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Biomedical subjects

L L Emanuel

Publications and source records attributed to L L Emanuel.

At least 19 recordsLinked to original sources
PubMed2001

Understanding the experience of pain in terminally ill patients.

BACKGROUND: Terminally ill patients commonly experience substantial pain. Unresolved pain has been cited as evidence that end-of-life care is of poor quality. However, the data on which that conclusion is based are limited. We aimed to provide additional data on the experience of pain in such patients. METHODS: We interviewed 988 terminally ill patients from six randomly selected US sites. We asked them who had treated their pain in the previous 4 weeks (primary-care physician, pain specialist, or both), and whether they wanted more pain medication than they were receiving, or why they did not want more. FINDINGS: 496 (50%) terminally ill patients reported moderate or severe pain. 514 (52%) individuals had seen a primary-care physician for treatment of pain in the previous 4 weeks and 198 (20%) saw a pain specialist. Of those who had been treated by their primary-care physician, 287 (29%) wanted more therapy, 613 (62%) wanted their pain therapy to remain the same, and 89 (9%) wanted to reduce or stop their pain therapy. Several reasons for not wanting additional therapy were offered-fear of addiction, dislike of mental or physical side-effects, and not wanting to take more pills or injections. We saw no association between disease and amount of pain between disease and the desire for more treatment. Black patients were more likely to seek additional pain therapy, see a pain specialist, and refuse additional medication because of fear of addiction than other populations. INTERPRETATION: Although half of terminally ill patients experienced moderate to severe pain, only 30% of them wanted additional pain treatment from their primary-care physician. The number of patients experiencing pain remains too high. However, the number is not as large as perceived. Additionally, most are willing to tolerate pain. Furthermore, the experience of pain is constant across major terminal diseases.

Adult↗
PubMed2001

Shared expectations for protection of identifiable health care information: report of a national consensus process.

OBJECTIVE: The Ethical Force Program is a collaborative effort to create performance measures for ethics in health care. This report lays out areas of consensus that may be amenable to performance measurement on protecting the privacy, confidentiality and security of identifiable health information. DESIGN: Iterative consensus development process. PARTICIPANTS: The program's oversight body and its expert panel on privacy include national leaders representing the perspectives of physicians, patients, purchasers, health plans, hospitals, and medical ethicists as well as public health, law, and medical informatics experts. METHODS AND MAIN RESULTS: The oversight body appointed a national Expert Advisory Panel on Privacy and Confidentiality in September 1998. This group compiled and reviewed existing norms, including governmental reports and legal standards, professional association policies, private organization statements and policies, accreditation standards, and ethical opinions. A set of specific and assessable expectations for ethical conduct in this domain was then drafted and refined through 7 meetings over 16 months. In the final 2 iterations, each expectation was graded on a scale of 1 to 10 by each oversight body member on whether it was: (1) important, (2) universally applicable, (3) feasible to measure, and (4) realistic to implement. The expectations that did not score more than 7 (mean) on all 4 scales were reconsidered and retained only if the entire oversight body agreed that they should be used as potential subjects for performance measurement. Consensus was achieved on 34 specific expectations. The expectations fell into 8 content areas, addressing the need for transparency of policies and practices, consent for use and disclosure of identifiable information, limitations on information that can be collected and by whom, individual access to one's own health records, security requirements for storage and transfer of information, provisions to ensure ongoing data quality, limitations on how identifiable information may be used, and provisions for meaningful accountability. CONCLUSIONS: This process established consensus on 34 measurable ethical expectations for the protection of privacy and confidentiality in health care. These expectations should apply to any organization with access to personally identifiable health information, including managed care organizations, physician groups, hospitals, other provider organizations, and purchasers. Performance measurement on these expectations may improve accountability across the health care system.

Confidentiality↗
PubMed2000

The patient-physician relationship. Ensuring competency in end-of-life care: communication and relational skills.

Physician competence in end-of-life care requires skill in communication, decision making, and building relationships, yet these skills were not taught to the majority of physicians during their training. This article presents a 7-step approach for physicians for structuring communication regarding care at the end of life. Physicians should prepare for discussions by confirming medical facts and establishing an appropriate environment; establish what the patient (and family) knows by using open-ended questions; determine how information is to be handled at the beginning of the patient-physician relationship; deliver the information in a sensitive but straightforward manner; respond to emotions of the patients, parents, and families; establish goals for care and treatment priorities when possible; and establish an overall plan. These 7 steps can be used in situations such as breaking bad news, setting treatment goals, advance care planning, withholding or withdrawing therapy, making decisions in sudden life-threatening illness, resolving conflict around medical futility, responding to a request for physician-assisted suicide, and guiding patients and families through the last hours of living and early stages after death. Effective application as part of core end-of-life care competencies is likely to improve patients' and families' experiences of care. It may also enhance physicians' professional fulfillment from satisfactory relationships with their patients and patients' families.

Advance Care Planning↗
PubMed2000

Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers.

CONTEXT: Euthanasia and physician-assisted suicide (PAS) are highly controversial issues. While there are studies of seriously ill patients' interest in euthanasia and PAS, there are no data on the attitudes and desires of terminally ill patients regarding these issues. OBJECTIVE: To determine the attitudes of terminally ill patients toward euthanasia and PAS, whether they seriously were considering euthanasia and PAS for themselves, the stability of their desires, factors associated with their desires, and the proportion of patients who die from these interventions. DESIGN: Prospective cohort of terminally ill patients and their primary caregivers surveyed twice between March 1996 and July 1997. SETTING: Outpatient settings in 5 randomly selected metropolitan statistical areas and 1 rural county. PARTICIPANTS: A total of 988 patients identified by their physicians to be terminally ill with any disease except for human immunodeficiency virus infection (response rate, 87. 4%) and 893 patient-designated primary caregivers (response rate, 97. 6%). MAIN OUTCOME MEASURES: Support for euthanasia or PAS in standard scenarios; patient-expressed considerations and discussions of their desire for euthanasia or PAS; hoarding of drugs for suicide; patient death by euthanasia or PAS; and patient-reported sociodemographic factors and symptoms related to these outcomes. RESULTS: Of the 988 terminally ill patients, a total of 60.2% supported euthanasia or PAS in a hypothetical situation, but only 10. 6% reported seriously considering euthanasia or PAS for themselves. Factors associated with being less likely to consider euthanasia or PAS were feeling appreciated (odds ratio [OR], 0.65; 95% confidence interval [CI], 0.52-0.82), being aged 65 years or older (OR, 0.52; 95% CI, 0.34-0.82), and being African American (OR, 0.39; 95% CI, 0. 18-0.84). Factors associated with being more likely to consider euthanasia or PAS were depressive symptoms (OR, 1.25; 95% CI, 1.05-1. 49), substantial caregiving needs (OR, 1.09; 95% CI, 1.01-1.17), and pain (OR, 1.26; 95% CI, 1.02-1.56). At the follow-up interview, half of the terminally ill patients who had considered euthanasia or PAS for themselves changed their minds, while an almost equal number began considering these interventions. Patients with depressive symptoms (OR, 5.29; 95% CI, 1.21-23.2) and dyspnea (OR, 1.68; 95% CI, 1.26-2.22) were more likely to change their minds to consider euthanasia or PAS. According to the caregivers of the 256 decedents, 14 patients (5.6%) had discussed asking the physician for euthanasia or PAS and 6 (2.5%) had hoarded drugs. Ultimately, of the 256 decedents, 1 (0.4%) died by euthanasia or PAS, 1 unsuccessfully attempted suicide, and 1 repeatedly requested for her life to be ended but the family and physicians refused. CONCLUSIONS: In this survey, a small proportion of terminally ill patients seriously considered euthanasia or PAS for themselves. Over a few months, half the patients changed their minds. Patients with depressive symptoms were more likely to change their minds about desiring euthanasia or PAS. JAMA. 2000;284:2460-2468.

Adult↗
PubMed2000

Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers.

BACKGROUND: Terminal illness imposes substantial burdens--economic and otherwise--on patients and caregivers. The cause of these burdens is not understood. OBJECTIVE: To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions. DESIGN: In-person interviews of terminally ill patients and their caregivers. SETTING: Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado. PARTICIPANTS: 988 terminally ill patients and 893 caregivers. MEASUREMENTS: Needs for transportation, nursing care, homemaking, and personal care; subjective perception of economic burden; expenditure of more than 10% of household income on health care costs; caregiver depression and sense of interference with his or her life; and patient consideration of euthanasia or physician-assisted suicide. RESULTS: Of all patients, 34.7% had substantial care needs. Patients who had substantial care needs were more likely to report that they had a subjective sense of economic burden (44.9% compared with 35.3%; difference, 9.6 percentage points [95% CI, 3.1 to 16.1]; P = 0.005); that 10% of their household income was spent on health care (28.0% compared with 17.0%; difference, 11.0 percentage points [CI, 4.8 to 17.1]; P < or = 0.001); and that they or their families had to take out a loan or mortgage, spend their savings, or obtain an additional job (16.3% compared with 10.2%; difference, 6.1 percentage points [CI, 1.4 to 10.6]; P = 0.004). Patients with substantial care needs were more likely to consider euthanasia or physician-assisted suicide (P = 0.001). Caregivers of these patients were more likely to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points [CI, 0.4 to 12.8]; P = 0.01) and to report that caring for the patients interfered with their lives (35.6% compared with 24.3%; difference, 11.3 percentage points [CI, 5.0 to 17.7]; P = 0.001). Caregivers of patients whose physicians listened to patients' and caregivers' needs had fewer burdens. CONCLUSIONS: Substantial care needs are an important cause of the economic and other burdens imposed by terminal illness. Through empathy, physicians may be able to ameliorate some of these burdens.

Adult↗
PubMed2000

Hospital informed consent for procedure forms: facilitating quality patient-physician interaction.

BACKGROUND: Informed consent forms should document and reflect the goals of informed consent and shared decision making. We conducted this study to examine the extent to which informed consent for procedure forms meet accepted informed consent standards, how well state informed consent statutes correlate with these standards, and whether existing forms can enhance the interactions between patients and physicians or other health care providers. HYPOTHESIS: Informed consent forms do not meet accepted standards. A different format may be more useful for patient-physician interactions. DESIGN: A content analysis was conducted of hospital informed consent for procedure forms from a random selection of hospitals in the 1994 American Hospital Association membership directory. Forms were examined for evidence of the basic elements of informed consent (nature of the procedure, risks, benefits, and alternatives) and items that might enhance patient-physician interactions and encourage shared decision making. UNIT OF ANALYSIS: From 157 hospitals nationwide, 540 hospital informed consent for procedure forms were examined. MEASUREMENTS AND MAIN RESULTS: Ninety-six percent of forms indicated the nature of the procedure, but risks, benefits, and alternatives were found less often. Only 26% of forms included all 4 basic elements, 35% included 3 of 4 elements, 23% had 2 of 4 elements, 14% had only 1 element, and 2% had none of the elements. Forms appear to authorize treatment (75%) or protect hospitals and caregivers from liability (59%) rather than clarify information about procedures (40%) or aid patients in decision making (14%). Forms from states with statutes that require that all 4 elements be provided were no more likely than other states to include them (Fisher exact test = 1.000). Fewer than 40% of forms supported models of shared decision making. CONCLUSIONS: The content of most forms did not meet accepted standards of informed consent or patient-physician interactions. We propose a form that more fully supports the models of ideal informed consent and shared decision making to enhance the applicability of informed consent in the clinical setting.

Ethics, Medical↗
PubMed1999

Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients.

BACKGROUND: In addition to medical care, dying patients often need many types of assistance, including help with transportation, nursing care, homemaking services, and personal care. We interviewed terminally ill adults and their care givers in six randomly selected areas of the United States (five metropolitan areas and one rural county) to determine how their needs for assistance were met and the frequency with which they received such assistance from family members and paid and volunteer care givers. METHODS: The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome, were referred to the study by their physicians. Of the 1131 eligible patients, 988 (87.4 percent) consented to a detailed in-person interview conducted in English, as did 893 of the 915 eligible primary care givers (97.6 percent). RESULTS: Of the 988 terminally ill patients, 59.4 percent were over the age of 65 years, and 51.5 percent were women. The most frequent terminal illness was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Four percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residence. A need for assistance was reported by 86.8 percent of the patients; they required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26.0 percent). Of the care givers, 72.1 percent were women. Primary care givers were family members in 96.0 percent of cases; only 4.0 percent were unrelated. Most patients relied completely on family members and friends for assistance. A total of 15.5 percent of patients relied only on paid assistance for more than half of the types of care that they needed. Volunteers (that is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care. CONCLUSIONS: In our survey of terminally ill patients, family members, usually women, provided the majority of assistance with nonmedical care. Although many people received assistance from paid care givers, very few had assistance from volunteers.

Aged↗
PubMed1998

Facing requests for physician-assisted suicide: toward a practical and principled clinical skill set.

Requests for physician-assisted suicide are not a new phenomenon, and many physicians are likely to face this challenging situation. This article proposes for professionals an 8-step approach to respond to requests for physician-assisted suicide. The approach seeks to identify and treat the root causes of the request and aims to present a plan for consistent application of a set of clinical skills. Justification for the steps requires only 2 noncontentious principles: the patient should be free of unwanted intervention, and the physician is obligated to provide suffering patients with comfort care. Care based on these 2 principles alone does not include physician-assisted suicide. The approach does, however, justify patient refusal of oral intake in specific circumstances. The approach could resolve a majority of requests for physician-assisted suicide and should be tested further for clinical efficacy.

Advance Care Planning↗
PubMed1997

Can goals of care be used to predict intervention preferences in an advance directive?

BACKGROUND: Some have suggested that advance directives elicit goals of care from patients, instead of or in addition to specific intervention preferences, but little is known about whether goals of care can be used in a meaningful way on documents or whether they can predict preferences for specific interventions. METHODS: Attending physicians (n = 716) at the Massachusetts General Hospital in Boston were surveyed to elicit general goals of care (eg, treat everything or comfort measures only) along with specific preferences for 11 medical, interventions in 6 scenarios. In each scenario, each goal was classified as an adequate predictor of acceptance or rejection of an intervention if its predictive value of the preference for that intervention was at least 80%. RESULTS: Goals varied with scenarios (P < .001) in a predictable manner. The goal treat everything was an adequate predictor of acceptance of each intervention, and comfort was an adequate predictor of rejection for nearly every intervention. Attempt cure adequately predicted acceptance of almost every nonaggressive intervention, but did not predict acceptance of aggressive interventions. Quality of life predicted rejection of aggressive interventions in 3 scenarios, but was not useful in other cases. When goals were predictors of preferences, the mean range of 95% confidence intervals for their predictive values was generally 20% or less. CONCLUSIONS: Goals have a valid role in advance directives, since the goal choices had a logical relationship to scenarios and intervention choices. However, the 2 goals attempt cure and choose quality of life were not predictive in many instances. If these findings hold true for more general populations of patients, then advance directive documents will need to rely on more than these general goal statements if they are to adequately represent patient preferences.

Acute Disease↗
PubMed1997

Preserving community in health care.

There are two prominent trends in health care today: first, increasing demands for accountabilty, and second, increasing provision of care through managed care organizations. These trends promote the question: What form of account-ability is appropriate to managed care plans? Accountability is the process by which a party justifies its actions and policies. Components of accountability include parties that can be held or hold others accountable, domains and content areas being assessed, and procedures of assessment. Traditionally, the professional model of accountability has operated in medical care. In this model, physicians establish the standards of accountability and hold each other accountable through professional organizations. This form of accountability seems outdated and inapplicable to managed care plans. The alternatives are the economic and the political models of accountability. In the economic model, medicine becomes more like a commodity, and "exit" (consumers changing providers for reasons of cost and quality) is the dominant procedure of accountability. In the political model, medicine becomes more like a community good, and "voice" (citizens communicating their views in public forums or on policy committees, or in elections for representatives) is the dominant procedure of accountability. The economic model's advantages affirm American individualism, make minimal demands on consumers, and use a powerful incentive, money. Its disadvantages undermine health care as a nonmarket good, undermine individual autonomy, undermine good medical practice, impose significant demands on consumers to be informed, sustain differentials of power, and use indirect procedures of accountability. The political model's advantages affirm health care as a matter of justice, permit selecting domains other than price and quality for accountability, reinforce good medical practice, and equalize power between patients and physicians. Its disadvantages include inefficiency in decision making, capture by extremists or experts, intractable value conflicts, fragmentation of community, and oppression of minorities. The political model is the model we should endorse. Its disadvantages can be minimized by proper institutional design. In addition, recent research on managed care plans suggests that the political model may be the best for a competitive marketplace because it can ensure that tough allocation decisions are addressed and improve health through changes in nonmedical aspects of community life.

Advisory Committees↗