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Biomedical subjects

J A Tulsky

Publications and source records attributed to J A Tulsky.

At least 19 recordsLinked to original sources
PubMed2001

Preparing for the end of life: preferences of patients, families, physicians, and other care providers.

To examine patients', families', and health care providers' preferences regarding preparation for the end of life, attributes of preparation were generated in qualitative focus group discussions and subsequently tested for generalizability in a quantitative national survey. Respondents from all groups showed consensus on the importance of naming someone to make decisions, knowing what to expect about one's physical condition, having financial affairs in order, having treatment preferences in writing, and knowing that one's physician is comfortable talking about death and dying. Patients were more likely than physicians to want to plan funerals and know the timing of death and less likely than all other groups to want to discuss personal fears. Participants in care of dying patients agree overwhelmingly with the importance of preparation. However, significant barriers to preparation impede it from being a common part of clinical encounters. Further research and training are needed to ensure that the desire for greater preparation is translated into improved action toward preparation in medical practice.

Adult↗
PubMed2001

Conflict associated with decisions to limit life-sustaining treatment in intensive care units.

OBJECTIVE: To determine the incidence and nature of interpersonal conflicts that arise when patients in the intensive care unit are considered for limitation of life-sustaining treatment. DESIGN: Qualitative analysis of prospectively gathered interviews. SETTING: Six intensive care units at a university medical center. PARTICIPANTS: Four hundred six physicians and nurses who were involved in the care of 102 patients for whom withdrawal or withholding of treatment was considered. MEASUREMENTS: Semistructured interviews addressed disagreements during life-sustaining treatment decision making. Two raters coded transcripts of the audiotaped interviews. MAIN RESULTS: At least 1 health care provider in 78% of the cases described a situation coded as conflict. Conflict occurred between the staff and family members in 48% of the cases, among staff members in 48%, and among family members in 24%. In 63% of the cases, conflict arose over the decision about life-sustaining treatment itself. In 45% of the cases, conflict occurred over other tasks such as communication and pain control. Social issues caused conflict in 19% of the cases. CONCLUSIONS: Conflict is more prevalent in the setting of intensive care decision making than has previously been demonstrated. While conflict over the treatment decision itself is most common, conflict over other issues, including social issues, is also significant. By identifying conflict and by recognizing that the treatment decision may not be the only conflict present, or even the main one, clinicians may address conflict more constructively.

Aged↗
PubMed2001

Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support.

OBJECTIVE: To identify critical psychosocial supports and areas of conflict for families of intensive care unit (ICU) patients during decisions to withdraw or withhold life-sustaining treatment. DESIGN: Cross-sectional survey. SETTING: Six intensive care units in a tertiary care academic medical center. PARTICIPANTS: Forty-eight family members, one per case, of patients previously hospitalized in the ICU who had been considered for withdrawal or withholding of life-sustaining treatment. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Two raters coded transcripts of audiotaped interviews with family members about their experiences in the ICU and the decision-making process for withdrawing or withholding life-sustaining treatment. Codes identified sources of conflict and personal, institutional, and staff supports on which families relied during the decision-making process. Forty-six percent of respondents perceived conflict during their family member's ICU stay; the vast majority of conflicts were between themselves and the medical staff and involved communication or perceived unprofessional behavior (such as disregarding the primary caregiver in treatment discussions). Sixty-three percent of family members previously had spoken with the patient about his or her end-of-life treatment preferences, which helped to lessen the burden of the treatment decision. Forty-eight percent of family members reported the reassuring presence of clergy, and 27% commented on the need for improved physical space to have family discussion and conferences with physicians. Forty-eight percent of family members singled out their attending physician as the preferred source of information and reassurance. CONCLUSIONS: Many families perceived conflict during end-of-life treatment discussions in the ICU. Conflicts centered on communication and behavior of staff. Families identified pastoral care and prior discussion of treatment preferences as sources of psychosocial support during these discussions. Families sought comfort in the identification and contact of a "doctor-in-charge." ICU policies such as family conference rooms and lenient visitation accommodate families during end-of-life decision-making.

Adult↗
PubMed2001

Measuring patient expectations: does the instrument affect satisfaction or expectations?

BACKGROUND: Fulfillment of patients' expectations may influence health care utilization, affect patient satisfaction, and be used to indicate quality of care. Several different instruments have been used to measure expectations, yet little is known about how different assessment methods affect outcomes. OBJECTIVE: The object of the study was to determine whether different measurement instruments elicit different numbers and types of expectations and different levels of patient satisfaction. DESIGN: Patients waiting to see their physician were randomly assigned to receive 1 of 2 commonly used instruments assessing expectations or were assigned to a third (control) group that was not asked about expectations. After the visit, patients in all 3 groups were asked about their satisfaction and services they received. SUBJECTS: The study subjects were 290 male, primary care outpatients in a VA general medicine clinic. MEASURES: A "short" instrument asked about 3 general expectations for tests, referrals, and new medications, while a "long" instrument nested similar questions within a more detailed list. Wording also differed between the 2 instruments. The short instrument asked patients what they wanted; the long instrument asked patients what they thought was necessary for the physician to do. Satisfaction was measured with a visit-specific questionnaire and a more general assessment of physician interpersonal skills. RESULTS: Patients receiving the long instrument were more likely to express expectations for tests (83% vs. 28%, P <0.001), referrals (40% vs. 18%, P <0.001), and new medications (45% vs. 28%, P <0.001). The groups differed in the number of unmet expectations: 40% of the long instrument group reported at least 1 unmet expectation compared with 19% of the short instrument group (P <0.001). Satisfaction was similar among the 3 groups. CONCLUSIONS: These different instruments elicit different numbers of expectations but do not affect patient satisfaction.

Ambulatory Care Facilities↗
PubMed2000

Factors considered important at the end of life by patients, family, physicians, and other care providers.

CONTEXT: A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking. OBJECTIVE: To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. DESIGN AND SETTING: Cross-sectional, stratified random national survey conducted in March-August 1999. PARTICIPANTS: Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429). MAIN OUTCOME MEASURES: Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. RESULTS: Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. CONCLUSIONS: Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. JAMA. 2000;284:2476-2482.

Aged↗
PubMed2000

In search of a good death: observations of patients, families, and providers.

Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.

Adult↗
PubMed2000

Responding to legal requests for physician-assisted suicide. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel.

In 1998, 15 terminally ill Oregon residents ended their lives with overdoses of medications supplied legally by their physicians. Many more people consider this possibility. This paper examines the ways in which the physician's response to requests for assisted suicide may change in an era of legalization, articulates some of the resulting conceptual challenges, and provides practical advice to physicians facing such requests. In areas where it is legal, assisted dying becomes one of the many options that can be freely considered for terminally ill patients with extreme suffering. Some patients even view assisted death as a right that can be expected on demand. We consider the ethical implications of disclosing assisted dying to patients as an option of last resort and suggest that physicians working in environments where assisted dying is legal are obliged to do so. However, we conclude that physicians should not encourage patients to hasten death even when practicing in jurisdictions that allow assisted dying. Furthermore, without abandoning the model, we suggest that strict informed consent does not fully address patients' needs at this time. Physicians must also focus on patients' broader biopsychosocial concerns and help them identify solutions through empathic listening and emotional support. We provide a framework and vocabulary for physicians to use when responding to requests for assisted suicide. Physicians should clarify the request, explore and address the patient's concerns, achieve a shared understanding of the goals of treatment, search for less harmful alternatives, express to the patient what they are willing to do, discuss the relevant legal issues, and share their decision making with colleagues.

Decision Making↗
PubMed2000

Talking to the older adult about advance directives.

Discussing advance care plans with elderly patients can improve the experience of end-of-life care for patients, families, and health care teams. Specific goals for any particular discussion should be based on patients' particular clinical circumstances. Physicians should focus on patients' overall values and goals and should provide emotional support during the discussion. Decisions made during the advance care planning process should be documented.

Adult↗
PubMed2000

The evolution of volunteerism and professional staff within hospice care in North Carolina.

Although the pursuit of Medicare certification has been one of the most controversial events in hospice history no study has examined its impact using data from a defined population of hospices before, during, and after federal legislation was enacted. This paper revisits the debate over the changing role of volunteers using such a longitudinal data source. Over time, as the patient population grew, aggregate levels of volunteers and professional staff increased. However, the ratios of professional staff and volunteers to patients reveal that regardless of certification status, hospices retained more professional staff per patient and fewer volunteers per patient over time. These data suggest hospices, particularly certified organizations, have transitioned from voluntary organizations to professionally staffed organizations with a strong volunteer component. The most important issue for future research is whether the observed changes have affected the quality of hospice care.

Accreditation↗
PubMed1998

Opening the black box: how do physicians communicate about advance directives?

BACKGROUND: The quality of communication that leads to the completion of written advance directives may influence the usefulness of these documents, but the nature of that communication remains relatively unexplored. OBJECTIVE: To describe how physicians discuss advance directives with patients. DESIGN: Prospective study. SETTING: Five outpatient primary care medicine practices in Durham, North Carolina, and Pittsburgh, Pennsylvania. PARTICIPANTS: 56 attending internists and 56 of their established patients. Eligible patients were at least 65 years of age or had a serious medical illness. MEASUREMENTS: Two raters coded transcripts of audiotaped discussions about advance directives to document how physicians introduced the topic of advance directives, discussed scenarios and treatments, provided information, elicited patient values, and identified surrogate decision makers. RESULTS: Conversations about advance directives averaged 5.6 minutes; physicians spoke for two thirds of this time. In 91% of cases, physicians discussed dire scenarios in which most patients would not want to be treated, and 48% asked patients about their preferences in reversible scenarios. Fifty-five percent of physicians discussed scenarios involving uncertainty, typically using vague language. Patients' values were rarely explored in detail. In 88% of cases, physicians discussed surrogate decision making and documents to aid in advance care planning. CONCLUSIONS: Although they accomplished the goal of introducing patients to advance directives, discussions infrequently dealt with patients' values and attitudes toward uncertainty. Physicians may not have addressed the topic in a way that would be of substantial use in future decision making, and these discussions did not meet the standards proposed in the literature.

Adult↗
PubMed1998

Patient knowledge and physician predictions of treatment preferences after discussion of advance directives.

OBJECTIVE: To determine patient knowledge about life-sustaining treatments and physician understanding of patient preferences for proxies and treatments after outpatient discussions about advance directives. DESIGN: Cross-sectional interview-based and questionnaire-based survey. SETTING: Two university general internal medicine practices, two Department of Veterans Affairs general internal medicine practices, and one university-based geriatrics practice, in two different cities. PATIENTS: Fifty-six patients of primary care internists. INTERVENTION: Physicians discussed "advance directives" (ADs) with one randomly selected patient during an outpatient visit. MEASUREMENTS AND MAIN RESULTS: After the discussions, physicians identified the patient's proxy and predicted the patient's preferences for treatment in 20 scenarios. Patients provided treatment preferences in the 20 scenarios, the name of their preferred surrogate decision maker, and their understanding of cardiopulmonary resuscitation and mechanical ventilation. Of the 39 patients who discussed resuscitation, 43% were able to identify two important characteristics; 26% identified none; 66% did not know that most patients need mechanical ventilation after undergoing resuscitation. None of the 43 patients who had a discussion about mechanical ventilation had a good understanding of it; 67% did not know that patients generally cannot talk while on ventilators; 46% expressed serious misconceptions about ventilators. There was poor agreement between physicians and their patients regarding treatment preferences in 18 of 20 scenarios (kappa -0.04 to 0.31). Physicians correctly identified the proxy 89% of the time (kappa 0.78). CONCLUSIONS: Patients leave routine AD discussions with serious misconceptions about life-sustaining treatments. Physicians are unable to predict treatment preferences but do learn about patients' preferences for surrogate decision makers.

Advance Directives↗
PubMed1997

Can clinical interventions change care at the end of life?

PURPOSE: To review clinical interventions designed to change care at the end of life. DATA SOURCES: Published results of clinical trials identified by MEDLINE searches, review of abstracts from meetings, and selected bibliographies. STUDY SELECTION: Studies were included if data were presented on a clinical intervention designed to change medical care at the end of life. Studies done in nonclinical settings or outside the United States were excluded. DATA EXTRACTION: Interventions were classified as targeting patients, physicians, or both and were analyzed by their effect on four common clinical goals: increasing use of patient preferences, decreasing pain and suffering, reducing use of life-sustaining treatments, and reducing costs. Positive and negative trial results were compared for differences in intervention, target group, and strength of study methods. DATA SYNTHESIS: Educational interventions usually increased expression of patient treatment preferences. Success rates were higher when more severely ill patients were targeted and when written materials were combined with repeated discussions in clinical encounters. Educational interventions with physicians led to increased use of patient preferences, but sophisticated educational techniques were needed to motivate physicians to change their behavior. Three studies provided limited evidence that physician education reduced the use of life-sustaining treatments. No clinical intervention had an effect on pain, suffering, or cost of medical care. CONCLUSION: To change care at the end of life, intensive educational interventions for physicians and broad institutional programs seem more promising than advance directives. Future innovations should seek to change physician practices, reduce costs, and improve patient-centered outcomes, such as pain control and satisfaction.

Empirical Research↗
PubMed1996

See one, do one, teach one? House staff experience discussing do-not-resuscitate orders.

BACKGROUND: Medical residents commonly discuss resuscitation decisions with hospitalized patients. Previous studies suggest that the quality of these discussions is poor. OBJECTIVE: To learn about residents' experience with do-not-resuscitate (DNR) discussions and their attitudes toward them. METHODS: Medical house officers on the wards of three teaching hospitals were eligible to participate. A subset had previously audiotaped actual DNR discussions as part of a study that described the quality of discussions. In a self-administered questionnaire, house officers rated their performance conducting a recent DNR discussion, stated their attitudes, and described their experience learning to talk to patients about these issues. RESULTS: One hundred one (88%) of 115 residents responded to the survey. Eighty-six (90%) of 96 stated they had done a good job with the discussion and 78 (77%) of 101 reported feeling comfortable discussing the topic with patients. Ninety-four (94%) of 100 residents said they discuss code status with all seriously ill patients and while on the medical wards they conduct a median of one DNR discussion per week. On average, they had observed four discussions conducted by more senior clinicians. One third of the residents had never been observed talking to patients about DNR decisions and 71% had been observed two or fewer times. CONCLUSIONS: These findings help explain the observations about the quality of DNR discussions. House staff "see" and "do" these discussions, but are not taught through observation and feedback. We recommend that communication about end-of-life treatment decisions be treated as a medical skill to be taught with the same rigor as other clinical procedures.

Advance Care Planning↗
PubMed1996

Cardiopulmonary resuscitation on television. Miracles and misinformation.

BACKGROUND: Responsible, shared decision making on the part of physicians and patients about the potential use of cardiopulmonary resuscitation (CPR) requires patients who are educated about the procedure's risks and benefits. Television is an important source of information about CPR for patients. We analyzed how three popular television programs depict CPR. METHODS: We watched all the episodes of the television programs ER and Chicago Hope during the 1994-1995 viewing season and 50 consecutive episodes of Rescue 911 broadcast over a three-month period in 1995. We identified all occurrences of CPR in each episode and recorded the causes of cardiac arrest, the identifiable demographic characteristics of the patients, the underlying illnesses, and the outcomes. RESULTS: There were 60 occurrences of CPR in the 97 television episodes--31 on ER, 11 on Chicago Hope, and 18 on Rescue 911. In the majority of cases, cardiac arrest was caused by trauma; only 28 percent were due to primary cardiac causes. Sixty-five percent of the cardiac arrests occurred in children, teenagers, or young adults. Seventy-five percent of the patients survived the immediate arrest, and 67 percent appeared to have survived to hospital discharge. CONCLUSIONS: The survival rates in our study are significantly higher than the most optimistic survival rates in the medical literature, and the portrayal of CPR on television may lead the viewing public to have an unrealistic impression of CPR and its chances for success. Physicians discussing the use of CPR with patients and families should be aware of the images of CPR depicted on television and the misperceptions these images may foster.

Bias↗