22–71%) had complicated grief. Posttraumatic stress was not more common in bereaved than nonbereaved participants, and neither posttraumatic stress nor complicated grief was associated with decision-making role preference or with anxiety or depression during the patient’s ICU stay. Conclusions  Symptoms of anxiety and depression diminished over time, but both bereaved and nonbereaved participants had high rates of posttraumatic stress and complicated grief. Family members should be assessed for posttraumatic stress and complicated grief.     

Association of Communication Between Hospital-based Physicians and Primary Care Providers with Patient Outcomes

BACKGROUND  Patients admitted to general medicine inpatient services are increasingly cared for by hospital-based physicians rather than their primary care providers (PCPs). This separation of hospital and ambulatory care may result in important care discontinuities after discharge. We sought to determine whether communication between hospital-based physicians and PCPs influences patient outcomes. METHODS  We approached consecutive patients admitted to general medicine services at six US academic centers from July 2001 to June 2003. A random sample of the PCPs for consented patients was contacted 2 weeks after patient discharge and surveyed about communication with the hospital medical team. Responses were linked with the 30-day composite patient outcomes of mortality, hospital readmission, and emergency department (ED) visits obtained through follow-up telephone survey and National Death Index search. We used hierarchical multi-variable logistic regression to model whether communication with the patient’s PCP was associated with the 30-day composite outcome. RESULTS  A total of 1,772 PCPs for 2,336 patients were surveyed with 908 PCPs responses and complete patient follow-up available for 1,078 patients. The PCPs for 834 patients (77%) were aware that their patient had been admitted to the hospital. Of these, direct communication between PCPs and inpatient physicians took place for 194 patients (23%), and a discharge summary was available within 2 weeks of discharge for 347 patients (42%). Within 30 days of discharge, 233 (22%) patients died, were readmitted to the hospital, or visited an ED. In adjusted analyses, no relationship was seen between the composite outcome and direct physician communication (adjusted odds ratio 0.87, 95% confidence interval 0.56 – 1.34), the presence of a discharge summary (0.84, 95% CI 0.57–1.22), or PCP awareness of the index hospitalization (1.08, 95% CI 0.73–1.59). CONCLUSION  Analysis of communication between PCPs and inpatient medical teams revealed much room for improvement. Although communication during handoffs of care is important, we were not able to find a relationship between several aspects of communication and associated adverse clinical outcomes in this multi-center patient sample. This paper was presented at the Society for General Internal Medicine Annual Meeting in April 2006.     

The Relationship Between Multimorbidity and Patients’ Ratings of Communication

BACKGROUND  The growing interest in pay-for-performance and other quality improvement programs has generated concerns about potential performance measurement penalties for providers who care for more complex patients, such as patients with more chronic conditions. Few data are available on how multimorbidity affects common performance metrics. OBJECTIVE  To examine the relationship between multimorbidity and patients’ ratings of communication, a common performance metric. DESIGN  Cross-sectional study SETTING  Nationally representative sample of U.S. residents PARTICIPANTS  A total of 15,709 noninstitutionalized adults living in the United States participated in a telephone interview. MEASUREMENTS  We used 2 different measures of multimorbidity: 1) “individual conditions” approach disregards similarities/concordance among chronic conditions and 2) “condition-groups” approach considers similarities/concordance among conditions. We used a composite measure of patients’ ratings of patient–physician communication. RESULTS  A higher number of individual conditions is associated with lower ratings of communication, although the magnitude of the relationship is small (adjusted average communication scores: 0 conditions, 12.20; 1–2 conditions, 12.06; 3+ conditions, 11.90; scale range 5 = worst, 15 = best). This relationship remains statistically significant when concordant relationships among conditions are considered (0 condition groups 12.19; 1–2 condition groups 12.03; 3+ condition groups 11.94). CONCLUSIONS  In our nationally representative sample, patients with more chronic conditions gave their doctors modestly lower patient–doctor communication scores than their healthier counterparts. Accounting for concordance among conditions does not widen the difference in communication scores. Concerns about performance measurement penalty related to patient complexity cannot be entirely addressed by adjusting for multimorbidity. Future studies should focus on other aspects of clinical complexity (e.g., severity, specific combinations of conditions).     

Patient Experiences with Coordination of Care: The Benefit of Continuity and Primary Care Physician as Referral Source

BACKGROUND  Coordination across a patient’s health needs and providers is important to improving the quality of care. OBJECTIVES  (1) Describe the extent to which adults report that their care is coordinated between their primary care physician (PCP) and specialists and (2) determine whether visit continuity with one’s PCP and the PCP as the referral source for specialist visits are associated with higher coordination ratings. DESIGN  Cross-sectional study of the 2007 Health Tracking Household Survey. PARTICIPANTS  A total of 3,436 adults with a PCP and one or more visits to a specialist in the past 12 months. MEASUREMENTS  Coordination measures were patient perceptions of (1) how informed and up to date the PCP was about specialist care received, (2) whether the PCP talked with the patient about what happened at the recent specialist visit and (3) how well different doctors caring for a patient’s chronic condition work together to manage that care. RESULTS  Less than half of respondents (46%) reported that their PCP always seemed informed about specialist care received. Visit continuity with the PCP was associated with better coordination of specialist care. For example, 62% of patients who usually see the same PCP reported that their PCP discussed with them what happened at their recent specialist visit vs. 48% of those who do not usually see the same PCP (adjusted percentages, p < 0.0001). When a patient’s recent specialist visit was based on PCP referral (vs. self-referral or some other source), 50% reported that the PCP was informed and up to date about specialist care received (vs. 35%, p < 0.0001), and 66% reported that their PCP discussed with them what happened at their recent specialist visit (vs. 47%, p < 0.0001). CONCLUSIONS  Facilitating visit continuity between the patient and PCP, and encouraging the use of the PCP as the referral source would likely enhance care coordination.     

Racial and Ethnic Disparities in the VA Health Care System: A Systematic Review

Objectives To better understand the causes of racial disparities in health care, we reviewed and synthesized existing evidence related to disparities in the “equal access” Veterans Affairs (VA) health care system. Methods We systematically reviewed and synthesized evidence from studies comparing health care utilization and quality by race within the VA. Results Racial disparities in the VA exist across a wide range of clinical areas and service types. Disparities appear most prevalent for medication adherence and surgery and other invasive procedures, processes that are likely to be affected by the quantity and quality of patient–provider communication, shared decision making, and patient participation. Studies indicate a variety of likely root causes of disparities including: racial differences in patients’ medical knowledge and information sources, trust and skepticism, levels of participation in health care interactions and decisions, and social support and resources; clinician judgment/bias; the racial/cultural milieu of health care settings; and differences in the quality of care at facilities attended by different racial groups. Conclusions Existing evidence from the VA indicates several promising targets for interventions to reduce racial disparities in the quality of health care.